Archive for May, 2014

Road Trip!

May 27, 2014

Our first major outing since the end of July was to Ohio, Cambridge to be precise, where we would gather every so often for a quick family reunion between here in NJ and the rest of the family in Illinois. When my father became too ill to travel, we’d make the trips to Illinois and visit with everyone there instead.
That’s not to say we didn’t go out during my convalescence, but it was very sporadic and carefully planned. To listen to the doctor, he was pretty much all for going out and having a good time and being “normal”. His only caveat was not to have alcohol on the days immediately before or after chemotherapy. To listen to the nurses, they’d have us quarantined, to stay away from crowded spaces, like shopping malls, to keep away from people with even the slightest hint of the sniffles, especially babies–as they are compact germ incubators, at least for the first ten days or so afterward to give the Neulasta a chance to rebuild my immunity. What to do? What to do?
I wanted to get out, but at the same time I was content with staying in. There was no place I really needed to be and there’s no place like home. No Place Like Home. Ah, right! That was one of our first outings, to see The Wizard Of Oz in 3D. I’d been waiting for that to come out for months and I would really have hated it (and my cancer even more than I already did) if I had to miss it. Luckily we have a theater in the area whose matinees start around 10 in the morning. We were prepared for the theater to be filled with screaming, chattering and otherwise obnoxious kids but surprisingly, it was mainly adults, all 10 of them and two kids who were as quiet as could be.
We saw many movies that way, early in the morning when hopefully no one would be around to sneeze on me. The last thing we wanted was for me to come down with something that might hamper my chemotherapy in any way. We had a finite end date and we wanted to meet it on time.
I as also getting back into the garden a little bit. I spent very little time in the garden and I was so sad. I kept wondering and vocalized at least once whether “will there be a garden next year?”, a question loaded with doom. And when it was time to tear the garden down for the season, which seemed to come so quickly, Ariel handled the major stuff, like putting in the fall crop and would set me up in a chair with a freshly pulled bean bush for me to go through and harvest my lima beans, which by the way is a thankless crop unless that’s all you have in your garden. For all the work that goes into lima beans and for the paltry amount you (we, at least) got out of it, we decided not to plant them again.

eggplants ariel-fall crop harvesting

Of course there was still the rose bushes to take care of and the time had come to plant the bulbs  for spring (poppies and hellebores and new addition to the rose garden–a  purple rose bush which has seven buds as of this writing)  and I participated in that chore from my chair and being Ariel’s cheering section…his orders!  But mine was a very important job of making sure the proper tags went with each plant.

watering  fall gardening

 

And one poppy, only one of eight we planted, successfully bloomed this past weekend, just in time for Memorial Day.

poppie

I hadn’t mentioned this until now because this seems to be a more appropriate place to include it, but after my second round of Chemo, our friends Tim & Shane, from Canada, who we know from camp and have known for more years than we can count, worked it out with Ariel to surprise me with a quick overnight visit on their way to visit friends in West Virginia via a visit to other friends in Connecticut. They didn’t come directly from Canada (though I wouldn’t put that possibility past them); they were already at camp in Pennsylvania. The weekend they chose was perfect because it was after the 10 day “danger” period. And that visit really lifted my spirits and in the beginning, when everything was so new and unknown, I could use all the spirt lifting I could get. They brought with them a get well card signed by as many people from camp as they could assemble.
The trip to Ohio came about because Illinois wanted to come visit me but even though by this time, by comparison to the beginning, I was feeling better, I still wasn’t up to having a houseful of people. I didn’t know how to ask them not to come, when I so needed and wanted to see them and I was at a loss until..
Enter Ariel with his infinite wisdom.  He came up with the idea  that if Illinois was up for it, why not go Ohio and that was the perfect answer to what seemed like an unobtainable solution. It would work because we wouldn’t have to host. If I needed to rest or be nauseous, I could do it in the privacy of our own room and I wouldn’t have to worry and no one would have to feel obligated to keep quiet while I went upstairs if they had come to visit us.
The trip went very nicely. It was awkward at first, having them see me in my frailer state and bald, and after a few ice breaking moments catching everyone up in person with what had been going on instead of the regular email correspondence, we proceeded as usual, hanging out, playing games, hootin’ and a-hollerin’ like we normally do, going out to dinner to Cracker Barrel one night, and an Italian restaurant the next. Both were within walking distance from out hotel even though my pace was much slower than everyone else’s but we made the best of it. I was kind of feeling my oats and wanted the challenge of pushing myself a little.

ohio room the whole gang ohio italian restaurant from hotel
It was during this trip I began making the place mats I posted two weeks ago. That’s just a little FYI.
Of course the visit ended much too soon as it usually does and it also signified the end of this latest three week period because in just 4 days, I’d be back in the chamber for round #5. Only two more “they” would say (and by they, I mean everyone but me) as if that would make things better, but it was still….two…..more!

 

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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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