Thursday, April 19, 2012

Pain in the neck

One of the worst things my dad has had to deal with is not a symptom of Waldenstroms. Several years ago, he noticed an annoying rash and after a couple of days he contacted his doctor. It turned out to be shingles and the pain has not let up for six years. He has suffered untold misery and tried everything from lidocaine patches to acupuncture. The pain has eased but it has never gone away. He doesn’t complain, but I see him rubbing his neck and shoulder and I know he is suffering.

I was pretty sure that I would not be able to handle that. I asked my oncologist about the shingles vaccine, Zostavax. I explained about my dad and about my dread of contracting shingles. He said I should ask my primary care physician. My PCP pointed out that no one with a compromised immune system should take the vaccine. I told him that the oncologist said my immune system was uncompromised, so my PCP agreed. He suggested I contact my insurance company and confirm they would pay it since I am not yet 60 years old. He provided an Rx; the vaccine is not given in the clinic but by the pharmacist.

The insurance company confirmed they would pay 100% if ordered by the doctor. I told them I had the order and just had to go to the pharmacy to receive the shot. Oops. No, they would not pay at all if the shot is given by a pharmacist. I contacted the clinic and was told that one of their locations had nurses giving the shots one day a week and would bill them as medical (not Rx). When I called for an appointment they said they had been out of Zostavax for a month and it was still backordered.

My gynecologist practices in a different clinic, so I called them and found that they give Zostavax in the doctor’s office. Hurray! I explained that I had an order from my PCP, but that he did not work for their organization. They told me, no problem, a doctor’s order is all you need. I said it is actually an Rx and they said that will work fine. I made an appointment to come in to the shot clinic.

Meanwhile, I’m reading all the information I can find online and continue to see warnings, including that you can still get shingles after receiving the vaccine. I kept thinking, I don’t really want this vaccination, but I want shingles even less. I’m starting to have second thoughts, but then I think about my dad. I feel that I must do it before I lose my immune system and no longer have the option. The closer I got to the appointment the less courage I felt. It took everything I had to show up that day.

In the waiting room, my turmoil had plenty of time to multiply. When I am finally able to hand over the Rx, the nurse says, “This doctor doesn’t work here. I can’t give you this shot.” I explained how I had called in and I was told there would be no problem, but she was unmoved. I asked to speak to the head nurse; I had to wait, again. When I began to tell her my story, I burst into tears. Nothing would avail but an order from one of their own doctors. I gave them the name of my gynecologist but she was out of the office so I left.

My gynecologist wrote an order and I went back the next week and did it all again. This time I received the vaccination. I went out to the car and cried. I guess there’s just no pleasing some people.

Scripture reference: Psalm 94: 18-19





Monday, April 2, 2012

Family Matters

My daughter is a Family Practice physician in North Carolina. Words can’t express how grateful I am for all of the support and assistance she has given to me and also her dad through our health issues. Once the bone marrow biopsy was complete, she contacted the pathologist who was reading the results. With the added information that my IgM was over 2000, they both expected I would be told that I have Waldenstroms.

They were right. On 3/31/2010 my husband once again accompanied me to the oncologist. He told us that I have WM but that as long as I am asymptomatic we won’t start treatment. That was very good news indeed. My dad has endured some unpleasant treatments-worse, I think, than the symptoms.

Dad was first diagnosed with MGUS (Monoclonal Gammopathy of Unspecified Significance) and his doctor monitored his blood work for two years before he was diagnosed with WM. At that time, his IgM count had dramatically increased and he was experiencing symptoms-most troubling was neuropathy in his legs and feet. His doctor advised using CHOP as the first line of treatment. (Cyclophosphamide, doxorubicin/ Hydroxy-doxorubicin, vincristine/Oncovin and Prednisone)

Dad said that he was pretty much incapacitated by the chemo and was surprised by the severity of the side effects. He was so weak that he could not walk across the front yard to get the mail from the mailbox. He began by walking a few feet inside the house, many times a day, until he could walk the complete circle from den, through the breakfast room, kitchen, foyer and back to the den. It was a long time before he was able to walk around the block again.

I remember being overwhelmed with sorrow when Dad told me that he did indeed have incurable lymphoma. I have had the opportunity to travel to Texas and participate in his care as he has walked his path. The first time was very hard; they lived about 40 minutes north of the town where their doctors practiced. We made several midnight trips to the emergency room and I spent many days in the hospital with him. It was never easy to see Dad in such a situation, but over the years it did get less hard as he persevered and we followed his lead.

I do not believe that God “gives” people cancer. Along with everything else that is dark, terrible and evil in this world, it is a result of the fall. When presented with the choice to obey and trust God or do their own thing and gratify themselves, Mankind chose wrong. God designed the world to be perfect, but sin and death entered and wrought havoc. However, God can and will use anything, even cancer, to bring about our good and His Glory.

It is amazing how God so carefully and lovingly prepares us for what we must face. I am still sad that my dad has to endure this cancer, but I am so thankful that he has given me an example to follow. I am a timid person and I tend to fear the unknown. My dad has blazed a trail for me with courage and wisdom. He has shown me, “You can do this, God will be your refuge. Go step by step, trusting God; He will give you light for the step you are on. Present your fears to God and His peace-the kind of peace that cannot be explained-will be a fortress around your heart. This is the way to endure and this is the way to walk.”
Scripture references: Romans 5:12; Romans 5:17; James 1:17 ; Romans 8:28; Psalm 18:30; Psalm 119:105; Philippians 4:6-8