February 2011 - Induction - Cycle One - Day One

Well I started my medications today, so far so good (knock on wood). I had 11 pills to take this morning and then to the hospital at 1:00 for the IV drug. The IV drug was administered by a wonderful nurse at La Grange Oncology in the professional offices at Delnor hospital. La Grange Oncology is where my hematologist practices out of. The nurse was so attentive and caring answering any question and taking her time. I did not know exactly what to expect, I thought I would be hooked up to an IV and have some type of drip for 30 minutes.

First the nurse takes My vitals; blood pressure, temperature, pulse and oxygen level. Blood pressure was actually good for me, I have decided whenever Jane is by my side she has a calming affect. Next the nurse takes the time to answer any questions we have, then she is off to get the medications ready. She comes back with a tray of stuff, all kinds of stuff in this tray. I am beginning to wonder what is all this stuff and what is she going to do with it. I later decide this is just her "toolbox", every good mechanic needs a toolbox and today she was my mechanic and she was about to repair a 42 year old classic. Then she states she is going to use a butterfly needle and I ask what is that. She replies it is a small needle. She then checks my right arm for viens and notices I had blood drawn from that arm earlier in the day. She then checks the left arms and decides to use this arm. She puts the butterfly needle in, feels like a pinch no worse than a blood draw. Then she plugs in a siringe of medication and tells me it is an anti-nausea drug. She unplugs that siringe and plugs in a siringe of saline and runs that into my veins. The final step was the actual medication, which was again just a siringe of medication. All of a sudden the nurse notices I have a rash on my neck extending down my chest and back, she begins to wonder if I am having a reaction from the medications. Jane then tells me something I never knew, she states I do get a rash such as that when I am nervous. The nurse decides the doctor should take a look at the rash and checks to see if he is available. When the nurse returns; less than two minutes; the rash is gone. The doctor is no longer needed and I was done, all in about fifteen minutes (not counting the question and answer session).

All in all today was a much better day than I expected, I need to quit over thinking everything and live in the moment.

February 2011 - Treatment Thoughts

As I lie in bed this Morning I am wondering how I will tolerate the treatments tomorrow. One drug; the steroid decadron; I have to take 10 pills at one time. The nurse tells me these pills have a bitter taste and I could have a lot of energy and hunger on day one, then about day two or three I could be agitated more easily and have a short temper, might even feel like I want to crawl out of my skin. The other medications (Revlimid) has numerous side affects and Velcade could cause neuropathy along with a host of other side effects.

I wonder will the treatments make me feel sick more than the disease itself. Up to this point I have not felt sick, though the doctors keep telling me that I am.

February 2011 - Another Blood Test

Back to the hospital Monday morning for another blood test, while they try to regulate the blood thinner.

February 2011 - Thankful for Insurance

First prescription arrived today, my insurance saved me $11,000 on 21 pills; that is eleven thousand dollars; about $525 a pill. 

February 2011 - The Bartender

Jane would make a great bartender, she never lets my glass of water run dry. 

February 2011 - Rush Patient Coordinator

The Rush Medical Center patient coordinator called today, another impressive conversation with the folks at Rush. She collected some information and again provides hope as I talked with her. She states that after my third or fourth cycle of treatments (3 to 4 months) I will have another bone marrow biopsy and more blood tests. If those results are good then I will spend a day at Rush having all my major organs tested before the SCT.

February 2011 - Induction Therapy Starts Monday

Well the doctors office called today and the medications have been approved by insurance. I will start all my medications on Monday. Hoping the medications don't make me feel sick, since I have not felt sick at all up to this point.

February 2011 - 3 Liters of Water

Since I have so many proteins in my urine my kidneys have to work extra hard, so I need to drink 3 liters of water a day.  I am used to drinking a lot of water, so I am not having any trouble doing this.

February 2011 - Prepare for Induction

Back to the doctor today to finalize the treatment steps. Had some good news today, the skeletal scan was fine. This means the disease has not created tumors on/through my bones. Looks like the induction phase will start next week, this will include one drug administered through IV (Valcade) and two other drugs through pill form (Decadron and Revilimd) Some medications are weekly, some twice a week and the other is on 21 days off 7. Thank goodness for technology, I think I will have to add reminders in my blackbery to keep all of this straight. These drugs can cause blood clots, so I have started on a blood thinner today.

