Ch 13 – Adjusting

Original post 5/27/08

A week into the diet, I am feeling hungry all the time. I’m weak, shaky, & tired. I don’t know what to do. I get a couple of migraines that seem to be like those I get if I go too long without eating. To see if I am right, I have a piece of multi-grain toast with my favorite apricot butter on it. I get rid of the headache within 15 minutes.

I send an email to Dr. Powers’ receptionist to ask Dr. Powers what I should do about my constant hunger. Should I add some whole or multi-grains to my diet? The answer is, “No.” I should eat more fruit. Dr. Powers is a very intelligent man, but I do not think he is the best communicator. Prior to meeting him, we heard many amazing stories of people he has helped tremendously. In fact, several people recommended we see him. To be fair, email & 2nd party phone calls are not the best system for communicating with a physician, & I’m a very inquisitive patient.

I know it is important to be proactive in my treatment & learning as much as I can about my disease; this is confirmation of these facts. In the fall, it is hard to come to grips with the fact that I have cancer & do research for myself. I’m glad Ed & the kids are comfortable searching the Internet & reading the information the doctors & the Breast Center gave us so we are always prepared for our appointments with a list of questions. They are always wonderful advocates for me! We make a great team! Thank you God for my family!

By January, I am able to accept responsibility to do everything possible to increase my odds of beating this cancer. I know God is in control of the ultimate outcome, & I know he told me that it is not a death sentence. However, I realize that God expects each of us to care for our bodies. Now that I know mine is not well, I cannot be irresponsible about my diet, exercise & sleeping habits & expect him to miraculously spare my life.

As I struggle with this diet, I direct my anger at Dr. Powers. I wonder if he ever tried to live on it. I did ask him if my body will eventually figure out that it can convert fat cells into energy, which will help to alleviate some of my symptoms. Dr. Powers’ email response says it will, but I can eat more fruit. It’s too bad fruit doesn’t stick with me for very long. Although I’m not unhappy with the 5-pound weight loss, I had different options in mind.

Every time I leave the house, I pack up several snacks (a bottle of water or no-calorie fitness water, a soy-based energy bar, piece of fruit & a bag of mixed nuts, without peanuts).

Eating out is a challenge, too. There are usually only a couple of choices on the menu that fit or come close to fitting my diet. Most restaurants will make modifications or substitutions. A few require me to purchase a side order to replace what I cannot eat.

I try to take the vitamin C Dr. Powers recommended. I take 1,000mg for a few days & don’t have a reaction; so, I take 2,000mg, Feb. 12. I have an immediate reaction. My UC (ulcerative colitis) flares up. When I brush my teeth the next morning, I can’t even touch my gums with my toothbrush! Of course, I didn’t take any more supplemental vitamin C. I emailed Dr. Powers office to tell him that the vitamin C caused my UC to flare up & to ask if the vitamin C caused the tenderness of my gums. His explanation of the tenderness of my gums: “it is a reaction due to latent viruses or a detox reaction,” but I am to keep taking the Vitamin C. I, respectfully, decline to do so, due to the flare-up of the UC.

One bright spot is the fact that my migraines seem to be under control by Valentine’s Day. I am willing to commit to buying airline tickets to Florida. This is an answer to prayer. We book our flight for the end of February. The extra time should mean they will be even better.

The book, Beating Cancer With Nutrition, comes in the mail. I realize that I would not have chosen to purchase this book if I had seen the title on the shelf in the book store. I would have had the wrong impression about the author & purpose of this book. I wouldn’t even have taken it off the shelf to read the back of it. God knew I needed a recommendation from a credible source, if I was to read it.

I am astounded by what I read, & I want to pass along some of what I learned. If you know someone who has cancer, this is a good gift book. I hope my future blogs will whet your appetite for more of the information that it holds.

Kristy started her website www.firstgiving.com/survive February 5th, & I started writing my story 2 weeks later & hyperlinked it in this blog format. She encouraged me to exercise; so, I decided to use my elliptical. I dusted it off & vowed to do 2 miles twice a week. I thought, “I would like to do the 2 miles 3 times a week. Maybe I’ll set that as a goal to work toward.”

I read a few chapters of Beating Cancer With Nutrition & read that cancer cells don’t like oxygen. It is toxic to them – it kills them. Even breathing deeply increases one’s oxygen intake & helps to kill some cancer cells. That was just the motivation I needed. I thought, “So, the cancer cells don’t like oxygen. Well, then I’m going to send them lots more of it! I’m going to do the elliptical 3 times a week instead of 2!” When I don’t feel like getting on the elliptical I remind myself that I have to kill some more cancer cells! It’s not the same as using it to lose weight. The motivation is MUCH stronger!

As I deal with the UC flare-up I also have trouble with more pain than usual in my left knee & right hip. There are days I get out my crutches to get around. I know I have not done anything to injure either joint. Neither joint requires that I use crutches all day long. The intense pain comes & goes. Then my lower back starts to hurt badly. I made an appointment with a chiropractor, which led to a series of appointments over 2 months. I went for a therapeutic massage. I stretch, use moist heat & a back massage cushion. I get some temporary relief, but nothing provides the long-term relief that I expect.

The UC bothers my stomach. I’m used to keeping on hand & carrying with me mints or mint candy for my stomach. Since I cannot have any sugar, I have to find a substitute – sugar free life savers. My stomach is really bothering me. Mints are not enough. I want to head for the antacids every time I eat. The only thing that does not bother my stomach is water.

The week we are to leave for Florida I am miserable. I call Dr. Powers’ office & Dr. Gallagher’s office to ask what they suggest for my UC flare-up. Dr. Gallagher prescribed prednisone for the last flare-up, & Dr. Powers asked to take me off of it in January.

