7/31 - Rat-tatoo-lle

On Monday, Kristine decided to use her head as a canvas and got a tattoo. Actually just a henna tattoo, which is like a thick ink that temporarily stains the skin. I thought it was fun walking around the city and seeing peoples' reactions. Not just their reactions to the tattoo, but also to Kristine's bald head, since this was really the first time that she had "exposed" herself in public.

Kristine's PET scan was seamless. We should hear back from Dr. Staddon's office with the results in the next couple of days.

Our plans for traveling to Houston have morphed a bit. Kristine's cousin Cris was able to get an inside tip from her family's doctor who works at MDA. She advised us of the hospital's strict policy for reading biopsy slides --they require a full 5 days to process them. So, instead of sitting in the office on Thursday and Friday, we are shifting our office stake-out to Monday and Tuesday in hopes of improving our odds at seeing the Oncologist.

Ryan

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.

7/8 - A Battle Won, Others Still to Come

Absorbing her final few drops of hydration fluid this evening, Kristine officially finished her final chemotherapy regiment. It's been almost five months since her first symptoms presented themselves on our ski vacation in Colorado. I think I speak for both of us when I say we feel completely turned around, not certain as to what exactly has just happened. While all time is warped by individual perception, the past five months for us know seems like an entire extra year went by and we barely blinked a second time.

The most difficult thing to grasp is that this is just the beginning. It's easy to get caught up in the victory and forget that the disease (although hopefully smaller and less harmful) is still there. This battle is complete, but there is no clear winner and still more battles to fight. The most imminent of which is surgical extraction. This is something that Kristine is having the hardest time dealing with emotionally. She has gone through so much in the past several months with little concrete affirmation of success. I read a great analogy that a cancer survivor had written on the topic of finishing chemotherapy. She said it's like a dog chasing a car and actually catching it, what now? To further complicate matters, Kristine's test results (CT scans and echocardiograms) show conflicting information. For Kristine (and all of us), this just creates greater uncertainty and anxiety for what's to come.

I've stood beside Kristine through this entire process and I can honestly say that I have only the faintest conception of what she has been through. After all, this isn't like a really bad cut that you can compare to a lesser one you recently had, simply projecting what it might have felt like if your cut had been 10 times as large and as painful. The emotional and physical distress independent to one another would be enough to send most of us over the edge, let alone having the two working together to compound their collective weight.

The short term physical effects of chemotherapy on Kristine are easy to report. There are some obvious, well known things such as her bald head and her significant weight loss (it's the lowest it has been since she was a teenager). But there are also the lesser known effects. Kristine has frequent hot and cold flashes and night sweats. Without eyelashes to prevent them from sticking together she has to stretch her whole face to open her eyelids. Her sense of smell has been enhanced which aggravates her nausea. She has seen a recurrence of fungus in her mouth (Thrush) causing swelling and soreness in her tongue. Her overall skin tone has yellowed and the folds of her knuckles and palms have taken on a dark brown tone. Her finger nails, like the inner ringlets of a split tree trunk, show white lines indicating the weeks of her treatment.

All of these physical manifestations are only temporary set backs and are likely to disappear in the next few weeks. The emotional struggle, however, will be something Kristine must endure until even well after any validation that the cancer is gone. The questions will continue to linger about whether the disease is truly gone or if it will come back.

For now, we are just thinking about getting Kristine through her nadir week. One day at a time.

7/2 - Che-mo, No-mo': Final Round

Kristine began her sixth and final round of chemo today. She always has a lot of anxiety going into any treatment cycle and this one, being the last, was no different. In fact, her anxiety was probably heightened this round knowing that all likely next steps are fairly uncertain and a bit scary.

The cancer center was booked solid today. Last Thursday and Friday there was a power outage in the building and surrounding area causing the center to temporarily close down for two days. This, of course, meant rescheduled patients and, in turn, early Monday morning delays. Rescheduled appointments coupled with a short holiday week is a recipe for mayhem. We didn't see the doctor until almost 11am. This put Kristine on track for a late night. Since her treatment wouldn't start until almost 1pm we knew we were going to be up until around 2am. To add to an already frustrating morning, Linda (the only oncology nurse that has had any success accessing Kristine's ports) was on vacation for the week. Kristine became instantly upset at the thought of port troubles. Fortunately, Margie (another oncology nurse) was able to access one of the two ports, enough to get us through one last week.

Kristine is doing pretty well though now that the cycle has begun. There is one new symptom though that she discussed today with Dr. Staddon. Kristine has been experiencing rapid but regular heartbeats (a type of arrhythmia) when she engages in even minor physical activities, the occurrences of which have been increasing. Dr. Staddon thought this was cause for concern and referred us to a cardiologist for closer inspection. Kristine has an appointment next Wednesday to get hooked up to a Holter Monitor (a device worn with electrodes to track the variation in heart activity) for 24 hours. Although this is very concerning, it is likely related to the mass in Kristine's atrium, further underscoring the need for surgical extraction of the tumor.