February 2011 - Rush Medical Center

Time to head to Rush in downtown Chicago. Rush is an impressive place in size alone. We maneuver the parking garage and the massive building to find the professional building. We register and then proceed to the waiting area. We are finally called to see the doctor. First we meet with the nurse, and the amount of knowledge she has is so impressive. She spends at least a half hour with us. Next the doctor comes in, again we are impressed with his knowledge. He spends about an hour with us explaining things and answering questions. He confirms the treatment options the first doctor described. The doctor also explains this type of myeloma can be aggressive, but has not started being aggressive yet.

This doctor with his knowledge and information provides us hope.

February 2011 - The Skeletal Scan

Back to the hospital for the skeletal scan. This was basically an X-ray of every bone in my body, except the hands and feet. Easy and painless, just time consuming took about forty-five minutes.

February 2011 - The Bone Marrow Results

Back to the hematologist office. We meet with the doctor and the results are not good. The biopsy shows 80-90 % of my bone marrow is full of myeloma cells. He also states something about my chromosomes which we don't fully understand. He also states my kidneys are being worked hard due to the spilling of the proteins in the urine. By this point me and my wife are somewhat freaking out. In the past week I had done a lot of Internet research and had learned a lot about Myeloma. The doctor then states the treatment will be a three month induction period, then a stem cell transplant, then maintnence drugs. He goes on to tell us the drug names and that I would be in the hospital for four weeks after the stem cell transplant. He also states this is not a cure.

With all this information the doctor needs one more test, a skeletal scan and another CBC blood test. The reason for the skeletal scan is this disease can cause holes in your bones and make your bones very fragile. This will either be a benchmark or more bad news.

This is a lot to take in, I want a second opinion on the treatment. The doctor openly agrees.

February 2011 - The Bone Marrow Biopsy

Back to the hematologist office for the bone marrow biopsy. This is done in a regular exam room and the nurse explains the procedure. Basically the doctor will numb the hip with a local anesthetic and then numb the bone. Then he will insert a needle and drill into the bone. The doctor starts the procedure and takes his time to insure I am in no pain. He has a tough time getting through my hip bone. Really no pain, just a little discomfort. He finally gets through the bone and begins to draw the marrow. I can feel the marrow being taken, though again no pain but some discomfort. The procedure is done and the nurse bandages up the area and I am asked to lay on my back for five minutes. After the five minutes the nurse comes back and tells me I am free to leave. The doctor requests to see me in a week, by that time they should have the bone marrow test results.

February 2011 - The Hematologist - The First Results

Back to the Hematoligist office, stress is high. The doctor gives us the results, high monoclonal proteins in the blood and urine. The doctor explains these are light chain proteins and they are failing to make a whole protein. What does this mean? Then the words come out, I think you have Multiple Myeloma, but we need a bone marrow biopsy to confirm this. The bone marrow biopsy is scheduled for the following week.

January 2011 - The Hematologist - The First Visit

I am armed with all my blood tests and my spreadsheet. I visit with the hematologist and review my blood tests with the doctor. The hematologist does a physical and asks several questions. He looks rather confused turns to his computer and selects test after test. 9 blood tests in total and a 24 hour urine test are ordered and requests I have the tests done and come back in two weeks. I am being tested for easy stuff and difficult stuff. It will be a tough two weeks, wondering if the diagnosis will be a easy or hard one to swallow.

January - 2011 - Another Visit

Another blood test and back see the doctor. This time the numbers are in decline. Red blood cell (RBC) counts and hemoglobin continue to decline. I put all my blood tests since 2003 in a spreadsheet so all values can be seen side by side. This showed that my red blood cell count had been declining since 2007/2009. The spreadsheet also showed my white blood cell and platelet counts fell between 2007 and 2009 but had stabilized. After viewing the spreadsheet my doctor referred me to a hematologist.

October 2010 - No Change

Another blood test and back to see the doctor. After 6 months of B12 injections the numbers did not change. Not good news and not bad news. Next appointment - January. Since April of 2010 I had some concerns about my blood test results and played doctor using the Internet. Not recommend, the Internet can be a very scary place. My anxiety was growing day by day.

April 2010 - "A little Anemic"

This is the beginning of my journey, my doctor states I am a little anemic and runs some additional blood tests. The result of the blood tests, B12 deficient. The fix, B12 injections for life. Starts with weekly injections for 4 weeks and then monthly injections after that. Next appointment October.