One year ago today…

I went to the doctor because I had:

– 103 degree fever that would not go away
– I was out of breath if I walked up or down half a flight of stairs
– I could hear my heartbeat when I walked
– I had a rash through my mid-section

You all know the rest of the story. A year ago today, I was diagnosed with Acute Promyeloctic Leukemia. So far, this April Fool’s Day is much, much better!

Complete Blood Counts

I have been maintaining good counts for a while now. I am really happy about that. Unfortunately the maintenance medication still has it’s rough spots. The weekly Methatrexiate shot gives me a 36 hour headache and the daily Mercaptopurine still gives me the occasional mouth sore. Last week was filled with both headache and mouth sores. This week, much better. This week’s counts:

White Blood Cells: 4.7
Hemoglobin: 15.3
Platelets: 287,000
Neutrophils: 2,900

Last week:

White Blood Cells: 5.8
Hemoglobin: 15.0
Platelets: 267,000
Neutrophils: 3,700

I wonder about the fluctuations. I may have to read up on that sometime. Nah. I’ll just ask my Oncologist/Hematologist. You know, I don’t know anyone else who openly shares their blood counts with the world. Makes me pretty darn personable, don’t you think???

Good and Ouch!!!

Wow my counts continue to climb. Amazing:

White Blood Cells: 6.0!!!
Hemoglobin: 16.2!!!
Platelets: 278,000
Neutrophils: 3,800!!!

However, while today’s bone marrow aspirate was not the most painful (the first one was the worst), it was up there. For those of you who have not had a bone marrow aspirate, the pain is two-fold and works like this: 1) the initial puncture – when the needle is pushed into the pelvis; they basically “hammer” it in, it takes a bit and it hurts, but the pain stays in that area 2) when the marrow is drawn into the syringe, it creates a vacuum, this is quick, but it creates an unbelievable flash or jolt of pain, I usually feel this through every single bone in my body..toes to fingers to skull. This time the first part was rough, I should have a pretty good bruise. The second part was not as bad as normal, i.e. I did not feel it through my entire body.

Ah well that’s five of those since April 1, 2005. No more until late April, 2006 :/

No 5

No, not Chanel.

In fact, other than the number five, my fifth bone marrow aspirate will probably bear no resemblance to the classic parfum.

Yes it is that time again. At this point I do not worry about going through the procedure. I just want the results.

Thank You 2005

“It was the best of times, it was the worst of times.”

The opening sentence of A Tale of Two Cities, by Charles Dickens, referring to the time of the French Revolution.

And that’s how it has been this year, my old life was taken away from me on April 1st. Slowly, I have been building a new one.

I have been thinking about what I would say in this post for about two months. In my mind the contents of it have been changing as I reflect. Mostly, it is because the dramatic events in my life have not concluded. I was being completely sincere when I choose to title this post “Thank You 2005”. I have learned a lot this year. Quite possibly more so than any other year of my life, I will detail that further in the post. Rest assured that does not mean I liked what happened to me this year. I could have just as easily called this post “**** You 2005”. But to do so would indicate I missed the point of the valuable lessons that I needed to learn this year.

Without further adieu, let’s talk about the big stuff that happened to me this year. On March 21st my wife told me she was leaving me. On April 1st I was diagnosed with Acute Promyelocytic Leukemia (APL). So I am going to reflect on divorce, cancer, dealing with them together and starting a new life.

Divorce
I am still sad about this. Through my marriage, I heard some grumblings, but I did not “hear” them. Okay more to the point, I did not hear her. My wife’s leaving came as a surprise to me. Now some nine months later, I can tell you that when I look back, I see there were some things missing that I would like to be in a marriage. I think we both played our parts and worked our way into a vicious cycle. I certainly would agree that I wanted things to be different but this is not the method of resolution I would have chose. Then what do I know? This may be best after all.

I have not been around to many divorces so my judgment of my own divorce is limited. I think this divorce has gone smoothly, yet slowly. That is not to say it has been easy or leisurely. It hasn’t. Divorce enjoys its reputation as being a negative thing to go through for good reason. It is very close to being done. That will be nice for all concerned. Everything is pretty much split up now and setup how it will be when the divorce is final. Still just having that done and behind you, should be a good thing.

Cancer
Here is what I think happened. I was trying to do too much. I was not living in the present. It was going to be better when? Meaning I was always looking ahead. At the next house. The next vacation. The next child. I was out there on my own building some vision of my ideal life and family. I shared some of these dreams and visions with my wife but I do not think she was out there living in the future with me. Anyways I do not think I was enjoying the moment or paying attention to the here and now.

I think I compromised my immune system, and in turn compromised my endocrine system and then started producing leukemic blast cells. My medical knowledge here is simplistic at best. It is just a theory I have about how I got leukemia in the first place.

