Fourth And Scan!

May 20, 2014

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.

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Intermission

May 13, 2014

I’m taking a break this week from all the gory details for something a little on the lighter side because my recovery wasn’t all just one big horror story. There were good moments, too.
One of the first good moments I remember was the day of my second Chemo session at the doctor’s office (my first there) when Nurse Bea had asked me for a special favor, if I would please speak with a prospective patient about having a port installed and of course I obliged. She brought me to the examination room where the woman and her husband were with another of my nurses and I told her my experience about having it done and that the doctors suggested it because otherwise the chemotherapy would wreak havoc on my veins if they punctured me every time. Of course I didn’t go into detail about the screaming meemies I had; that was my own personal battle. But I showed her my scar, at that time still underneath Dermabond, which itself was beginning to look a little ratty and showed her the actual port wasn’t visible and nothing was hanging out, like I had first imagined. I had her smiling by the time I left the room and her husband was grateful for my help.
We also started taking treats, in the guise of home baked goodies for the nurses, doctors and any of the other patients who felt like having something. Thankfully I was at my peak during the third week between cycles so I was more up for working in the kitchen then. That’s not to say that rolling out dough for pie crust wasn’t more exhausting than ever before, but I managed. And to top it off, the first one I rolled out was a little on the dry side and kept splitting on me. I patched it up and used it for the bottom crust and the top one was more like it should be.
That was the first thing we brought (on session #3)–an apple pie AND in my 10″ glass pie plate. That thing NEVER leaves my house if I’m not certain it will come home with me on the same trip. But the pie didn’t last very long and someone even washed the plate for me. Other things we brought over the next sessions included Lemon Brownies, with a candied pecan as garnish on each one and mini no-bake pumpkin cheesecakes for the day before Thanksgiving. I know that’s only 3 glorious confections and there were 4 appointments so the jury is out on whether we only brought three, and we’ve wracked our brains to no avail. Maybe it was only 3. Anyway, on the occasion, usually around a holiday such as Christmas or Valentine’s Day, and Easter most recently, I still take a little homemade something for them and their patients.
I might be confusing it with the afghan Ariel brought on one occasion to add to the array of blankets the patients use. In the middle of working on it, he decided that’s what he’d do with it. This is it, apart and completed.

ariels blanket  circle square blanket complete

Speaking of crocheting, I learned how to do it for real during my convalescence. I had previously been working on a spool knitting project seemingly forever with a still endless supply of Red Heart yarn in Painted Desert which is a perfect match for the paint job in the den. Around and around I looped the yarn around the pegs on my homemade spool and I am now the proud owner of a ball about 10 inches in diameter. But that can be monotonous and really, all you get out if it is a long, long strand of woven yarn.

yarn ball

Now that I’ve tackled a few other projects like the drop stitch blanket which took weeks to prototype because it was just a picture on the internet we tried to replicate;

original drop stitch pattern  blanket whole blanket closeup

(original)  (mine completed)  (mine- close up shot)

place mats for the kitchen table

placemats
and scarves seemingly by the truck load to give as Christmas gifts, (these are just a few of the several different designs we worked on)

scarves

I’ve decided on a great way to use up that ball and the countless skeins of that Painted Dessert yarn, which is a checker board arrangement of Entralac (or Cro-knit) squares. The front as you see in the top square is the Painted Dessert and that one is backed with a light tan, similar to the other squares (the backs… or fronts depending on your taste) are coordinating colors. I still have a dark tan to make and that will complete one row. I’ll have 5 colors across and 6 rows down.

entralac squares
While I’m  working on that I’m alternating working on this green couch cover, which is trying to make mincemeat out of me. Working with black yarn is a killer and it’s frustrating, but hey, Cancer didn’t get me, I’m not gonna let some cockamamie afghan get the better of me.
And I just finished the pink one two weeks ago. The arrangement of colors reminded me of a comforter my grandmother used to have and I tried to match them as closely as possible to the pattern, though some of the colors are no longer available. The green is the pattern picture and right now, like the Entralac, is in pieces.

Afghan-couchcover-b  green blanket in pieces strawberry fields-mine
I’ll post the green and the Entralac afghans as they are completed which will be way long after this Cancer series has ended and this blog will have reverted back to what it usually is, about everything and nothing.

 

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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.

One, Two… Jab?

