Here we go 'round the mulberry bush......

Where do I begin to summarize the events of the past two weeks?! I still do not have my medication for treatment, nor do I know the exact cost. Over the past week alone, I’ve been told it costs anywhere from $2,500.00 to $15,000 a month and our insurance will not cover it. I have been told twice a pharmacy would call me with a quote and I’ve not heard from anyone. Also the Nurse Practitioner at my oncologist’s, who went over my treatment plan and dosage schedule, gave me a completely different schedule than what was recommended by Stanford. In my research, I cannot find this dosage schedule anywhere. All of the schedules concur with the recommendation from Stanford. She said she would verify with the doctor, but that it is the way they always do it there. We’ve never heard back from her and we are uncomfortable that it does follow Stanford’s recommendation and we cannot verify this info.

During a visit to the walk-in clinic several weeks ago for a urinary tract infection, the doctor there discovered a heart murmur. She could only hear it when I was sitting up. She told me it was important that I relay this info to my oncologist. I don’t know if my oncologist was distracted or being stubborn, but she did not listen to my heart while I was sitting up and so did not address the issue.

Today I saw my wonderful primary doc. It was so good to catch her up on all that has gone on since my last visit with her in July. She found the heart murmur right away and concurred that it could only be heard while I was sitting up. She is glad I’m not in treatment yet as she wants me to be seen by a cardiologist. She doesn’t think it is anything serious at this point, but it must be assessed prior to treatment and the future possibility of more aggressive treatments. She is uncomfortable with all the problems I have experienced (and am continuing to experience) with the current oncologist. My primary doc thinks I should reconsider going to Stanford for treatment. Also, there is a new oncologist in town that she would like for me to consider using or possibly this new doc would work in conjunction with Stanford.

I also saw my allergist today. He is a wonderful doctor and is the one who discovered the problem with my bone marrow last May and referred me for evaluation by an oncologist. He advised me to get out of town and go to Stanford for treatment.

At this point, we are going to contact the doctor I saw at Stanford and see what kind of arrangements could be made – do I need to have everything done there or could they oversee my care and possibly work with my primary doctor here for the weekly lab work and then go down there once a month for the actual doctor visit and more specialized tests.

We went for special prayer again on Saturday as we had reached our frustration point again and were really seeking the Lord about going back to Stanford for treatment. Even though I now have another specialist to see, we feel hopeful that some direction is beginning to be evident.

Steve & I are officially “old” people now as we went for a long, leisurely Sunday afternoon drive yesterday to see the fall colors in the mountains. Sure glad we’re not having our cholesterol checked this week as we enjoyed burgers, fries and milkshakes at our favorite little diner in the mountains!

We continue to be so encouraged by those who contact us in some way to remind us they are thinking of us and praying for us. God always seems to “nudge” someone to make contact at the most appropriate times. Thanks to each of you for your commitment to us!

Red Tape

It’s the waiting game again as I wait for all the red tape to be completed before receiving my medication. My cancer drug is regulated by the federal government and it has not yet received FDA approval for use as “front line” or “induction” treatment; meaning, use as the first form of treatment. There was such success with this drug (Revlimid) in clinical trials that the FDA allowed its early release for use only as a form of treatment for myeloma patients who have exhausted all other forms of treatment. There was such success at this level that it is now being moved up for earlier use. Now, even to front line therapy, but as such, the doctor and I both have many forms to fill out, not just at the beginning of therapy, but also, each month.

This drug is very expensive and my insurance does not cover it. The doctor’s office is petitioning the drug company on our behalf to see if there would be some financial assistance for us. Otherwise, it will be “out of pocket” each month. This is a matter that needs a lot of prayer right now!

I’ve been feeling quite good this past week and have been able to get out and do a few things. However, I’m sure that will end as soon as I get my required flu shot. Even when I was healthy, I would feel “fluish” for a couple of days. I can imagine what my reaction will be like now. So, I’m trying to arrange my schedule to have several days without any commitments, such as doctor appointments and physical therapy.

Yesterday was my final appointment with the orthopedist. He was happy with my progress, but also cautioned me to be very careful with the ankle. He said my ankle would be weak and quite tender for many months yet and so fitted me with an ankle brace for stability. I have 5 more physical therapy appointments and then will need to continue many of the exercises on my own.

The financial situation regarding my cancer drug needs a lot of prayer over the next few days! And, of course, we’re continuing to pray for healing so it won’t be needed!

