Sunday, August 25, 2019

Sunday Stroke Survival: The Energizer Bunny

At times, I feel like the Energizer Bunny. But the battery is running low so instead of  him beating his drum in a rapid cadence, it's more like skipping every other beat. Kind of like my heart is doing right now. No, that's not good news either.

But I'm stronger than last week. I managed to go with Mel to the dump. More for moral support than actually helping because I'm still under a 10 lb weight lifting restraint. I actually managed to feed the rabbits and chickens three times this week. I leave the watering to Mel, it's too much repetitive bending for me to do comfortably yet, but I'm doing more while am healing up. I've even managed cooking our main meal (3 PM- 5PM) five times this week. So that's an improvement, but it's not happening fast enough.

While I know I'll get there in time, I have this ticking time bomb booming in my head with every passing day while I recover and get semi normal again. The time bomb is the cancer in my thyroid area. Everyday that passes is another day that it might spread to my lungs, brain, or lymphatic system. I'm already living post six strokes, a failed baclofen pump placement and removal, and a failing heart. Did I really need cancer too? Talk about a quadruple whammy!

So as you can tell, my patience is running a bit thin right now with it taking so long to recover enough for this next surgery. The radiation therapy has a basically, for this type of cancer, carries with it a 28-day half life of isolation protocol. I have to spend the first two weeks in a lead lined room in the hospital. After that I'm discharged home, I have to maintain a 3-foot distance from every living thing (plant and animal). My bedding and clothing need to be washed twice, any eating and cooking stuff will be contaminated and must be washed in the dishwasher or use disposables. Meals will have to be cooked by Mel. Been here, done that, and didn't want to do it again.

That brings up another point. Disposables must be bagged separately in bio-hazard bags and held for 90 days before it's safe enough to be disposed of. Even though the hospitals can dispose these, it can only happen after the 45-day mark. Imagine how many diapers, and paper goods will be generated in that time frame.

Now if the cancer has spread, that a whole 'nother can of worms. More radiation (not the isolation type) and chemo to look forward to. Sure I can afford at least a 50-lb weight drop, but I can think of a dozen less drastic ways to do  this. Losing my hair is the least of my worries. I'll be fighting for my life. When I've gone through this before I wore peasant skirts and blouses, big earrings, and silk scarves. These were my gypsy months. But as a sexagenarian, I don't think I'll bother with that this time. Before, I stayed in the work force and was in the public eye more.

Around here, the rabbits, chickens, cats, dogs, and garden don't care what I look like so long as they are tended to. Well I take that back, Buddy Baby (rabbit) and Lil Bit (cat) do like to lick my eyelids and brows, and groom my hair as a signs of affection. But that's it. Mel will just have to get used to it. With the weather cooling down, I can always knit myself a couple of chemo caps while they pump that poison into my veins, right?

Did I mention my patience is wearing thin? My thoughts turn positively morbid when I get like this. Can't you tell? My positive, uplifting, and optimistic side  slides into oblivion the more my patience gets thinner. I can still pray so I'm not totally without hope. This is the most important thing to me. Now, God is giving me enough patience to get me through today and that's my blessing. He keeps reminding me that He is control no matter what happens. He's got my back, front, and both sides.

Nothing is impossible.

Sunday, August 18, 2019

Sunday Stroke Survival: Recovering in Slow Motion

Recovering from a seizure, near death, a massive infection, and a baclofen pump removal surgery is no picnic. It's recovery in slow motion. Add advancing age and living post stroke into the mix makes recovery even slower.

I am now  2 1/2 weeks out of the hospital. To date, I've cooked 2 meals with assistance, been out of the house once for a shopping trip (I didn't go in, just sat in the car), I've taken two full showers, and walk one row of the garden (26'). Mind you, not in the same day or even every other day. I haven't had the strength. Even climbing four stairs is exhausting. We've had a couple of chicks born to a broody hen that I haven't been out to see. After each event, I've had to take a nap and takes a day to recover from the activity!

I'm feeling every one of my years. I no longer need a helping hand to rise from a chair although it still takes a couple of attempts.My functioning side is weakened from so long in the hospital. I wasn't allowed to get up from the bed at all until I was discharged.

