Presidential Prerogative

pro-mosque protesters
Creative Commons License photo credit: derek7272

I see President Obama felt the need to comment on the issue of building a mosque near Ground Zero. I wonder why. Even though NYC Mayor Michael Bloomberg praises the president for his strong support for the building of the Cordoba House, the president tells us that he is not actually commenting on the wisdom of building the site, but instead reminding us that all Americans have a fundamental right of freedom of religion. True, but did we really need the president to remind us of that? And did he really need to risk his political capital to say it?

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Our Cancer Year

BOOK | NON-FICTION | GRAPHIC NOVEL | HEALTH
OUR CANCER YEAR
by Harvey Pekar

RATING: ★ ★ ★ ★ ★

Harvey Pekar
Harvey Pekar
I have been neck-high into the medical establishment since my leukemia diagnosis in November 2009. Consequently, while I do not consider myself an expert of the establishment by any stretch of the imagination, I do believe that I am far too acutely aware of it. But, I guess that is to be expected from someone as critically dependent upon it as I am.

In addition to my practical experiences with hospitals and doctors and examinations and extremely long needles, I have also spent much time reading about the establishment, especially that aspect of it which relates to the treatments of leukemia and chronic graft versus host disease (cGVHD) of the lungs.

Most of my medical-related reading has been as research conducted on the internet.

Thank god for the internet. I am one of those annoying types who like to be knowledgeable just enough about something to make me, if not dangerous (which it just may), then certainly annoying.

I’ve come to find out over the past three years that doctors are a lot of fun to annoy.

While there are probably more books about cancer out there stalking, I mean, stocking the shelves than there are cancerous cells, I don’t recall ever reading any of them.

I don’t know why. Maybe because they all seemed too sanitary or too personal or too impersonal or too whiney or too who knows what.

I didn’t so I just left them all alone; that is, until I learned that the legendary Harvey Pekar had his own version of a cancer story to tell.

Pekar, who died recently, is famous for his graphic novel series AMERICAN SPLENDOR, in which he chronicles his life as a VA Hospital file clerk in Cleveland, Ohio. It doesn’t sound like much to work with — Cleveland, file clerk, VA Hospital — but somehow it has endured through the years and was even turned into a flick starring the always spot-on Paul Giamatti as Pekar.

In 1990, Pekar was diagnosed with and treated for Non-Hodgkins Lymphoma. Four years after surviving through that experience, he collaborated with his wife Joyce Brabner to publish an AMERICAN SPLENDOR-like graphic novel called OUR CANCER YEAR.

OUR CANCER YEAR is a gritty, honest and, sometimes, horrific portrayal of what life was like for Pekar and his wife while battling the disease.

But it is about more than just his experience with cancer. Pekar’s wife is also a comic book writer who focuses her work on peace projects. Through her efforts, we are provided side story glimpses about Operation Desert Shield and her work with teenage peace activists. And, because they had recently purchased a home at the time of his diagnosis, we also have the added stress that comes with buying a home on top of everything else that is happening to them.

I found the book interesting because Pekar really was able to bring out the hope and heartache and stress and pain that one, and one’s loved ones, must endure throughout the entire cancer experience, from first finding out about the disease, to all the damage that the chemotherapy treatment does to the body, to the overwhelming toll it takes on those closest to the cancer patient trying to care for him. It was also interesting to me to compare how he managed to cope with the disease versus how I tried to manage.

Let’s just say he is a glass half empty kind of guy. While I typically am too, I never felt as down about the disease as he apparently did.

While Pekar and I had many similar experiences battling our respective cancers, we also had many differences. One of the most significant differences was a painful experience that he had to go through that I never did (at least not yet–knock on wood). Pekar contracted Herpes Zoster, also known as shingles. For some reason, Shingles are a big threat to chemotherapy patients. Thankfully, my doctors were very aggressive about it and put me on an antiviral drug called Valtrex (Valaciclovir) as a preventative measure for at least a year, and which I will probably take for the rest of my life. Pekar also suffered much worse hallucinations and anxiety than I did as an effect from all the drugs cancer patients typically have to take.

