Here are some more C words to describe things that have been happening for the last week or two.
First of all, I had another infusion on Tuesday, this time Avastin only. I again fasted for it, and so far so good, not a lot in the way of side effects.
Fasting was much harder this time, as I have given up on keto. One good side effect of keto, if one is trying to lose weight, is loss of appetite. I am not in the “needing to lose weight” camp at this point. Much the opposite really. So the whole looking in the fridge or cabinets and sort of going, “Ewww, nothing sounds good,” is really untenable for me.
So back to a low carb Mediterranean for now. Appetite has returned. So fasting was harder.
And it seemed that especially on Tuesday after the infusion, everywhere I was driving or going or being, I was surrounded by all sorts of food which smelled or sounded great. Montana and I went to the the Denver Museum of Nature and Science for her birthday after my Avastin, and they have an IMAX theater, and people were wandering around with boxes of hot, buttered popcorn and it nearly killed me.
In any case, we saw the Da Vinci exhibit, a health exhibit, and the Mummies exhibit. Most amazing to me was a whole room on the Mona Lisa, and how they have studied, with technology, the various layers of paint. It was fascinating to see how the masterwork had been changed over the years by Da Vinci himself. They even had a reproduction of how it likely looked when it was freshly painted. The colors were so fresh and lovely. It is not like that currently: faded, ambered, somber. Having seen the real thing in the Louvre, the experience of which is honestly sort of a letdown after all the hoopla around it, I found this display extremely interesting and far more moving. Worth the price of admission, for sure.
- Dr. West, FABNO: I saw Dr. West Monday. She was quite happy with my blood work and the progress I’m making on some fronts. She is thrilled about me going to Canada.
- LymphWorks: I have had one lymph drainage appointment and will have another Friday. I elected to do it with a combo massage, lymph drainage, essential oil treatment. It is a lovely experience, and apparently helps the body detox after chemo.
- Dr. Johns: I saw Dr. Johns recently as well, to re-test for the bladder infection. It was clear, at least with a standard culture, but I still have discomfort so I have contacted Ruth Kriz about her methods for diagnosing and treating cases of “interstitial cystitis” which she has found has always been due to an underlying infection. More as events warrant.
- Matta: Grant talked me into a colonic hydrotherapy session, after chemo, as that is also supposed to be a good detox thing. It was an interesting experience and not quite as bad as I’d thought it might be. I will be seeing her again at the end of the month, after she gets back from her home country of Iceland.
- Jo: I saw Jo Monday for an oncological exercise physiology session. She thinks I’m doing pretty well. She is a great resource, too, with years of experience.
- Remission Nutrition: I will have a follow up with Jen there tomorrow. I had decided earlier on that I didn’t necessarily need to pay them big bucks, but Dr. West has encouraged the follow up, and we’ll see if they can work with me around not doing keto. Dr. West says that intermittent fasting, or a fasting mimicking diet, has the same effect.
- Yoga Therapy: I also have an appointment tomorrow for a consult with a yoga therapist, to discuss how it would work, about “getting more into my body” as I’m being advised. We’ll see.
So it’s a go for me to go to the Cancer Care Centre at the Integrated Health Clinic in British Columbia. Due to the costs, I was assuming I’d go once, after one chemo, but Grant is adamant that I do it after the next two chemo rounds, and we’ll just figure out how to pay for it. So the goal is get through treatment, keep all my good health habits going, keep my blood work where it should be, and stay in remission, and get back to money earning in a healthful and wellness-ful way.
I’ll be there Aug. 20-25, and Sept. 17-22. It will encompass three loco-regional hyperthermia treatments and one whole body hyperthermia treatment, as well as intensive mistletoe and other infusions. I should have some time and energy to do some sight seeing though as well, so I will report back. I’ve heard it is so beautiful that I may not want to come back. That is a distinct possibility.
There is going to be a women’s cancer retreat up at the Shambhala Center in Red Feather Lakes, Colorado the first week of September. I had applied for a scholarship to attend, and got it! So I have a full-ride scholarship for that week. I’m hoping it will be a good time of addressing emotional and spiritual aspects of healing. If you would like to support Courageous Women Fearless Living, you can donate here.
I got word yesterday that my application for SSDI has been awarded. I don’t know exactly what that means yet, more details forthcoming. But I do know that SSDI comes with Medicare eventually, so I’m one step closer to Medicare for All!
