I Told You So

It's Saturday, and I'm not feeling that bad anymore. My stomach has settled a great deal, and the pain for my line has dropped at least in half (to a level 3 now).

So why was last night so hard for me?

I'm not sure why I couldn't just let the promises for this process sustain me without having a mini-meltdown, but I feel much better this morning.

Time for another dose of Fludarabine and Cytoxan, so off to LDS Hospital Dale and I go.

We're a bit late (10 minutes), but they're still not prepared for me, especially when I demand that we change anti-nausea drugs. (What about the dexamethasone I was promised?) And we neglected to give extra fluids (saline) with the Cytoxan that was mentioned on Wednesday. Can we fix both of those things?

Sure, but it takes a while to track down the new orders.

Finally, the dexamethasone is on board, the two chemo drugs finish, and we clear the building around noon.

For the next three days, I'll just get the Fludarabine, which isn't as potent, so I should be good to go.

And no nausea or vomiting yet. And very little pain, especially compared to last night.

Hip, hip, hooray!

Maybe Too Much Optimism

So sometimes I forget how hard things are when you're fighting cancer.

I know that outcome, so I just want to focus on that and stay upbeat and positive. Everything will work out okay, so why dwell on anything else?

Well, sometimes the pains of this life intervene in my plans.

I'm sitting here, absolutely sick to my stomach. The thought of any food makes me immediately ill. And I'm throwing up violently. I feel like I did when I was seven, when all I could do after each treatment is throw up violently for about 18 hours. Yuck! Darn Fludarabine and Cytoxan.

They gave me an anti-nausea medication by IV, but I warned them that ondasetron (Zofran) doesn't do it by itself. They wanted to prove that it wasn't enough though. Drat!

And the three places where they had to cut me to place my central line are pretty painful, especially the middle one. It feels like I'm constantly being cut by a sharp knife and that knife isn't being pulled out. In fact, it's staying in and being twisted every once in while.

So I'm in pain (maybe at a level 6 for me). It's ratcheting up the pain scale as the night continues onward. But I'm nauseous and vomiting, so I don't dare take anything for the pain.

I'm not looking forward to sleeping tonight. In fact, I feel like crying and having a little pity party for myself. Darn it!

Why do things have to get so hard? They'll be better in the morning. I know that, so why isn't that enough to pull me out of my funk tonight? Why can't I continue focusing on the outcome of all this? I will be healed!

Assuming Someone Else's Identity

I'm sitting at home, contemplating everything we heard yesterday at the Family Conference with Dr. Daanish Hoda in preparation for my allogeneic mini (nonmyeloblative) haploidentical stem cell (bone marrow) transplant.

Tomorrow morning (Friday, February 7), I'll have a central line placed on the left side of my upper chest and then start five consecutive days of chemo to kill off some of my white blood cells to make room for the new stem cells from my sister to grow.

And I can't help feeling like today is the last day of my old life and tomorrow is the first day of my new life. Technically, maybe, I can't truly say that until next Wednesday--the day before my sister's cells are actually transfused into me. However, tomorrow is the first day of the actual regimen, so that's how I'm feeling.

And I'm more optimistic about how effective this transplant is going to be against fighting my cancer and any future outbreaks of it than I was with the autologous transplant I had in August of 2011, when my own cancer-free cells were put back in me. Surprisingly, Dr. Hoda understands my logic and agrees with me.

But I also feel like this second transplant will change me forever. That's a good thing (no more cancer for a while), but it's also a bad thing (as graft-versus-host-disease kicks in and Tressie's cells war against my own). I feel like there will be some GVHD complications that will permanently be with me for the rest of my life.

Like so many things in life, this process has amazing parallels to the gospel of Jesus Christ.

Dr. Daanish said that we'll know the transplant was a success when, after some months or possibly a year have passed, they draw my blood and no longer see the properties of my own blood but see only the properties of Tressie's blood. When they look at my blood, they'll see only her blood. My immune system will be totally replaced by hers at that point, and that transformation will heal me of cancer.

Isn't that just what this life is about in spiritual terms? I'm trying to become like my Savior, Jesus Christ. I'm trying to let Him in me so deeply that when people look at me they see only Him--what He would do and what He would say if He were still on the Earth.

And only by accepting Him and becoming more like Him can He heal me--my sins and the pains and unjustices of this world.

