Post-Surgery Trauma & Growth

July 30, 2015
Dear Friends & Family,
We are leaving today to go pick up Jonah and Mia from camp as well as Noah who has spent the last 2 weeks with my parents in PA. We miss them, but it has definitely been nice to have some quiet around the house and to be able to get some end of the summer projects done before things get crazy with the school year again.
I wanted to send out what I would like to be a last update for at least a couple of months—but we will see. As I think I shared before, my double mastectomy and initial reconstructive surgery went pretty well. I was up and about pretty quickly and didn’t have most of the pain and mobility issues I was told to expect. Instead, I got to experience unexpected problems—mainly with the tubes and drainage bulbs that were inserted in me and coming out of me to drain the post-op blood. Ultimately, I had to make 3 unplanned trips 50 miles up to Louisville to deal with issues. First, I was bleeding out of my right side and in a lot of pain where the tube was coming out, then the right side was not draining correctly and it turns out that in the tube and partially in my body, there was a long clot of blood that was preventing drainage. Finally, the tube on my right side actually fell out of my body on the way up to the plastic surgeon’s clinic. Meanwhile, my left side (the cancer side) was doing great. When we arrived at the clinic, my doctor was at a conference in Chicago so the nurse texted him and received instructions to go ahead and take out both tubes and then just wrap me up tightly in an ace bandage. The main problem with the drainage tubes coming out is that now all the blood would just drain into the empty cavity where my breast used to be instead of out of my body. Sure enough my breast began to painfully swell and it was even worse when I had to be tightly wrapped in ace bandages all the time like I was wearing a corset. A week later when I went back to see my surgeon for my first “expansion”, he saw my swollen breast and said “Who took your drainage tubes out?” It turns out, the side that was draining well (the left side) was never supposed to be taken out. I couldn’t see his face but Jamie said that he was visibly very mad and upset with his staff. Due to the swelling, he could not begin the expansion and we had to wait another two weeks for my body to absorb all the fluid—not fun.
I went back this week and the swelling had reduced enough to start the expansion—which is an interesting process in and of itself. Meanwhile, we got the pathology report back from the surgery and the cancer removed pretty much had the same characteristics as we had been told previously—triple positive. However, the confirmed that the margins were negative i.e. it would appear that they removed everything that was in the breast and from the three sentinel lymph nodes they removed the cancer had not traveled there or to other parts of the body. There was no cancer in the right breast. The follow-on treatment they recommend in 1 year of chemo and 10 years of hormone therapy (tamoxofin). I have decided that I am not going to do the normal chemo that kills all fast-growing cells—healthy and cancer. However, I am going to try the target chemo that only goes after my HER2+ cells which is the component that made my particular cancer aggressive and fast growing. The drug is called Herceptin (http://www.breastcancer.org/treatment/targeted_therapies/herceptin). This treatment supposedly also has less severe side effects—the main side effect being cardio issues which they will have to monitor. In order to receive this drug I have to have a chest port put in and they will be doing this outpatient surgery on my this coming Tuesday. Once that is done I will be scheduled to get the Herceptin every 3 weeks for a year.
Meanwhile I am continuing to work with an MD who is also a holistic doctor in Indiana. Jamie, working with a Fort Knox doctor, actually got our insurance company to approve these visits so we won’t have to continue to pay for the entire thing ourselves. I am on a high vegetable, no sugar, diet. I’m taking several targeted supplements, juicing regularly and taking mistletoe injections, which is something that has been used for cancer for a while in Europe and now being studied by Johns Hopkins and MD Anderson here in the US.
We have been so blessed through this whole experience by all the prayers from friends, family and those who don’t even know us. Jamie’s sister, my sister and my Mom were all gracious enough to give of their own time to come help at the house both right before and after the surgery by either taking care of me or the kids. My other sister has taken Noah into her home with her three kids these last two weeks switching off with my parents. Additionally, friends have provided dinner every other day for us during the entire month of July. We thank all of you very much.
The Lord has been very good to us. For the first time the other day I wrote to a friend and told my neighbor that getting cancer has actually been good for me. I couldn’t believe I had actually said this aloud and that I had just written this. The whole experience has allowed me to have some great walks and chats with God about my life, interruptible plans, my family, and friends. I’ve had some awesome time with neighbors and friends just popping in to check on me. I’ve gotten to see friends from coops, the neighborhood, and church reach out and help me with my kids and entertain them. Everything about this cancer process is inconvenient but my kids now have friends they never had before, I’ve gotten to know people I might never have said two words to, I’ve reconnected with friends I’ve not heard from in years, and I’ve also been able to send cards and other items to families who have worse grief as sorrow than my own. I haven’t really gotten into the whole breast cancer movement. Frankly I’ve been too busy trying to find ways to help others. It has taken the focus off me and my own troubles and I can invest it elsewhere. I have such peace about all of this.
Many of you sent cards and gifts in the mail or tried to call and left messages. Thank you so much. I am trying to send thank you notes and get in touch but I am often unable to get it all done right now with appointments and other things that come up. Please don’t get offended. If you haven’t heard from me please call, send an email or text and I will try to get in touch. Sometimes the days go by in a blur.
The biggest lesson I have learned is that I am in the driver’s seat with God on this journey. Nobody cares about my health as much as my family. We have faced those scary, “what will happen if die?” questions. There are no guarantees with this illness. I have felt the Lord impress on me that I need to boost my immune system first and foremost. There are many “smart” people I’ve listened to and heard from but I always pray about it and wait until I sense God is nudging me or pricking my conscious to do something. I have asked Him if I should do the other traditional chemo treatments but every time I ask, doors seem to close and I get no confirmation. It has been very clear and we have done a ton of research. I don’t have to do all the Herceptin if I feel it is not helping me. I can decide to stop the treatment. I am not locked into a contract. I can also use the port for high dose vitamin C infusions at my doctors office in Indiana as well.
I have felt wonderful eating clean. My sister is a wonderful, talented cook and vegetarian for 25 years and she walked me through some incredible , flavorful recipes. Yes, I am learning how to cook all over again but using healthier food. We ,as a couple, are constantly learning . I am learning what supplements and juicing recipes to take /make that seem to work and make obvious daily differences. We laugh a lot more and notice how funny we look at the store buying tons of carrots, spinach, and other veggies (we never used before ) every week, but we are devouring them, losing weight, and making a lifestyle change.
I know this is long but I figured I send an update and let you know that we are very blessed and God is good no matter the circumstances. I told Him aloud that I still love Him even though I was diagnosed with cancer. It felt good saying that out loud and hearing my voice in my ears. Sometimes I believe He wants to hear us tell Him we still love Him no matter what……
Blessings, Allison