Monday, May 7, 2018

Health update

I am scheduled to start chemo to reduce the size of a GIST (gastro-intestinal stromal tumor) to prevent -- or minimize -- surgery that would require removing my whole stomach and part of my esophagus.

Now it is down to who pays. Cost of a month's meds is $11,000. There could be help on many fronts. First victory - Humana, after saying it wasn't covered, has given me approval for the name brand med, which is what the oncologist has ordered. However, the co-pay was $3,000 a month. After many calls, it is now down to $950 co-pay a month, still pretty hard to swallow.

Novartis, the maker of the med, may opt to provide it for $25 a month based on my income and the severity of the illness. My fingers are crossed. Definitely the best deal, but it could be up to three weeks wait, and there is a little discomfort that I'm hoping will go away if the tumor shrinks.

In the meantime, I am dealing with this by assuming that anything less than total removal of my stomach is a win. And even if the worst happens, it is not life threatening. So that's where I am.

I'm continuing on my low carb ketogenic diet. I've started drinking Essiac tea every night. My friend Bill reminded me that turmeric has cancer fighting properties. I can do that! Love curried anything, which is loaded with it. My daughter reminded me of the healing properties of frankincense. I rub it on the back of my neck in the morning, put a few drops on the personal diffuser I wear around my neck, and use it in my cute little diffuser that fits in the USB port on my computer and in my car.

Finally, the weather has broken and spring is here. I filled my seedling tray with organic seedling mix and filled 11 cells, mostly tomatoes, in each of 24 rows. There is one row of basil and four rows of flowers, mostly nasturtiums. See, even the flowers I grow have to be edible! And they have already started to germinate.

I spent time in the sun cleaning up my rose garden yesterday. I often say that making a dozen or so French baguettes twice a week are my moments of Zen, but I think flower beds are, too!

Cyn is coming over this afternoon to practice Tai Chi with me. You can find Brother Raymond teaching Tai Chi here. Cyn and I go to River Bend on Wednesday for first hand instructions.

Brother Raymond leading tai chi class
I am stopping to smell the roses, bake bread and do tai chi with friends. Who could ask for anything more?


Friday, April 27, 2018

My health - not so good right now.

I have followed a ketogenic diet for eight years. I slip out of ketosis from time to time, but for the most part, I am in, at least minimally. This means that I use fat for energy rather than carbs. Although I eat about 25 to 30 grams of carbs a day, which my brain needs, for the rest of my energy needs my body uses fat, which it converts to ketones. Those ketones act like carbs in terms of providing energy. While the brain needs a little pure carbohydrate, it is interesting that most people, including me, say that a low carb diet helps them to get rid of "brain fog." So I guess a little is great, and too much is NOT!

I have read enough about the effect of carbs on malignant tumors that I felt that I was hedging my bets with my low carb diet, since my family has had its share of malignancies. Ketogenic diet = insurance policy against cancer, or so I thought.

I have just been diagnosed with a soft tissue sarcoma, called a GIST. In layman's terms, I have cancer, or pre-cancer because the cells are still too small to be picked up in a test. But they are there. There is no such thing as a benign GIST. 

Mine was diagnosed locally as 3 cm, considered very small. They did another test locally and told my daughter it was 4 cm. When I talked to the surgeon at IU, Dr. Schmidt, he said surgical removal would require taking out nearly half of the stomach and part of the esophagus. Not good news. Chemo might shrink it into a more manageable size, or sometimes even eliminate it entirely. He ran another test, as the test from St. Joe Med Center was not done properly, and it showed the small intestine in great detail but missed most of the stomach (waited too long after I drank the barium shake to run the test). He ran another CT scan Monday evening.

He called me on Tuesday and we played phone tag until mid-morning the next day. I got hit with very bad news. It is not 3 cm, not 4 cm, but 6 cm. Surgery would require removing the stomach in total. I was gob smacked, for lack of a better term. He had already lined me up with an oncologist, so I went back down Wednesday to see him and look at alternatives to surgery, at least for now.

On Wednesday, I spent two hours listening to my oncologist, Dr. Rushing, at IU Hospital in Indianapolis. He explained in detail what the term "cancer" means in biological terms. Most people use cancer interchangeably with malignancy. They are not the same thing. Malignancy is the top level term, and cancer is one of several subsets of malignancies. "Cancer" refers only to malignancies of organs -- cancer of the lungs, cancer of the liver, cancer of the colon, etc. My tumor is in my stomach, but it is not cancer OF the stomach. The malignancy is in a soft tissue tumor that has planted itself firmly into the wall of my stomach. It can occur anywhere in the alimentary tract, but usually in or on the stomach.  It is part of the subset of malignancies called "sarcomas." They are soft tissue tumors, and they occur as GISTs (what I have) or tumors of fat, muscle, bone, cartilage, tendons, vessels and nerves. Fortunately, they are all less apt to metastasize. If they do, GISTs go to the liver the most often, rarely to the lymph nodes. 

