Christopher, my oldest biological nephew, is serving in the Tampa, Florida mission. His next youngest brother, Clark, is expecting his own mission call on either Wednesday, December 26th or Thursday, December 27, so we all head down to St. George to watch him open his call, participate in his ordination as an elder, and attend his endowment session on Saturday.
It's going to be fun spending a few days with extended family over New Years.
Clark's call didn't come on Wednesday (kind of expected with the Christmas holiday), so we hustle down to St. George on Thursday to ensure we're there by 7 pm for the opening. But it doesn't come. Drat! We'll have to try again on Friday and pray that it really comes.
Friday, Dale and I run a few errands and arrive back at the Farnsworths just around lunch time. My observant husband notices that the mailperson is parked in front of the mailbox stack, so I run into the house to see if Cliff or Tressie are home. Cliff is but he doesn't have the mail key.
"It's okay. The mailperson is there now. Maybe if you show them your driver's license to prove your address, she'll give you your mail."
A few moments later, Cliff triumphantly waves a large white envelope from the Church of Jesus Christ of Latter-Day Saints bearing Clark's name. It's going to be a busy couple of hours for Clark.
At 6:45, he meets with his bishop at the house, in the basement by the pool table for his living ordinance temple recommend. (It's the quietest place in the building because there's so many extended family members and friends there.)
At 7:00, Clark opens his call to the Independence, Missouri--Spanish speaking mission. He reports to the MTC on March 6th. Not much time to get ready. Chris even got special permission to join by Skype so that he could participate.
At 7:45, Clark leaves his own party to meet with his Stake President for a living ordinance temple interview.
At 8:00, he's ordained at the Stake Center to the Melchezidik Priesthood, office of an Elder.
By 9:10 tomorrow morning, he needs to be at the St. George temple to receive his own endowments.
Whew! I'm exhausted, which might explain why I feel like torturing Bailey, my youngest niece and the one who can entertain me and make me laugh the most at not-quite-two-years-old.
So, when we're all sure that Bailey is paying attention, someone pulls my oxygen cord apart into two separate pieces and I immediately slump and slink down as if I've been unplugged and am now dead. Bailey is immediately concerned and makes motions to reconnect the cord and wake me up again. Ah, I can breathe again and magically come to life.
We replay the scene at various times over the weekend, but Bailey doesn't want anything more to do with it. If anyone picks up my cord and threatens to disconnect me, she waves her hands in front of her, saying "No, No, No" as she runs out of the room. It's good to know she cares about me so much.
Finally, after torturing her several times and joking that she's going to be traumatized for life, I hit upon something that might help her feel better about my oxygen cord. So, I arrange for my cord to be disconnected while I slump dead again and deliberately place the two parts of the oxygen cord at her eye level so that she'll "accidentally" discover it as another niece guides her over to me.
"Oh no, Bailey. What happened to Trisha? Can you plug her in again? Good job, she's plugged in."
And, once again, I'm magically healed and sitting up, and Bailey got to heal me. She feels much better about that than watching me slump over.
Purple Everywhere
Daily Herald picture
Friday, December 28, 2012
Thursday, December 13, 2012
Port Insertion and Good-Bye PICC Line
Because Timpanogos Regional Hospital's radiology department's track record with finding my veins and inserting ports, we have to drive to Provo for today's port insertion.
Can I just say how much I love Riverwoods Imaging? It's a beautiful building with VERY caring, compassionate, and competent medical staff.
Gina is my nurse and she is wonderful! She checks on me regularly, is there to answer any questions we have, and takes the time to listen to me.
Dr. Gibby is equally wonderful. It usually takes about 45 minutes to place a port. It takes about two hours to place mine today, but I am absolutely not complaining. Instead, I'm rejoicing that their team is taking the requisite time to ensure that the port works well.
They have to tape down my chest to try and get as much access to my right neck, but I'm used to that.
No sedation, so I'm able to sense everything. At one point, I sense warm liquid running down my neck and part of my back. I think it must be a douse of liquid antibiotics, but then that doesn't explain the warmth. Then, it hits me. Of course! It's my blood. Okay, don't contemplate that too long, Trish.
At another point, I feel a weird pain, almost a sharp electrical shock in the middle of my left butt, then it travels down my left leg, gradually lessening until it stops about mid calf. Suddenly, I feel like I can't breathe. I focus on breathing slowly in for 3-4 counts and out for 3-4 counts to try and not panic, but it's a really strange sensation. I mention to Dr. Gibby and Gina, but they've never heard of that happening during a port insertion. Neither have I, and this is the fourth port for me. They kind of dismiss it since they don't really know what to do. My O2 concentration is good, so I keep focusing on breathing and imagine that I'm sitting on a beach with a cool breeze, birds calling overhead, and my toes nestled into the warm, wet sand.
A little while longer, Dr. Gibby knows what happened. He must have touched a vasal nerve with the lidocaine needle. It's the only explanation he knows of, but he didn't realize he'd gone so deep with the numbing medication. And there's really no way to tell where those vasal nerves are. We know he didn't nick the nerve because my O2 levels remained great, so no real harm done.
What really takes him a long time is closing the wound. Normally, they put only one layers of sutures in a port incision, but he takes extra time putting in three layers. He says my skin is so thin from having multiple ports and from the chemo, so the sutures aren't really "biting" the skin the way they should. He's afraid that the wound will open and get infected again if he doesn't go overboard with the sutures. I'm glad he cares that much! He even puts in three external sutures and one external suture at my neck to ensure everything stays closed.
After I'm cleaned up, all of the tape is removed, and I'm re-gowned, it's time to remove the PICC line. Gina actually seems nervous about pulling it; but Dr. Gibby assures her it's easy and she doesn't need him to supervise, so here we go. After removing the three external sutures that are holding it in and a gentle tug, a 1.5 foot white flexible tube comes out. I thought it would be a bigger deal, that I'd feel it more. But it's done. Gina seems relieved also at how easy it was.
What care! I will definitely drive to Provo rather than go to Timpanogos Hospital if I ever need a port again.
Can I just say how much I love Riverwoods Imaging? It's a beautiful building with VERY caring, compassionate, and competent medical staff.
Gina is my nurse and she is wonderful! She checks on me regularly, is there to answer any questions we have, and takes the time to listen to me.
Dr. Gibby is equally wonderful. It usually takes about 45 minutes to place a port. It takes about two hours to place mine today, but I am absolutely not complaining. Instead, I'm rejoicing that their team is taking the requisite time to ensure that the port works well.
They have to tape down my chest to try and get as much access to my right neck, but I'm used to that.
No sedation, so I'm able to sense everything. At one point, I sense warm liquid running down my neck and part of my back. I think it must be a douse of liquid antibiotics, but then that doesn't explain the warmth. Then, it hits me. Of course! It's my blood. Okay, don't contemplate that too long, Trish.
At another point, I feel a weird pain, almost a sharp electrical shock in the middle of my left butt, then it travels down my left leg, gradually lessening until it stops about mid calf. Suddenly, I feel like I can't breathe. I focus on breathing slowly in for 3-4 counts and out for 3-4 counts to try and not panic, but it's a really strange sensation. I mention to Dr. Gibby and Gina, but they've never heard of that happening during a port insertion. Neither have I, and this is the fourth port for me. They kind of dismiss it since they don't really know what to do. My O2 concentration is good, so I keep focusing on breathing and imagine that I'm sitting on a beach with a cool breeze, birds calling overhead, and my toes nestled into the warm, wet sand.
A little while longer, Dr. Gibby knows what happened. He must have touched a vasal nerve with the lidocaine needle. It's the only explanation he knows of, but he didn't realize he'd gone so deep with the numbing medication. And there's really no way to tell where those vasal nerves are. We know he didn't nick the nerve because my O2 levels remained great, so no real harm done.
What really takes him a long time is closing the wound. Normally, they put only one layers of sutures in a port incision, but he takes extra time putting in three layers. He says my skin is so thin from having multiple ports and from the chemo, so the sutures aren't really "biting" the skin the way they should. He's afraid that the wound will open and get infected again if he doesn't go overboard with the sutures. I'm glad he cares that much! He even puts in three external sutures and one external suture at my neck to ensure everything stays closed.
After I'm cleaned up, all of the tape is removed, and I'm re-gowned, it's time to remove the PICC line. Gina actually seems nervous about pulling it; but Dr. Gibby assures her it's easy and she doesn't need him to supervise, so here we go. After removing the three external sutures that are holding it in and a gentle tug, a 1.5 foot white flexible tube comes out. I thought it would be a bigger deal, that I'd feel it more. But it's done. Gina seems relieved also at how easy it was.
What care! I will definitely drive to Provo rather than go to Timpanogos Hospital if I ever need a port again.
Tuesday, December 11, 2012
Sixth Adcetris Dose
6/16 or 3/8 guaranteed finished with Adcetris after today's dose. 16 doses is the maximum for one round of chemo.
I was hoping I'd have a port by now, but the PICC line--hopefully--will work as well for today.
They're now giving me three medications to control nausea, and it's working! Their drugs (Emend, ondansetron, and one other?) give me about 4-4.5 days without nausea. Then, I take granistetron every morning and every evening, then rotate taking ondansetron (Zofran), lorazepam (Ativan), and promethazine (phenergan) every two hours. It's a pain to be taking so much anti-nausea pills, but they're working. I'll take working!
I've lost six pounds since my last appointment, but I promise to eat better since we finally figured out a working combination for nausea.
Dr. Wendy says I'm mistaken. She's planning on the full 16 doses. Even if the cancer is totally gone? I'm not sure, but I am disappointed. What happened to the 12 doses that we talked about at the last appointment?
I forget to mention how bad the peripheral neuropathy (nerve damage in my hands and now my feet and legs) is to Dr. Wendy, but I do mention it to Breanna (one of the chemo nurses). They mention it to Kathy (the patient coordinator) and I get a printed list of things to try: vinegar, B vitamins, and drinking tonic water to decrease muscle cramps and cocoa butter lotion. My summary: not much help! Dr. Wendy will discuss it further at our next appointment. Lovely! More to look forward to.
I was hoping I'd have a port by now, but the PICC line--hopefully--will work as well for today.
They're now giving me three medications to control nausea, and it's working! Their drugs (Emend, ondansetron, and one other?) give me about 4-4.5 days without nausea. Then, I take granistetron every morning and every evening, then rotate taking ondansetron (Zofran), lorazepam (Ativan), and promethazine (phenergan) every two hours. It's a pain to be taking so much anti-nausea pills, but they're working. I'll take working!
I've lost six pounds since my last appointment, but I promise to eat better since we finally figured out a working combination for nausea.
Dr. Wendy says I'm mistaken. She's planning on the full 16 doses. Even if the cancer is totally gone? I'm not sure, but I am disappointed. What happened to the 12 doses that we talked about at the last appointment?
I forget to mention how bad the peripheral neuropathy (nerve damage in my hands and now my feet and legs) is to Dr. Wendy, but I do mention it to Breanna (one of the chemo nurses). They mention it to Kathy (the patient coordinator) and I get a printed list of things to try: vinegar, B vitamins, and drinking tonic water to decrease muscle cramps and cocoa butter lotion. My summary: not much help! Dr. Wendy will discuss it further at our next appointment. Lovely! More to look forward to.
Thursday, November 22, 2012
Thanksgiving and Cancer
It's a wonderful Thanksgiving Day with family.
If I could bottle up my twenty-two year old niece, Bailey, she's the best medicine of all. She's absolutely tiny, petite in proportion. Has yet to hit 20 pounds and shouldn't yet be in a front-facing car seat because she's so little. But there's something so entertaining about such a little package who's got such a personality and is learning all of the intricacies of this world.
Her newest discovery? Owls. She loves owls, and I just happen to have a cream wooden one sitting on a shelf as a winter decoration. She quickly claims it as her own and insists on tucking it under one arm (even though it's rather hefty wooden piece) and dragging it with her all over the house.
Laughter and being entertained by Bailey and all of my young nephews and nieces truly is the best medicine. It's a great day.
That night, I'm a little sobered when I express my most recent thoughts to Dale.
"Love? Out of the past five Thanksgivings, how many have we spent while dealing with cancer or the effects of a bone marrow transplant to cure the cancer?
We both come to the same conclusion. Four. Four out of the last five Thanksgivings have been spent with the dreaded C word hanging over our heads.
Drat! We need some new holiday plans!
If I could bottle up my twenty-two year old niece, Bailey, she's the best medicine of all. She's absolutely tiny, petite in proportion. Has yet to hit 20 pounds and shouldn't yet be in a front-facing car seat because she's so little. But there's something so entertaining about such a little package who's got such a personality and is learning all of the intricacies of this world.
Her newest discovery? Owls. She loves owls, and I just happen to have a cream wooden one sitting on a shelf as a winter decoration. She quickly claims it as her own and insists on tucking it under one arm (even though it's rather hefty wooden piece) and dragging it with her all over the house.
Laughter and being entertained by Bailey and all of my young nephews and nieces truly is the best medicine. It's a great day.
That night, I'm a little sobered when I express my most recent thoughts to Dale.
"Love? Out of the past five Thanksgivings, how many have we spent while dealing with cancer or the effects of a bone marrow transplant to cure the cancer?
We both come to the same conclusion. Four. Four out of the last five Thanksgivings have been spent with the dreaded C word hanging over our heads.
Drat! We need some new holiday plans!
Wednesday, November 21, 2012
Blood Transfusion and PICC Line
We leave for Timpanogos Regional Hospital a little early, knowing that they might have a little trouble starting an IV for the transfusion, and arrive at 12:30 p.m.
After checking in to Same-Day Surgery, they tell us that they're moving us to one of the floors to give us a room that's larger. Sounds good to me.
However, I start laughing when it ends up being the pediatric unit that I'm escorted to. And it's decorated so cute, with Dr. Seuss sayings and bright vinyl cut outs everywhere. I get the Dandelion Wishes room. And there's only one other patient on the floor--a two month-old baby, so I pretty much get a dedicated nurse to myself also. Cool.
Hmmmm. Maybe not so cool.
Thirteen large-bore needle sticks that each sting, six different people poking my veins and poking through my veins, and three hours later, we still aren't any closer to having a working IV. Each attempt has been on my right arm, and it's black and blue from end to end now. This is not working.
What other options do we have? They've called up the nursing team from radiology--the same nursing team that helped place and pull the port. They can't find a working vein even with the ultrasound machine, but they do have another suggestion--a PICC line.
Okay, let's do a PICC line. I agree quickly and eagerly to any other idea that will help us accomplish the transfusion goal and get me out of this hospital. It's almost Thanksgiving Day. I have family coming in from St. George. Not just any family, my sister. My closest sister that has been there for me through all of it--even before Dale was in the picture.
"No sedation?"
"Nope."
About thirty minutes later, we have a working PICC line (an IV inserted into my left arm and leading directly to my heart). Hooray! Now we can start the transfusion at 3:30 p.m.--close to the time originally that I was told I'd be finished.
I call my sister and invite her up to the hospital. I feel terrible that she's at my house for the holiday weekend, and I'm in the hospital. She hates hospitals though, so I know she's making a sacrifice just to walk in the doors for me.
She does manage to find quite a bit of humor in the doors to the unit though. Plastered on the wall is the familiar quote "A person's a person, no matter how small."
"There you go, Trish. They were matching your room according to your height. No wonder you ended up in pediatrics!" At least she can find some humor in today's ordeal.
The two units go rather smoothly, and we're finally released around 8:30 p.m. to start celebrating the Thanksgiving weekend.
After checking in to Same-Day Surgery, they tell us that they're moving us to one of the floors to give us a room that's larger. Sounds good to me.
However, I start laughing when it ends up being the pediatric unit that I'm escorted to. And it's decorated so cute, with Dr. Seuss sayings and bright vinyl cut outs everywhere. I get the Dandelion Wishes room. And there's only one other patient on the floor--a two month-old baby, so I pretty much get a dedicated nurse to myself also. Cool.
Hmmmm. Maybe not so cool.
Thirteen large-bore needle sticks that each sting, six different people poking my veins and poking through my veins, and three hours later, we still aren't any closer to having a working IV. Each attempt has been on my right arm, and it's black and blue from end to end now. This is not working.
What other options do we have? They've called up the nursing team from radiology--the same nursing team that helped place and pull the port. They can't find a working vein even with the ultrasound machine, but they do have another suggestion--a PICC line.
Okay, let's do a PICC line. I agree quickly and eagerly to any other idea that will help us accomplish the transfusion goal and get me out of this hospital. It's almost Thanksgiving Day. I have family coming in from St. George. Not just any family, my sister. My closest sister that has been there for me through all of it--even before Dale was in the picture.
"No sedation?"
"Nope."
About thirty minutes later, we have a working PICC line (an IV inserted into my left arm and leading directly to my heart). Hooray! Now we can start the transfusion at 3:30 p.m.--close to the time originally that I was told I'd be finished.
I call my sister and invite her up to the hospital. I feel terrible that she's at my house for the holiday weekend, and I'm in the hospital. She hates hospitals though, so I know she's making a sacrifice just to walk in the doors for me.
She does manage to find quite a bit of humor in the doors to the unit though. Plastered on the wall is the familiar quote "A person's a person, no matter how small."
"There you go, Trish. They were matching your room according to your height. No wonder you ended up in pediatrics!" At least she can find some humor in today's ordeal.
The two units go rather smoothly, and we're finally released around 8:30 p.m. to start celebrating the Thanksgiving weekend.
Tuesday, November 20, 2012
Fifth Adcetris Dose
Oh yay! It's that time again--time to load my body with more poison to kill off more cancer cells (and healthy ones too).
I get to hear the results of the CT scan first, but I'm not expecting much.
Wait. What is this? Much better than I'd hoped for. Maybe I should have scans on my birthdays more often--as long as the results are this good.
So, the seven other places that had Hodgkins in them? Gone. Gone! All gone. Whew! And the largest tumor keeps shrinking bits at a time. Not as much shrinkage there as I'd hoped for, but still continued progress and shrinkage. Now we're down to one 22mm x 13mm mass that started as a 38mm x 23mm mass. Progress is good. And having only one area to worry about now is very good.
Unfortunately, that one mass is shrinking so slowly that Dr. Wendy estimates that I'm probably in for another seven doses of chemo--12 altogether. 12 doses x 3 weeks = 36 weeks of chemo this time. But it's not the full 16 doses and almost full year that it could have been, so I'll take my 12.
Another two needle sticks and attempts and blood is collected and an IV is placed again. Dr. Wendy mentions that we might have to insert a PICC line at some point to give chemo through, but that day isn't today.
Again, my blood hemolyzes and they have to stick me one more time to draw additional blood. No biggie!
