Tag: chemo brain

On Top of the World with First Descents: My 1-Year-Outta-Chemo Cancer-versary

On Top of the World with First Descents: My 1-Year-Outta-Chemo Cancer-versary

Life after cancer: Young, fancy and free A year ago last Wednesday – August 23rd – was my last day of chemo. The first step on the road back to normalcy. My unofficial return to freedom, to life. To life after cancer. My last day […]

Life After Cancer: A Masterpiece in Progress

Life After Cancer: A Masterpiece in Progress

Cancerversary: Reflecting on a year out This month will mark the one year anniversary of finishing chemo. Tomorrow marks the one year of finishing round 5. When I think back on a year ago, I think about the whirlwind I was in the midst of. […]

The Cost of Cancer: Part 1

The Cost of Cancer: Part 1

Cancer is expensive. That’s a fact. A few people have wondered about my use of funds on the yoga retreat I went on in September. This did cross my mind when booking the retreat – how it might look. The fact is, I didn’t use the donation money to fund it. I earned that money over the summer, between treatments, on the few days I had energy, and had plenty of miles to cover the flight (still have a lot more). I only booked the retreat once I knew this situation was in place. Those trips I took out to the Hamptons, aside from my sister’s Bachelorette, were for ‘business.’ I earned enough to cover the cost of the retreat and got to spend time in my happy place. Win win win. It was certainly lucky to have that cushy job fall into my lap this summer. But I’ve also experienced a little bit of bad luck, financially, along the way. Since so many people in my network have been beyond generous in lending support, I decided it would be best for me to be as transparent as possible about cancer finances. So here we go.

I had two goals when I received my diagnosis:

  1. Survive.
  2. Get healthy in time for my sister’s wedding, so she could have the beautiful day she deserved and our family could celebrate without the shadow of cancer hanging over us. We all needed some good news. It wasn’t just my own life riding on a successful outcome. I had to heal the family pattern.

All of the decisions I made over the course of my treatment were in the service of those goals.

And here’s the reality: there is no clear roadmap for cancer. The medical cancer establishment operates largely on guesswork and marginal success rates. They throw whatever they have at the cancer to kill it, but it is not targeted, and it causes a lot of collateral damage along the way. It’s kind of like dropping a nuclear bomb when you want to target one building. And evidence shows that treatment itself can very often cause secondary cancers. This little anecdote from my diagnostic process sums up this status pretty well in my opinion:

Two days after my PET scan, the Chief CT surgeon (who operated on Bill Clinton years back, according to the NYT, so yeah he’s pretty good and kind of a big deal) sat there and told us this was likely not a job for him. The scan had showed activity – and a substantial amount at that. It would be impossible to identify what it was without a biopsy; however he offered his best guess among the options suggested by the scan analysis: lymphoma. My parents and I sat there stunned. Then my mom ventured a question: But how does this happen? She’s so healthy! He sat there, slumped a bit in his chair, slowly shaking his head. With a slight shrug he said, “Honestly, we have no idea.”

His response continues to haunt me. If medical professionals really have no idea how it happens, do they really know the best way to heal us?

I was lucky. My treatment works, and the prognosis was excellent. But as with anything serious in medicine, there can be complications. Chemotherapy drugs are basically poison (although I tried my best to think of it as my magic elixir), and many people have reactions to them, often severe. In fact, about half the patients receiving my protocol react to the immunotherapy drug, which can include serious heart complications. I myself I did have some pretty severe reactions in the diagnostic process alone – my heart stopped, I stopped breathing, and I turned dark purple after the bone marrow biopsy. So, yeah, you never know. And even though my treatment is effective at getting rid of the bad stuff, it does a number on lots of the good stuff. Treatment works, but I’m not sure ‘healing’ is the appropriate term for it.

So that’s why I did so much research on my own. And that’s how I found so many resources on natural healing. My hunch was that if I walked into these treatments already not in great shape, treatment would just make things that much worse. However, if I cleaned out my system, my body would likely be able to tolerate the toxic drugs and toxic waste created by the drugs – it’s all about toxic load on the body. I was nothing if not determined to get through it in the best shape possible. So I took action. And I wound up not having any reactions to the drugs themselves – it could be that my body would have tolerated them perfectly fine without the other alternative therapies, however I believe they did make all the difference. These efforts did not come free, though.

The Alternative Approaches I Took

First, everyone knows that eating clean and healthy in this country is wildly expensive. Organic costs. But it is truly the most important thing if you want to properly cleanse and fully heal. I could write a whole book about this, but really there should be no cutting corners on this front when you’re dealing with an illness like cancer. We also had to cancer-proof the house as much as possible: cleaning products, laundry products, and beauty products should all be clean. Water should be clean. These products, too, add up.

