My visits with Dr. David had become less frequent by now, and rather than at 10 day intervals, like they were during chemotherapy, I would see him on a monthly basis. I had seen him approximately a week prior to the stent removal and I wouldn’t see him again for blood work until after the first week of the new year.
It was at that visit, on January 9, 2014 we arranged for the second PET scan. He wanted to have it done after the last chemotherapy had had a chance to settle in and do it’s thing unrushed, as the first scan had been so soon after session 4. Either way, we were still a little apprehensive of the outcome–did the chemotherapy do the job? Again, we didn’t want to be too overly optimistic yet didn’t want to be overly pessimistic. So, as we’d always been, we just coasted and trusted what the doctor had to tell us.
The day finally came, January 22, when we’d find out the answer. Since I’d already gone through all the formalities the first time, I was able to skip the orientation and go straight to the Quiet Room. Oh, no, not the Quiet Room again. But I had goofed, when I got dressed to leave I didn’t realize the pockets of my sweat pants had metal zippers so they had to give me something else to wear before I got in the tube. It was a rather fetching pair of dark blue paper pants that were so big even the draw string wouldn’t keep them tight around my waist.
So there I was once again getting my finger pricked and getting infused with glow in the dark sugar.
“Mr.Sigley, we’re going to move you to this other chair because we’ll be bringing in another patient who will be going after you”. Ack! I get myself all resettled and cozy under a blanket and in comes the next patient, behind the curtain. Mind you, it was not a soundproof curtain and that would have come in handy because….
The patient didn’t speak English and his friend, who acted as his interpreter, knew scant more than he did. Oh, Lordy, how many ways can a nurse ask if someone is allergic to any medications before she finally gives up?
Now, see, here’s the irony. I have a language translator app on my phone, either spoken or typed, which might have come in handy had I had it on my person, but I had to surrender it because it’s not relaxing to be playing on the phone. (Tongue clicks sarcastically). This intercontinental discourse lasted for about 20 minutes before the hapless threesome next to me figured a phone call to someone else with better interpretation skills was in order and then the entire matter started all over. Really, is Candy Crush really that much of a distraction?
“Okay Mr. Sigley, we’re ready for you.” B-b-but, I’m not rested.
Once again for about 25 or so minutes I was ensconced in that clanking whirring tube, remaining as still as possible, unsure if my eyes could be opened or should be closed. Again, ask questions!
I kept the paper pants after I changed back into my sweats and left for home; I was ready for food, and Perkins was on the way home. Ariel was poised to call Dr. David at the stroke of 4 o’clock. The time came and in a few minutes, after he had a moment to review the results which had just come in, he called us back. The tumor had shrunk even more . These are the results:
And he cautiously added that, “It’s cancer and we never know with these things” but he also stated that he was confident enough in these results to declare my cancer was in remission.
And that was the best news ever and January 22 officially became my second birthday.
In 5 days from today I will be 5 months cancer free. See? 5’s! My favorite number.
I would not see Dr David again for three months when he would determine if he wanted to have another scan performed then or wait. Time would tell, but for now, I had the news that I was cancer free and so I went about the business of getting back to normal.
Posts Tagged ‘Chemotherapy’
My visits with Dr. David had become less frequent by now, and rather than at 10 day intervals, like they were during chemotherapy, I would see him on a monthly basis. I had seen him approximately a week prior to the stent removal and I wouldn’t see him again for blood work until after the first week of the new year.
Thursday, November 7th came upon us like a freight train, leaving behind the memory of our trip with the family somewhere out in the dust, but I had those few days to get me through another session; memories of seeing everyone and knowing they knew I was really okay and still feeling the sting of being slaughtered in all the card games we played late into those two evenings.
If memory serves, this was the day we brought a batch of Lemon Brownies as our now customary offering. Oh, they were so de-yummy-licious. And really, isn’t the flavor of lemon just so clean and refreshing? I craved lemon while I was going through my cancer more than I normally do.