About twenty minutes later, they're trying to tell me something; but my brain isn't focusing correctly and getting it. Something about white blood cells being too low. Oh no? More waiting before they can treat me? No, they're not so low that they can't treat today; and they're counting on the Neulasta shots to make up the difference over the next few weeks. Cool.
Wait. There's still a problem? Oh, now my red blood cells and platelets are too low also--low enough that I need to have two units transfused tomorrow. Okay. I've had blood before. My body tolerates it well, so they tell me to show up at Timpanogos Regional Hospital (again!) tomorrow at 1 p.m. It should take three hours to transfuse the two units and we should be on our way out by 4 p.m.
Chemo goes smoothly and quickly again, so I'm free for another three weeks (with the exception of the transfusion tomorrow).
I get to hear the results of the CT scan first, but I'm not expecting much.
Wait. What is this? Much better than I'd hoped for. Maybe I should have scans on my birthdays more often--as long as the results are this good.
So, the seven other places that had Hodgkins in them? Gone. Gone! All gone. Whew! And the largest tumor keeps shrinking bits at a time. Not as much shrinkage there as I'd hoped for, but still continued progress and shrinkage. Now we're down to one 22mm x 13mm mass that started as a 38mm x 23mm mass. Progress is good. And having only one area to worry about now is very good.
Unfortunately, that one mass is shrinking so slowly that Dr. Wendy estimates that I'm probably in for another seven doses of chemo--12 altogether. 12 doses x 3 weeks = 36 weeks of chemo this time. But it's not the full 16 doses and almost full year that it could have been, so I'll take my 12.
Another two needle sticks and attempts and blood is collected and an IV is placed again. Dr. Wendy mentions that we might have to insert a PICC line at some point to give chemo through, but that day isn't today.
Again, my blood hemolyzes and they have to stick me one more time to draw additional blood. No biggie!
About twenty minutes later, they're trying to tell me something; but my brain isn't focusing correctly and getting it. Something about white blood cells being too low. Oh no? More waiting before they can treat me? No, they're not so low that they can't treat today; and they're counting on the Neulasta shots to make up the difference over the next few weeks. Cool.
Wait. There's still a problem? Oh, now my red blood cells and platelets are too low also--low enough that I need to have two units transfused tomorrow. Okay. I've had blood before. My body tolerates it well, so they tell me to show up at Timpanogos Regional Hospital (again!) tomorrow at 1 p.m. It should take three hours to transfuse the two units and we should be on our way out by 4 p.m.
Chemo goes smoothly and quickly again, so I'm free for another three weeks (with the exception of the transfusion tomorrow).
Friday, November 16, 2012
Happy 45th Birthday To Me
The weeks continue to pass. That's a good thing, but hard too. I have good days when I have a little more energy and can actually accomplish something other than trying to hold down three bites of solid food.
However, if I've being brutally honest, I have more bad days now than ever before. I just feel sick. Sick to my stomach, pain deep in my bones that continually escalates throughout the day and only narcotics touch it (which I hate taking).
Worst thing? I'm realizing that in a very real way this battle with cancer has somewhat changed me. I'm generally a very optimistic person, full of hope and plans for the future. A recent blessing said "I was blessed with a happy heart and optimistic spirit, and those gifts will serve me well throughout the trials of cancer."
So what's the problem, Trish? The problem is that, with all of the past three occurrences of cancer, I've fought hard in my war against cancer. I knew it wasn't going to beat me, so I put all of my hope and faith into the battle and KNEW I would beat it.
This time? I know I will beat it again. I do. I've been given that assurance several times. So what's different? Why do I end almost every day in tears? Because, darn it, this time I know with equal assurity that this is not my last battle with Hodgkins. It's going to come back. So why fight so hard only to end up in the same place? I'm really struggling with that idea this time. I feel like I've lost some innocence or hope or faith or something, and I don't like it. This is not who I'm used to being, but it is the new me.
A blessing promised that this treatment would far exceed all expectations. Silly me. I was thinking that it meant that I wouldn't need very many doses of chemo, that it would work extremely quickly, or that I wouldn't be troubled with side effects, or something easier this time. Nope, nope, and nope. So I'm assuming that specific promise applies to the length of time that the cancer will stay away this time. Dr. Wendy is betting on about a 3 year window, so I'm hoping for at least 7-10 years before it comes back and probably, finally kills this weakened body of mine. Stay tuned.
In the meantime, today is my 45th birthday. And where do I get to spend part of it? At the imaging center for a CAT/CT scan to see if there's any measurable progress. The last report said the biggest tumor was shrinking somewhat, but the other seven places hadn't been touched. I hope this scan shows more positive results.
However, if I've being brutally honest, I have more bad days now than ever before. I just feel sick. Sick to my stomach, pain deep in my bones that continually escalates throughout the day and only narcotics touch it (which I hate taking).
Worst thing? I'm realizing that in a very real way this battle with cancer has somewhat changed me. I'm generally a very optimistic person, full of hope and plans for the future. A recent blessing said "I was blessed with a happy heart and optimistic spirit, and those gifts will serve me well throughout the trials of cancer."
So what's the problem, Trish? The problem is that, with all of the past three occurrences of cancer, I've fought hard in my war against cancer. I knew it wasn't going to beat me, so I put all of my hope and faith into the battle and KNEW I would beat it.
This time? I know I will beat it again. I do. I've been given that assurance several times. So what's different? Why do I end almost every day in tears? Because, darn it, this time I know with equal assurity that this is not my last battle with Hodgkins. It's going to come back. So why fight so hard only to end up in the same place? I'm really struggling with that idea this time. I feel like I've lost some innocence or hope or faith or something, and I don't like it. This is not who I'm used to being, but it is the new me.
A blessing promised that this treatment would far exceed all expectations. Silly me. I was thinking that it meant that I wouldn't need very many doses of chemo, that it would work extremely quickly, or that I wouldn't be troubled with side effects, or something easier this time. Nope, nope, and nope. So I'm assuming that specific promise applies to the length of time that the cancer will stay away this time. Dr. Wendy is betting on about a 3 year window, so I'm hoping for at least 7-10 years before it comes back and probably, finally kills this weakened body of mine. Stay tuned.
In the meantime, today is my 45th birthday. And where do I get to spend part of it? At the imaging center for a CAT/CT scan to see if there's any measurable progress. The last report said the biggest tumor was shrinking somewhat, but the other seven places hadn't been touched. I hope this scan shows more positive results.
Wednesday, October 31, 2012
Fourth Adcetris Dose
Guess I'm going to find out what we're going to do without a port today.
I know the oncology nurses are the best at finding veins, but can they really find even mine?
Hmmmm.
First step, draw blood work. Second poke and we have venous access for blood work and an IV started. Hooray! Not bad at all.
I wait about twenty minutes when Breanna announces she has terrible news for me. Oh no! Now what? Oh this one is easy. My blood hemolyzed (cells broke apart) so they need to poke a fresh vein and try to draw blood with cells that will stay together.
One stick later and one vial later, we're in business again. Hooray for exceptionally talented nurses who aren't afraid of being around what-sometimes-feels-like-we're-radioactive patients!
Apparently, there's a nation-wide shortage of IV Benadryl, so we get to skip that step entirely. Cool. No loopy sleep time for me today.
They hang Zofran, then Emend (both anti-nausea medications), and finish with Adcetris.
This is actually seeming easy today. Yahoo!
I know the oncology nurses are the best at finding veins, but can they really find even mine?
Hmmmm.
First step, draw blood work. Second poke and we have venous access for blood work and an IV started. Hooray! Not bad at all.
I wait about twenty minutes when Breanna announces she has terrible news for me. Oh no! Now what? Oh this one is easy. My blood hemolyzed (cells broke apart) so they need to poke a fresh vein and try to draw blood with cells that will stay together.
One stick later and one vial later, we're in business again. Hooray for exceptionally talented nurses who aren't afraid of being around what-sometimes-feels-like-we're-radioactive patients!
Apparently, there's a nation-wide shortage of IV Benadryl, so we get to skip that step entirely. Cool. No loopy sleep time for me today.
They hang Zofran, then Emend (both anti-nausea medications), and finish with Adcetris.
This is actually seeming easy today. Yahoo!
Monday, October 22, 2012
Bye Bye Port
There's something wrong with my port. It's oozing blood and yucky stuff--even after being on a strong dose of antibiotics for ten days. I don't know what I was thinking would happen; I just knew that something needed to change.
So into Dr. Wendy's I go and back to the nurses station. They're immediately concerned also, and involve Dr. Wendy. Her response after one two-second glance? "Okay. That's infected. I can't do anything with an infected port. Time to rip that one out."
Out? But I need my port. My veins have always been horrible before; now they're downright nonexistent. What now?
I'm whisked off to Timpanogos Regional Hospital once again. Yup, it's me. I'm back. It's the same nursing staff that was there about ten weeks ago when the port was originally placed. And they remember me.
It is NOT a good thing to be this well known in local medical circles!
"So we're taking it out already?"
"Yup. It got infected."
"Darn. That doesn't happen often."
"Leave it to my body."
"Still don't want any sedation?"
"Right!"
"Okay. Here we go."
A short thirty minutes later, no more port. I'm actually kind of sad because I know how much it helped to have it. Now I'm not sure what we're going to do with chemo. This could be interesting.
So into Dr. Wendy's I go and back to the nurses station. They're immediately concerned also, and involve Dr. Wendy. Her response after one two-second glance? "Okay. That's infected. I can't do anything with an infected port. Time to rip that one out."
Out? But I need my port. My veins have always been horrible before; now they're downright nonexistent. What now?
I'm whisked off to Timpanogos Regional Hospital once again. Yup, it's me. I'm back. It's the same nursing staff that was there about ten weeks ago when the port was originally placed. And they remember me.
It is NOT a good thing to be this well known in local medical circles!
"So we're taking it out already?"
"Yup. It got infected."
"Darn. That doesn't happen often."
"Leave it to my body."
"Still don't want any sedation?"
"Right!"
"Okay. Here we go."
A short thirty minutes later, no more port. I'm actually kind of sad because I know how much it helped to have it. Now I'm not sure what we're going to do with chemo. This could be interesting.
Sunday, October 21, 2012
Cyclical Chemo
I've had five different regimens of chemo so far: MOPP at 7 years old, ADV at 40 years old, ICE and BEAM about a year ago at 42 years old, and now Adcetris at 44 years old.
With each regimen, you're told that the side effects of chemo are very cyclical. You get one dose and it starts working immediately. However, it takes a while for it to do its worst damage, so about 10 days after treatment is when your blood cell counts are supposed to be at their worst. That time period is called the nadir, or low point. Then, your body starts rebuilding and healing from the chemo, which usually takes about 10 days--just in time for your next dose.
So I've heard the cycle repeated over and over to me throughout the years while dealing with Hodgkins. But I've never felt it or even really noticed it as much as I do with Adcetris.
Day 1, Chemo day. I'm feeling pretty good: good energy, not so much pain, not nauseated. Overall, pretty good. Immediately, I notice more neuropathy (tingling in the tips of my hands) and the metallic taste in my mouth is back.
Days 2-8, Dropping down. Still have good energy, not so much pain, but the nausea is really picking up. Maybe I should think about switching medicines again. I'm starting to itch in strange places also, but it's not the frantic, insane itching that's coming.
Days 9-12, Low point. So tired. It hit today, suddenly, from my last dose (day 10). I fell asleep on the couch, sitting up, while watching TV. Weird! Abruptly, I'm feeling way more bone pain than usual also. It's a deep pain that's in the middle of my bones and attacks everything from my forearms and hands, to my shoulders, to my hips, legs, and feet. If it gets really bad, the pain start pulsing. With every heartbeat, I can feel the pain in every area simultaneously. Not fun! Nothing sounds good to eat. Even the taste in my mouth is enough to make me violently nauseous sometimes. Plus, I itch in random places. It's not like a lotion applied to my skin will help. This is a deep itch--that's coming from the inside out. I can take two Benadryl when it gets to the driving-me-absolutely-insane stage, and that helps somewhat. These are the days when it's hard to honestly answer the question "How are you doing," no matter how genuinely it's asked.
Days 13-16, Building up. Can pretty much eat anything I want without feeling nauseous, but the weird taste still lingers. I can accomplish a few tasks like cooking or cleaning a room without needing a nap afterward. And the pain is receding to a dull, constant ache in the background again.
Days 17-20, Back up. I'm feeling pretty good again. Good energy, not so much pain, metallic taste is gone. Yay. Must be time for another dose on day 21.
With each regimen, you're told that the side effects of chemo are very cyclical. You get one dose and it starts working immediately. However, it takes a while for it to do its worst damage, so about 10 days after treatment is when your blood cell counts are supposed to be at their worst. That time period is called the nadir, or low point. Then, your body starts rebuilding and healing from the chemo, which usually takes about 10 days--just in time for your next dose.
So I've heard the cycle repeated over and over to me throughout the years while dealing with Hodgkins. But I've never felt it or even really noticed it as much as I do with Adcetris.
Day 1, Chemo day. I'm feeling pretty good: good energy, not so much pain, not nauseated. Overall, pretty good. Immediately, I notice more neuropathy (tingling in the tips of my hands) and the metallic taste in my mouth is back.
Days 2-8, Dropping down. Still have good energy, not so much pain, but the nausea is really picking up. Maybe I should think about switching medicines again. I'm starting to itch in strange places also, but it's not the frantic, insane itching that's coming.
Days 9-12, Low point. So tired. It hit today, suddenly, from my last dose (day 10). I fell asleep on the couch, sitting up, while watching TV. Weird! Abruptly, I'm feeling way more bone pain than usual also. It's a deep pain that's in the middle of my bones and attacks everything from my forearms and hands, to my shoulders, to my hips, legs, and feet. If it gets really bad, the pain start pulsing. With every heartbeat, I can feel the pain in every area simultaneously. Not fun! Nothing sounds good to eat. Even the taste in my mouth is enough to make me violently nauseous sometimes. Plus, I itch in random places. It's not like a lotion applied to my skin will help. This is a deep itch--that's coming from the inside out. I can take two Benadryl when it gets to the driving-me-absolutely-insane stage, and that helps somewhat. These are the days when it's hard to honestly answer the question "How are you doing," no matter how genuinely it's asked.
Days 13-16, Building up. Can pretty much eat anything I want without feeling nauseous, but the weird taste still lingers. I can accomplish a few tasks like cooking or cleaning a room without needing a nap afterward. And the pain is receding to a dull, constant ache in the background again.
Days 17-20, Back up. I'm feeling pretty good again. Good energy, not so much pain, metallic taste is gone. Yay. Must be time for another dose on day 21.
Wednesday, October 10, 2012
Third Dose and CT Scans
It's Friday, October 5 and time for CT scans to see what affect the chemo has had after two doses. The CT goes pretty smoothly (besides having to drink TWO containers of that ghastly, chalky contrast material), so now it's just a wait until Wednesday when I'll find out the results.
Wednesday, October 10 comes and time for another appointment with Dr. Wendy. Whoops! No one told me she was out of town, so I'm meeting with another oncologist. Now, I feel like I'm the teacher and not the patient.
This doctor has never known anyone that's used Adcetris and wants me to fill her in on all of its subtleties and complexities. Wow!
After being grilled for about twenty minutes, she tells me the chemo is having some affect on the cancer, but she can't really say how much. It almost seems like she's so interested in hearing about Adcetris that she doesn't have time to tell me about how much it's helping. Oh well. I can get my own printout and read about the CT results.
Time for my third dose of chemo. While I'm waiting, I read the CT results.
In one place, it says that the largest tumor shrank from 37mm in length to 27mm in length. That's not a bad reduction. But I'm confused because the summary statement says that the same tumor shrank from 30mm to 27mm. That's not very much at all. Which one is accurate? The width shrunk only from 20mm to 16mm, so it's probably the second measurement. And none of the other tumors showed any reductions. Crud!
So which part of this treatment will "exceed all expectations"? If it's not the side effects and it's not the number of doses I'll need, what is it? I'm banking on that this chemo will keep the cancer away longer then the other treatments have. Okay. I can live with that!
When I go back the next day for my Neulasta shot, Paula (one of the nurses that's been there through all three of the past occurrences with me) looks up the original PET scan for me to see what size it reported. The largest tumor was 38mm x 20mm, so the reduction is better than I originally thought. 38-37mm down to 27mm is about a 25% reduction. Not bad. Just not gone yet and lots more doses to look forward to.
Comme si, comme ca.
Wednesday, October 10 comes and time for another appointment with Dr. Wendy. Whoops! No one told me she was out of town, so I'm meeting with another oncologist. Now, I feel like I'm the teacher and not the patient.
This doctor has never known anyone that's used Adcetris and wants me to fill her in on all of its subtleties and complexities. Wow!
After being grilled for about twenty minutes, she tells me the chemo is having some affect on the cancer, but she can't really say how much. It almost seems like she's so interested in hearing about Adcetris that she doesn't have time to tell me about how much it's helping. Oh well. I can get my own printout and read about the CT results.
Time for my third dose of chemo. While I'm waiting, I read the CT results.
In one place, it says that the largest tumor shrank from 37mm in length to 27mm in length. That's not a bad reduction. But I'm confused because the summary statement says that the same tumor shrank from 30mm to 27mm. That's not very much at all. Which one is accurate? The width shrunk only from 20mm to 16mm, so it's probably the second measurement. And none of the other tumors showed any reductions. Crud!
So which part of this treatment will "exceed all expectations"? If it's not the side effects and it's not the number of doses I'll need, what is it? I'm banking on that this chemo will keep the cancer away longer then the other treatments have. Okay. I can live with that!
When I go back the next day for my Neulasta shot, Paula (one of the nurses that's been there through all three of the past occurrences with me) looks up the original PET scan for me to see what size it reported. The largest tumor was 38mm x 20mm, so the reduction is better than I originally thought. 38-37mm down to 27mm is about a 25% reduction. Not bad. Just not gone yet and lots more doses to look forward to.
Comme si, comme ca.
Tuesday, September 18, 2012
Second Chemo Dose
That Neupogen worked! I guess all of those early morning drives to get injected were worth it.
I'm actually given the second chemo dose on Tuesday, September 18, after a quick blood draw indicated my cell levels were high enough.
I've realized that the only thing worse than getting chemo is needing it but not being able to get it because of low blood counts.
This time, they can give me one Neulasta shot if I come back tomorrow. Neulasta is like Neupogen; it's just the long-lasting type of growth cell stimulating factor (GCSF).
Because I have enough time scheduled between doses (at least 15 days), I qualify for Neulasta and not every day shots of Neupogen. I guess the insurance companies have really balked at paying for these drugs. Neulasta is easily over $1,000 per shot. The manufacturer claim it works best if given 24 hours after chemo and at least 15 days before chemo, so that narrow window cuts down on the amount of people that can get it.
Lucky me. No more early morning drives for a shot!
