Four years ago today I was diagnosed with APL.
Four month months later I was in remission.
28 months later I was done with chemotherapy and medication.
In 16 months the medical community and insurance companies will consider me “cured”.
The whole thing was an interesting experience. I know I changed significantly from the experience. Today I am relaxed and in the moment. I get more enjoyment out of the day to day than I can ever remember. Okay those summers in the 70’s being a free and curious kid roaming the neighborhood on a bicycle were pretty awesome.
Link to first post on my leukemia diagnosis.
Link to the leukemia category of my blog.
No Bone Marrow Biopsy for me until January 31, 2008. That’s great. I can deal with that amount of prep time.
What I learned yesterday. All my blood counts are awesome and I have lost 10 pounds since July. I am pretty sure I lost the weight at Burning Man and have seemingly kept it off since.
Yay on all of that.
Here’s the thing about not being on a weekly treatment schedule…I don’t know my schedule anymore. I have a full Doctor appointment tomorrow. However, I don’t know if that will include a bone marrow biopsy or not. Will see and report back later. Seems like it has been a while since I had to prep for that.
On Tuesday I went to the doctor. My visit consisted of a complete blood count, a consultation and getting glitter thrown on me by the nurses. No bone marrow aspiration, no methatexate. I am done.
For the next two years I get monthly complete blood counts and semi-annual bone marrow aspirations. That is it.
This was my mercaptopurine. Know what I did with it? I flushed it. Yep. All gone, no more.
All sorts of great news:
* My 12th bone marrow aspiration was negative.
* Last night I took the last dose of ATRA that I have been prescribed. Thank goodness. Don’t get me wrong I love ATRA. Surely it beats a bone marrow transfusion. In my case it was wearing me out in the 11th and 12th round.
* My white blood cell counts are still good. 6.2 this week.
It has been a while since my last update. Too long. A lot has happened since June 26th. On June 26th I had one of my full doctor appointments: complete blood count, doctor visit, bone marrow aspiration and methotrexate infusion. My typical visit every three months and this was going to be my 11th bone marrow aspiration. Well things were not so typical. First white blood cell count was low. It was 3.1. Normally it has been between 5 and 6. In fact it had not been that low since heavy chemotherapy in July 2005. At least I did have enough neutrophils, per the doctor. Turns out that there was more bad news for me. I am very near the end of my treatment so we discussed my medical care future. My doctor is referring me to an internist for general care. She also mentioned, as a cancer survivor, I am at higher risk for other cancers, I need to have my prostate checked in the next couple of years (oh joy, I am 38 years old) and due to the medications and chemotherapy I had to fight my leukemia, I was at higher risk for getting leukemia again. Yay. I knew all of this already. I do not like hearing it. I also do not think that statistics, etc. have anything to do with me. Just numbers, not fortune tellers. So onto the next part of the visit. The bone marrow aspirate. The 11th one. Well this one was all wrong. She could not get any marrow! Crazy I know, but I have heard of this happening. She tried twice to no avail. And I got dosed lidocaine twice. So by the time I went for down to the infusion room for my methytrexate I was a little drunk and belligerent. A got a new nurse to give me my shot. She sees my tattoos and decides to inform me that “red and yellow ink are a higher risk for skin cancer”. You know what? I did not want to hear anything like that. Not after all the crap I had just been through. I whatever-ed it, got my shot went to the back room to rest off my lidocaine drunk. What a visit! To get a bone marrow aspiration, we rescheduled for the following week, July 3rd.
The bone marrow aspiration (my 12th – I got all the pain with the prior week’s so it counts) on July 3rd went well. I still do not have the results. Unfortunately my white blood cell count was only up to 3.2. My doctor cut my mercaptopurine dosage in half. Yay. I have never liked mercaptopurine. Then, who really likes cytotoxins??? No known reason for the drop in my white blood cell count. It could be my body’s reaction to the drug regimen after two years or the bone marrow aspiration results might have something to say.
Today was my normal weekly visit. A complete blood count and my methotrexate shot. Good news. Cutting the mercaptopurine dosage might be having an effect. My white blood cell count today was 6.3! Only three more visits. I am done on July 31st. Done with drugs. There will be another bone marrow aspiration that day. Meh.
Other news, I am in middle of my last round of ATRA. Like last time, it is kicking my butt. I tell you, I could sleep 16 hours a day. Easy. Thankfully I will be done with ATRA on the 18th.
21 more days of drugs. That is it!
My tenth bone marrow aspirate was clear. Hematologically, cellularly and molecularly. This last round of ATRA really wiped me out! Of all the ATRA I have taken I cannot recall being so exhausted every day. The good new on this is, I am pretty sure that was my second to last round! Less than four months until I am done with the maintenance part of my protocol!