As usual, we were the first ones in, by 8:30am and it was the usual routine–get blood drawn and tested to make sure I was ready for my session, see the doctor for a few minutes to discuss the results and for a general Q&A session. But it was with Dr. P. Dr. David was on vacation. Doctor P was the one who, when he saw how disfigured I was from all that swelling, when I was still in the hospital, reassured me it was only cosmetic and it would return to normal. He also was astounded that I was still taking a daily Uloric tablet. That was to treat the possibility of Tumor Lysis, a condition similar to gout, where the sloughed off tumor could crystallize around my joints. He said it’s one of those things that sometimes doctors forget to mention. It wasn’t harmful to keep taking it, only unnecessary since it’s usually stopped after the second treatment.
Then we waited for one of my nurses to come in to prep me for my session with an “okay, a little pinch” and then jabbing the IV needle into my port, get settled in my Chemo chair and wait until either Bea or Kay came over to get me started.
First thing, as always, was the initial flush of saline through the IV which I could taste and despised. It was like a pistol going off at the start of a relay race. Then came the Benadryl and the Zofran and in a little while, “make sure you take the Tylenol”. “Did you take the Tylenol?” “I took it, just like you told me..”
Of course we had to stop because, again, the drip began at too high a rate and it made me queasy but after a few moments and some more Zofran I was set back to simmer.
And as usual we were the last ones out for the day, sometime between 3:30 and 4pm and it was time for the cautious ride to the drug store, full of intrigue and mystery–would I need Ariel to pull over so I could be sick?. Would I have to suddenly pee and would I get to my pee bottle in time? “Do you want to come with me or do you want me to drop you at home?” “I’ll go. I’ll be fine. I have my bucket and my bottle”. And he’d park at a remote location in the parking lot so the odds for a little extra privacy, just in case, were greater.
Friday afternoon came and it was time for my Neulasta shot and the waiting period began to see when and where the bone pains would hit. Would it be my thighs again, or my hips? Maybe my forearms or my ankles so I could barely stand. Just please, not my breastbone again. Of all the spots that flared up, that was the worst. I didn’t want to ask to die again.
Ten days later, of course it was mid-point check up day and there was a question whether session number 6 would occur as scheduled, the Wednesday before Thanksgiving, November 27, because it fell inside the three week period and would the insurance company allow it.
The appointment was approved and we got on the schedule, but sadly, it would not be with Dr. David because Wednesdays are his day to for rounds at the hospital. I felt rather sad and in some odd way, it felt anti-climactic. It was my final session and my doctor, my hero, was not going to be there with me. But I had my nurses as usual so that was fine.
But the day went as it usually did only this time the confection was mini no-bake pumpkin cheesecakes with a gingersnap crust, just in time for Thanksgiving. And at the end of the day, as I was about 20 minutes from being released from my confines, one of the nurses suddenly remembered it was Dr David’s birthday, this day he was doing rounds and she called him up. Naturally I chimed in to wish him a happy birthday and I think we all sang to him over the phone. So, in way, he was with me on my final day after all.
Turkey Day was low key, just us and my mother, no fuss no muss and Friday, of course was shot day, but this time we were meeting with Wednesday’s doctor at the hospital, on the Oncology Floor. It was my final shot, at least that’s what we were holding out for and one at a time we were called in to an empty room to get our shots. Dr. Wednesday was not as gentle as the nurses usually were and I felt that shot going in. In face, if I close my eyes and think, I can still feel it. What was he thinking?
But the highlight of that day was when we first got to our floor, who did we cross paths with but Nurse Niki! It was a happy moment for sure and we chatted for a bit and by chance the other nurse who was my second favorite was also on duty that day.
They both thanked me for the “wonderful” letter I’d written to the head nurse about them and the entire staff on that floor. It was posted on the bulletin board in the nurse’s lounge. She said she cried when she read it and then, of course, a tear fell down my cheek as well. But they both needed to tend to their patients and we said our “so-longs” and one more hug and I went to wait with the others until it was my turn for my shot.
Not to belabor this story with the horrors of side affects the Chemo and the shots of Neulasta, the time release shot I was switched to (from Neupogen) after Chemo round #2 brought, I will simply summarize by saying it all went pretty much the same: starting with a blood test to make sure nothing out of the ordinary was going on to prevent me from each treatment, regaling the nurses with the confection of the week, getting set up in my chair away from the TV which seemed fixed on ABC and anyone who knows me knows that since One Life To Live was taken off, I don’t watch ABC and the one time we sat alone in that area, ultimately someone came in and decided to watch that channel and merely hearing those shows that took the soaps’ place was making me sicker than the Chemo was. And of course suffering the nausea and pain afterward.. Sometimes the nausea would set in on the way to the drug store to pick up that infernal Prednisone that would become my enemy for the next five mornings. But I always had my bucket.