While most of what you need to know about the medical establishment in general and cancer in particular can be found on the internet, some things can’t. In my perspective, if you really want to get telling insight into the hardships that come with having cancer you either need to experience it yourself first-hand, which I emphatically do not recommend, or you need to experience it in a less graphic but completely realistic and touching way, like reading Pekar’s graphic novel OUR CANCER YEAR.

~~~~

Rating System:
★ = Unreadable
★ ★ = Poor Read
★ ★ ★ = Average Read
★ ★ ★ ★ = Outstanding Read
★ ★ ★ ★ ★ = Exceptional Read

After the Transplant

Thinking back, the amount and potency of the chemotherapy that I received during phase one and phase two of my treatment were a pittance compared to what I received for my bone marrow transplant. During the first two phases I thought to myself, ha, this chemo stuff ain’t living up to all the hype. Sure, I lost my hair but it started growing back not too long after the end of each phase. And I never got so sick to where I had to become intimate with the toilet. Not so during the two weeks of chemo treatment before and after the transplant. The doctors really laid it on me with a vengeance then. I got pretty darn sick, especially in the mornings. It’s almost three months later and I would even say that I may still be suffering somewhat from the effects of the chemo I received prior to and after the transplant. And it doesn’t help any that I’m still getting a small dose of it shot into my spine every two weeks.

While I don’t get sick to where I have to pay homage to the toilet anymore, I do get some bad heartburn for a couple of days after the spinal taps. I also still get light-headed when I stand up and, because of my low energy levels, I can only contribute minimally to chores around the house. My counts are steadily rising to normal but they are all not there yet. My platelets are still low which makes it very easy for my skin to cut and bruise and very hard for the injuries to heal. I’m still anemic. It seems that I have a symptom of Graft Versus Host Disease (GVHD) in my mouth: it is almost completely dry all the time, which makes it hard to eat and sleep, and there are tiny bumps all over my cheeks and gums, which feel gross. I have poor circulation and swelling in my legs, especially my left leg. This is probably because the blood clots that I had at the beginning of all this were in my left calf and have left the veins and arteries a little worse for wear. The toes on my left foot are numb. My vision frequently blurs. And, I’m still mostly hairless which is really starting to annoy me; although some peach fuzz is starting to sprout about the chin.

Considering how bad I felt immediately after the transplant, all that I described above is almost irrelevant. I actually feel pretty darn good and I am very thankful for how well I am progressing and all of the support I am receiving. My days are always light and relaxing. I mostly divide my time between reading (my reading list is found at the bottom of this blog), cruising the Internet, taking naps, sitting by the pool, and watching the boob tube. I try to take long walks every other day or so. Fortunately I live out in the country so when I walk I get to experience the beauty of nature. I get to see wildflowers and woods and ponds and creeks and cows and horses and sheep and goats and all kinds of birds (if I’m lucky I’ll get to see majestic cranes either walking the creeks or flying above the tree line) and friendly folks along the way. My dog Shikibu, the best and cutest dog in the world, often joins me on my walks and she always makes them even more interesting and enjoyable. But probably the best part of my day is when, after the sun begins to set and the temperature cools down, my wife and I hop in the hot tub and spend quality time soaking, reflecting on our good fortune, and planning for our long future together.

Test Results

Email from Kurt’s doctor:

The bone marrow biopsy report is not back. However, all the news thus far is excellent. His bone marrow flow cytometry shows no leukemia cells. The most sensitive test for detecting leukemia is the BCR-ABL PCR. This result came back as undetectable (meaning no leukemia). These are excellent results.

Sincerely,

[Kurt’s Doctor]

UPDATE: In a subsequent email, Kurt’s doctor said that the preliminary result from the bone marrow biopsy also shows no leukemia. The final report won’t be available until next week but everything is looking good. Additionally, the BCR-ABL PCR test is more authoritative than the bone marrow biopsy.

One Night

dilantin-induced hallucinations
busulfan and fludarabine-laced dreams
black outs and cold sweats

It’s 2:00 a.m. There is a blue glow to the room as I lie on my back trying to sleep. I’ve been trying to sleep for a long time. My toes burn and my back is hot. My skin itches. The black motion of sleep hovers right above my eyes, slowly rolling back and forth, and up and down, and in and out, like lava in a lonely lamp. I pray for it to come down and put me under. Occasionally I feel its numbing tingles of unconsciousness seductively pulling me down. But just when I think to myself that I’m finally falling asleep, it pulls back and continues its slow dance right beyond my reach. After each tease, I am more awake than before. I want to change positions but I know that if I do the black motion of sleep will disappear completely. I don’t want to lose it so I will not move. No matter how hot it gets between the mattress and the back of my body, I will not move. No matter how much my skin itches, I will not move. My hand pulls to try to scratch at the itching, but I will not let it go. As I continue to watch the black motion of sleep and feel myself not moving, my head becomes heavy, much too heavy for the pillow. It is so heavy I no longer have the strength to hold it atop of the pillow and it begins to sink as if it were lying in