I am sitting in the chemo infusion center. Round 4. Lower dosages.
And blood work. It all looks good. Most of my regular test are well within normal range.
And what’s more my CA-125 is down to 11!!!! Eleven!!!! This is now in “normal” range of 0-35, down from 3500, between three chemos, one major surgery to debulk, and even the more minor surgery to take a look inside and drain off excess ascites. Whew! Not to mention all the alternative, complementary, holistic things I’ve been doing to heal: acupuncture, lymph drainage, radically altering my diet, herbal and nutritional supplements, counseling, break from work and associated stress, TONS of social support and love, etc.
Which brings me to another relevant topic. We also saw the Naturopathic Integrative Oncologist, Dr. West, this week. She went over some major and unusual blood tests she had ordered earlier in the summer. She’s looking for unusual things in my “terrain” that may explain why my body let the cancer slip through the defenses. Very interesting.
For one thing I tested positive for ANA which is antinuclear antibodies, which is an indicator for possible autoimmune disease. Seeing as how my mom and grandma and others on that side of the family had or have rheumatoid arthritis, that makes perfect sense to me. I was actually more expecting that rather than cancer. In fact I had heard somewhere that a person is less likely to get cancer if they have autoimmune tendencies. However, that is not in fact true. If the body is all busy basically fighting off itself it can let other things get through. Hence the cancer. Cancer is a last resort, exhaustion, kind of result in the body.
Another thing I apparently tested weird for was thyroid function. In fact I have Hashimoto’s Thyroiditis. Dr. West explained it somewhat so let’s see if I understood well enough to tell you. At first it can cause a person to exhibit hyperthyroidism, and then after it all wears out it will go into hypothyroidism. In any case, this is a thing to also be dealt with.
She was very happy with my results so far and very confident that this can be managed as a chronic illness through naturopathy and integrative medicine. I should not follow the typical statistics of how long I’ll last. For me those statistics would say I have a 39% chance of living five years. However I was sitting in the mistletoe infusion room on Tuesday across from a woman who is 15 years out from her diagnosis. And I keep hearing stories like that.
Part of what I have done at Dr. West’s request got accomplished on Tuesday, too. One was to send off samples of my blood to Germany to have it tested to see which strain of mistletoe will be most effective. This was expensive out of pocket but, as Grant says, “We get one chance at this. One chance to get it right.” So, we’re going for it.
I also spit in a tube for 23andMe in order to get further genetic information that Dr. West and Dr. Fields both think will be helpful in learning about my “terrain.” So that got sent off as well. It will be interesting to see the results on that.
So as you may have noticed on the last post, our dear friend Patou has set up a Fundly fundraising site for me/us.
To give you some idea of possible ways you could be helpful, here are the costs of some of the alternative things I’m choosing to do and must pay for out of pocket because insurance doesn’t cover it. I’m wondering if a separate policy could be purchased for naturopathic and integrative treatments. It may be the wave of the future. However, it is not the wave of the present, as far as I know. So:
- Consult with Dr. West as an existing customer: $180
- One mistletoe IV infusion: in the vicinity of $150. She’d like me to do two a week, but we said we can’t do that. That’s more than the mortgage and I’m not working now! Now she’s saying as often as we can afford it.
- Subcutaneous mistletoe injections: $100 for 8 ampoules of mistletoe which is enough for roughly two weeks. (Much more affordable but not quite as effective, maybe?)
- The German mistletoe testing submitted Tuesday: about $800.
- Myers nutritional IV “push”: $60. To be done especially after each chemo treatment.
- Lymph drainage appointment: $40 for 30 minutes. Like above, to be done especially after each chemo treatment.
- Acupuncture: $90. And again, like above, to be done especially after each chemo treatment.
- SO. MANY. SUPPLEMENTS. : They range in price from about $30 a bottle on up to $110 or so. And I’m currently taking 23 different kinds. You do the math. I can’t right now. Too tired. Ok, that’s lazy of me. It probably comes to something like $1,600 in investment but many don’t need refilling every month. So maybe $400 to $800 per month.
- Groceries: They are recommending organic only, keto/paleo diet; therefore, we are shopping at stores where things generally cost more, and for things that also cost more and are less available. So any help with funding the food-as-medicine would be greatly appreciated. One of the nutritionists herself spends more on groceries than on her mortgage, and I believe she lives in Boulder County, so that is probably saying a lot!
- Initial consultation with the oncological nutritionist: $400
- Traveling out of the country to clinics that can do mistletoe-based and other treatments that are not currently recognized in the U.S. The ones we are being directed to are in Canada, 🇨🇦, either BC or ON. Honestly we have not even looked into the cost on this. Could be frightening.
- Monthly pass to the local rec center: $40. More movement will be required of me, especially after chemo is over.
- Also regarding more movement, I would like to start doing dance as my movement of choice. I don’t know yet how much lessons would cost. $?
- My counselor is seeing me pro-bono $0, which is huge. And at some point I would like to be able to pay her for her time.
- And of course, the biggie, continuing my health insurance via COBRA: about $900/mo.
That being said, I think I might be able to start looking for a part time job in September. As I’ve said if I could get my private practice reliable and consistent I’d be most happy doing that. Who knows? It may become my niche to work with cancer survivors.
It may also become part of my niche to work with Grant at his business, Practical Detail LLC, helping to manage the construction flow, with scheduling, estimating, procuring, etc. I have a minor in Construction Management from Colorado State University, so why not put that to use too?
And I’m still waiting to hear from the long term disability folks about whether they’re going to find me disabled enough to pay up. If so, that will help a lot, but it is still only half of my salary at the last job, and obviously now, I have a big extra set of financial expenses. The concern with going back to my last job is 1) hygiene issues and my compromised immune system due to chemo, and 2) feeling like it was stressful enough, and time-pressured enough, that I was operating in fight/flight/freeze mode all the time, which is NOT good for health. The adrenal system crashes, and cortisol runs amok, and the body cannot rest and digest, and it is just bad. And I’m an HSP: Highly Sensitive Person. It makes me a good one-on-one counselor, and a musician, but I’m not a warrior/king type, one who can go off to battle every day.
So hopefully it will work out soonish, that I can get the disability payments, at least for a while, get my private practice going a bit more, and work with Grant, and that I will be able again to be self-sufficient. But in the meantime, any help would be gratefully received.
So many have been helping in so many ways so far, monetarily, and with service, insights, hints, etc.
I am feelin’ the love, oh people, my people! ❤️