Ten. That is right, ten freaking bone marrow biopsies. Ten “Bad MF” days. I am happy to report my 10th bone marrow biopsy went just fine. They hurt, but I just breathe. Results in seven to 10 days. I expect to be just fine. Also noteworthy, I started my second to last round of ATRA. Not much left of the maintenance phase of my protocol 🙂 Drug free in August 2007!
So two years ago, everything changed. 2005 was tough. Cancer treatment and a divorce is quite a deal. 2006 was new: I was single, healthy and attended two regional burns and Burning Man. Good stuff. Looking back today I realize something else. At the start of 2005 Sarah and Jack were close to me and were in contact with me daily. My best friends. It had been that way for years. Today I am no longer in contact with Jack and well it is obviously different with Sarah. She is my daughter’s mother. Aye, everything changes…
For what it is worth, the results of my ninth bone marrow aspiration were fine. My weekly complete blood counts are excellent. I only have about six more months left of my two year maintenance protocol!
Okay my eighth bone marrow aspiration went fine and the results were grand. Only eight more months of maintenance! And on Tuesday, January 9th..my ninth bone marrow aspiration. You know, nine of those in less than two years is kind of a lot! Yuck.
Sigh. It’s that time again. My eighth bone marrow aspiration will be Tuesday, October 17th. Wish me luck!
By the way, if you have some extra $$$ it’s not to late to back me on my Light the Night Walk. All donations go to The Leukemia & Lymphoma Society. Just click the button to the right —>
Katy and I are raising funds for the Leukemia and Lymphoma Society again this year with the Light The Night walk this fall on the SMU campus. For more information or to make a donation click the link on the right. The walk is Sunday, October 29th 5:00 – 8:00 PM. If you would like to walk with me and the Cowchip Crusaders, send me an email, leave a comment or contact me somehow.
Hey! Per my doctor all my chromosomes are still normal!
Looks like my blood counts are stabilizing at around:
White Blood Cells: 5.0 10^3/uL
Hemoglobin: 15.7 g/dL
Platelets: 282 10^3/uL
Neutrophils: 3.5 10^3/uL
All very respectable!
Also, I am doing the Light the Night walk again in October. If you would like to walk with my team let me know. For donations, I will put a link on my site again this year. Soon.
Today I go for my SEVENTH bone marrow aspiration. Sigh. Never know what you’re going to get with these things. Meaning the getting them part. I think the results will be good.
I found out a few months ago that your blood counts are easily affected. You could say, run up a flight of stairs and affect your red blood cells/hemoglobin counts. Or if you are fighting an infection your white blood cell count and neutrophil count may increase. Since about mid-May I have been fighting allergies on and off and my white blood cell and neutrophils counts have been higher. I guess that’s bad and good news. Bad news is I have been fighting allergies, good news is my immune system responds!
For old times sake, here’s my counts on July 12, 2006 :
White Blood Cells: 5.5 10^3/uL
Hemoglobin: 15.4 g/dL
Platelets: 257 10^3/uL
Neutrophils: 3.7 10^3/uL
Really good counts. The side note is I finally started taking my allergy medications again (I do not like taking anything unless it absolutely necessary). Funny, I feel a lot better…
I got the call on my bone marrow aspiration results on Friday. They sure are getting these things turned around quickly these days. The result is I am still clean. The nurse said my doctor was “especially pleased”. Nice. I really could not ask for more 🙂
I have been taking Vesanoid (ATRA) for over a year now. Monday is this first time I saw the packaging it comes in. The warning struck me as funny. I’ll do my best.
My sixth bone marrow aspiration was by far the easiest. I have a great doctor. We talked and joked the whole time. I am by no means “tough”. In fact, I am kind of wimpy. I guess I am just lucky enough to get the right lidocaine mixture each time. Only 10 or 11 more to go!
I also learned just how inaccurate complete blood counts are. Well at least in regard to neutrophils. Apparently if I had an active infection I might get a high count because they would be out and about. Conversely, if I had a localized infection the neutrophil count might be low because the neutrophils would be to busy to show up for roll call. Or the low counts could be neutropenia. A condition I became all to familiar with in 2005. And you can add to that the fact that a neutrophil’s life cycle is very short. As in, measured in hours. Anyhow for what it is worth, my counts this week:
White Blood Cells: 4.5 10^3/uL
Hemoglobin: 14.7 g/dL
Platelets: 271 10^3/uL
Neutrophils: 3.1 10^3/uL
The average range for neutrophils is 1.5 – 6.5. I do not think I have ever gone up 4.0. I guess I don’t have an infection!
Today is a big day. My sixth bone marrow aspiration. Wish me luck!