April 22, 2014

It was mid-afternoon on Monday, August 12 when I got home. I felt unstable, uncertain about everything and happy and scared to be at home. My mother met us here; we’d arranged that she would stay with me during the coming week so Ariel could go back to work.

He dropped me home and on unsteady feet, I slowly walked through the rooms of my house, seeing all my stuff, grateful I was seeing it all again and yet it was like I was seeing them for the first time. He helped me down the few steps to the patio and set mom and me up in front of the garden, which looked thriving and neglected at the same time. I was armed with my little wash basin “sick” pail, a glass of water and my crossword puzzle book. I sat taking it all in when suddenly I felt sick and began retching. No, not in front of my mother! Pop a Zofran and wait it out. That wave dissipated and when it seemed safe, Ariel left for the drugstore to pick up my Neupogen shots, which I would get for the next 7 days.

We tried to find some glimmer of humor through the many weeks of my treatment/recovery and this story is one of Ariel’s favorites. The pharmacist asked him if he’d ever given shots before and/or if he had other supplies. He doesn’t quite recall how that conversation went because he was in a daze and just wanted to get what he went for and get back home.

After he arrived home, back on the patio, he found he’d brought home a box of single use vials of Neupogen, not the pre-filled syringes he’d expected he’d be getting. He called the pharmacist only to find out that was the only form available and was told our doctor needed to call in a prescription for the syringes. Already shaken, he called Dr. David who himself was surprised about the syringes but assured Ariel he’d called in the order. He sensed Ariel’s nervousness about the whole thing and said he had confidence he’d be able to administer the shots and to further ease Ariel’s apprehension, he told him if we ran into trouble with the shots, we could go over there (on a daily basis if need be) and a nurse would come down to the parking lot to inject me.

With his confidence renewed. Ariel drove back to the drugstore and the pharmacist took his time, carefully explaining exactly how to load the syringe and remove the air bubbles.

For Cubans, Tuesday the 13 th is like our Friday the 13 th and he kept telling himself not to be “Cuban” about what was to come over the next several days.

Tuesday morning came and I awoke after a reasonable night’s sleep, still propped up with my pillows and it was Ariel’s maiden voyage as shot giver. He said it really wasn’t the loading but actually giving me the shot that had him all jumbled with nerves. I heard him fidgeting in the bathroom and tried to imagine the steps he was performing, equating different sounds like the crinkling of cellophane and that soft flick of a flap of cardboard with where he was in his preparation. What I was listening for really was a thud on the floor, which would have been him collapsing from nerves and then where would we be?

He was taking quite a while and I found out later why. It was just the comical story we both needed to break the tension of that first morning. He took the safety off the syringe and plunged it into the little bottle, ready to syphon up the Neupogen but the needled wouldn’t penetrate and he tried twice, three times to jam that needle through the stopper and the needle was bending under the pressure and he was breaking out into a panicky sweat.

He suddenly remembered seeing little dime size discs dotting the otherwise immaculate floors of the hospital and realized those were caps. He had to remove the harder outer cap first to expose the softer rubbery stopper and loaded up a brand new unbent syringe, tapped the bubbles out and came into the room to give me my shot with renewed determination and without a second thought and quite frankly, it went smoothly. I remember I hardly felt it. The remaining shots were given with the same confident authority and all we had to do was let the Neupogen do its work; rejuvenate my white blood cells too boost my immune system.

I also had to endure a 5 day course of Prednisone. I needed 100mg of it to counteract the fatiguing aspect of the chemotherapy and it was broken up into 5-20mg doses. I hated those pills because they dissolved very fast and tasted like gasoline or acid… well, something that has no business being in your mouth. I think it was during the second course of chemo that I thought of taking each pill in a spoonful of yogurt so it could easily glide down my throat and unless I had the pill positioned wrong it usually worked like a charm.

The cure was underway and I was at its mercy.

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Chemotherapy #1. Aftermath!

April 15, 2014

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.

green ribbon

Chemotherapy. Round 1.

April 8, 2014

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!

green ribbon

Ode To The Pin Cushion

April 1, 2014

We left the doctor’s and headed for home to pack some clothes and personal items in a bag to take to the hospital At once I couldn’t imagine why I needed to pack things and I was unsure if we’d packed enough. We got to the hospital, scared and stunned and answered questions at the admissions desk.

Cancer. What was going to happen? What were Dr. Thomas and Dr. David talking about with their exchange of blah, blah, blah’s a little while ago back in the examination room? Cancer?

