cancer

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.

Donor Update – 1/11/10

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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

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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]

It’s Not Lymphoblastic!

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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

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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.

It’s Lymphoblastic!

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It’s hard for me to write under the best of conditions–I’m a pronounced procrastinator who always can rationalize away a reason to write. But now that I’m down with cancer, I have both the best opportunity to, as well as the best reason not to, write.

I have much to write about–anyone does, really. But in the short period of time since my diagnosis on November 30, 2009, with Acute Lymphoblastic Leukemia (ALL) and the Philadelphia Chromosome abnormality, I have accumulated many things in my mind that I would like to record for my own self-interest. For example, I would like to log down the emergency room scene when I was told about my disease, including the moaning drunk outside my pulled curtain (as cliche as it may sound), to capture what I remember and felt about that experience. I would also like to describe what it’s like to be stuck in a hospital bed in a room where everyone who enters has to wear a mask. It becomes rather surreal when I had multiple visitors sitting around me trying to communicate through their eyes. And of course I will want to try to explain how the treatment and various medications are affecting me physically and mentally. Yes, lots to discuss as long as I am unable to convince myself not to write.

But what I really want to acknowledge first and will discuss in my next post, what I want to make sure anyone who reads this understands, is that I very quickly have become truly thankful for my disease.