Something to think about :-)

Bone Marrow Schedule

The new schedule for my allogeneic, haplo, stem cell, bone marrow transplant (BMT) is as follows:

*Friday, February 7
7 am: Have a central line placed by LDS Hospital's radiology department
11:30 am: Start Fludarabine and Cyclophosphamide chemo

*Saturday, February 8
10 am: More Fludar. and Cyclo. chemo

*Sunday, February 9
??? am: More Fludar. chemo

*Monday, February 10
11:30 am: More Fludar. chemo

*Tuesday, February 11
11:30 am: More Fludar. chemo

**Wednesday, February 12
9:00 am: Admit to LDS Hospital for total body irradiation and BMT

**Thursday, February 13
Receive my sister's stem cells and let them start the war between my Hodgkins-loving cells and her Hodgkins-fighting white blood cells

Sunday, February 16
Start high-dose chemo to kill my sister's T cells

Monday, February 17
More high-dose chemo

Tuesday, February 18
Start Tacrolimus and Mycophenolate to try and minimize any graft-versus-host-disease

~March, 8
Get discharged and start some period of being sequestered at home


Gee, aren't you jealous that your schedule isn't as exciting? LOL

*Usually patients are admitted for these days. However, because I've had so much chemo in my life and know what to expect, the BMT team is willing to let me try getting this regular dose chemo on an outpatient basis. If something feels wrong to me or I have any unforeseen complications, they'll then admit me.

**These are days that my sister is donating her stem cells through a dialysis-like process called aphoresis. Hopefully, I'll be allowed to visit her while she donates because she'll be in a room at the hospital that's considered part of the outpatient clinic at LDS Hospital on the 8th floor (which is the same floor where I'll be staying).

~This is my planned discharge date--3.5 weeks after being admitted. However, the BMT team told me to count on 4-5 weeks of hospitalization, which would stretch my discharge date until March 14. I know they told me to count on 4 weeks of hospitalization for the autologous BMT and I was out in exactly 3 weeks, so I'm hoping my 3.5 week plan works for their estimate of 4-5 weeks--especially because they're willing to let me try the first five days without being admitted.

Delays for Second Bone Marrow Transplant

I'm not sure what exactly happened, but I was supposed to have started chemo already, in preparation for my second bone marrow transplant (BMT)--this time an allogeneic haplo transplant.

I do know that my sister, Tabitha, who was going to be my donor said she hadn't been medically cleared to be my donor because she'd been to places in Mexico where there are malaria concerns.

So my sister, Tressie, stepped forward--even though she absolutely is terrified of all things medical, especially hospitals and needles. And I know the BMT team at LDS Hospital told Tressie that she'd be medically cleared, even if she had been to Mexico recently.

Like I said, not sure what happened with Tabitha; but I am grateful that Tressie is willing to be tortured by medical personnel on my behalf.

BUT this all puts a damper on my schedule. I think it's by divine design though.

I feel like things will change for the worse somehow in my life. I feel like the transplant will extend my life for at least a few years (I'm hoping for 7-10), but that there will be some complications from the war between my cells and my sister's that won't be pleasant.

I was just beginning to gear up mentally to start that war when it all had to be postponed while Tressie completed the vetting process, so now I'm just anxious to get it started.

Plus, I feel like, if the transplant doesn't happen within two months of my last chemo dose, the Hodgkins will be back. My last chemo dose was December 11th, so we have a tight window that's contributing to my anxiety.

However, we have a new tentative schedule, so we should be okay.

No More Hodgkins For the Fifth Time

Time to meet with Dr. Wendy for the results of the PET scan.

Dale has to work, so Miriam graciously agrees to accompany me.

I'm not sure what the results will show, so I prepare as if I need more chemo (darn that itchiness!) and pack my water bottle, two games we can play, and a book I can read if Miriam is tired of games.

Here we go!

After the preliminary check-in stuff (weight, review medications, BP, O2, heart rate, and temperature), I hear the familiar click-clacking of Dr. Wendy's heels leading to my exam room door.

And. . .

IT'S GREAT NEWS! No more cancer. For the fifth time in my life, I'm officially in remission.

A quick blood draw from my port and we're out of there.

I'm ecstatic! Time to party! When I tell Miriam that we need to celebrate, she suggests that we have a big party tomorrow night. No, wait, this is big enough (beating cancer five freaking times!) that we need to make it a country-wide thing. Miriam says, "No, a world-wide party."

So here goes. . .

