My transfer to Spaulding Rehab Clinic was officially scheduled for Sunday despite being medically "approved" for discharge last Friday, having to wait the requisite three extra days in the hospital while the healthcare practitioners and insurance companies figure out the details of my transfer. The inefficiencies with our healthcare system are laughable. Nevertheless I have very little to complain about in my private 22nd floor suite overlooking the Boston's skyline and the Charles River.
Stuck at MGH for yet another weekend we were able to make the best out of our final days at MGH. Being that this was my second round of hospitalization for a procedure followed by rehabilitation (round 1 was for radiation 2 weeks prior), I was able to best take advantage of all the services MGH had to offer. We requested PT and OT everyday and spent the rest of our time practicing my new exercises. We also spent a lot of time ensuring that the transition to Spaudling would be less hectic (i.e. does not include a trip to the nursery home).
Now fully understanding how easily muscles can de-condition, we took the therapy very seriously and religiously repeated our exercises throughout each day. Also, in talking to the therapists at MGH we learned that it's imperative to be placed on the correct floor / service within Spaulding; each floor is dedicated to the rehabilitation of different treatment categories: traumatic brain injuries, stroke, muscular-skeletal problems, and spinal cord injuries. Last time I was assigned to a general rehab floor mostly covering traumatic brain injury, stroke and cerebral palsey. For my next stint at Spaulding we requested to be serviced by the spinal cord injury service.
p.s. Over the weekend I pooped four times (2 each day), all natural! How you like that poo shot!
Sunday, February 27, 2011
Thursday, February 24, 2011
On the Road to Recovery...
I finally feel like I'm back on the road to recovery, instead of the downward spiral of these past weeks. "Tomorrow is always a better day," I'd say to myself before falling asleep. However, there were several times where this wasn't true. There were days that brought a little less movement / sensation in my legs and a little more pain in my back; there were some dark weeks.
Now, post surgery, I'm pretty good. The crippling lower back pain has subsided and the leg cramping may have gotten a little better (this last sentence I type while glaring at my leg where I can feel a dull throbbing sensation). I'm slowly gaining more and more strength in my legs and decreasing the amount of narcotics to keep me sane. So these are all great things to celebrate; however, ever since the surgery a numbness has slowly creeped up my legs and now I'm basically numb below my waistline, which is a little unsettling.
Even though we relieved the spinal cord compression at T11/T12, there are still lesions all along my lumbar and sacral spine contributing to these leg symptoms. There's really nothing we can surgically do in the lower parts of the spine so what we're hoping is that we can get these tumors under control using more chemo or radiation. We're planning on starting another round of chemotherapy in 2 weeks (3 weeks post-op), cocktail TBD depending on blood chemistries but something new and different which should be exciting.
My biggest complaint now is this numbness that has made walking difficult. Even though I'm getting more strength in my legs, I cannot feel where they are placed or how they are oriented. I've been working with physical therapy and occupational therapy over the past couple days and have made some great strides, teaching my other senses to compensate for my lack of sensation. Everyday gets a little easier but there's a long hill ahead.
I need to go back to the rehab facility for at least week to build up my strength and get closer to my baseline before this most recent debacle (pre-radiation). I need assistance when I use the walker and stairs have barely been touched. For safety reasons, blue cross blue shield permitting, rehab is imperative. If all goes well I'll be transferred to Spaulding tomorrow.
Progress feels good and spirits are high. I thank everyone who has recently reached out and, of course, all the visitors who keep us afloat. The support we've received is really amazing and very much appreciated.
Now, post surgery, I'm pretty good. The crippling lower back pain has subsided and the leg cramping may have gotten a little better (this last sentence I type while glaring at my leg where I can feel a dull throbbing sensation). I'm slowly gaining more and more strength in my legs and decreasing the amount of narcotics to keep me sane. So these are all great things to celebrate; however, ever since the surgery a numbness has slowly creeped up my legs and now I'm basically numb below my waistline, which is a little unsettling.