The oncologist and I agreed that my best course of action is chemotherapy. He said my tumor will not be totally eliminated -- it's too big and buried in the wall of the stomach.

I asked, "Really? Never?" He answered that if it did, it would be a first. Sigh . . .

But he said the chemo may shrink it to the point that we are back to removing only half the stomach, and that it might eliminate the pain and bleeding. Those two symptoms were what led me to the doctor in the first place. I am on ulcer meds, and they do help, but I still have some discomfort.

Speaking of being gob smacked, one month of my meds (it's a pill, taken orally once a day) is $11,000, and my insurance doesn't cover it. However, if I go with generic, it drops to around $4,500 a month and is covered, with a co-pay of $700. Sounds downright cheap after hearing $11,000 a MONTH! My oncologist's office is working with pricing. Hopefully they will say the generic is okay. He even said they might find a program that would help with the co-pay.

In the meantime, on a lighter note, I hit the five-month mark (yesterday) since my foot and ankle surgery, and I have the surgeon's permission to start running again! We just did short 30 second sprints at Crossfit today, and it felt like I was flying!! So lovely!!! Tashi and I just came back from a little trot, because running is very good for her as well.

So how am I doing? I'm past the shock. I'm continuing to do my low carb thing, and am going to add bone broth to my regimen. I'm doing tai chi once a week at the River Bend Cancer Services in South Bend. My friend and Chi Gong specialist Jessica is going to lead my friend Cyn and me in a walking chi gong medication on Sunday, May 3, I hope. I am blown away by the loving support of family and friends.

And of course, I am still asking for jokes. I decided I would rather have jokes than sympathy. If you have read this to the end, send me a joke. Every one of them I have gotten so far has elicited a belly laugh, even when I read them for a second and third time.   :)

Peace.



Thursday, April 5, 2018

How did I start blogging?

I have been blogging for quite a while now, starting with my farm life. So many of you have been with me through chicken stories, pet stories, cooking stories, and now, grandchildren getting married stories.

How did I start blogging? I went to a movie.

I saw Julie and Julia - twice in the theatre, and countless additional times since I bought the DVD. Julie blogged - she started a blog to talk about making every recipe in Julia Child's book, Mastering the Art of French Cooking. Eventually it led to a movie! I was so inspired that I walked out of the theatre, went home and wrote my first blog.

I don't do any thing tricky, just write my stuff and upload pics. My life is interesting enough that there seem to be over a hundred hits for every blog lately, and that makes me happy - happy to share bits of my life with you.

Still waiting for a movie contract though. Just saying . . .

My bookmark in the book My Life In France is a boarding pass from my trip to France!




Tuesday, April 3, 2018

Joe and Katie's wedding

We had two weddings last fall. I have been remiss in getting pictures up from the second one, the marriage of my younger grandson Joe and Katie, his lovely bride.

We had a wonderful time! The wedding took place in West Lafayette. Katie and Joe are completely devoted to one another, and to their business (gotta get a plug in here!), Summit Strength. Joe takes care of the business end and teaches classes. Katie teaches nutrition. Want to see their Facebook page? See it here.

But back to the wedding. Great music, great food (a taco bar, and it was FANTASTIC!). Since I had a two hour trip home, I didn't stay until the last dog was hung, but nevertheless, had a great time.

Here are some of my favorite pics.


The bride and groom


Katie


Joe


Katie and Joe Mills

Joe dancing with Grandma Storkman (Carol)

Christine, Grandma Susie and Dad (Jim)


Monday, January 8, 2018

Recovery from foot and ankle surgery

Well, tomorrow marks two weeks since the doctor did surgery on my foot (tendon) and ankle (ligament). Pain wise, I'm okay. Didn't really need to take any pain meds other than Tylenol, I think. In fact, the pain med I took made my heart race, and between that and doing far more than I should have been doing, I ended up in the hospital with Prinzmetal's angina. It was diagnosed several years ago, and it is certainly not life threatening - nitroglycerine tablets provide immediate relief - but I went from having three or four a YEAR to having four in two days, and they were extreme.

So now, when I'm on a mission to do things, I rest frequently. Get up, wash up (or shower every third day or so), then SIT. Go down the stairs backwards on my knees with bag of stuff (yarrow oil for my dry lips, Kindle, cell phone, etc.), then SIT. Feed the dogs, then SIT. You get the picture.

My attitude towards life is, "If you can, then DO." So if I can find a way to get it done (such as doing a load of laundry, requiring 36 stair steps total and pushing the clothes to the machine with a crutch), then I do it. Not anymore. That is what precipitated the fourth and worst attack of Prinzmetal's, and it was bad enough to scare me.