THE WORLD is officially invited to celebrate that I, Trisha Mae (Turner) Howard am officially in remission from Hodgkins lymphoma for the fifth time in my life,

On Tuesday, December 31, 2013 in the evening hours,

By eating treats, playing games, and gathering with family and friends.

That doesn't seem big enough somehow. Heck!

Light off fireworks too. And gather in large groups if you're near metropolitan areas!

It's party time everyone :-)

There! That seems fitting now.

Waiting Is the Hardest Part

PET scan was complete on Thursday (12/26).

Dr. Breyer called me personally with the results of the last PET scan on Friday night about 6:00 pm. So I waited, hoping to hear the results of this scan, but no phone call.

It's okay. The scan will either show less cancer than last time, or no cancer.

But dealing with the "What ifs" that go with each scenario are the hardest part!!!!

And, if I'm being honest, my back is almost incessantly itchy again, just like it has been for the previous three Hodgkins occurrences. (I don't remember it itching when I was 7.) The itchiness is what clued me in that the Hodgkins was back after the aortic valve replacement, so that's not a good sign. I guess it's possible that the scan could show more cancer than last time because it's spread or the Adcetris has stopped being effective,

I make it through to Sunday night okay and am able to sleep pretty well. However, Sunday I have to watch an entire movie before I'm finally able to sleep around midnight.

We'll know in the morning!

PET Scan Time

It's almost rude.

It's 8:15 am the day after Christmas; and, once again, I'm forced to focus in on Hodgkins lymphoma. This time it's because I need to be at UVRMC in Provo by 8:45 for a PET scan.

After four doses of Adcetris (brentuximab vedontin), it's time to see if that chemo has done it's job.

I hate how you have to register at a kiosk, by typing in your last name, first name, birth month and day, and the department you need. Then wait in a reception area to register.

So what was that registration at the kiosk? And what was that phone call I answered about three days ago to pre-register?

I have to answer questions over the phone to pre-register, register at a kiosk, and then wait to register again for the final time?

Someone needs to fix this system!

It's also interesting to me that IHC hospitals require a finger poke to check liver function before they'll let you absorb contrast into your body. (To whine for a moment, I hate the finger pokes. I'd rather you draw my blood than poke my finger; a needle stick hurts less than the puncture wound.)

Plus, lately, it's not just a simple poke. They really have to jab deep because they're filling three pipettes (or small tubes) with blood. I know they're also testing blood glucose levels, but diabetic meters are all boasting how little blood they require these days--less than a drop.

So why three pipettes? Why the deep stab? Why the 2-3 minute process to "milk" my finger and squeeze all the blood you possibly can from the end of my nerve-damaged finger?

Luckily, the first part of the process goes fairly smoothly: access the port, inject the radioactive sugar, dim the lights and have me recline in a chair and wait 70 minutes while occasionally drinking about 16 oz. of oral contrast.

As I'm resting, I'm trying to count how many PET scans I have thus far in my life: at least 4-5 in the portable trailer at American Fork Hospital, at least 2 at Huntsman, one at the hospital off 5300 South in Salt Lake, and now this one at UVRMC. At least 8 total, and I'm pretty sure I'm forgetting at least two. Whew!

From all of those PET scans, I'm getting really good at judging how much time has passed while I'm resting and waiting for any cancerous lymph nodes in my body to absorb the radioactive sugar. Try it. If you're forced to rest in a dim room and do absolutely nothing but sit and wait, can you judge when 60-70 minutes are up?

Time for the CT and PET scans. Nothing new there either. Lay down on my back on a narrow hard table with my head in a strange foam pillow, arms above my head, stay absolutely still as the machine does 2-3 quick passes for the CT scan without contrast, then continue as the machine starts at my knees and spins about five minute, then moves to the next position (for a total of five different positions) until about 30 minutes have passed, then inject the IV contrast (that makes your lower abdomen feel very warm--like you've wet yourself) and wait for another 1-2 quick passes of the CT scan with contrast.

Ta-duh! Unhook the contrast tubing, flush the port, de-access the port, and you're now free to leave the premises with no hint as to any results.

Isn't modern medicine fun? lol

Article in The Daily Herald newspaper in Provo

Check out this link: http://www.heraldextra.com/news/local/cedar-hills-residents-declare-purple-war-for-neighbor/article_ad23cfdf-26cb-5ee3-a724-f1e412ff7e82.html

It's absolutely amazing that I'd ever be in the local paper!

Next, Next Step

Back to Dr. Wendy's office to find out the results of the recent PET scan.

