Sometimes the hope of
life becomes very simplified to those that are dying.
Be it one more month., weeks , days, hours to minutes.
It is that hope one hangs on to and lives.
As long as breath is in us, we should do what we can.
It’s what life should be. Living it, as it is our last.
Curtis’ Story continued…
Another Surgery
Once in Halifax, urologists attempted to lance what they thought an
abscess on his perineum but it was a no go.
Curtis was taken into surgery later that day. What they had thought an abscess was in fact a 10 centimeter long tumor; no puss, just blood and fluid They continued packing each day, giving him continued intravenous antibiotics but his white cell count continued to fluctuate between 17 – 28. They gave him a drug (dilaudid) to help ease his pain but it still remained. His walking was close to nil and sitting was non existent.
Where they had taken out the tumor, a hole remained , so packing was done twice a day. Changing of dressings and packing was quite painful for Curtis, so 1/2hour before he was to have a dressing change, he was given ativan & dilaudid. Afterwards he spent several hours sleeping.
Pathology In
Within days the pathology was in. It revealed that what they had removed was a tumor or part of one. A cat scan and MRI told that the tumor in his perineum was in fact the same aggressive type of cancer in which they had removed in September. They also found mestates in the left lung, 3 spots were found as well as 6 spots in his right lung. No surgery would be done. the doc said, there was no cure.
Planning for the In-evitable
After receiving the news of Curtis’ cancer spreading, Curtis asked if I could get my brother to get a piece of oak in the woodshed that had broken off during hurricane Juan that he had saved. It was off an oak tree his grandfather had
planted many moons ago.
Curtis wanted him to build a cremation urn for him.
We discussed many decisions for his funeral, it was like getting something out of the way so we could focus on living what time remained.
Once my brother finished the urn, we got my sister to tole paint forget-me-nots (his fav) on the front with his initials.
Then on top I wrote a poem with ideas Curtis gave me and had it engraved on a plaque for the top of the urn…..
“From the bog the little oak did grow
Grampie’s tender care made it so
And through the years & hardships dealt
This oak box remains from the storm that it felt
Even through tragedy
we must look deep and between
And find something beautiful that can be seen
Look for the good, it can be found
Love, Joy & much Hope abounds
Grieve not for me, for I am not here
I am with my daughter; I’ll wait for you there
Have Strength and Courage… Love & forgive
Life is precious, so enjoy and live.”
Delirium
With the high doses of antibiotics, dilaudid and infection, Curtis suffered bouts of terrible delirium. Disoriented, agitated, seeing things, hearing things, paranoia, & jerks/tremors that at times were quite violent. Symptoms seem to go in waves and even with his pain meds decreasing, his pain still remained constant.
One morning when I went in the gentleman in the next bed said he noted Curtis up and looking and acting strange. When I started talking with Curtis he proceeded to tell me how the mexicans came into his room to steal things and were going to kill him. I imagine he heard employees outside his door at the elevators talking and in hearing accents his mind went to places he has never been. I was worried. When I mentioned it to the nurses/doctors, they gave him an MRI on his brain to rule out any cancer that may have spread there; none was found. Still nothing was done and the delirium continued.
So finally I asked the doctor if someone from palliative care could see him for pain management. I thought it strange I would have to ask, to me this should have been something automatic. Immediately palliative care changed his pain medication to morphine and his delirium subsided.
Radiation
A radiation oncologist was called into assess Curtis. He denied being able to give radiation due to his high white count. Luckily another radiologist; Dr Robert Rutledge agreed to give 10 radiation treatments to try and shrink the
tumor and ease his pain. The possibility of having Chemo would be dependent on overall health after having radiation.
So 10 treatments of radiation was given while in hospital. over a 3 week period. Some nausea was experienced as well as temperatures and sleepiness. White count levels remained high.
Occupational Therapy
To help Curtis to be able to sit, occupational therapy was called on to make a special pillow for Curtis to be able to sit. They also practiced taking steps in the stairwell to prepare for going home. They also helped arrange for a hospital bed, walker, commode, home-care and VON to be ready when we arrived home. Curtis wanted to go home and plant a few tomatoes… although scared, I wanted to make it happen.
Home
On May 6th, the day after his last radiation treatment, Curtis went home.
It was a major adjustment with many hurdles but we worked through them together.
With VON, home-care and family we were able to be home a month. Curtis was able to get outside a few times, was able to watch his wood be piled and his
tomatoes grow.
He watched out the window at the hummingbirds and enjoyed what company that came to visit.
Curtis went to Halifax (via ambulance) for his appointment with the chemo oncologist. It was decided that he wouldn’t be having chemo due to his weakened state.
Palliative care was then called in.
Radiation decreased Curtis’ pain and for about one week while home… he had none at all, but then it started to return; the cancer progressed and infection increased.
On June 5th, with infection, constipation, confusion, nausea
and pain, Curtis went by ambulance into Truro Emerg.
In Hospital
Curtis was admitted and put on antibiotics. Once seen by palliative care they were able to correct his constipation immediately with just a needle.
When they saw his tremors they realized he was suffering from delirium and immediately found a private room and put him on Haldol and changed his morphine to a fentanyl patch with liquid fentanyl for immediate pain relief.
For the life of me I can not understand why Halifax allowed his delirium to continue with no treatment when Truro was able to do something. When a person suffers with delirium it’s very real and scary and it should be taken care of.
His sudden violent jerking soon subsided. His hallucinations were few.
I had put up a picture in the room of “Mreow”, Curtis feline buddy. He finally had me take it down because he said she kept winking at him.
He also told he how I missed seeing a co worker come in and in detail explain their conversation… yet in the next breath told me ” Mamma I don’t think it really happened”, of which it didn’t. At least there were no mexicans this time.
His hemoglobin was low so he had a blood transfusion. His health & strength failed and to walk was difficult. He then developed a yeast infection due to the high doses of vancomycin. Tests were done to find out where the infection was, but none could be found on an ultrasound.
Benefit
A Benefit had been planned for June 18th, and Curtis’ had planned on attending, but since in hospital he couldn’t, so a laptop with skype was set up.
That day Curtis still was having delirium and high white counts; he was very sick and we were very worried of such a change in him. They decided to give him midazolam. We wondered if he would even be alert for the Benefit.
As the laptop was turned on, he became alert for close to 2 hours. It was like a miracle. Even the next day he was in good spirits and well rested. Finally the right cocktail was found, but not to last long.
His white counts seemingly came down some only to bounce back up to the high 30’s.
Nothing was keeping his counts down, the cancer raged on.
Finally the first of July, with problems finding and keeping an open vein as well as the antibiotics not helping, Curtis decided no more intravenous.
Continued on page 5