quicksand. I must finally be sleeping I think and I feel relieved. But the black motion of sleep is still there, hovering out of reach. I am still awake. My toes still burn. My back is sweating. My body itches more than ever. I am still awake and yet my head continues to slowly sink within the pillow. My ears disappear and all of the low, humming hospital sounds are muffled out. I only hear my nervous breathing. My head continues to sink and I can’t lift it up to stop it. Soon my mouth will go under, then my nose, and then I won’t be able to breath. I know I have to force myself to lift my head out of the pillow before I suffocate but I can’t move. I try with all my might but it just continues to sink. If I can move something, open an eye, wiggle a toe, cough, anything, my head will stop sinking and I will be okay. But I can’t. I can’t move anything. Nothing moves. I am in a moving car, standing where front seat passengers normally sit. My head, upper body, and most of my legs extend through the top of the car. I look down to see who is driving but it is too far down and all I see is a shadowed figure behind the wheel. The night wind is cold on my face and I enjoy the sensation of standing while the car moves. I feel as if I am flying. We are on a familiar road, Campbell Road, and I see that the cows are not in the field. Their barn is dark. There are so many stars out the night sky appears as bright streams of light. I’ve driven down this road many times. It’s the way home. The Susquehanna Trail is up ahead and I instinctively feel my body trying to slow itself down in preparation for the stop. I see the stop sign in the distance but it doesn’t seem as if we are slowing down as we should. I try to communicate with the driver but the wind will not let any sound escape from my mouth. I try to squeeze myself down into the car but I am too big. The car begins drifting to the right. The right side tires bounce off the road and onto the shoulder. Gravel kicks up. Up ahead, parked on the side of the road, is a State Highway Patrol car. We head directly for it. I panic. I bend over at the waist and lean over the outside of the front window to look into the car so I can see who is driving. My wife is asleep behind the wheel. I stand up to cover my face from the crash but at the last second our car swerves away from the cruiser and makes the left turn without stopping, barely missing the oncoming cars. I scream. I look back, expecting to see the flashing lights of the cruiser in pursuit of us but the car remains parked on the side of the road. We have a right turn coming up quickly but our car drifts across the center line into the path of another oncoming car. The car swerves into the other lane and misses us. We continue drifting more into the left lane until we are once again driving with half of the car on the shoulder. Cars continue to miss us. We drift all the way off the road and into the grass and head directly toward a large tree. I hold my hands out in front of me to try to prevent the crash. As the front of the car crashes into the trunk of the tree, branches whip my face and my fingers grab for them. It’s 3:00 a.m. I have to pee. I lift my head and I feel woozy but I have to pee so I rush out of bed. Standing, I really feel woozy, drugged up even. I unplug my IV pump and wheel it with me. The bathroom lights hurt my eyes. My vision is blurry. I reach down for my urine decanter and the blood rushes to my head. I stand up feeling dizzy and unstable. I begin filling the decanter. The dizziness doesn’t go away and my legs begin to feel weak. My mouth begins to water. I feel a tingling sensation moving up my body and tiny black spots begin appearing before my eyes. I’m going to black out. I have to get back to bed before I do. But I haven’t finished peeing. I feel bile rising up my throat. The black spots get bigger. I can’t pass out yet. If I fall and hurt myself it may jeopardize my transplant. I feel sick. I have to puke. I finish going to the bathroom. I fumble with the lid as I try to snap the decanter shut. The floor spins as I bend down toward it. I set the decanter down and stand up. My head spins and I totally black out. Blind, I grab for my IV pump for stability. I push the pump in front of me for protection as I head back to bed. I make it. I sit down and feel my body rushing in every different direction. I see nothing but complete, pulsing black. It’s hard to breathe but I force deep breaths. Cold sweat emerges from every pour of my body. The cool dampness is relieving and calming. My stomach settles. I lie back down in the bed and watch the black spots slowly disappear as the blue glow of the room returns.

Feeling Pretty Darn Good!

It seems the better I feel the harder it is to keep folks updated on how I’m doing. Now that I am feeling better I have more options to do other things other than to sit and think about how bad I feel. Now, mostly I sit around and read and write and take walks with the wife and eat all of the delicious, healthy, cancer destroying foods that she prepares for me. So that’s why I haven’t been blogging or tweeting as much. Besides, it’s redundant for me to keep posting: feeling good again today day after day. But since I’ve stopped getting the regular doses of chemo and I’ve been taken off of most of my meds, that’s exactly how I feel. In fact, I feel better than I have in a long time, even since before my diagnosis.

Yesterday I met with my longitudinal doctor, that is, the doctor who has been my consultant and adviser since I was first diagnosed and who will be with me until the end. I have been seen by a boatload of other doctors for a boatload of different reasons, but it is my longitudinal doctor who I depend on most. I met with him and his boss. The purpose of this visit was merely a formality to give me one last checkup and their final diagnosis and authorization for me to proceed with my transplant. Everything is good. My counts are perfect and based upon all the tests I’ve had…spinal taps and bone marrow biopsies…the amount of cancer in my body is less than 0.04% or something like that. Pretty good, indeed.