I wonder what we'll find out, but I have absolutely no inspiration or feelings as to the results. It would be great if the cancer was totally gone, but either way it means radiation.

These are all the possibilities for this fourth occurrence of Hodgkins Lymphoma and their probable courses of action that I can come up with:

* It's gone, so we'll do follow up salvage radiation like we did before on my left inguinal lymph nodes.
* It's in one place only (right inguinal lymph node), so we'll do targeted radiation to remove it completed.
* It's in more than one place, so we'll continue chemo (for up to four more doses) as long as it's responding (shrinking) to the Adcetris.

Dr. Wendy reads part of the PET report to me. There's still lymphoma in my right inguinal lymph node. Originally, it measured over 19 on the activity level of the PET, now it's barely over 2. But there's no activity anywhere else.

Okay, no real surprises there. So all of the other eight spots that originally showed cancerous activity are gone. And the one remaining place is so, so close to being gone that chemo won't reach it anymore. So she's recommending me to Dr. Jay Clark for radiation treatments.

I don't know how those treatments will differ (if at all) from the salvage chemo I received last time, but that was easy with no side effects. Hopefully, it will be more of the same this time.

Oh wait. What about the possibility of a second bone marrow transplant, I ask. When should I follow up with the BMT team at LDS Hospital?

With a slightly surprised look, Dr. Wendy responds that I should probably consult with them before doing any radiation treatments because she doesn't want the radiation treatments to conflict with anything the BMT team wants to do. So wait to hear from LDS Hospital before scheduling with Dr. Jay.

Whew! It's a good thing that patients advocate for themselves and keep their doctors on track.

I wait to hear from Rachel Beers at LDS Hospital. She feels like one of my best friends by now after being the point of contact throughout the entire autologous bone marrow transplant process. She got a very terse message from Dr. Wendy's office and calls me for clarification. I'm able to clarify that the lymphoma is very close to being gone but needs radiation and we don't want to proceed with that step if it will interfere with the possibility of an allogeneic (from a donor) bone marrow transplant.

After checking with Dr. Julie Asch (another friend by this point of my life), she assures me that I can proceed with radiation.

I call Dr. Jay's office, only to find out that Corinne left early and forwarded all calls to, what seems like, an older female friend. That person isn't in the office and doesn't have access to the appointment books so now I have to wait for Monday to call. Annoying because I'm supposed to be covering for my team at work while they attend a conference in San Diego. I don't know whether to go to work on Monday to cover for my team or try and work from home with the hope that Dr. Jay can fit me in his schedule on Monday.

Why do health professionals have to take off before 4:30 p.m. on Friday without any way to get answers to pressing medical questions?

Broken Ankle Follow Up

Dr. Garrett asked me to return for follow up x-rays on my left ankle about two weeks out, and it's been two and a half weeks, so I head back to Urgent Care in Lindon.

Dr. Garrett is out on Spring Break, but a nurse practitioner is available to see me, so I head back to x-ray to get follow up images.

I never asked what part of my ankle I broke, so I ask the technician if I can see my earlier x-rays to see what I broke. She needs to know what x-rays to do, so she pulls them up and the formal report from the radiologist who read the x-rays after I left Dr. Garrett a few weeks ago.

She pulls up the x-rays and shows me where an earlier break of my malleolus occurred. (The malleolus is the rounded bony prominence on the outside of each ankle.) She can tell it was an earlier break because the edges are all rounded and smooth--evidence of a healed broken bone. And she points out the sharp jagged lines of what Dr. Garrett assumed was where I broke it this time. It's a smaller break, about a quarter of the size and behind the earlier break.

She pulls up the radiologist's report and we read together that he notes the earlier break but doesn't see evidence of any other breaks.

Wait a minute? I've been clunking around in that stupid boot when I didn't need to? Forget that! I'm ready to be done with the walking boot. Hooray!

The technician doesn't want to subject me to more radiation for a non-break, so back to the waiting room I go to wait for the nurse practitioner. She's fast and a few minutes later we're discussing my foot. She's looked at the old x-rays and the radiologist's report and is absolutely convinced I have broken my ankle and doesn't really know how to explain the report--except that radiologist's in her opinion can't be trusted.

She proceeds to tell me about a violent pain she had in her stomach for a while ago, insisted upon CT scans, and read the radiologist's report that all was normal. She insisted on seeing the pictures herself and noted lots of fluid accumulation right where she was feeling the pain. Turns out she needed surgery but felt immediately better after the surgery.

