Rick’s Story

Site created on November 12, 2019

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Journal entry by Jenny Muffler

First, if you're reading this, we'd love to thank you for your good wishes, prayers, concern and love over the past several months. It seems like we've told this story a million times by now, but each time we tell it, we still can't believe it's "our" story.  

We're going to try to recap the events of the last few months to try to keep everyone as up to date as possible.  If we haven't answered your emails, texts or phone calls, it's not because we don't care, it's just we're both worn out and this site will hopefully keep you up to date with what's happening here in Rockville. 

Early July, Rick suffered extreme back pain for a few days until it got so bad he asked to go to the ER.  They treated his pain and sent him home with no explanation as to the source of the pain.  Less than 24 hours later he was back in the ER with the same back pain and couldn't lay on his back at all.  The ER took a CT scan and the attending physician came back to the room with the news " it doesn't look good. the CT scan is showing a tumor that is suspect for metastatic cancer and we'd like you to see an oncologist ASAP".  They gave us the name of a doctor who we were able to see within a few days.   He immediately told us not to be concerned with the results.  "that's just a preliminary test, no need to be concerned".   He scheduled an MRI which also said suspect for metastatic cancer.  Again we heard the words, "that's just a preliminary test, no need to be concerned".   He ordered a biopsy which came back negative (later we found out it was "inconclusive" and then told Rick to come back for a PET scan in October. (2.5 months later)  Not knowing any better, we just went along with everything the doctor said.  I mean, he is an experienced oncologist, he should know what he's doing right?

Fast forward to the beginning of September, Rick started having extreme pain in his left rib.  We both thought he probably cracked a rib throwing mulch outside one weekend.  But the pain persisted, so we went back to the doctor.  Finally he ordered a PET scan.  The results showed a large tumor near his kidney with many cancerous lymph nodes surrounding it.  It also showed it had metastasized to his left rib, right hip and back.  Not surprising,  the doctor didn't discuss this with us, we had to do the research ourselves after we got the report off the internet.  

Doctor #1 said Rick needed an emergency laparoscopy to get a better biopsy. The surgeon said it couldn't be done, he would need major surgery to get to where the tumor was.  A few days later he had the surgery which confirmed metastatic cancer.  It took over a month to get the results back for the primary source of cancer-- it was named metastatic urethelial cancer. Basically bladder cancer (which none of the doctors seemed to agree on, even after the pathology report came back.)

While in the hospital Rick received many different diagnoses from many different doctors.   It was, and is still so difficult to understand why there were so many people weighing in, but no one seemed to agree on anything.   Finally the oncologist visited after 4 days and told us about the PET scan.  We both sat and listened, although we knew the results all along as he had them prior to the surgery and he just never chose to share them with us.  It was at this point, we knew we needed to start searching for a new team of doctors.

At his follow up, Doc #1 told Rick he would have to do 6 rounds of chemo, then they'd retest him to see what the treatments had done.    We told him we were seeking a second opinion and we never went back.

Fast forward two weeks later we were sitting in a highly recommended physicians office.  We had a great feeling about Dr. #2 from the very beginning.  He hooked us up with an amazing team of doctors from the start.  Radiology, psychology, palliative care etc.  We finally felt like our voices were being heard, our questions were being answered and they were taking this seriously.  No more words like, "you don't need to be concerned".   He was concerned, and rightly so.  This was the first time we heard the words "terminal cancer".  We knew it wasn't curable, but hearing the word "terminal" put a whole new perspective on things. 

Dr #2, said he wanted to skip chemo treatment due to Rick's already advanced stage, so he suggested immunotherapy alongside radiation to help control the bone pain.  As of today, he's had one immunotherapy session and one radiation session.  He'll do two full weeks of radiation and 1 to 2 more immunotherapy sessions, then they will test him again to see if there are any changes.  

When we asked how long he would have to live with no treatments, the drs best guess was 2-3 months, but said he's had some great success with immunotherapy with people living an extra 1-2 years, so we are praying it will work for Rick.  We are taking one day at a time and looking at each and every day as a blessing.

We have been truly blessed throughout this journey.  So many friends and family members have stepped forward to help in our time of need. So many strangers we've met in the past month have given us hope and healing for our souls.  Rick received treatment from a friend in FL who specializes in natural healing and the exercises and body realignment have given him some pain relief.  He has also seen our acupuncturist for additional pain management. 

We may not know how long Rick has left on this earth, but this journey has made us both very aware that NONE of us knows how long we have or when our days will come to an end.   We are secure in the knowledge that God is in control and we have faith that He will see us through these tough days and will ultimately lead us both to our heavenly home in his own perfect timing. 

For now, Rick has about 3-4 good hours a day where he's up and alert. He sleeps most of the rest of the time.  He's lost 35 pounds and does not have much of an appetite.  If you were to see him during those good hours, you'd never even know he was sick.  Once his body gets tired or the pain meds wear off, he crashes and needs rest in a hurry.   He is managing the pain (in his bones) with high doses of pain meds, medical marijuana (gummy bears)  and lots and lots of rest.    His sense of humor is still the same as always,,,,hence the name of the site.  "The Farewell Tour".  He jokes about it, because in all honestly, we "have to" in order to stay sane and not be focused on cancer 24/7.

Thanks for following along and we truly appreciate all of your prayers.   We'll post more as we have more info.
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