There was one incident I had, actually it happened twice on two separate sessions when the infusions had to be temporarily halted. Knowing my system could tolerate the faster drip, (I’m assuming this is the reason) they started me off at a faster rate and it was too much all at once and even though they’d started me out with Benadryl and Zofran (to guard against nausea) the feeling of nausea set in and they had to send for Dr. David to check me out before they could get me started up again. Even with the faster pace of the Chemo drip, I was still the first one in and the last one out of each of my remaining sessions.
I still took my naps during my lunch breaks from work and I looked forward to them. Surprisingly, every once in while, I’d find myself waking up in a more supine position and not in the bolstered up sitting position I started out in. And there was minimal, if any, pain. Ariel suggested starting out that way next time and I could always sit back up if it became uncomfortable. With a little trepidation I did and it was fine. I was able to lay down again and with marked comfort. Bliss!
The true test of all this suffering was yet to come when I would have my first PET scan on Tuesday, October 29, 12 days after Chemo #4. This was to determine how effective the chemotherapy had been up to this point.
Bad news: I had to fast for at least 6 hours for this test. Good news: the test was scheduled for 11am. I was able to have a light breakfast, but before 5 am, so by 4:30, Ariel was downstairs rustling me up some grub: over easy eggs, toast and coffee. Even though I was suffering from a number of side effects from chemotherapy, loss of appetite was not one of them.
The appointment might have been scheduled for 11am, but by the time all the red tape of checking in and preliminary interviews–family history, other maladies I’ve ever suffered, if I have false teeth, what I had for breakfast on June 29 th 1983–and a general orientation had been done, I was glad for those eggs 7 hours prior.
The steps to having the scan were simple. I was to make sure there was no metal on my person (check!), surrender my wallet (check!), my phone (check!), and anything else that might show up in the scan (check!). I was to sit in the QUIET ROOM to relax where a technician would first take a sugar blood test by pricking my finger (that’s relaxing!). Then, they injected a sugar substance via IV (the sugar was radioactive and the cancer is attracted to the sugar..again…relaxing), then gave me a pillow and blanket so I could really unwind in the darkened room for 45 minutes. During those 45 minutes the door to the QUIET ROOM must have opened and slammed at least a dozen times, loud conversations were going on just outside in the corridor and far off slams of doors to other rooms were slamming shut every so often. I was imaging that in the right conditions, I’d be glowing now that I was full of toxic sugar. And, my tummy was growling–the eggs had finally worn off. The QUIET ROOM was not very relaxing and quite frankly, I’d have gotten more rest playing Candy Crush on my phone.
The procedure is pretty much the same as an MRI or a CT scan, you just lay as still as possible on the table that takes you inside the tunnel and it whirs and bangs and clunks for 35 minutes and you ignore that itch that suddenly creeps up in the most unlikliest of places as best you can.
When it was over we were told the results could be ready by 4pm but most likely not for 24 hours. Ariel had other ideas about that and made it his goal to get them as soon as they were hot off the presses.
We stopped for breakfast. Finally! I remember we stopped at Dunkin Donuts for some more of their pumpkin filled donuts. Earlier, for my birthday Ariel brought me some and they were filled with real pumpkin filling, like a pie. On this day it was more like a pumpkin flavored custard filled donut which lacked the impact and deliciousness of the first ones, unless it was just that particular store that was faltering but whatever the reason, they were quite dissatisfying.
And once back home the waiting game began. 4 o’clock arrived like a gunshot at a relay race and Ariel was on the phone, calling Dr. David who, as it turned out, had already been sent the results and his take on them was that the tumor had begun to shrink.
When I was diagnosed back on July 31, the mass had measured 15cm x 8.3cm (5 29/32in x 3 17/64in) and after this PET scan it had melted down to 9.1cm x 4.8cm (3 37/64in x 1 57/64in). Good news indeed, and the cancerous activity seemed to be a minimum.