I recounted my own recent experience of having a CT scan to track the progress of chemo in shrinking the tumor in my right inguinal lymph node and not having the radiologist even mention the lump in his report. Then having to have them go back into the scans, measure the area, and add an addendum to the original report with the new measurements.

I can understand how they might miss a small break if they miss measuring a tumor that we've been tracking for several months now and were asked to compare the size to previous scans that were done at the same place (Central Utah Clinic in American Fork).

So back to x-ray we go to compare old films to new films to see if it's healing. The malleolus is supposed to be one bone. It looks like the new break is healing but it's not healing or attaching itself to the malleolus; instead, it's a separate little disk of bone that's just out there by itself.

She asks if it's causing pain. (No, because I can't feel my feet due to the neuropathy.) And then suggests that I come back in another two and half weeks to ensure that it continues to heal. If it was causing me pain or making it more difficult to walk, she recommend surgery. However, it's hard to tell if it needs surgical intervention because walking is difficult anyway, and I can't feel my feet.

The comedy of errors that is my life--it isn't broken, but wait it really is--continues!

PET Scan

I was too sick with bronchitis last Thursday when the PET scan was originally scheduled, so it's rescheduled for today at 12:30 p.m. at Huntsman Cancer Institute.

It's a beautiful building with amazing materials and gorgeous stone that high on the mountainside behind Primary Childrens and the University of Utah hospitals. Just walking in seems like entering a place of authority that knows what it's doing and calm assurance.

I get to third floor radiology and am almost immediately taken back for the PET scan.

Whoops, but my port isn't accessed and the technicians haven't been trained how to access ports. Weird, because I swear that last time, they accessed it okay.

But they have to find someone else that can access ports, so I'm wheeled off to mammography or the breast health department (trying to balance a large oxygen tank and it's cart on top of the arm rests) that's just down the hallway.

I'm amazed to watch as the nurse in the lab has to use sterile technique to access the port and even comment about it. It's interesting to see the different protocols that different medical facilities use, because Dr. Wendy's clinic (which is part of Huntsman Cancer Institute) doesn't use sterile technique, just a fresh pair of gloves to access my port.

The port is successfully accessed, so I'm wheeled back to radiology where the radioactive isotope is injected and the long waiting period begins.

The lights are dimmed, I'm covered with two warm blankets, and I proceed to rest quietly (without moving) for 75 minutes. I'm getting pretty good at accounting for the passage of time because just about when I think it's been 75 minutes, the doors open and I'm whisked off to the CT/PET machine.

No oral or IV contrast, and the scans are complete in about 35 minutes.

I'm free for the rest of the day. Well, as free as I can be with a walking boot on my left foot and dragging a large oxygen tank and its cart behind me. I even manage to snag a fun size Twix bar from the valet attendants that's left over from Easter (because I've been fasting since 6 a.m. and it's now after 3:00 p.m.).

Now to drive back home.

Next Step

So where are we at now?

I meet with Dr. Wendy again to see what the recent CT scan showed.

And it doesn't seem like the one tumor we know about is changing much. It's probably too small for the chemo to accurately target it.

"So now get a PET scan and see what we're dealing with," I add.

And immediately, I'm harassed by Dr. Wendy. "Why do all of my patients today like to second guess me without listening to me."

"Well, it's not like any of this is a surprise to me. We've been down this road several times together," I remind her. That seems to mollify her.

Okay, so no chemo today. Instead, I'll wait for a PET scan to be scheduled at Huntsman Cancer Institute in Salt Lake City again.

CT Scans and Contrast

It's the day before my CT scan is scheduled, so I have to pick up oral contrast to drink tonight and tomorrow morning before the scan.

On my drive over to Central Utah Clinic's (CUC) Imaging Department, I start thinking about all of the radiologic scans I've had for cancer over the years, lymphangiograms, CT scans, PET scans. I'll bet the numbers are starting to approach 100 (or at least it feels that way to me). That's a lot of contrast that my body has had to deal with.

Every time I have a scan, the technologists seem surprised that I'm not diabetic yet, like my body (pancreas, kidneys, and liver mostly) hasn't started refusing to work properly because of everything it's been subject to so far.

Actually, now that I'm thinking about it, it seems like I was told in the last month or so that my liver enzymes weren't quite normal in a recent blood count and I should start watching that.

Now, I'm a little paranoid about the amount of contrast that I've been pouring into my body; and I'm on the way to pick up two more bottles of the stuff? Not to mention the IV contrast they'll also shoot through my port?

