The Cancer Caregiver Life

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In just over a week, my husband and I will be going to The Sanoviv Medical Institute for three weeks. I will be updating F&F (friends and family) via this blog on what goes on there. If you just happened upon this blog because you’re searching at 3:00 a.m. for the blogs of other cancer caregivers – well, that’s been me for a year. This is sort of a “precursor” blog to the set of Sanoviv blog posts that will follow – but here’s a bit about my journey.

For more information I can recommend a lot of books and medical articles, but The Emperor of All Maladies is fascinating as the “history” of cancer, going back to ancient Egypt.

We found out about my husband’s bladder cancer about this time last year. I won’t go into the details, but he had been having issues that he hadn’t discussed with anyone, so by the time it was discovered, the tumor was big. After we received the Western medicine protocol, I immediately contacted Michael Broffman at the Pine Street Clinic. Broffman has been in the cancer “arena” for decades and so not only has a big list of what specific oncologists “will and will not do” when it comes to supplements, non-Western treatments, etc., he also (if your oncologist is on his “list”) can help you with how to talk to your oncologist about your situation and your potential desire to use integrative treatments.

Unfortunately when I finally “conned” my husband into seeing Broffman, he was too late stage to get into a couple of clinical studies (one in Italy, one in the U.S.) that Broffman was tied into. He gave us a number of “homework assignments,” one of which was to watch the last 1/3 of the video The Science of Fasting (starting right at about 39 minutes) about Valter Longo. (NOTE: Longo now has his whole “schtick” of supplements, etc. – Broffman didn’t recommend them, so I can’t speak about them.)

Broffman explained that during my husband’s chemotherapy, we needed to follow Longo’s fasting protocol (“FMD”), which closes down more “healthy” cells during the chemotherapy.

Chemotherapy’s “job” is to kill any cell in your body that is splitting while you are getting the treatment. So stopping “healthy” cells from splitting is a great idea. The reason that folks lose their hair (by the way, cold caps don’t work, don’t waste your money), get mouth sores, get neuropathy, etc. is because hair/nerve/mouth/stomach cells split often – so if you’re getting chemotherapy when one is splitting, you’ll kill it. Fasting convinces your “healthy” cells that it’s winter – when they should not be splitting so much. But cancer is stupid. (Bwa-ha-ha-ha DIE M***** F*****!!)

Cancer eats sugar and insulin acts as a “power up,” turning it into the Incredible Hulk. (Yes, this is overbroad, but this post can’t be 92 pages). Since this is the case, during chemotherapy in particular, one needs to keep carbohydrates to a minimum. The focus of Broffman’s supplementation involved supplements during the chemotherapy to help with the poisoning, then ones after the chemotherapy to help get the toxins and dead cells out of the body while staying in ketosis, and then ones to “rebuild” before the next chemotherapy cycle.

This involved a very elaborate calendar for me, the Caregiver, containing which supplements to give at what times. It also involved foods that would help. (Osso Good’s AIP-compliant bone broth, with the Chinese herbs already incorporated, was recommended and super helpful.)

The sad thing is that chemotherapy units – now made as comfortable as possible with personal TVs, lounge chairs, acupuncture and social workers – are awash in crappy, high carb food. Everything from “nutrition bars” to ice cream to the beloved Saltine cracker for nausea. The nurses were horrified when my husband would tell them not only that he was fasting, but also that he was coming into chemo on a fast. Everyone else is munching away on ice cream, pizza, cookies, Saltines, or whatever else made them feel better about being hooked up to a gigantic bag of poison for hours and hours. And every munch feeds their cancer.

We had provided the medical articles to our oncologist with respect to the fasting, so he had written in our file that we shouldn’t be “forced to” eat. Broffman had looked our oncologist up in his notes, and explained to us that – while he resembles “Bill and Ted’s Excellent Oncologist” with his spiky hair and vocal fry – the only way to get this particular doctor to agree that we could do what we wanted to do was to provide him with Western Medicine articles that showed that while a protocol (like fasting) might be difficult to do, it actually works. Most articles, in fact, stated that the fasting protocol worked better than anything else that was in trial; however, folks just didn’t stick to it. “Give me that Rocky Road Ice Cream, Ma, I have cancer, I’m on chemo, and feel like trash! And hand me a Saltine while you’re at it.”