I have only one more consult with a doctor between now and when I get admitted back into the hospital on 3/23/10. The consult is for the heart and as far as I’m concerned its just a waste of time…an evil plot to make sure I don’t stay away from the hospital too long.

Like I said, on the 23rd, a week before my transplant, I get re-admitted to the hospital so I can begin getting juiced up with some new kind of chemo. This kind will completely kill my bone marrow in preparation for the transplant. I’m definitely not looking forward to the chemo crud again, but it will mean I am one step closer to getting to the transplant and beyond. Again…pretty good, indeed.

So, as far as my blogging and tweeting go, no news is good news. I reckon once I get juiced up again I’ll be back to complaining on a regular basis as to how bad I feel. Misery loves company.

My Donor and Me

So, in a little over a month I am scheduled to have my bone marrow transplanted. It sounds daunting but according to my nurse practitioner it will be rather anti-climactic. Apparently, I will receive the bone marrow harvested from my donor in the same manner I would receive a blood transfusion: hang the bags, hook them up to the pump, plug the line out of the pump into my Hickman Line, and then lie back and relax. I expect it might not be quite as easy to relax during the transplant as a typical transfusion but still, my job during this transaction between my donor and me is relatively easy. My donor, on the other hand, has a much more difficult task.

It amazes me that there is someone out there somewhere in the world who is not just a perfect match for me, but who is also willing to follow through with the donation. I have no idea where my donor lives or how far he or she has to travel for the procedure–he or she could live halfway around the world for all I know. Fortunately for the both of us, my hospital will cover the travel expenses and my insurance will cover the costs of the medical procedures; but still, what a disruption to life he or she is willing to make on my behalf, especially since my donor knows nothing about me, other than my life depends on his or her marrow. Likewise, I know nothing about my donor, other than he or she is truly generous and caring.

I am told that a year or so after my procedure I will be allowed to make contact with my donor, provided my donor wants to make contact with me. I will have to make that decision when the time comes. Right now I appreciate the anonymity of the process. It enables me to focus on preparing myself prior to the procedure and healing myself afterward without having to feel obligated to establishing and maintaining a relationship with my donor at the same time. Even to me this seems completely selfish, but it is how I feel.

Besides, how does one thank someone for such grand generosity anyway? Right now the only way I can think of is by simply saying thank you and trying to live the best life after the transplant as possible. We will have to wait and see if I feel differently a year from now.

Bone Marrow Transplant Schedule

Wednesday 2/24/10
@7:30am-Registration on the 1st floor of the Weinberg Building
a. Diagnostic lab studies.
b. @8:30am-Bone marrow aspirate and biopsy. Located on the 2nd floor of Weinberg in the infusion area.
c. Meet with R.N. at 9:30am. Located on the 2nd floor of the Weinberg Building.
d. Ct scans of the chest and sinus at 10:10am. Located on the 2nd floor of the Weinberg Building.
e. Chest x-ray at 11am. Located on the 2nd floor of the Weinberg Building.
f. @1pm-Spinal tap with IT chemo. Located on the 2nd floor of the Weinberg Building in the infusion area.

Thursday 2/25/10
a. Pulmonary function studies at 8am. Located on the 7th floor of the Outpatient Center. Please arrive by 7:30am to register.
b. EKG. Located on the 1st floor of the Outpatient Center in Express Testing. Register on the 1st floor of the Outpatient Center.

@12pm-Registration on the 1st floor of the Weinberg Building
c. @12:30pm-History and physical exam with CRNP.

Friday 2/26/10
a. Heart scan at 7:30am. Located in the Nelson basement in Nuclear Medicine. Please arrive by 7am.

Thursday 3/11/10
@7:30am-Register on the 1st floor of the Weinberg Building
a. @8am-Bone Marrow Education Class. Located on the 1st floor of the Weinberg Building in the Patient and Family Services Suite, suite 1210.
b. Meet with Dr. for a brief consultation at 9:30am.

Monday 3/22/10
@12:30pm-Register on the 1st floor of the Weinberg Building then go to IPOP-Located on the 5th floor of the Weinberg Building
Take the elevator to the 5th floor and make a right. Go through the door and check in with the receptionist.
a. Registration
b. Diagnostic lab studies
c. Meet with Dr. to sign consents at 1pm.
d. Meet with a nurse for an ideal body weight.
e. Meet with admitting to do your paperwork for admission on 3/24/10. Located on the 1st floor of the Weinberg Building. You must keep this appointment.

Wednesday 3/24/10
@12pm-Admit to start chemotherapy. Do not wait for a call to come in. Report to the nurse’s station on 5B.

Wednesday 3/31/10
Bone Marrow Transplantation

The Registry Works!

My wife ran into my doctor this morning while walking about the hospital. After exchanging pleasantries and having a discussion about setting up an appointment for me to meet the new head doctor of oncology, my wife asked my doctor what he thought about the possibilities of the match for my bone marrow transplant.

The doctor said the match is good news, of course, and then he went on to explain that out of the initial eight that were targeted from the registry for additional screening, there were actually two exact matches: the one MUD (Matched Unrelated Donor) that has us all excited, and one other. Unfortunately though, the one other match cannot be used. It cannot be used because the match is me.

