Only time will tell... or a biopsy

So we're all done at MD Anderson, and feeling good about the information and opinions they shared. In short, they agreed with my oncologist's original plan to wait a while and scan again. They said it's not unusual for post-treatment PET scans to still show some abnormal metabolic activity. They also said that as long as the lymph node in question continues to shrink and have reduced sugar uptake (which is what PET scans measure) then there is no evidence to suggest that I still have lymphoma. They said that their approach to my situation would be to wait 8 weeks and scan, and if that wasn't acceptable to us they could do a less invasive biopsy (core needle biopsy) to determine whether there is any evidence of persistent disease. They also emphasized that I should not undergo further chemotherapy or a bone marrow transplant unless there was hard evidence (biopsy) to indicate that there is actually still some cancer left. They are going to re-analyze the tissue that was biopsied by U of M back in January to make sure that I was diagnosed correctly, and they don't expect that anything will show up differently. Still, it will be good to have a double-confirmation that I had the type of cancer that we thought I had in case it's not gone.

Another bit of helpful information that MD Anderson shared was about one of the numbers that shows up on PET scan reports. They use a measure called SUV, which is a scale of 0-40 to indicate the rate of glucose uptake in tissue. Normal muscle tissue will have an average value of 2. Lymphoma typically shows up in the 10-20s. The highest number that's shown up in the lymph node in question was 5, and it's now around 3. So MD Anderson said this was a good thing, especially if that value continues to drop with each PET scan I get.

So instead of spending 5-7 days here getting poked, prodded, scanned, etc. Mark and I went to Galveston Island yesterday and bathed in the Gulf of Mexico. We're going to hang out in Houston today and are flying home later tonight. I'm looking forward to touching base with my oncologist back in Kalamazoo once she's received the info from MD Anderson and hopefully we'll all be on the same page about next steps. I may go to see someone at U of M, but I think I'll wait until August 28th when my pre-existing condition waiting period with Blue Cross/Blue Shield will be over. Right now I'm pretty close to maxing out my current student health insurance (do not EVER buy Student Health Insurance) that has a $100,000 lifetime maximum per condition. I feel more comfortable waiting another 4 weeks since hearing what MD Anderson had to say about my situation.

Houston... we have a problem. Please help!

So I have an appointment at MD Anderson Center in Houston, Texas on Tuesday. Mark and I will fly there on Monday and then we meet with a Diffuse Large B-Cell Lymphoma specialist. They told me to plan to be there for 5-7 days, and I'm not sure exactly what they're going to do. Right now I'm just tying up loose ends at work so I can be gone for a week, and making sure that they have received all necessary medical records before we get there. Big thanks to my brother for having his friend get me a referral so quickly!

I also have a consultation with the bone marrow transplant clinic at U of M on August 16th, but we'll see if I need it after our trip to Houston. I'm feeling great physically, and feeling a little better emotionally/mentally now that a plan is surfacing for the near future. I'll do my best to update periodically with new information.

New information

My oncologist called me today at 4:45pm and said that after reviewing my file over the weekend, she recommends that we don't just wait around to see what happens. So I will meet again with an ENT and the oncologist at U of M, and may pursue a third opinion from another institution. The concern is that the particular genetic mutations that were identified before I started chemo were complex, and since they haven't necessarily responded fully to treatment, my doctor wants to make sure we act proactively rather than reactively. I had just gotten used to the idea of having a break from treatment for 2-3 months, and it sounds like that may not be the case. I at least will have to spend some time in doctors' offices but it sounds like a good idea to get more information and get more experts involved in figuring out the next steps.

PET Scan #3 Results

Went in to get the results of my first post treatment PET scan yesterday. There is still an enlarged lymph node with "abnormal" sugar uptake in the same spot. It is smaller than it was the last time I was scanned, which was after two rounds of R-CHOP. But it's not gone. So the plan is to wait 2-3 months and scan again. During that time, hopefully the remaining cancer cells will try to divide, and finding their DNA jacked up from the R-CHOP, they will self-destruct. I am definitely disappointed and mildly freaked out, but I am grateful that the lymph node was at least smaller and not bigger than before. My oncologist says we're okay as long as the lymph node continues to get smaller. If it starts to grow again, then I will need to get radiation and/or further chemotherapy. During the next few months I will focus on rebuilding my immune system and my physical strength and wellness. Thank you for your support during this first phase of treatment. I've received countless cards, gifts, and meals without any strings attached. I wish I had the time and energy to respond to each offering, but this will have to do for now. Please know that I greatly appreciate knowing that I've got a team of people routing for me! I hope that I can share better news after my next scan.

Independence Day

Twenty three years ago today my grandfather passed away after being diagnosed with lung cancer. I was in middle school and was a little bit aware that he had been sick, but I probably hadn't seen him since Christmas or so. I have strong memories of his memorial service- especially this one visual of his casket coming out of the floor of the funeral chapel. He was only 70 years old, and his wife, my grandmother, lived for another 22 years after he passed.

It has been two weeks since my last chemotherapy treatment and I am getting a PET scan on July 15th to determine whether further treatment is necessary. I will get the results of that scan late in the day on July 19th. It's hard to believe that I'm already almost done with treatment- I don't consider it over until next Thursday, when I would have been going in for another infusion. I am hopeful that my body will come out of "chemopause" soon thereafter and am looking forward to seeing what my new hair will look like. It hasn't been too hard to be bald over the last four months- the community is generally supportive and I get a lot of "you have a nice-shaped head" comments. It helps that I can pass for a radical white girl who may have just shaved her head to rebel against dominant culture standards of beauty. Also, I have been able to continue working full time and don't look otherwise ill. I decided not to do any non-home work today and of course as I slow down, the fears and thoughts about the future bubble up. Normally I'm too busy to pay attention to those things. Will I be able to get pregnant some day? Will I live to see my own grandchildren? Who knows. I can only hope that I will be lucky enough to have those experiences sometime.

I'm also fighting a mild cold or pre-bronchitis that feels similar to how I felt during round three. I'm taking antibiotics, drinking tons of liquids, and monitoring my body temp (over 100 degrees = phone call to my oncologist and potential ER trip). I spent some time in the garden this afternoon, weeding and checking in on my string beans, onions, kale, and tomatoes. It was nice to be outside, working in the dirt, listening to my body. I got tired after an hour or so and came back inside. I'm looking forward to having more physical energy again- in fact I hope to enroll in a Livestrong program at the YMCA that starts in August. They have free personal training for cancer survivors and I figure that will be a good way to get back in shape. I've stayed pretty active, but I like the idea of doing some weight training and chipping away at my BMI.

As luck would have it, I just took my temperature and scored a 100.2 so got to call my oncologist on a holiday. She is so awesome. We agreed that going to the ER the last time may have been unnecessary and so I've just taken some Tylenol which is all that resulted from that trip. If my fever comes back and reaches 100.5 I'll call again. I'm hoping that won't be necessary. Back to bed now!