I imagined this whole ordeal would be bad, and the anticipation of a bad time didn't make the outcome one damned bit different. Nope. In fact, it is even worse than anything I imagined. No driving, no walking, no working at market, NOTHING. Depending on someone else to do every little thing, like delivering an internet order to the PO, picking up a few groceries, and of course, doing my laundry.

The best thing now is that I actually have less pain than I did before the surgery. Doctor's appointment a week from Wednesday, at which time I will find out next steps - and oh, how I hope it includes STEPS! Depending on healing, worst case is five more weeks in cast, best case is cast off, boot on and very minimal walking. We will see. I'm trying not to get my hopes up.

I ordered a love-seat recliner, hoping I could sleep downstairs. It got here late due to fires in CA and snowstorms in IN, but my son uncrated it and put together the few little things that had to be done. Here is a pic of the two of us when it was finally up. Yes, I'm napping in it - it's very comfy - but I still want to be in my bed at night.



Friday, December 8, 2017

Tashi's eating problem - SOLVED!!

I have written extensively about the trials and tribulations of getting Tashi to eat. In case you haven't read the last post, in which I said she was better - sort of, here is the link so you can read, or perhaps review:  A tale of two dogs and their diets

Since I wrote this, I finally got around to putting their personal diffusers on their collars. These are cute little clip-on pendants that can be infused with essential oils. I got them several months ago but hadn't yet done the research on what I might put on them. I found that coriander was good for appetite normalization. I noticed that it didn't say that it would encourage eating, but just that it would normalize the appetite. Tashi definitely has not had a normal appetite since this whole thing started in 2014.

Coriander - that's what I should use. So I did, for Tashi. For Fred, I tried spearmint, which is supposed to help for overweight dogs.

Bingo! Immediately after hanging the coriander essential oil-infused pendant around Tashi's neck, she started eating with no encouragement. In fact, she chased Fred away from her bowl the other night, and she comes to the kitchen begging. The problems with any kind of grain seem to have disappeared, and she is eating kibble for the first time in years - about a cup a day.

I'm taking her to the vet along with Fred today. It's Fred's annual physical, so I might as well take Tashi along and get her weighed in. Right before I put the coriander EO around her neck, she weighed in at 48.1, which is within her normal range (48 to 54). That is a first since the weight started to plunge in 2014.

I'll finish this post when I get home from the vet. Fingers crossed that her weight is holding or up a little more.

Tashi's weight - 48.8! Brava, Tashi!

The gym in my basement

Over the years, I've acquired a good bit of equipment that has just been sitting since I moved here. I have used the stationary bike a few times, but the rest of it wasn't even completely put together after I moved.

I tore a ligament in my right ankle as a child. I am quite certain I know when. Second grade, we had some old playground equipment that was brought in from the country schools when they were consolidated into the town school.

One sad piece of equipment the town school inherited was a sliding board with no slide. But they set it up anyway, and we loved to pretend we were firemen. We would climb the stairs and then slide down the bars. I went down a bar one day and just simply crushed my ankle! I couldn't walk, even missed a couple of days of school. After that, sprains became a familiar experience. One of the more dramatic incidents occurred in London, when I stepped off a curb and fell flat on my face. The next thing I knew, my husband and a stranger were pulling me back up and out of the path of a speeding taxi.

In my freezer, I have three difference ice wraps for the ankle. In my closet, I have two different support boots. In the garage, a set of crutches resides. In my purse, I carry an elastic bandage. You just never know when you'll need some help, right?

Crossfit really hasn't helped it any. And mowing my very bumpy half acre yard with a regular lawnmower (no riding for me - it's exercise, you know!) has contributed bigly to the pain in my foot and ankle.

I finally bit the bullet after being on crutches again for a few days and saw my doctor. He held my heel and wiggled my foot. He said, "Call South Bend Orthopedics. You need surgery." I did, I do, December 26 it will be repaired. MRI showed not only a torn ligament, but also a torn tendon. Surgeon says that the tendon got overworked because the torn ligament couldn't stabilize my ankle. Voila - a mess!!!

I have continued to work out at the Crossfit box. Finally the pain was bad enough that I called it a day, hence the dusting off of the equipment in the basement. I can go at my own pace, stay away from anything that puts pressure on the ankle, and stay in reasonable shape prior to the surgery. I'll be laid up for a month after surgery, can do upper body stuff, but no weight on foot at all. I can't even drive.

In the meantime, I FINALLY have my gym set up in the basement. Alarm still goes off at 5 am on Monday, Wednesday and Friday. I back the car out of the garage on jump-rope days, 50 jumps, then head downstairs to Nordic Track, stationary bike and weights. Have to keep this creaky old body in shape!

My home gym - it will do the job for now.