This week things have gone from zero to sixty, and I have no idea how it’s already Thursday night. The good thing is that the reason it’s gone from zero to sixty is that we have a plan! And backup plans! There’s solid reason to hope that I could win the happy health lottery and end up eventually okay. I might be able to fight this dragon.
So, let’s go back to Monday.
Monday, my brother-in-law drove Jarrod and me to Hopkins, talked with us over lunch at Atwater’s, and kept us on track through our appointment with my new sarcoma-specialist oncologist. It was a really, really long afternoon, but the appointment went well and all three of us walked out with a great feeling about the doctor.
Dr. Meyer really talked with us and took us through step by step. Funny piece of information I never knew — in most cases, by the time that someone is diagnosed with cancer for the first time, they’ve already “had cancer” for 5-10 years. I let out a crazy loud eep when I heard that statistic. It’s because cancer starts out as one single cell that mutates and it can take a long time for that to build up into a full-fledged tumor. I had not realized it could take that long.
Another crazy statistic? The average lifespan for a patient with stage IV metatastic sarcomas that have spread to the lungs who refuses treatment is usually 6-12 months. I’m getting treated, so I should do better than that. It does explain why my oncologist wants to move forward so quickly. Travel will now be after treatment, but he seems confident I’ll eventually be able to travel again. On Monday, Dr. Meyer presented a plan, and what we do if that first plan doesn’t work. The initial plan is two chemotherapy drugs. The results for this protocol fall pretty neatly into thirds.
- One third of people see no effect on their sarcomas.
- One third see the growth of their sarcomas slow or pause.
- One third see their sarcomas shrink.
I’m sure you can guess which third I’m hoping to be in, although to be honest, even pausing sounds good. Shrinking is really good. If my tumors shrink enough, the doctors can try localized radiation which we know works on my cancer — the spot that received radiation in the fall is completely gone now! Right now my tumors are too spread out in my lungs for them to try radiation — such a wide field at the levels needed would likely destroy my lung tissue.
If I’m in the third that sees no effect, there are two other plans. But for now, I’m focused on Plan A. I’m cautiously hopeful, if still a little anxious and overwhelmed. Since Monday, I’ve had blood tests and an echocardiogram to make sure I’m healthy enough for the chemo drugs. This coming Monday I’ll have fully sedated outpatient surgery to install a double port in my chest through which I’ll receive my chemo. Then Wednesday I go back to Hopkins and start inpatient chemotherapy.
I’ll spend 4 nights and 5 days in a private room at Hopkins receiving chemo. I won’t be allowed to leave my floor but I should otherwise be mobile. They have good wifi and I will be allowed to receive visitors. At the end I’ll be pretty nauseated, but I’ll go home, pet Toby, get a shot the next day to spur the creation of white blood cells, then spend two weeks recovering. In the second week I’m home (so third week of my cycle, which starts on Wednesdays) I’ll get accupuncture at Third Space Wellness to also help my immune system recover. Third Space is doing something very cool with our friend Jonna to help Jarrod and me, by the way. That’ll be public soon.
We then repeat the whole three-week process (without surgery this time). In week 6 I get a scan so we can see if it’s working. If it is, awesome. We repeat and I get scanned in another 6-9 weeks. If not, we course correct and try the next plan. If all goes well, in 5 months I could be on the road to recovery.
In the meantime, I’ll hope. As my brother once reminded me, all we have to do is take the next right step and trust in God. I’m going to try my best to do that. It’ll be easier because of our friends and family. I am still in complete amazement over everyone’s kindness as we struggle with this heavy burden.
My incredible sister is coordinating a ton. I am in awe of her organizing prowess. You can sign up to visit or help at the Betharmy Recruitment Form that Jarrod put together. Help in Silver Spring could be bringing food, visiting, or helping me get out for a walk. I’ll be a little particular about my visitors near the end of each hospital stay due to the side effects that might happen. I’m honest here, but it’s an honesty that is somewhat filtered. I didn’t write this post until I’d had some time to think. I’m okay with you all knowing I’ll be nauseated, crabby, and sleepy, but I’m not sure I’m okay with the idea of all of you seeing that Bethany in person at her worst. I do have some pride.