I'm actually given the second chemo dose on Tuesday, September 18, after a quick blood draw indicated my cell levels were high enough.
I've realized that the only thing worse than getting chemo is needing it but not being able to get it because of low blood counts.
This time, they can give me one Neulasta shot if I come back tomorrow. Neulasta is like Neupogen; it's just the long-lasting type of growth cell stimulating factor (GCSF).
Because I have enough time scheduled between doses (at least 15 days), I qualify for Neulasta and not every day shots of Neupogen. I guess the insurance companies have really balked at paying for these drugs. Neulasta is easily over $1,000 per shot. The manufacturer claim it works best if given 24 hours after chemo and at least 15 days before chemo, so that narrow window cuts down on the amount of people that can get it.
Lucky me. No more early morning drives for a shot!
Wednesday, September 12, 2012
Too Low to Get Treatment
It's Wednesday, September 12th and it's time for my second treatment. Dale has to work, so I solicit Jennifer's assistance in going with me. She doesn't know how to play cribbage and has heard that's how Dale and I pass the time while the nasty drugs are seeping into my veins, so she agrees to accompany me.
Dr. Wendy's office draws some blood, and we talk with Dr. Wendy for just a bit about some of the weird side affects. Alopecia or hair loss isn't mentioned in the Adcetris patient booklet, but I'm assuming it's something like a conditioned response with my body. "Oh, this is chemo. Body, you know what to do. Shed all hair."
Then, Jennifer and I go join the circle of trust for my treatment. We set up the cribbage board and wait, and wait, and wait. I'm trying to teach Jennifer all of the intricacies of cribbage, so I'm not that conscious of how much time is slipping away.
(My sisters say that cribbage rules seem to say "Well, if it's the second Tuesday of the month and your name starts with the letter 'L,' give yourself two points." Hilarious!)
After about 30-45 minutes, one of the nurses approaches us. "Trish, your blood cell counts are so low that we can't treat you today. Instead, you need to get a shot of Neupogen every day for the next five days."
So, when I'm feeling absolutely miserable and have my blood drawn, my levels are great. But, when I feel good and am ready for another treatment, my levels are dangerously low. Weird!
They can't use Neulasta, which is the longer-lasting shot that stimulates my bone marrow to produce more cells because there's not the 15 days before my next treatment window that it needs.
I get one shot that day. Then, at 8:30 on Thursday morning, I get to drive down again to get another shot.
The American Fork office happens to be closed this Friday, so Friday, Saturday, and Sunday, I get to drive down to the Central Utah Clinic in Provo (directly west of UVRMC) every morning at 8:00 to get a shot. Yes, even on Sunday! Whew!
They're serious about that 8:00 a.m. time, I learn on Friday when I arrive at 8:12 a.m. instead. I have to wait about 30 minutes before they can finally give me the five-second shot. But I hear while I'm waiting that there were about 15 patients there that morning for their shots--most of them already in line by 7:55.
Note to self: be there early the next two days so I can be out of there earlier.
By Saturday, they don't have us meet them in the office. Instead, the nurses have formed an assembly line in the north lobby, where they have a list of names and a container of different medicines. You step up, announce your name and birthdate, they sort through the container to find your medicine, and give it to you. I was in the lobby for about 1.5 minutes on Sunday--total--because I was the first in line.
Dr. Wendy's office draws some blood, and we talk with Dr. Wendy for just a bit about some of the weird side affects. Alopecia or hair loss isn't mentioned in the Adcetris patient booklet, but I'm assuming it's something like a conditioned response with my body. "Oh, this is chemo. Body, you know what to do. Shed all hair."
Then, Jennifer and I go join the circle of trust for my treatment. We set up the cribbage board and wait, and wait, and wait. I'm trying to teach Jennifer all of the intricacies of cribbage, so I'm not that conscious of how much time is slipping away.
(My sisters say that cribbage rules seem to say "Well, if it's the second Tuesday of the month and your name starts with the letter 'L,' give yourself two points." Hilarious!)
After about 30-45 minutes, one of the nurses approaches us. "Trish, your blood cell counts are so low that we can't treat you today. Instead, you need to get a shot of Neupogen every day for the next five days."
So, when I'm feeling absolutely miserable and have my blood drawn, my levels are great. But, when I feel good and am ready for another treatment, my levels are dangerously low. Weird!
They can't use Neulasta, which is the longer-lasting shot that stimulates my bone marrow to produce more cells because there's not the 15 days before my next treatment window that it needs.
I get one shot that day. Then, at 8:30 on Thursday morning, I get to drive down again to get another shot.
The American Fork office happens to be closed this Friday, so Friday, Saturday, and Sunday, I get to drive down to the Central Utah Clinic in Provo (directly west of UVRMC) every morning at 8:00 to get a shot. Yes, even on Sunday! Whew!
They're serious about that 8:00 a.m. time, I learn on Friday when I arrive at 8:12 a.m. instead. I have to wait about 30 minutes before they can finally give me the five-second shot. But I hear while I'm waiting that there were about 15 patients there that morning for their shots--most of them already in line by 7:55.
Note to self: be there early the next two days so I can be out of there earlier.
By Saturday, they don't have us meet them in the office. Instead, the nurses have formed an assembly line in the north lobby, where they have a list of names and a container of different medicines. You step up, announce your name and birthdate, they sort through the container to find your medicine, and give it to you. I was in the lobby for about 1.5 minutes on Sunday--total--because I was the first in line.
Saturday, September 1, 2012
Portable Oxygen Nightmares
After fighting with the ER staff for five hours, I just want to go home, get my O2 concentrator set up, and collapse into bed. Nope. Not going to be that easy.
There's no one waiting for us at our house when we get there. Dale's absolutely exhausted, so I send him to bed while I wait. And wait. And wait.
When I've waited about an hour, I call the phone number that the hospital gave me for Alpine Home Medical. I reach their answering service but tell them I'm waiting for a delivery, so they connect me directly to him.
He's in Riverton, heading to our house; but it will take another 30-45 minutes to arrive.
Aaaarrrrrggggghhhh! Really? It's 4:00 a.m. I was told you'd be waiting for us? There's nothing I can do now but sit and wait some more.
He arrives in about 35 minutes as promised and quickly unloads the concentrator and sets it up. Where's the connection piece that I need for my BiPAP machine? Oh, he wasn't told I needed one (even though I was there in the hospital listening to them give the orders for it), so he'll have to bring one in the morning. That doesn't really help me tonight, but at least I'll get the oxygen I need.
After learning that I got rid of supplemental oxygen about six months ago (it was only that brief of a break I got from it? Darn!), he hurries through all of the paperwork. Do I need portable oxygen? No, I just need it at night, so the concentrator will work great.
He's pretty efficient and gone about 15 minutes later.
Whew! Time for bed!!!!
The next morning, a different driver for Alpine Home Medical brings by a connection piece that I need. Yay! We're in business. Or are we?
Late morning or early afternoon, I realize that I'm struggling to breathe even while sitting quietly at home. Crud! Not only do I need supplemental oxygen while I sleep, it looks like I'm going to need portable oxygen so that I can have it 24/7 as I go to work and church and run errands.
I call Alpine Home Medical's answering service again and tell them I need to speak with their delivery person. It's the same person that delivered the concentrator early this morning, but now he's decided that he doesn't want to do his job. At least, that's my only explanation for what ensues.
After a LOT of going back and forth between me and this man, a couple things are evident. 1) calling to arrange the delivery of portable oxygen isn't going to be the easy thing I thought it would be and 2) this guy doesn't want to come to my house today under any circumstances.
First I'm told that he can't just deliver oxygen tanks. They have to be on the order they received from the hospital. Luckily, I had called the ER department before I spoke with him; and Luke assured me that the order would cover portable oxygen as well. Not true, according to Mr. I-don't-want-to-work-on-a-Saturday.
So I have to give the delivery guy Luke's phone number so that Alpine can get the order they need. Whew! That's squared away. Then, I get another call from Alpine. He won't deliver portable oxygen tanks on a Saturday. Period. That's their company policy. Why the heck didn't you tell me that before we wasted all that time getting the order then?
If I knew I needed portable oxygen, why didn't I mention that earlier this morning when he delivered the concentrator? I didn't know that I needed it then, but I know it now. They delivered the concentrator on Saturday. Why can't they deliver portable O2 tanks on a Saturday? He tells me, "Because it's not an emergency."
Well, it is critical to me. I'm supposed to play a musical number and play the organ in Sacrament Meeting tomorrow and teach a Relief Society lesson. That's pretty hard to do when you feel like you're going to pass out because you're not getting enough oxygen. Plus, I need to go to work on Monday. How am I going to do all of that without portable oxygen tanks?
Finally, he acquiesces and agrees to bring the O2 tanks much later that evening. I don't care what time they arrive, as long as I have them for Sunday, so I'm good.
Then, I make the mistake of asking him to bring a conserving regulator for the tanks. It's a device that doesn't permit oxygen to escape from the tanks constantly but releases oxygen only when you inhale. That way, each tank lasts longer and I don't have to haul as many tanks to work.
Now the real trouble starts. He informs me "There's no way that you're getting a regulator today. Just give up on that idea. Even when I bring your tanks, I'm not going to bring you a regulator."
What's the problem? I've had oxygen before. I've never had to ask for the conserving device. In fact, the delivery people offered it to me. What in the world? Where is this attitude coming from? I'm the customer. You're in a very customer-oriented field, but you're giving me this crap?
Apparently, I need a specific order for the conserving regulator. "Okay. You've obviously talked to Luke and he got you the order you needed before. Can you call him again and ask him to add a regulator to the order? Do you really need me to play go-between for you? What's the problem? I can tell that you don't want to do your job on a Saturday. I understand that. I wouldn't be necessarily thrilled with the idea either, but it's your job! You're on call. It's up to you to be pleasant. It wasn't my choice that my lungs decided to give out on a Saturday. I'm so sorry for the inconvenience that you're having to go through. What about my inconvenience as the customer who's dealing with cancer for the fourth freaking time, chemo for the fifth time, lungs that are failing from the first time, and a whole slew of other affects? What about me? What about the person you're serving that you're supposed to be making life easier for?"
"Well, things have changed with the state and local laws in the past six months," I'm brusquely informed. "You can't just snap your fingers, write a list of things you want, and expect that I'll jump and deliver them."
He reluctantly agrees to call Luke to add a regulator to the order. However, he won't bring me one today. Instead, I have to wait for a respiratory therapist to come to my house and validate the settings on it before they'll give me one. "And they work only on weekdays. There's no way you're getting one today" is his parting, triumphant revelation.
Really? That's how you want to treat your customers? I've had it. I get on the phone with two other home medical companies. Even though they are both usually closed on Saturdays, they are happy to deliver portable oxygen tanks and a conserving regulator if they can get a copy of the order from Luke. And, they're both willing to call Luke and get that order faxed to them.
After figuring out which company is accepted by our insurance, I call Luke to thank him for all of his patience with taking phone calls today and helping me get the order I needed. When I mention that I'm going to switch companies, he's not surprised. "In fact, that guy from Alpine was complaining to me over the phone about you."
What? He told Luke that he'd already been to my house three times today. That I was the most demanding person he'd ever met, and that I would never be happy with their service.
Really? I just want some portable oxygen tanks and a conserving regulator. That's not hard, demanding, or difficult. His first statement is a blatant lie and his second statement, also a lie, should never be shared by professionals about their customers.
My experience with Petersen Medical, in Orem, could not be more different. Zach was happy to come and make a delivery, even staying a little extra time to make sure everything was set up the way I wanted it in our spare bedroom.
Thank you, for people that want to do their job, that make working with them easier when you're in a critical state and need them!
Alpine's main office manager got a terse, but truthful accounting from me on Monday about why I would no longer be using their services and why I needed them to come pick up their equipment.
There's no one waiting for us at our house when we get there. Dale's absolutely exhausted, so I send him to bed while I wait. And wait. And wait.
When I've waited about an hour, I call the phone number that the hospital gave me for Alpine Home Medical. I reach their answering service but tell them I'm waiting for a delivery, so they connect me directly to him.
He's in Riverton, heading to our house; but it will take another 30-45 minutes to arrive.
Aaaarrrrrggggghhhh! Really? It's 4:00 a.m. I was told you'd be waiting for us? There's nothing I can do now but sit and wait some more.
He arrives in about 35 minutes as promised and quickly unloads the concentrator and sets it up. Where's the connection piece that I need for my BiPAP machine? Oh, he wasn't told I needed one (even though I was there in the hospital listening to them give the orders for it), so he'll have to bring one in the morning. That doesn't really help me tonight, but at least I'll get the oxygen I need.
After learning that I got rid of supplemental oxygen about six months ago (it was only that brief of a break I got from it? Darn!), he hurries through all of the paperwork. Do I need portable oxygen? No, I just need it at night, so the concentrator will work great.
He's pretty efficient and gone about 15 minutes later.
Whew! Time for bed!!!!
The next morning, a different driver for Alpine Home Medical brings by a connection piece that I need. Yay! We're in business. Or are we?
Late morning or early afternoon, I realize that I'm struggling to breathe even while sitting quietly at home. Crud! Not only do I need supplemental oxygen while I sleep, it looks like I'm going to need portable oxygen so that I can have it 24/7 as I go to work and church and run errands.
I call Alpine Home Medical's answering service again and tell them I need to speak with their delivery person. It's the same person that delivered the concentrator early this morning, but now he's decided that he doesn't want to do his job. At least, that's my only explanation for what ensues.
After a LOT of going back and forth between me and this man, a couple things are evident. 1) calling to arrange the delivery of portable oxygen isn't going to be the easy thing I thought it would be and 2) this guy doesn't want to come to my house today under any circumstances.
First I'm told that he can't just deliver oxygen tanks. They have to be on the order they received from the hospital. Luckily, I had called the ER department before I spoke with him; and Luke assured me that the order would cover portable oxygen as well. Not true, according to Mr. I-don't-want-to-work-on-a-Saturday.
So I have to give the delivery guy Luke's phone number so that Alpine can get the order they need. Whew! That's squared away. Then, I get another call from Alpine. He won't deliver portable oxygen tanks on a Saturday. Period. That's their company policy. Why the heck didn't you tell me that before we wasted all that time getting the order then?
If I knew I needed portable oxygen, why didn't I mention that earlier this morning when he delivered the concentrator? I didn't know that I needed it then, but I know it now. They delivered the concentrator on Saturday. Why can't they deliver portable O2 tanks on a Saturday? He tells me, "Because it's not an emergency."
Well, it is critical to me. I'm supposed to play a musical number and play the organ in Sacrament Meeting tomorrow and teach a Relief Society lesson. That's pretty hard to do when you feel like you're going to pass out because you're not getting enough oxygen. Plus, I need to go to work on Monday. How am I going to do all of that without portable oxygen tanks?
Finally, he acquiesces and agrees to bring the O2 tanks much later that evening. I don't care what time they arrive, as long as I have them for Sunday, so I'm good.
Then, I make the mistake of asking him to bring a conserving regulator for the tanks. It's a device that doesn't permit oxygen to escape from the tanks constantly but releases oxygen only when you inhale. That way, each tank lasts longer and I don't have to haul as many tanks to work.
Now the real trouble starts. He informs me "There's no way that you're getting a regulator today. Just give up on that idea. Even when I bring your tanks, I'm not going to bring you a regulator."
What's the problem? I've had oxygen before. I've never had to ask for the conserving device. In fact, the delivery people offered it to me. What in the world? Where is this attitude coming from? I'm the customer. You're in a very customer-oriented field, but you're giving me this crap?
Apparently, I need a specific order for the conserving regulator. "Okay. You've obviously talked to Luke and he got you the order you needed before. Can you call him again and ask him to add a regulator to the order? Do you really need me to play go-between for you? What's the problem? I can tell that you don't want to do your job on a Saturday. I understand that. I wouldn't be necessarily thrilled with the idea either, but it's your job! You're on call. It's up to you to be pleasant. It wasn't my choice that my lungs decided to give out on a Saturday. I'm so sorry for the inconvenience that you're having to go through. What about my inconvenience as the customer who's dealing with cancer for the fourth freaking time, chemo for the fifth time, lungs that are failing from the first time, and a whole slew of other affects? What about me? What about the person you're serving that you're supposed to be making life easier for?"
"Well, things have changed with the state and local laws in the past six months," I'm brusquely informed. "You can't just snap your fingers, write a list of things you want, and expect that I'll jump and deliver them."
He reluctantly agrees to call Luke to add a regulator to the order. However, he won't bring me one today. Instead, I have to wait for a respiratory therapist to come to my house and validate the settings on it before they'll give me one. "And they work only on weekdays. There's no way you're getting one today" is his parting, triumphant revelation.
Really? That's how you want to treat your customers? I've had it. I get on the phone with two other home medical companies. Even though they are both usually closed on Saturdays, they are happy to deliver portable oxygen tanks and a conserving regulator if they can get a copy of the order from Luke. And, they're both willing to call Luke and get that order faxed to them.
After figuring out which company is accepted by our insurance, I call Luke to thank him for all of his patience with taking phone calls today and helping me get the order I needed. When I mention that I'm going to switch companies, he's not surprised. "In fact, that guy from Alpine was complaining to me over the phone about you."
What? He told Luke that he'd already been to my house three times today. That I was the most demanding person he'd ever met, and that I would never be happy with their service.
Really? I just want some portable oxygen tanks and a conserving regulator. That's not hard, demanding, or difficult. His first statement is a blatant lie and his second statement, also a lie, should never be shared by professionals about their customers.
My experience with Petersen Medical, in Orem, could not be more different. Zach was happy to come and make a delivery, even staying a little extra time to make sure everything was set up the way I wanted it in our spare bedroom.
Thank you, for people that want to do their job, that make working with them easier when you're in a critical state and need them!
Alpine's main office manager got a terse, but truthful accounting from me on Monday about why I would no longer be using their services and why I needed them to come pick up their equipment.
ER Visit and Supplemental Oxygen
It's late, late Friday evening. Why do abrupt changes in my medical status always seem to occur on Friday evenings--just after Urgent Care has closed and the only place for some help is the local ER? I hate the ER. If you're dying--absolutely cannot breathe, having a heart attack, bleeding to death, been shot, etc.--the ER is the place to head. If it's anything else, they're just going to bother you by running every test known to the medical staff so they rule out anything egregious and cover themselves and the hospital from any future claims of negligence.
Anyway, it's late. I've fallen asleep and wake up. Suddenly I notice (or finally pay attention to the fact) that I'm having a lot of trouble breathing. Crud! I'm pretty sure I know what this means. There were no PEs in my lungs, so I probably need supplemental oxygen at night. But the only way I can get it now is by visiting the ER. I definitely don't want to try and sleep without oxygen because O2 levels naturally go down a little as I sleep.
