Posts Tagged ‘bone pain’

Round 2!

May 6, 2014

My mother stayed with us again during the second week and by now I was slowly beginning to come out of the ether a little bit, as it were. After the initial onslaught of the first round of Chemo and having survived that requisite attack of bone pain from the Neupogen, I was beginning to feel a little more like myself. The swelling in my legs and feet and “there” were beginning to go down. I was tolerating some food a little better, but I still couldn’t manage anything on the dry side. I still took my naps on the couch, I still wasn’t brave enough to try to manage the stairs to my own comfortable bed. And, of course, I continued to work as diligently as possible.
Then another change occurred and the way it started was at once surprising and disheartening. I had been forewarned that my hair would fall out and I was, and then again, I wasn’t ready for it, but I was assured it would grow back. I keep my hair short anyway, so it’s not like it would be a shock if it came out in clumps. I know it was between the first and second chemo’s and I know it wasn’t the previous weekend, the Battle of the Doctors’ weekend, the “you should have thought of this on Friday” weekend, but I don’t really recall if was the very next weekend or the one after that, but one morning I woke up around 6 to pee and when I was finished, I had a handful of hair. Yes, that’s where it started falling out from first. I was devastated and maybe somewhat humiliated. That had come as a complete surprise. I wasn’t about to watch the rest of it fall out so I took a brand new blade took care of it right from the get go all in one fell swoop.
The next day, though, I remember it well, after my shower, my hands and towel were covered with hair from my head. Again, it was devastating, even though I knew it could happen, I just wasn’t ready for it. And of course tears welled in my eyes. It was one more indication that I was sick. Ariel suggested shaving it, but for some reason, maybe vanity, who knows?, I just wasn’t ready for that step but I agreed to shave it down with the #1 attachment. It was the closest I was willing to go to having a bald scalp. If I was going to be a cue ball, it would have to happen on its own. As if the other signs up to now weren’t enough, it hit me that morning in the shower, with my hair in places it shouldn’t be that I had cancer. Cancer! One day I was a guy with a horrible pain in my back and the next I was the same guy with cancer.
Fast forward the calendar and know that my days were spent as they’d been of late and my second Chemo session was coming up on Thursday, the 5 th of September, the first time in the Chemo Chamber at Dr. David’s office. That room was filled with angels, too many to make up names for, all dressed as nurses, each a caring and concerned woman, ready to sit and listen, to talk, to joke with and to make sure all of us back there receiving treatment were as comfortable and relaxed as possible. I love them all. I hope they know that.
There were two very special nurses there, Nurse Bea and Nurse Kay, who were mainly in charge of administering of the treatments and both, well, one perhaps a skosh more (for being a Wizard of Oz fan) than the other, are forever in our grateful hearts. I had mentioned to one of them that I knew Sue for years and she was flabbergasted. Of course Dr. David had known that from when I was still in the hospital because we asked his advice on whether we should tell her I had cancer. Turns out, she kind of suspected because the day I had gone for my CT scan (still not knowing it was cancer) at the radiology department on the first floor of where Dr’s Thomas and David are, we ran into Sue’s brother who had just finished getting her into the car to go home after her chemotherapy. We stopped to talk to her and not wanting to upset her, told her I finally was doing something about my back. She, too, had been witness to my crawling on the floor in pain and crying and drooling. She later told me she prayed secretly to “please don’t let it be cancer”. She said I had looked ashen.