We were happy. But I still had two more treatments to go (at least), so we remained cautiously optimistic for the time being but we had something positive to share on our upcoming first major outing since the end of July.
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.
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.
Chemo number one was in the books and Saturday morning began without incident. Today, though, was a new treat. Not only was I going to have my second visitor, Brudder #3 (my cousin Ray and another friend, Diane were my first earlier in the week), it was also the first of the series of my Neupogen shots.
Let me tell you a little secret about Ariel before I begin. Much like I used to be when it came to eye related things, ie. when I couldn’t even see drops being put into someone’s eyes or contact lense commercials or eyes being in jeopardy in a horror flick (well, that’s still gross) thanks to a movie they showed in metal shop when I was in Junior High (that’s right, Junior High, not Middle School…what’s that?…sheesh!) where a shard of metal went flying off a lathe into the operator’s eye and the ensuing processes taken to remove it, well... Ariel can’t see a needle penetrating someone’s skin; not on TV and certainly not in real life. Well, real life was about to shake him up just a wee bit more in sort of the same way a mother can roll a Volkswagen off her baby.
Anita had come to give me my shot and was giving Ariel a visual tutorial on how to do it. I was waiting for him to pass out flat across my aching carcass but he held it together. First make sure no air bubbles are in the syringe. Pinch some skin on the back of his arm, insert the needle and push the plunger. Simple. And I didn’t see any sweat break out on his brow.
I remember Niki stopped in to say hello, but she was working in a different area that Saturday and that would be the last time I’d get to see her… for a few months anyway, but that’s still to come.
#3 arrived and we visited for some time and while he was there, Ariel took a quick jaunt home, again to shower and gather the mail and was back lickety split and then the three of us had lunch and I think I had one of the best sandwiches I’ve ever eaten in my entire life that day. It was a chicken salad BLT. What a day to be alive; my cancer was being eradicated and this sandwich was like manna from Heaven.
And then it hit me. Before I could finish one half of that sandwich, a wave of nausea swept over me like the Devil’s broom. The effects of the Chemo had caught up with me and I was armed with my bucket, the little wash tub from the goodie pack filled with personal essentials that greeted me upon my arrival. It would be my constant companion for the months to come. If there’s one thing I hate is being sick and being sick in front of someone else, regardless that in this instance it was out of my control is even worse. I dealt with the pain as best I could, I suffered being poked and prodded and my pelvic bone being drilled into but the mere thought of vomiting was a greater fear. I’d rather humiliate myself in any other way and I wouldn’t be half as self conscious. It’s a phobia, I’m sure.. That, and spiders, and don’t get me started with that topic!
But a little miracle pill called Zofran would prove to be one of my best friends over the next 18 weeks. Within ten minutes of taking it, the feeling of nausea subsided and sometimes I’d get daring and eat. Other times I’d not want to jinx it and just be satisfied with my tummy feeling more at ease. Of course, the more of those I needed to take “wrist band, please” and the more Dilaudid I had to take for the pain “wrist band, please”, the more constipated I got and the nurses were right there with the Miralax “wrist band, please” and the Colace “wrist band, please” to help keep things moving. Wrist band, please!
18 weeks. Written out it doesn’t seem like a long time. But time began to stand still. Each day sometimes felt like 18 weeks.
This cat and mouse game with the onset of nausea continued for the remainder of my stay and beyond and I was scheduled to be released on Monday, if all the stars aligned and my numbers satisfied all the doctors involved, especially Dr. Mambo, the nephrologist. Dr. David sent a prescription to the drug store for a supply of Neupogen so Ariel could finish that dosage once we were home. Someone, the nurse Anita, no doubt, told Ariel the syringes came pre-filled so all he had to do was pinch and poke so that was one facet to pushing over his Volkswagen he didn’t have to worry about.