Sorry, Dale. It looks like we get to visit an ER yet again. We head out of the door about 11:30 p.m.
Unfortunately, our insurance changed and now we have to visit Timpanogos Regional Hospital, instead of the American Fork Hospital ER, which is just 1.7 miles from our house. The AF staff is kind of used to seeing me and really listen to what I tell them. When I had the PEs before, I marched into the triage area and said, "I'm having trouble breathing. I just came from my primary care physician's office, where my O2 was in the low 70s, and my blood pressure and heart rate are elevated. I need you to rule out: 1) sepsis or some kind of gross infection throughout my whole body 2) low red blood cell counts that need an infusion 3) pneumonia and 4) pulmonary embolisms." They listened, ran just the tests they needed to for those four conditions, and found the PEs.
Not Timp!
Why can't they just listen to me? After all of this time and all of these treatments and their side effects, they think they know my body better than I do? Ha!
I walked in and told them that I was having trouble breathing, and that I needed supplemental oxygen. I'd had blood work drawn on Wednesday that was all good and a PE scan on Thursday that was negative. I just need supplemental oxygen.
Nope. They get to run their standard battery of tests: chest x-ray, blood work, and more blood work. Each time a test is run, we have to wait 30 minutes to an hour to get the results. They don't even trust the blood count results from Wednesday. What's a girl to do? So far, everything has been normal and not actionable.
So next we get to try a breathing treatment. They don't work. They never work. They just make me feel jittery. I tell that to the poor respiratory therapist who comes to administer the treatment. She listens and offers to go fight it out with the ER doctor. After all, whose insurance company wants to pay for something that I don't want or need? After another 30 minutes of waiting, the ER doctor is back, ready to argue for his point of view. You know what? The area around my chest does feel tighter and more constricted than usual. Fine. I'll let you try the breathing treatment--not to help my lungs but to, hopefully, loosen the constriction and resulting sharp stabbing pains around my entire thoracic cavity. 30 minutes later: one breathing treatment administered, bodily shaking occuring, and the stabbing pains in my chest are lessened by maybe one tiny degree. Are we finally finished?
Another 30 minutes goes by, and it's time for one last chat with the doctor. They could do one more thing (which now I cannot remember), but I know it's going to be useless. I know, and now I know that they know, what I've been saying all night and early morning. My body needs supplemental oxygen. Please! Can we just get a tank and go now? Off the oxygen, my O2 readings drop down to about 73. On oxygen, only about one liter, it jumps right back up to the low 90s. Please!
There's some more delay as they figure out what medical supply company my insurance prefers. They're recommending Alpine Home Medical, but they're having a hard time locating an oxygen tank from Alpine. Finally, someone on another floor finds one tank that isn't labeled. They give it to me (after about 5.5 hours of waiting) with the promise that someone from Alpine will be at our house waiting for us to arrive so that they can deliver a concentrator.
We're finally back home about 4:00 a.m. Luckily, today is Saturday and we get to sleep in just a bit. I'm exhausted!
Anyway, it's late. I've fallen asleep and wake up. Suddenly I notice (or finally pay attention to the fact) that I'm having a lot of trouble breathing. Crud! I'm pretty sure I know what this means. There were no PEs in my lungs, so I probably need supplemental oxygen at night. But the only way I can get it now is by visiting the ER. I definitely don't want to try and sleep without oxygen because O2 levels naturally go down a little as I sleep.
Sorry, Dale. It looks like we get to visit an ER yet again. We head out of the door about 11:30 p.m.
Unfortunately, our insurance changed and now we have to visit Timpanogos Regional Hospital, instead of the American Fork Hospital ER, which is just 1.7 miles from our house. The AF staff is kind of used to seeing me and really listen to what I tell them. When I had the PEs before, I marched into the triage area and said, "I'm having trouble breathing. I just came from my primary care physician's office, where my O2 was in the low 70s, and my blood pressure and heart rate are elevated. I need you to rule out: 1) sepsis or some kind of gross infection throughout my whole body 2) low red blood cell counts that need an infusion 3) pneumonia and 4) pulmonary embolisms." They listened, ran just the tests they needed to for those four conditions, and found the PEs.
Not Timp!
Why can't they just listen to me? After all of this time and all of these treatments and their side effects, they think they know my body better than I do? Ha!
I walked in and told them that I was having trouble breathing, and that I needed supplemental oxygen. I'd had blood work drawn on Wednesday that was all good and a PE scan on Thursday that was negative. I just need supplemental oxygen.
Nope. They get to run their standard battery of tests: chest x-ray, blood work, and more blood work. Each time a test is run, we have to wait 30 minutes to an hour to get the results. They don't even trust the blood count results from Wednesday. What's a girl to do? So far, everything has been normal and not actionable.
So next we get to try a breathing treatment. They don't work. They never work. They just make me feel jittery. I tell that to the poor respiratory therapist who comes to administer the treatment. She listens and offers to go fight it out with the ER doctor. After all, whose insurance company wants to pay for something that I don't want or need? After another 30 minutes of waiting, the ER doctor is back, ready to argue for his point of view. You know what? The area around my chest does feel tighter and more constricted than usual. Fine. I'll let you try the breathing treatment--not to help my lungs but to, hopefully, loosen the constriction and resulting sharp stabbing pains around my entire thoracic cavity. 30 minutes later: one breathing treatment administered, bodily shaking occuring, and the stabbing pains in my chest are lessened by maybe one tiny degree. Are we finally finished?
Another 30 minutes goes by, and it's time for one last chat with the doctor. They could do one more thing (which now I cannot remember), but I know it's going to be useless. I know, and now I know that they know, what I've been saying all night and early morning. My body needs supplemental oxygen. Please! Can we just get a tank and go now? Off the oxygen, my O2 readings drop down to about 73. On oxygen, only about one liter, it jumps right back up to the low 90s. Please!
There's some more delay as they figure out what medical supply company my insurance prefers. They're recommending Alpine Home Medical, but they're having a hard time locating an oxygen tank from Alpine. Finally, someone on another floor finds one tank that isn't labeled. They give it to me (after about 5.5 hours of waiting) with the promise that someone from Alpine will be at our house waiting for us to arrive so that they can deliver a concentrator.
We're finally back home about 4:00 a.m. Luckily, today is Saturday and we get to sleep in just a bit. I'm exhausted!
Friday, August 31, 2012
Pulmonary Embolism Scare
It's funny. I did change my medications. The nausea is much better, and the burning in my stomach is down to a level that I can function again. I'm feeling a little better and it's been only 1.5 days since the changes. Surely, I'm going to feel even better after another day or two.
In fact, I feel so much better that I'm back at work.
Then I get a call from Kathy. She's just checking on me to see how I'm doing. When I tell her I'm feeling better--enough so that I can function without tears again, I expect her to end the call. But she doesn't.
Apparently, Dr. Wendy is now concerned that I feel so terrible. She knows that I had pulmonary embolisms in the past from the chemo or the port or some combination of the two, and she wants to ensure that I don't have any again.
Can I be to the Central Utah Clinic imaging department in American Fork in twenty minutes? No, I'm at work in downtown Salt Lake. Okay, can I get there before they close--around 4:15? Yes, that I can do if Dale can leave work 30 minutes early.
Giggling, Kathy warns me not eat or drink anything in the next 45 minutes as I'm racing off to the scan. It's supposed to be fasting scan. Oh well.
We make it to the clinic on time, have the CT scan, and are told that we can wait in the office for the results or go home and Dr. Wendy's office will call with the results. I know what that means. It's code for the technicians didn't see anything alarming, so they'll let me leave while the radiologist reviews it. It's a pretty good sign, so we opt to leave.
When we haven't heard anything from Dr. Wendy's office by 5:30, I pick up the phone to call. It rings in my hand. It's Kathy. No PEs. No real explanation for why I feel so tired, but just take care of myself and be alert for any changes.
Okay. Check and check!
In fact, I feel so much better that I'm back at work.
Then I get a call from Kathy. She's just checking on me to see how I'm doing. When I tell her I'm feeling better--enough so that I can function without tears again, I expect her to end the call. But she doesn't.
Apparently, Dr. Wendy is now concerned that I feel so terrible. She knows that I had pulmonary embolisms in the past from the chemo or the port or some combination of the two, and she wants to ensure that I don't have any again.
Can I be to the Central Utah Clinic imaging department in American Fork in twenty minutes? No, I'm at work in downtown Salt Lake. Okay, can I get there before they close--around 4:15? Yes, that I can do if Dale can leave work 30 minutes early.
Giggling, Kathy warns me not eat or drink anything in the next 45 minutes as I'm racing off to the scan. It's supposed to be fasting scan. Oh well.
We make it to the clinic on time, have the CT scan, and are told that we can wait in the office for the results or go home and Dr. Wendy's office will call with the results. I know what that means. It's code for the technicians didn't see anything alarming, so they'll let me leave while the radiologist reviews it. It's a pretty good sign, so we opt to leave.
When we haven't heard anything from Dr. Wendy's office by 5:30, I pick up the phone to call. It rings in my hand. It's Kathy. No PEs. No real explanation for why I feel so tired, but just take care of myself and be alert for any changes.
Okay. Check and check!
Wednesday, August 29, 2012
Feeling Like Crud!
I'm so tired. I'm in so much pain. My stomach has a fire burning across it almost constantly. I don't ever remember feeling like this from chemo--especially from a chemo that's supposed to be kinder and gentler.
Okay, I give up. I won't ignore all of this crud any longer. I've got to find out what's causing it and how to fix it.
* Nausea? The promethazine and zofran (ondansestron) combination really isn't working. It just knocks me out, so surely we can try something else. Check, I have a plan of attack.
* Low energy? Maybe my blood counts are really, really low and that's why I'm so lethargic. Fine. We can test that from a quick blood draw from my port. Check.
* Bone pain? Oh yes. There's some secret combination of drugs that's supposed to help that, but I can't remember what it is. I know who to ask though. Check.
* Stomach pain? Think Trish. What's causing my gut to be on fire? Hmmmm. Wonder if there's anything I can do for bowel trouble? Check.
Those are the biggies. Now I have an action plan for each of them, so I go hobbling into Dr. Wendy's office and ask to speak to Kathy. After talking with her through each item, I've convinced them to check my blood cell counts, order a different antiemetic, reveal the combination of one Claritin and one Aleve every 12 hours for bone pain (who would ever guess that it's that combination that helps bone pain the most?), and recommend four different things to try for tummy troubles.
I'm feeling better just knowing that we're going to try some different things and that I don't have to live with all of this bothersomeness anymore.
After about 10 minutes of waiting for the results of the blood counts, I'm not so sure. They're great--even just a bit high (but not concerningly so).
Now what? I guess it's time to go home, change to the new medications, and see what life has next on its agenda.
Okay, I give up. I won't ignore all of this crud any longer. I've got to find out what's causing it and how to fix it.
* Nausea? The promethazine and zofran (ondansestron) combination really isn't working. It just knocks me out, so surely we can try something else. Check, I have a plan of attack.
* Low energy? Maybe my blood counts are really, really low and that's why I'm so lethargic. Fine. We can test that from a quick blood draw from my port. Check.
* Bone pain? Oh yes. There's some secret combination of drugs that's supposed to help that, but I can't remember what it is. I know who to ask though. Check.
* Stomach pain? Think Trish. What's causing my gut to be on fire? Hmmmm. Wonder if there's anything I can do for bowel trouble? Check.
Those are the biggies. Now I have an action plan for each of them, so I go hobbling into Dr. Wendy's office and ask to speak to Kathy. After talking with her through each item, I've convinced them to check my blood cell counts, order a different antiemetic, reveal the combination of one Claritin and one Aleve every 12 hours for bone pain (who would ever guess that it's that combination that helps bone pain the most?), and recommend four different things to try for tummy troubles.
I'm feeling better just knowing that we're going to try some different things and that I don't have to live with all of this bothersomeness anymore.
After about 10 minutes of waiting for the results of the blood counts, I'm not so sure. They're great--even just a bit high (but not concerningly so).
Now what? I guess it's time to go home, change to the new medications, and see what life has next on its agenda.
Tuesday, August 28, 2012
Peripheral Neuropathy and Nausea
Silly me! I guess I was hoping for no side effects because Adcetris is kinder and more gentle than other chemo drugs. Ha! It is still chemo, Trish. Time to pull your head out of the sand and face facts.
So that stomach rumbling, growling, and intermittent nausea isn't from the antibiotic that I've been on but finished Sunday? Nope. I figure that out just yesterday about mid-afternoon.
That terrible metallic taste in my mouth that I've been trying to ignore? Yea, that's chemo too.
And the strange sensations, almost like small electrical charges, in my fingers? Ka-ching! Welcome to the wonderland of chemo again.
I haven't been taking my anti-nausea drugs. (I didn't want to need them this time, so I've just been dealing with it.) But I start taking ondansetron (Zofran) every six hours. That one is no problem to take, but it's not working by itself. Crud!
Now I have to start adding promethazine (Phenergan) in the schedule. And it knocks me out too. By 7 p.m., I'm ready to sleep through the night.
Apparently, our neighbors had a huge kitchen fire just a few feet away from where I'm napping on the couch. At least four big fire engines came, sirens blaring; but I didn't hear anything.
I hate not having the full use of my brain. I don't want to sleep away what's left of my life. I've got to figure out something else that will work. Crud!
So that stomach rumbling, growling, and intermittent nausea isn't from the antibiotic that I've been on but finished Sunday? Nope. I figure that out just yesterday about mid-afternoon.
That terrible metallic taste in my mouth that I've been trying to ignore? Yea, that's chemo too.
And the strange sensations, almost like small electrical charges, in my fingers? Ka-ching! Welcome to the wonderland of chemo again.
I haven't been taking my anti-nausea drugs. (I didn't want to need them this time, so I've just been dealing with it.) But I start taking ondansetron (Zofran) every six hours. That one is no problem to take, but it's not working by itself. Crud!
Now I have to start adding promethazine (Phenergan) in the schedule. And it knocks me out too. By 7 p.m., I'm ready to sleep through the night.
Apparently, our neighbors had a huge kitchen fire just a few feet away from where I'm napping on the couch. At least four big fire engines came, sirens blaring; but I didn't hear anything.
I hate not having the full use of my brain. I don't want to sleep away what's left of my life. I've got to figure out something else that will work. Crud!
Friday, August 24, 2012
The Chemo Plan and First Dose
So here's the plan for using Adcetris (brentuximab vedotin):
* Starting today, every three weeks, for a maximum of 16 doses (16x3=48 weeks, almost a year. I hope we don't go that long) until the maximum effect is reached (Hodgkins is gone or reaches a plateau and is no longer reducing.)
* We'll start the infusion with Benadryl. Even though the literature doesn't call for it, Dr. Wendy wants to ensure that I don't have some sort of allergic reaction to the drug. (Uh oh. That stuff knocks me out--hard!)
* We'll also infuse Zofran (an anti-nausea medication).
* We'll repeat CT scans every 2 doses to measure any progress.
* It should be a kinder and more gentle chemo than I've ever had before because it's specifically targeting Hodgkins cells. Of course, there will be some collateral damage along the way.
It's all pretty standard information to me. When Kathy comes to walk through what to expect and answer any questions, she has a copy of the Adcetris patient pamphlet (which I've already read on the Web). She doesn't have any other information for me because it's so new and no one in Utah County that she knows of has ever used it.
The Benadryl takes about an hour to infuse; the Zofran takes another 30 minutes. Finally we're ready for the good stuff (or is that bad stuff). The Adcetris takes another 30 minutes.
Dale and I are playing cribbage (our standard chemo activity), but that darn Benadryl is really messing with my head. I can't concentrate anymore. All I want to do is sleep.
Even though we came to Dr. Wendy's at 9:30 this morning and the chemo takes only 30 minutes to infuse, we don't leave her office until almost 2 p.m. Whew! I guess times really flies when you're having fun. (I need to redefine what having fun is in my life!)
When we get home, Dale's trying to plan meals for the weekend. However, while trying to answer one question, I've fallen asleep--sometimes in the middle of a word--about 10 times. He gives up and lets me sleep.
Darn that Benadryl! I want to see if we can try the chemo without it next time. How am I supposed to work from home if I can't stay awake?
So next chemo appointment is Wednesday, September 12 at 9:40 a.m. One day--or dose--at a time.
* Starting today, every three weeks, for a maximum of 16 doses (16x3=48 weeks, almost a year. I hope we don't go that long) until the maximum effect is reached (Hodgkins is gone or reaches a plateau and is no longer reducing.)
* We'll start the infusion with Benadryl. Even though the literature doesn't call for it, Dr. Wendy wants to ensure that I don't have some sort of allergic reaction to the drug. (Uh oh. That stuff knocks me out--hard!)
* We'll also infuse Zofran (an anti-nausea medication).
* We'll repeat CT scans every 2 doses to measure any progress.
* It should be a kinder and more gentle chemo than I've ever had before because it's specifically targeting Hodgkins cells. Of course, there will be some collateral damage along the way.
It's all pretty standard information to me. When Kathy comes to walk through what to expect and answer any questions, she has a copy of the Adcetris patient pamphlet (which I've already read on the Web). She doesn't have any other information for me because it's so new and no one in Utah County that she knows of has ever used it.
The Benadryl takes about an hour to infuse; the Zofran takes another 30 minutes. Finally we're ready for the good stuff (or is that bad stuff). The Adcetris takes another 30 minutes.
Dale and I are playing cribbage (our standard chemo activity), but that darn Benadryl is really messing with my head. I can't concentrate anymore. All I want to do is sleep.
Even though we came to Dr. Wendy's at 9:30 this morning and the chemo takes only 30 minutes to infuse, we don't leave her office until almost 2 p.m. Whew! I guess times really flies when you're having fun. (I need to redefine what having fun is in my life!)
When we get home, Dale's trying to plan meals for the weekend. However, while trying to answer one question, I've fallen asleep--sometimes in the middle of a word--about 10 times. He gives up and lets me sleep.
Darn that Benadryl! I want to see if we can try the chemo without it next time. How am I supposed to work from home if I can't stay awake?
So next chemo appointment is Wednesday, September 12 at 9:40 a.m. One day--or dose--at a time.
Thursday, August 23, 2012
Port Insertion
A slight change of plans. Instead of getting the port inserted on Friday, then heading straight over for chemo, Dr. Wendy wants a little more time for everyone to figure out how to use this new drug.
Am I willing to get my port inserted on Thursday morning, then start chemo on Friday first thing in the morning? Sure. I'm flexible at this point, as long as we're moving forward.
So, Miriam and I head over to the Physicians Plaza in front of Timpanogos Regional Hospital on Thursday morning around 7:30. They want me there by 8 so the insertion can start at 9 a.m. I don't know why they want me there so early, but I'll comply.
