Category: Leukemia

My blog while fighting APL in 2005.

Burning Man

Okay this is pretty wild…

Looks like I am going to go to Burning Man this year after all.

I feel as strong as I ever have right now. And I suspect that at the beginning of September I will still feel this way or better being that much further removed from the chemotherapy treatments.

I also found out that I will be taking ATRA for 15 days every three months. Thus I will be “light sensitive” only in those months. The way it falls out, I will not be light sensitive during Burning Man.

Believe me I will be extra cautious and limit my sun exposure time as much as possible. If things do not seem right, I will get out of there ASAP.

So, I got an extra ticket. Any friends of mine daring enough to go along???

Just wow…

I had a regular doctor’s appointment with my oncologist/hematologist today. First I went to the lab to have my blood drawn for cell counts. then to the nurse’s desk for vitals to be checked. Then to the examination room to wait for the doctor.

When she came in she announced, “You’re blood counts are better than mine!” Wow. Just wow… All of my cell counts were normal for a male of my size. I have been off of all cancer treatment related medication now for over 48 hours. No blood transfusions since the second half of April. Last chemotherapy infusion was May 12th. And here I am 56 days after diagnosis, walking around like a normal guy. Amazing.

In a couple of weeks I start my third round of chemotherapy. It will be five days in a row. This time it is not Idarubicin. It is Mitoxantrone. Same family as Idarubicin. Idarubicin is orange and when you take it your pee looks something like Tang. Apparently Mitoxantrone is blue and I will be peeing pea-green pee.

Chemo Bucket

A couple of weeks ago I had a bunch of Lovenox injection needles to dispose of. So I took them in an mayonnaise jar to my oncologist office to get rid of. They threw the whole jar out. They gave me this chemotherapy waste bucket for my future needle disposal.

Chemo Bucket
Later that day I found out my blood counts were better so the Lovenox injections were no longer needed. So I got this nifty waste bucket to keep. Kind of a cool souvenir.

Good news first?

Today I had my blood drawn for cell counts. When I called into the nurse to get the results, she asked if I “wanted the good news first, or the good news?”

Wow. My platelets are down to 280,000. That is human range again! No more aspirin and no more dang Lovenox shots in the stomach twice a day.

My white blood cell counts are low but respectable. My neutrophils are enough to to take care of myself. And my red blood cells are anemic but high enough!

All counts are coming back up from the consolidation round of chemotherapy. Already!

That means I did it! I went through chemotherapy as an outpatient!!! No easy feat for those fighting leukemia, in my humble opinion.

In fact, the counts were so good, they canceled next week’s blood draw. I do have a full doctor’s appointment late next week. That will include a blood draw for cell counts. And knowing my Oncologist/Hematologist, she will want to do a bone marrow aspirate. Ouch!!!

Gilda’s Club

Today I started the process of joining Gilda’s Club North Texas. It is a part of Gilda’s Club Worldwide.

Gilda's Club Worldwide

I cannot even begin to tell you what an amazing place this is. They have support groups for cancer survivors, for family and friends and for children of. They have art, culinary, yoga, pliates, etc. workshops, classes and a library. Rooms to hang out in, meet in, etc. And for people like me, the child room can work like a nursery during scheduled activities.

What an Oasis. I am so lucky to work so close to one of the 18 worldwide locations. The place is very beautiful and elegant.

Oh and the price of membership? I am already paid up by having cancer. Not a club I would have ever wanted to be a member of, but a club I am so happy to be a member of. If you have ever donated time or money to Gilda’s Club, thank you.

In case you are uncertain, yes this club is named for Gilda Radner. Check the links above for more history information.

Chemo Daze

Well it seems the consolidation round of chemotherapy is taking effect. I was tired yesterday. Today I am wiped out. I also feel achy and have a headache. If this is the worst of it, I’ll be very lucky. Really I feel like I am doing better than I did with the induction round.

Well, either way this will pass. Healthy good new cell growth will restart again. In between…chemo daze…

w00t!!!111

Blood counts today are darn near a normal guy’s!!!

My white blood cell count is 6.7. Very much average for a male my size. I have my very own immune system!!!

My red blood cell count is still technically anemic but going up!

My platelets are still astronomically high, but they are coming down.

Tomorrow is my last chemo infusion for the consolidation round. On Friday they will give me a white blood cell booster shot. This will be to keep me with an immune system while the chemotherapy resets my bone marrow blood production again. This sounds much better than being laid up in the hospital on antibiotics 🙂

Oh, and most important? No leukemic blast cells in today’s blood smear. Still in hematological remission folks!