The National Bone Marrow Registry and screening process really works. I do not remember when I registered but after all of these years it was still able to find me as a match for myself. Finding out I was a match for myself makes me both happy and a little sad. It makes me happy to know that the system works. No matter how long someone sits around in the system waiting, if their type is a match, they will be found. But it makes me sad in the sense that after all these years I was never found as a match for someone in need. And now, even if I come up as a match, I never can be of help, not even to myself.

Visit www.marrow.org for more information about the Bone Marrow Donor program.

Donor Update – 2/2/10

Email excerpt from my Bone Marrow Donor Coordinator:

Hello,
I emailed the information below to [Kurt’s doctors]; I am still hoping to find another match– but as of date we only have one.

Kurt Brindley MR # X-XXX-XX-XX:
has 2 haplo* sisters, 1 disparate** sister, 2 MUD [Matched Unrelated Donors] Mis- Matches and 1 MUD Match.

Sincerely,
[Bone Marrow Donor Coordinator]

– – – – – – – – – –

* When trying to match a sibling, a haplo match essentially means that she has only one of the tissue types contributed by either the mother or father. A haplo match is a half-match, so to speak, and may be used in a transplant if a full match cannot be found.

** When trying to match a sibling, a disparate match has neither of the tissue types contributed by either the mother or father. A disparate match cannot be used for a transplant.

The underlines for emphasis are mine.

Visit www.marrow.org for more information about the Bone Marrow Donor program.

Finding Out – Part II

Most of us are probably familiar with the television drama scene where the doctor, prim in his white lab coat, sits at his desk in his office with a husband and wife sitting across from him. The couple seems apprehensive, knowing that their doctor called them in to tell them something very serious. And then doctor gently breaks the news to the couple that the husband has cancer. When the couple hears the news, the wife softly sobs into her husband’s shoulder as the husband resolutely asks the doctor both what are his chances and what are his options. You can imagine how the rest of the story goes. It is a typical Marcus Welby M. D. scene. However, life is not a television show, at least it isn’t for me.

The Johns Hopkins University Hospital is located on the east side of Baltimore and the main hospital is very much an inner city hospital. So, after circling around the block several times in an effort to find a place to park, and after walking what seemed at least a mile in the rain (Can you feel the melodrama starting to seep in?), I entered the hospital way out of my element and more than a little upset about having a leg full of blood clots.

Languages other than English were being spoken. Even when English was being spoken, it was often as a second language. Other than the fact that I felt like I had entered a United Nations sponsored medical bazaar, the emergency room experience started out like most emergency room experiences: long periods of waiting while sitting in uncomfortable chairs in a crowded room full of loud conversations. Eventually, I made my way through the process: check in; vital signs taken and blood drawn; move to the next waiting room to be screened; screened; move to another waiting room to wait to be seen by the on duty physician; move to the curtain-enclosed room to meet with the on duty physician; more waiting.

By this time my wife had arrived. We both waited in the small room–a large nook with a hospital bed is a better description–behind a privacy curtain. The emergency room was busy and we heard all of its busy noises, including the on duty drunk moaning and complaining about something that I could not understand. Every time he would moan, someone would holler at him to hurry up and go to sleep. A nurse entered and quizzed me with a slew of questions while she poked and prodded with her fingers and hands and listened intently with her stethoscope. With the promise that the doctor would be seeing us soon, the nurse left my wife and me to continue our pondering as to why in the heck I had a leg full of blood clots.

Donor Update – 1/20/10

Email excerpt from my Bone Marrow Donor Coordinator:

When dealing with national and international registries it takes a long time compared to family members who arrive ASAP.

World Wide I only found 8 potential matches; of samples we requested we only received 2 of them this week; they are in typing now. I do not know when the others will arrive or if they are available; we have not heard anything from the other 6.

In a perfect world I will have 3 matches but we will not know until the Class II and High Resolution typing is complete if they match. If I find 3 matches I will put them on hold.

Finding Out – Part I

Finding Out – Part I

Of course once I was diagnosed with leukemia I immediately understood why I had become so tired so often beginning sometime around the end of July 2009. Physically, the year started out great. I had ankle surgery in 2007 for a dislocated tendon on my left ankle so I had not really worked out since then. But at the beginning of 2009 my ankle felt pretty good and I began running and working out. I kept it up until mid-August when I had to stop because I just did not have the energy to work out any more. I assumed it was because of Lyme disease. I was infected with that garbage way back in 2005 and had been suffering from its symptoms–lethargy and achy joints–ever since. As a result, I was not too concerned about my health at that time.