This time is weird though. No call to let me know where to go or how to prepare (no eating or drinking after midnight kinds of information). Luckily (or is that unluckily?), this is the third time I'll have a port inserted so I pretty much know what to do.
We arrive at the heart cath lab, and it's pretty obvious that they've never dealt with someone like me before and are not used to inserting ports.
They want three vials of blood and to start an IV before the procedure. Pretty standard practice, but not for me anymore. It took BMT six pokes to draw two vials of blood, but they were used to chemo veins.
It takes over an hour, seven sticks, an ultrasound machine, and two different "expert" phlebotomists to FINALLY start an IV. The whole time I'm saying "You don't really need an IV. I'm not going to have any sedation. And I just had labs drawn at Dr. Wendy's office on July 31." That's not good enough. Hospital protocol says I have to have an IV and labs drawn within 7 days of the procedure.
During all the pokes and digging into my arms, I did have a unique experience to add to my repertoire. While fishing for a deep vein in my right arm that showed on ultrasound, an intense electrical shock traveled down my arm and zinged hard into my right ring finger. Never had that happen before. It's intensity surprised me so much that I jerked my entire hand in a involuntary reflex sort of way. I knew as soon as I felt it that the tech. had hit a nerve, but what a strange feeling!
By the time they finally insert the IV into one of my wrist veins (ouch again!), they've all given up on the hope of drawing any blood from me. ("That IV is so tenuous at best, that I'm not risking it by trying to draw blood from it first.)
Can you see why I asked for and need the port people? If you absolutely need the blood, wait until the port is inserted and then draw from it.
A port insertion is supposed to be fairly easy and fast, so I mistakenly and somewhat brazenly tell Miriam we'll be out of the hospital by 11. Huh! Not so fast, Trish.
First the whole IV fiasco puts us behind by an hour. Then, Timp. isn't used to doing port insertions so it takes about 90 minutes, instead of the usual 30 or 45. Then, they want to keep me afterward for observation for two hours.
What's the deal? I didn't have any sedation. I was absolutely fine and walked out of the procedure room on my own two legs. I guess the nurses at the front desk were really in shock over seeing me walk out. They'd never had that happen before.
They just want to observe me and ensure that the port site isn't going to bleed because they were unable to draw their labs beforehand. Fine, but will you please pull the stupid IV. It's burning and stinging worse than my neck and chest are. Nope. Hospital policy is to leave it in until you're discharged.
Crud! Another hour and a half of more waiting time just got added to my schedule.
In the meantime, can I get some Ibuprofen or something for pain? The IV in my wrist, another attempted IV site that blew, and my neck are all stinging and burning.
"Oh, we're not used to dispensing medications and don't have any here. We'll have to call the doctor to get approval, then order the medication from the hospital pharmacy next door, and then go pick it up." We might be able to have something to you in about twenty minutes. Lovely! This place sucks for port insertions!
And they don't listen to their patients very well. I told them that AF found it most helpful to have me partially sitting up. That position assists gravity in pulling my chest away from my neck and giving the radiologist the most room to work with (because there's about 1.5" total anyway between my neck and the start of my chest). Also, I'm allergic to tegraderm (those clear plastic bandages that doctors like to cover surgical sites with) and don't need the port for anything else today so don't leave it accessed. AND I have tachycardia (fast heart rate), so don't expect my heart rate to ever be under 100 bpm unless I'm asleep. (The doctor wanted to be called any time my heart rate was over 100--ha!)
They didn't listen or weren't prepared to deal with any of those things, so I suffered through it as best as possible.
Then, when I was being discharged, the papers are obviously the standard for a heart cath. patient. Mine read, "If you were told that you have heart failure today. . ." What the! There's nothing on the papers about keeping the incision site in my neck and chest clean and dry for X number of days or anything related to a port insertion, but now I know what to do if my heart is in failure. Very helpful. . .NOT!
And no prescription for pain pills. What? Let me stuff a 1.5" cubed piece of plastic into your chest and dig a tunnel for the connecting sheath from the plastic to attach to your neck vein and then into your heart with several internal and external sutures and tell me you don't need pain meds. Can I please have just three: one to help me sleep tonight, one for tomorrow because day after is usually a little worse, and one for tomorrow night for sleep? No. We don't do that. You might want to contact your oncologist because she knows you better and can judge that better.
Look! I just walked out of the procedure room by myself, after having no sedation. Clearly, I'm pretty tolerant of pain. If I'm telling you that I want three pills, is that really too much to ask? Apparently, for them, it is.
Luckily, when I checked our medicine cabinet at home, I still had three pills left over from the port insertion that was done just about a year ago.
Poor Miriam. What was supposed to be an easy, 1.5 hour hospital in-and-stay ended up being a 6 hour torture fest. She did hear two of the staff, including the doctor talking in the hallway after the procedure. Apparently, they think I'm the perfect person to have with them if they were ever in a bar fight--because I'm so tough. Hilarious!
Whew! I didn't realize that today was going to be such a fight just to get a port inserted for chemo!
Am I willing to get my port inserted on Thursday morning, then start chemo on Friday first thing in the morning? Sure. I'm flexible at this point, as long as we're moving forward.
So, Miriam and I head over to the Physicians Plaza in front of Timpanogos Regional Hospital on Thursday morning around 7:30. They want me there by 8 so the insertion can start at 9 a.m. I don't know why they want me there so early, but I'll comply.
This time is weird though. No call to let me know where to go or how to prepare (no eating or drinking after midnight kinds of information). Luckily (or is that unluckily?), this is the third time I'll have a port inserted so I pretty much know what to do.
We arrive at the heart cath lab, and it's pretty obvious that they've never dealt with someone like me before and are not used to inserting ports.
They want three vials of blood and to start an IV before the procedure. Pretty standard practice, but not for me anymore. It took BMT six pokes to draw two vials of blood, but they were used to chemo veins.
It takes over an hour, seven sticks, an ultrasound machine, and two different "expert" phlebotomists to FINALLY start an IV. The whole time I'm saying "You don't really need an IV. I'm not going to have any sedation. And I just had labs drawn at Dr. Wendy's office on July 31." That's not good enough. Hospital protocol says I have to have an IV and labs drawn within 7 days of the procedure.
During all the pokes and digging into my arms, I did have a unique experience to add to my repertoire. While fishing for a deep vein in my right arm that showed on ultrasound, an intense electrical shock traveled down my arm and zinged hard into my right ring finger. Never had that happen before. It's intensity surprised me so much that I jerked my entire hand in a involuntary reflex sort of way. I knew as soon as I felt it that the tech. had hit a nerve, but what a strange feeling!
By the time they finally insert the IV into one of my wrist veins (ouch again!), they've all given up on the hope of drawing any blood from me. ("That IV is so tenuous at best, that I'm not risking it by trying to draw blood from it first.)
Can you see why I asked for and need the port people? If you absolutely need the blood, wait until the port is inserted and then draw from it.
A port insertion is supposed to be fairly easy and fast, so I mistakenly and somewhat brazenly tell Miriam we'll be out of the hospital by 11. Huh! Not so fast, Trish.
First the whole IV fiasco puts us behind by an hour. Then, Timp. isn't used to doing port insertions so it takes about 90 minutes, instead of the usual 30 or 45. Then, they want to keep me afterward for observation for two hours.
What's the deal? I didn't have any sedation. I was absolutely fine and walked out of the procedure room on my own two legs. I guess the nurses at the front desk were really in shock over seeing me walk out. They'd never had that happen before.
They just want to observe me and ensure that the port site isn't going to bleed because they were unable to draw their labs beforehand. Fine, but will you please pull the stupid IV. It's burning and stinging worse than my neck and chest are. Nope. Hospital policy is to leave it in until you're discharged.
Crud! Another hour and a half of more waiting time just got added to my schedule.
In the meantime, can I get some Ibuprofen or something for pain? The IV in my wrist, another attempted IV site that blew, and my neck are all stinging and burning.
"Oh, we're not used to dispensing medications and don't have any here. We'll have to call the doctor to get approval, then order the medication from the hospital pharmacy next door, and then go pick it up." We might be able to have something to you in about twenty minutes. Lovely! This place sucks for port insertions!
And they don't listen to their patients very well. I told them that AF found it most helpful to have me partially sitting up. That position assists gravity in pulling my chest away from my neck and giving the radiologist the most room to work with (because there's about 1.5" total anyway between my neck and the start of my chest). Also, I'm allergic to tegraderm (those clear plastic bandages that doctors like to cover surgical sites with) and don't need the port for anything else today so don't leave it accessed. AND I have tachycardia (fast heart rate), so don't expect my heart rate to ever be under 100 bpm unless I'm asleep. (The doctor wanted to be called any time my heart rate was over 100--ha!)
They didn't listen or weren't prepared to deal with any of those things, so I suffered through it as best as possible.
Then, when I was being discharged, the papers are obviously the standard for a heart cath. patient. Mine read, "If you were told that you have heart failure today. . ." What the! There's nothing on the papers about keeping the incision site in my neck and chest clean and dry for X number of days or anything related to a port insertion, but now I know what to do if my heart is in failure. Very helpful. . .NOT!
And no prescription for pain pills. What? Let me stuff a 1.5" cubed piece of plastic into your chest and dig a tunnel for the connecting sheath from the plastic to attach to your neck vein and then into your heart with several internal and external sutures and tell me you don't need pain meds. Can I please have just three: one to help me sleep tonight, one for tomorrow because day after is usually a little worse, and one for tomorrow night for sleep? No. We don't do that. You might want to contact your oncologist because she knows you better and can judge that better.
Look! I just walked out of the procedure room by myself, after having no sedation. Clearly, I'm pretty tolerant of pain. If I'm telling you that I want three pills, is that really too much to ask? Apparently, for them, it is.
Luckily, when I checked our medicine cabinet at home, I still had three pills left over from the port insertion that was done just about a year ago.
Poor Miriam. What was supposed to be an easy, 1.5 hour hospital in-and-stay ended up being a 6 hour torture fest. She did hear two of the staff, including the doctor talking in the hallway after the procedure. Apparently, they think I'm the perfect person to have with them if they were ever in a bar fight--because I'm so tough. Hilarious!
Whew! I didn't realize that today was going to be such a fight just to get a port inserted for chemo!
Tuesday, August 21, 2012
Finally--a Treatment Plan
Dr. Asch, Dr. Wendy, and I all agree that using the newest drug, Adcetris (brentuximab vedotin) is probably the correct course of action (even if we don't do the second transplant), so I call Dr. Wendy's office to let them know.
Finally, we have a treatment plan after about eight weeks of waiting!
Although Kathy tells me that they have to order brentuximab, they've never used it before at either the American Fork or Provo clinic, and they don't know how long it will take.
Crud! I don't want more waiting. Plus, we're waiting for the port insertion to be scheduled. More waiting.
I tell her that I know I'm strange (Dr. Asch called me one-of-a-kind at our meeting yesterday), but I'm begging to start chemo as soon as possible. Kathy laughs, agrees that my begging for chemo is a little strange, but says she'll do everything possible to make it happen.
Less than two hours later, she calls to tell me that the port is scheduled for Friday morning at 9 a.m., that the brentuximab should arrive on Thursday, and that we'll start chemo on Friday--immediately after the port insertion.
Whew! A more finalized plan to work with. As soon as I hear those details, some of the stress I've been carrying for about eight weeks dissipates.
Whew!
Finally, we have a treatment plan after about eight weeks of waiting!
Although Kathy tells me that they have to order brentuximab, they've never used it before at either the American Fork or Provo clinic, and they don't know how long it will take.
Crud! I don't want more waiting. Plus, we're waiting for the port insertion to be scheduled. More waiting.
I tell her that I know I'm strange (Dr. Asch called me one-of-a-kind at our meeting yesterday), but I'm begging to start chemo as soon as possible. Kathy laughs, agrees that my begging for chemo is a little strange, but says she'll do everything possible to make it happen.
Less than two hours later, she calls to tell me that the port is scheduled for Friday morning at 9 a.m., that the brentuximab should arrive on Thursday, and that we'll start chemo on Friday--immediately after the port insertion.
Whew! A more finalized plan to work with. As soon as I hear those details, some of the stress I've been carrying for about eight weeks dissipates.
Whew!
Monday, August 20, 2012
Second Transplant (Allogeneic) Notes
I met with the Bone Marrow Transplant (BMT) team at LDS Hospital to discuss the possibility of a second transplant--this time with a donor's cells. It's been less than a year since the allogeneic transplant (using my own cells) was done (August 26, 2011).
I really liked my odds a year ago with a 75% chance that the BMT would cure my cancer. No more chemo forever was my mantra.
Now, less than a year later, I'm having another conversation with the same team. Don't they offer frequent flyer or rewards programs? Pay for one transplant, get the second half off?
I start the meeting by telling Dr. Asch and Rachael Beers that I'm listening to them only under protest. "Why protest?", Dr. Asch wants to know. Because the first BMT was supposed to cure me forever. I shouldn't have to be here and especially so soon after the transplant.
She agrees with me, but it's not much comfort. So here we go.
I'm totally against the idea of a second transplant. I cannot imagine being incarcerated into that small hospital room for another 3-4 weeks, and feeling so sick and weak from the high-dose chemo. I feel that I've finally regained about 85% of my energy now, and the transplant was just a year ago. If I'm supposed to be so fragile still that they think my body can handle that stress all over again?
Plus, I lost my job as a direct result of the transplant and just barely found another one. I had to carry around supplemental oxygen for six months after the first transplant, and was pretty much sequestered for three months during cold and flu season last winter.
No, no, no! I can't see myself enduring that torture again!
But wait, an allogeneic, reduced intensity, non-myeloblative transplant might be better and it could be a lot worse.
Better because it doesn't involve inpatient hospital stays (except to treat complications). Much worse because the graft-versus-host-disease can be quite brutal and require infinitely more medications and cause even more severe complications.
It's all a balancing game: allowing enough of the graft-versus-Hodgkins to kill the cancer or keep it at bay but not allowing the graft-verses-host-disease enough latitude to kill me. Oh boy.
We're not even sure we can find a matching (or half matching donor for a haplo transplant, which might be better for me) donor among my siblings and we're not sure my body is a good candidate (can survive) another transplant, but at least I'm willing to start the process and see how far we get.
To start the genetic matching process, I agree to donate some blood. However, after five attempts by three different phlebotomists that work with chemo-friend veins all of the time, the BMT team finally gives up and calls in the NICU specialist. After several hot compresses, flicking several veins, and one more failed attempt, she's finally able to draw from my wrist. (Ouch, I hate that location because it stings and burns much more than a regular vein stick.)
Hmmmm. I call Dr. Wendy's office and tell them I want a port before we do chemo. If it took skilled technicians who are used to working with chemo veins that much effort, I need a port; and Dr. Wendy's office didn't even offer or mention one to me this time.
I really liked my odds a year ago with a 75% chance that the BMT would cure my cancer. No more chemo forever was my mantra.
Now, less than a year later, I'm having another conversation with the same team. Don't they offer frequent flyer or rewards programs? Pay for one transplant, get the second half off?
I start the meeting by telling Dr. Asch and Rachael Beers that I'm listening to them only under protest. "Why protest?", Dr. Asch wants to know. Because the first BMT was supposed to cure me forever. I shouldn't have to be here and especially so soon after the transplant.
She agrees with me, but it's not much comfort. So here we go.
I'm totally against the idea of a second transplant. I cannot imagine being incarcerated into that small hospital room for another 3-4 weeks, and feeling so sick and weak from the high-dose chemo. I feel that I've finally regained about 85% of my energy now, and the transplant was just a year ago. If I'm supposed to be so fragile still that they think my body can handle that stress all over again?
Plus, I lost my job as a direct result of the transplant and just barely found another one. I had to carry around supplemental oxygen for six months after the first transplant, and was pretty much sequestered for three months during cold and flu season last winter.
No, no, no! I can't see myself enduring that torture again!
But wait, an allogeneic, reduced intensity, non-myeloblative transplant might be better and it could be a lot worse.
Better because it doesn't involve inpatient hospital stays (except to treat complications). Much worse because the graft-versus-host-disease can be quite brutal and require infinitely more medications and cause even more severe complications.
It's all a balancing game: allowing enough of the graft-versus-Hodgkins to kill the cancer or keep it at bay but not allowing the graft-verses-host-disease enough latitude to kill me. Oh boy.
We're not even sure we can find a matching (or half matching donor for a haplo transplant, which might be better for me) donor among my siblings and we're not sure my body is a good candidate (can survive) another transplant, but at least I'm willing to start the process and see how far we get.
To start the genetic matching process, I agree to donate some blood. However, after five attempts by three different phlebotomists that work with chemo-friend veins all of the time, the BMT team finally gives up and calls in the NICU specialist. After several hot compresses, flicking several veins, and one more failed attempt, she's finally able to draw from my wrist. (Ouch, I hate that location because it stings and burns much more than a regular vein stick.)
Hmmmm. I call Dr. Wendy's office and tell them I want a port before we do chemo. If it took skilled technicians who are used to working with chemo veins that much effort, I need a port; and Dr. Wendy's office didn't even offer or mention one to me this time.
Sunday, August 19, 2012
The Waiting Game
I wish I could find a calendar that I could copy and annotate. I want to record all of the waiting time that's associated with just this occurrence of cancer.
* About the middle of April, I feel a small bump in the right crease of my leg, at the very top. Drat!
* Dale and I wait until Thursday, April 19, to visit my primary care physician to see what they think of it. I don't want to tell Dr. Wendy tomorrow that I felt a lump but didn't do anything about it. That wouldn't be wise given my history. The PA on call doesn't think it has anything to do with lymph nodes or cancer. It feels harder than that. I'm told just to watch the area and maybe get an xray of the area if it doesn't resolve soon.
* Friday, April 20, I meet for a regular follow up with Dr. Wendy. She can't really feel anything, so I'm told once again to watch the area.
End of April, the bump actually seems to subside and eventually go away. Whew! Maybe it was just a swollen lymph node from an infection my body was fighting. (Or a preview of what's to come?) No one knows.
* Wednesday, May 23, and time for a standard follow-up appointment with Dr. Wendy. No bump this time. I'm due for routine scans before my next appointment. I'll just wait and see what the scans pull up next month because I think I can feel the bump again. However, it's much harder than any other cancerous lymph node that I've ever felt.
* Monday, June 11, Dale starts a new job and we'll have new health insurance starting July 1. It doesn't make sense to pay for a CT scan now when new insurance will start in a few short weeks, so I postpone the CT scan.
* Wednesday, June 20, another follow up appointment with Dr. Wendy. No scans to consult, but the bump is definitely there. We'll wait for the new insurance and then schedule the scan.
We make sure to sign up for health insurance coverage through Dale's employer about five days before it's due so that we're sure we'll have coverage starting on July 1st and can schedule a CT scan.