I have, quite literally, a novel that I wrote after we saw Broffman, as well as the articles he recommended. If you’re interested in it, let me know in the comments. It talks through the entire Pine Street Clinic visit, and goes into great detail about the Phase I, II, III protocol during chemotherapy. We also re-visited Broffman a month or so ago, and I have another 10 pages of notes from him regarding where we are now.

My husband’s surgeon told him that there was basically “no way” that his bladder could be rebuilt after the surgery, but we did everything that was recommended by Broffman to get the best possible result, and the urologist’s assistant called me during the surgery to tell me that they were, indeed, able to build him an internal bladder. The whole surgery story and me terrorizing the poor intake nurse is for another day.

My husband was cancer-free for six months, then a tumor showed up in each lung. One was in the middle of the inferior lobe on his right side (three lobes on the right side, two on the left). The one in the left lung was (cue Louisiana-accented thoracic surgeon) “Snuggled r’aht up next to his ay-OR-ta” – so – impossible to operate. While the tumor in the right lung could be cut out either by cutting a “wedge” out of his lung or taking the whole lobe, the left tumor couldn’t be dealt with at all.

I asked the surgeon what he’d do and he laughed, saying: “Well, you go to a barber, he’s not gunna tell you not to get your hair cut,” but then we talked through what would happen if we did the “cyberknife” treatment that he was recommending on the left side to the tumor on the right. He said that the only issue would be the inability to biopsy the tumor . . . but in doing the surgery, my hubby would be left with 2/3 of his right lung. We opted to go find out about what “cyberknife” treatment was all about.

After discussion with the Chief of our various options (my new girl crush…), we decided to do SRS (stereotactic radiosurgery) on both tumors. As she reiterated, the downside of not being able to do a biopsy is the inability to see if this is the bladder cancer moving into the lungs, or if it is a “new” cancer (lung cancer), because the SRS obliterates the tumors. SRS is really quite amazing technology – I have a bunch of notes on that, too.

Lung cancer is a tough cancer – I had a friend die of it who had never smoked a day in her life, never lived around smoke, etc. When you tell someone that you have lung cancer, they look down their nose at you as if to say “Well, if you hadn’t smoked 12 packs of cigarettes a day for 10 years, you wouldn’t be in this position.” Just because >75% of lung cancers are in smokers doesn’t mean that it’s 100%. That said, we wouldn’t know whether the cancer was now lung cancer or was just migrating bladder cancer, as we would be blasting the tumors to smitherines.

A friend of mine’s family is tied to Sanoviv; that is how it was originally recommended. I had tried to get my hubby to agree to go to do their cancer-related protocol after his bladder cancer surgery. He had felt that the tests showed him to be ‘cancer free,’ so why spend all that money? As soon as the cancer was back, he agreed to go once the SRS treatment was completed.

We will be at Sanoviv, doing their Cancer Program, from mid-June to mid-July. The program is full-immersion and quite pricey, but we checked out two other integrative cancer treatment hospitals (one in Europe, one in Israel) and in actual fact, this program not only involves less travel but winds up being less expensive than the others we researched. I’ll be going too – a caregiver gets to go for $100/day, which includes all non-treatment related offerings (e.g., meals, the pools, room, etc.). HERE is their general description of what to bring/not bring/etc.

Every day apparently starts with meditation on the cliffside overlooking the ocean, then “grounding” on their chemical-free lawn in your bare feet, and yoga. You are given your schedule the night before at dinner and walked through it with your doctor, so you know what’s expected. While hubby is at treatment, I am expected to go to workshops on subjects such as functional nutrition, supplementation, how to transition from Sanoviv, and the like. The treatments are not only physical but also mental – you can see some of that if you poke around the Internet and the Sanoviv Programs.

As I understand it, we will be in two different bedrooms with the same “sitting room,” because the program involves detoxing. That means no wife in ze bed! :-) This also means that you show up with underwear, a bathing suit, and a sun hat – everything else is provided to you. Yes – shampoo, conditioner, soap, toothpaste, clothing, shoes (Birkenstocks), socks, etc. Really! No makeup, no nail polish (just took mine off in fact), only one of a couple of sunblocks (they sell it, or you can bring it), no plastic or plastic bottles, even if BPA-free, and – yes – no electronics.

Your “sitting room” has a balcony overlooking the ocean, a mini-trampoline, infrared sauna, chi machine, and wall racks to do stretching. You’re expected to do at least 15 minutes of “rebounding” on the mini-tramp daily, plus use the infrared sauna and the chi machine. The TV in the room only has two channels – I believe it’s Discovery Channel and National Geographic Channel – because they want you to detox from that, as well.

