No Side Effects

I thought chemotherapy made one sick from the side effects. It seemed to have had the opposite effect on Art. Art felt the difference in a few days later. I saw the difference. It was like a fog was lifted and he started thinking clearer. His color was coming back and he was joking around with me. Oh how I missed that! As crazy as it sounds Art was looking forward to the next treatments. We had less than 3 weeks to wait for round two. 

I have good news. We had an unplanned visit to the Dr. for Art. He had a problem with hives over the weekend...his blood work was in for his chemo treatments tomorrow. His white blood is down and his red blood count is up. His platelets were good. This means the chemo is working and he does not need a transfusion. God hears the prayers of many. I am so thankful! 

Chemotherapy

Chemotherapy is a tricking thing. Your body must be able to handle the drugs and the attack it will have on your immune system. September 20th Art had a 3rd blood transfusion recieving two units of blood. The following Friday Art had a complete blood work up to make sure he could handle the treatments. The treatments are given over two days with 28 days in between for 6 months. Dr. Veith is Art's Hemotologist and Oncologist. The treatments are given in the Dr.'s office.

There are 7 recliners lined up arm to arm in a small room. Add few more chairs for the caregivers who bring someone with them and the room is crowded. nurses wear protective clothing and a mask while preparing the cocktails of chemo drugs.


Infusion Center at EJGH

Art's special cocktail consist of two chemotherapy drugs. Bendamustine and Ritiximab. Dr. Veith told us he has better success with the combination of these two drugs. For the first time treament of Leukiemia the combination of these two drugs are less toxic and more aggressive in treating stage 111 and lV.

Ritiximab can block cancer growth in different ways. Some block the ability of cancer cells to grow and spread. Others find cancer cells and help kill them or carry cancer-killing substances to them.

Bendamustine works in different ways to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. The combination of these two drugs kill more cancer cells. One of the side effects from this drug is Tumor lysis syndrome.

Tumor lysis syndrome ocurrs when large amounts of cancerous cells are rapidly killed by the therapy. These cells are release uric acid, potassium and phrophorus into the blood stream. This can lead to kidney failure. If this is going happen it will occur within 24 - 48 hours of receiving therapy.

09-07 Second Chemo Drug

The first two days of chemo treatments started with Bendamustine. Art's white blood count was to high for the combination of both drugs on the second day. He tolerated the Bendamustine with minimial side effects. Art had more side effects from the IV benadryl. On day three after chemotherapy I started noticing a difference with Art. His color was improving and he his thoughts were clearer.

Friday we had an appointment with the ENT. Dr. Jocob finally got the right combination of medications to keep Art's sinus infection under control. We gave him the name of the chemo drugs to add to Art's growing list of medications. At the end of our visit Dr. Jocab looked at Art and said "I am not trying to offend you by saying this, But you will never be N O R M A L again. Anything that changes from now on with you must seek medical attention." The hardest part for Art is admiting how serious things have become.

Quest Diagnostics dropped the ball with Art's blood work the day before his chemo treatment with Ritiximab. They did the test for his Uric Acid level but did not do the complete workup on the standing orders for his blood counts. The nurse had to draw blood and send it to the hospital. We had to wait for the lab results before they could begin. While we were waiting I started having an anxiety attack. I started tapping my forehead. Art didn't say anything but he knew something was wrong with me. The nurse started the medication. She told us what to watch for if there was a reaction. She told me if he falls asleep and opens his eyes and looks around like what was "that" to be concerned. The Benydrl was making Art sleeply and twitchy. I watched from across the room. Art was becoming agitated and irritable. I called the nurse and she talked to Art about how he was feeling. They dicided to stop the medication and give Art a break for a few minutes. The second time they started the medication I watched all the color drain from Art's face. I became concerned but contiuned to watch for other signs of a reaction. Art opened his eyes and looked around. I asked if he was alright and he said yes. A few minutes later he looked around again this time with the what was that look. I asked if he was alright and he said no. I got the got the nurse. She started asking asking Art questions about the way he was feeling. He said he felt like he wasn't getting any air trying to breathe, he was feeling week and neasuated. Art's blood pressure dropped to 80/50. The nurse stopped the IV and called Dr. Veith. Art got violently ill. Dr. Veith came into the room and started talking to Art and rubbing his back telling him it was going to be aright. They gave him another shot to stop the reaction. In all my years of going to the doctor I have never seen a doctor show so much empathy towards one of his patients. The treatment was discontined. We had to wait for Art to become stable before we could home. They called in a prescription for Allopurinol to lower the uric acid in Art's blood. It should help lower his white blood count so he will be able to tolerate this drug with his next treatment.

I have never been so scared in all my life watching Art go through this. Oct 28th we start round two.

GoFundMe

I started a fund to help cover the other things that are needed to help Art get better. I am not looking for help to cover the astronomical cost of the medical treatments. I am trying to cover the other things that will help put the odds in his favor to make it through the chemo treatments. The first and foremost is going to the dentist and getting his teeth fixed. Because of his condition they are breaking off. He will not be able fight off another infection with his immune system being compromised. My second goal is a vitamin C infusion. This not covered by medical insurance. This treatment will help boast his immune system and put the odds in his favor.

This week I making an appointment for the first Dentist appointment. 

Without you this would not be possible.
My heartfelt thanks for your kindness and support.

The High Cost of Cancer Treatments.

