Monthly Archives: October 2010

Ok..for real…let the stem cell begin

Hello again.

I realized that I probably left most of you thinking that I was already in the hospital in the middle of my stem cell treatment. Alas. This is not the case. I had a detour on my way there, but I’m back on track.

Two weeks ago I had one final PET scan to make sure everything was hunkey-dorey in my chest. But things are not hunkey-dorey. I have a small hotspot where my trachea divides, near my bronchial tubes, just to the left of the Isles of Langerhans (okay, that last one is a deep inside joke). I think this little spot is attached to, but not part of, the large mass in my chest. That large mass, by the way, is completely PET negative, which is a good thing. But what is this little, vague spot?

I consulted with a surgeon and a pulmonary doctor to see if they could reach the spot and get biopsy. For a number of reasons – involving the risk of cutting my chest open to get at this little spot, the risk of catastrophic failure if they accidentally puncture any of my major vessels, the difficult location of the little spot and the lack of tissue that a needle biopsy would provide – they can’t get it. At least not in way that would provide satisfactory results or not possibly kill me.

During this time I also got my stem cells harvested – in 1 day! For some people it can take up to a week or more, but I guess my bone marrow was highly motivated. I got a catheter put in my chest, went to harvesting and got the catheter taken out after the weekend. I’m left with my trusty PICC line in my arm…and I’m grateful that I don’t have any other tubes coming out of me.

So, after that little hiatus, the ‘committee’ decided that I should continue into my stem cell treatment after all. I’m not sure who exactly is on my ‘committee’ – my oncologist, the stem cell transplant coordinator, Jack Bauer, C. Everett Coop, the ghost of Jonas Salk and possibly my grandmom (affectionately known as Doc Julie). Whoever they are, they are unanimous in their decision. So away I go.

I’m admitted into the hospital on Tuesday, Nov. 2.

I get chemo for 6 days, followed by a day of rest.

On Nov. 10, I get my stem cells infused back into me. This is referred to as Day 0.

I spend another 1 1/2 to 2 weeks in the hospital, feeling like crap and under observation in semi-isolation. When my white counts creep above 50, I can go home.

My food will all be processed and sterilized. I can’t take a shower as any germs or chemicals in the pipes might get aerated and I might breathe them in (I can take gentle baths). I will brush my teeth with a sponge on a stick. I will work on my grad school assignments as best I can. I will play PS3 and watch movies. I will be patient. I will meditate. I will read. I will walk around the hospital floor to keep my blood flowing (I can’t leave the floor at all). I can have visitors, although they have to be not-at-all sick and not-at-all have been around anyone sick. No physical contact (except maybe feet rubs). No outside food unless approved by doctors. No plants.

Sounds like a vacation, eh?

I’ve been through some pretty bad chemo in the past few months so I think I’m pretty prepared for what’s to come. The worst part will be being trapped in the hospital for 3 weeks. I think I go crazy without fresh air, too many fluorescent lights and not being able to see farther than the opposite wall.

But breathing will help. Lots of deep breathing.

I’ll keep in touch and let you know how it goes.

Let the countdown begin.

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A short story

Let me explain to you why I don’t write on this blog much anymore.

Writing here is kind of like whenever someone asks me “How’re you doing?”. It’s a complicated question. If I told you about every small thing going on with me, you would probably have tears in your eyes. It’s only natural. The pain, the discomfort, the constant trips to see doctors and nurses, the shots, the blood, the depression, the fatigue, the bruises on my eyelids, the nausea, the numbing of my taste buds, the insomnia, the bone pain, the pills, the sympathetic looks people give me, the tube running into my arm – its all a bit much, really. But, in so many ways, it is how I’m doing. Thanks for asking.

I’m also doing pretty well, thank you. I’m happy. I’m surviving. Things are progressing. I have discovered a depth of love with friends and family and strangers that I never knew existed. I’m in remission. I’m (hopefully) going to be cured. I love school and academia and pursuing a new chapter in my life. I enjoy food much more. I have a lot of excuses for not doing things I find unpleasant. I get lots of nice mail. Thanks for asking!

So, what do I talk about here? Do I talk about what I think will help fellow cancer patients the most? The details about chemo and radiation and health care and treating Hodgkin’s Disease? I like that. I like being a place for information, for sharing my experiences to help other people get through their experiences. But I can’t speak to or for those people – each of our experiences is different, and I don’t pretend to understand.

Or do I talk about my reflections on life? People still ask me (mostly people I’ve just met) if this whole experience gives me a new perspective on life. Now, they don’t know my old perspective on life, so it is difficult for me to explain it to them. And I rarely take the time. Maybe I’ll say something like “I’m less of a dick now” or “Traffic doesn’t bother me as much” and they nod knowingly, as if I’ve imparted some deep wisdom of the universe. I think those people are idiots. And I think that is one of the stupidest questions I’ve ever been asked. Imagine if every time something bad happened to you, some joker came up and said “What did you learn from this?” What did you learn from this car accident? What did you learn from your best friend dying? What did you learn from stubbing your toe?

What did you learn? Hopefully, everybody asks themselves this question all the time, after good experiences and bad experiences. I think people who ask this question are the kind of people that don’t want to figure things out for themselves so they ask around a lot and hope someone else will figure it out for them.

The only people I can have this conversation with are sensitive nurses/doctors/therapists and other cancer patients…because we have some kind of a shared experience. I try not to ask a new mother what she’s learned by having a baby – because I’ll never really understand. So, non-cancer patients shouldn’t really expect to learn a whole lot from me.

Saying that, I read a very short story today that almost completely describes how I feel most of time. I thought I’d share it as a way to describe a little bit “What I’ve learned”. Enjoy.

