Yes, I was clear of cancer on the PET scan PRIOR to chemotherapy, just from the two surgeries: bilateral mastectomy and right auxiliary lymph node removal and dissection. For those of you that have never been through aggressive reoccurrence prevention cancer treatment (ie never had cancer or had a slow growing cancer with a lower risk of reoccurrence): often times now days a longer treatment schedule is required to prevent the cancer from coming back, than even to get rid of the original cancer. Its a misconception to think that the hard part is over once the cancer is gone. Not always, but often times the hardest treatment is yet to come when the cancer is gone (particularly for small but aggressive tumors like mine). This was the case for me for sure. You see, I had an extremely aggressive, quickly dividing and very abnormal looking cell cancer. My risk of reoccurrence of the cancer in the next ten years was 30 percent with no treatment after surgery, with a lifetime risk approaching 40- 50 percent. This coupled with the fact that often times breast cancer that comes back, makes its next appearance in the lungs or bones (which is much harder to treat) made the risk of avoiding further treatment for prevention too high.
Typically when this type of aggressive cancer is found it is at stage II or III (or even IV which typically can not be cured). Mine was at Stage Ib when it was found and Ic (just under stage 2) 4 weeks later when it was removed. (And the higher the stage the lower the chance of successful treatment, as well as the higher the risk of reoccurrence.) My nephrologist said that I dodged a big bullet. My primary care said that I've dodged a lot of big bullets. After he said that, I had a fleeting thought about getting a tattoo representing all the serious illnesses that I've had which are cured or controlled now. Maybe a flower made out of ribbons for breast cancer, malignant melanoma, heart disease, and kidney disease? But then again, its not like I beat all these things in my own strength. I had nothing to do with it. (I didn't get the tattoo fyi.) God has gifted me with a thrilling life, never knowing what's on the next page of my suspenseful story. I feel like a I'm the good guy in an action movie that is faced with dangerous situations and comes out unscathed by a hair over and over and over.
Speaking of hair this is a picture of how my hair was "cryopreserved" during chemotherapy. The type of chemo that I needed usually leaves patients completely bald after 2 treatments. I needed 4. Lots of people have been curious about the caps. There are a few brands but I used the "dignicap." It has been in use for about a decade in Europe, but has only been used in the US in the last couple of years.There is a silicone and a cloth layer. The silicone layer (underneath), fills with a gel that is below freezing. The cap has a tube, which is hooked to a machine that continually cools the gel. This actually freezes your hair follicles and keeps them from absorbing the chemotherapy. The cap must be worn for 1 hour before and 2 hours after treatment.
James getting in the fun. Alas, no cap for him!
This picture shows the first significant hair loss after my first chemo. After my second treatment the chunks of hair that came out when I brushed my hair increased dramatically. God has blessed me with a good head of hair, which helped camouflage what was happening, but my hair was (and still is) significantly thinner.
My hair loss didn't actually get any worse than the photo with Bert. Though hair is not the most important thing, feeling that I looked somewhat like myself during treatment, and more importantly looking like myself for my kids, was worth every penny of the cost of the caps (which are NOT covered by insurance and I was only able to utilize, due to generosity from my dear friends and family! I can't thank you enough!) Cancer treatments can bring families into such a low time, physically and emotionally. Little things like having hair, can make an extremely difficult time feel not quit as hopeless.
Though the treatment time (5-6 hours every 3 weeks), was time when I got to relax and watch movies, work on journals for my child life practicum, and catch up on emails, it was hard to enjoy that valuable time to get things done and rare time to myself, as I knew three awful days were coming after the chemo (followed by a week of feeling really bad but not quit as awful). I will write more about why we decided to go forth with chemo and the chemotherapy experience in the next post. For now know that I am still in treatment every 3 weeks, but with another type of treatment that will last for about another year, which does not have nearly the negative side effects of chemo. Our family is recovering, emotionally and spiritually. Please pray for my boys and I emotionally, spiritually, and physically, as well as for provision of continued help and support where we need it. My support system has either moved or is over worked and over tired for the most part. Supporting someone that has cancer means running multiple marathons. My friends are worn out. They have extended so much love, but need to love their families as well (and a few have developed health issues of their own). My prayer is that by this time next year we will be refreshed, recovered, and find our new normal. I look forward to having the energy to run marathons of support for others that need it. We will never be the same just like my body will never be the same. I can't imagine ever being thankful that it had to be this way on this side of heaven, but I do trust that God will use this to glorify Him, and I am grateful that my family gets to be refined with trials.
My sweet family on Cale's second birthday! Its so special to celebrate these milestones!