It was not until mid-November when my body made some physical alterations that forced me to take note. I was out mowing the grass, typically a three-hour project, when suddenly all of my energy drained from me. I was only about an hour into the job but I had to stop. Football was on so it was not too hard to convince myself to take a break. I made it to the TV room, put on the game and kicked my feet up. Because I was so exhausted, I fell asleep almost immediately but was soon awaken by severe cramping in my left calf and foot. My feet and ankles occasionally cramp up when I sleep so, again, I did not think much about it, even though the cramps continued through most of the afternoon.

When I woke up the next day I had what I thought was a big charlie horse in my left calf. Also, my left ankle was swollen and sore. I wrapped them and off to work I went. This went on for a week when I went to the doctor’s for a check up. I still thought I was suffering from a muscle cramp so that was how I articulated the symptoms to my doctor. He checked out my leg and told me to come back in a week if the condition persisted. The condition persisted and by a week later, my entire calf and ankle had swollen to what seemed was double its size. Back to the doctor I went. My doctor was not available so I was seen by my wife’s doctor. By this time I knew I was not suffering from a muscle cramp. I thought that perhaps I got bitten by a bug or some other poisonous critter and that is what I told my wife’s doctor. She took one look at my leg and without hesitation told me that I was suffering from blood clots.

Blood clots!? What the–! What is a healthy, forty-four year-old guy like me doing with blood clots? I do not eat too much junk. I do not smoke. I drink too much wine and coffee perhaps, but is seems that they should thin my blood, right? And what the heck did I do all that working out practically all year for if I still ended up with blood clots? I did not have too much time to reflect in the doctor’s office because she immediately sent me off to the emergency room. On my drive over, I did reflect. More accurately, I stressed out on the fact that I may soon be on blood thinning medicine, perhaps even the same medicine that my father is on. I was still battling with my current state of affairs when I limped my way in to the emergency room.

Bloodwish

There has been much focus on finding a bone marrow donor match for me. It makes sense because the sole reason I am going through all of the nausea and discomfort of the chemotherapy treatment is to destroy my diseased and dysfunctional bone marrow and replace it with someone’s healthy bone marrow. I named my blog Marrowish because of this need–a wish for marrow–and to remind myself to live a marrowish life–living a full life, right down to the marrow.

It amazes me how, because of my need, so many of my friends and acquaintances have volunteered to donate their bone marrow, knowing that the odds are way against their marrow being a match for me. Some have even wanted to set up a bone marrow drive in my name. Amazing.

I registered for the national bone marrow registry a long time ago. In fact, I had forgotten about it until my leukemia diagnosis. I do not remember why I did it. As far as I know I have never known anyone with leukemia. In fact, I was not really too sure what leukemia really was when I was diagnosed with it. And still, after all these years on the list I was never called. I suspect most people on the registry never are. That being said, I still encourage as many people as possible to register. Not for me, but for those who do not yet know that they will become inflicted with the disease…especially the children.

But there is also another, more immediate need where your help will be put directly to good use: donating blood.

During my first phase of treatment the chemotherapy drove down not only my white blood cell count, it also drove down my red blood cell and my platelet counts. As a result, I regularly had to receive both red blood cell and platelet transfusions. I suspect the same will be true during the subsequent phases. Each time I had a transfusion, as I watched the nurse hang the bags of blood or platelets and hook their lines up to my catheter, I felt a little guilty and wished that I had donated more blood. I am pretty sure that I will never have an opportunity to donate blood again.

So, if you are looking to have an immediate impact on someone’s life, perhaps an injured service member, or an unfortunate commuter, or even a scared, young leukemia patient, please donate blood and donate it regularly. Many of you certainly already do. Thank you. For those who have not, please do. I guarantee that, even if you hate needles and get queasy from the thought of it, you will still feel good about it after you are done. It is a noble cause. In fact, I would not be able to survive without someone with O+ blood taking the time out of their busy schedule to donate their blood to me. There are many, many others who are in just as much need, if not more. And I pray it never happens, but you never ever know–some day you may be the one in need.

If you’ve ever donated blood before, or if you donate blood any time after reading this post, please leave me a comment to let me know so we both can feel good about it together.

Donor Update – 1/11/10

Email excerpt from my Bone Marrow Donor Coordinator:

I have found potential MUD [Matched Unrelated Donor] donors but I just requested the samples to be sent here for testing to see if they are fully matched. The samples are kept in the individual registry repository I do not have any planned arrival dates from the samples that are requested at this time. Once the sample arrives it can take 10-14 days before we know if it is a match.

The underlines for emphasis are mine. Updates will follow as they are received.

My Hickman Line

Johns Hopkins Instructions for taking care of a Hickman Line and a Heparin I.V. flush syringe.
I have an Hickman line inserted in my juggler vein to administer my chemotherapy as well as to draw blood for my many, many blood tests. It sounds rather creepy but it is better than getting an I.V. or vein sticks over and over again. Either a nurse at the hospital or my nurse at home (my wife) flushes the lines daily with Heparin I.V. flush syringes.