I think I kind of went into “adventure” mode a little bit because when we got to my assigned room, I began exploring, checking out the amenities, where the electrical outlets were so I could plug in my phone, what the bathroom was like, that sort of thing. Where was the nurse? She was supposed to meet us?

When she finally did come, she moved me to another room, closer to the nurses station. Oh, shit!

I settled in and nurses began to arrive, introducing themselves and someone came in getting a profile on me, asking me questions, some general and some private and at one point she asked Ariel to step out of the room for a moment so I could answer honestly whether or not I was a victim of domestic abuse.

It’s all a blur, that first day in my hospital room, but different doctors all came in throughout the day to introduce themselves and explain the different things that were going on and what they were going to be doing to me. So much information to process.

I was in a private room and Ariel stayed with me during the entire time, leaving only twice to go home and check on the mail and to shower, for which he got reprimanded for not using the shower in my bathroom.

One of the procedures that was going to be performed was the installation of a ureteric stent between my failing kidney and bladder to try to help relieve the water retention I was experiencing (I gained 20 pounds of water weight) and the grotesquely advanced swelling of my privates and my body from the waist down to my feet. The urologist said his first priority was to use an internal stent, which would be inserted through my penis, or if the stent did not work, a bag to collect the urine would be attached to my side until the condition cleared. I was ready for anything. My focus was to get better. Do what you have to, Doc! To be honest, I was relieved he was able to get it done using the first method.

stent  stent 2 This is what it looked like and how it was inserted. I was surprised because I had no idea what it was and that it was a big as it was. When it came out, back in December (the 18th) I got to see it. It was approximately 9 or 10 inches long. I had imagined it would be made of metal a was small thing because  I really had no idea how far apart the kidneys are from the bladder.  No wonder I failed biology in Junior High.

From Tuesday the 6 th on, it was a busy, busy time. The stent was inserted, I had a doppler scan on my legs to make sure I was getting enough oxygen flow through my system and to check for possible blood clots, I had the biopsy which showed for certain it was the Type B Lymphoma and had a bone marrow biopsy.

Quick funny story about the stent. Of course I had already been informed of the two possible ways it could go and I answered yet another battery of questions such as “do you know why you are in the hospital?”, “what is your name?”, I guess to make sure I was still of sound mind. Well, as Dr. Stent (we’ll call him) was finishing up my prep to get himself ready to do the deed, I said to him, “Let’s blow this clambake!” He turned and said, “What? I’m a Jew. What do I know from clams?”. We all laughed and we still reference that line from time to time.

I joked also with the nephrologist. He checked in with me pretty much daily keeping track of how my kidney was functioning, which they monitored with blood tests and urine output. At one point, taking from an old joke, I said, “When this is all over, will I be able to do the Mambo?” He was too quick for me and asked me, “Could you do it before?” So he henceforth became know as Dr. Mambo, for real, because we could never remember his name.

And I also had my chemo port installed and that was a bit of a fiasco. For all the different procedures I’d had done, I was wheeled around on a gurney, propped up as comfortably as they could get me and the tests were done with similar consideration because of my back. Imagine what a tree branch might feel like in your hand as you are about to snap it. That’s what I was feeling.

In order to do put the port in, in spite of my protests and quite audible cries of pain, they had to lay me flat. They tried to put a wedge pillow under my knees to help alleviate some of the pain. They instructed me that I really shouldn’t squirm because the table I was on was not much wider than I am. My head was turned to one side and covered with surgical paper, creating a tent so I had air to breathe. There was an opening to my left that faced a wall and a clock. That was a mistake because after they had me all set up and prepped I had nothing to do but watch the clock. And cry. And scream. And watch the minutes turn into an hour while we all waited for the surgeon to finish up with another patient. I begged the nurse who came around to where the opening was to try to keep me calm with conversation to please let me up. Please let me up. Please LET ME SIT UP! It was almost like a scene from The Excorcist and I was Linda Blair, minus the pea soup.

The actual surgery was a breeze by comparison. Because I have that Atlas tattoo right in the optimal spot for insertion, they had to decide how much lower they could go without cutting into the tattoo itself. Not that they didn’t want to mar poor Atlas, but the area was contaminated with the ink and they wanted a cleaner spot. They said if they could not work something as close as possible, they’d then have to go in through my nipple. That kind of made me wince, even over the fiery discomfort I was already going through.

get-attachment[1]  This picture is actually from the removal, which happened this past February. It looked the same, basically, with no visible lump where the port was and with that film of Dermabond across the incision, which is meant to come off in its own time. No pulling.