* July 1-13, no news from Dale's employer or health insurance. After several calls to both places, we're told that Anthem Blue Cross Blue Shield (BC/BS) accepts new enrollment information only during the third week of each month, so we'll have to wait until the week of July 15 until they start processing our information. Dr. Wendy's office makes several calls to BC/BS, but we're not in the system yet. And they won't give the pre-approval for the CT scan until we're in the system. Wait, wait, wait!
* Week of July 15. The insurance information should go through this week. After several calls, they FINALLY have ID numbers for us about Thursday, July 19. Now, we can start getting a CT scan authorized and scheduled.
It's been about three months since I first felt that lump that eventually went away and then came back!
* Friday, July 27, the CT is finally scheduled and performed at the Central Utah Clinic in American Fork. Now wait the weekend until the results are in.
* Tuesday, July 31, appointment with Dr. Wendy--the one where she asks if I've been pouring fertilizer into my lymph nodes. She actually had the results Friday afternoon but didn't want to ruin my weekend, so she just waited. What's the next step? What do we need to wait for now? For BC/BS to give pre-authorization for a PET scan.
Drat! Dale didn't come with me to this appointment. Suddenly, I'm wishing he had. So I cry to Jackie and Cindy. I actually lie or deliberately try to put off answering his question of how my appointment with Dr. Wendy went because I'm not going to tell my husband over the phone that I probably have cancer yet again!
* Thursday, August 2. It's been 2 full days since I saw Dr. Wendy and no PET authorization yet, so I call BC/BS to see what the expected wait time is for a PET authorization. Their answer? 5 extremely long days, unless Dr. Wendy originally made an urgent request, then the wait is only 2 days!
I can't do this anymore. The waiting is killing me. I hoped the CT scan would come back and show some sort of bone protrusion, not a swollen lymph node. Drat!
I call Dr. Wendy's office--forgetting that she and her staff are out on Thursdays. I am eventually transferred to a medical coordinator for a different oncologist in the office. After patiently listening to my partial melt-down from all of the waiting, she agrees to call the insurance and see what she can do.
* Sunday, August 5. I ask almost the whole ward and all family members to join with Dale and I in fasting for me. How many times can one person beat Hodgkins? I fear that I'm fast approaching that limit.
* Monday, August 6. It's been almost an entire week since I saw Dr. Wendy and a PET is still not authorized or scheduled as far as I know. After calling Dr. Wendy's office again, I'm finally told that we have the authorization. Now we're waiting for the Huntsman Cancer Hospital to schedule the PET. They're notoriously slower with scheduling because they don't trust the initial authorization that the insurance gives the doctor's offices, so they have to call the insurance company themselves to verify the information personally. Tearfully, I ask if we can make sure that we get an appointment--any appointment, for any time of day--SOMETIME before this week is out.
AAARRRRGGGHHH! The What If game is really wreaking havoc on me now, and it's difficult to sleep.
* Tuesday, August 7. The PET is scheduled for 7 a.m. Friday morning. At last!
* Friday, August 10. PET scan is done, but no hints if any areas lit up. More waiting. I try to work, but end up leaving two hours later. Huntsman said that Dr. Wendy would have the results today, so I'm going to try and get those results before the weekend comes and I have to endure more waiting.
Drat! No such luck. I feel like I'm having a partial nervous breakdown in Dr. Wendy's office while crying to Kathy that the waiting gets harder and harder with each occurrence. Somehow, you would think I'd get more seasoned and patient with the process, but I find the opposite is true. I have a good idea of what's coming, and I just want to get to the known facts. Stop the waiting game, please!
It isn't a fun weekend. In fact, I cried into Dale's arms one night. Please, stop the torture and just tell me what we're dealing with this time and what we're going to do about it. Please!
* Monday, August 13. I'm at work. April's on the phone, telling me that Dr. Wendy wants to talk to me. FINALLY! Except the news isn't what I'm hoping for. She rattles off so many areas that show active disease (lit up or have cancer) that I can't record them all. She's going to talk with Dr. Asch at LDS Hospital about any other ideas their team might have for me and call me Wednesday. Her plan is to start chemo either Friday or Monday. More waiting.
* Wednesday, August 15. Dr. Wendy's office calls to say that Dr. Asch presented my case at the Tumor Review Board meeting this morning, and I should expect to hear from someone at LDS sometime later today.
Except there's a problem. I have training scheduled from 1-3:30, and I'm the designated note taker for a very complicated process. At least three other people are relying on my notes. Then, I have a meeting from 3:30-4:30 that I'm responsible for leading. I've already postponed that meeting once from Monday (because it was supposed to happen right after I heard Dr. Wendy's long list of areas that lit up), so I'm not postponing it again.
My schedule gives me about thirty minutes to talk to someone right now, so I call the bone marrow transplant team. Rachel (the coordinator who's guided me through all the phases of collecting the stem cells and the transplant and talked with me so much that I feel our relationship is more like personal friends than professionals) is talking to me, explaining that Dr. Asch wants to meet with me to discuss the possibilities of an allogeneic (cells from a matching donor) transplant. However, she can't meet with me until Monday (August 20) afternoon, so there's going to be no chemo or treatment until after I see her. It's my choice whether I meet with her or not. I don't want another transplant at this point in time, but I do trust her opinion and gathering more information can't hurt, so I reluctantly agree to wait longer so that Dale and I can talk with her on Monday.
Wait, wait, wait.
I don't want to wait, and I really don't want to hear about the possibilities of another, more intense and more difficult transplant, but I wait--yet again.
It's now been four months since I first felt that initial lump. Oh, help! Do you think I can start treatment sometime during this next week. Please?!!
* About the middle of April, I feel a small bump in the right crease of my leg, at the very top. Drat!
* Dale and I wait until Thursday, April 19, to visit my primary care physician to see what they think of it. I don't want to tell Dr. Wendy tomorrow that I felt a lump but didn't do anything about it. That wouldn't be wise given my history. The PA on call doesn't think it has anything to do with lymph nodes or cancer. It feels harder than that. I'm told just to watch the area and maybe get an xray of the area if it doesn't resolve soon.
* Friday, April 20, I meet for a regular follow up with Dr. Wendy. She can't really feel anything, so I'm told once again to watch the area.
End of April, the bump actually seems to subside and eventually go away. Whew! Maybe it was just a swollen lymph node from an infection my body was fighting. (Or a preview of what's to come?) No one knows.
* Wednesday, May 23, and time for a standard follow-up appointment with Dr. Wendy. No bump this time. I'm due for routine scans before my next appointment. I'll just wait and see what the scans pull up next month because I think I can feel the bump again. However, it's much harder than any other cancerous lymph node that I've ever felt.
* Monday, June 11, Dale starts a new job and we'll have new health insurance starting July 1. It doesn't make sense to pay for a CT scan now when new insurance will start in a few short weeks, so I postpone the CT scan.
* Wednesday, June 20, another follow up appointment with Dr. Wendy. No scans to consult, but the bump is definitely there. We'll wait for the new insurance and then schedule the scan.
We make sure to sign up for health insurance coverage through Dale's employer about five days before it's due so that we're sure we'll have coverage starting on July 1st and can schedule a CT scan.
* July 1-13, no news from Dale's employer or health insurance. After several calls to both places, we're told that Anthem Blue Cross Blue Shield (BC/BS) accepts new enrollment information only during the third week of each month, so we'll have to wait until the week of July 15 until they start processing our information. Dr. Wendy's office makes several calls to BC/BS, but we're not in the system yet. And they won't give the pre-approval for the CT scan until we're in the system. Wait, wait, wait!
* Week of July 15. The insurance information should go through this week. After several calls, they FINALLY have ID numbers for us about Thursday, July 19. Now, we can start getting a CT scan authorized and scheduled.
It's been about three months since I first felt that lump that eventually went away and then came back!
* Friday, July 27, the CT is finally scheduled and performed at the Central Utah Clinic in American Fork. Now wait the weekend until the results are in.
* Tuesday, July 31, appointment with Dr. Wendy--the one where she asks if I've been pouring fertilizer into my lymph nodes. She actually had the results Friday afternoon but didn't want to ruin my weekend, so she just waited. What's the next step? What do we need to wait for now? For BC/BS to give pre-authorization for a PET scan.
Drat! Dale didn't come with me to this appointment. Suddenly, I'm wishing he had. So I cry to Jackie and Cindy. I actually lie or deliberately try to put off answering his question of how my appointment with Dr. Wendy went because I'm not going to tell my husband over the phone that I probably have cancer yet again!
* Thursday, August 2. It's been 2 full days since I saw Dr. Wendy and no PET authorization yet, so I call BC/BS to see what the expected wait time is for a PET authorization. Their answer? 5 extremely long days, unless Dr. Wendy originally made an urgent request, then the wait is only 2 days!
I can't do this anymore. The waiting is killing me. I hoped the CT scan would come back and show some sort of bone protrusion, not a swollen lymph node. Drat!
I call Dr. Wendy's office--forgetting that she and her staff are out on Thursdays. I am eventually transferred to a medical coordinator for a different oncologist in the office. After patiently listening to my partial melt-down from all of the waiting, she agrees to call the insurance and see what she can do.
* Sunday, August 5. I ask almost the whole ward and all family members to join with Dale and I in fasting for me. How many times can one person beat Hodgkins? I fear that I'm fast approaching that limit.
* Monday, August 6. It's been almost an entire week since I saw Dr. Wendy and a PET is still not authorized or scheduled as far as I know. After calling Dr. Wendy's office again, I'm finally told that we have the authorization. Now we're waiting for the Huntsman Cancer Hospital to schedule the PET. They're notoriously slower with scheduling because they don't trust the initial authorization that the insurance gives the doctor's offices, so they have to call the insurance company themselves to verify the information personally. Tearfully, I ask if we can make sure that we get an appointment--any appointment, for any time of day--SOMETIME before this week is out.
AAARRRRGGGHHH! The What If game is really wreaking havoc on me now, and it's difficult to sleep.
* Tuesday, August 7. The PET is scheduled for 7 a.m. Friday morning. At last!
* Friday, August 10. PET scan is done, but no hints if any areas lit up. More waiting. I try to work, but end up leaving two hours later. Huntsman said that Dr. Wendy would have the results today, so I'm going to try and get those results before the weekend comes and I have to endure more waiting.
Drat! No such luck. I feel like I'm having a partial nervous breakdown in Dr. Wendy's office while crying to Kathy that the waiting gets harder and harder with each occurrence. Somehow, you would think I'd get more seasoned and patient with the process, but I find the opposite is true. I have a good idea of what's coming, and I just want to get to the known facts. Stop the waiting game, please!
It isn't a fun weekend. In fact, I cried into Dale's arms one night. Please, stop the torture and just tell me what we're dealing with this time and what we're going to do about it. Please!
* Monday, August 13. I'm at work. April's on the phone, telling me that Dr. Wendy wants to talk to me. FINALLY! Except the news isn't what I'm hoping for. She rattles off so many areas that show active disease (lit up or have cancer) that I can't record them all. She's going to talk with Dr. Asch at LDS Hospital about any other ideas their team might have for me and call me Wednesday. Her plan is to start chemo either Friday or Monday. More waiting.
* Wednesday, August 15. Dr. Wendy's office calls to say that Dr. Asch presented my case at the Tumor Review Board meeting this morning, and I should expect to hear from someone at LDS sometime later today.
Except there's a problem. I have training scheduled from 1-3:30, and I'm the designated note taker for a very complicated process. At least three other people are relying on my notes. Then, I have a meeting from 3:30-4:30 that I'm responsible for leading. I've already postponed that meeting once from Monday (because it was supposed to happen right after I heard Dr. Wendy's long list of areas that lit up), so I'm not postponing it again.
My schedule gives me about thirty minutes to talk to someone right now, so I call the bone marrow transplant team. Rachel (the coordinator who's guided me through all the phases of collecting the stem cells and the transplant and talked with me so much that I feel our relationship is more like personal friends than professionals) is talking to me, explaining that Dr. Asch wants to meet with me to discuss the possibilities of an allogeneic (cells from a matching donor) transplant. However, she can't meet with me until Monday (August 20) afternoon, so there's going to be no chemo or treatment until after I see her. It's my choice whether I meet with her or not. I don't want another transplant at this point in time, but I do trust her opinion and gathering more information can't hurt, so I reluctantly agree to wait longer so that Dale and I can talk with her on Monday.
Wait, wait, wait.
I don't want to wait, and I really don't want to hear about the possibilities of another, more intense and more difficult transplant, but I wait--yet again.
It's now been four months since I first felt that initial lump. Oh, help! Do you think I can start treatment sometime during this next week. Please?!!
Tuesday, August 14, 2012
Adcetris (brentuximab vedotin) Chemo
When I have a few minutes of time at work, I look up information on Adcetris (brentuximab vedotin) on the Web. It's not even listed in my usual go to site for information: chemocare.com. Now what? I find the main site (adcetris.com) and start reading.
The most amazing thing? It was approved by the FDA for the treatment of Hodgkins on August 19, 2011. And before that announcement, 30 years passed without any advancements in Hodgkins treatments. So the very day I checked into LDS Hospital for a bone marrow transplant last year is the very day that the FDA gave approval for Adcetris to be used in treating relapsed (cancer that came back after a short time) Hodgkins.
Thank you, Heavenly Father, for never leaving me without any hope! Thank you for letting that advancement be discovered just before I'd need it!
Adcetris is different from all of the others that I've had so far (and that's saying a lot!) because it's the first that works with the immune system to fight the cancer. And it really combines two different drugs. Researchers discovered that Hodgkins cells have a certain marker named CD30, so the first drug (brentuximab) is an antibody that attaches itself to CD30. The Hodgkins cells then absorb the Adcetris. Then, the second part of the drug, MMAE, kicks in. It's what kills cells.
Incredible!
Of course, it's not without side effects. The ones most commonly reported are peripheral neuropathy (tingling or loss of sensation in your fingers and toes), but I've already got that from Vinblastine about four years ago. Neutropenia (low numbers of white blood cells), nausea, and fatigue were the most reported side effects.
Of course, I don't agree with the maker's definition of success though. They count the treatment as successful if the tumors shrink by half or more. That's not good enough for me!
A blessing promised me that the treatment would exceed all expectations. Well, I expect the chemo to kill all of the cancer in my body and keep it away for at least another 3-4 years. Dr. Wendy's 5-year plan is out the door, but I figure that the blessing means that I have at least a 7-year plan now. Maybe I should raise my expectations to really high (live to 70?) and then let the promised blessing exceed those heightened expectations.
Do you think it would work? ;-)
The most amazing thing? It was approved by the FDA for the treatment of Hodgkins on August 19, 2011. And before that announcement, 30 years passed without any advancements in Hodgkins treatments. So the very day I checked into LDS Hospital for a bone marrow transplant last year is the very day that the FDA gave approval for Adcetris to be used in treating relapsed (cancer that came back after a short time) Hodgkins.
Thank you, Heavenly Father, for never leaving me without any hope! Thank you for letting that advancement be discovered just before I'd need it!
Adcetris is different from all of the others that I've had so far (and that's saying a lot!) because it's the first that works with the immune system to fight the cancer. And it really combines two different drugs. Researchers discovered that Hodgkins cells have a certain marker named CD30, so the first drug (brentuximab) is an antibody that attaches itself to CD30. The Hodgkins cells then absorb the Adcetris. Then, the second part of the drug, MMAE, kicks in. It's what kills cells.
Incredible!
Of course, it's not without side effects. The ones most commonly reported are peripheral neuropathy (tingling or loss of sensation in your fingers and toes), but I've already got that from Vinblastine about four years ago. Neutropenia (low numbers of white blood cells), nausea, and fatigue were the most reported side effects.
Of course, I don't agree with the maker's definition of success though. They count the treatment as successful if the tumors shrink by half or more. That's not good enough for me!
A blessing promised me that the treatment would exceed all expectations. Well, I expect the chemo to kill all of the cancer in my body and keep it away for at least another 3-4 years. Dr. Wendy's 5-year plan is out the door, but I figure that the blessing means that I have at least a 7-year plan now. Maybe I should raise my expectations to really high (live to 70?) and then let the promised blessing exceed those heightened expectations.
Do you think it would work? ;-)
Drat and Drat, and Drat Again!
It's Monday, August 13th. What a fitting date! Too bad that it's not a Friday. That would just make this day complete.
So I was asked on Sunday what I expected the scan to show. I don't know how to answer that. I've given up all semblance of my own expectations by this point. I never expected Hodgkins to come back--especially after 33 years, then I never expected it to come back again, or come back after the bone marrow transplant. Drat!
What I hope for is that it's in only one location and that we can treat it simply with radiation and give my body a break from chemo. That's what I'm wishing and hoping for, so that's the answer I give.
Silly me! I should have known better.
I'm at work, typing madly away, when I get a call on my cell phone; and I recognize the number immediately. After an entire weekend of wondering and contemplating the "What ifs. . ." (Don't you just hate that game? What if they didn't see the cancer on the scan, but I have it? What if it shows that cancer has spread all over? What if we can't do radiation? What if it's not Hodgkins this time? What if. . . and on and on. I HATE it!)
Finally, the waiting is over; and I'm told that Dr. Wendy wants to talk to me. I hastily grab a post-it note and a pen and make my way to the nearest conference room.
Just as I've sat down, Dr. Wendy's voice is in my ear. "So I have the results from the PET scan. The scan showed active disease [cancer] in. . ." She starts listing off various locations so fast that I can't record them all. I'm able to record the start of the names of about 4 lymph node chains on the right side, another on the left, one lymph node by my left kidney, and one behind my belly button.
What a minute! My mind is reeling as fast as she's naming lymph chains. This is too many places and way more than I expected. The cancer is in at least three main places and on both sides of my body (right and left). That means radiation is no longer an option. Suddenly, that initial five-year treatment plan is out the door. Drat!
We need to start chemo AGAIN? Do we need to schedule a needle biopsy and a bone marrow biopsy to make sure we know what we're dealing with? No, she's pretty sure. "Although, if you want me to stick a needle in you, Trish. I'll do that."
"So what happens after we kill these occurrences of Hogkins and it comes back in about 3-4 years?" I hesitantly ask. "Trish, you're a smart person. I'm not going to lie to you. We're going to hope that they discover a cure by then." That's not much reassurance. Drat!
I'm in tears while my mind is starting to process everything. Great, and I'm supposed to lead a meeting in about 20 minutes. I start crafting the following text message to family members:
"Results of scan: It's in 3 areas. Left side, right side, and near belly button. Way more spread than anticipated. Radiation won't work. Got to use the new chemo drug that was approved in the past year for Hodgkins, which mean no 5-year plan options :-( Good news? It's not both above and below my diaphragm so good chance of chasing it out this time. And a Priesthood blessing promised the treatment would exceed all expectations. Maybe I have a 7-year plan after all."
