Friday, January 27, 2017

A Cold War

 It was one year ago today that I got a call from my OBGYNs office requesting that I come in immediately to speak with my doctor. Living far away I assured them that I would not be able to make the drive before the close of business. They told me to come any way. It was then, for the first time, that I realized there might be something seriously wrong. That was the day I was diagnosed with mucosal melanoma. To say that a lot has happened in the past year is a gross understatement. Despite the odds, however, after many scans, biopsies, failed treatments, surgeries, scars and side effects I find myself today with no evidence of disease (NED)- that coveted state of affairs in the cancer world that has come to replace the term "remission" as a more accurate way to describe not having visible cancer. 

I was in the hospital for several nights last week following my successful surgery. Now that I have returned home to heal with instructions to take a break from treatments for the next month I find myself faced with a new challenge. 

What do I do with the fighting energy when the fight is over - at least for now? 

I thought I would feel boundless. I imagined euphoric dancing in the pastures around my house as wildly as my healing scars would allow me. I imagined diving head first into my new life with hope for the end of my cancer and an unbridled passion for making good things come out of my experiences. I looked forward to excitement for all that I can tackle with my new free time with a break in the treatments and its side effects. 

Instead, I find myself feeling just- limited. Limited by the surgeons' warnings to not to move too much or too fast, not to lift and play with my son. Limited by my well-founded fear that this thing isn't over and that celebrating now might at best feel ingenuine and at worst jinx the good news. Limited in my list of things to DO. 
After months of constant travel and treatment and monitoring and worrying I was in high gear attack mode! Every thought that I had was in the interest of prevailing, strengthening, fighting and never giving up. I was J.B. the Conqueror, up against the mightiest of foes! But, now that the foe is badly wounded I find that I reflect not on what I have overcome or the strength that I have gained but on my own wounds.   I had expected to take this time to look back and smile at all the good that has come of this challenging year. But instead I find myself feeling levels of anger and sadness and loss that I hadn't allowed myself to feel when I was the inspiring Warrior at Arms.  
I have lost things. I have lost time, health, dreams, a blissfully ignorant feeling of security, and worst of all I have lost people. 

I'm charged with healing now and becoming whole but I am feeling rather broken. 

It's hard to feel triumphant when there remains so much uncertainty about the future. There is no finality where I stand, and there is no fight to occupy me. 
We are in a cold war now. And I am trying to recognize and to adapt to the new surroundings. I've read about things like survivors guilt and the difficulties of survivorship. I never quite understood them before but I feel I'm getting a taste now. 

There will be celebration. There will be joy. But there will also be a lot of other things. And that doesn't make me weaker or mean that I've lost. It's just another, less visible, battle scar. 

Thank you all for being there for me during this wild and crazy year!!! 

Sunday, January 22, 2017

The war rages on

The battle is over. My body is waking back up after being put to sleep, the pain that followed the violence is subsiding and my wounds are softening and healing. As I get back to my normal diet and activities and return to myself I can now afford the mental energy to reflect back on what has happened here and reach back out to all of you. 

I went into surgery on Wednesday in the midst of a heavy storm. The burden of the clouds was hastily released onto the city and the unprepared roadways swelled with the rain water. We played cards to still our nerves as we waited for all the members of my surgical warrior team to make their way through the panicked city and find themselves ready to do battle. At this point all we knew was that the surgeons would place a scope through my navel and look around instead to see the extent of the cancer in my abdomen. If (and this is a very big if) there wasn't extensive disease they would move forward with a surgery to remove some of the tumor for TIL, a cutting edge new therapy available here at MDACC. They had specialists in place for any number of scenarios and planned to remove as much as they could. I was told it could take up to 6 hours. Once everyone had arrived I was dressed for the occasion and tagged on all four limbs then rolled into the room. I smiled up at the nurses as the fluids reached my veins. Then I was asleep.

I've had surgery and medical procedures that involve general anesthesia before and I was always struck by the distinct feeling of waking up in a complete state of disorientation. Coming out of a dreamless state and waiting for my neurons to fire and remind me that I am a person and that I was once alive and that I still am and then the other details find their way to me one by one. This time was different. I had a dream. I don't remember the dream but I remember waking up smiling and fully aware of who I was. The first thing I looked for as I pulled open my heavy eye lids was to grab the image of the clock on the wall as I rolled away. 3:38. Too long to have just been a scope and close up. They did the surgery. I smiled again and let my eyes comfortably close again, sure I could handle any news that might come at this point. I recall a doctor placing a hand on my knee. I opened my eyes to hear him saying "...went very well, you did great..." I had many questions but only the will to nod my head and smile. I kept my eyes mostly closed but didn't attain sleep again, instead contenting myself with attending to the murmurs of the nurses around me and piecing together the snippets of information about me that they shared with one another. 

I was in recovery for a few hours before they let my family come back and see me. I remember inquiring about the burning pain in my arm and requesting that someone bend it for me as I couldn't move my limbs of my own accord. The obliging nurses were there and immediately responded to my every need. I was nauseated, as expected. A nurse shoved an alcohol soaked pad under my nose, which I violently rejected (no, worse, worse!). I then noticed and inspected the various painful and sore spots - surveying my battle wounds.   When my husband and sister were allowed back they were full of smiles and I finally mustered the strength to ask for details.