Bless that nurse’s heart, she tried the best she could to keep me calm and through conversation we discovered she was friends with the daughter of the guy who actually built my house back in 1954. She even said his name and it matched the imprint in cement of the front walk.

Back in my room, Dr. David dropped by to take a bone marrow biopsy which entailed my having to lay on my stomach while he twisted some auger-like thing into my hip bone and pulled out a sample of bone marrow. He showed it to me. It looked like a bloody and grainy inchworm.

bone marrow I’m assuming this is more or less what was happening back there while I was laying face down.

I was all set now for my first chemo treatment on Friday, the 9 th, so it was business as usual back in my room; trying to find something worth watching on the TV, playing Candy Crush on my phone, having the barrage of visitors; the food people with my meals, the clergyman, the newspaper guy and like clockwork, the nurses were in and out like they had been all week all hours of the day and night, taking blood, giving me pills, making sure I was eating and drinking and peeing and pooping. And by now I was totally theirs, my future was in their hands

 

When A Doctor Calls

March 25, 2014

Before I continue my narrative, I have to make a correction of sorts. Last week, I commented I felt somewhat embarrassed that so much time had passed… Well, I think I should have clarified it further that I felt somewhat embarrassed that so much time has passed when, in retrospect, I probably should have had that back pain checked out when it first started flaring up again, even though I had seen those other doctors in the interim, but that was only after it had started getting out of control.

A week after seeing Dr. Thomas, on July 24, 2013, I saw Dr. Bones. He came into the room where Ariel and I waited after I changed into the obligatory paper gown, scowling as though he were already late for a golf game and had predetermined that I, being his last patient of the day, was going to be one of those difficult ones that would hold him up indefinitely. Right away I wanted to get to the point of my appointment and quell his misery as quickly as possible.

He put me through a similar battery of motor tests Dr. Thomas had done the week before; he pressing against my feet while I tried to kick out against his resistance, standing on one foot then the other, walking across the room carrying an egg on a teaspoon clenched between my teeth with my hands tied behind my back. Hmm, no, that’s a stunt on Beat The Clock.

Dr. Bones' Office

His report was the same that it was nothing I did, referring to that donkey press incident and my motor…whatevers….were fine. But, he ordered an Xray and off I went with his nurse to get some films done.

In the Xray he detected a slight curvature of my lower lumbar and noticed that the soft squishy stuff that cushions the vertebrae was gone from between 2 discs and they were rubbing together. He said the condition is known as DISH, Diffuse Idiopathic Skeletal Hyperostosis, basically a degenerative form of arthritis Okay, great, finally we had something to go on and maybe relief was on the way, whatever the outcome. Would I be able to work out again? Not that I’m as fanatic about it as I was in my younger days, but it’s my little escape during the day, or a good way to start the day, especially in the warmer months so my lunch time can be spent in my vegetable garden or just relaxing away from the computer for a few minutes in the sun.

He prescribed some muscle relaxers, some pain killers, some anti-inflammatories all of which I went through like candy. For one who is not so into taking medicines, at this point I welcomed anything that would help. He also suggested some physical therapy, located in the same building, for several weeks.

Dr. Bones also ordered an MRI which would take place at his office not far from my house 5 days later on July 29. I met with the MRI technician who told me what I needed to do and he assured me it would take no longer than 20 minutes. I told him I would try to hold out that long and remain as still as I possibly could because I could not lay down. I managed it and needed help to get into an upright position so I could make my way back to locker where my clothes were, changed and meet with Dr. Bones for the results.

His words meant nothing and doom to me all at the same time. Nothing because they were big important sounding medical terms and doom because it meant something was wrong. He said I suffered from spinal stenosis, which I later learned is a narrowing of the spinal canal. In terms of those three uncushioned vertebrae, he said he could fuse them, but that would give me limited mobility and he didn’t think I’d want that. Since the pain wasn’t affecting my legs, surgery seemed unnecessary. And there was also an undetermined protrusion of some sort jutting out toward my spinal column. He had no idea what it was.

He had to explain all this to me twice and then a third time after I got Ariel on speaker phone so he could repeat it one more time so at least he might better understand the unintelligible string of words being thrown at me meant.