I was released on Monday, August 12, which, if you recall, was the proposed date, a lifetime ago, when I originally supposed to have my biopsy done and here I was leaving the hospital, biopsied, swollen and nauseous with one round of chemotherapy (of six) under my belt. Before I left the room, the head oncology unit nurse came to visit me to ask how my stay was. I could not find enough adjectives to tell her that everyone made my stay as pleasant as possible, right down to the guy who swept the floors. And really not wanting to discount anyone, I had to tell her the truth that Niki was by far my favorite nurse. It turns out, this head nurse, whose first name was similar to a current singing pop star told me that Niki was named “Nurse of the Year for the entire hospital” and she was glad I felt that way about her.
As they wheeled me out and I passed some of the nurses and aides in the corridor who had been so caring and kind, I wept from the joy of leaving, remembering the lighter moments like when they made me get up and walk around to get my circulation going and me, trying to keep my hospital gown modestly gathered behind me and Niki blurting out “Did you poop or not?” when I was trying to be discreet about it.. Tears fell also in fear of leaving the comforting safety of the hospital, into the unknown neither Ariel nor I wanted to face. But face it we would…together.
Friday, August 9 began like every other day in that hospital bed; Ariel on the fold out chair beside me, the TV on with the speakers by my pillow as low as possible, nurses coming in to check my vitals, me struggling into position to try to pee into my bottle so the nurses can monitor what my kidney is doing. The IV had been removed from my left hand since the port went in. Tubes were dangling from it for blood collection and to administer things to keep me hydrated and to help relieve the kidney thing. I got to be a pro at dragging that IV pole around when I had to get up to use the bathroom.
Today was the day. At first there had been a question whether I’d get my first chemotherapy in the hospital during my stay, or would have to come back as an outpatient, but it was all settled. The main thing was, the doctor wanted the first one to take place there, just in case there was a problem, like if I had a bad reaction.
Breakfast came, I’m not sure what it was, but I was enjoying everything I’d ordered since dinner on Monday. I had no restrictions so I was having a field day. I’m sure one or more doctors came in just to check on me. One of them, Dr. P, an associate of Dr. David’s, after seeing my deformed’ness said it was cosmetic and it would return to normal. I seriously had great doubts then and quite frankly it had become the least of my worries.
Before the R-CHOP chemo started, (it’s quite detailed if you click here), one of the nurses who was going to administer it came in with a stack of papers describing what the R-CHOP chemotherapy was, what I could expect as a result–nausea, hair loss, pain from the shots I would get after it. At first I would be getting a 10-day course of shots of Neupogen. It’s to help increase the white blood cells to ward off infection since the chemo kills those off and they have to be replenished. In the meantime they warned to try to stay away from people with colds, large enclosed public areas like a theater or mall and to stay away from babies especially because the little buggers are just incubators for germs. Of course the doctors weren’t as concerned about those things, so who do you listen to? I was to get the Neupogen for 10 days at least for this round of treatment because the Neulasta, a timed released one-time version had not yet been approved by my insurance company, but should be all set by my subsequent treatments.
There is a question of timing how long my first session lasted but given the average length of my remaining ones, which, between prep and the actual treatment, clocked in at around 6 hours, I’d dare say my thoughts are more or less on the money, that it began around 11am and ended somewhere around 8 at night.
My two chemo nurses came in, Anita and the one I would proclaim as my favorite from then on, Niki. I’m not sure what it was about her, but she was my favorite. They explained what they were going to do, in which order they would do them.
The kick off was some pills and a bag of antibiotics. Following that was a bag of Benadryl. Once that was done, two syringes, about 7 or 8 inches long and about an inch around filled with a red solution (which later, I would fondly refer to as cherry juice) would be shot into the port by hand, one at a time and timed at about 5 minutes each, then the last bag would be set on drip and run its course. Later, as I got my subsequent treatments and the nurses saw how I handled it, they bumped up the speed of the drip of that last bag and so I’m thinking since it was my first one in the hospital, the drip was set to very slow and that was why it took so long.
I was by now accustomed to having my wrist band scanned every time I got something, either pain pills so I could sleep or a Colace to help me poop (I was terribly constipated from all the pain meds I needed) but what fascinated me, every time a new drug was given to me during the chemo session, my wrist band was scanned and I was asked to recite my name and my birth date.
It was a long day and I was not the worst for wear for all of that. Not yet!