The transplant team at LDS Hospital wants to present my case in their weekly Tumor Review Meeting on Wednesday. They don't think any more transplants will ever be the right treatment option for me, but they're going to ask if anyone has any other treatment ideas or hope to offer.
And the new drug is known to cause pulmonary toxicities, so a consult with Dr. Mike is necessary. It's not a matter of what we're going to do. We have no other options at this point. We have to use the new chemo drug if we want any hope of success, but it is a matter of balancing the doseage with the possible side affects: enough chemo to kill the cancer cells but not enough to kill me.
So our plan is:
Dr. Wendy will talk to Dr. Mike about the proper doseage for me. Then, after the Tumor Review Board meets on Wednesday, she'll talk to Dr. Asch to see if anyone had any other ideas, and then she'll call me. We'll either meet in person on Friday or next Monday to start chemo.
Drat and drat, and drat again!
So I was asked on Sunday what I expected the scan to show. I don't know how to answer that. I've given up all semblance of my own expectations by this point. I never expected Hodgkins to come back--especially after 33 years, then I never expected it to come back again, or come back after the bone marrow transplant. Drat!
What I hope for is that it's in only one location and that we can treat it simply with radiation and give my body a break from chemo. That's what I'm wishing and hoping for, so that's the answer I give.
Silly me! I should have known better.
I'm at work, typing madly away, when I get a call on my cell phone; and I recognize the number immediately. After an entire weekend of wondering and contemplating the "What ifs. . ." (Don't you just hate that game? What if they didn't see the cancer on the scan, but I have it? What if it shows that cancer has spread all over? What if we can't do radiation? What if it's not Hodgkins this time? What if. . . and on and on. I HATE it!)
Finally, the waiting is over; and I'm told that Dr. Wendy wants to talk to me. I hastily grab a post-it note and a pen and make my way to the nearest conference room.
Just as I've sat down, Dr. Wendy's voice is in my ear. "So I have the results from the PET scan. The scan showed active disease [cancer] in. . ." She starts listing off various locations so fast that I can't record them all. I'm able to record the start of the names of about 4 lymph node chains on the right side, another on the left, one lymph node by my left kidney, and one behind my belly button.
What a minute! My mind is reeling as fast as she's naming lymph chains. This is too many places and way more than I expected. The cancer is in at least three main places and on both sides of my body (right and left). That means radiation is no longer an option. Suddenly, that initial five-year treatment plan is out the door. Drat!
We need to start chemo AGAIN? Do we need to schedule a needle biopsy and a bone marrow biopsy to make sure we know what we're dealing with? No, she's pretty sure. "Although, if you want me to stick a needle in you, Trish. I'll do that."
"So what happens after we kill these occurrences of Hogkins and it comes back in about 3-4 years?" I hesitantly ask. "Trish, you're a smart person. I'm not going to lie to you. We're going to hope that they discover a cure by then." That's not much reassurance. Drat!
I'm in tears while my mind is starting to process everything. Great, and I'm supposed to lead a meeting in about 20 minutes. I start crafting the following text message to family members:
"Results of scan: It's in 3 areas. Left side, right side, and near belly button. Way more spread than anticipated. Radiation won't work. Got to use the new chemo drug that was approved in the past year for Hodgkins, which mean no 5-year plan options :-( Good news? It's not both above and below my diaphragm so good chance of chasing it out this time. And a Priesthood blessing promised the treatment would exceed all expectations. Maybe I have a 7-year plan after all."
The transplant team at LDS Hospital wants to present my case in their weekly Tumor Review Meeting on Wednesday. They don't think any more transplants will ever be the right treatment option for me, but they're going to ask if anyone has any other treatment ideas or hope to offer.
And the new drug is known to cause pulmonary toxicities, so a consult with Dr. Mike is necessary. It's not a matter of what we're going to do. We have no other options at this point. We have to use the new chemo drug if we want any hope of success, but it is a matter of balancing the doseage with the possible side affects: enough chemo to kill the cancer cells but not enough to kill me.
So our plan is:
Dr. Wendy will talk to Dr. Mike about the proper doseage for me. Then, after the Tumor Review Board meets on Wednesday, she'll talk to Dr. Asch to see if anyone had any other ideas, and then she'll call me. We'll either meet in person on Friday or next Monday to start chemo.
Drat and drat, and drat again!
Friday, August 10th
Had the PET scan today at the Huntsman Cancer Hospital. (I didn't know such an entity even existed.)
It's a beautiful building tucked into the northeast corner of the Salt Lake City mountains--up above the U of U Hospital and Primary Children's Medical Center. I had to turn around only four times while getting there though because all of the signs are confusing.
This was either the 9th or 10th PET scan I've had in the past four years. I think I need some new hobbies!
Nothing too much to note, except I like PET scans there instead of at American Fork Hospital. AF has a traveling semi trailer that houses their PET scans and the trailer is always too hot or too cold, depending on the season. And Huntsman doesn't do oral or IV contrast for suspected lymphoma, while AF does both. I can deal with less contrast in my life.
Only downside is that AF knows me so well that they'll show me the pictures so I have a good idea of what areas lit up (show active cancer) during the scan. No such luck with Huntsman. Just a "Your doctor will have the results by this evening and you'll hear from them probably within 48 hours."
Now the waiting begins. Oh, how I hate the waiting. I wonder how much time total I've spent in my life waiting for the results from various tests to see 1) if I have cancer, 2) where it's at THIS time, and 3) what treatement we're going to try next.
I left work a little early and visited Dr. Wendy's office, just to see if I could get answers today instead of Monday. I think I gave Dr. Wendy the wrong impression during my last visit. She told me the results of the CT were back on Friday and she almost called me, but she thought I deserved to have a good weekend without knowing that the scan showed a lump at the top of my right leg. (Like I didn't know that and hadn't felt it myself for about the last six weeks.)
Alas, Huntsman won't have the results finalized until Monday. So the waiting continues all through the weekend. Drat!
It's a beautiful building tucked into the northeast corner of the Salt Lake City mountains--up above the U of U Hospital and Primary Children's Medical Center. I had to turn around only four times while getting there though because all of the signs are confusing.
This was either the 9th or 10th PET scan I've had in the past four years. I think I need some new hobbies!
Nothing too much to note, except I like PET scans there instead of at American Fork Hospital. AF has a traveling semi trailer that houses their PET scans and the trailer is always too hot or too cold, depending on the season. And Huntsman doesn't do oral or IV contrast for suspected lymphoma, while AF does both. I can deal with less contrast in my life.
Only downside is that AF knows me so well that they'll show me the pictures so I have a good idea of what areas lit up (show active cancer) during the scan. No such luck with Huntsman. Just a "Your doctor will have the results by this evening and you'll hear from them probably within 48 hours."
Now the waiting begins. Oh, how I hate the waiting. I wonder how much time total I've spent in my life waiting for the results from various tests to see 1) if I have cancer, 2) where it's at THIS time, and 3) what treatement we're going to try next.
I left work a little early and visited Dr. Wendy's office, just to see if I could get answers today instead of Monday. I think I gave Dr. Wendy the wrong impression during my last visit. She told me the results of the CT were back on Friday and she almost called me, but she thought I deserved to have a good weekend without knowing that the scan showed a lump at the top of my right leg. (Like I didn't know that and hadn't felt it myself for about the last six weeks.)
Alas, Huntsman won't have the results finalized until Monday. So the waiting continues all through the weekend. Drat!
Tuesday, August 7, 2012
Here We Go (Again!)
So the insurance company gave authorization for the PET scan, and it's now scheduled at 7:30 a.m. on Friday morning at the Huntsman Cancer Hospital in Salt Lake City.
Here we go again!
And I had a Priesthood blessing on Sunday that promised that the treatments this time "would exceed all expectations." Cool, my five-year plan just expanded into at least a seven-year plan :-)
Here we go again!
And I had a Priesthood blessing on Sunday that promised that the treatments this time "would exceed all expectations." Cool, my five-year plan just expanded into at least a seven-year plan :-)
Wednesday, August 1, 2012
I Figured It Out
I now know the problem of the recurring Hodgkins nightmare. And I have the solution!
There simply is not enough purple, specifically violet, in my life.
Naturally I asked Dale if we could paint our house purple. Why not surround myself with the color? It would be a type of an exterior shield against my body's internal, continuing struggle.
With just a moment's hesitation, my beloved husband suggested that we paint the front door instead :-)
There simply is not enough purple, specifically violet, in my life.
Naturally I asked Dale if we could paint our house purple. Why not surround myself with the color? It would be a type of an exterior shield against my body's internal, continuing struggle.
With just a moment's hesitation, my beloved husband suggested that we paint the front door instead :-)
Ward Email Message
Cindy sent the following email to all of the women in our ward, inviting them to join in the fast:
From: Cindy Davis
Date: Tue, Jul 31, 2012 at 7:53 PM
Subject: Trisha Howard
To: Nicole Crawley
Cc: Barry Cloward
Dear Sisters,
Trisha Howard came to my home today and asked for us to remember her in our prayers and in our fast this Sunday. She was told today that her cancer is likely back. They will be doing some tests next week to verify. She said, however, that she believes that faith can move mountains. I agree. I personally, am going to ask that this cup be removed from her, but ultimately that she will have strength as she navigates through whatever is the Lord's will. She said that is what she is going to ask for as well.
I love you sisters. I love Trish. We need to pray for each other more. As we do, I testify...even through email...that we will find an added measure of peace and strength in our own lives and trials.
Cindy
From: Cindy Davis
Date: Tue, Jul 31, 2012 at 7:53 PM
Subject: Trisha Howard
To: Nicole Crawley
Cc: Barry Cloward
Dear Sisters,
Trisha Howard came to my home today and asked for us to remember her in our prayers and in our fast this Sunday. She was told today that her cancer is likely back. They will be doing some tests next week to verify. She said, however, that she believes that faith can move mountains. I agree. I personally, am going to ask that this cup be removed from her, but ultimately that she will have strength as she navigates through whatever is the Lord's will. She said that is what she is going to ask for as well.
I love you sisters. I love Trish. We need to pray for each other more. As we do, I testify...even through email...that we will find an added measure of peace and strength in our own lives and trials.
Cindy
Tuesday, July 31, 2012
Uh Oh!
So what's bigger than a war? All the words that come to my mind aren't grand enough.
The first time I had cancer as a 7 year-old, there weren't colors associated with each type of cancer, so I fought a fight and won!
By the time I was 40 and had Hodgkins lymphoma the second time, violet was assigned as its official cancer color. So I fought a purple battle and won!
About 22 months later, when Hodgkins was back for a third go around, my fight seemed bigger than just a fight or a battle, so it became a purple war, and I won!
Today, about 11 months after the bone marrow transplant for that previous war, I was told by Dr. Wendy, my oncologist, that if she was a betting woman, Hodgkins is back for yet another round.
So what's bigger than a war? An assault? A strike force? An epoch? Nothing seems big enough.
We don't have any test results yet, just a few enlarged lymph nodes that showed up on a routine CAT (or CT) scan. I know they're there. I've felt them for the last six weeks or so--even pointed them out to my primary physician and to Dr. Wendy. Both times I was told that either they couldn't feel anything or it didn't feel like lymph nodes, so I was told just to watch the area. I knew the CT was coming, so I waited. And I made sure to tell the tech on Friday to draw the radiologist's attention to the area.
It's a definite danger sign when the first words out of your oncologist's mouth on a routine follow-up visit are, "Have you been pouring fertilizer into your lymph nodes? This doesn't look good."
So, now we wait for the insurance company (new to us as of July 1st) to give approval for a PET scan (a more glorified CT scan with an accompanying injection of radioactive sugar because cancer loves sugar and will digest that radioactive sugar faster than normal tissue), and then wait for the U of U to squeeze me into their schedule.
Assuming the lymph nodes in the right inguinal area (It switched sides this time. Tricky stuff, that cancer!) light up the CT screen like Dr. Wendy thinks they will but only that one area lights up, then we'll do a needle biopsy ("Just to make sure that it's still Hodgkins lymphoma and hasn't morphed into another type of lymphoma by now.").
Assuming the needle biopsy shows Hodgkins lymphoma for a freaky fourth time, we can treat the cancer with radiation only.
Dr. Wendy says, "And knowing your body, that will give us about a year before it comes back again. At that point, we'll use the new chemo drug that's just been approved for Hodgkins. Knowing your body, that will give us another 3-4 years before it comes back again (for the sixth time for anyone that's still counting occurrences). When we get to that point, we'll re-evaluate. We just have to be careful to consider all that your body has already been through and all that it will probably still go through. The temptation is to just treat the here and now occurrence, but we can't afford to do that with you. We need to have at least a five-year plan and be looking at what your body can still tolerate."
Lovely! What can I say to that?
I did ask her at what point do you just give up and quit fighting. And very passionately, with a pointed finger bobbing in my direction with every syllable, she said, "We are not at that point yet." I didn't mean today. I meant somewhere after that five-year battle plan she laid out. Just curious.
Oh, and maybe the definitive point today in all of this is when my beloved husband tells me that he had an impression about two weeks ago that the Hodgkins was back. He didn't tell me about it and didn't do anything with it because he "just wasn't ready to deal with it again."
So, here is me being selfish.
Please pray and fast for me and with me this Sunday, August 5th. I know we can have faith enough to move mountains, so surely we can have faith enough to cure cancer in tiny little lymph nodes. And if that's not Heavenly Father's will at this time, then pray and fast that I and my family will have enough strength and peace to deal with everything that happens, that the tests can be scheduled and the results can come quickly, and that the doctors who are involved will be guided as to the correct course of action.
Please, please, please; and thanks, thanks, thanks!
The first time I had cancer as a 7 year-old, there weren't colors associated with each type of cancer, so I fought a fight and won!
By the time I was 40 and had Hodgkins lymphoma the second time, violet was assigned as its official cancer color. So I fought a purple battle and won!
About 22 months later, when Hodgkins was back for a third go around, my fight seemed bigger than just a fight or a battle, so it became a purple war, and I won!
Today, about 11 months after the bone marrow transplant for that previous war, I was told by Dr. Wendy, my oncologist, that if she was a betting woman, Hodgkins is back for yet another round.
So what's bigger than a war? An assault? A strike force? An epoch? Nothing seems big enough.
We don't have any test results yet, just a few enlarged lymph nodes that showed up on a routine CAT (or CT) scan. I know they're there. I've felt them for the last six weeks or so--even pointed them out to my primary physician and to Dr. Wendy. Both times I was told that either they couldn't feel anything or it didn't feel like lymph nodes, so I was told just to watch the area. I knew the CT was coming, so I waited. And I made sure to tell the tech on Friday to draw the radiologist's attention to the area.
It's a definite danger sign when the first words out of your oncologist's mouth on a routine follow-up visit are, "Have you been pouring fertilizer into your lymph nodes? This doesn't look good."
So, now we wait for the insurance company (new to us as of July 1st) to give approval for a PET scan (a more glorified CT scan with an accompanying injection of radioactive sugar because cancer loves sugar and will digest that radioactive sugar faster than normal tissue), and then wait for the U of U to squeeze me into their schedule.
Assuming the lymph nodes in the right inguinal area (It switched sides this time. Tricky stuff, that cancer!) light up the CT screen like Dr. Wendy thinks they will but only that one area lights up, then we'll do a needle biopsy ("Just to make sure that it's still Hodgkins lymphoma and hasn't morphed into another type of lymphoma by now.").
Assuming the needle biopsy shows Hodgkins lymphoma for a freaky fourth time, we can treat the cancer with radiation only.
Dr. Wendy says, "And knowing your body, that will give us about a year before it comes back again. At that point, we'll use the new chemo drug that's just been approved for Hodgkins. Knowing your body, that will give us another 3-4 years before it comes back again (for the sixth time for anyone that's still counting occurrences). When we get to that point, we'll re-evaluate. We just have to be careful to consider all that your body has already been through and all that it will probably still go through. The temptation is to just treat the here and now occurrence, but we can't afford to do that with you. We need to have at least a five-year plan and be looking at what your body can still tolerate."
Lovely! What can I say to that?
I did ask her at what point do you just give up and quit fighting. And very passionately, with a pointed finger bobbing in my direction with every syllable, she said, "We are not at that point yet." I didn't mean today. I meant somewhere after that five-year battle plan she laid out. Just curious.
Oh, and maybe the definitive point today in all of this is when my beloved husband tells me that he had an impression about two weeks ago that the Hodgkins was back. He didn't tell me about it and didn't do anything with it because he "just wasn't ready to deal with it again."
So, here is me being selfish.
Please pray and fast for me and with me this Sunday, August 5th. I know we can have faith enough to move mountains, so surely we can have faith enough to cure cancer in tiny little lymph nodes. And if that's not Heavenly Father's will at this time, then pray and fast that I and my family will have enough strength and peace to deal with everything that happens, that the tests can be scheduled and the results can come quickly, and that the doctors who are involved will be guided as to the correct course of action.
Please, please, please; and thanks, thanks, thanks!
Sunday, June 24, 2012
Being afraid of "Too hard"
Are you ever afraid? Do you ever fear what's coming next?
Just recently, I realized how afraid I am that Heavenly Father is going to ask me to do something hard, something really really hard, something that tests everything I am and know.
I don't want to pray for more patience, or more faith, or more spiritual strength, or any other gifts of the Spirit that are so valuable, or any help fixing any of my weaknesses--because I'm afraid that to gain those gifts and that strength that I'll have to go through something really hard.
Silly Trish! Like beating cancer three times isn't a hard thing!
Then I realized something even more important--something I know in my head, but a truth FINALLY transcribed itself into my heart in a slightly new and different way, a way that I need to understand at this time in my life.
If this sounds familiar, say it with me. . .
"And it came to pass that I Nephi said unto my father. I will go and do the things which the Lord has commanded, for I know that the Lord giveth no commandment unto the children of men, save He shall prepare a way for them that they may accomplish the thing which He commandeth them."
Is Heavenly Father EVER going to give us something that is TOO hard? Is He going to prepare the way, prepare us, and carry us through life?
In the very first chapter of the Doctrine & Covenants, He tells us that He knows the calamities that are coming and prepared the way so that we could be warned (verses 17, and 37-38).
Is there anything we're going to face in life that's too hard, that we haven't been warned about and prepared for?
No! and No! I can finally let that fear go, although I probably still won't pray for more patience :-)
Just recently, I realized how afraid I am that Heavenly Father is going to ask me to do something hard, something really really hard, something that tests everything I am and know.
I don't want to pray for more patience, or more faith, or more spiritual strength, or any other gifts of the Spirit that are so valuable, or any help fixing any of my weaknesses--because I'm afraid that to gain those gifts and that strength that I'll have to go through something really hard.