According to the surgeons, the scope showed nothing else concerning. They made a long midline incision in my abdomen and found the tumor. It had an impressive network of vessels running to it, cancer loves and needs ample blood supply. There were no large vessels involved so they decided to remove the whole tumor including the vessels that it had taken over. Once a tumor has been attacked with immunotherapy/the immune system it can become somewhat "sticky" and it can be hard to "liberate" from the areas. The team noted some microscopic or suspected microscopic metastatic areas in the sticky parts where the tumor had been so they brought in the radiation oncology team to blast these suspicious areas. A vascular surgeon had also been brought in to help with "liberating" the tumor and to seal off the vessels while my surgeon took the egg-sized mass over to get a look at it. She needed to take some of it for TIL and the remainder for pathology and research. When she cut into it, however, it appeared to be almost entirely necrotic (aka dead!). She said there was 5% or at MOST 10% active tumor left, which should be able to be used for TIL harvest. They would investigate the active areas to see if the immunotherapy had stopped working in those areas or simply hadn't had the time to work. The jury is still out with that one, but overall - what a wonderful surprise! At the last scan it appeared to be growing so we thought it was possible the nivolumab wasn't working at all.

Recovery has been seemingly long and arduous although the distance covered since Wednesday has been impressive. Mostly, the issue has been pain control. We did the usual song and dance of "narcotics don't work for me and make my stomach hurt" "really? just try this one" "nope, not working and sick" "okay how about this one" "nope, same awful thing." And on an on until finally my bleeding risk dropped and I was able to take some ibuprofen. Now I'm up and hobbling around with the help of my belly wrap. I have been freed from the IV pole and I'm now just waiting for my blood counts to return to normal and then I will be released to the care of my family back in Tennessee.

My next planned treatment has been cancelled to give me more time to recover, physically. We need to keep on top of my immune system because even though all visible cancer has been removed or blasted I still have mucosal melanoma cells in my body and blood stream.  The good news is that I can likely receive much of my next treatment at home in Tennessee. From here it will be scan, wait, scan, wait, scan, wait...

The battle has been won! And now- on to win the war.

Wednesday, January 11, 2017

Pre op visits and surgical plan

I'm finally rested after two busy days of consults and preop visits for my upcoming node dissection on 1/18. Whew! What a whirlwind, both physically and emotionally. 

Overall, the team is ready to go and there are specialists in place for anything foreseeable that might come up, which should allow for a good resection with no hesitation to remove or blast things as needed. This is all barring any extensive disease not seen on the scans when they do the initial scope.

  I met with:

 (1) Urology, who will be putting in stents to help visualize and protect my ureter during the operation. It will help them see it to avoid damaging it, and will also enable them to move it out of the way if they want to radiate and area. This surgeon (Dr. Pisters.... 😆), will be on standby to repair or remove part of the ureter if needed. And won't be shy about doing it! 

(2) Rad onc (radiation oncology), who will be available to blast any areas that the surgeons suspect might have local microscopic mets or any area they can't safely remove that still has a piece of tumor on it. The said it will add up to one hour of operating time but is so focused they can target and area as small as a pencil eraser while moving other organs out of the way! 

(3) A vascular surgeon (Huynh), who will be on standby if the tumor is more involved with my artery/major veins than the imaging suggests. One big fear going into these appointments was the ultrasound to check for vascular involvement. Overall, I have very healthy veins and, while the tumor has a "good" supply of blood from some of the smaller vessels, they plan to remove those with the tumor and said that the rest of the vasculature in the area should be able to take over the task, no problem. Should the tumor be move involved than it appears, she will be available to come in and remove and repair it. 

(4) a Gynological surgeon (Westin) who will be one of the two primary surgeons removing the node tumor and any other suspicious areas. She will be deciding whether or not to go ahead with a surgery after the initial laparoscopic imaging. 

And (5), the melanoma surgeon and very active researcher (Wargo) who will be using part of the tumor for TIL treatment for me down the road (assuming the immune cells replicate) and part for several of her many ongoing research projects. She will also be taking a stool sample that will be put into a mouse to recreate my "biome" as part of a study comparing gut bacteria to immunotherapy response (a new and promising frontier in immune therapy research). 

This team is 4/5 female (power to the she!) and was assembled with a LOT of pushing and fighting on the part of my medical oncologist and also myself. It is not how things are typically done but they are all happy to be a part of it!

We are all so hopeful that the scope doesn't reveal widespread pelvic mets not seen on scans - that is the biggest foreseeable hurdle, in my opinion. If they DID, they would try to take some for TIL (laparoscopically) and then radiate the area. BUT, we are hoping the nivolumab has kept doing it's job and that I can heal up and resume this treatment soon after. The surgeons are pulling for holding off for 2-3 weeks on the immunotherapy post surgery but Patel is pushing for one week out (since I'm skipping me pre-surgery dose on the 16th). It sounds like it will depend on how I'm healing. I don't know yet when my next imaging and restaging will be, we will discuss that after we see what happens in the surgery.