OneYear and Counting

Aug 6, 20247 min read

It seems so crazy to be feeling as well as I do today knowing how bad things looked just over a year ago. Last year on July 23 we left a family reunion early to go to the ER and I ended up being admitted to the Huntsman Cancer Institute for what ended up being a 9 day stay. I had surgery on July 27 after it was discovered that they couldn't see much of anything via a scope placed laproscropically the day before. The plan for that day was to get a lot of tissue samples to biopsy but they only ended up getting a couple of samples because that's all they could get to easily. It was also July 27 that is was confirmed that I had cancer though they didn't know immediately which type. I was discharged on August 1 with surgery follow-up appointments scheduled 3 weeks later.

As some of you may recall, the first week after being discharged went as expected - not much of an appetite, growing pains getting used to having an ostomy bag, and what felt like never-ending medications and just wanting to sleep all the time. I felt a bit better for a few days after the first week home and then things went downhill quickly again. We showed up for my post-op appointments on August 21 and only ended up meeting with one of 3 doctors that I was scheduled to meet with that day. My visit with Dr L only lasted about 15 minutes as she very quickly put two and two together with the symptoms I was exhibiting at the time - some new but most similar to what I had been experiencing prior to surgery- and instantly sent me to Acute Care for further labs, scans, and tests. The scans showed that my cancer was metastatic - meaning that it had spread to multiple places - and I was admitted again for what would be another 10 day stay.

In the first few days I had a lot of conversations with different doctors all of different specialties as my cancer was/is very rare and after many tests there still wasn't an official diagnosis. Dr K was one of those doctors and she was the one I ultimately chose to continue my care. The day of my first round of chemo went so well that the hope was me being discharged just a day or two later. But, then the nausea hit and it was bad enough that I didn't keep anything down at all for a few days. Dr K was also the one who gave me the prognosis of about a year (which was on Aug 24 by the way so I'm so close to being past that year mark 😊) with treatment. She was a bright light during a very hard conversation as well as through all the days that followed. I can't think of a better way to describe her but I have no doubt that she is the one I needed to have that conversation with and to experience my first round of chemo with as well.

I was discharged once more on Aug 30 with the next round of chemo scheduled a few weeks out. It was about a week later that Dr K called to say I had an official diagnosis (soft tissue sarcoma) and that I would need a different oncologist to take over my treatments moving forward. That oncologist was Dr F who is the one I have been meeting with far too regularly since. We met Dr F just a couple of days later and then started my 2nd round of chemo about a week after that. So, things moved very quickly once they knew what type of cancer we were dealing with. There are about 100 subtypes of soft tissue sarcomas and mine, which is more specifically a retroperitoneal sarcoma, is one of the most rare. So, that meant that the hope with any treatment was that they would at least maintain the current state of my cancer as there is so little data to go off of for anything regarding my type of cancer.

Now, being 20 months since the discovery of the cyst that started this journey for me I can look back and appreciate everything I have been through - 3 surgeries (soon to be 4), a cancer diagnosis, being given a prognosis of a year, 3 picc lines, 1 IJ line, a couple of DVTs, 2 port placements, around 60 nights spent in the hospital, 7 rounds of chemotherapy, 6 doses of immunotherapy, way to many scans, labs, and appointments, and a partridge in a pear tree. My body has been through a lot and has fought hard. All that to say how grateful I am to have gotten through it all as well as I have.

After meeting with both Dr F, my oncologist, and Dr L today I have a lot of good news to share. The most important thing is that my tumor has shrunk yet again in comparison to the previous scan. So, we now know for sure that my cancer is responding amazingly well to immunotherapy which is a wonderful thing to know. In the last scan my tumor was measuring 1.4cm X 1cm and as of the scans I got yesterday it is 1cm X 0.7cm - insert all the excited emojis here.

Dr L, who was one of the surgeons that assisted in my surgery last July, said she is both amazed and absolutely ecstatic that we are now just over a year from that day and making plans for reversing my illeostomy (ditching my ostomy bag), removing the tiny bit of tumor that is left, and making plans beyond that. Both her and Dr F said they consider me to be a miracle case at the very least. Hearing that no one truly expected any treatments to do much for me makes me that much more grateful for all of the miracles and the people that have gotten me to this point.

Dr L was the surgeon chosen long ago to do my surgery so that HIPEC could be an option if it is decided as being a good form of attack. As of today HIPEC being done during surgery is still very much up in the air for a lot of reasons but mainly because I have already responded to other treatments far better than expected and I am feeling so well right now. That being said Dr L is still very torn on that ultimate decision. She told me that HIPEC hasn't been used much at all with sarcoma cancers so with my cancer being one of the most rare as usual it means there is very little data as to if it would really even be beneficial or not. However, my cancer was also so aggressive right off the bat that that makes her wonder if it would be worth doing HIPEC to hopefully give my cancer what could be a good, strong final punch before discontinuing treatments.

So, as of now the plan is for Dr L, Dr F, and Dr D (the lead surgeon in my surgery last year) to get together to discuss the possibility of HIPEC. Then, Dr L will present my case in a tumor board next Tuesday to get additional input from a lot of other oncologists before making a final decision in regards to that. My surgery is scheduled for October 10 - yay for spending our anniversary in the hospital 😬 . I will be in the hospital for a minimum of 2 nights for just the illeostomy reversal and resection of my tumor. If it is decided to do HIPEC at the same time then my stay would end up being 7-8 nights. Full recovery after surgery, again depending on whether or not HIPEC is done, will be anywhere from 4-8 weeks.

The best surprise of the day was Dr F saying that my last dose of immunotherapy will be on September 19 with scans to be done regularly after surgery to keep an eye on things. My recent scans have all looked amazing but part of surgery will be Dr L looking absolutely everywhere to make sure there are no signs of disease aside from my tumor since cancer is tricky and it's not all too uncommon for things to be found when they are looking at things in person. So, prayers that there will be no other signs of cancer found would be absolutely wonderful and greatly appreciated. I just had a dose of immunotherapy today and it is the best feeling knowing that I am very likely down to needing just one more dose for what will hopefully be a very, very long time.

The nurse who administered my infusion today told me a couple of things that show just how cool our bodies are. With every infusion they start and end by flushing your port with saline to ensure that it is functioning properly. Ports are connected to the main artery just above your heart so the saline goes through your heart first and then goes through the rest of your body and of course back to your heart again. It only takes about 2 seconds for you to taste and smell the saline and just another second or two later it is already back to your heart. He said the average person has 2500 gallons of blood pump through their veins every 24 hours and that athletes who are actively training can pump around 1000 gallons more worth of blood than that in a 24 hour period. Our bodies are so amazing.

Being here at the hospital today and hitting year marks for different things right now had me noticing people more than usual. So many who look so sick and it is crazy to me that I was feeling and looking that sick a year ago. There are so many who don't have such drastically good results with treatments in the amount of time I have been fortunate to experience them in so I am extremely thankful for how well everything has gone so far. I hope all of these experiences help me continue to notice others more and to empathize better with anyone going through their own challenges whatever they may be. I'll end this update here and will let you all know how surgery goes when the time comes. Until then I hope you all have a great end of the summer and a wonderful fall as well.