How are you feeling?

I get asked how I am feeling about 20 plus times a day. I get asked by doctors, nurses, patient care technicians, visitors, family, online friends, etc. The nice thing is, it is sincere. Unlike the average walking down the hall at work, “Hey man, how are you?”

For a guy in the hospital for one month getting treated for Leukemia, my answer has generally been “good”. But this morning just sucked. My mouth hurt and bottom hurt even worse. I bitched enough that I finally got some products to feel better. And so, the day got better. I feel pretty good again.

Well all modesty is lost too. The staff asks about all output and input. How much did you drink? How much did you eat? They chart it all. Making sure I am hydrated. Making sure I am not retaining water again. Oh bother.

They check my vitals. They check my lungs, my breathing. My mouth, my skin and my legs and ankles. Do you have a rash? Have I become a horse???

So feel free to ask me how I am feeling. Yeah I hear it all the time, but at least I know it’s sincere.

Blood Count

Yesterday my white blood cell count was down to 1.8. The previous day they actually went up in the 2s. Which I was told is statistically insignificant. Meaning we are still on track. In fact, I also learned that with my classification of AML (M3 or just APL) the white blood cell count does not always zero out and that is fine. The important thing is new cell growth. So we are still on track and still on watch 🙂

Come on good bone marrow and good blood cells!

On the other blood counts, my hemoglobin has been holding steady a few days so no need for a red blood cell transfusion. However my platelets were low so I got a precautionary bag of platelets yesterday. Oh I feel like such the vampire.

Pain in the Mouth

One of the common side effects of chemotherapy is a sore mouth. Today has been the worst for my mouth. The gargles are okay but not quite enough to eat. Supposedly this should get better soon. It was constant pain so I had to call for pain medication. I got codeine.

Today my hemoglobin count is low so I am getting a red blood cell transfusion today. Red blood cells make me feel a lot better. Go vampire! This morning before the transfusion, I thought I would try and take a shower since I was unhooked from the IV pole. I was a little tired standing up but not short of breath. Anyhow I got into the hot shower. Bam! Almost immediately I started to faint. I grabbed the rails and lowered the seat in the shower and sat down. I just could not recover any energy. So I shut the shower off, threw a towel in my lap and pulled the nurse call cord. Embarrassingly I had to be wheel-chaired back to bed 🙁 Moral of the story? Don’t take a hot shower when your hemoglobin count is low!

So back in bed, I was embarrassed, mouth hurting and ready for transfusion. Once the transfusion started I went to sleep. A good, deep sleep too. When I a woke I saw I had a visitor. This vistor was a big surpirse. My friend David from San Francisco! Based on the day I had been having, from his perspective he probably wishes his timing was different but from my perspective his visit really lifted my spirits and could not have been timed better.

The Next 48 Hours

I am pretty much at the height of the affects of the chemotherapy: neutropenic (no immune system), weak, tired and nagging aches and pains. In the next 48 hours I might start new cell growth. That means I will start feeling better. Until then I intend to lay low and rest. This means I might not be on for instant messages and might not update this blog for a few days. But I am still here resting, getting better, putting this thing into remission 🙂

Wheeeee!

For the “How are you feeling question?” My mouth still hurts but is feeling better. At least I ate more today. And I am not 100% steady on my feet. But good enough to get around my room and take a seated shower 🙂 I also have some congestion, so my main doctor ordered a chest x-ray. I had a chest x-ray done in my bed in my room since I was moved to the oncology floor. So, I figured that is what they would do again.

BUT! I got to go on a big adventure. I was wheeled to the main hospital building radiology lab! It is a couple of blocks away but connected by a tunnel system. I got wheeled there and back in bed propped up. It was awesome! It may not sound like much to you, but consider I have been in this building and mostly my room and mostly my bed since April 2nd. It was nice to get away from the oncology floor even if only for an hour 🙂

WooHoo

I got to take another ride to the Main Building Radiology Lab. This time for a cat scan of my head. To check my sinuses. Seems kind of extreme, huh? Well when the risk of infection is this high, no one takes chances.

This time the ride was in a wheelchair. Not as much fun as a big bed but, hey, at least the porter was a cute girl 😉

Routine…

I take 900 pills each day. Get 900 antibiotics dripped into me each day. Apply 900 creams and ointments to my body. Get 900 examinations a day by doctors and nurses. They all ask the same 900 questions. They take my vitals and weigh me 900 times.

Okay. I might have embellished the numbers. But you get the idea. It “feels” like 900 times.

Here is what is new with me.

– After three weeks, more or less in bed most of the time, I feel a little weak on my feet. I am getting a physical therapist and an occupational therapist.

– My blood counts are all still very low. In fact I am getting two more units of red blood cells today due to an excessively low hemoglobin count. There is a chance I will need platelets tomorrow. I am so ready to be independent on the this blood thing. Come on bone marrow!

– If everything goes as expected I could be discharged from the hospital on May 1st. That would be wonderful. Of course this all hinges on my bone marrow responding correctly to the treatment.

– Lastly, my hair around my hairline comes out by the fistful with great ease. You know, aside from the smoking, I always thought Yul Brynner was way cool 🙂

Fever

The last two nights and days I have ran a fever. Strangely at 4:00 am the last two days my temperature dropped to 98.6. Unfortunately it rises back up.

The concern is that the fever is due an infection. A likely candidate is sinusitis as my sinuses are full. They are still checking other possibilities though. All is being checked. Meaning they are taking lots of blood cultures. Sometimes it seems like they give me blood just to take it away again.

In spite of my concern about my temperature I still feel pretty good, aside from one lingering mouth sore, sinusitis and cabin fever.

Sheared!

Last night Mr. Heath and his wife came to visit. It’s really been too long since we’ve seen them. So, it was a great visit and good catching up.

Right before they left Mr. Heath did me a huge favor and shaved my head. I have mostly worn my hair longer. I have not ever cut it short enough to see the shape of my head. I am pleasantly surprised that it doesn’t look too bad!

And no, there are no pics to post yet.

Zit Surgery?!?!?

Ever had a zit surgically removed? Well I have.

About five days ago I developed a pimple at the base of my neck, right above the sternum. Well a good part of this week my blood counts have been low, so rather than healing the zit had become raised and inflamed.

The doctors were concerned the spot had become infected and might be a source of my fever. The doctors initially thought a biopsy would be a good test but my platelets were to low to consider doing in my room. So, they decided the best thing to do would be to take me to the Operating Room, put me under, insert a breathing tube, put me on a ventilator, open the area and clean the area, then pack it with gauze, tape it, remove the breathing tube and then bring me back to consciousness.

And that is just what they did this morning. They surgically removed my zit.

And they are testing everything they cleaned out of there for various infections.

And I got to take another trip to the Main Building. Woohoo!

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.

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.

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!

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.

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.

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

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.

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.

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.