So far this is what I have learned about leukemia and the high cost of treatments.
I also defined some of the procedures involved.

Routine blood test. This was done every 3 months. Now it will be done more often.
Cost:  $700. 

Blood Cross Match and transfusion. Cost: $3,447. 

Cross Match .
Difinition: Crossmatching is a way for the doctor to test your blood against a donor's blood to make sure they are fully compatible. Crossmatching takes 45 minutes to an hour. It's essentially a trial transfusion done in test tubes to see exactly how your blood will react with potential donor blood.
It's important for donor blood to match your own as closely as possible. Otherwise, your immune system might create antibodies against the donor blood cells. In this case, your immune system correctly views the donor cells as foreign, but incorrectly views them harmful. This can lead to a dangerous and possibly fatal reaction.

1. A cross match must be used within a 24 hour period.

3. For each unit of blood that is used a unit of blood must be donated back to the blood bank.
4. If you can not find donors to replace the units you will be charged for each one. You have 6 months to replace the units. So far Art has had 6 units of blood. 3 units have been replaced.

Bone Marrow Biopsy.
Difinition: A bone marrow biopsy is a procedure that takes a small sample of the marrow inside your bones for testing in a laboratory.  This test was done to stage the leukiema and for treatment options.
You can read more about this procdure here.

1. The procedure was done as outpatient surgery.
2. Out patient surgery cost: $6,999

3. Bio Genic biopsy report $14,000.

This test was not covered by the insurance as it was an out of state lab.

We are still trying to figure out the amount we will actually owe.

Our insurance coverage for the year ended September 31st.  Keeping a very tight budget I managed to pay all the copays and most of the deductibles. I made arrangements with the hospital to pay the remaining balance for 3 visits.

October 1st we start a new year with copays and deductibles. It begins with a $700. deductible before we are covered 80%. Our new deductible will be $7,000 before we are fully covered. (up $2,000)

Chemo Therapy

Our Doctor helped us fill out paper work with the drug company to cover the cost of the chemo drugs. Our copay will be $100. Plus 20% of the cost until we reach our deductible. We have applied  through the Leukiema Foundation for a grant to help with the deductibles and copays. Our Doctor suggested we apply for financial assistance. I found out this program is no longer available. Art is scheduled for 2 treatments every 28 days for six months.

Chemo therapy cost: $96,000.

To say the costs are overwhelming is an understatement. Not having treatment is inconceivable. We will do what we have to do to treat this cancer. 

Tomorrow Art will fill out paperwork for FMLA (family medical leave act). This will ensure he won't lose his job while under going treatments. His sick days have accumulated over the years and there is vacation time to fall back on and long term disability.  We will get through one day at a time and let tomorrow worry about tomorrow.

Thank you for keeping us in your prayers. 

Staging CLL and Treatments

Writing about Art's leukemia is very difficult for me. The last couple of months I've not been able to talk about it without crying. Being a puddle of tears is not a good show of support for your husband. I am so thankful for my family and friends who listened to my fears and are helping me keep it together.

Art was diagnosed in March of 2009 with Chronic Lymphocytic Leukemia (CLL). 
For the first 5 years I would ask how Art how his doctor's visits went. He would say just fine.  My white blood count is elevated and they are keeping an eye on it.  I knew things weren't fine. Over the last six months I've watched Art's health deteriorate.  

The end of May things took a turn. What started out as a slow growing Cancer turned aggressive. I started going with Art to see his Doctor. Art's spleen was enlarged and he very anemic. He had his first cross match and blood transfusion in June. 

July was spent having procedures done to find out what was causing the anemia. All the test came back normal. Art's health continued to decline. He was loosing weight, not feeling well and his energy level was at zero.

August 18th Art had a bone marrow biopsy. When the procedure was finished he was taken to the infusion center for a transfusion. We went back the next day for another one.

We waited anxiously for the results of the biopsy for staging and treatments options. That day came on September 11th. We were not ready for results or the treatments options that were presented.

Art's bone marrow is not producing healthy red blood cells.  It has a missing a component. Without this componet his blood is not getting enough oxygen and properly filtering through his spleen.  He is not a candidate for a bone marrow transplant.

Cancer is such a heart breaking word.  Now our jounery begins.  It's a ruff road we will be traveling. Chemotherapy begins September 30th.  Tuesday and Wednesday once a month for six months. The first treatment will be the hardest with the risk of a reaction to the drugs.

It won't be a cure but hopefully these drugs will slow the growth of the cancer.

Please keep Art in your prayers. 

Love and hugs,
Beverly

Living with Leukemia

We have been living with a skeleton in our closet. I wish we could have put a lock on the closet and kept it inside longer. Five years ago my husband Art was diagnoised with CLL. (Chronic Lymphocytic Leukemia) Chronic lymphocytic leukemia is a type of cancer in which the bone marrow makes too many lymphocytes (a type of white blood cell) and is a blood and bone marrow disease that usually gets worse slowly. Life changing events: You never forget where you were and what you doing when it happens. It was an unseasonably cold spring day in the south. The Bead Cruise was leaving from the Port of New Orleans. Art told me just before I boarded the ship. He said don't worry it's nothing. My white blood count is just a little elevated. I held him close and hugged him tight. I said I love you and walked down the terminal to board the ship.

That was when the skelton moved into the closet. It was March 2009.