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10/2/2016 Latest post:
So this is the down and dirty version of Jeff's story, written from the perspective of his youngest daughter, Shelley. Pieces of it may be slightly askew, but you'll get the general flow of the story and the journey that lies before us.
Jeff was diagnosed with Interstitial Cystitis (a chronic bladder which causes frequent pain and pressure in the bladder) approximately four to five years ago. Annoying and painful for sure, but in the greater scheme of things, not a huge health issue and one that he learned to manage and maneuver life around. During frequent follow-up care with his urologist, in 2015, lesions were found on his bladder lining which were indicative of non-invasive bladder cancer, all superficial in nature, stage 0. The lesions did not penetrate the bladder wall so when he would have them removed, it would be similar to having a cancerous mole removed from the skin. Not a huge heal. He began the recommended treatment of BCG therapy which is where a solution of the Tuberculosis vaccine is injected directly into the bladder in hopes that the immunotherapy drug will trigger the immune system to get rid of the cancer cells. This method worked for a period time, but then he began to have recurrent lesions appear (all superficial in nature) and it was recommended that he begin interferon therapy (which is another form of intravesical therapy where drugs are directly instilled into the bladder to help trick the immune system into fighting off cancer cells). This type of therapy was very difficult on Jeff and though he endured it, he did not tolerate it well. He became very weak as a result of the therapy and one day in February of 2016, he lost consciousness while alone in the shower and fell. He was curled in the fetal position, in his tiny stand-up shower enclosure for approximately 20 minutes until he regained consciousness.
Jeff has a chronic, genetic condition, called Arthrogryposis. This is a rare disorder where two or more joints are contracted (stiff and shortened) and the person has limited muscle tissue and range of motion. It presents similar looking to cerebral palsy, where the legs are contracted, thin and always bent...resulting in a limp. Jeff has maneuvered through life with this condition and has done well for himself physically, but with aging, the condition presents some challenges. Curled up in the shower during that fall, with his fragile joints forced into positions that they were not typically used to being in, was not good for someone with Arthrogryposis.
The winter wore on, Jeff finished the interferon therapy and continued to follow up with his urologist. He was officially declared in remission in April 2016. However, he was beginning to functionally decline and we all attributed it to the trauma of the fall associated with his Arthrogryposis. He started physical therapy which became short lived because there was only so much they could do for his decaying joints and it was decided that he would undergo a double hip replacement in October of 2016. He hobbled through the summer, endured horrible hip pain and declined in function more and more.
In late August 2016, he visited urology for his three month checkup...the bladder looked the same as it always had, with chronic inflammation and irritation but was "clean", no lesions were seen. Jeff and his wife Diane live in Pittsburgh and his daughters and their families live in the suburbs of Philadelphia, 300 miles apart. He came to Philly to visit us just a few weeks ago in early September. The physical decline was striking to me. He complained of extreme back pain at this point, but was hopeful that once he received his new hips that brighter days would be ahead. Being so far away from someone and not seeing someone daily, you don't really get a good pulse on their true reality. But seeing him in this new physical state, as a nurse, was a slap in the face. The thought crossed my mind more than once that this new clinical picture could be metastasis to bone or muscle. My mom and I discussed it at times and we both agreed that it was more likely, really decaying, aging joints associated with his Arthrogryposis. He grew to be completely bed-bound for the past three weeks and essentially dependent in most care.
This past Wednesday, in late September, he decided that his back pain was too severe and he just couldn't take it anymore. 911 was called and he was taken to Allegheny General. On his preliminary workup, it was suspected that his bladder cancer was back and was no longer superficial. His MRI showed a lesion on the bladder the size of a strawberry with multiple other little spots as well. It has also metastasized throughout his entire lower spine with multiple tumors throughout all of his lumbar vertebrae. These tumors then cause what is called compression fractures, essentially a broken back (which is thru the roof type pain).
So where does he stand now? First off, palliative pain management. He was in excruciating pain upon entering the hospital and everyone wondered how and why he managed to live like that for so very long. It took a bit of adjustment to get his pain in control with IV infusions.. there is still a bit of work to do, but we are moving in the right direction. He still remains completely bed bound with very limited movement, but he is able to move his arms pretty freely at this point without pain, so that is improvement. He went into surgery last night for biopsies and tumor removal and is recovering from that now. Palliative radiation marking will begin hopefully on Monday with at least five days of inpatient radiation treatment to follow next week. He is unable to realistically and safely go home until his pain is more managed. The radiation therapy and IV drug therapy will hopefully allow him to gain enough function that he can return home. We won't get official pathology back until mid-late next week and at that point, we can develop a plan of care with radiation, oncology and the pain management teams. It's not clear as of yet, if his primary cancer is bladder (since he is presently unusually with just having a clean workup four weeks ago) or if there is another site that is spreading to the bones. There is still a lot of unknown and the biopsy results will give us a clearer picture. He may need to have his entire bladder removed with a complete reconstruction of a new one, something that has been on the table as an option for some time now. His brain still needs to be scanned as well, but we are waiting until he is in better pain control before they attempt that. His double hip surgery scheduled for late October has obviously been cancelled.
Overwhelming for sure. We are taking one step at a time, because what other choice do we have really? Fear and doubt creep in for us all at times and comes in waves, but we are remaining steadfast and faithful to the process...as I wrote recently on Facebook, we have our minds protectively somewhere in the clouds, our hearts anchored in hope and our feet firmly planted in reality. We don't know what our path will be for sure, but we do know that we are in this together and we will deal with this as a united family.
You are welcome to visit this site for updates as you wish...we fully embrace all of the love and support from each and every one of you as we begin down a new fork in our road.