And there's no accounting for body type or size in the contrast they hand you. "CT Scan of the abdomen? Here, drink these two bottles." It didn't matter if I had the scans done when I weighed 231 pounds or now that I'm down to 164 pounds. They want me to pour the same amount of junk into my body and let my kidneys and liver fight to filter it out. That just doesn't seem right.

I arrive at the Imaging Department a little ticked off at Central Utah Clinic's protocols. Huntsman Cancer Institute in Salt Lake City doesn't use any contrast--oral or IV--for PET scans, which are even more detailed than CT scans, because their radiologists have realized the contrast doesn't improve the quality of the pictures enough to justify the potential havoc it can wreak on already-weakened bodies.

So I ask to speak to the radiologist at CUC. Surely, they've got to give some on the amount of contrast they demand when considering my body and all it's been through.

I'm politely told that the radiologist is in a procedure with another patient and they don't usually talk to patients anyway. It's okay. I'm determined. I'll wait. Exasperated by my stubbornness to be heard, the receptionist goes to find a technician that will talk to me. I can hear part of their interchange as I wait at the desk.

"I'll go talk to her. The radiologist is busy."
"Yeah, good luck with that."

So I start telling the technologist that I'm worried about pouring more contrast into my body when it's obviously been through so much already, and that there's no consideration for body type or mass taken into account when handing out contrast.

"You're a male, professional defensive linebacker who's 6'5" and 350 pounds? Great. Drink these two bottles of contrast." "You're a female cancer patient who's 5'0" and 164 pounds? Great. Drink these two bottles of contrast."

Then, and only then am I offered a different style of contrast. One that doesn't take the body 4-5 days to break down, just a couple hours, and one that doesn't have any known side affects or possibility of damaging bodies. I just need to arrive tomorrow morning an hour earlier so I can drink it in the office.

Why aren't patients made aware of the choices they have unless they really push back--hard!--at what's being asked of them?

I arrive the next morning an hour earlier and am asked to drink about half of the volume of what those two bottles of contrast contained. I still leave about a swallowful of the new contrast in the bottom of the glass, just on principle! But I'm pleasantly surprised to find that this new contrast tastes much better. No chalky, milky stuff that I'm afraid my body is conditioned to gag on by now. Instead, it's almost a translucent tart substance.

So I didn't convince them not to give my any contrast, but at least we found a less dangerous and less volume (that still isn't based on my body type or size) compromise.

It pays to speak up and advocate for yourself!

Another Hiccup

So maybe I don't make the best choices sometimes.

It's Sunday, St. Patrick's Day, and I want to wear a pair of green wedge platforms for the holiday. I took trial run with them Saturday night to the adult session of Stake Conference. They're not heels where I'm forced to try and balance on the soles of my feet only and they're only about a 2.5" platform, so I figure it's safe to proceed

We have about ten minutes before we have to leave Sunday morning. Everyone's ready or finishing their preparations, so I head back to the closet to grab my green platforms. Before I make it out of our bathroom, I've managed to roll my left ankle pretty severely and even cry out from the pain and the suddenness of being so off balance; but I'm determined to proceed.

I make it out to our living room where Dale, Miriam, Travis, my sister Tressie, her two daughters Karli and Kayla, and some other girls are waiting for us to leave. Before I've moved two steps from the edge of our couch, I roll my ankle twice more, with Dale having to reach out and catch me the last time.

Without missing a beat, he asks "What flats should I go get you?" and he kicks that pretty green platform right off my left foot.

Darn! I guess you shouldn't try to wear platform shoes when you can't feel your feet. If you can't walk or balance in regular shoes, any type of heel probably isn't the best decision.

We make it to Stake Conference and are ushered to the front so that Dale, Tressie, and I can sit together at the end of a row (while Miriam, Travis, and the rest of the girls get to sit in the back). Travis is carrying my bag, so it goes back with them without me realizing that I don't have it.

Almost as soon as I sit down, my foot starts throbbing. It's not so painful, but I can feel every heartbeat vibrating through it and there is a little pain associated with each beat.

"Dale, I think I need to go out and prop my foot up," I whisper to him. So a few minutes later, I'm hobbling on one good foot and dragging a large oxygen tank and its cart out the chapel doors to the nearest couch.

Tressie comes out a few seconds later and offers to drag a folding chair over as a place to prop up my foot and that's how we spend Stake Conference.

