The good, the bad, and the what-the-heck

I want to thank everybody for all of the support and encouragement I've received with regards to my battle with cancer. I've provided little updates on facebook, but since I saw the oncologist today for the first time, it seems like an appropriate moment for a big update. Particularly since there have been some good things, some bad/disappointing things, and some things that came at me from out of the blue in the last two months.

Let's start with the out-of-the-blue/what-the-heck first. In September, I talked to a genetic counselor who, for various reasons, decided that she wanted to test me for a rare genetic mutation in addition to the standard breast cancer panel. So we did the test, even though I was a bit annoyed that she was scaring me with the possibility of this when the odds were so low that I had it. But she was right. I have the CDH1 mutation, which not only puts me at high risk for lobular breast cancer but at extremely high risk for diffuse gastric cancer. This freaks me out. Stomach cancers are all aggressive and very bad actors. And it's diffuse, so it's not like they can scan for a mass and find it early. You can do an upper endoscopy with random biopsies, and it just means you don't have cancer in those spots. The default recommendation for this mutation is to remove the stomach. This also freaks me out. How does one live without their stomach? (Apparently, you live just fine. A little complicated, but doable.) And how can I have this genetic mutation when nobody in my family in the last 100 years has had stomach cancer? We determined that the mutation is on my mom's side of the family. I have to admit that I know nothing about my extended family on that side; my sample pool is extremely small. So I've decided to do some digging into my ancestry to see if I can find any cancer on that side. (My great grandfather was diagnosed with stomach cancer back in 1930, but I'm not entirely convinced it's the same. But maybe.) Genetics are fickle. It could be that everybody else lucked out, this mutation only went down the line to me, and certain family members in my direct line died too early for it to manifest. Don't know. But it gives me something to look into while I talk to the medical professionals and decide what to do. In the meantime, we all agree that the more important thing to deal with is the breast cancer.

With regards to the breast cancer, things went pretty smoothly for the most part. I had an outpatient surgery to dissect the lymph nodes in mid-September. (Side note: Having a nuclear dye injected next to each nipple - not fun! Hurts like heck. But it lights up the lymph nodes so that the surgeons know exactly where to go.) They all came back negative for cancer. So I don't need radiation and the reconstruction could proceed as planned. I had decided on the deip flap reconstruction. It involves some vascular microsurgery, but then you have living tissue, and there are no foreign materials in your body. Surgery at the end of September was around 11 hours, but it went swimmingly. All the surgeons were happy. The tests on the tissue surrounding the tumors all came back negative for cancer. My arteries were pumping as they should. I spent two days in the ICU, one day on a regular floor, and then I went home. Yay! I have amazing friends who stayed with me (literally) day and night. But two days after coming home, we noticed a problem. I was in the emergency room first thing the next morning, where I stayed for eight hours until an operating room opened up. I was that extremely rare person - like, 1 in 1,000 - for whom one of the reconstructions failed five days after the surgery. That side was successfully removed, and I was back to recovering at home by the following afternoon (sans the two nerve blocker tubes/bags). A week and a half after that last surgery, the plastic surgeon removed all four drains. I could have hugged him. No more Dr. Octopus. It was awesome.

I've never had major surgery before, so I will admit to getting impatient with my body after a few weeks. While I haven't had much acute pain, there has been the constant pain of the nerves growing back plus discomfort/pressure, all of which I understand is normal. More than four weeks in, I got really sick of it. But I've noticed in recent days that I've had increasing moments when I'm not in pain. Much of today was without that constant tingling pain, just discomfort. So I'm heading in the right direction. I go to physical therapy on the 16th, where I'm hoping to get some good exercises and insights into what I should be doing to help my recovery. Of course, I couldn't be doing so well if not for the friends who stayed with me that first week (in and) out of the hospital and the friends who brought me supplies or company.  

I will admit that today was discouraging. I shouldn't be discouraged, but I am. I was hoping to get away without chemo and to be able to focus on healing from my surgery (12 weeks to reach full recovery), reconstruction of the one side that failed, and the stomach stuff. But no. I met with the oncologist today, and the decision is that I should do chemo. One of the things in the consideration is that, if the cancer comes back, it comes back metastasized. I'll have a port put in my chest in the next week or so. On November 18, I begin chemo, receiving it intravenously for 3-4 hours. Four rounds, every 3 weeks, which takes me until the end of January. They leave the port in for another six months, which I don't really understand. But I should be done with chemo end January.  

So that's the update. I want to thank everybody who offered help. If I haven't already taken you up on your offer, I may still, as I understand that chemo will make me extremely tired. But your encouragement has been hugely significant in helping bolster my determination to fight this. Thank you!