Dr. Powers’ office called to tell me that he did not have a suggestion because this is not his specialty.

Dr. Gallagher’s office called & told me he did not have any openings for an appointment. I should go to the hospital for blood work. What will that tell him? The results show that everything is normal. I decided that I will have to do some reading to figure out what to do with supplements.

We got very good news Feb. 27th, before we left for Florida. February 19th, I had a baseline PET scan. Dr. Patel told us, in December, that the most we could hope for was a scan that was the same as the one in December. We were also told to be prepared for it to possibly be worse, since the AI (aromatase inhibitor) takes a month to be fully effective. When this scan is done it is only 7 weeks after starting the AI. I had made radical changes in my diet, but those changes were made only 3 weeks prior to the scan. Dr. Patel is very excited to tell us that the scan shows slight improvement over the scan in December; this is quite unexpected. We are elated & praising God! We know the results cannot be explained by the medication or diet; they can only be explained as an answer to the consistent prayers that are lifted on my behalf by so many faithful family, friends & strangers. This is so awesome!

We met with Dr. Powers to share these results. He is pleased. I let him know that I purchased & I am reading Beating Cancer With Nutrition. I was getting over my anger with Dr. Powers, as I am beginning to accept this new diet, because of what I am reading. I did suggest that he might discuss, with future patients, the psychological adjustments one must make to the low amylose diet. It may also help to provide some information about the benefits of the diet. I didn’t think a mere diet sheet listing what one can & cannot eat provided a strong reason to comply with it. Dr. Powers thought I made some valid points.

We had a wonderful time in Florida, Feb. 28 – March 4. The weather was beautiful, & it was very relaxing to get away for a few days. I read more of my book on the plane. The new information I am learning is very exciting & helps to answer many of my questions.

When we get back home I finish reading the book. I discover that I should add a few more supplements to my regimen & eliminate milk & cheese from my diet, as these also feed cancer cells & their elimination will help my UC.

Then I turn my attention to seeking information on UC. Dr. Gallagher told me I did not have to eat a special diet for the UC, but what I read says otherwise. I have some more self-imposed adjustments to make in my diet.

March 14 – 21 we were off on spring break. Steven, Kelly & Parker joined us for the first weekend. Lisa & Dave visit us too. We had a great week.

We travelled to Lisa & Dave’s, in Forest, VA, & spent Easter weekend with them. While we are there I asked Lisa if there is a health foods store or vitamin shop we can visit. I am having difficulty finding one of the digestive enzymes that is recommended for my UC. The sales associates are very helpful. The store has several computers customers can use to research conditions, diseases, vitamins, supplements, or health issues. We take full advantage of the computer data bases & the helpful sales associates. I find a digestive enzyme complex with all the enzymes I need in one tablet. I was happy to learn that I can shop at this store online, & the data bases are available online. (www.VitaminShoppe.com)

That weekend, I also purchased another book to research UC further. I learn that the inflammation UC causes in the colon can also manifest in one’s joints. (So this is the reason why I had the unusually painful knee, hip & lower back – referred inflammation.) I learn that I need to increase a couple of the supplements I’m currently taking, to reduce the inflammation my UC medication is not handling. It is especially helpful to learn that it will take 6 weeks to control the UC flare-up with supplements. Now I know what is realistic to expect. I would have expected faster results, & I would have been disappointed when I did not get the results I expected in the time frame I expected. Thank you, God, for leading me to buy this book.

Lisa & I talk about my reading & research. I tell her I don’t want anyone to see this as Patti’s plan to bring about healing or to beat the cancer. I don’t even want anyone to think it is any particular author’s or doctor’s plan. Although I often say, “I’m going to beat this cancer & beat it with a big stick!” I’m really letting people know that I’m going to continue to be aggressive & to be proactive. I am fully aware that God is in control of the final outcome. I just have the special privilege of knowing this is not a death sentence. As I said earlier, I know I must be responsible in how I take care of myself. I believe God has led us as we have chosen books & Internet sites to read. He has helped us, as a family, to ask good questions. I believe he has led me in choosing supplements & making food choices.

Over time, I have adjusted to this new diet. Today, it does not bother me to see other people eat foods I cannot eat. I’ve found substitutes for some favorite foods, but most of my favorite foods do not have substitutes. Saying no to sweets & other favorite foods is the easy part. The hard part is the internal struggle. I know the right answer is “no” but I wish I could say “yes” without feeling guilty & without feeding cancer cells. In the first few weeks, this struggle was very strong. At times, it brought me to tears. Today, I find it easier to say no. It’s not the same as saying no because I’m not on a diet to lose weight. I’m saying no to avoid feeding cancer cells! That’s entirely different! It’s easy to rationalize cheating on a weight-loss diet, by having a dessert, but I cannot rationalize feeding cancer cells. God helps me to keep my focus. A single bite of a tempting food is enough to satisfy my curiosity. As soon as I taste it, I am reminded that I do not want any more, because I do not want to feed the cancer cells. God is always faithful. He gives me strength to face each challenge.

In early May, I read some material from the American Cancer Society about hormone therapy. I was a bit surprised when I read that when oncologists use AI’s to treat stage IV metastatic breast cancer, the expectation is merely that the AI will keep the cancer from spreading or getting worse. I am expecting mine to diminish, because I am doing more than taking the AI. My next PET scan is scheduled for May 6th. We are anxious to get the results June 2nd, after 3 full months on the AI, the diet & exercise 3 times per week. Three months of prayers of hundreds of people! God is in control of the outcome, but I will do my part to be responsible & take care of myself physically.