Let’s just dig right in, shall we?
The clinical trial is off and running and last week was the first in October I wasn’t in Portland. I will be there next week and the week after, and then my schedule moves to an every-four-week-visit timing.
This first month requires more travel because I’m getting 2 priming shots 3 weeks apart. This gauges reactions (if any), but it’s still the drug (DPX-Survivac) I’ll be getting throughout the study. (Here is the drug information straight from the study sponsor’s website.)
Sidebar: DPX-Survivac has already received “Orphan Drug Designation” from the EMA (European Medicines Agency) and the FDA as well as “Fast-Track Designation” from the FDA. What does this mean exactly? The results are so promising, the FDA is making it accessible to patients as early as possible. In the case of my participation in this trial, I’m (hopefully) going to give further evidence that good outcomes are possible with this treatment.
How do you feel?
I take a form of oral chemotherapy (very small dose) that augments my immune system to allow the DPX-Survivac to do it’s job. (I take it for 7 days 2x a day and then get 7 days off.) With that comes the usual nausea and fatigue and lowered blood levels. I’m knocking on anemia’s door once more, but learned that OHSU is more than comfortable administering EPO to help manage that (cyclists reading will know why this is funny), in addition to blood transfusions. The main symptom of the drug injection is site irritation — I had a bit of a red rash about 2″ x 2″ and it was very tender (think tetanus shot, if you’ve ever had one) for about 4 days.
Not so bad right? Yes, and yet…
While those are the trial-specific symptoms, prior to receiving my first injection on October 3, I began having symptoms of my cancer. Which is — in a word — TERRIFYING. Three months with zero treatment meant my lymph activity started to kick up. The worst of it is in my left groin lymph. I also have a nice little marble in my clavicle and swelling in both my armpits.
This is all in line with the results of my imaging and the doctors keep telling me that they’re “really small” so I have to trust that statement. But after almost 4 years of no physical symptoms that weren’t caused by chemo, I’m having to navigate a new fear. Somehow, this makes it feel more real. I’ve been reading this Elizabeth Gilbert post often to remind myself that fear is part of my spectrum of emotions and I am practicing being at ease with it.
Wow, that’s a lot of travel. How does that work out financially?
Money is a funny thing in our society isn’t it? And healthcare adds another layer of complexity. I’m happy to explain my particular situation, generally. The first thing to acknowledge is I have A LOT of things working in my favor. Not least of which: I am with my husband’s insurance provider, and the backing of 15,000+ employees means I get access to really great care.
Sidebar: This is not the case for too many people in our country. Just watch the first episode of Diagnosis on Netflix and see how a 23-year-old is already so deep in healthcare debt she’s considering filing bankruptcy while still seeking answers to her ailment which has gone undiagnosed for 6 years. WTF.
My insurance provider is paying for my study treatment. The study sponsor is paying for my accommodations and travel. My out-of-pocket costs are for meals.
Let that sink in for a minute, because in the American healthcare system, this is a GIANT FUCKING UNICORN of a situation.
I only have to pay for meals. (And in Portland — a foodie mecca — this is not a difficult thing to enjoy.)
Let me repeat that: meals. That’s it.
Now, don’t get it twisted. We already paid a fair amount of money up front to get into the trial. I have since submitted those costs to the study sponsor for reimbursement. We are privileged to have the financial ability to afford this. For most Americans, this would be the first and final barrier and that would be the end of that (more than 60% of Americans can’t afford a $500 “emergency” expense).
Do you need company in Portland?
As of right now, all the support I need in Portland is handled through December. We go on vacation (YAY!) in late-November/early-December and the visit I have upon getting back will give us initial results of the treatment thus far. Obviously, K will join me for this trip.
But, if I continue with the trial in 2020, we can chat then.
What will the initial result outcome mean?
There are A LOT of potential outcomes and then even more paths from that outcome. So it’s too early to give that consideration right now.
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That’s the latest and greatest from my neck of the woods. I encourage you the check out this information about the Knight Cancer Institute & OHSU.
I know I’m in very good hands, but I’m still managing a lot of anxiety.
A practice my therapist gave me is to tell myself the truth when I start telling myself stories based on the past or completely made up by my anxious brain. So that’s what I’m doing. I keep reminding myself what is true and real. To be at ease with the unknown. To be at ease with my fear. Some days are easier than others, but that’s life. If it’s not one thing, it’s another.
Much love to you all and many thanks for all who continue to reach out. XO