So what am I doing about it?
  • I've enlisted the help of my home health care PT services for strengthening. Not that I don't know the routine by now, but the refresher is good.
  • I make a point of rising from my desk every hour and walking the 40 steps to the bathroom. I usually don't make it so I've back tracked into pull up again. But, this is a strengthening exercise. I'll retrain my bladder later.
  • I make a point to do one little thing extra each day. It could be making myself breakfast, snacks, lunch, or dinner. Like tonight, I'm making Goulash from scratch and biscuits. That's something new so far. I may have to cook the ground beef and sit down, chop the onions with my slap chopper and sit down, drain the beef and add the onions, and sit down, and add the spices, tomatoes, macaroni and sit down while it cooks. Finally make my baking powder biscuits. I'll sit down again while they bake. I'll serve it up. Mel will carry it out to the back porch because I need my functioning hand to maneuver the steps. I'll be sweating and exhausted by then, like I've worked all day in the garden and tended the animals.
  • I'm still taking a daily two-hour naps to get through the day. Between the baclofen, dantrolene, and seizure meds I stay sleepy. I haven't dared to take my valium to ease the increasing pain from the spasticity.
  • I keep a 1lb hand and ankle weight on my functioning side by my computer and do 10 reps every two to three hours. While this succeeds in tiring me out further, it would be time spent watching a movie or show on Netflix anyhow.
Still I'm in slow motion. The stitches came out this week. They were starting to get itchy and getting caught in my abdominal binder. The incisions still catch me and let me know I can't move that way yet. So I know I'm healing. I've now finished all my antibiotics. If any germs lived through a month of four heavy duty antibiotics deserves to live. You'd think that I recover faster doing all of this, but I'm not. I'll keep at it. Maybe one day, I'll awaken full of energy and giddy up and go but I'm not holding my breath.

Nothing is impossible.

Sunday, August 11, 2019

Sunday Stroke Survival: Trouble with Tribbles Continued

Du,ring my down (nonwriting) time and before my unexpectedly long hospitalization, I had some life decisions to make. The accident shook me up and hurt me worse than I wrote about here. I had a concussion, an avulsed left eye, banged up both sides of my body, my implant slipped from its pocket, and was really doubting my ability to continue to live independently.

It was this last doubt that made me stop writing the posts. I needed to do some serious soul searching. I started doubting and second guessing every decision I'd made since my stroke in 2012 and the death of my husband in 2015. Yes, I was that badly shaken up. Who was I now? What was I honestly capable of now? How much of what I believed I could do was hype and how much was reality? I was reevaluating goals and trying to find some order that was realistic. This was a mighty tall order and I was taking an honest hard look at my life and the rest of my life. With all that's come down the pipe is it any wonder I wanted it to be 2012 again, but it never would be again?

I wasn't without options. I could give up this lifestyle choice and move into a senior's living place or assisted living place back home. I have so few possessions that it would be feasible. I'd even have to buy a few things like dinnerware, a dining table and a bed. My needs are really simple at this point. It would just mean moving back home near family, friends, and my church. But it would mean giving up some of my independence. I decided to stay put for the time being. The other options were still open.

After my ordeal, the simple acts of feeding myself, going to the bathroom, and getting dressed are about all I can manage these days. Once again, I'm considering my other options, but my stubbornness continues to make me stay put for as long as I can. Although distant, my stamina will increase again. Oh what a joy to get older. Everything takes longer. A long list of honey-dos awaits and growing while I do this. They'll get done eventually.

Nothing is impossible.

Sunday, August 4, 2019

Sunday Stroke Survival: Trouble with Tribbles

Original Star Trek series circa 1967
I got tired of using the Murphy's Law line. So instead, I chose the title of one of my favorite Star Trek episodes. The gist is the same. One little thing snowballs into some major things including death or at at least circumnavigating death once again for me.

Even the old Neitzche's line of that which doesn't kill us makes us stronger is old and trite to me after my past couple weeks. The fact is, I'm tired. Not that I have a death wish, but more exactly exhausted of living. I'll explain.

It all started innocently enough. I had an ultrasound of my "thyroid" scheduled for the week of  the 23rd. An incidental finding of the CT of my neck after my car accident at the end of May showed an enlarged thyroid gland. The only problem with this was my thyroid and parathyroid glands were removed in 1993 due to cancer. To say I was concerned by the new finding was disturbing was an understatement.  But yet, I had beaten this cancer before and knew I could again even though my mother hadn't. A plan was in place to ultrasound the area and consult a surgeon to remove the growth. My GP's feeling if it wasn't in there naturally, it should be removed with my history. I wholeheartedly agreed.

I had an appointment with my cardiologist because my unusual Electrocardiogram reading and changes in my EKG. It seems the I have low blood pressures throughout my body but have high blood pressure within my heart damaging my already damaged heart valves. My three of four valves are fast approaching replacement which I have refused and we were searching for additional options.