Even though we relieved the spinal cord compression at T11/T12, there are still lesions all along my lumbar and sacral spine contributing to these leg symptoms. There's really nothing we can surgically do in the lower parts of the spine so what we're hoping is that we can get these tumors under control using more chemo or radiation. We're planning on starting another round of chemotherapy in 2 weeks (3 weeks post-op), cocktail TBD depending on blood chemistries but something new and different which should be exciting.
My biggest complaint now is this numbness that has made walking difficult. Even though I'm getting more strength in my legs, I cannot feel where they are placed or how they are oriented. I've been working with physical therapy and occupational therapy over the past couple days and have made some great strides, teaching my other senses to compensate for my lack of sensation. Everyday gets a little easier but there's a long hill ahead.
I need to go back to the rehab facility for at least week to build up my strength and get closer to my baseline before this most recent debacle (pre-radiation). I need assistance when I use the walker and stairs have barely been touched. For safety reasons, blue cross blue shield permitting, rehab is imperative. If all goes well I'll be transferred to Spaulding tomorrow.
Progress feels good and spirits are high. I thank everyone who has recently reached out and, of course, all the visitors who keep us afloat. The support we've received is really amazing and very much appreciated.
Monday, February 21, 2011
Restarting the Plumbing
Today was a pretty stressful day. Today we restarted the plumbing.
The morning stated at 6 am with the removal of my incision drains which just felt "weird." It felt like what I would imagine pulling out two fatty bait worms planted deeply along your spine. It was weird; it made the hair on my body stand up on ends; and it gave me the willies.
The next item on the list was to get rid of the foley catheter, the one hanging from my penis, which drains the urine out of my bladder. My doctor promised me a hot nurse to do the dirty work but instead sent a murse (male nurse). I was told to take a deep breath as the dangling end of the catheter was yanked out. Not as painful as it sounds but equally as weird of a feeling, though this time I spit the bait worm out of my penis (and across the room).
With the tubes removed I was gently told that I should start peeing again in the next 8 hours, and the rest of the day was spent hanging out with friends, playing dominos, and enjoying my new tubeless freedoms.
What I was not told was that if I don't evacuate within the next eight hours then I'll get a bladder scan to measure the urine in my stomach and I'd likely need to get another foley put in. After six hours they rolled in the bladder scanner and filled me in on the details of the next two hours.
Holy crap.... Drink water!!! That's all I could think about as I quickly downed 1.5 liters of water.
I have never had a problem peeing but this was a lot to handle. I had to pee, bed-side in a urinal so it could be measured, in the next two hours or else suffer the consequences. The bladder scanner stared me down from across the room as the nurse aimed a fresh catheter at my penis. On top of this my stomach was super bloated, growling at me about the next poo shot, and I now had almost two liters of liquids pressing through my body, surely enough to guarantee another foley.
Every time I felt like going was a false alarm and when it wasn't a false alarm I thought I'd crap my pants and had to self-abort. Thirty minutes passed, then came an hour and with forty-five minutes to spare I decided it going to be an all or nothing affair; so I called in the troops, yes the poo-shot came to my rescue. Loyal and trusting poo-shot.
We first changed venues, moving to the bathroom, which alone did the trick to fill up the urinal, but I still accepted the shot for bragging rights. I've never met a community of people so concerned about my peeing and pooping.
Relaxed, drained and completely spent, I closed the door on a successful day.
The morning stated at 6 am with the removal of my incision drains which just felt "weird." It felt like what I would imagine pulling out two fatty bait worms planted deeply along your spine. It was weird; it made the hair on my body stand up on ends; and it gave me the willies.
The next item on the list was to get rid of the foley catheter, the one hanging from my penis, which drains the urine out of my bladder. My doctor promised me a hot nurse to do the dirty work but instead sent a murse (male nurse). I was told to take a deep breath as the dangling end of the catheter was yanked out. Not as painful as it sounds but equally as weird of a feeling, though this time I spit the bait worm out of my penis (and across the room).