The initial 30 days in the hospital was wild. Easily it was the most dynamic experience in my life. At first it was shocking. I could not believe what I was being diagnosed with. I also could not believe the treatment. Meaning the medical treatment. The personal treatment by the doctors, nurses, PCTs, administration and my family and friends was the best. The medical treat was great too but frequently scary and extreme. My first day was the worst. It started at my regular doctor’s office with a blood test, then him sending me to the hospital. The first thing was a bone marrow biopsy. That biopsy was the most painful one I have had and the only one in which I took morphine. Then I was told of my diagnosis. And what they were going to do with me, what my chances were (very good). Then they took my blood about 35 more times (literally, not exaggerating). Finally I got something to make me feel better: a ton of other’s people’s blood (mine wasn’t worth a crap). Then I got some chest x-rays and scans of my head. An April Fool’s Day I will not soon forget!

The remaining 29 days were no cake walk. I was scared, frequently. The first infusion and really the first round of chemotherapy was surreal. The administering nurses had to gown up and prepare to give it to me. I just remember thinking “here the nurse is in a hazmat uniform to handle this drug and here I am having it poured into my heart (literally via my picc line)”. The drug sheets offered no comfort. The first round of chemo was impending doom. I waited to vomit, for my hair to fall out, mouth sores, skin peeling, any of the horrid side-effects I had read of. And really I just waited. Then it happened. Slowly I got mouth sores, I felt fatigued but not tired. Nothing tasted good. In a few days I also reacted to all the antibiotics I was on. My mouth was full of sores. I couldn’t eat. My butt was sore from the C-Diff I had from the antibiotics. I was extremely miserable on both ends for days. That was the only time I took pain medication. I took codeine three times and loritab once. Then came the fever. We chased an infection for days. I had an infected zit on my neck. I had it surgically removed. I remember being told how this would be handled. I was shocked. I was scared (again). Because it was on my neck I was going to the Operating Room and being put under and put on a ventilator. All so they could an incision and drainage (I&D). Crazy. After round one my blood counts did not bounce right back. More blood, other people’s blood. One day had me getting a large number of transfusions. That night went on forever, the order for blood took a long time, the nurse could not get the Doctor’s order’s right, etc. It took some 16 hours to get all my transfusions that day. At the end of my stay I had about three blood clots in my arms. I was weak on my feet. I had lost 20 pounds and my hair. Resting my arms with their blood clots was an odd thing. I had to get Lovenox shots twice a day, and sleep on my back with both arms propped up on three pillows each.

After the initial hospital stay was three more rounds of chemotherapy. Mostly as an outpatient, but round three saw me back in the hospital for four days. Chemotherapy sucks. I do not know what zombies feel like, but I would imagine it is akin to being on chemotherapy.

Most of this is detailed in this year’s posts. The good news is by October 2005 my oncologist declared me 100% in remission (hematologically and molecularly).

The plan now is maintenance until August 2007. If am still in remission by August 2010 I will be considered “cured”.

Compound Problems
The uniqueness of my situation is not lost on me. It never was. I have not met another person who had to go through a divorce and cancer treatment at the same time. That is not to say that I am special or unique. I am not, just my circumstances were. Other people have faced worse dilemmas and survived larger tragedies. When I was in hospital and enduring a good deal of pain, bewilderment and fear I would frequently think of soldiers. I do not have military experience. I cannot imagine the moral conflicts one might get into when duty, self preservation, civilian life and being a protagonist collide. While I do not believe in all of the reasons that the US Armed Forces are in Afghanistan and Iraq, those US Troops have all my admiration and sympathy. While it may have been an ignorant and selfish exercise, somehow thinking of the daily life of a combat soldier made my problems seem small and I was grateful for what I did have: faith in my God and the love and support of family and friends. I would imagine that faith in God and the love and support of family and friends is frequently what carries a soldier through in their darkest hours. However, I was not miles from my family and friends, they were frequently right there, by my side. But I digress. I have talked about my plight so many times. When I tell people about what I have been through I get two basic reactions: 1. “I can’t imagine.” 2. “How are you doing it?”

I could not imagine either. If someone told me they were going through two really big ugly things at once I would not know what to say either. Well, now I would. I have an experience to relate to them. What do you say? You could say “Wow. I am so sorry.” Which unless you are responsible, is not necessary. You could say something corny albeit probably true like, “God must really love you and have confidence in your strength.” But be careful with that one. Sometimes people are not ready to hear stuff like “pain is the touchstone of spiritual growth”. The best things I heard were things like “You are in my thoughts and/or prayers.” Or “Let me know if there is anything I can do.” Those are what I would tell someone in my situation. And if pertinent, tell them what happened to me and what I did.

How did I do it? Really I have not done it. This is life. Life is linear; it does not happen all at once. I woke up and went through it one day at a time. Some days I was graceful, and some days I kicked and screamed and whined about not getting what I wanted and that life was really, really unfair. Overall I can say that accepting my situation was and continues to be the path of least resistance. Still, there are times when I have to set my boundaries and fight for my rights. However, I don’t have to be a misanthrope about it; I can do that gracefully too. Like I said nothing is concluded, I am still working on it. And still trying to do these things better.

