Treatment moving Forward

Wow, a lot has been happening. I so greatly appreciate Paul writing the last blog. He has written two, and in both cases I was not in the right space to write. I did not tell him, he did not ask. He must just have known I was struggling with what was going on, and how to convey matters. Nonetheless, his blog also inspired me to be a bit more transparent. What I have presented in the past has of course been truthful, I just haven’t necessarily included the “rough” spots too. As I approach 7 months since the diagnosis, it is unavoidable to hit some rough spots, and MAN we have had some in the past month.

After the error causing a delay in treatment, we took the time to allocate our energy towards getting other opinions for future treatment. I thought this refocus would help me feel constructive and that the time was not wasted. What I wasn’t necessarily ready for was how the results of these consultations would make me feel. In theory, I thought as long as one oncology department in this country could present a plan to not just reduce, but eliminate all the cancer, I would be ecstatic. In reality, when I had my first consultation that affirmed the current treatment plan to just continue chemo, I was devastated. This option would not eliminate the disease, it would just keep it at bay as long as possible. That’s a nice way of putting it. What it means is that the oncologist believes my cancer is incurable. Hearing it once when first diagnosed was numbing. Hearing it the second time was gut wrenching. It put me into a state of mourning for a number of days. It was very hard not to become a cynic and think all the others would follow suit, and that prognosis would be unavoidable. Luckily, the other consultations were already scheduled and I didn’t have time to sulk. To paraphrase another cancer patient who writes about her experiences, it’s okay to have a bad day. Just don’t pack up and live there.

I flew out to San Diego to meet with an oncology surgeon. My aunt/god mother lives there, and she had heard great things about this doctor. Knowing he had such a prominent professional reputation gave me some hope. When we met with him, he confidently outlined a combination surgery where my colostomy could be reversed in the colon AND the lesions in the liver could be removed. He then asked if I was going other places. I outlined the other consultations on the schedule, and once I mentioned the Mayo Clinic he chimed in. It turned out that he has a former colleague he used to work with that did the same type of surgery he did. He told me that he would be able to do the surgery if I wanted, but there would benefits to doing such a procedure closer to home, both for me and my caregivers. So he said he would call his colleague to see if I could get in specifically with him, and at an earlier date. The very next day (Friday) when I was flying home, the Mayo Clinic called regarding his referral. They were able to get me  in the following Monday.  My previous experience trying to schedule a consultation with Mayo wasn’t the smoothest process, and it resulted in an appointment 6 weeks out. To get an appointment the following business day was crazy. I guess it goes to show it’s not what you know, but who you know.

When we went to Mayo, the surgeon there outlined the surgery in detail. He indicated he would be reaching out to a thoracic surgeon to see if they believed the nodules in the lungs were also removable. The next morning he called me personally to let me know the thoracic surgeon agreed, and we could move forward with the first surgery, which would be the combination colostomy/liver surgery. Mayo is in Rochester MN and 80 miles south of the Twin Cities. The travel there is exponentially easier than other places we were considering. I still went on to Houston to meet with oncologists and surgeons at MD Anderson to see if they had a differing treatment option that should be considered. They came back with a similar recommendation, so we felt our best route was to continue with Mayo and be close to home when doing these surgeries.

There have been instances throughout my treatment when things have fallen together serendipitously. Paul and I have tried to embrace these instances and look to them as affirmation we were on the right track. There were two examples of this from our consultation at Mayo. First was when making the appointment with UC San Diego, I misheard the scheduler and wrote down the surgeon’s name as Dr. Cleary. It turns out the surgeon in San Diego was Dr. Clary. However, the surgeon he referred me to at Mayo was Dr. Cleary. What I wrote down initially turned out to be the name of the surgeon we would come to work with. The second was November 21. When we received our chemo schedule way back in May, I laid out all the dates and knew if we had no delays I would be done with chemo on October 12. Even in May I knew my colostomy bag would continue to be a pain in the ass, and a constant disrupter. I asked when the surgery to reverse the colostomy could happen. I was told I needed 6 weeks after chemo for the drugs to get out of my system before the surgery could happen. 6 weeks from that October 12 date is November 21. That dates was blazed in my head, and thought about every time I had issues with my colostomy bag. Flash forward to when we were notified of the chemo delay and new plans were made. All of these dates went out the window, until Mayo. Once we agreed to the treatment plan, the date they could do the combo surgery was November 21. Somehow through all of these changes, Tommy and his bag with still be gone on November 21.

Paul and I are relieved to come to a decision, but the process has been exhausting. As mentioned before, theory was far from reality. The emotional toll these consultations took was immense. The conversations talking about the details and weighing the options were so taxing. I am eternally indebted to the friends and family that have helped Paul and I throughout this process. Thank you for the calls, the little gifts, the funny texts, the well wishes, the prayers, and all the positive energy and love you have poured upon us. We love you too.