With the tubes removed I was gently told that I should start peeing again in the next 8 hours, and the rest of the day was spent hanging out with friends, playing dominos, and enjoying my new tubeless freedoms.
What I was not told was that if I don't evacuate within the next eight hours then I'll get a bladder scan to measure the urine in my stomach and I'd likely need to get another foley put in. After six hours they rolled in the bladder scanner and filled me in on the details of the next two hours.
Holy crap.... Drink water!!! That's all I could think about as I quickly downed 1.5 liters of water.
I have never had a problem peeing but this was a lot to handle. I had to pee, bed-side in a urinal so it could be measured, in the next two hours or else suffer the consequences. The bladder scanner stared me down from across the room as the nurse aimed a fresh catheter at my penis. On top of this my stomach was super bloated, growling at me about the next poo shot, and I now had almost two liters of liquids pressing through my body, surely enough to guarantee another foley.
Every time I felt like going was a false alarm and when it wasn't a false alarm I thought I'd crap my pants and had to self-abort. Thirty minutes passed, then came an hour and with forty-five minutes to spare I decided it going to be an all or nothing affair; so I called in the troops, yes the poo-shot came to my rescue. Loyal and trusting poo-shot.
We first changed venues, moving to the bathroom, which alone did the trick to fill up the urinal, but I still accepted the shot for bragging rights. I've never met a community of people so concerned about my peeing and pooping.
Relaxed, drained and completely spent, I closed the door on a successful day.
Saturday, February 19, 2011
Update Letter from Dad
To those that did not know, Jeffrey had decompressive surgery of his thoracic spine at T11 T12 this morning and got to ICU at about 100pm. Surgery went fine as the spine surgeon was able to remove all the epidural mass that was compressing the cord. His electrical potentials were weak going into surgery and no change during surgery which is good Paradoxically he had his best day of PT having walked more and navigating stairs on Friday. The new thoracic MRI Friday looked worse so it was decided to go ahead with the decompression alone since "the paraplegia grim reaper" was standing at his bedside. Frank Pedlow (good guy) a former fellow of Boden and Heller did the surgery. My job besides worrying like hell was to drive the specimens to the Dana Farber Institute where some immunologically compromised mice will be implanted with pieces of the tumor through an open incision by Ewa, a nice polish researcher today. It will take months to grow the tumors and keep transferring to more and more mice. Then they will be treated with different drugs to see which ones kill the tumor. I pray that Jeffrey has the time to see this part to fruition.
PS he is resting comfortably in the ICU on propofol (the Michael Jackson drug) except Jeff is still intubated. I had to call Monty to verify that this is proper ICU treatment before making an A hole out of myself to the iCU nurse. He will be extubated over the next few hours.
PPS It took so long to write this with all the interruptions that Jeffrey woke up is moving his feet and will be extubated in a little bit. Hooray!
Richard D Guyer, MD
Friday, February 18, 2011
Admitted to MGH, Part Deux
I know it's been awhile since my last update but truthfully there has been little fun stuff to report other than the poo-shot which never ceases to amaze me (I just got it earlier this evening... Amazing).
This past week which was supposed to be spent on rehab strengthening my legs was instead spent on pain management. I've been struggling with three pains: lower back pain, numbness of my legs and this terrible muscle ache that travels between the bottom of my right foot and my right calf. All very weird and annoying and over the last two weeks at the hospital my legs got VERY weak and generally I've been wheel chair bound. In addition, I had four doctor's appointments and 3 MRI scans which required either ambulance transfer or wheel chair van from the rehab center to the appointment, I got beat up on Wednesday, and all while going through physical therapy and occupational therapy to get stronger.
