Recently a friend asked me when my next scans were going to be. Right around month 2 I get asked that question a lot. I have to admit, it always touches my heart that the people in my life keep track of my 3 month scans. It’s such a testament of their love and concern and never overlooked. Anyway, when I answered her that they would be the 3rd week in October, I also told her what I had been feeling. I told her that I was slightly more worried than I had been in a long time because I felt that I was living on borrowed time. This feeling had started to creep in, and I couldn’t shake it. Since the nightmare that had been 2013-2014 was far behind me, I knew how great I had been feeling and how well things were going, yet there was this nagging voice that kept telling me that my cancer had been quiet for almost as long as the longest period of time I have gone cancer free in the last 6 years.
Last Wednesday I woke up with a terrible pain on my side. It was a nagging, aching pain that was new. Being a crazy fitness instructor/fitness loving workout junkie, I often get muscle soreness, but this definitely felt different. I had also started to become slightly short of breath, nothing too serious but enough to make me question it, as well as a bit more fatigued than normal. I played the game in my head I always play… maybe it’s time for an iron infusion, maybe I’m not sleeping enough, maybe, maybe, maybe.
I was trying to see exactly where the pain was coming from the other day, and while doing that, I felt a lump. I knew instantly it was new. It also occurred to me that maybe the lump was sitting on a nerve. I got in touch with the nurse from my radiation doctor’s office ( and also someone who I happen to consider my friend xo) and she immediately moved my scans up. Well that happened yesterday and today I got the news.
My cancer is back. I kind of knew it was. I did, and I hate that I’m always right about this stuff, but unfortunately I am in tune with my body and my instincts are usually correct. This time, however, I wasn’t expecting all of the news.
I was expecting to hear that yes, the lump is cancer. Yes, it’s sitting on a nerve. I expected to hear, let’s remove it with clear margins, relieve you of that horrible pain you are having and get on with this fantastic life I’m having. Yea….. not so much….
I have a 10+ cm, apparently very fast growing monster tumor growing inside of my diaphragm. I saw the scans, indeed it is a monster. The lump on my back is kind of connected to the rest of the monster, but it kind of poked through a part of the ribs where the last surgery left a sort of opening. The monster is pressing on my diaphragm and spleen right now and seems to want to spread elsewhere according to the scan report.
This is the biggest tumor I have ever dealt with. It seems to be really aggressive like the last one that wouldn’t respond to chemo or radiation and almost killed me. Needless to say, we are all shocked and horrified and scared and every emotion possible.
Surgery, not possible. The last surgery left me with so much residual pain, 3 less ribs and if surgery was even attempted `it would mean removing more ribs, resecting my diaphragm and so much more. It would be much, much more of a difficult recovery than last time, which was a nightmare. I would be left in a state of not being fully functional, and my surgeon just doesn’t think there is a way to get this all and give me any kind of quality of life. He is the best and has saved me many times, and I know if he thought it was in my best interest, he would do whatever he had to in order to give me my life back. Again. ( Thank you Dr. D., you are one of my heroes, and I owe you the last amazing 16 months of my life).
So, what’s next? First of all, I am in severe pain. Oddly, the only time I don’t feel it is when I am exercising ( how many times do I have to yell from the rooftops that the best pain reliever is a good ‘ole blast of endorphins?!) My mast cell disease prevents me from taking much in the way of pain relievers, and Tylenol isn’t touching this pain. The mast cell disease has actually been pretty active lately, likely because my body is in attack mode from the cancer and the mast cells are releasing histamine in response. I have had several weird rashes lately, even one the other day from putting a heating pad ( over two layers of clothes) on my side where the pain is. I still have blisters and a bright red rash.
Back to pain relief…. one of the revelations I left with after the news today is the fact that this pain won’t just go away. In fact, it will get worse. I am going to try some nerve pain meds starting tomorrow and talk to my allergist about doubling up on some of my antihistamines, to try and control reactions, but I still fully expect my body to attack a new med. What to do… what to do…
Radiation is also not an option right now. Too big, too aggressive, and my history tells us the radiation doesn’t work on big aggressive tumors that invade my insides. At this point I may need radiation later for some pain relief, but right now we can’t take a chance of even that because it could exclude me from possible trials.
My wonderful doctor ( you’re awesome Dr. C. and I am so grateful for you) wasted no time making calls on my behalf. By the time I got home my phone was already ringing, and he has started the ball rolling on trying to get information about some immunological trials. I anxiously await the news, as this is my first choice right now. Chemo…. ugh… the thought makes me sick. It hasn’t worked for me in 6 years, and the thought of putting myself through that again just doesn’t appeal to me. Not yet anyway. I would have to see some real hope in it to put myself through that again. I never say never, and I’m not, I’m just saying I would rather pursue anything else.
I am also set to see a sarcoma specialist in Atlanta to get another set of eyes on everything. My doctor has already set that up, and I know she is tops in the field. There are some other things in the works. Fortunately for me I have some wonderful friends who unfortunately walk this path with me, and we all share the latest in sarcoma treatment. I am considering sending my records to another sarcoma doc in California who has kept my dear friend alive for 14 years. Her LMS acts very differently than mine, however there may be trials happening in other parts of the country that could be promising, and I don’t want to limit myself.
Having said all that, here’t the thing: The shit is hitting the fan. This is different, and it’s bad. Tears have been shed today….
I hate doing this to my family. My poor Pat. He is just everything good in my life, and I hate putting him through this over and over. I just want us to have our evening bike rides and chat about our days. I want us to plan for our beach condo and walk in the sand and ride in the convertible with the top down listening to bad 80’s songs or my boys CD, talking about anything and everything while he holds my hand.
My sons. My sons are doing exciting things. Their hard work is paying off. I so want to be here to see it all. I want so much for them and I want to experience it with them. I’m going to try and do that…. it’s getting harder and harder but I am going to give it my all. But I hate, most of all, giving them this burden. It hurts me more for them than I am scared for me. When I think of what hurts the most, it’s the thought of giving them even one minute more of worry and sadness and fear. They’ve had enough already. Enough.
This Friday night my sons have their CD release party here in Charleston. I have my outfit planned, cute boots shined up and Kate Spade bag ready to go. I am going to sing every word to every song, embarrass the hell out of them (even though they secretly love every minute of my attempts at embarrassment) and take it all in. I am going to hug all of my friends who come out and tell them I love them over and over till they know it’s true. I want it to be a party, a celebration of everything good in this crazy, fragile thing we call life.
This week, I found out my cancer is back. I found out things are not going to be cut and dry, and that I literally have to try and enjoy every single day I can, pain and all, right now while I still can, as much as possible as long as possible. This week I found out that I’m really glad I had the last 16 months of sheer joy, and that I am going to have to figure out how to get that back once again. I found out that it may, or may not, be possible.
This week I also saw my sons’ band name on the marquee at Madison Square Garden. Life is still so, so good.
Love you friends.
Vicki Kelly 