Both of these fall within living my life to the fullest without major interventions. So I faced them with no major upset and rolling with the punches. That's why this is my saga versus a blog. Stuff happens and keeps happening in my life that would overwhelm most people. I've learned over the decades to not sweat the small stuff and almost everything is small stuff. Living post stroke, living with a bad heart, or living with/post cancer is even small stuff in the whole picture of living. They are bumps or detours in the roadway of life. You get through them and go on living the best you can. That's all anybody can do, right?

So what tilted my apple cart? Yes, everyone has a limit, even me. I awoke on Friday the 20th and noticed my nightshirt was wet over my pump. I thought maybe my nightshirt had bunched up at my waist and sweat had accumulated there. I changed into t-shirt and shorts, and thought nothing more about it. I fed the dogs and me, and went about my normal daily activities. After about an hour, my affected arm brushed against my shirt. I noticed a 8" fluid stain on my t-shirt. Oh, great, I thought, I'm leaking baclofen from my pump. I could overdose if it were not correct. This made it an emergency situation. I put in a call to my baclofen doctor at Emory.

The rapid return call was not what I expected. There was no way I was leaking baclofen. There was a strong possibility I was leaking spinal fluid! This was an emergency. Arrangements were made for my direct admit to Emory. Even though I was on blood thinners, they'd have to go in and remove the catheter pulled from my spine immediately.

Upon my arrival, 2 1/2 hrs later with Atlanta traffic, I was whisked upstairs. Dr Au Yong was in surgery so in rushed two of his neurosurgeon residents. Upon excreting some of the liquid, taking swabs for the lab, I was put in a gown and put into bed. The good news was that it wasn't spinal fluid. It was pus from a massive infection. I had an abdomen full surrounding my pump. The emergency was only now mildly abated. The infection could spread to the  spinal fluid. I'd need a lumbar puncture to be sure it hadn't. One was performed and it was clear of infection. We had side stepped a bullet.

Saturday morning, my neurosurgeon came in. We discussed my options. The pump and catheter needed to be removed as the cause of my infection. Mind you, I had no symptoms of an pain nor fever, but a highly elevated white count was the only indicator. We had time to let my blood thinner work it's way out of my body while hitting this infection with heavy duty IV antibiotics for the best results. I would remain in hospital until after the procedure. The fact that I'd miss my ultrasound and cardiac appointments were a foregone conclusion. I'd planned too be bored out of my gourd for the 3-6 days for the blood thinners not to pose a danger to surgery.

It didn't turn out that way. I had a grand mal seizure. A subsequent CT showed a slow bleeding hematoma in my brain. I remember being asked repeatedly if I'd fallen on or hit my head over the past several weeks, but the only main possible event was my car accident at the end of May. Nothing else that could have caused my major concussion. A bur hole was ordered to drill out to evacuate the clot and reduce my brain swelling, but I suddenly altered consciousness before it could be performed. I had to be resuscitated because my heart stopped.

The pocket of infection ruptured. I have a hard time distinguishing fact from hallucination for the next week in the ICU. The year, my birthday and name orientation questions was hit and miss. At some point, they removed my pump and spinal catheter. This included an intensive abdominal flush of all the purulent matter in my body. I know because they told me. I was one sick puppy.

I had told my neurosurgeon about the possible return of the thyroid cancer so an ultrasound was performed. it showed cancer It fills the space where a normal or slightly enlarged thyroid would be. Nothing can be done until I finish an additional two weeks of IV and oral antibiotics is finished. I was discharged home on Thursday. Mel dutifully drove to Atlanta, picked me up, and drove me home in rush hour traffic.

Without the baclofen pump, the arm spasticity has returned. My arm is now once again curled into my chest and cramping painfully. I am on antiseizure meds until the hematoma finishes absorbing (another 3 weeks). They are making me extremely drowsy. My get up and go has got up and went. I can't seem to get my stamina back. Just the effort of walking to the bathroom and sitting at the computer is tiring after two weeks in the hospital. I've taken daily naps. I was told that they could replace the pump after I finish the antibiotics, but I'm hesitant. Dr Au Yong had sneaked into the neuro unit before my discharge. He's on paternity leave. He told me if I needed him in the next six weeks, he'd be there.

So all my apples spilled out of my cart. To date, I haven't had the energy to pick them up. So my my Murphy's Law, Neitzche lines have worn thin as I try to recuperate. I still have my throat surgery and radiation to look forward, fun. So now, it's trouble with tribbles as I continue to breathe another day above ground.