A new treatment plan:
A couple of days ago I had my post op visit with my surgeons and a treatment planning visit with my medical oncologist at MDACC. It had been 6 weeks since my surgery, 8 weeks since my last nivolumab treatment, and I had new MRI and CT scans. The visit went about as well as any I’ve ever had. Scans showed nothing more than changes consistent with my recent surgery, TIL harvested from the small active area of the tumor actually grew in the lab and is sitting in the MDACC freezer and can be used for treatment down the road. I was also told by my oncologists that I was free to be released from MDACC’s care unless I need to come back for TIL and they are just a phone call away. I have established myself with a local melanoma oncologist, Dr. Doug Johnson, who comes highly praised and is in very regular contact with Drs. Patel and Wargo.
Dr. Wargo took pictures of my arm because it was “fascinating” and we discussed her recent presentation of preliminary data, that I was a part of, related to the microbiome of the gut and response to immunotherapy (the take away was that better responders tended to have a more diverse gut microbiome, very interesting and considered the “new frontier” in immunotherapy research). I mentioned, per a discussion in my MM facebook group, that she should look at the vaginal microbiome in vaginal cancers and she smiled and said that she and my other surgeon, Dr. Westin, were already planning to partner in research on the microbiome and gynecological cancers. I don’t believe they knew each other before my surgical case came up. Dr. Wargo whipped out her phone and sent a text to her that I looked great post op and shared a picture we had taken together.
Dr. Patel agreed with the treatment plan that my new local oncologist at Vanderbilt had discussed. That is – a few more months of nivolumab every other week then a full body PET/MRI in the summer. If I continue to be NED (no evidence of disease – all the fingers and toes crossed) then we will discuss coming off of treatment entirely and going to quarterly scans/monitoring (and bye bye power port!). I told my oncologists at MDACC that I hope I never see them again (with a big smile) and they agreed. Although, they are happy and willing to contribute to the Mucosal Melanoma Awareness video and even asked if I would be interested in being on panels or involved in survivor research at MDACC. If I do see them again, I hope it is in that context alone.
I did not get to say thank you and goodbye to Dr. Westin, the gynecological oncology surgeon that partnered with Dr. Wargo, because we wanted to get home a day early and Dr. Wargo said I looked great and it wasn't necessary. However, I really hope to see her on non-treatment terms in the future so that I can do so.
A new reality:
I would like to stress, as always, that this is not over. Not by a long shot. With each new quarterly scan comes the reality that a reoccurrence is the MOST LIKELY outcome. However, with each new scan that shows NED, that likelihood continues to decrease. Dr. Patel said that three years NED (for me let’s hope that means January 2020) appears to be an important milestone as most reoccurrences occur within that time-frame.
This cancer and its treatments have so far left me with many scars and limitations but certainly not as much as many other people that I know of or know personally. I am very fortunate.
Some of my scars and losses are visible. I have a scar from my port on my right chest and still have the port in place. The other visible scar is from my recent surgery – it is only about 4 inches long and runs from my belly button straight down. My original surgery, called a radical vaginectomy, removed about a third of the upper portion of my vagina and sounds a lot scarier than it was. To be honest, I can’t tell at all. The worst part was the healing of my urethra because they have to create a thinned portion to get “clear margins” but it didn’t take long to heal using a catheter bag for a while. Really, the vagina is an amazing thing and after pushing an over 8lb baby with shoulder dystocia out of it, it could probably have used a bit of a rejuvenation. Though I am told it is very stretchy and built to accommodate birth and recover just fine, tell that to anyone who has delivered a baby vaginally and you will get a big eye roll.
I lost my hair. I wrote a blog post about this earlier. It's growing back in fine but so much more unruly when short! The waves, which we much more manageable when it was long, are just doing whatever they want to do. I'll be grateful when it grows out some more.
I have lost pigment! My skin has experienced a lot of pigment loss including vitiligo on my shoulders and arms and spots and halo moles around my torso. I keep getting strange rashes and keratosis pillaris patches and will probably have skin issues for a long time. My face, as I’ve mentioned previously, has lost all of its freckles, save on the skin around my eyes. Fortunately, I’m also told it has made me look younger, so I won’t complain too much on that account.
