Original post 5/20/08
Our big decision concerning treatment is made. It actually seems too easy. After all of my anxiety over treatment, it all comes down to taking a tiny pill each day. No surgery. I did not want to have a mastectomy, but I was prepared to do so to save my life. No chemotherapy. I was really scared about how sick I would get. Why did I stress over these things? I know God is in control. He had all the bases covered before I even knew the extent of my disease. (I was not worried about having help; so many people offered to help us, I knew any one of them would be there in a heartbeat to help in any way we expressed we needed help.)
I had no idea there are treatment options besides surgery, chemotherapy & radiation. I learn that there are other alternatives I never would have considered to be forms of treatment for cancer.
I am, for the next week & a half, preoccupied with my migraine headaches that are daily increasing in intensity. By the weekend of Jan. 5th, I have awoken only 3 mornings, in 6 weeks, without a migraine. It is so frustrating to go through my prescriptions & my “bag of tricks” to manage the migraines & still have my head throbbing. It definitely affects my disposition negatively, as I attempt to keep going about my daily activities. It’s really hard to maintain a positive attitude & to try to be pleasant to everyone around me. I can’t take it any longer.
Saturday evening, I ask Ed to take me to the ER for pain shots, to kill that day’s migraine. As I am waiting to be seen by a doctor, I am in tears from the pain. From past experience, I know pain shots will finally break the cycle of pain I am experiencing. After 3 injections, the pain is under control & I am sent home to sleep it off.
With the cycle of pain broken, I awake the next morning without a migraine. Thank you God! I make an appointment with Dr. Pam to discuss this problem; so, I will not repeat this cycle. In November, she had prescribed a new medication to take when I got a migraine. 1990 – 91 I tried medications to prevent migraines but found they were ineffective, caused unacceptable side effects, or caused an allergic reaction. Dr. Pam tells me about a newer medication that is now available. The drawback is the fact that she cannot determine the dosage that will work for me. She can give me a starting dosage. Once each week I will increase the dosage, until I find the dosage that is effective in preventing my migraines. I’m willing to try it.
We talk to Dr. Pam to bring her up to date on my PET scan, final diagnosis, 2nd opinion appointment, & choice of treatment. We ask her opinion of our choice to go with hormone therapy. She explains that this is not her area of expertise, but she will do some research on the current, most common practices & pass along her findings to us.
Ed is back for an appointment a couple of weeks later, & Dr. Pam hands him a stack of current research, most of which pertains to treatment of stage IV invasive ductile carcinoma, positive for hormone receptors. It is obvious she narrowed the research to my exact diagnosis. How many doctors do this? While Ed is there, he tells her I am not feeling well & describes my symptoms. She does not like what she hears. She says her office hours are over at 2:30, & he should bring me back at that time. Dr. Pam is a gem!
Ed stops at home before going back to work. He gives me the research & tells me to be ready to go to see her at 2:30.
I read through the research & find that every article recommends hormone therapy over chemotherapy. Thank you, God, for the medical confirmation of our choice.
Dr. Pam is not surprised when I tell her I read all the research she sent home that morning. She agrees that we made the right choice to go with hormone therapy. This adds to our comfort level with our decision.
Steven had encouraged us to look into clinical trials; so, we asked Dr. Pam if she can help us find clinical trials. It’s already after office hours, but she tells us to go pick up my new prescriptions & come back. She will look up clinical trials, within driving distance, & print them for us. She tells Ed to just knock on the outer office door, when we come back. What doctor does this? We tell her she does not have to do this right away, but she says she is going to be there to catch up on paper work anyway.
Over the next few weeks, I do not have any negative reaction to the new medication to, hopefully, prevent my migraines. They continue, but they are not daily or as severe. This is a welcome relief! They are slowly improving, but I still do not feel they are under control.
Friends had asked us to join them in Florida, for a week or a long weekend, during the 6 weeks they will be staying in Boynton Beach. I told Ed I would like to go, but I cannot make the commitment to buy airline tickets unless my migraines are under control. If I go, I want to enjoy myself, & I don’t want to spoil everyone else’s good time because I have nasty migraines.
January 30th, we have an appointment with Dr. Powers to discuss treatment to strengthen my immune system. We don’t know what to expect. Can he help my ulcerative colitis? Can he help my migraines headaches? We don’t know. How will he strengthen my immune system?
We give Dr. Powers a copy of the PET scan report, which he does not have. I had stated, in a questionnaire I returned to his office Dec. 26th, that my diagnosis is stage IV metastatic breast cancer, but this is the proof. Dr. Powers agrees with our decision to go with hormone therapy. He says my immune system is so compromised, due to my ulcerative colitis, that I cannot handle chemotherapy. In fact, he implies it could cost me my life! He uses much stronger language than Dr. Khalil. This is further confirmation that we made the right decision.