That was a Monday. Tuesday, July 30, late morning, the phone rang. I saw Dr. Bones’ name flash on my caller ID. He spoke, I listened. He said he conferred with a colleague over the MRI and Xray results and some blah, blah, blah and then…… “I think you better get yourself an oncologist.”  Silence.

I knew the word. I’d heard it before, but what it had to with me I had no idea. And it was said so matter of factly. I finally spoke. “Are you talking cancer?” Again, matter of factly the reply was “Yeah.”.  And it was determined that I could continue taking the pills if I wanted, but the physical therapy was useless. “We’ll do everything we can for you.”  We’ll do everything we can for you? Was that his way of saying the end was coming?

“You better get yourself an oncologist”. Those words will stay with me for the rest of my life.

I’m not sure exactly what happened next, everything kind of went black, though I vaguely remember clumsily texting Ariel to call me.  The next thing I knew he was here and in between his call and his arrival home, I think I sat here at my desk, continuing to work, or maybe just shuffling papers around, trying to reconcile what had just happened. I’m pretty certain at some point that afternoon, some sense of clarity set in, at least on Ariel’s part, because obviously Dr. Thomas was called to find out what the next step should be.

The next few days, according to the calendar went by quickly. According to my mental state, time just stood still. The day after that fated phone call, I had a CT scan performed which determined the size and position of the tumor which was assumed to be Lymphoma. The conversion of the metric figures brought the size of it to around 9″ x 4″ and it was located behind my stomach and crushing my right kidney, which, as it turns out, explained the disfiguring swelling of my private parts. Two days after that, we (Ariel and I) met with Dr. Thomas seemingly in the wee hours of the morning, but it was more like around 8am and I had some blood work done and we discussed oncology care.We had already been searching for and found an oncologist that Ariel and I both liked and who was also recommended by our boss, who himself is a doctor, but this man was not available until October. His colleague could take me, but the questionnaire just to get in to see this guy seemed overly extravagant, but we needed an oncologist and here was this one.

Dr. Thomas said he’d work with whoever we wanted, but had a suggestion of his own. Dr. David. And he could see me much sooner than Dr. Questionnaire could. Dr. Thomas has been my doctor for years. He had never steered me wrong in anything so what was the harm in seeing Dr. David? My life was in the balance. We were to meet with him on Monday, August 5 and in the meantime, Dr. Thomas was having his nurse set up a biopsy as quickly as possible but that could not be until Monday, August 12.

He also asked me if I wanted to go on temporary disability but I emphatically declined. I had no idea what was coming down the pike and I am the first one to admit I have the propensity to make mountains out of mole hills and I didn’t want to have “free” time to sit and think. I was faced with a seemingly insurmountable mountain right from the start and who knew what was on the other side of it. I’m not sure where it came from, probably from corner of my mind that was still refusing to believe what was happening,  but at one point during the visit, I managed to croak at my doctor, “I lost 30 pounds…for this?!” Somehow we all chuckled, but he assured me that the weight loss would benefit me during my recovery.

Monday, August 5, we found ourselves in exam room 5 (5’s all around, my favorite number) with Dr. David and in a short time sent for Dr. Thomas to confer and together they decided it best to not wait until the 12 th for the biopsy but to admit me that day into the hospital and have the biopsy performed there. They needed to know for sure it was Lymphoma and to determine whether it was type B or type T, B being the “better” type to have in this case. It is more easily treated and cured.

Either way, both my doctors and the main guys at our job were all of the same mind, “We are going for a cure!”.

Adding Insult To Injury

March 18, 2014

Our June date to go camping didn’t fare much better, but at least my appearance was not an issue for everyone this time around. Maybe I had started evening out or the initial shock of seeing the “new” me had worn off and that was good. The only thing that was a deterrent was the pesky pain in my back that wouldn’t allow me to get comfortable. But it’s camp, and that alone comes with its own set of discomforts but it’s something we look forward to all winter and we elected to grin and bear my discomfort. I wasn’t sleeping comfortably at home so what was the difference if we were out enjoying ourselves?

A few weeks later, as summer vacation during the 4th of July  was fast approaching and as if the debilitating pain in my back wasn’t enough, out of nowhere,  my left ear suddenly felt clogged, like I had gotten water in it and I couldn’t get it out. I tried an over the counter remedy and the grandfather of all cure all’s, hydrogen peroxide, but I still heard things as though I were under water. And I felt like my own speech was compromised because I couldn’t deal with sounding like I was yelling in my own ear.