Because the line is sewn directly into a vein, risk of infection is always a concern. Consequently, the catheter is always covered by a Tegaderm dressing. The dressing provides for a snug fit over the site and enables you to see through the dressing to check the site for infection. It is changed weekly and the procedure is quite a mini production. Masks and gloves are worn and there is even another set of sanitized gloves that must be put on after the old dressing is removed. My wife has been trained to change the dressing and we have kits at home with all the items needed. To take a shower I have to cover the dressing with yet another dressing, called an AquaGuard. The AquaGuard is supposed to prevent the site from getting wet. Don’t tell my nurses but the site still usually gets wet.

My Hickman Line covered by white Tegaderm Dressing and clear AquaGuard dressing.

If you have not figured it out by now, we cancer patients are very needy and, unfortunately, require much care and attention. Often, it seems that I have it pretty easy compared to all of the work that others, especially my wife, have to do on my behalf.

The following is an explanation of Hickman Lines from Wikipedia:

“A Hickman line is an intravenous catheter most often used for the administration of chemotherapy or other medications, as well as for the withdrawal of blood for analysis. Some types of Hickman lines are used mainly for the purpose of apheresis or dialysis. Hickman lines may remain in place for extended periods and are used when long-term intravenous access is needed.

The insertion of a Hickman line is usually done under sedation or a general anesthetic by a radiologist or surgeon. It involves two incisions, one at the jugular vein or another nearby vein or groove, and one on the chest wall. At the former incision site (known as the “entrance” site), a tunnel is created from there through to the latter incision site (known as the “exit” site), and the catheter is pushed through this tunnel until it “exits” the latter incision site.” [Read more]

My Doctor’s Explanation

Question: “Why was my diagnosis changed to Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis?”

Doctor’s response: Let’s focus on the bilineage part first. White blood cells can be of myeloid or lymphoid origin. When [Kurt] came to the hospital he had a high white blood cell count with mostly lymphoid cells. The high white count favored an acute leukemia. The first and most likely diagnosis is acute lymphoblastic leukemia (ALL). We then performed a bone marrow biopsy and flow cytometry that showed that 77% of his bone marrow cells were of lymphoid origin and that 1-2% that appeared to be of myeloid origin. This meant there were two lineages – lymphoid and myeloid, although the myeloid population was very tiny. In these cases, we design a therapy that targets both lineages. For lymphoid leukemias we treat with a lymphoid induction chemotherapy regimen, which in your husband’s case was E2993. For myeloid leukemias, we can treat with myeloid induction chemotherapy or for patients that are Philadelphia chromosome positive, we can treat with a tyrosine kinase inhibitor such as Imatinib (also known as Gleevac) or Desatinib (also known as Sprycel). Because [Kurt] was Philadelphia chromosome positive, the chemotherapy plan we designed for [him] was E2993 induction with Desatinib. I want to emphasize that if [Kurt] had simply Philadelphia chromosome positive ALL (in other words no myeloid cells) we would still use the exact same regimen of E2993 induction with Desatinib.

Now let me explain in more detail the diagnosis of chronic myelogenous leukemia (CML) in blast crisis. The pathologists emphasized to us that this was a challenging case. When the pathologists first gave us their analysis of the bone marrow, they also saw basophils and increased myeloid growth which suggested CML in blast crisis. CML is at first a slow growing disease but goes through 3 phases: chronic (slow), accelerated (medium), and blast phase (fast). Some people with CML to get from chronic phase to blast phase; others and we suspect, for [Kurt], this shift from slow to fast occurred over months at most. In blast phase (the fast growing phase), CML can make either or both myeloid or lymphoid blasts which is consistent with what we saw for [Kurt]. The definitive tests to prove CML are molecular tests and cytogenetic test in which we analyze [his] chromosomes. These tests confirmed the presence of the Philadelphia chromosome and also that the size of the BCR-Abl product was the p210 product. You can read more about this, but this p210 product is found in CML not ALL.

I want to emphasize, however, that we were thinking about both diagnoses from the start of [Kurt’s] care and that for both diagnoses, our treatment plan was exactly the same. Even though the p210 test was pending when we started treatment, we were confident that the chemotherapy plan we outlined would be the best treatment for both diagnoses. Our goal is to cure [Kurt], and the current plan of E2993/desatinib and transplantation is the best strategy for defeating his leukemia.

My Doctor's Explanation

Question: “Why was my diagnosis changed to Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis?”

Doctor’s response: Let’s focus on the bilineage part first. White blood cells can be of myeloid or lymphoid origin. When [Kurt] came to the hospital he had a high white blood cell count with mostly lymphoid cells. The high white count favored an acute leukemia. The first and most likely diagnosis is acute lymphoblastic leukemia (ALL). We then performed a bone marrow biopsy and flow cytometry that showed that 77% of his bone marrow cells were of lymphoid origin and that 1-2% that appeared to be of myeloid origin. This meant there were two lineages – lymphoid and myeloid, although the myeloid population was very tiny. In these cases, we design a therapy that targets both lineages. For lymphoid leukemias we treat with a lymphoid induction chemotherapy regimen, which in your husband’s case was E2993. For myeloid leukemias, we can treat with myeloid induction chemotherapy or for patients that are Philadelphia chromosome positive, we can treat with a tyrosine kinase inhibitor such as Imatinib (also known as Gleevac) or Desatinib (also known as Sprycel). Because [Kurt] was Philadelphia chromosome positive, the chemotherapy plan we designed for [him] was E2993 induction with Desatinib. I want to emphasize that if [Kurt] had simply Philadelphia chromosome positive ALL (in other words no myeloid cells) we would still use the exact same regimen of E2993 induction with Desatinib.

