Kurt

He's tall, but he hopes to achieve more in life than just that.

Chemo

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Chemotherapy Nurse
Kurt's nurse suited up and prepared to administer his chemotherapy

It seems to me that the word “chemotherapy” is one of those rare words that can instantly conjure up fear and images of pain and suffering, similar to words like “Holocaust” and “September Eleventh.” Perhaps those comparisons are not exactly appropriate (and bordering on bad taste), but my point is, just hearing the word chemotherapy tends to scares us.

And for good reason, too. Chances are, we know someone close to us, maybe a loved one or a friend, who got cancer and who had to receive rounds of chemotherapy. And from them, we heard firsthand how tough it was on the body. We heard about the nausea and vomiting, we heard about how it attacks the intestinal tracks and causes mucositis, we heard about their inability to eat and the loss of weight, we heard about the lightheadedness and dizzy spells, and we heard about the hair loss.

But chances also are, even though we know the word and are familiar with all of the effects associated with it, we really don’t know what it is. Now, I’m not about to try to cover the many different forms of chemotherapy treatments that are available, you can do a quick search and find out all about them if you’re really interested, but I do think it’s interesting that one word can have such an impact on our collective psyche without us really knowing much about it.

One thing I can tell you about chemotherapy, the stuff is toxic. Take a look at the picture of my nurse at the top of this post. She has to take special precautions to ensure that she doesn’t come in contact with the chemotherapy. She has to wear a mask, a disposable suit that wraps around and completely covers her clothing, and special gloves that go over the standard gloves she wears. What you don’t see in the picture is that the nurses also have a special hat that has a clear guard to protect their neck and face. It looks similar to what a spot welder would wear. And then, after she is completely protected, she pumps that toxic junk right into me.

From my experience, it seems that whenever chemotherapy is discussed, we tend to focus on all the negativity associated with it–just like I’ve been doing in this post–and barely focus at all on its most important quality: CHEMOTHERAPY SAVES LIVES! It saved my life. And, like a miracle, it’s saving countless of other lives every single day. We all should give thanks to God for it.

My Cancer Class, 2011

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At the beginning of any new journey, maybe it’s starting with a new company, going back to college, or signing up for fitness classes at the local gym, it seems that you can easily identify those who are just starting out. Like you, they are the ones who are just learning the ropes of the new system. They don’t know exactly what to do, where to go, or how to get there. Like you, they just look new. Over time, whether intended or not, a bond will form between you and the group of new travelers and you will begin to identify yourselves as a sort of class. Maybe you will become friends with some of the people from your class or maybe you won’t, but the chances are you will always feel a special kinship with those who traveled on your journey with you.

My cancer journey was no different. Practically from the moment of my diagnosis, I began to notice others who had also just begun on their cancer journey. New cancer patients are especially easy to identify: they are the ones who have a constant stunned look of disbelief on their faces; they are the ones who are irritable, stressed, and anxious, not just from recently having learned about their disease, but mostly from the side effects of the steroids and other new drugs they had just started taking; and they are the ones who still have their hair.

After diagnosis, I was immediately admitted to the hospital for the first two weeks to begin my initial phase of chemotherapy and medications. From time to time I would see other new cancer patients as either I or they walked laps around the ward; or, I would see them pass by my door on their way to the little kitchenette for the always available ice cream or cup of noodles. Sometimes we would wave or nod our masked heads at each other. Oftentimes, we would just simply shuffle by each other without any acknowledgement.

After I was discharged from the cancer ward, I was admitted to the Inpatient/Outpatient Clinic. At IPOP, new cancer patients usually have appointments every day. Every day, my wife—my caregiver, my inspiration, and my guiding light—would pack me up and drive me to the hospital. The drive could take anywhere from 45 minutes to an hour and a half, depending on Baltimore traffic. When I got to the hospital, I would reluctantly don my mask, reluctantly disinfect my hands, reluctantly enter the clinic, sit down, pull my ball cap down tight over my freshly shaved head, and glumly wait to be called by the nurse. Meanwhile, my wife, always positive, always cheerful, would sign in for me in the registry, make herself a cup of coffee, grab a magazine, and then sit beside me and try to cheer me up. Other familiar masked faces would also be there waiting with their caregivers.

Soon my wife became friends with several of the other caregivers and, through her reports, I would be able to track the progress of the other cancer patients from my class. It helped me to hear about them from my wife. Knowing that others are on a similar journey as yours, that others are just as confused, just as sick, just as scared as you are, provides a certain level of comfort and a sort of release. I was able to let go many of my fears and better accept my condition because I learned that nothing that I was going through was unique just to me.

Unfortunately, there are many, too many, cancer patients in my class. And even though I was familiar with all of them and drew strength from their silent encouragement and solidarity, I only came to personally know a few of them by name. And of those, I only know the current fate of two, which is too bad because I often think about all of those faces who I had come to know so well and wonder how they are doing now. I try not to wonder who didn’t make it.

Next year my cancer class will graduate. Sometime next year, we will meet with our oncologist and we will be released from his or her care. Our disability insurance will stop and we will hesitantly and apprehensively return to work. After graduation, we will be free and encouraged to begin other new and exciting journeys, which is why graduations are often called commencement ceremonies. And when our new journeys do commence, we will look around and see that there are others who are also just starting the journey, too. And, while we will hope that we never have to travel down the same road as we did on the journey we just ended, we will know that we will all be better travelers for it.

Our Cancer Year

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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

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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

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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

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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!

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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

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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

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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!

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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.