"Dealing with the Distractions"

(Friday, July 23, 2010) “Dealing with the Distractions”
Monday was a long, exhausting (mentally and physically) day at Moffitt as we began my new treatment. We arrived early for blood work and had several conferences before reporting to the Infusion Center in the afternoon for my first injection.

Although we knew the basic facts as we arrived at Moffitt Monday morning, it was still difficult to hear the doctor explain that my test results showed the bone marrow transplant had not slowed the disease. When Patra asked if there was a reason why my transplant didn’t work, we were told “no, but it is very RARE for a bone marrow transplant to fail.” I break out in hives when I hear a doctor say RARE.

My family doctor at the beginning of this journey: “Bob, you have nephrotic syndrome. It is very RARE. In 30 years, I have only had a few patients with nephrotic syndrome.”

My nephrologist (kidney doctor) upon receiving the kidney biopsy report: “You have amyloidosis which is a very RARE blood disease. I have never had a patient with amyloidosis.”

My oncologist upon receiving the bone marrow biopsy report: “you have the RAREST form of multiple myeloma.”

Mayo Clinic physician last month after reviewing my records: “your multiple myeloma is so RARE I have only had a couple of patients with this type of myeloma.”

Patra and I have learned that patients and caregivers are not always able to focus their energy on walking through the “tall weeds.” You have to deal with “distractions.” At a time when I needed to focus on my new treatment, we were confronted with an "insurance distraction.” The FDA (Food and Drug Administration) has not approved Velcade for treatment of amyloidosis, even though there are recent encouraging medical studies reporting success specifically in amyloidosis patients. Since the FDA has not given its "seal of approval" for my “nasty little disease,” Moffitt informed me that my insurance company had not agreed to pay for my treatment. We were advised that it might take 30 days for my case to be reviewed.

We are not talking about a $10.00 co-pay. Each Velcade treatment is VERY EXPENSIVE ($$$$). We are talking BIG BUCKS. A treatment “cycle” consists of two treatments a week for two weeks and then I will take a week off. According to the literature and the DVD I was given to review, I may require 8 or more treatment “cycles.”

As we did the math, the “distraction” became scary:

ONE VERY EXPENSIVE ($$$$) TREATMENT
X 2 TREATMENTS PER WEEK X 2 WEEKS X 8 (OR MORE CYCLES)
= BREAK THE BANK!

So we found ourselves in the business office signing papers agreeing that ultimately we would be personally financially responsible. (If I were a Wall Street bank, I would have applied for a bailout.) What choice do I have? My previous treatment failed. I have a life-threatening disease and the disease is winning. The only treatment option on the table right now is VERY EXPENSIVE and we can’t get insurance company approval. I would have signed anything. Actually I think I did sign anything. I believe I gave up my rights to my first-born – sorry Jenny!

Needless to say, when we finally got to the Infusion Center my mind was on the "distraction." I prayed that God would help me put the "distraction" behind me and focus on the task at hand which is to get this treatment and have it work!

Just before I was called in for my injection, our case worker found us in the waiting area and informed us that the insurance carrier had granted authorization for the treatment. What an answer to prayer! What a relief! (I wonder if it is too late to get Jenny back!)

As Patra and I talked about the day, we were grateful for a case manager that diligently pursued our claim and for those people at the insurance company that did the right thing and made a prompt decision. We also thought about the other patients and families who had been in the business office and all of our friends who are dealing with "life's distractions.” God certainly impressed upon us a sense of compassion for those who are hurting and having to deal with “distractions.”

How are you dealing with “distractions” in your life? We live in a fallen world. Therefore, we all face temptations. We all face trials. We all face "distractions." I feel like we avoided a bullet this week. But I know that other "distractions" will come our way as the journey continues.

Thanks to our FAITH, FAMILY and FRIENDS, we will prevail over the "distractions." At the beginning of this post, there is the verse from Philippians 4:8. So often during the past several months, I have been comforted when I have remembered this verse and focused my mind so that it would dwell on things above and not on the "distractions." Patra and I continue to live day by day, counting the blessings which are poured out in our lives.

Patra often tells me after a rough day that she just needs to hold a baby or play with the boys. Being with our family is the best therapy. After a rough Monday, she spent Tuesday with her grandchildren. What a difference a day makes!

As I’m finishing this blog post Thursday night, we have returned from Moffitt and my second injection. So far, the side effects have been minimal. Patra has gone to the drug store to pick up some medication for my stomach. The medication makes me very fatigued. The doctor prescribed an anti-nausea medication which the nurses give me prior to my treatment. That seems to be working very well.

Until next Friday. God willing. Thank you for your prayers!

Bob