I have been blessed beyond belief that any pain I experienced while I had active cancer was rather mild and I’m almost completely healed from surgery and radiation now and feel almost no pain at all. I am exceedingly fortunate that the pelvic exenteration surgeries that used to occur for someone with my diagnosis (surgical removal of almost all organs in the pelvis including bladder, urethra, uterus, vagina, sometimes rectum and bowel) had gone out of vogue since there was evidence that it didn’t actually prevent reoccurrence, though I would have done just about anything to survive. As it turns out, it would have reoccurred in my pelvic nodes either way.
The greater losses, assuredly, are those that "might have been." I have certainly been schooled in the reality that I don’t really have a clue what the future holds for me but I do know what has been recommended to me (not to do).
I am at high risk for pelvic fracture due to the IORT (intraoperative radiation) directly to my pelvic side wall. The radiation oncologist told me to avoid contact sports and I joked that the only thing close to contact sports I see in my future is riding my horse. He chuckled grimly and said the only time he’s ever heard of pelvic fracture actually occurring after radiation is in “equestrians.” Great. So maybe my somewhat wild mustang mare that likes to throw me when she’s having a bad day is NOT the best idea. No more riding Chai.
It is recommended that I do not get pregnant again. In the beginning, this recommendation was discussed a lot with the maternal fetal specialist and others. However, I did what I could to prevent any doors being closed on the possibility, just in case, and now that I’ve had a good response to the immunotherapy and the discussion didn’t seem quite as pointless, I broached the subject again with my oncologist at MDACC. I asked if the recommendation is a red light or a yellow light and if there’s ever a milestone when it becomes a green light. While it’s very hard to say and generally people are told five years is a good rule of thumb, it’s more complex with immunotherapy. Right now it is a red light, mostly because I’m on a treatment that you can’t be on while pregnant. However, it CAN change to a yellow light after treatment, and possibly a yellowish green light in the future. Importantly, it will never be truly green due to the reality of the immune system changes that occur during pregnancy. Given that my whole recovery hinges on a highly active immune system, a suppressed immune system might give any lingering cancer cells an opportunity to take hold, causing a reoccurrence and putting me back in the exact same position I was when this whole thing started. Fortunately, we have James. And he has much “muchness.” I plan to write another blog about this in the future, with more detail and thoughts. But – this is already one of my longer blog posts and I don’t want to take up too much more of your time.
A new home:
Now that I’ve climbed out of my recovery trench a bit and allowed myself to feel the emotions that sidelined me after surgery I’m trying to figure out what my “moving on” looks like. For some, moving on means doing something completely unrelated to cancer. For me, it won’t but I'm still trying to decide what shape it will take. Moving on in the midst of ongoing treatment and expected reoccurrence is complex but still something that needs to happen for me to regain some sense of normalcy after a period of time when my health was even more than a full-time job. I recently applied for a post-doctoral fellowship at Vanderbilt and though I didn’t get the position I made some great contacts and got myself geared up to returning to work in clinical health psychology. I am so fortunate that my career choice and training prior to my diagnosis positions me so well moving forward to easily channel my experiences into my own work. I can give back while still getting back to myself. There aren’t many formal “post-docs” in Nashville for me but I believe I can build something great, meaning that I will need to be in the city a lot moving forward. But here’s the thing – Nashville is a growing city. I don’t mean there are new buildings popping up here and there. I mean that right now Nashville is a magnetic force, drawing people into it, and bursting at the seams while builders are scrambling to pile newer and bigger buildings on top of one another and it doesn’t show signs of slowing down. The small arteries of the interstates and roads into the city are strained and congested and underprepared for this growth. When we bought a horse farm on the edges of town last year it took a little over 30 minutes to make it into the city. The commute is now over an hour and growing.
Time is precious. If the past year has taught me nothing else it is to not take time for granted. Two hours of commuting each day is a big loss of time. Though we have always wanted to live on a farm and love being in the country, at this point in our lives we have decided that time is more precious and so we are moving in to the city. The farm can be our dream for another time. A new home, a new start. More time together as a family – that is the most important thing.
Please consider giving to the mucosal melanoma awareness video, we are only about $1,800 away from being fully funded! We have lots of MM patients and oncologists ready to be a part of it we just need this last bit of funding.