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!
Purple Everywhere
Daily Herald picture
Friday, August 31, 2012
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
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