Call the doctor’s office–this was beginning to be an annoyance. Suddenly I’m falling apart and becoming “that” guy that runs to the doctor for every little thing. Once again with Nurse Practitioner Aman who didn’t remember me from the back spasm appointment, (how’s that for reassuring?) but nonetheless I apologized to her for not getting back to her like she had asked to let her know how her dose of that sample pain killer had worked. Onto my new ailment. Did it have something to do with that back problem? Would I be going deaf?

I explained what was happening, dismissing the back issue for the time being and said I’d really like to try to clear it up before vacation, Dr. Aman prescribed a course of Prednisone to take care of it. 6 pills on day one, 5 the next, then 4 and so on and lo and behold, I was hearing like a champ during our time in Rehoboth Beach and best of all, which never really occurred to me until after we were home again, that I was able to sleep normally–in bed, laying down. Flat! So, whatever it was, had really been a temporary thing and the Prednisone had taken care of both my ailments.

angela  maduros boardwalk

But then reality set in when the Prednisone wore off a day or two after we got home and I was once again a curled up bawling mass of flesh on my living room floor, night after night with no relief in sight. Coincidentally, Ariel’s father, also on Lipitor for his cholesterol was having pains in his legs and with some research, we found that certain statins, such as Lipitor, can cause bone pain, and,…get this!…in the hip area. Bingo! That must be it.

Ariel had an appointment with Dr. Thomas on July 17 to review his recent blood work but decided it was more important that I see him so with a call to the office to switch appointments so I could get the ball rolling with my own doctor to get this back issue taken care of once and for all. Plus Ariel already had an idea of how his conversation would go with the doctor, that some of his test results were out of whack and they needed to be corrected.

After we spoke about how pleased he was at the amount of weight I’d lost thus far, we started discussing my back problem and I felt somewhat embarrassed that so much time had passed before seeing him, though I had seen those others. I told him about the zzzzapp sensation from months prior and how it passed and flared up again. I mentioned I’d just done a course of Prednisone for my ear and oddly he asked “How was your back when you were taking it?”  He did a battery of physical tests and assured me nothing was wrong structurally. We talked about stopping the Lipitor to see if the pain would decrease or go away and he agreed with those findings and told me to go off it for two weeks, give him a call and see how I was doing and if it was still an issue, he’d set me up with an orthopaedist.

Not even a week later, the pain had intensified so greatly to the point that more than once I proclaimed aloud that if I owned an gun I’d shoot myself. There was no relief in any way, shape or form and shooting myself would be the only way out.

I’m not sure if I can accurately describe the pain, but I will try. At first, with that initial zap during the calf exercise months prior, it was a warm stinging sensation and I could feel the tightness all up and down from my middle to my neck. As it progressed, when it began to reoccur on its own, I felt that same sensation. But as time went on the pain was centered more exclusively in my lower back, not shooting up to my neck. At first it felt kind of like the stressful pain you might feel in your upper back after lifting heavy bricks all day, but in your lower back. As it intensified over time, the sensations ranged from how I imagined it would feel if someone had shoved a dull knife in my back to being smashed by a sledge hammer and that initial feeling upon impact remained indefinitely. The more I would try to stretch it out, the worse it would feel and more often that I care to remember, I’d end up drooling uncontrollably like a rabid dog until the added stress from the stretching had subsided. I had mentioned this to Nurse Practitioner Aman and her response was a quizzical and uncomfortable blank stare.

There was no way I could wait the two week test period of being off the Lipitor and I called the office in tears and out of breath one morning asking to speak to the doctor, but he was away on vacation and I recounted  as calmly as I could the conversation between him and me a week prior and I said I could not last another week and one of the times I spoke about shooting myself was to the receptionist on the other end of the line. Apparently there was no record of this arrangement between Dr. Thomas and me and the nurse’s hands were tied, she could not help me without the doctor’s say so and thus could not  tell me what to do other than finding an orthopaedist would rest on my shoulders. I cursed the hell out of those nurses for being incapable and uncaring and went about finding Dr. Bones on my own.

By the time our July camp date arrived, it was useless for me to deal with trying to sleep on an air mattress as sleeping in my own bed was becoming a nightmarish chore and it’s next to impossible to stack pillows against the side of a tent so I could try to sleep that way and we ended up canceling our weekend.