On Monday, my foot is a little swollen and a little bruised and I wonder how much damage I really did to it. Because I can't really feel it, is it possible I broke it and don't know?

Knowing my propensity for having multiple issues with my body, I head off to Urgent Care in Lindon.

"I need to have my left ankle x-rayed to ensure that I didn't break it," I inform the front desk staff and the attending nurse. I'm assured that I'm the next patient and that the doctor will be with me shortly.

After what seems like an hour and after I've had a chance to devour an entire magazine, I hobble out to find my sheet on the door and look at the time I was checked in. 11:08 a.m. It's now 12:06 p.m., so it has been an hour. I'm kind of surprised that my internal clock is so accurate.

When I ask the nurses how much longer, they agree it's been too long and they'll take me back for x-rays before the doctor sees me so he can look at them when he's finally finished with the other patient.

About ten minutes later, after x-rays, Dr. Garrett Smith comes in and says, "Yeah, well you did a good job. I'm pretty sure your ankle is broken. You'll need to be on crutches for at least two weeks."

Knowing what my body has been through and that chemo zaps calcium from bones, I automatically translate, "Okay for me, that means at least four weeks and probably more like six." Then I say, "Yeah, well as soon as you help me figure out how to hobble on crutches while dragging oxygen around, I'm all over your plan." Crutches are just not going to work.

During our conversation, I tell him that I can't really feel my feet due to the grade 3 or 4 peripheral neuropathy. Yet twice during our time together, he says "Just let pain be your guide. If it's hurts, don't walk on it" and "I can prescribe something for pain."

Pain? What pain? If I think about it hard, there might be some aching bone pain that might register about a 3 on the 1-10 usual pain scale. I'm certainly not taking anything (not even Ibuprofen) for a 3. And if I can walk on it as long as it doesn't hurt, I'm good to go now.

Nope, not without having to discuss whether we should cast it or put a walking boot on my left foot.

"What's the easiest to walk on?" I ask. Definitely the walking boot, so I'm fitted with a large, clunky, heavy black boot before managing to leave the office.

My life is a comedy of errors at this point. Hobbling around in a heavy walking boot and dragging oxygen is quite the balancing act, without bringing the numbness from the neuropathy into the equation. What else can I do at this point but just laugh? And laugh I do!

When one of my visiting teachers hears that I've broken my ankle, her first impression is to bring her family home from Disneyland so she can help me. Are you kidding? It's a great thought, but my ankle is just another silly part of my life right now. It's not like I need surgery or it's bad enough that I can't be mobile. It's just a laughable addition to my life at this point. The thought is comforting and amazing but definitely not needed!

Tenth (and Last!) Adcetris Dose

You can tell that Dr. Wendy is consulting with others about my case in between my treatments. Today, she has an entirely new plan.

We'll go ahead with today's dose of Adcetris, then get a CT scan to see where the tumor is at. It seems chemo isn't as effective at reaching cancerous tumors once they're smaller than about a centimeter, so we might have to do radiation to get rid of it entirely.

No real changes with chemo. It's just business as usual, so we'll wait to see what the CT scan shows.

Ninth Adcetris Dose

There's not much to tell.

We keep doing chemo. The affects are pretty well managed now, but I'm starting to feel sick from some kind of sinus infection, so Dr. Wendy gives me a prescription for an antibiotic, one I've not heard of before--Keflex.

The peripheral neuropathy seems to be increasing, but maybe it's because I'm more aware of it in my arms and legs now. Like, my legs are numb about halfway up my thighs now and especially on the insides of the knees.

The plan is to do twelve doses of Adcetris total. That's just two more after today. The tumor keeps shrinking and is almost gone, so that should take care of it. We'll do a CT scan, then wait about a month and do a PET scan and see where we're at.

Life keeps marching on, and I'm definitely still kicking!

Eighth Adcetris Dose

At least halfway through chemo after today. 8/16 or halfway through the maximum amount of Adcetris doses allowed.

If it continues as well as it has been and the peripheral neuropathy eases up, the rest of the doses should be no problem.

Although, if I'm honest, ever since my last appointment and the fact that Dr. Wendy can no longer feel the largest tumor, my hope is that we'll schedule scans in the next three weeks (normal procedure after every two doses, so it's time again), and those scans will show no more cancer.

Not a lot to report today, although I do think the peripheral neuropathy in my hands is slightly better. It's a little easier to write longhand and to type. I can tell because I'm not watching my fingers or using the Backspace key as often. But my balance actually seems worse lately and I can't tell that there's any improvement in my feet and legs. Darn!