In all research I came across so much information about the healing powers of supplements, so I ordered a bunch. At the recommendation of a doctor friend, I also hired an integrative nutritionist, with whom I had several sessions, because the nutrition stuff gets confusing and complicated and there is so much contradictory information out there. Of course, all of my supplements have to be clean too. So anything I ordered had to be higher quality. It turned out my oncologist wanted me taking nothing except for the allowance of probiotics between treatments in case these things should interfere with treatment. We found elixirs that technically did not fall under the category of supplements, so I ordered those. My oncologist would probably think I’m crazy, but I’m pretty sure they worked. I took them religiously at the beginning of treatment and not only got through rounds 1 and 2 extremely well, but my scan showed massive reduction in size and activity from that first scan.

I’ve also worked with alternative doctors who apply the methods and theories of kinesiology. After receiving recommendations from cancer survivors to this end, I met with one back in early April before treatment began. I saw him a couple times and he put my on Vitamin D supplements and did some interesting things with my body, which supposedly release past physical traumas and injuries. I do think he helped, but after a couple sessions my gut told me this was not something I should continue. My nutritionist recommended another alternative doctor, whom I’ve seen three times now, the first two each before rounds 5 and 6 of treatment respectively; the last a few weeks after round 6. He applies magnets to the body in highly specific ways to draw old infections out of the body. Does this stuff work? Well, after a rough rounds 3 and 4 due to my infection, I bounced back with a vengeance in rounds 5 and 6. Generally patients get worse throughout the course of treatment. Can we know for sure? Most certainly not. We don’t anything about any of this with absolute certainty. But we can trust the evidence and trust our instincts.

Before I got sick – last December – I also made the decision to invest in myself. I didn’t know the extent of what was going on in my body, but I knew something wasn’t right. My life was not in alignment, so I took the plunge and signed up for this nine month mentorship program that began in February. It was a substantial investment, but at the time I had a steady income and I figured the monthly payments would be something I could just keep up with – I figured my health and happiness were worth the investment. It was a sunk cost. Was it worth it? Well, it is uncanny how the stages of the program have mirrored my progress throughout this whole process. I have fallen a bit behind on the coursework itself, however I spoke with my mentor last week and the fact is I have actually gained tremendous insights and made really substantial progress since the start of the course. It’s kinda like therapy on steroids.

Then there’s the meditation course. Was this worth it? Well, I have maintained my twenty minute morning meditation throughout the summer, every morning, even when I was at the hospital. I confess I have been less consistent with the twenty minute afternoon meditation, but in the beginning I kept up with it and I truly did notice a difference. My morning practice continues to ground me and is now the only way I can start my day on the right foot. PS – I cut coffee cold turkey based upon what I read back in March (caffeine and acidity). With my morning meditation, I do not miss the coffee. Yes, the smell and the taste and the comfort of the mug I do certainly miss. And I have indulged myself with a cup on a few occasions. But I do not require it to lift the fog; these days there is no morning fog. Chemo brain fog, yes, but that’s different. The benefits of meditation are measured and real, and it is a practice that I can take with me for the rest of my life to destress and stay balanced, and make sure this stuff never comes back.

I’ve also had multiple forms of bodywork done, including reiki. Everything I have read discusses the harms of stress, so releasing stress and tension, as well as pockets of toxins in the body, is so important. There are special massages called lymphatic massages, or oncology massages, where the aim is specifically to get things moving and detoxing in the body, because the toxicity load on the body is so high from treatment. There were points between treatments when my back was so tight that I was in constant pain. Massage therapists comment on how tight my back is. It got especially bad when the bone pain kicked in. Oh and PS – no bone pain for the last two rounds. Hm.

So did these alternative therapies work? Well, I’m here. I survived. I’m in remission. I got through it with few side effects. In my last round of treatment at the hospital, the doctors and nurses continually expressed shock at how well I was doing. I not only walked down the aisle at my sister’s wedding, but I also danced a good portion of the night. My stamina for dancing wasn’t quite up to my normal standards, but I was out there, all night, having fun. And, more importantly, everyone there could truly celebrate. And now, between all the tweaks I’ve made to my diet and the other healing I’ve been doing, to be honest, I feel better than I have in a REALLY long time. So again, did it work? And, was it all worth it – worth the cost? I know my answer, but I suppose you can make that judgment call.