New Life
With each experience, my eyes open a little wider, I awaken a little more. Boy, I am really awake now! I have never felt so strong. I mean that in every possible way: physically, mentally and spiritually. I suppose I could be fearful about a lot of things: relapse, future relationships, finances, etc. Instead what has happened is that I have come to realize that people are strong. The human spirit is strong. I also realize that life is fleeting and short. We did not get to pick who, what, when, where, why and how we came into this world and we do not get to pick who, what, when, where, why and how we go out. So what? So, I am going to make good use of the time I do have.

So…thank you 2005, thank you for your lessons. Now get out of here. I am ready for 2006.

How You Doin’ ?

Wow. Per my CBC this week, I am a normal male. Check these counts out:

White Blood Cell Count: 5.1
Hemoglobin: 15.3 – Wow!!!
Platelets: 278,000
Neutrophils: 3600

I cannot remember ever having a 15+ hemoglobin. I am not anemic!

Here it is cold and flu season and I am walking around with a heck of an immune system! You know, this fall I have been pretty healthy. Usually when I go to Europe I get a cold at some point. Not this time. No way. Maybe it’s karma? Yeah, I think I have had enough illness for a while 🙂

It was the holidays last year when I started my health stuff. I had acid reflux and started chasing that right up until I was diagnosed with leukemia on April 1st. It is nice to be getting some time behind on all this.

Getting Better All the Time!

Wow!

Look at these counts:

White Blood Cells: 4.5
Hemoglobin: 14.9
Platelets: 243,000
Neutrophils: 2,800

The white blood cell count is the highest it has been in some time. The hemoglobin is the highest I can remember. The platelets and neutrophils are respectable.

This is all very good. Considering how much time I am going to spend on a plane to Copenhagen, I will need a good immune system sitting through all that recycled air. Yuck.

Four

Well I had my fourth bone marrow aspirate today. Not much fanfare anymore. I think I am getting used to it and my doctor is getting better at it. Don’t get me wrong, it is no cake walk. It is still an amazing jolt of pain. I am just not as impressed by it as I used to be.

Also found out that I will be on my maintenance plan until August 2007. And quarterly bone marrow aspirates until then too.

Haircut

I went and saw my hairstylist today. I got my haircut. I really didn’t “need” a haircut. It was was shaggy and I wanted it cleaned up. Good as excuse as any. I had not seen anyone at the salon since March of this year. I sure had a lot to catch them up on!!! The point is a haircut takes me futher away from chemotherapy. It was cool to get back to something I was used to doing every month 🙂

hair
Here is how it came out.

fighter
This is in the middle of chemotherapy. Totally bald.

before
This is two weeks before I was diagnosed.

Counts

The latest. Last week I saw my Oncologist/Hematologist. My mouth sores have not really impressed her. So we did not reduce the dosage of my maintenance medications. Just stay on a daily multi-vitamin with B6, zinc and folic acid. And well for this week no mouth sores. I also asked about the long term effect of these meds on my liver and heart. No risk to my heart. And she checks my liver via results from my CBCs. I will have to get more information on how that is done in my next visit. Overall my doctor’s take is she wants to cure me (five years in remission) rather than make me comfortable 😛 However, my white blood cell count last week was a little low, 3.5. She did say if it drops below that, then they will reduce the dosages. Temporarily.

Good news. Now my doctor considers me in 100% remission! She got all of the test results she wanted and they are all clean. Another bone marrow aspirate on October 26th. Sigh. This is getting all to routine.

Off to the Oncology office again today. CBC and Methotrexate shot.

I Don’t Like the Drugs (But the Drugs Like Me)

I have been on maintenance drugs now for a month and half. Last week I started noticing I was getting mouth sores, again. Yuck. I called the Oncology office and they suggested adding a daily multi-vitamin. I did and well the mouth sores seem to be going away. Good thing. I don?t think I can do mouth sores for two years. The drugs are cytotoxic so, I was also worried they might be affecting my blood counts too. Thankfully this week?s CBC showed all counts still look good.

FYI:

Cytotoxic – Toxic to cells, cell-toxic, cell-killing. Any agent or process that kills cells. Chemotherapy and radiotherapy are forms of cytotoxic therapy. They kill cells.

Definition from Medicine.Net.

Title of this post taken from Marilyn Manson. Though, I am pretty sure he was writing about a different experience than I am.

14!

My blood counts have been great. And I guess you might say still improving. Today I had a 14 on hemoglobin. Which put me in the normal range. Non-anemic!

Today was also an appointment with my Oncologist/Hematologist. Interesting note. She is not considering me 100% in remission. She wants another molecular test. The last one was clear for one cell in 20. The one she wants to have run is one cell in a million. Hopefully the test can be run using the marrow obtained in the last aspirate. If not, I’ll be getting my next bone marrow aspirate a little early.

I guess that is all okay with me. At this point I think the proof is in the blood counts. They are consistently good. And obviously in some areas, still improving. And if I have to get a bone marrow aspirate early? Pfft, whatever. I have already proved to myself, I can get through those.