Blood Counts

Here is the information on my most recent blood counts:

– White blood cells are low but acceptable. I just need to be careful to keep my hands clean and watch out for who I come into contact with. No sick people!

– Red blood cells. Technically, I am anemic but I am far better than I was on April first when I checked into the hospital. I do not get tired. No fever, no shortness of breath.

– Platelets are whack. I have about two and a half times the amount of platelets a male of my size should have. While this sounds good considering it was not long ago I had to get platelet transfusions, it is not. To fix this I am taking Lovenox shots twice a day (in the stomach) for another 30 days. I am also taking an aspirin once a day.

Well I am finding out that I am not my blood counts. I still feel good. I can drive, walk a long distiance, take a warm shower…all with impunity 🙂

Surprise!!!

Today I had an appointment with my Oncologist/Hematologist. I knew she was going to be putting me back on ATRA. But I did not know we would be starting the continuation round of the chemotherapy (my chemotherapy drug is Idarubicin). Well I checked out healthy (well enough for chemo) so we started it today. The next three days will be the rest of the continuation round.

I have been talking to my body and this time we are only going to kill off the leukemic cells. I am going to remain an outpatient. Meaning, no infections, no fever and no need for blood transfusions. Needless to say, I need all the help I can get. So I ask again. If you are the praying kind or the karma good thought kind, I will take your support. Why? Because I am selfish. I am young, I have a life to live, I have a young daughter to raise. I want 100% remission. I thank you for any prayers or kind thoughts.

A couple of weeks ago, my mother-in-law said “leukemia or any cancer for that matter is not for sissies”. I would extend that to any major disease (cancer, MS, lupus, heart disease, etc.) In all my hospital stays and doctors visits I have seen other patients fighting. In my book, anyone at any age, actively fighting a major disease is strong. Whether or not they survive is immaterial, they are still strong. You have to be strong mentally, physically and spiritually to fight a major disease. The day I went through my last bone marrow aspirate without morphine or sedation and then went and did physical therapy 15 minutes later, I gave myself the title “Bad MF” for the day (if you do not know what MF stands for, don?t worry about it.) I figure anyone that can do that, is strong, very strong. I am not boasting, on days like that, I surprise myself. I credit my God and my faith in God. I credit your prayers and kind words and thoughts. Again thank you.

Today I was introduced to a new site, Planet Cancer. It was started by a cancer patient that felt most cancer information is directed at pediatric and geriatric patients. This site is for the rest of us. It?s honest, dark and humorous, sometimes all at the same time. Seriously, in fighting cancer, there are so many battles, the treatment is a long journey (heck I am only in day 39, two years lie ahead of me), you have got to have some levity about the situation to get through it all.

The Mind Body Connection

I have been reading two books:

Peace, Love and Healing

“Peace, Love and Healing : Bodymind Communication & the Path to Self-Healing: An Exploration” by Bernie S. Siegel

and

Getting Well Again

“Getting Well Again : The Bestselling Classic About the Simontons’ Revolutionary Lifesaving Self-Awareness Techniques” by O. CARL MD SIMONTON, JAMES PHD CREIGHTON, STEPHANIE MATTHEWS SIMONTON, Stephanie Matthews, James L. Creighton

Both books have given me a lot of confidence that there is a strong connection between my mind, body and spirit. It should be obvious at this point that when fighting a major disease it is helpful and beneficial for the patient to stay positive and optimistic. There is more to the mindbody connection than just that. That is almost superficial.

There is some evidence that my life style in the last 12 to 18 months could be the cause to of my leukemia. That is not to say I consciously gave myself leukemia. Or that my mind gave me leukemia. BUT consider these facts: I rarely lived in the moment. I thought life would be better when…when I painted that painting, when I took that vacation, when I got that car, etc. I never really stopped to be with my daughter, with my wife, to smell the roses so to speak. I was always getting up, grinding through the day, fighting for a utopia that I could not even have defined for you! And do you know you how fought through those days? Usually with anger. I have learned that the kind of anger I had releases adrenaline, toxic, corrosive adrenaline. Now did anger and adrenaline give me my leukemia? Screw up my bone marrow?s cell growth? I don’t know. I will probably never know for sure. BUT I can tell you this, it is food for thought. My disease has told me a couple messages about life:

1. Live in the moment. It is really all any of us have. That is not to say I should not plan or have goals. It is to say I do not need to live there anymore (the future). Because no one else is out there yet. I do not even know if God is hanging out in the future. It sure did not feel like it.
2. Slow down! Stop and enjoy what is going on right now. Smell the dang roses!

