My son David is now a teenager as of today. I can not believe it and want to freeze time before he gets the teenager attitude! I really need to get it together to organize the many photos I have of my children and hope to make this happen over the winter months. Slowing down is something I plan to do and I am thankful that we have very little sports going on at the moment. Another thing I hope to do is simplify and purge the many things we have collected around this house that are no longer of need or use to us:) I feel refreshed and renewed every time I do this and am able to think and create so much more easily. I am feeling healthy and have healed up almost 100% from the second surgery a month ago!
Fortunately, the results of my CT scan last week did not show anything visibly present:) I had been a bit nervous because one of my lymph nodes in my neck was swollen, but fortunately it was just that...a swollen lymph node doing it's job. Probably since the other 7 nodes were removed under the arm in that side during surgery just 3 weeks ago, my other nodes were working overtime to help heal from the surgery. I spoke with my oncologist, Dr. Isakoff at MGH and he did take more consideration of my interest in acting on the results of the chemo sensitivity lab test from Rational Therapeutics in California. So I will be taking 2 of the drugs from the 3 that were shown to be effective against the tumor's carcinoma cells in the lab. He explained why he would not recommend the third drug (Gemcitabine) because it would likely be too toxic and cause us to have to delay treatments. So I am comfortable with our plan. I will take a 1/2 dosing oral chemo (5FU) only on the days of radiation for 6.5 weeks which will further sensitize abnormal cells to the radiation and also work systemically at a micro level. After the radiation is over, I will do 4 full dose of treatments (Cisplatin) every 3 weeks in and IV. No need for a port, because I have maintained my exercise and my veins are visible and good. This last portion of the treatment will take about 3 hours because 2 hours of hydration will have to precede the treatments.
Today I feel quite anxious because the waiting is getting to be too long to get started with treatment and/or radiation. I opted not to go to Boston for it because the drive would be too stressful to do every day for 6.5 weeks. The first apt with the sister hospital in Exeter is not until next Friday and the secretary said the doc may not even decide to do the mapping/planning for radiation that day. I am wondering if I should get started on the chemo and do a "sandwich" method with 2 Cisplatin treatments, followed by radiation and then the last 2 treatments. I'm also a bit perplexed because the test that I had done with the chemo sensitivity lab recommended use of 3 chemo drugs that were effective in the lab against my particular tumor, and yet it looks like they are starting with just one of the 3. I need to understand why because this lab seems to understand specifically what would work, and yet, it seems to be tough to get my doctor to consider the recommendation from an outside lab. The dictated interpretation of the report has also since arrived from CA, so I am hoping this will be considered. I am clear on the fact that I need to hit this on all sides and time is of the essence. Home and naturopathic remedies are helpful but in my heart I know it may not be enough...especially after learning more about the drivers of my tumor tissue and specific sensitiveness that the tissue has to agents as tested by Rational Therapeutics.
The other thing to discover is the genetic side of things. Foundation Medicine in Cambridge is in now processing another block of my tissue to analyze 315 genes and potential issues. That should be useful information, but my oncologist said we may not be able to act upon any of it because I am technically not in a metastasis situation, which is a state I hope to never experience:) The mental anguish is really affecting me today and it is a weary task to see the right course of action when I feel like I have to keep advocating for myself. With the holidays approaching I just want to be able to enjoy them and not have to deal with all of this right now! Yep, I'm having an off day, but it's to be expected I guess to stumble on occasion...I would not be human if I was always in a positive state of mind:( I'm going to lift this cloud on this rainy day somehow!
I always believe that every cancer has a possible curable outcome. Still it's nice to hear that from your oncologist. Last week we had met with the oncologist the surgeon and the radiologist. They all agreed that the best course of action from this point is 6 1/2 weeks of radiation to the local area followed by four treatments of Cisplatin,which was one of the drugs that the chemo sensitivity test showed would work best on the tumor tissue just removed on October 20th.
I am comfortable with this plan, while continuing to support my body with nutrition and supplements, exercise and positive visualization. Last week I completed my 1st yoga class since surgery and this morning I attended a spinning class at the gym before going out to Portsmouth for my Vitamin C IV treatment. I like this quote / affirmation today:
Here is a quote I saw that really captures how I'm feeling today. Not sure of the author. "It's not about waiting for the storm to pass, it's about learning how to dance in the rain."
I have to rember not to let stress reach me. We know that just the stress can raise you tumor markers in the blood and how important it is to breathe and find the joy in every moment. Today I enjoyed the beautiful trees and glorious colors of Fall on my way to get my vitamin C IV at the naturopath's office. Just breathing and nourishing myself today:)😘
So I got some happy news today! I've been working to discover more about my recurrence which I am calling a "local recurrence with lymph node involvement". There is a genetic testing lab which is the top one in the country called Foundation Medicine in Cambridge, MA. I already know that I am not BRCA positive and don't have that common gene mutation. This lab tests 315 genes of the tumor tissue and also put your details into a data base of nation-wide therapies that are specific to your genetic make up, markers and other technical things I don't yet understand:) Well, I received word that I was approved with full financial aid to have this test completed! It is such a relief because this sort of ordeal is something you can not budget for, and with all the things that hit you, physically & emotionally it does also hit you in the wallet, so every little bit helps.