Silly Trish! Like beating cancer three times isn't a hard thing!
Then I realized something even more important--something I know in my head, but a truth FINALLY transcribed itself into my heart in a slightly new and different way, a way that I need to understand at this time in my life.
If this sounds familiar, say it with me. . .
"And it came to pass that I Nephi said unto my father. I will go and do the things which the Lord has commanded, for I know that the Lord giveth no commandment unto the children of men, save He shall prepare a way for them that they may accomplish the thing which He commandeth them."
Is Heavenly Father EVER going to give us something that is TOO hard? Is He going to prepare the way, prepare us, and carry us through life?
In the very first chapter of the Doctrine & Covenants, He tells us that He knows the calamities that are coming and prepared the way so that we could be warned (verses 17, and 37-38).
Is there anything we're going to face in life that's too hard, that we haven't been warned about and prepared for?
No! and No! I can finally let that fear go, although I probably still won't pray for more patience :-)
Thursday, April 19, 2012
March 22, 2012
It's Thursday, March 22. I've been tugging, pulling, and carrying supplemental oxygen tanks around EVERYWHERE for the past 7 months. It even has to accompany me to job interviews, and I know I've lost one possible opportunity because writing that company's manuals requires me to visit various job sites and record what happens. I just can't wheel or lug oxygen easily over rough terrain for a half mile or more, and we both realize it. Darn it!
However, I realize today that I feel stronger and can breathe a little easier. I think it's time for an experiment, so I remove the nasal cannula and go about my daily business.
I keep checking my O2 saturation levels every 30 minutes or so with a portable oximeter, and each time the numbers are over 90. Hallelujah! It might FINALLY be time to say adios to that meddlesome cannula.
Since my numbers continue to stay strong throughout the day, I'm hopeful that I'm through with the supplemental oxygen crud.
I keep using the oxygen at night because it's often harder to breathe while sleeping than while active, but everything still looks good; and I'm feeling stronger. Hooray!
Finally, after starting supplemental oxygen around the end of August 2011, the medical supply company comes and picks it all up--only about 8 months later! I'm just so thrilled to be rid of it.
The chemo I had as part of the bone marrow transplant is known to cause lung toxicities in some people. Because my lungs are already damaged and weak, I figured that those lung toxicities would, for sure!, affect my lungs and probably keep me on oxygen the rest of my life.
It's not so. Good-bye supplemental oxygen. I won't miss you. Hello, another tender mercy from the Lord!
However, I realize today that I feel stronger and can breathe a little easier. I think it's time for an experiment, so I remove the nasal cannula and go about my daily business.
I keep checking my O2 saturation levels every 30 minutes or so with a portable oximeter, and each time the numbers are over 90. Hallelujah! It might FINALLY be time to say adios to that meddlesome cannula.
Since my numbers continue to stay strong throughout the day, I'm hopeful that I'm through with the supplemental oxygen crud.
I keep using the oxygen at night because it's often harder to breathe while sleeping than while active, but everything still looks good; and I'm feeling stronger. Hooray!
Finally, after starting supplemental oxygen around the end of August 2011, the medical supply company comes and picks it all up--only about 8 months later! I'm just so thrilled to be rid of it.
The chemo I had as part of the bone marrow transplant is known to cause lung toxicities in some people. Because my lungs are already damaged and weak, I figured that those lung toxicities would, for sure!, affect my lungs and probably keep me on oxygen the rest of my life.
It's not so. Good-bye supplemental oxygen. I won't miss you. Hello, another tender mercy from the Lord!
beginning of February 2012
So I feel disheartened, probably almost to the point of being clinically depressed. It seems like there are too many effects from fighting cancer and being alive. Why am I still here after 3 rounds of cancer when some people get cancer once and they're gone just a short time later? I'm trapped in a small pity party and am grasping for the light again.
It's Fast Sunday. As I'm pondering what hymns to play as prelude, I'm moved to play through several Sacrament Hymns. Why not? What could be more appropriate as a base for our testimonies than to remember the sacrifice of our Savior and His Atonement!
As I play, I'm silently singing the words to myself, and thinking about the Atonement in general.
It was our Stake's focus for all of 2011, so there's been lots of information on the subject presented in various meetings for the past twelve months. That's what I'm contemplating as I'm playing the prelude.
I know the Atonement can heal us spiritually. I know what a relief and joy it is to feel clean again after repenting and feeling the Savior's forgiveness. All of the former despair is washed away and the world seems brighter, the colors seem clearer. What a blessing!
I also know that the Atonement can heal us emotionally. Mental and emotional ugly black slashes, either deliberately or accidentally burned through our psyches, can be smoothed over; and we can feel and find worth and joy and love. I've found peace in that part of the Atonement as well.
So why does life seem so hard right now? The Atonement can cure any and every part of our life.
Suddenly, the burden of the past few weeks is lifted, and there is life again. I guess I'm a little slower than most people because it's taken a year of discussion for all aspects of the Atonement to sink in.
Silly Trish! You've forgotten about the most apparent and obvious part of the Atonement--the promise of being resurrected. Sure, my body is ravaged by the effects of various cancer treatments. Sure, it's harder to breathe and move and work than it is for most people. But, and this is the part you lost sight of momentarily, IT WON'T BE LIKE THIS FOREVER!
I will be resurrected. Because of the Atonement, I will have a perfect body with a working heart and lungs and be able to run and do everything I want to without physical restrictions. I'll get to bear and raise children. Even that blessing is not denied because of our Savior's wonderful sacrifice.
The sense of hope that I've been missing for the last few weeks is back. I just needed to remember our Savior and ALL that He's done for us. I know I need to share this joy and the Spirit is really prompting me to get up in Sacrament Meeting, but I'm too emotional. This re-discovery is too new and raw, and I don't trust myself to be able to convey all of this in a way that will make sense to anyone else. No, I tell myself, it's better to listen to others' discoveries and truths now.
I spend all of Sunday School marveling at how good life is, how simple and yet profound the gospel is, and how much hope I feel now compared to how I felt at the beginning of the day.
Then, as Relief Society is almost at an end, I'm on my feet, stammering "Darn it. I'm supposed to get up now" as I feel like the Spirit is pushing me to a standing position.
It's okay. I can share these thoughts now, hopefully, in a way that will inspire someone else and make their burdens lighter.
How Great Thou Art!
It's Fast Sunday. As I'm pondering what hymns to play as prelude, I'm moved to play through several Sacrament Hymns. Why not? What could be more appropriate as a base for our testimonies than to remember the sacrifice of our Savior and His Atonement!
As I play, I'm silently singing the words to myself, and thinking about the Atonement in general.
It was our Stake's focus for all of 2011, so there's been lots of information on the subject presented in various meetings for the past twelve months. That's what I'm contemplating as I'm playing the prelude.
I know the Atonement can heal us spiritually. I know what a relief and joy it is to feel clean again after repenting and feeling the Savior's forgiveness. All of the former despair is washed away and the world seems brighter, the colors seem clearer. What a blessing!
I also know that the Atonement can heal us emotionally. Mental and emotional ugly black slashes, either deliberately or accidentally burned through our psyches, can be smoothed over; and we can feel and find worth and joy and love. I've found peace in that part of the Atonement as well.
So why does life seem so hard right now? The Atonement can cure any and every part of our life.
Suddenly, the burden of the past few weeks is lifted, and there is life again. I guess I'm a little slower than most people because it's taken a year of discussion for all aspects of the Atonement to sink in.
Silly Trish! You've forgotten about the most apparent and obvious part of the Atonement--the promise of being resurrected. Sure, my body is ravaged by the effects of various cancer treatments. Sure, it's harder to breathe and move and work than it is for most people. But, and this is the part you lost sight of momentarily, IT WON'T BE LIKE THIS FOREVER!
I will be resurrected. Because of the Atonement, I will have a perfect body with a working heart and lungs and be able to run and do everything I want to without physical restrictions. I'll get to bear and raise children. Even that blessing is not denied because of our Savior's wonderful sacrifice.
The sense of hope that I've been missing for the last few weeks is back. I just needed to remember our Savior and ALL that He's done for us. I know I need to share this joy and the Spirit is really prompting me to get up in Sacrament Meeting, but I'm too emotional. This re-discovery is too new and raw, and I don't trust myself to be able to convey all of this in a way that will make sense to anyone else. No, I tell myself, it's better to listen to others' discoveries and truths now.
I spend all of Sunday School marveling at how good life is, how simple and yet profound the gospel is, and how much hope I feel now compared to how I felt at the beginning of the day.
Then, as Relief Society is almost at an end, I'm on my feet, stammering "Darn it. I'm supposed to get up now" as I feel like the Spirit is pushing me to a standing position.
It's okay. I can share these thoughts now, hopefully, in a way that will inspire someone else and make their burdens lighter.
How Great Thou Art!
end of January 2012
Okay, so all of this nitrogen mustard stuff has been ruminating in the back of my mind for a few weeks now.
Do you want to see the list of things that were caused by chemotherapy and radiation from when I was 7 and 8, specifically the nitrogen mustard?
Here goes. . .in no particular order:
* Shingles (Extensive case, leaving massive scars and no skin sensation across my left shoulder and neck. Because the virus was activated, I currently have to take Acyclovir day and night so I don't contract another case while my body is recovering from the transplant.)
* Tachycardia (Resting heart rate is about 100 beats per minute, which means my heart races constantly and is working harder than it should.)
* Stunted growth (Parents were on the taller side, one brother was over 6 feet, my sisters are in the 5'6"-5'8" range, and I'm stuck at 5'0".)
* Weak teeth (I could pull out all of my teeth on my bottom left jaw today. They move significantly from side to side and have roots that are smaller than baby teeth. I was told at age 7 that I'd lose all of my teeth by the time I was 25. I'm trying to hold on to them as long as possible.)
* No sweat glands or hair follicles under either arm (This, I actually count as a blessing. No wearing deodorant or shaving there for me!)
* Hypothyroidism (Thyroid was damaged and doesn't produce enough hormone, so I'm on a replacement thyroid hormone.)
* Mitral Valve Regurgitation (Heart was damaged, so it's having to work harder to overcome the leaking valve.)
* Gastro-Esophageal Reflux (The esophageal lining was weakened and is too thin, so I take medication day and night to prevent more erosion.)
* Sterility (MOPP leaves you sterile, so I was told from the time I was 7 that I couldn't have children. Then, all of my female organs failed when I was 34, so I had to have a complete abdominal hysterectomy, which cinched the fact.)
* Pulmonary Hypertension (My lungs are permanently scarred and have the capacity of an 81 year-old woman. No wonder I have such trouble breathing!)
* Aortic Valve Stenosis (This heart valve leaks a lot and is being closely monitored. I'll probably have to have open heart surgery to have it replaced in the next 2-3 years.)
* Severe Osteoporosis (This is why, when I tripped on the sidewalk a year ago, my forearm and wrist shattered into over 20 pieces. Now, I'm on a daily injected medication for two years to try and strengthen my bones as much as possible. Chemo robs bones of their calcium.)
* Severe Myopia (Near sightedness. Recently added to my list as a direct effect.)
Not to mention all of the scars covering my body. Shingles scars, scars on my neck and upper chest from ports and other blood catheters, two long scars on my abdomen from a laparotomy and splenectomy (no spleen) at 7 and hysterectomy more recently, ugly scars on my left forearm and hand from having a external fixator inserted from when it was broken, and a pair of dog-bite-looking scars on the top of each foot from two lymphangiograms when I was 7 (for diagnosis and treatment progress purposes). I tongue-in-cheek joke with Dale that he'll never have a problem identifying my body with all of its scars!
I know. I know. I know it could be much worse. I'm alive and can relatively do the things I want to do--as long as I carry that wretched oxygen with me. However, this list and my general weakness and fatigue and the fact that I'm still on oxygen after 5 months have just been weighing heavily on me. It feels like too much. I feel like giving up sometimes. What's the point if I have all of this to deal with? And who knows how much worse the effects from the latest rounds of chemo and radiation are going to be? I'm just sad and disheartened.
Do you want to see the list of things that were caused by chemotherapy and radiation from when I was 7 and 8, specifically the nitrogen mustard?
Here goes. . .in no particular order:
* Shingles (Extensive case, leaving massive scars and no skin sensation across my left shoulder and neck. Because the virus was activated, I currently have to take Acyclovir day and night so I don't contract another case while my body is recovering from the transplant.)
* Tachycardia (Resting heart rate is about 100 beats per minute, which means my heart races constantly and is working harder than it should.)
* Stunted growth (Parents were on the taller side, one brother was over 6 feet, my sisters are in the 5'6"-5'8" range, and I'm stuck at 5'0".)
* Weak teeth (I could pull out all of my teeth on my bottom left jaw today. They move significantly from side to side and have roots that are smaller than baby teeth. I was told at age 7 that I'd lose all of my teeth by the time I was 25. I'm trying to hold on to them as long as possible.)
* No sweat glands or hair follicles under either arm (This, I actually count as a blessing. No wearing deodorant or shaving there for me!)
* Hypothyroidism (Thyroid was damaged and doesn't produce enough hormone, so I'm on a replacement thyroid hormone.)
* Mitral Valve Regurgitation (Heart was damaged, so it's having to work harder to overcome the leaking valve.)
* Gastro-Esophageal Reflux (The esophageal lining was weakened and is too thin, so I take medication day and night to prevent more erosion.)
* Sterility (MOPP leaves you sterile, so I was told from the time I was 7 that I couldn't have children. Then, all of my female organs failed when I was 34, so I had to have a complete abdominal hysterectomy, which cinched the fact.)
* Pulmonary Hypertension (My lungs are permanently scarred and have the capacity of an 81 year-old woman. No wonder I have such trouble breathing!)
* Aortic Valve Stenosis (This heart valve leaks a lot and is being closely monitored. I'll probably have to have open heart surgery to have it replaced in the next 2-3 years.)
* Severe Osteoporosis (This is why, when I tripped on the sidewalk a year ago, my forearm and wrist shattered into over 20 pieces. Now, I'm on a daily injected medication for two years to try and strengthen my bones as much as possible. Chemo robs bones of their calcium.)
* Severe Myopia (Near sightedness. Recently added to my list as a direct effect.)
Not to mention all of the scars covering my body. Shingles scars, scars on my neck and upper chest from ports and other blood catheters, two long scars on my abdomen from a laparotomy and splenectomy (no spleen) at 7 and hysterectomy more recently, ugly scars on my left forearm and hand from having a external fixator inserted from when it was broken, and a pair of dog-bite-looking scars on the top of each foot from two lymphangiograms when I was 7 (for diagnosis and treatment progress purposes). I tongue-in-cheek joke with Dale that he'll never have a problem identifying my body with all of its scars!
I know. I know. I know it could be much worse. I'm alive and can relatively do the things I want to do--as long as I carry that wretched oxygen with me. However, this list and my general weakness and fatigue and the fact that I'm still on oxygen after 5 months have just been weighing heavily on me. It feels like too much. I feel like giving up sometimes. What's the point if I have all of this to deal with? And who knows how much worse the effects from the latest rounds of chemo and radiation are going to be? I'm just sad and disheartened.
January 2012--a few weeks later
A few weeks after my eye appointment, I received an issue of the Cure magazine. It's designed for cancer survivors and their caregivers. Almost immediately, the message from the editor caught my eye, entitled "New research, discoveries in Hodgkin lymphoma."
Allow me to ramble for a moment. Things have sure changed in my 36 years of dealing with cancer! When I was 7, it was called Hodgkin's Lymphoma. It seemed to be called Hodgkins lymphoma about 4 years ago, and now it's called Hodgkin lymphoma. If I sneak that 's' onto Hodgkins, you'll know why.
Anyway, back to the article. I was astounded to read that Hodgkins was one of the first cancers to be treated successfully, and it's the principles learned from treating Hodgkins that all modern cancer treatments are based on.
Hodgkin's initial cures can be traced back to WWI. That's when troops were first exposed to nitrogen mustard gas and began developing symptoms of marrow and lymphatic suppression. So researchers wondered what effect nitrogen mustard would have on lymphatic cancers--such as Hodgkins. And it worked pretty well! By the mid-1960s, MOPP (mustargen [nitrogen mustard], Oncovin [vincristine], procarbazine, and prednisone) increased the success rate in treating Hodgkins from about 20% to 80%!
Along I come, in 1973, and MOPP and radiation are still the standard treatment for Hodgkins, so that's what I'm exposed to.
Suddenly, facts are becoming even clearer for me.
No wonder my body is so screwed up! No wonder I'm dealing with such an extensive list of ongoing, chronic issues. My body was pumped full of nitrogen mustard--that terrible nerve gas that was used in WWI.
That realization is just adding to my slight depression in trying to recover from the bone marrow transplant. I'm so tired. I wish I could just go to sleep and sleep long enough for it all to go away. It seems like too much to recover from.
In fact, if I'm being honest, sometimes it seems a lot harder to fight to keep living than it would be to give up. And, I've prayed more than once, if it be Heavenly Father's will, that I be released from this life and be allowed to come home again. Alas, and thankfully--at the same time--it's not His will yet.
Allow me to ramble for a moment. Things have sure changed in my 36 years of dealing with cancer! When I was 7, it was called Hodgkin's Lymphoma. It seemed to be called Hodgkins lymphoma about 4 years ago, and now it's called Hodgkin lymphoma. If I sneak that 's' onto Hodgkins, you'll know why.
Anyway, back to the article. I was astounded to read that Hodgkins was one of the first cancers to be treated successfully, and it's the principles learned from treating Hodgkins that all modern cancer treatments are based on.
Hodgkin's initial cures can be traced back to WWI. That's when troops were first exposed to nitrogen mustard gas and began developing symptoms of marrow and lymphatic suppression. So researchers wondered what effect nitrogen mustard would have on lymphatic cancers--such as Hodgkins. And it worked pretty well! By the mid-1960s, MOPP (mustargen [nitrogen mustard], Oncovin [vincristine], procarbazine, and prednisone) increased the success rate in treating Hodgkins from about 20% to 80%!
Along I come, in 1973, and MOPP and radiation are still the standard treatment for Hodgkins, so that's what I'm exposed to.
Suddenly, facts are becoming even clearer for me.
No wonder my body is so screwed up! No wonder I'm dealing with such an extensive list of ongoing, chronic issues. My body was pumped full of nitrogen mustard--that terrible nerve gas that was used in WWI.
That realization is just adding to my slight depression in trying to recover from the bone marrow transplant. I'm so tired. I wish I could just go to sleep and sleep long enough for it all to go away. It seems like too much to recover from.
In fact, if I'm being honest, sometimes it seems a lot harder to fight to keep living than it would be to give up. And, I've prayed more than once, if it be Heavenly Father's will, that I be released from this life and be allowed to come home again. Alas, and thankfully--at the same time--it's not His will yet.
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