No Nothing….
UPDATE:
July is over. Thank goodness!! We spent only 6 days at home all month, and they were NOT good days. Last Tuesday, John got another fever and was really weak, not eating much or drinking much, and still had issues with pain.
Mayo Clinic said that I should try to bring him to the ER in Rochester, so we packed up for another potential hospital stay in about 20 minutes with all of the necessities. Meanwhile, the littles were responsible for packing themselves. I later learned that Kady packed her DVD player and high heels, but no underwear or socks and Alena packed for a week instead of 3 days because as she told me later, “Daddy always ends up staying in the hospital longer anyway.” Lovely! Thanks to the angels who took care of them for longer than anyone had expected, it all worked out.
When we got to the ER, his vital signs were all NORMAL!! This was a FIRST! We were so excited, until….. the chest x-ray showed potential pneumonia and the ER team wanted to keep him for observation overnight, which meant that we would miss our first Mayo Clinic appointment and continue to have
No Doctor
No Treatment Plan
No Pain Management Plan
and
No Surgical Plan
When Alicia and I returned from checking into the hotel, John was having a hard time breathing, his heart was racing, and his blood pressure was at numbers so high that I didn’t even know they were humanly possible. He was having another heart episode (the staff have used this term, but technically they are considered to be an NSTEMI, baby heart attack). He was transferred to the ICU and spent three days there getting antibiotics and having a heart catheterization. They began treating him with medications to help with the blockages that were found. With these new blockages, and a weakened heart, we had no idea if he could have any type of chemotherapy, radiation, or surgery. And the only way we would find out was by making a new appointment to the Mayo Clinic some time in the future, after discharge. That hadn’t worked out too well so far. To say we felt lost would be a extreme understatement. I kept referring to it as “living in limbo.”
At this same time, the discharge plan was to find a rehabilitation skilled nursing facility near Rochester for John to stay in until he would be strong enough to go home successfully. He would also be able to make any scheduled Mayo Clinic appointments while there. Even though our insurance didn’t have an “in network” facility in the Rochester area, there was the possibility of negotiating for one due to his medical need. I would need the help of a hospital social worker, and it was 1:00pm on a Friday afternoon. I had been asking to talk to somebody since Wednesday.
When a room became available for him to be transferred to from the ICU, Alicia and I took his cart of stuff to the new location. I’ve become a seasoned veteran on changing rooms quickly! He has changed rooms 10 times. And I always return the moving cart back to the floor where it came from. Nurses like that stuff! Anyway, when we got to his room and saw how small it was and that he would have to be sharing with a sweet older man, I basically lost it. I asked the nurse why an immunocompromised cancer patient would be discharged to a shared room? She looked at me as though I were creating voodoo spells on her and answered, “I don’t know.” Next, I insisted on seeing a social worker, something I had been requesting for two days. To that request she replied, “I’m sorry but I don’t know where she is.”
“Then have her paged,” I insisted, “I was told that I would see someone two days ago and I need to talk to someone in 15 minutes.” Less than fifteen minutes later, a social worker was standing in front of me with a fearful look in her eye. She had obviously been informed about me. At the same time, the nurses got a phone call that John wouldn’t be moved to that room after all. I sent Alicia to stay with John while I talked to the social worker. After talking to the social worker I immediately called the ICU nurses station and asked them the same question I had asked the new floor nurse, “Why is an immunocompromised cancer patient being moved into a shared room.” I was told that his white blood cell count was too high to be considered “immunocompromised.” “Funny,” I scoffed, “it was also too high when he got pneumonia three days ago and everyone said that he got it THEN because he was… IMMUNOCOMPROMISED!”
They must have made some phone calls and coded things differently because all plans to move to a new room were stopped and every nurse who came into his ICU room greeted us with, “looks like your wife didn’t like the other room so they are finding you a different one.” Yep. I’m that kind of wife… and a good thing, too!
Because John’s pain was completely out of control (that is an entirely separate, painful story), I also continued to ask for the palliative care team. They came in late that night and finally gave us a better pain management plan. Finally. One. Plan.
The next day, they moved John back to the oncology unit at the other hospital, Methodist. After getting settled in, we were told that the nurse practitioner working on the floor was a sarcoma expert who had worked with the main sarcoma doctor at Mayo for decades. Apparently, the nurse practitioner called him (in the evening on a weekend), he called the radiology oncologist, and we would be getting a consult in the morning, because they had already decided that John would be receiving radiation treatments while in the hospital. They also said that even though we had missed the Mayo Clinic appointments, those connections had been made for us and that we were “in the system.” I literally burst into tears. Tears of relief. We finally had:
A pain management plan
A treatment plan
A doctor
A scheduled surgical consult appointment
and a very important little thing called….. hope.
On Sunday, Alicia and I drove back home, did some laundry, picked up the littles, packed the camper, we were given some groceries by another angel, and then we took the camper and the car back to Rochester with the plan of making some of the campgrounds around the hospital into our new home for the next few weeks. It was a brutally long day, but it had to be done before the big meetings on Monday where we would learn more about treatment plans.
One more room change, some really good pain management, some real rest, and a little bit of interest in eating and drinking brings us to today. The first day of radiation. Nine more to go. In the hospital.
After that? We don’t know.
We do know that we are nervous about going home too early, and we don’t want John to bounce back into the hospital. We also know that we are finally getting some treatment for the cancer after a month of waiting and a month of anxiety, questions, and the feeling that we were clawing our way out of a very dark, slippery abyss.
Now we do have no nothing…. we have a little bit of something. And that helps.