Now let me explain in more detail the diagnosis of chronic myelogenous leukemia (CML) in blast crisis. The pathologists emphasized to us that this was a challenging case. When the pathologists first gave us their analysis of the bone marrow, they also saw basophils and increased myeloid growth which suggested CML in blast crisis. CML is at first a slow growing disease but goes through 3 phases: chronic (slow), accelerated (medium), and blast phase (fast). Some people with CML to get from chronic phase to blast phase; others and we suspect, for [Kurt], this shift from slow to fast occurred over months at most. In blast phase (the fast growing phase), CML can make either or both myeloid or lymphoid blasts which is consistent with what we saw for [Kurt]. The definitive tests to prove CML are molecular tests and cytogenetic test in which we analyze [his] chromosomes. These tests confirmed the presence of the Philadelphia chromosome and also that the size of the BCR-Abl product was the p210 product. You can read more about this, but this p210 product is found in CML not ALL.

I want to emphasize, however, that we were thinking about both diagnoses from the start of [Kurt’s] care and that for both diagnoses, our treatment plan was exactly the same. Even though the p210 test was pending when we started treatment, we were confident that the chemotherapy plan we outlined would be the best treatment for both diagnoses. Our goal is to cure [Kurt], and the current plan of E2993/desatinib and transplantation is the best strategy for defeating his leukemia.

It’s Not Lymphoblastic!

Today, during a visit with my doctor to discuss Phase Two of my treatment, my doctor threw me (as well as my wife and daughter who were with me for the visit) for a serious loop. He started off immediately by explaining that after further analysis of all of my tests, I now have, and always have had, Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis instead of Acute Lymphoblastic Leukemia (ALL), which I was my original diagnosis. I am still stuck with the Philadelphia Chromosome abnormality. That has not gone any where.

Nothing changes though, as far as my treatment goes. I will continue to take the drugs that I have been taking for Phase One of my treatment (I still need to list those on my Treatment page), and beginning Wednesday, January 13, 2010, I will begin taking about four more additional chemotherapy drugs to bring my counts back down. After my counts are brought back down again I will have another bone marrow biopsy. Oh yeah, I must not forget the fun of another four lumbar pulls (AKA, spinal taps) during the upcoming phase. Fun, indeed. Better yet, it’s a Blast Crisis!

So, in the end, nothing really changes but the name. There are consequences for the impact on my disability claims, though. I have already completed the paperwork and identified my disease as ALL. I guess there will be some backtracking to do there.

Thank You Cancer

Certainly, if it were my choice, I would not have chosen to have my body completely revolt on me and crank up my white blood cell count from somewhere around a normal of 4500 – 10,000 healthy cells to well over 90,000 cancerous cells. But since it was not my choice and since this disease was chosen for me, it must mean that there is a reason that I am the chosen one, right? Perhaps. Regardless of the why, ever since the moment I was told that I have leukemia I have been thinking hard as to how I can best take advantage of the disease so that I can learn from it and try to become a better person.

Before I was diagnosed with cancer, those closest to me often heard me say that people make it hard for me to like them. I was, and still am I guess, a rather cynical person. But now, I’m finding that people are going to make it hard for me not to like them. One of the first things that I have learned since my disease is how awesome and full of love some people are.

Most, hopefully, are loved by someone, whether it be it romantic, familial, or friendly love. For most of us, the love is always there in various degrees: we tend to feel it more when there is a reason–new relationship, new birth, the holidays, etc.–but we always know it’s there even if we’re not thinking about it. Mostly, I believe, we just expect love to be there, like air. I, personally, have never spent one minute of my life without being loved. Unfortunately, I never thought about it too much–I just took it for granted.

However, even though we are loved, it seems that most of us, unfortunately or fortunately depending on your perspective, go through life without receiving unbelievable, repeated selfless exuberant acts and testimonies of love unless, maybe, we are lying in a casket during our funeral memorial. I, far from lying in a casket, have seen these unbelievable, repeated selfless exuberant acts and testimonies of love by my family, friends, and acquaintances–too many to list here–and I am very thankful for them. I am also thankful to my cancer for giving cause for these acts and testimonies to be expressed.

I still have much to learn about the disease that chose me against my will–and I still have much to learn from it. But what I have already learned has changed my life, which makes me look forward to what I have yet to learn. And I am very thankful for that.