A Redo….

So here goes for blog post number 2….First, I just came home from a wonderful 3 days with Henry and Sam in Washington, D.C. We were supposed to go last year, but with Big Bertha’s arrival we postponed the trip (our redo). It was an incredible few days walking the city and soaking in every bit of it with my mom and older boys. Thank you to an amazing crew of friends, nanny and husband for keeping Jack Jack so happy while we were gone. It is safe to say we weren’t missed–at all.

Back to the fun stuff: health issues…I am on week three of immunotherapy. It has been pretty tolerable. I would prefer not to spend long days at Dana Farber but the people are nice and except for fatigue the medicine has been pretty easy to handle. The bad news is that baby bertha has become really uncomfortable. It is growing on my left side above my pancreas and sitting on some nerves. I have certain days when it doesn’t really bother me and others when the pain can be quite debilitating. We decided we needed some solution, because as for the short term, the tumor will only grow and start impacting my mobility and general comfort. I met with one doctor who was hoping to do targeted ablation and just reduce that one spot. He was uncomfortable with the site of the tumor and its relationship with the other organs and decided we couldn’t do it. We also had a meeting with an acute pain specialist team next week just to discuss numbing the area. Fortunately, we had a better meeting at Brigham & Women today with the head of the radiation oncology unit and he agreed that we should be proactive about reducing the tumor’s size before it becomes more of an issue, and not simply mask the pain. That said, I was scanned and mapped immediately on site and he is going to start 10 days of radiation on Monday. Game time….As with all of these fun new procedures, we don’t know what to expect but he recommended taking my anti-nausea medicine on the drive in and anyone who knows me knows I can’t even ride the carousel with Jack without feeling sick so we will see how this goes. But if 2 weeks of feeling like I did most of the days in college translates to less pain in my side and being more active again, I will be very happy. The plan is to radiate the tumor and back lymph nodes every day for an hour for 10 days straight. He hopes that he is able to hit the tumor directly with as little impact as possible on my stomach and other areas.There is also some anecdotal evidence that there are benefits of doing immunotherapy and radiation at the same time. They don’t have studies on it but even a whiff of a positive link is certainly something…. IMG_5054

As always, thank you for being so wonderful to me and, more importantly, so supportive of my husband and boys who are all the real fighters in this….couldn’t do one single day without them.

 

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My first ever blog post!

It seems like a good time for a blog…Not a phrase I really ever saw myself writing, but it is always better to be proactive, than reactive so here goes. Franklin and I decided that this is the best way to keep friends and family informed on my latest health issues, as we realize it can be as awkward for you to ask  us for updates as it is for us to respond, especially when the boys are close by. And by Franklin and me, you know I mean Franklin as he is really the voice of reason in this arrangement. My original writing attempt already had a swift trip to the editing room. So these posts will be a joint effort—as thankfully all of our efforts are these days—and the plan will be to update the information once a month, or just as needed.

To step back a bit, as most of you know, I have stage IV adrenal cancer (adrenocortical carcinoma), a fairly rare cancer. I won’t go into all of the specifics but it was a year ago today that I had my 13cm tumor (affectionately nicknamed Bertha, hence the blog name) removed. The surgery went well….Recovery…Then the cancer returned and spread, into my abdomen area, lungs and liver.  Tried a chemo regimen that was brutal and didn’t do anything…then switched to a 2nd chemo regimen that was less brutal  and helped stabilize the cancer and caused some reductions/regression.  Progress. It was a good spring…

Unfortunately last Wednesday night, I went into the ER after a few weeks of nagging side pain and found out that the cancer had resumed growth in some areas and in my abdomen area one tumor has grown into “Baby Bertha” status (4 cm).  The good news is that we caught the new growth fairly early, and already had a backup plan for replacing chemo when it stopped working. I will begin immunotherapy at Dana Farber on Thursday, on a drug called Nivolumab.  We are optimistic about this treatment as it’s had a lot of success across different cancer types. I’ve heard different anecdotal stories about how I will feel, but know every person reacts differently. My body handled chemo well, and I am just hoping for the same. So that’s where we are from a physical standpoint at this moment.  Realistically it takes a few months to know if the immunotherapy is helping, and we will just update this when we have news.

I guess the main reason that I am writing this is that our family is certainly on a roller coaster right now. Things are more uncertain than they were a few weeks/months ago and it is hard. It is impossible to convey how much all of your love and support has meant to all five of us over this past year. We simply couldn’t have handled these obstacles without all of you. My plan is to stay positive and active—things I truly believe have a strong role in fighting this disease. That said, please know that how I look and act doesn’t (YET) translate into kicking Bertha’s ass. It is, however, how I want to face this and how I want my boys to see me. The boys are unaware of recent changes to my health and that is the plan for the time being. The success will hopefully come with the immunotherapy in the next few months…. In the meantime, bring on summer and all of the wonderful things that come with long, unstructured days. Franklin has been pretty clear that a little “bout” of cancer doesn’t get me strokes on the golf course so I’ve got to get my game in shape…