I’m not exactly sure if it was November or December of 2012 when I felt a shooting electrical spark sizzle up from my waist area to my neck and shoulders when I was doing donkey presses, my scheduled workout for that particular day. Those are where you lie flat on a bench and pressing a bar full of ungodly amounts of weight with your legs and flex your feet upward, thus stretching out your calf muscles. I was up at 300 lbs. I was apparently misaligned on my bench and performed the lift incorrectly and…. zzzzapppp! For a couple of weeks I suffered this pain until it finally got to be bearable and ultimately passed and I could once again turn my head and walk across the room without grimacing or moaning. All in the name of fitness!
At the same time, I was under the watchful eye of a nutritionist, my new “best” friend, through whose guidance I would ultimately lose 30 lbs and 4 inches off my waist. She put me on a carbohydrate counting regimen; 13 15g portions a day. That meant some calculating and label reading and food measuring. The first pasta night since my “diet” was a hurdle because I can eat pasta with the best of them and here I was measuring out what my allowance was, which, believe it or not wasn’t too shabby a portion. 1/3 of a cup of pasta is considered a serving and because I can have 4 servings at dinner this worked out to 1-1/3 cups of pasta. But, I’m getting off track. My back incident was at the beginning of my time with the nutritionisst and I remember mentioning to her during one appointment that except for this dull pain in my lower back, I otherwise felt great . What she could have done about it, I don’t know, but I went on record stating my ailment.
I continued to lose my weight and inches on into 2013, and seeing my nutritionist at six week intervals, and got into my size 34 waist jeans again. That was a glorious moment, harkening back to when I was busting out of 36’s. I even have a pair of size 38 waist slacks in my closet, but those were an extreme emergency and I just came across them the other day while I was looking for something else. 38?! Never again!
At some point, and I really don’t remember why or when it was but I couldn’t get in to see my regular doctor, Dr. Thomas. He’s impossible to see when you don’t have an appointment so I wound up with Dr. Vera. It might have been for the pain in my back having flared up again or maybe for something totally unrelated. It would have had to be for something important because I’m not a chronic doctor go to’er for every little thing. But given that I also have high blood pressure and my cholesterol is questionable and, as Dr. David, the oncologist, recently pointed out that I’m no spring chicken anymore, I am a little more conscientious about seeing my doctor. By the way, that spring chicken comment will play into the story later on as will my mysterious visit with Dr. Vera. Whatever the reason I needed to see a doctor on that particular day, she was dismissive toward me and made me feel as though I were taking up her time for some inconsequential nonsense and sent me on my way.
Memorial Day Weekend had finally arrived and it was our first camping trip of the season. Man, no one will recognize me, I thought. I’m down 30 pounds, I don’t get winded like I used to just standing up so walking up the hills of the campground should be a breeze now. Life was good, except for that intermittent pain that was beginning to affect the way I slept. On a good night I could get into a comfortable position where it wouldn’t bother me and I was good to go. Yes, wait til they see me.
The general reception of the “new me” was less than I had anticipated. Friends tried to divine some ghastly secret, some illness I was keeping under wraps because I looked so gaunt. Well, it had been over 6 months since they’d seen the old chubbier me. Nothing I could say I think fully convinced anyone it was the weight loss and I had not yet, what? filled in? But then I was starting to question myself. Did I lose too much weight? Should I gain it all back so they’d stop staring and asking questions? Maybe it’s this pre-pubescent-like hair growth I was calling a beard that made me look even more frail? They let it go, but I knew the question was still there, wondering what I was keeping from them. I shaved once we got home and… all better.
Given the time line of events as I think back t0 my appointment with Dr. Vera, I’m sure it was for the pain because I also saw another doctor in the beginning of June of 2013 and this time I know it was for the pain. Again, not Dr. Thomas, but also not the dismissive Vera bitch, but Nurse Practitioner Aman. By this time, the pain had been steadily intensifying to the point where I could not sit comfortably in my recliner at night to watch TV. Some nights were fine but others, I just couldn’t get comfortable and little by little, night by night, as the pain increased, I’d try some back exercises I’d learned years ago when my sciatica got really bad. I had to explain over and over that I know what sciatica feels like. It’s a different type of debilitating pain. Nothing seemed to help. It was becoming a nightly occurrence, usually ending with me curled up on the floor in tears because I simply could not bear the pain.