So it has been a tough and painful week, though today was a great day. Although I did resume some steroid medication last night which always makes you feel great. I had a great PT session where I walked a longer distance than I have my entire stay at Spaulding, I climbed four stairs and rode this cool recumbent elliptical machine. I also spoke to my palliative care team and we tweaked the pain medicines which I can already feel the benefits. The entire morning was relatively pain free with very little back pain and some great rehab progress.
In the afternoon was my third MRI which really should have occurred on Tuesday but was accidentally left out, so need-less-to-say it began as an annoyance. After one hour of lying on the MRI table, the back pain which had been so nice to me all day decided to return. The transfers took forever. And when I finally got back to the rehab center I had an urgent message from my oncologist regarding the scans, fresh off the press. However, there was a silver lining to the afternoon's activities, and I got to jam out to Tom Petty and Led Zeppelin during the scan (only the really new machines have head phones so this is pretty rare).
And then the returned phone call... Despite attempts to reduce the spine lesions using radiation, the scans showed some progression at T11/T12 that will inevitably require surgical intervention and is likely the source to much of the leg pain and weakness. So I'm typing this posting from my new bed, tranferred from Spaulding back to MGH, plugged back into my power port, awaiting surgery tentatively planned in the morning and falling asleep, zzzzzzzzzzz...
Friday, February 11, 2011
The Poo Shot!
Recently I've been introduced to a new drug we've been calling the "Poo Shot!" It's called methylnaltrexone and it counters the effects of opiod induced constipation, almost instantaneously. Seriously, I receive a shot in my arm and within 12 minutes I'm running to the bathroom. Genius!Among other nonsensical trials and tribulations I was temporarily (and mistakenly) transferred to a nursing home instead of to a rehab facility, I rode in two different ambulances in the same day and still only managed to lose a week or so in my healing progress.
That being said, we are in a MUCH better place now and finally getting the help that I need! I'm staying at the Spaulding Rehabilitation Center Boston and should be here for a week or so. Today after all the initial PT/OT evaluations I had some very successful physical therapy sessions which are already showing their effect.
Thanks for all the well wishes and good thoughts.
Tuesday, February 8, 2011
The Hoyer Lift
Sitting on the edge of the bed getting dressed, I lost my footing and got to ride the Hoyer Lift! I definitely have to get one of these installed at home!
Saturday, February 5, 2011
Friday, February 4, 2011
The internal vs. External
Over the past couple of weeks, ever since i got back from Dallas, I've been struggling with this discord between how how darn gorgeous I look on the outside compared to the internal daily, life and death situations occurring on the battle fields of my body and organs. I've always masked the numbers from my blog, knowing they are just numbers but recently I have been wanting to educate my friends and family on the gravity and reality of this disease. There is no cure and death is a constant topic I think about each day, even while trying to take advantage of each moment. I wish and pray that I had diabetes or breast cancer or leukemia, one of these diseases that scare you, make you feel mortal but inevitably are manageable.
I never imagined the intense physical pain and discomfort that would come along with my own disease. Sitting bedside to use a urinal requires high dose painkillers and taking a shower remains one of then most painful activities of the week.
I take each day one at a time and when I reference closure or an end, that's exactly what I want: an end to the pain, comfort to the turmoil of this disease and some peace to the end of the day for well needed rest. Sometimes I think paralysis would bring some solace; at least I wouldn't be able to feel the pain. Other times i think this slow struggle is from my grandparents, whom loved me so much, and yearn again for our upcoming reunion.
I never imagined the intense physical pain and discomfort that would come along with my own disease. Sitting bedside to use a urinal requires high dose painkillers and taking a shower remains one of then most painful activities of the week.
I take each day one at a time and when I reference closure or an end, that's exactly what I want: an end to the pain, comfort to the turmoil of this disease and some peace to the end of the day for well needed rest. Sometimes I think paralysis would bring some solace; at least I wouldn't be able to feel the pain. Other times i think this slow struggle is from my grandparents, whom loved me so much, and yearn again for our upcoming reunion.
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