That is how long I spent in Cleveland on this most recent visit.
A visit that was supposed to be a quick procedure, receiving a few radiation treatments and setting up a schedule for chemotherapy at home.
It turned into 37 days.
But given what happened, I’m very thankful to have been where I was. Among the best doctors.
The recurrence was found on June 16 after a check up scan. Upsetting news, of course, but I returned to Illinois for a few days before a June 21st procedure to drain some fluid from my right lung.
Michael and I made the drive out there for the June 21st procedure, expecting to stay a few weeks – knowing we’d leave after I had had radiation and set up a chemo regimen.
The procedure went well, until the end of it, when my heart stopped 3 times.
The doctors assume it was a pulmonary embolism – a blood clot in the lung – but they couldn’t say for sure. The other assumed cause was that, in draining the fluid, the drain could have tickled my heart and caused the cardiac arrest.
We’ll never know for sure, but in that hour and a half, I died and was shocked back to life.
What we expected as an easy visit to Cleveland could have had a very different outcome…
I lost my short-term memory for a few days. Over the last few weeks, I have asked to hear stories of those days following the arrest. It sounds like it was very scary. I was told that I often repeated myself and had quite in-depth discussions with my husband about what to do if I were to die.
I had also forgotten that my cancer had recurred. When a nurse brought it up during discussion in the ICU, I am told that I got extremely somber and tearful to learn (again) that there had been 3 tumors found on my left ribs just one week before.
This unplanned episode caused delay to the start of radiation and chemo. I was discharged from the hospital on June 30th and joined my husband at the Ronald McDonald House. I was set up for 5 radiation treatments to begin on July 12, happening on Mondays, Wednesdays and Fridays.
I finished up on July 21 and then waited a few more days to have a scan to determine how well the radiation treatments had worked.
My radiation treatment was called ABC (Active Breathing Coordinator) SBRT (Stereotactic Body Radiation Therapy) radiation. Since the radiation was on my ribs, I needed not to breathe during treatment. Before treatments began, I was fitted to a blue mold and marked with tiny dots for proper alignment of the radiation machine. They also put a nose clip on and I was given a snorkel-like mouth device that would take my breath holds and create an average in which the machine would then hold my breath for me while radiation was being delivered. For each treatment, I had approximately 25 breath holds that measured at 20 seconds each. In the beginning, it was a bit hard to do, as I only have one lung, but with each subsequent treatment, it got a bit easier as I found my “zen” to enter into during the breath holds. Sometimes, you just do what you gotta do!
The scan showed a decrease in the sizes of the 3 tumors. With radiation complete, I was now permitted to enroll in the clinical study for the VIGIL vaccine, a vaccine made from my specific tumors to receive in conjunction with oral chemotherapy, which would be done at home.
For any medical people reading this, this is the link to the study. (https://clinicaltrials.gov/ct2/show/NCT02511132)
It’s a bit difficult to understand, so here’s the simplified version:
I take one chemotherapy pill and drink 3.5 mL of liquid chemotherapy on Days 1-5. On Day 15, I visit Cleveland to receive the new vaccine, Vigil, made with my tumor tissue (a vaccine created with my tumors when they removed my left lung in October 2016). This cycle repeats every 21 days.
There were 12 vials of vaccine successfully made from my tumors back in the fall, so as long as there is tumor decrease and I agree to continue in the trial, this schedule could extend into March 2018.
We’re all hoping for the best with this combination of chemotherapy and vaccine. It’s time to get rid of this cancer once and for all!
I have begun the chemotherapy and so far, so good – keeping those fingers crossed that the side effects stay away. I returned to Illinois on Thursday and I am now focused on recuperation.
While in Cleveland, my weight dropped significantly because I lost my appetite. I have yet to find much of an appetite, so that is my main goal – restoring weight and muscle so that my body is strong enough to tolerate the chemotherapy. Chemotherapy can sure take its toll on you if your body is not getting the nourishment that it needs.
My family has once again been lifted up in spirit by all of your prayers, good thoughts and well wishes – and we appreciate them more than you’ll ever know! It is my goal, one day soon, to be able to write a post to declare that I am disease free! Until then, we continue to appreciate your prayers – they sure help us get through the rough times and make it easier to appreciate the better times!
One of the positives of all of this was our time at the Ronald McDonald House. The House serves as a second home for families who have children dealing with illness, allowing them to stay close together, and I was blessed to have been accepted under the pretense that my illness had started at age 13. During our 37 days in Cleveland, we met many families through the House that had a unique story to tell. We joined these families for activities, meals and a lot of talking during the spare time we had. We grew to love these other house members like our own family.
During our stay, I was actually asked by the House Coordinator if I would be interested in writing a blog post from a guest perspective. It was a bit ironic, because the Coordinator was not aware I maintained my own blog. When asked, I happily agreed to write for them. You can check out the blog post here: http://www.rmhcleveland.org/stories/sarah-keeps-smiling
This road has not yet ended, and even though I’ve hit some roadblocks, there’s still a lot of road left to go. It won’t always be easy, but it will always be worth it. I believe that 100%.
Thank you for continuing to follow my journey!