There is a separate room at the facility where you can use your/their computer, but it is the only place on “campus” where wifi is allowed, as it’s considered something that you need to “detox” from. This will be interesting for me, because I will need to work when hubby doesn’t need me. As I was writing up this blog, I actually emailed our Admissions guy to ask about this, and he said that if your computer has “an Ethernet port,” that you can connect in your room. Of course, most newer laptops have USB 3.0 ports /HDMI ports, but no Ethernet port. While hubby was researching getting an adapter so that I can at least do some work (and particularly teleconferences, of which I know I have to attend at least one) outside the “computer room” I happened to mention it to a client – the next day, an Amazon package showed up, with 2 adapters, and a long and a short Ethernet cable! I had to laugh at that!

I have been reading a number of write-ups on Sanoviv, though the ones that I can find are all written by folks who went for a one-week “cleanse”/detox-type protocol. So that’s why I felt that I should try to blog about what happens during the cancer program. HERE is an example, that shows you “what you get” at Sanoviv – HERE is another. HERE is a third.

That said, there isn’t one write-up about their fitness center! They have “Zumba” classes and “salsa” – but nothing “Strength-ish.” I was told by the Admissions person that there are “a few ellipticals and some dumbbells, but not heavy.” Since I have been working really hard on strength and HIIT training, my gym owner (bless him) crafted a workout for me for the time I will be gone. I will be bringing a TRX, some resistance bands, and an EmPack and 3 reservoirs. So we’ll see how that goes, too!

The Sanoviv diet is basically plant-centric, with no caffeine, dairy, soy, sugar, toxins, alcohol, corn, gluten, etc. They have a garden and a lot of what you eat is grown there. They also have organic/raised chickens and eggs, plus fish at some meals. (I’m allergic to fish, but that was noted in my intake.)

This will be a big difference for us – and we’re drinking all the wine we can before we go (ha ha – um, kinda joking). We eat very clean and pretty “primal” – organic veg/fruit, grass-fed meat – no soy, corn, sugars, gluten, etc. – but we know that our portion control is lax. We do our best to eat in a 12 hour window, though Broffman had told us it would be better to winnow it down to 10 (and that’s Sanoviv’s system). We also have meat every dinner – I’m looking forward to learning some new recipes (and have been boning up on them also through the Thug Kitchen cookbooks!)

I mentioned to Admissions that, because of my migraines (written about before), I have 2 cups of coffee a day. They are vasodialator migraines – caffeine helps. He said I would need a prescription and to take it as a pill. So I talked to my doctor, and she told me what to buy, which I did. Any meds that you take have to come in their bottles (not in a weekly/daily pill container), and you’re not to bring any non-prescribed supplements.

(Speaking of supplements and nutrition, I am binge listening to The Funk’tional Nutrition Podcast, because a client of mine was on it. They’re GREAT! If you’re a ‘Nutrition Nerd’ like I am, they really know their stuff.)

So that’s about all I have to say in this “introduction” to what we’ll be doing from mid-June to mid-July.

Work has been insane recently which is great for my wallet but tough for getting prepared to go. That said . . . I mean, how prepared can you get when you are just packing undies and a hat? :-)

What are my expectations? I expect that hubby will be pretty sick the first week (we were told as much). I expect that we will both likely lose some weight since we will be portion-controlled and won’t have, oh, say, cheese. :-) I have set a goal to do the workout that my trainer has given me each day, whatever that takes. I plan to take notes and then blog each day or at least every other, and write up what’s going on so that there is a comprehensive log of it all. I plan to check work email a couple times a day, if the building that has the “computer room” isn’t too far away and the wifi is working (apparently somewhat dicey).

If you’ve gotten this far, bless you! You are either a devoted F&F, or perhaps a previous blog subscriber who didn’t unsubscribe when I went “radio silent” for about a year. (Now you know what I’ve been, sadly, up to. Caregiving takes every free moment, that’s for sure.)

I’ll be reading all the Comments when I get on the computer at Sanoviv. So if you have any questions, etc. let me know – or if you just want to say Hi! As per the whole “no electronics” thing, I’m bringing a couple books (yes, paper), but don’t plan to access Instagram, Facebook, or even personal email while gone. We’ll see how THAT goes! So if you’re in that “F&F” category, keep me company by commenting.

Onward!