I apologize that I haven't posted a lesson recently. I should be able to post a lesson this week.

Stanford Answers!

At last, we have some answers! Stanford has confirmed the initial diagnosis of multiple myeloma.
It was a long day as we made the 500 mile round trip and spent the afternoon in the clinic. When we left home this morning, all we knew was that we would be seeing a hematology specialist and that we were to arrive at 1:30. At check in, I was sent to the lab for a blood draw for a complete blood count and a comprehensive metabolic panel. We met first with the young doctor serving the fellowship and after she spent some time conferring with the specialist, they returned together. The labs were completed so they had the results with them. He confirmed the diagnosis and did explain, again, how complex my case was. And, as it turns out, he suspects I have an even more rare form of myeloma than “non-secretory”, called IgD. I know that means absolutely nothing to all of you, but it does mean something to me as I have researched this disease thoroughly over the past 5 months and it meant another blood draw following the appointment for him to run a specialized test to make that determination.

What we really wanted to hear, though, was a treatment plan. His preferred choice of treatment is with a brand new drug that is in a class of drugs called “antineoplastic immunomodulatory”. It is in pill form and, although there are some side effects, they are nothing compared to standard chemotherapy. There would also be a once weekly high dose of steroids. Because I have some markers for poor prognosis, standard therapy would most likely not be as effective. This new drug (called “Revlimid”) has a much greater chance of inducing a complete remission and, if I only reach a partial remission, a maintenance regimen can be continued for a period of time.

Now we wait for the report from Stanford to reach my oncologist here and for her to call to make an appointment to see me. Then, we begin the process of getting the insurance company to approve the use of this drug, which is quite costly.

We have finally crossed one hurdle but will wait again while all the paper work is processed and sent to the appropriate people. So again, I’m most likely 3-4 weeks away from commencing treatment.

Thank you all for your continued prayers and notes of encouragement! I have really been ministered to at my low points by reminders that you are thinking of me and praying for me and the spiritual insights you have shared.

Stanford again......

I received a call from Stanford on Friday. The pathology report on the slides from my bone marrow biopsies is “inconclusive”, although they are leaning toward confirming the diagnosis of myeloma. At my first appointment, my medical history and exam were completed by a young doctor, who is currently serving a Fellowship in oncology. Once she had completed these two things, I was also seen by the staff oncologist who is supervising her training. The young doctor is also working with another staff oncologist who specializes in hematology. She will be in clinic with this specialist on Monday and because she had already seen me, he agreed to squeeze me into his schedule on Monday. If we weren’t able to be there on Monday, the next appointment would be October 22. Needless to say, we quickly arranged our schedules so we can be at Stanford again on Monday, October 8. This is the first time in many months that anything has progressed this quickly!

Thanks for the extra prayers this week! Please pray that we will finally have some answers and that it isn’t too much to hope for a treatment plan on Monday!

Stanford - Part 1

We have returned from our trip to Stanford University Medical Center and the craziness of the city traffic. By the time we were leaving the city, we were all wondering if we would need to see a cardiologist!

As I expected, we still do not have any answers. My case is “very complex”. Even though the slides from both of my bone marrow biopsies were sent to them 2 weeks ago, their Pathologist still hadn’t issued a report of his findings. They were also missing a key lab report that seems to have gotten lost during my change of oncologists. Consequently, that blood test had to repeated, as well as updating some others. I managed to track down the illusive report at the lab where it was performed and due to a misspelling of my name, my new oncologist may not have been able to locate it. Even though Stanford is running the test again, they still want the original report, as it will tell them how much the cancer has progressed since it was first done in July.

My Stanford doctor assured me that they would call me by the end of this week with an answer regarding my diagnosis. They did tell me they are leaning toward confirming the original diagnosis of myeloma, but did not want to say for sure until the report was completed by their Pathologist. If it is myeloma, they will set up an appointment for me with their myeloma specialist there at Stanford who will determine the best course of treatment for me and then work with my oncologist here in Redding. So, we are anticipating that it will be at least another month before any kind of treatment would begin. I did receive a phone call this morning confirming that my local oncologist had obtained the report and faxed it to Standford.

I must admit that I certainly do not feel like Suzie Sunshine today. I keep reminding myself that in spite of all the delays God has everything under control, but some days I have a harder time hearing myself. There are other problems beginning to develop in my body due to the cancer not being treated and it makes it a bigger struggle to keep my eyes on the Lord.