DHMC

6 Weeks Post-Op

Today is 6 weeks since my surgery. Physically, that means I’m healed. Mentally, it means so much more.

My surgeon told me I would be healed in 4-6 weeks. What that means is that tissue has started to incorporate the mesh into my body and the incision is a securely closed scar. It means that I am no long at risk of popping a suture. It means that I can start to resume a normal life.

Start to resume.

It does not mean I am totally back to normal. I am still in a healing process that is beyond the surgery. My muscles are adjusting, my range of motion is increasing, but I am still limited. I can do some warrior yoga poses now and quicken my walking pace, but runs are still 6 more weeks away, as is any attempt at a routine yoga class. Cycling is on hold for now too, as is lifting anything more than 10 lbs. After that 12 week marker I’ll be able to resume more movement as long as it doesn’t require quick, hard action from my right side. Think of someone throwing a ball and saying “think fast!” and having to grab it with my right hand. I can’t do that. Yet.

Which is why I’ve set the personal goal of learning how to play tennis. Tennis is pretty much the antithesis of what I’m supposed to be doing right now, especially since I’m right-handed and the tumor was on my right side, so I think the day I can play tennis is the day I’ll be fully healed. Apparently that is a 9-12 month goal.

I had my last doctors appointments on Thursday (for now). Four appointments in two days, I covered everything from Physical Therapy to a chemo talk with the sarcoma expert to what the eff is the sudden rash that showed up and how to get rid of it. It was exhausting, emotionally draining, and, in the end, wonderful. The odd rash that showed up was a delayed reaction at 5 weeks to the glue – strange to everyone who saw it – and is going away with the strong cream the dermatologist gave me. My PT was thrilled at my range of motion and was as happy to give me some yoga to work on as I was to be able to do some yoga.

The sarcoma expert and I talked about the decision to not have radiation or chemo, why chemo would be the choice in the future but why we should avoid it, and the idea of talking to a familial cancer specialist. Chemo is not as effective on synovial sarcomas as it is on other types of cancers, and it could actually give me a different kind of cancer in the process. It’s not worth it for someone my age who had the surgical results that I had. According to a metric devised by some doctors at Memorial Sloan Kettering, I have an 80-90% chance of staying tumor-free. That is fantastic news. Of course it could always come back, and in more places than just its original home, but at least the odds are in my favor. It’s most likely to recur in the first 3-5 years after surgery, hence the close monitoring. I have a follow-up MRI/CT appointment in January. At this or my follow-up PT appointment, I will see a familial cancer specialist. Since my grandfather also had a sarcoma, it’s possible I have a gene that means I’m more prone to getting cancer. We will discuss genetic testing to see if I have it; if I do, I’ll have to be tested for all kinds of cancers for the rest of my life. I’ll deal with that when I need to.

For now though, I am free. I can leave Vermont, I can get on a plane, I can get a job, I can move on with my life. This is a momentous mental shift. For months I have been waiting – waiting to find out what I had, waiting to schedule a surgery, waiting to heal. Even before the waiting began was the decision to return to the United States to deal with Tristen. Ever since he first appeared 7 months ago, my life has been dominated by Tristen. And now he is gone, really gone, and my life is mine again.

Vermont was the best place to go through all of this. The support from my family has been incredible, the tranquility of the setting perfect for healing, and the doctors and hospital experience at Dartmouth-Hitchcock Medical Center the best I could have ever hoped for. And in the grand scheme of life, the three months I spent here dealing with my sarcoma will seem like the blink of an eye. But I will forever be grateful to everyone here. Thank you for getting me through this.

I’m Home

The surgery went well. At least that’s what they told me. All I knew when I woke up was PAIN. SERIOUS PAIN.

People said I would wake up from the anesthesia (I had general, so I was totally out) and not even know that the surgery had begun. I wish this was the case. I knew very well that something had happened to me. I opened an eye so the nurse would know I was awake, it was my only hope of contacting her. I did not remember there was a call button on my bed. I didn’t even know anyone had told me that. My eye move worked though and when she came over I was able to get out one word: pain.

She wiped my tears and pumped me full of something, lots of numbers and letters I had no hope of understanding, and I felt like I was floating on a cloud being showered in tingly confetti as I drifted off to sleep.

After a couple of rounds of coming to and passing out again, a swap out of the epidural they had given me for a much higher dosage (pregnant women heed my word: the epidural is a wonderful invention, get it), and my first and hopefully last experience with voiding in a bedpan, I was able to finally leave the recovery area and move to my room. My parents saw me there, filled me in on some of what my doctor told them and life outside the OR, and I fell asleep in the middle of the women’s gymnastics beam event final.

The first night went surprisingly well. In between vital signs checks, IV bag swaps, and pee breaks, I slept steadily the whole night. For my 5 am bathroom break I even managed a little walk to the neighboring reception desk and back. In normal life this 20 yard shuffle would be an embarrassing attempt at movement, but 12 hours post-surgery it was an accomplishment. By the time my doctor came to see me, around 9 am or so, I was sitting up in bed watching TV, having already consumed a breakfast of scrambled eggs and toast.

Then she told me it went well. They were able to get all of Tristen out, cleanly. He was, however, larger than anticipated. Instead of sticking to his home in my outermost muscle, he set up shop in the neighboring #2 muscle as well, so they had to take some of that one out too. Good news was that he didn’t touch the #3 muscle or my rib at all. Bad news was I now have 2 pieces of mesh in me, one in each muscle, and a permanent convex side. What used to be a huge bump has now become a sinkhole.

Now we wait for pathology. They will measure the cell sizes of Tristen and the margins of the muscle/tissue extracted with him, and that will determine whether or not I go through radiation. I’ll know in 7-10 days.

After our chat I talked to Physical Therapy, who taught me how to properly get in and out of bed so I don’t use what’s left of my abdomen muscles, and the Pain guys, who decided we could turn off the epidural and see how I did just on Oxy. Apparently I did just fine, and by 5 pm I was discharged and on my way home.

This does not mean I’m all better by any means. I still have a drain hanging from my side leaking red fluid that has to be emptied and measured consistently. As soon as it’s less than 30 cc for 2 days straight I can remove it, but we’re still seeing 75 cc so it’ll be a few days. I still have to take Oxy and Tylenol or Ibuprofen every 4 hours, although I’ve gotten it down to 5 hour intervals and will continue to wean myself off of it. And I still have to make a concerted effort to breath deeply, take shuffle walks every few hours, and shower. But at least I can do this all from the comfort of my home.

My family has been amazing. From 3 am pill doses to tetris pillow configurations they are there for me above and beyond. My parents, my sister, and her husband have all made this so much easier to bear, a thank you can’t even begin to cover my gratitude. My friends, I’m sorry I haven’t been near my phone to thank you for your support too. From the beautiful flowers that made it to my room before I even did to the endless goodybag of candies and trashy magazines, you guys are seriously the best. And to everyone who reached out to me after my last post, I am amazed at the wonderful, kind-hearted people that I have met in my life and thank you all for your words. They meant so much to me.

I’ll continue to update as I find out more and as the healing process continues.