Dr. Wendy sounds disappointed that I haven't seen a bigger improvement, but she's grateful that it's not getting worse so we'll continue the reduced dosage.

Visit with Dr. Wendy, draw blood work, three anti-nausea medications, Adcetris, and two hours later I'm out of there.

A CT/CAT scan is scheduled for Monday, February 11. Hopefully, it's great news--no more cancer; and we can be done with Adcetris for at least 7-10 more years. That's what I'm hoping for and what would qualify for "this treatment exceeding all expectations."

Fast and Testimony Meeting

During the prelude music and start of Sacrament Meeting, I'm contemplating on how good I feel for going through my fifth regimen of chemo. And I realize that my rather foreign pessimistic outlook of late is gone. I no longer feel so dark inside, like I'm fighting a losing battle. Sure, the next instance might kill me, but I might have a long time before the lymphoma is back. I have hope again. These are truly amazing discoveries!

And, as usual, I start scanning the congregation and reflecting on how many individuals in our ward that I feel truly supported by. I love these people and there's way too many to list.

A few things definitely stand out though: purple flowers planted in our flower beds by the Mia Maids, a large container filled with purple flowers from Jana, purple flowers and a cuddly blanket from Sandy, a very touching note from John and an equally touching post/email from Jennifer, and a beautiful chest of notes from lots of people and delivered by Maddie on a night when everything seemed really black and hopeless.

Suddenly, I'm overwhelmed by all of the love and support that I feel. All of those prayers are why this regimen is treating me so well so far. I know it. It's a great tender and miraculous mercy from our ward members who are definitely acting as the Savior's hands here on the earth.

Thank you all. I'm truly touched and grateful!

Seventh Adcetris Dose

Dr. Wendy can no longer feel the largest tumor at the bend of my right leg. Wow! Wouldn't that be awesome if the cancer is gone!

I've lost 13 pounds since the last dose. That's just over 60 pounds total over the last nine months. Yahoo! I want to lose at least 15 pounds so I'm no longer in the obese BMI category. Dr. Wendy is concerned, but I've been eating well so I'm just grateful.

We have a longish conversation about peripheral neuropathy though. I'm not happy about that. I describe some of the limitations I've noticed:

* Fingers are completely numb and my hands are at least 3/4 numb.
* Forearms are at least 1/2 numb up to my elbow.
* Feet are at least 3/4 numb.
* Legs are at least 1/2 numb to the bottom of my knee.
* Typing is very difficult and I often hit the wrong key. Backspace is now my best friend.
* I can't play the piano or organ any more without having to watch my hands to see what keys I'm playing, plus I can't control that they continue to hold any keys so they randomly lift and quit playing at odd times on the organ.
* My handwriting has changed drastically and now reminds me of an 80 year-old woman's handwriting because it's difficult to hold a writing utensil and control the strokes.
* I can't button blouses or jeans or feel zippers to pull them up.
* Hooking my bra is impossible.
* Putting in earrings and--even more difficult--putting on their backs is now impossible.
* It's hard to walk in flats. Forget heels entirely!
* Balancing is almost impossible on dry ground. I fell in Target and have almost fallen twice at work. Didn't trip on anything; I just can't feel my feet to place each step securely and firmly.

After leaving the room for a few minutes, Dr. Wendy returns to say I have peripheral neuropathy, Grade 2 or 3. The guidelines for Adcetris call for stopping chemo until Grade 1 returns.

I'm not comfortable with that. These affects can be permanent. What if we never get back to Grade 1? After some discussion, she agrees to continue Adcetris, but on a reduced doseage. We will reduce the 1.8 unit/kg to 1.2 unit/kg. I don't like that we're reducing the dose by a full third, but at least we're continuing forward.

Do you know what else I've noticed? The doses are getting easier. What's up with that? In my entire history of chemo, every dose gets harder and harder--zapping almost all of my physical and emotional energy. Plus, every different chemo regimen gets harder and harder for my body because of all the former rounds (MOPP, ADV, ICE, BEAM, and now Adcetris) and poisons doctors pumped into it.

Not now. In fact, I've even started driving in to work 2-3 times a week. Wow! I'm am definitely not complaining. I have energy to do whatever I want (as long as I don't try to move my numb feet too fast) and I'm mentally alert as well.

The nausea is contained. The bone pain is being managed. This is great! More than I ever dared to hope or plan for. Hooray!