7/29 - PET Scans and 2nd Opinions

It's been a while since my last post (21 days to be exact) and not a day has gone by without Kristine reminding me of my negligence in posting to the blog. This is not because she is particularly excited to read what I have to say about her day to day activities, but rather that she is diligently passing along your feedback, the most common and frequent of which is, "I check the blog every day. Why has Ryan not written?" Well to appease this restless blogience (a blog audience) Kristine and I have come up with a solution. I will continue to write from time to time. However, since Kristine has some extra time on her hands she has decided to take on some of the regular postings. I hope you enjoy. As for today, it's been so long that I hardly know where to begin.

In my previous post, Kristine had just finished her last cycle of treatment. She took the first week or so to recover and rest, but more recently is back to her old self -- running from place to place, visiting friends and enjoying her renewed energy. Her thrush continues to linger and her hair is slow to return, but otherwise she seems full of health and has started to gain some weight back. Kristine jokes that she doesn't feel like anything is wrong with her at all.

Her parents returned to Michigan after spending a few weeks with us (her mother was here during Kristine's final chemotherapy cycle). They plan to return for Kristine's surgery, which will likely take place in late August. I know it means a great deal to Kristine (and to me) that they've taken so much time to help and be here for support.

Kristine has also had a couple of other friends come into visit from out of town. One in particular is worth a special mention. Barbara, a friend from when she Kristine lived in San Diego, wins the award for most diligent supporter. She has sent a card every single day since Kristine was first diagnosed with cancer. I wouldn't be surprised if the post office makes her an honorary spokeswoman.

Last week we met with Dr. Staddon to review Kristine's latest round of CT scans and to discuss next steps. Kristine, her parents and I left the office feeling positive about the conversation we had. Dr. Staddon was very pleased with the CT scan results. Although there was no major change reported in the size of the heart tumor from the previous scan, he felt that this was a good indication that the mass was inactive or dead. He also gave us more confidence regarding the potential, but ambiguous, mass in Kristine's shoulder, under her clavicle. This presentation has been an ongoing source of uncertainty. Scan results have communicated mixed information about a potential mass in this area interpreting it to be either scarring or tumor. The latest report stated, "In the region of the previously described enhancing soft tissue lesion located posterior to the right distal clavicle there is a small amount of residual soft tissue that may represent residual tumor vs. scarring." The uncertainty is related to just how far up Kristine's veins the tumor extends. Dr. Staddon articulated that no risk should be taken and that surgery should seek to extract whatever soft tissue is present in this vein at the same time the heart tumor is being extracted. It was a relief to discuss this topic with a definitive response from Dr. Staddon. Kristine especially felt more confident.

As for next steps, several things were discussed with Dr. Staddon. We discussed scheduling a follow up appointment with our heart surgeon, Dr. Bridges. In addition, we would need to meet with a vascular surgeon to discuss extraction of the soft tissue from the vein. Also on the agenda of topics was the potential for a PET scan. This is an imaging procedure that measures glucose metabolism of cells. Since cancer cells utilize glucose at a faster rate than other cells, the scan can differentiate malignant cells from healthy cells. The scan measures the uptake rate of malignant cells to determine how rapidly they are growing, if at all. We have long know that our insurance provider will not cover a PET scan for Kristine's particular form of cancer. However, we are willing to cover the cost in an effort to get the most complete understanding possible of Kristine's situation. With the research rate that Dr. Staddon can secure, the cost is actually not very high. Kristine is scheduled to have the procedure done on Monday and results will follow on Wednesday.

While Kristine will proceed with taking all necessary steps to receive proper care in Philadelphia, we have also been working to get a second opinion at MD Anderson in Houston. This has been challenging to say the least. As a large hospital, it will not commit to an appointment until all referrals have been approved. However, it's an out-of-network provider which requires us to prove that it's a medical necessity for Kristine to receive an opinion from this particular institution. We are justified based on her rare form of cancer and still rarer presentation of the disease, but getting through the bureaucracy to prove this takes time --time that Kristine doesn't have. Dr. Staddon has been a great help, contacting one of the hospital's sarcoma specialist, Dr. Patel. But even as an insider he is having a hard time wading through the bureaucracy. Kristine had planned on going out to Houston for a personal trip this coming weekend at which time we thought we could also meet with Dr. Patel. But with three days left and not much progress made, we may have to plan a separate trip closer to Kristine's surgery. We should know more on Monday.