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.

It's Just a Hiccup

It's Monday morning and I get a phone call from Dr. Julie Asch at LDS Hospital.

She starts, a little hesitantly, "So you had a PET scan on Friday."

"Yep, and I've already read the results. I told my husband in the ER on Saturday after reading the report that it looks like the Hodgkins is back. This time, it's centered around my trachea. It's really small though because we caught it fast. Maybe two doses of chemo will kill it?"

She laughs. "You're right. And exactly along the lines that I was thinking. So it's good we're both on board."

"I predicted this would happen--that the Hodgkins would come back if we had to wait more than four months after the radiation was over for my heart to heal before we proceeded to the second bone marrow transplant."

"After you're done with these cancer treatments, I'm going to hire you."

"No, I know my own body well, but I can't do this for anyone else."

"Well, I'll turn you over to Dr. Wendy then for a few more chemo treatments, and see you when that's over."

Later that night, I ask Dale how he's feeling. To me, this occurrence is just a hiccup, a slight detour from the path. But how is he feeling to know that I have cancer for the fifth freaking time?

And he concurs. "It's just a hiccup, Trish."

We must be the weirdest people in the world. I'm sure some people would be in a major depression to hear that they have cancer; some probably contemplate suicide or think their life is practically over with such a diagnosis.

Us? It's just a hiccup. No biggie.

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?