When I started this blog I told myself I would avoid apologizing for not posting over a long period of time, a short period of time, any period of time. It turns out this was a promise just waiting to be broken, and the time is now.
When I decided to write my thoughts out for all to read, I erroneously believed that this was a selfish enterprise. I would post weekly. Or not. I would be transparent. Or mostly. I would write about cancer and maybe some other stuff; all editorial decisions my own. Or my lawyer's (my husband is a lawyer and my editor for those not in on the joke).
What I have learned is that writing a blog about something so deeply personal is, well, very personal. I feel connected to you. I am honored that you take the time to read my musings. I value your input. I feel committed to you. I want you to know what is happening. I want you to pray, and pray hard, for me. You are #TeamSoderlund, or at least a very large representation of the Team.
I have also learned that blogging is a two way street. As soon as I decided to share about this journey, you joined me. You have been faithful companions. You have reached out to me through various means, to ask how I am doing. You send cards and hats and other fun gifts. You drive me to the doctor. You show you care in dozens of ways every week. And I am a tour guide who fails to tell you a regular intervals where we are going or what we are looking at. I am sorry for having been a pretty dismal tour guide of late.
Ok, promise broken. Apology done. Now let's move on to the news.
Let me first catch you up on what has been happening. The fog came rolling back in a few days after my post about it having lifted. The wonderful thing was that Erick's birthday fell on a clear day. A really clear day. We went to Peet's Coffee together that morning (I have not felt well enough to do this in months) and I drank coffee for the first time in two weeks that day. We went to lunch and I ate part of a hamburger and fries (what?!). And, I had energy throughout most of the day, which (I think) was the only thing Erick -- who buys whatever he wants anyway -- wanted for his birthday.
During this sunny period, we also got some more news from my doctor about the type of melanoma I am battling and what that means for me moving forward. Before reading on, fasten your seatbelt because this is where the unpredictable cancer journey really takes off. One of the major benefits of being treated at a place like UCSF is access to some of the most advanced science out there. One way this benefits me is that the doctors were able to genetically map my specific tumor. This is important because knowing the make-up of the actual type of malignancy we are dealing with can significantly inform and impact treatment decisions.
What we learned is that I basically have one of the hardest-to-treat forms of melanoma. I have a type of melanoma that is not UV related in any way and carries a "low mutational load." The Guru Oncologist explained it this way: If you think if tumors as a surface of a rock you want to climb, mutations are like the hand and foot holds for the t-cells to recognize that the tumor needs to be fought and to latch on to in that fight. Tumors with "low mutational loads" have less "holds" and thus are less responsive to treatment. This news has led my doctor, and us, to think that the treatment I am currently undergoing isn't very likely to work. But then again, we all have times, including my doctor, where we gain some optimism for no real reason and think it will work. We'll know for sure next week when we have the results of a recent liver biopsy and a fresh set of scans.
We also learned that the source of this horrible disease was a blue nevus (mole) that I had removed in 2000 from the back of my head. At the time the pathology came back very unclear, but the surgeon got clean margins so I thought I was in the clear. My doctor said that what likely happened was that the cells were actually transitioning to melanoma and a couple escaped into my system. These cells have literally been hanging out in my body for 15 years. Unfortunately for me, they recently found a welcome place to metastasize in my liver. Sounds unbelievable, but the science does not lie.
The good thing is that when this news came I was actually feeling physically good, which helped me process the news. I am actually thankful to have this information. I do like facts. And, this is a big, important fact. A fact that will hopefully prevent us from wasting time on treatments that are very unlikely to work, such as those designed for types of melanoma caused by UV exposure. A fact that while tough to swallow, gives us something more solid to work with.
The fog, unfortunately, came roaring back in a few days after this all transpired. Since that time I have been very nauseated most days, debilitatingly so. Thanksgiving was the one bright spot because I received an intravenous anti-nausea medication during my infusion the Tuesday before the holiday that was supposed to last for three days. It knocked me out (out as in sleeping with no chance of waking up) for half a day and gave me relief for another day or so. Good enough to get the turkey and mashed potatoes down the hatch and to be somewhat sociable most of the day!
It merits mentioning that the aforementioned infusion was my last of round one of the clinical trial. I have written on what the trial entails in previous posts. You can check one of those out here if you want to know more.
So now, as I mentioned above, we wait for the results. By the end of next week we will have much more definitive information about whether or not this clinical trial is working. We pray it is, especially given the severity of the side effects I continue to endure. Of course, assuming that it's not working and/or not working to the extent we'd like to see, we've already put into place a plan to build a plan B.
On December 16 I will go to The Angeles Clinic (Los Angeles) to see the head of their melanoma program about a clinical trial both he and my doctor think could be the right next step. Sometime that week or the next I will also very likely go to Memorial Sloan Kettering (New York City) for a third opinion.
The priority in this next phase of decision making will be picking whatever clinical trial is most likely to get at my liver tumors. Unless something has dramatically changed, I have A LOT of disease in my liver. Since it's my most involved vital organ, it is the priority. There will be NO consideration anything other than clinical trials. The FDA approved options are not options. Welcome to the world of melanoma where I am lucky, lucky, lucky to be a guinea pig!
This also means that making a decision could be a challenge for us all, medical professionals included. For most of the trials there will be little, if any, published data. Most of the information we can gather will be right from the clinical setting, from the doctors overseeing these trials and from experiments done in animals or in the lab. It sounds a bit daunting. I trust we'll get through and make the right choices. For you praying types, this is obviously an important item to put on your list for the big guy.
That is most of the medical update. There are some odds and ends related to my brain tumor, which I will write more about later this week. This post is getting a bit long.
Thank you for reading, for journeying with me, for your support, for your prayers and accepting my apology for the lack of information as of late.