The other part of this mindbody connection is healing. I am actively telling my body about the aforementioned changes I making in my life. I hope it reduces the stress on my body and helps it feel confident in producing good cells again. Not those dang leukemic ones. Yet another part is visualization therapy. Visualization of the medicine correcting my bone marrow and my blood cells. It can be a visual metaphor or a literal visualization of the cells at work. This is so my body can know what to do and how to react to the treatments.

I really think there is something to this mindbody connection. It feels good. I feel confident in communicating with my body this way.

If something is bothering you, even if it is minor, I highly recommend looking into these techniques. Even if you are skeptical, realize, it cannot hurt.

Woo Hoo!

Went and saw my Infectious Disease Doctor today. She is taking me off all of my antibiotics! I am thrilled. While I feel really good, the meds make me feel dizzy, hazy, etc. I am really starting to feel like myself again.

Back to the office (work) on Monday.

Church

Well today I drove to church. It was awesome. Just good to be back on my feet doing everyday things.

Yesterday was wonderful. My daughter said “Daddy’s home” and “Daddy haircut” I don’t know how many times. And when she went to bed, “Daddy snuggle”. Truly a great day.

By nine o’clock I was whipped. And I slept well. No one took my vitals all night. No one came in and drew blood at 5:30 am. What a great night’s sleep!

Here is a picture of me bald (finally), after church, updating the blog:

Bald Michael

Home

I was admitted to the hospital on Friday, April 1, 2005. I was discharged on Saturday, April 30, 2005. They told me it would be about a month. Talk about accuracy. It feels really good to ride in a car, to be at home, to hug my daughter…

My status is that, I am hematologically in remission. Molecularly I still have leukemia.

In two weeks I start my second round of chemotherapy. This time, as an outpatient.

Dang Clots

Well a Doppler scan on my left arm today showed yet another blood clot. These blood clots are a very probable cause of my ongoing fever. The good news is that my platelet count is now high enough for them to give me a blood thinner to try and dissolve the clots. So maybe the fever will be gone sooner! And I will be home sooner!

My blood counts are up again today. My bone marrow aspirate results are good. My bone marrow does not show leukemia. The molecular tests of the bone marrow still do show leukemia. Hence, multiple rounds of chemotherapy.

Bye Ally

Last night I noticed some swelling in my left arm by the elbow. When I showed it to the doctors today they took me off the IV fluids and the one remaining IV antibiotic (all other IV antibiotics were moved to oral yesterday). So, blood clot in each arm but I do not miss the burden of being hooked up 20 – 24 hours a day. Bye Ally, thank you for your care.

To help resolve these I keep my arms elevated as much as I can. Should be interesting when I go to bed tonight. I will have a stack of three pillows on each side of me to elevate my arms. I hope there is room left me.

Still running a fever. Lower than yesterday though.

And…my counts are up!

Bone Marrow Day

I did it. I got through the bone marrow aspirate. Without morphine and without sedation. Some people have asked why I did not get morphine or sedated. Here is why: 1. I have about 15 more of these bone marrow aspirates ahead of me in the next two years. 2. As an outpatient my only two (convenient) options will be to have them done in my oncologist’s office or at the hospital under sedation. 3. The pain for the method I chose today is quicker. I was walking the floor with a physical therapist minutes after the procedure.

Still running a low fever…waiting. My right arm is not as swollen today. In general my counts up today. And for the first time platelets are up. Only a little but still they are up.

And after going through today’s bone marrow aspirate so well, my spirits are up too. I was not looking forward to that procedure.

Woah! Why is my arm so big?

Last night around 10:30 I noticed my right arm (same arm as the PICC line) somehow felt heavier. So I examined it. The forearm and the elbow seemed puffy. I called the nurse. They verified it and and speculated it was a blood clot. The nurses checked the swelling through the night it did not increase.

This morning my doctor was notified of the swelling and ordered a Doppler scan of my arm. That revealed that I did in fact have clotting in my arm. So the PICC line was removed. For my IV medications I now have a regular IV needle in my left arm again.

To get rid of the blot clotting I cannot have a blood thinner. I don’t have a high enough platelet count. So I have to keep my arm raised and let it work itself out.

The good news is this might be the source of fever. One more small thing to get through in the big picture.

Tomorrow is bone marrow aspirate day. Ouch.