We always think there's time

I love to create to-do lists and spreadsheets. They keep me sane when I've got a ton to do. I strive to create some order out of the chaos so that I'm not constantly worrying that I've forgotten something. And yet, a part of me also assumes that I have time. When I left my mom's house right before New Years Eve 2019, I thought there was time. I thought I'd return to the U.S. that summer and have more time with her. That I'd take her to performances at the Kennedy Center, or that I'd convince her to take some of those trips to places she wanted to see. But five weeks later, she was gone, and there was no more time.

I thought that I had time for some of those final trips I was going to take before I left the Dominican Republic. I had new snorkeling gear, and I was going to finally take that trip to Bani and see the sand dunes and go snorkeling in Salinas. Maybe a last trip to Bavaro or to the north coast. But five weeks after my mom died, covid-19 came to the Dominican Republic. Everything was shut down, including the beaches. There was no more time.

Then it was time to get ready to move back to the U.S. I had an international move, a renovation of my condo in Arlington, clearing out my mom’s house and getting it on the market, finalizing everything with her estate that I had left hanging while I finished my tour, and starting a new position with my agency in Washington. I created my detailed spreadsheet of everything I needed to do from May to September and when I needed to do it. It helped. A lot. But I was also reminded of my inability to control time when covid resulted in everything taking a little (or a lot) longer or supply chains not working as I expected. I completed most of the things I was planning to take care of when I returned. I did all of the cardiology tests that the government helped me get scheduled. Those were a priority, because both my mother and her mother died around the age of 67 with enlarged hearts. I learned that my heart is average for my age and gender. In other words, I’m not the spring chicken I once was. But the positive is that I’m not on the same bad heart track that runs in my family. Those were the only medical appointments I got done last year, but cardiology was the priority, and I only had time for so much.

My new position at work is interesting. It was also very busy, as I spent much of the last year responsible for both my region of S Asia/Pacific and N Asia. It was busy but manageable. Then appraisal season hit, I had a ton of personnel statements to handle, and out came the spreadsheet again. I got through it successfully and then promptly handed off N Asia to my new colleague. And finally, I had time! My mom’s estate was wrapped up. I had a year in my new position under my belt, so I understood the cycle of work. I would start focusing on some other things, like finally getting my washer/dryer replaced so that maybe it will do more than just hot water. I would get nice blinds to replace the cheap blinds left by former tenants. I would get my estate documents updated. I would continue going through my old stuff and my mom’s stuff and get things more organized. And then my concept of the time available to me changed.

 

I felt a lump in mid-July. A large one. I was told to monitor it for two weeks. After 12 days, I contacted the doctor again. Within a day, I had an order for a mammogram. The following day, I got a mammogram and then a sonogram and then a visit from two nice doctors with a box of Kleenex followed by 3 biopsies – of two very concerning lumps and one lymph node. That wasn’t a good Wednesday. That weekend, I left for a week in Florida with dear friends. On Monday, I received the news that I had cancer in both breasts. Thankfully, that one lymph node was negative for cancer. The day after I returned from Florida, I went in for the MRI. I am very thankful for modern technology, but MRIs are not fun. It was nearly an hour, plus an IV for a color contrast study. The very nice ladies regularly told me to not move, which quickly had me worrying about the movement involved in breathing. Was this all for NOTHING because I couldn’t breathe more shallowly? I actually pressed the panic button once near the end as I was starting to spiral towards panic, but they convinced me that it was just one more scan, and it would be fast. Apparently, the scans all came out very clear. So, if anybody asks, don’t worry about breathing in the MRI machine. The MRI determined that I needed to biopsy another lump. One week later (this past Monday) was biopsy #4 and the consult with the surgeon. 

 

Here’s what little we know at this point. I have invasive lobular carcinoma, which is only about 5% of invasive cancers. Due to the size of the large tumor, I’m automatically stage 2. We won’t know stage and grade fully until after the surgery, but the surgeon does not expect it’s more than stage 2. It looks like I’m facing a double mastectomy. My surgeon is aiming to do the surgery in early September. It’ll be 2 days in the hospital followed by at least three weeks of recovery. Once we get the results of the tests on what they cut off during surgery, I’ll meet with the oncologist to talk about what’s next.

My new t-shirt

I have been greatly blessed with support and offers of assistance in just these few weeks as I’ve started telling people. I’ve also been seeking out t-shirts to inspire me. When I was doing those performance appraisals, I’d wear my Wonder Woman t-shirt. During this last month, I pulled out the storm trooper t-shirt, because they look fierce. One of my friends who has fought this battle recently told me that I’m now a cancer warrior. I like that word. Warrior. It’s active, not passive like other words people use. What I hear consistently from people who have gone through this before is that it will really suck for a period of time, but that I’ll get through it. I’m a warrior. That’s what I’m choosing to believe. Failure is not an option. Now it’s time to fight.