leukemia

Hair

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Warning: This is potentially a TMI post. Read at your own risk!

Kurt with hair
Kurt with hair
Before my cancer and all the chemo, I saw myself similar to how Ricky Bobby saw himself in the movie Talladega Nights: I’m just a big hairy American winning machine, you know. That was me. I was confident, happy, had a wonderful family, a great job, felt strong and in okay shape, and I had a thick mane of hair on my head and a decent coat of fur all over my body. I was no back shaver, mind you (not that there is anything wrong with those of my friends who feel the need to shave the back…you gotta do what you gotta do) but I definitely had some hair to be proud of. But all of that, especially the confidence, the being in shape, and the hair, changed after the chemo.

Now I know some of you are wondering—I know I was before I started getting the chemo, so I asked my nurse—does one lose ALL their hair from the chemo treatments? The answer I got was that it depends. It depends on the person, the type of chemo, and the amount of chemo received. I would just have to wait and see.

It turned out that during the first phase, things moved slowly hair loss-wise. It took several weeks before any hair on my head started falling out and a couple more weeks before my beard began thinning out. I never noticed the loss of any body hair. I will say, it was very unsettling when the hair on my head began falling out in earnest and I would wake up in the morning to see big piles of it all over my pillow and bed. Once that started happening, I went directly to the barber and had my head shaved.

Shaved head
Shaved head
It’s not as easy as you think to get your head shaved. When I went, my regular barber was crowded so, not wanting to have to sit around and explain to the regulars about my cancer, I went to another barber that I had only been to once before. It was empty so I went in. The barber was a female and after I sat down and explained that I wanted my head shaved, she almost seemed offended, but in a cheesy, middle-aged flirty kind of way. She gave me the third degree and wanted to know why I wanted my head shaved. Still in no mood to discuss my cancer, I just said something rather curt about me being sick of having such thick hair to mess with. She reluctantly began shaving it off, but as she did, she went on the whole time about how a guy should never shave off such a nice head of hair. (I have another story about my hair and my youngest son’s ill-fated attempt at trying to shave if off…but that’s for another time.)

I had a couple of weeks off between phase one and phase two treatments. During the time off, the hair on my head and face started growing back in rather quickly. But again, after a few weeks of the phase two chemo treatments, both head and facial hair began thinning out. Again, I did not notice the loss of any body hair. This time, because the hair on my head was so short, I was able to shave it off myself.

Before the transplant
Before the transplant
During the first two phases, while I did lose a lot of hair, I never lost all of it on either my head or face. But all that changed after I received the large doses of chemo in preparation for my bone marrow transplant. About two weeks after the treatment, hair everywhere began falling out. And by everywhere, I mean everywhere. After about a month, the only hair I had left on my body was my eyebrows and my eyelashes. My body was smooth as a newborn baby. I won’t go too much into details, but I will say, things feel a lot different without hair in the places where you’ve been used to having it. I was left feeling very incomplete and somewhat insecure. I didn’t like it at all.

But now, finally, it’s all coming back and I’m beginning to feel much more like my old self. And by old, I mean much older. As you can see, even though I looked older than my age before, this whole cancer ordeal has aged me even more. And even though I’ll still be completely gray on top, I’ll be glad to have it back and I promise not to complain when it once again gets too long and too thick and too hot on my head. And I won’t, in frustration, ask my son to shave it off (again, we’ll leave that story for another day).

Coming back!
Coming back!

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.

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.

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.

Finding Out – Part II

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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

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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

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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

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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.

Thank You Cancer

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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.