Happy Valentine's Day everyone!!!! We wish everyone a warm and loving day and evening.
We met with Dr. Kuhn and Dr. Norman Zuckerman, my doctors today. I also had an ultrasound done on my legs. My left calf has been hurting non-stop for several months. We were nervous that perhaps I had a blood clot from my Tamoxifen tablet that I take daily to continue to kill my hormones. Blood clots are a side effect of the medicine. Good news is there is no blood clot. Now we need to figure out what is causing the pain. I go in tomorrow for a bone density test. Dr. Norm wants to take me off of Tamoxifen and put me on Arrivedex. One of the side effects of this new drug is bone weakening. I have many thoughts running around in my brain. Are the risks worth being on the drugs. The doctors sure like to put you on drugs to stop or heal one health issue, yet the risks from the drugs are extremely high. Many decisions to contemplate.
We met with Dr. Allure last Friday. Gary felt more comfortable with him than with Dr. Zuckerman. I do have to say I find it interesting that if someone goes to MSTI and is ill, they encourage you to wear face masks. Dr. Allure had a cold and stuffy nose, yet he was not wearing a face mask. Double standards, perhaps? Doctors don't spread germs, they just help care for them? Oops, is that negative? Anyway, Dr Allure chatted with us and informed us that he had actually received the report from the Mayo Clinic. Gary's cancer marker, unfortunately, is not the EFG-R that resonds to the chemo drug Tarceva. His marker was EFG-R 20. The EFG-R 19 and EFG-R 21 are the ones that respond to Tarceva. We were told that Tarceva would only extend his life for 2 months more than the carbon based chemo they want to start him on. This chemo, we are told, is only expected to give him a year at most. They also wanted to put him on Avastin. This drug has several dangerous side effects. They can cause brain bleed, which causes strokes, if the patient has brain tumors, which we know Gary has. They also cause more blood clots, which Gary also already battles. After discussing the facts about Gary already having these issues with Dr. Allure, he informed us that he, after all did not want to put Gary on this medicine. The risks were too high. Dr. Dan was very insistent with us to start Gary on this medication. Once again, God, I believe, directed us on how to proceed. I truly believe Gary would have already had a stroke if we would have followed Dr. Dan Zuckerman's insistence on starting chemo one and a half months ago. I do want to state that I believe Dan Zuckerman is a good oncologist, he just is human and can make errors and mistakes. He gave up on Gary. He is science minded and does not seem to believe in a higher power, in my opinion. I do know he has helped many good people, he just wasn't the right fit for Gary. We definately have learned it is okay to investigate and explore all options that are available.
We are scheduled to meet with a Dr. Thurston on Friday to interview him and see if he is a good fit. We are also considering some alternative choices which I will reveal shortly.
The benefit is gearing up. WOW!!!!!!!!!!!!! We are so blessed. There are so many wonderful raffle and silent auction items. Thank you, Thank you, Thank you! It is going to be a grand evening. Set up is scheduled for 1:00 p.m. If any of you have some spare time around that time, help will be greatly appreciated. Many hands make light work. Also, help for take down after the event ends would be wonderfully welcomed as well.
We are requesting no visitors on Saturday. Also from at least 4:00 p.m. on Friday as well. Gary is hoping to attend the event. He tires easily and has trouble talking for long lengths of time, so, we, as a family unit, believe it to be beneficial to refuse visitors. Please understand that this is hard for us, but Gary's health needs to be the main focus. Thank you all for understanding. It is quite sad that we must ask this as we would love to visit with everyone.
Gary has a little better stomach these last few days. We are careful on what he consumes. Unfortunately, he is not eating foods that have spice. He used to like foods like this, but lately, his stomach says no! He is still battling headaches. They don't seem quite as severe as they were, but, alas, they still are persistent. We went to bed the other night and he told me his heart was hurting. I immediately became quite frightened. I put my hand on his chest and just started praying. I asked him several times for the next hour how his heart was. He told me it was not hurting anymore. The crazy thing is that I experienced chest pain like I have never felt before or since. I guess I am having sympathy pains. Last night or should I say early this morning, I woke up with a headache across the back of my head in an area I have never experienced headaches before. After we were up and getting ready for the day, I asked Gary if he had had a headache last night and where at on his head. He replied yes, and it was the spot where mine had been. Hmmmmm! What to make of this, I wonder? Is Susie psycho crazy? Perhaps.
We are considering other healing alternatives. We are heading off to Malaysia to a Shaolin Monk whom we are believing will be able to heal Gary. He will be using herbs that are gathered from the jungle. He also will be using his chi. It most likely seems extreme. Western medicine has already stamped Gary's foot with an expiration date and basically put on his toe tag. I believe God works in many many unusual ways. Many people believe in the healing waters of Lourdes. I do not doubt this either. We may end up having Gary dunk in there as well. I do believe God is bringing many people together in prayer for His glory. Miracles happen everyday. This monk that we are going to, does not worship Budda. He believes in God. After all, are there not Catholic Monks? The unknown frighten many people. I have learned that organized religion is quite opionated and does not, in my opinion, like people to stray from the "church". I believe it is good to gather and celebrate and rejoice in God. Fellowship with others is important, as long as God is the center, not a church or organization. There's my soapbox for the night.
This is what I would like to leave everyone with. We do not want to live with the coulda, shoulda, woulda. If you mentally put yourself in our shoes and the path that we have been on, ask yourself this: What would you do, or better yet, what wouldn't you do to save your soul mate?
Sweet dreams! Love and blessings, Sue and Gary
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