I will say here, since I’ve brought Sue up again in the story, as I have said time and again she was my inspiration to get through this. I had a finite prognosis of when my cure would come about and she’d been through more rough times during her 15 year battle than a person should have to endure and if she could keep her spirits up for that amount of time, I could as well. She and I kind of looked forward to Thursdays at Dr. David’s because we’d be Chemo buddies, but that wasn’t to be. She had taken a bad turn and was admitted to a rehab facility and wouldn’t be resuming chemotherapy.
Here’s a foot-in-mouth anecdote, one of those moments you wish life was a Tivo box and you could “bloop-bloop-bloop” you way backwards out of. As we were telling the one nurse who was setting me up with my Chemo how we knew Sue and for how long and that she’d taken trips with us to visit my family in Illinois or if we met halfway in Ohio, Ariel mentioned how he didn’t like this one particular wig she was wearing now, as opposed to the first one she had which was more like her natural hair. He recounted the incident to the nurse “..she came out of her room without her wig and she had the most elegant head of short gray hair and I said to her, Sue, you should show that off instead of that God awful wig…”. Turns out, Nurse Bea had gotten her that wig. Moving on!
My session that day lasted from about 9 in the morning until just before 4 in the afternoon. They’d become a little shorter eventually after monitoring how well or not my system was receiving the chemicals. I was wiped out and feeling sick (I had my bucket) and went to the drugstore to get whatever prescriptions I needed and the Prednisone which would start the next morning and end on Tuesday. I still hadn’t figured out about taking it with yogurt yet.
The next day, and each subsequent Friday after Chemo I’d go back to the doctors’s for my Neulasta shot.
The weekend came, I’m sure we sat outside with coffee, sat by the garden watching tomatoes grow, walked up and down the driveway to get my insides shaken up so I could poop, oohed and awwed at our flower garden in front, loving every second of that precious time. And we waited, waited the entire week to see how the Neulasta would affect me or not.
And it did, but not in my hips. This time, in the middle of the night, it struck me, right in my breastbone. If you recall in an earlier blog post about the pain feeling like an impact and that initial feeling remaining, unrelenting, then you’ll understand what this felt like when I say it felt like a hot sledgehammer struck me in the chest and that first feeling just lingered and lingered and lingered.
I apologized later for the things I said while it lasted, all of which were to the effect that I could not go on any longer. Even though Ariel assures me they were never spoken, I vaguely remember it differently, wishing I would just die, the pain was so unbearable that night. In my delirium I was certain I said those words out loud, but he says I didn’t. I’ve had pains before, such as dental surgery, for example, where an incision had to be cut into my top gum so they could scrape out a cyst in the roof of my mouth and I couldn’t eat for over a week until it healed. And I wasn’t allowed to use a straw because the suction would have been too much pull on the stitches. Whatever I wanted to “eat” I had to drink from a glass. But this sledgehammer in my chest was far worse, worse even than even the incident several weeks prior when the pain was in my hips and it was in my mind that these bouts would only increase and of course I was convinced the chemotherapy wasn’t working.
But the Hydromorphone and Ariel’s tranquil demeanor got me through; he knew this would pass as it had before while I was certain it would never end and what felt like hours he said was only a short span of time. Once again, as he coaxed me to try to relax and to breathe calmly and let the pain pills kick in, he allowed me to meet my devil head on and conquer him on my own terms.