I have parts up about it all though. I wouldn’t have applied for it except that UnitedHealthCare‘s Long Term Disability (LTD) policy, which I had through my former employer, and which has been a godsend, requires it. Somehow the policy is written that whatever retroactive lump sum I will get from SSDI, at least some of it needs to go back to United to pay them back. That seems a bit shady and uncouth to me. But there it is. There is a company that United recommended I use for the application process, Social Security Advocates for the Disabled, which has been helping me and will continue to help me through the process of figuring this all out, for a fee of course. So we’ll see what this actually works out to being. I’m just hoping it won’t be less than what LTD is paying.
In any case, I don’t like the words “disabled” or “disability.” I don’t want that to be my new identity. I want to get back into remission, stay there, and get on with life, and back to work. I know SSDI has work incentive programs, and safety nets in place if one does go back to work. I’m grateful I learned as much as I did while being a vocational rehabilitation counselor. Who knew at the time that I’d be needing my own training in that?
Sunday Grant and I headed up to Wyoming for a hike at Curt Gowdy State Park. We really like it there, but shhh!! It needs to stay a secret! We took the dogs and so they also had a good hike and were completely spent afterwards. Getting away like that is good for all sorts of health and wellness.
I’m learning some new CAD (computer aided drafting) programs, in order to help Grant with his business. It’s a good thing we both have interest in construction, as it is helpful to him and to me, for me to work a bit for his company, here and there.
We had the opportunity to host my colleague Lynn and her daughter Julia on their way to deliver Julia to grad school. They were traveling from CA to IN and spent one night with us. I met Lynn at IFS Therapy Level 1 Training. She and her family are dear, dear people. We completely enjoyed having them here, but it was far too short! She suggested that she could “sit with me from afar” in meditation and prayer while I do the whole body hyperthermia, which I’ve heard is a difficult experience. I gratefully accepted!
So that’s all the news that’s fit to print at the moment. Must get on with my day. But I do want to say one last thing: I’m being aware that it is important for me to keep my focus on the Staying C-ful part rather than on the Big C part. Maintaining the 8 Cs is helpful and healthful. Maintaining focus on the Big C is not. Creating an identity around it, is not. Visualizing and creating the health, wellness, and life I would like to see is much more powerful and more important. Many writers have discussed it. It is not woo-woo. It is science, that positive visualization works. So I’m working on implementing that too. The placebo effect is real, and the nocebo effect is real. Belief that something will create health is real. Belief that there is no hope is real. They are self-fulfilling prophecies. Therefore my thoughts are important. My visualizations are important. I need to guard them carefully.
3 thoughts on “More Cs”
Thank you for your posts. There is always information that I personally tune in and read more about. I’ve completed my first cycle of Taxol/Carboplatin with 5 more to go (once every 3 weeks). I wanted to ask what is the best way to get in touch with that Canada clinic that you are scheduled for hyperthermia? I am very interested too. Do you have any idea how expensive it would be? Also, do you have plans to be on PARP inhibitor after completing your chemo? Sorry for all the questions. I am also figuring out the way to get into the permanent remission state and you are the great resource.
And yes, me too I cannot do keto…. But I am on intermittent fasting as I said to you earlier. I skip breakfasts. It works well for me.
I’ve recently read the book “You Are the Placebo: Making Your Mind Matter” by Dr. Jose Dispenza where the Author talks about healing by thought alone and the great power of mind… I found it pretty interesting 😊
As always wishing you the best!
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The website for the clinic in Canada is https://www.integratedhealthclinic.com/cancer-care-centre/ . They took all my information, and proposed a course of treatment via a teleconference call. And then they sent an estimate of the cost. So I think it would depend on your situation.
Regarding PARP inhibitors my gyn-onc thinks I will be a good candidate for that so yes I’ll be continuing with those after this round of chemo. Because I’m HRD+ they should work well he thinks.
I’m liking Dr. Dispenza’s work. I have his Placebo CD meditation, as well as his book Becoming Supernatural which I haven’t finished yet. In it he talks about the neuroscience around the body responding directly to our thoughts so being mindful of our thoughts is very important. Dr. Lissa Rankin also discusses that in her book Mind Over Medicine.
Best wishes to you as well!
Thanks for writing. I had been watching anxiously for your update. Glad you are still in fighting mode and going to give Canada a shot.