Summer Activities

I cannot sit here and recap my entire summer, nor detail every expenditure. But I will list a couple of the wonderful – and free – opportunities and experiences that came my way, because a wonderful network like I have lends support in many ways. In June I was able to spend a couple days down at the Jersey shore at Mary’s place by the sea – a wonderful place that offers a free retreat-like getaway for women going through cancer complete with yoga, massages, reiki, hypnotherapy, nutrition counseling and cooking classes… all for free. I went sailing one day on my dad’s friend’s boat, because it was a beautiful day and when you have a boat you want to invite people to go out sailing. So he invited us and other close family friends. I’m lucky my dad is friends with someone who has a nice sailboat.

As I mentioned before, the jaunts out to Southampton were actually for business not pleasure – that worked out because I already had a relationship with these clients, and given my situation I could only agree to work with them under a specific arrangement, and they were very fortunately happy to accommodate. This funded my yoga retreat. I have also accrued a substantial amount of miles, so I was able to use my miles to pay for my flight to the retreat. And since it was the low season and everything was cheap, I upgraded to business class. Because it cost me nothing. And because I was nervous about germs. And I still have a lot of miles left. And then Treatment ended and September rolled around, and it was my birthday. So people, like my family and friends, treated me to dinner and a celebratory drink here and there and nice little things like that. And I got a little birthday check from my Nana which covered incidentals on my retreat. So this is all to say that all those fun things I posted over the summer – on those wonderful days when I was actually feeling good – many of them cost me nothing. Because people are generous and kind.

Yoga

So then comes the issue of whether the retreat was really the wisest use of my money. Well, for starters, a yoga retreat is more than a simple vacation. You obviously do yoga, and on this one we did quite a lot of it – I’m not entirely sure exactly how much but between 3-5 hours each day. There was plenty of asana – the physical stuff – and that in itself is wonderful for any cancer patient (any person, really). Movement, breathing, using your muscles – I can’t go into the details of all the positive benefits here, but there are many. We also had super healthy food prepared for us each day – morning smoothies, vegetables fresh from the garden, healthy desserts and all. Add to that the sunshine, relaxing atmosphere, positive environment, and a wonderful community, and you have a recipe for a very healing and uplifting experience. I went swimming in clear blue water- I hadn’t been able to go in the water all summer. On the days when I was stuck in the hospital I would dream of the beach. And, of course, I love yoga. I can’t tell you how many times I read in all the literature how important it is for cancer patients to do things they love, to do things that make them happy. Well, I was super happy on this retreat. Which is everything. But on top of all that, we went really deep on this retreat. At the end of each evening practice, we did these exercises, which basically expanded on journaling, that turned out to be the best part of the retreat for me. Because we did some really deep healing work.

I’ve been practicing for over 8 years, have three teaching certificates, and have never gone on a yoga retreat. I’ve never treated myself to this experience. And let me be clear: there was nothing luxury about the resort. It was perfect for a yoga retreat, but I was not staying at anything close to a five star resort. And here’s the thing – there are, in fact, many organizations who send cancer patients on yoga retreats and similar retreats of that sort, simply because it is so healing to have a positive, relaxing experience after going through so much. And because yoga relieves stress – I’m pretty convinced by this point I developed lymphoma because of stress. Going through treatment is stressful. So these retreats are extremely beneficial. It is not always easy to find these, and many have very particular dates or restrictions, like cancer type, so I did not qualify. The date of this retreat lined up perfectly for me: right after my birthday, the weekend I would have been going in for my next round had I needed further treatment (so it officially marked recovery), and a couple weeks before my sister’s wedding. So, again, was it the wisest use of my money? I supposed you’ll have to make that judgment call, but I personally feel it was one of the best investments I’ve made thus far.

The biggest blessing in all of this was that it turned out I didn’t have to stress out too much about finances. Not as much as I would have anyway. I was able to preserve and protect my future and engage in various methods of healing without having to worry about paying for it. And for that I am extremely grateful. (Working on the thank you cards…) My decisions were motivated by immediate health concerns, and in the beginning I exercised as much judiciousness as I was capable of in the haze of insomnia, steroids, and hormones.

I tried to live as much as possible when I was capable of being out and about, but I did my best to be careful with my spending on these days. The reality is, I spent a month of my summer in the hospital, and at least another month more or less in bed. Between fatigue and brain fog, and when some side effects did hit, all I could do on many days between treatment was Netflix and chill from bed. And, that’s not actually as great as it sounds. It’s frustrating having no energy and being practically confined to bed. I’m lucky it wasn’t worse, though. So, there’s the reality of my summer. Since this turned out to be quite long, I separated it into two posts. The second details the rest of it, and what it’s like putting the pieces back together post treatment.