 

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You Should Have Thought of This On Friday

April 29, 2014

Aside from the sporadic feelings of queasiness throughout the day, which the Zofran took care of, and the first few mornings of the Neupogen shots and that blasted quick dissolving gasoline tasting Prednisone tablet, the Uloric tablets to ward off tumor lysis–whereby, much like gout, my joints could suffer when remnants of the dissolving tumor would crystallize on them–and my lounging in a quasi-supine position on the couch in the den, still being propped up with pillows, covered in as many blankets as I could handle without being crushed from their weight (I was constantly freezing), and my mother being here to watch over me, and carrying around my wash basin puke bucket, the first days home from the hospital were quite normal.

I even returned to work. I had to. I needed the distraction. It went slow, I’ll be honest and my bosses all worked with me, knowing my immediate limitations and I can’t be grateful enough for that. I also took naps. I actually planned my days around them. I would carefully lower myself back into my cocoon of Afghans on the couch, set the alarm on my phone and nap for the better part of an hour before going back to work. Of course, lowering myself and getting back up again took up a great deal of my lunch break.

Trying to eat dinner became a chore. I couldn’t eat anything on the dry side. It made me gag. I know I ate more pasta dishes during the first few weeks than I think I’ve eaten my entire life. I was afraid to eat salad, not because a green salad is healthy, but because I couldn’t bear harder food particles going down my throat. And I was force fed water, water, water, water. Everywhere I turned, there was water. Funny story. Ariel was giving me bottled water to drink during the day and I barely drank it. He’d get upset, but it tasted funny, in a bad way, rancid almost. The taste of it made me sick. We tried flavoring it with different juices but only made it sweet repugnance. Afraid I wasn’t hydrating enough, he gave me some from the filtered water faucet and wow, how clean and pure it tasted. So, he got me some sippy cups with screw on lids and had their own straws and I was able to drink my quota each day. The bottled water we figured was a little on the aged side. Crisis averted. AND, I still drink from those cups so I can make sure I measure what I’m supposed to drink. Green one day, orange the next.

For the weekend, my mother went home to take care of her own stuff and she would come back Sunday night. And thank goodness she went home and I was thankful she wasn’t around to witness what went on that Saturday afternoon.

It was a calm sunny day. Ariel and I sat on the patio, armed with my bucket, my water and my coffee and sat in front of the garden. I was feeling somewhat uncomfortable though. It was a sort of pain; not sciatica, and not the back pain which eventually turned out to be cancer–this was an entirely new one, right around my mid-section to the tops of my thighs. I felt as though my bones were breaking and it was non-stop. It had gotten to the point where I could barely walk and at its worst, Ariel was just about carrying me because I could no longer hold myself up as I attempted to get around the patio in hopes of walking it off. Either way, sitting or standing, that bone breaking sensation was full on.

This was the bone pain we knew was coming. Or should I say, Ariel remembered it and I dismissed it, especially at that moment only because the only thing on my mind right then was getting relief and the only thing at my disposal was to try to control my breathing to calm myself and to pray the Hydromorphone tablets (generic Dilaudid) would kick in. Of course it would have been better had I taken them sooner, but this attack came on out of the blue. I’d been taking them at regular 4 hour intervals, but only a fraction of the maximum I was allowed, just enough to stave off any pending discomfort.

I was running low on my Hydromorphone and Ariel tried to get a refill from the drug store and after some finagling, arranged that they would accept a faxed copy of a prescription from the doctor with the promise of handing over the original a few days later after my scheduled appointment with the doctor for my 10-day check up. Plus the folks at the drug store of late were quite well acquainted with me since I’d been living on all sorts of medications over the last month or so.

My regular doctor, Dr. Thomas had originally written that prescription so Ariel called his office. Naturally, being a Saturday, he got the on-call doctor on duty and explained the situation. As I was wincing and clenching the arms of my deck chair and practicing breathing like I was the sole student in a Lamaze class, I could hear a contentious argument transpiring on our end of the phone. Basically, the conversation went something like this: “I don’t know what we’re going to do. I can’t have him be in pain like this. I don’t know what else to do!”. The voice on the other end, I later learned was saying, “I’m sorry, I can’t help you. This is Saturday and we don’t prescribe narcotics on the weekends. You should have thought of this on Friday!”

Oh, drat. I forgot to mention..the on-call doctor that day… Dr. Vera Bitch. And when the time was right, Ariel would report her to Dr. Thomas (and did) but right then he had bigger fish to fry than worry about some ignorant dismissive witch with a medical license. The next thing to do was to call Dr. David’s office in hopes of finding someone there. Making the connection at the oncology office, Ariel once again explained the situation and pretty much before he finished the doctor on call was ready to fax over the prescription to the pharmacy.

I need to mention here, that the bout of bone pain was pretty much on target, timing-wise. It was told to us it would hit me in 7-10 days. Since the Neupogen was administered over a 10-day period, the effects of it were more likely to spike as opposed to the single dose, time-release Neulasta, which I would be receiving after the remaining chemo treatments. It’s beneficial white blood cell building effects would be the same, but hopefully the painful side effects would appear on a more level keel or perhaps even less.

When we saw Dr. David on the following Tuesday for blood work and to get the hard copy of that prescription, we explained what had happened over the weekend and he told us that he was my doctor now, to go through them for anything and everything we needed. This 10-day check up appointment after Chemo would be standard throughout the 18 week period.

I tried to be more vigilant and watch for signs when an attack like this would come on so I could arm myself better against it, but having cancer was all new to me and quite frankly, these episodes could and would strike without a moment’s notice at times and in some very unexpected ways.