He orders some additional lab tests, recommends taking double my daily, multiple vitamins, 3 other supplements, & he puts me on a very strict low amylose diet.
One supplement he recommends is vitamin C. He says to start with 1,000mg & gradually increase to 4,000mg per day. I, respectfully, tell him that I cannot take supplemental vitamin C, due to my ulcerative colitis; it will cause a flare-up. I know from my reading & from experience.
He suggests that I use Ester C. He went on to explain the role vitamin C can play in killing cancer cells, which sounds wonderful. I am thinking, “I wish I could take extra vitamin C.”
Again, I tell him, respectfully, that I have used Ester C & found that it also causes flare-ups, but I will try it. I want it to work, but I know my past experiences.
I am trying to follow what Dr. Powers is telling us, based on my previous study of nutrition, but he is talking about some information that is foreign to me. I ask some questions. I hope Ed is taking good notes. When I look at the diet sheet, I am shocked! I think, “You’ve got to be kidding!” My impression is that the purpose of this diet is mainly to manage my ulcerative colitis. I cannot eat any grains – no wheat, oats, rye or rice. No root vegetables except onions & garlic. Raw carrots are OK but not cooked. Fruits are OK, except bananas & citrus. Nuts & seeds are OK, except NO peanuts & NO peanut butter. No sugar in any form. No additives that I cannot pronounce.
I’m in a panic! My negative emotions are screaming so loudly that I can’t hear God telling me that He is sufficient to meet all my needs. What am I going to eat for breakfast? Ed tries to help me with ideas. He is very supportive & encouraging. Unfortunately, I’m not in the mood for being encouraged. I’m upset. I don’t care about the sugar, root vegetables or additives. I want my grains & peanut butter back. How am I going to adjust? Why did I make the promise to Steven that I will do ANYTHING my doctors tell me I need to do? There is only one way I can keep my promise, with God’s help!
Ed & I go shopping & carefully think through our meal choices. In fact, we decide we need to eat at home more often, in order to stick with this diet, but every time I open the pantry cupboard, it bothers me to look at items I can no longer eat. I have to remove them.
All the kids came home the weekend of Feb. 9th; so, I cleaned the pantry cupboard & removed everything I cannot eat. I placed a few items in a storage cupboard in the garage to have on hand when they are visiting. I placed the remaining items in a large storage container. When the kids came, I told them to take a shopping bag, fill it with the items they want, & take them home.
It is very hard to adjust to this diet! I need to understand why it was necessary to eat like this to make sense of why I should discipline myself to comply with it & to stick with it.
Right after our appointment with Dr. Powers, I want to know what the supplements he recommended are & what they are intended to treat or to help. Ed’s notes do not say, & I cannot remember if Dr. Powers told us or not. I do a search on the Internet & discover their purposes. Then I do a search to see if I can find anything on the low amylose diet. What I find is interesting, but it does not mention any specific benefits for ulcerative colitis or cancer.
I send an email to his receptionist to ask Dr. Powers for a recommendation of book I can read to give me a general overview of the perspective from which he works. I explain, “He obviously works on a much deeper level than I am familiar with, & I like to understand what I am doing & why I am doing it. I want to know what benefits I can expect.”
It takes a few days to get a reply to this & several other questions I asked; he gives me the name of an author, Patrick Quillin. It takes several search engines & cross-referencing before I find one of the author’s websites www.4nutrition.com. This site contains a wealth of information. As I read this information, I find that 4 chapters of one of his books, Beating Cancer With Nutrition, can be opened & read. I read the executive summary, & I know I want the book.
As I wait for the book to arrive in the mail, I return to the website. This information is the beginning of a new adventure. It provides me with a reason for sticking with the diet, even if I don’t like it. It isn’t just helping to strengthen my immune system or to improve my ulcerative colitis. I can starve the cancer cells by avoiding certain foods. Most of the foods I am not permitted to eat are among them! At this point, I can’t imagine this is possible, but this helps me to begin to buy into the diet. I am still telling everyone how miserable I am on this diet. Surely, I am making everyone else miserable, as they listen to me whine. They sympathize with me, which is what I want at that point, but I’m sure they wish I would stop whining about it, after they hear it once.
If I have strong convictions about a matter, I have a stubborn resolve that helps to keep me motivated & self-disciplined. I’m human. I can get lazy & fail. God reminds me that I’m off track, & He helps me to get back on track. As an avid reader, I know that God uses the knowledge & understanding I gain, through my reading, to instill such strong convictions.
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