I also could not lay down to sleep and for more nights than I care to remember, I’d be pacing back and forth waiting for the pain to subside and I began having to sleep sitting in bed propped up with pillows. It was the only way I could sleep with any shred of comfort.
I saw Nurse Practitioner Aman and explained my situation and she concluded it was back spasms. “Will they pass?” I asked. “I don’t know,” she replied. My faith in her waned. She gave me something to take and suggested getting something else over the counter but they did little to help and the suffering continued. This was not the last time I’d see Nurse Practitioner Aman, but I would also finally get to see Dr. Thomas himself.
This installment is dedicated to the memory of my friend, Sue Dillon, who lost her 15 year battle with breast cancer on February 13, 2014.
October 7, 1960. That’s my birthday.
January 22, 2014. That’s my birthday. Well, more like a second birthday. A second birthday after a most harrowing period of my life.
On January 22, I was reborn after a confirming phone conversation with Dr. David, my oncologist, that my Lymphoma was in remission.
I know I cannot possibly compare my case to those who have, have had or will have much more serious conditions than I, but it was my own personal Hell to go through, a hell which really kicked into high gear starting with that damned late morning phone call on Tuesday, July 30, 2013 (“You better find yourself an oncologist“) and which lasted until a few short weeks ago.
It is my objective, during the course of the following weeks of reliving my experience that it not only be a continued exercise in healing but to reach at least one person who may unfortunately need some encouragement. I don’t want to use the word closure because, first of all, I don’t like that word, but to paraphrase the words of my doctor “with cancer…you never know about these things”.
A lot of people called me brave for going through what I went through, but I don’t consider myself that way. I was just doing what I had to do to keep from dying, which, as you can imagine, that thought had taken a firm stance center stage in my mind. And the one thing I know for sure is that I never really asked the question, “Why me?”. I was too focused on getting better. I was determined that Ariel would not finish out our lives together without me.
That’s not to say that I didn’t have my moments when I wanted to give up, that I felt like the suffering wasn’t worth it and I just wanted to be left alone. Fortunately, those moments were few and far between. And I had Ariel, who wouldn’t let me give up, even though he afforded me the time to get through my bouts of anxiety in my own time.
But even during the darkest of days there were some bright ones. There was a light at the end of the tunnel, though that tunnel at times seemed to stretch itself beyond belief.
This was a new experience for me, for us, and all we had to go on was the doctors’ say so as to the course of treatment, what the side effects would be–a time line of events from point A to point B–but none of that mattered to me. To me it was all gibberish, how could the doctor possibly know what I was going through? Well, except for maybe one or two truly minor speed bumps along the way, their predictions were on the money and some things even surprised the doctors and nurses, in a good way.
As you read this, I am currently nursing two fresh bodily assaults: one from having my Chemo port finally removed this past Thursday and two, my new constant reminder that I made it through–my new “survivor” tattoo I had done on Friday.
I half expected the port to be a monster looking thing with valves dangling all over the place like an octopus but it was just this simple affair. I asked them if I could keep it, as a memento, but for sanitary reasons they changed their minds at the last minute but allowed me to take a picture of it. And whether it’s the way the lights are hitting it or it’s actually printed on it, the number 5 is definitely on there, and that’s my favorite number.
The green ribbon on the tattoo, of course is for the Lymphoma and the flowers are from a family artifact; a card from a bouquet of flowers I assume was given by my great-grandfather, JL Sigley (remember him?) to Elsie, my great-grandmother. We just reworked the positioning of the flowers to fit my design.
I thought for a while how best to present this story and those of you who know me, know that when I tell a story.. I tell a story! The best way to fully experience anything is to either be there in the first place, or get as detailed a description as can possibly be painted.
This story may get graphic at times but it’s that harsh reality that will put the stamp on it that needs to be there. Cancer is a shitty thing, to be sure, but, and I’ve said this all along, I think this cancer may have saved my life.
In the next weekly installments, I will take you back to the beginning and we’ll work our way to the present. Depending on how long this series runs, I may be interjecting some present day reports as they come up.
I feel like this might be like a page right out of Dragnet, but while the story is true, I will be using assumed names for my doctors, nurses and most other characters.