Illegally copied from The Best American Nonrequired Reading 2004 – by Dave Eggers

When She Started Saying “Appreciate It” After “Thank You”

She was fifty years old when she began to do this, to say “I appreciate it” each time she said “Thank you”. She said these words during interactions with clerks, bus drivers, cabbies, cashiers, bellhops, telephone operators. While for the first four or so decades of her life, it seemed enough to say “Thank you” or “Thanks” or “Thanks a lot,” now she seems invariably to add “I appreciate it,” or more accurately, ” ‘Preciate it,” to her Thank yous. She can’t pinpoint when this happened, but it’s now involuntary, it’s constant, and the odd thing, the strange twist, is that she damn well means it every time. She really does appreciate it when people do kind things for her, no matter how trivial, no matter how expected the service might be given the person’s line of work. She is thankful when any human interaction goes off without a hitch, so thankful that her heart gets down on its knees in gratitude and her mouth translates this into words: “‘Preciate it.” Has she had so many ugly interactions in her life that she feels thankful for those that go smoothly? Perhaps. At her age, they have added up – the tussels with congenitally angry people, the random misunderstandings, the clashes with the uncompromising or the crazy. All she wants now is to pass through days with rancor. Days without rancor! She should engrave that on her door, tattoo it on her chest. Does she fear people? She does not. Is she affected when her meeting of a new person, in any context, goes poorly? She is devastated. For days she carries with her the sneers of surly pharmacy counter-persons, the inexplicable rage of the woman whose long-leashed dog got caught up in her legs and who somehow blamed her, the entangled! These conflicts affect her too much, she knows. Every one brings her close to a precipice from which she seems destined to fall into a two-day funk, and thus when instead of being pushed over she is pulled back and embraced, even in the slightest amount – is extended the most basic human courtesy – she finds herself soaring. Seeing her life as a series of potential skirmishes, she appreciates, damn well ‘preciates, peace of any kind.

Stem cell here we come

Hello all.

The reason I haven’t written in awhile is not because things have been so bad…in a way, it is because I have been feeling surprisingly good. My 3rd chemo was a bitch – as always. But with the proper medicines and treatment, it cleared up in the normal amount of time. The fatigue lingers for awhile. And when one part of my body feels better (sore throat) another part feels worse (Neupogen pain). But I roll with it pretty well.

The best thing going on is grad school. Besides the fact that I am very much interested in what I am studying, I also get to be involved with the undergrad students right away. I find the whole experience very uplifting and it has helped me put my whole cancer treatment into perspective. Right now, I’ve got two things to concentrate on: getting better and getting an education. Its a powerful set of motivators.

Although I am back in the hospital this weekend for an unexpected 4th chemo, I am approved to begin the stem cell treatment around October 11th. This 4th chemo is preventative to make sure I stay in remission during the time it took to get insurance approval and scheduling set for my stem cell. This sucks that I have to be knocked down one more time…but means to an end, I guess.

I also took a long, long walk around the hospital today. It is amazing the places you can go with an IV and not get stopped:

Picking up some extra hours working in receiving

The tentative schedule for my stem cell treatment is:

  1. Start taking high dose Neupogen right away – this will lead to a lot of bone pain and discomfort but also get my bones pumping away fresh stem cells
  2. Meet with doctors and nurses to sign consent and get my veins checked on October 11th. If I need a catheter, my old friend Dr. Loh is going to help decide whether I can get one in my neck or if they have to go into through my groin (much more uncomfortable)
  3. Stem cell harvesting will begin as soon as my counts are up – hopefully around the 13th.
  4. I could be admitted to the hospital as soon as the 21st.
  5. I spend a week getting high-dose BEAM chemo, then a day of rest.
  6. I get my stem cells put back into me, which is anti-climatic. They refer to this as Day 0 (some people look at it as their new birthday).
  7. I get 2 weeks of semi-isolation and monitoring at the hospital. This is going to be the toughest time – I’ll get all my favorite chemo side effects plus I’ll be exhausted from having my immune system wiped out. I’ll be very susceptible to infections, fevers and viruses.
  8. They let me out when my counts go back up and I’m under 24 hour care for the next couple of weeks (that means someone has to be with me 24 hours).

(Edit: At my brother-in-law’s urging, I think it is a good idea to try to explain what this process will do for me….thank, J Charles Berry.)

Right now, I am in remission. But based on what happened to me last year (I was in remission but the Hodgkin’s came back), this stem cell treatment actually has more to do with the BEAM chemo than with the stem cells. The BEAM chemo should wipe out every last damned cancer cell in my body – it is more intense chemo than I’ve ever had before. But doing such damage, it also destroys my bone marrow and my body’s ability to make new cells. So, in order for my cancer to be destroyed by the high dose chemo, the doctor’s need to harvest my stem cells and then put them back into body where they will find their way back into my bone marrow and start generating new cells within 8-14 days after they are infused. The stem cells actually do nothing to fight the cancer. The stem cell transfusion process is in place because, without it, I would not be able to generate new blood cells.

Here’s a bit more information about it: http://www.curehodgkins.com/hodgkins_resources/transplant.html

This also means that my body will be severely immuno-compromised while my stem cells get back to work. All of my natural anti-bodies will be wiped out. It will take months for my immune system to recover, and during that time I have to be incredibly careful about germs and bacteria – food, kids, doorknobs, hugging. All in all, I should get through it fine, I’ve held up well before.

Sure, I’m scared. Will the worst part be that I get really sick? Or is it that I’ll be really sick and stuck in the hospital? Being sick at home is a lot more comforting – and that’s my goal. To make it home as quickly as possible.

I’ll let you know more as I know more. But for now, things are moving along nicely. Glad to be in remission and taking these next steps.