Archive for the ‘Cancer Story’ Category

Eighteen Weeks

July 1, 2014

twins ovalI made an appointment with my regular doctor, Dr. Thomas sometime in late February to discuss my once again elevated cholesterol count that was found in a complete blood work up I had done. It wasn’t obscenely high, but it was climbing and higher than where I had left off when we thought it was the Lipitor giving me those pains when it really turned out to be the “C” word. We discussed, as we did way back before I started on the Lipitor that I wanted to try to get it controlled on my own with diet and exercise.

In the span of three blood tests between the end of 2013 to February of 2014, it had already started dropping on its own. It went from 289 in December 2013 to 277 in January to 266 in February. I had already begun a more regular exercise regime (as much as my still recuperating body could muster) and my diet got better after the first of the year. I had been living on pastas and ice creams and pies and cookies–all the yummy comfort foods I could get a hold of. Fortunately (and I say that with tongue in cheek) that during the chemotherapy, all that sugary goodness was just maintaining my slight weight. But after it was all over, I knew I had to cut that stuff out because otherwise I’d easily be back to at least 30 pounds overweight and back behind that eight ball.

Then, around the end of April, about the halfway mark between “official” cholesterol tests, (meaning between February and my most recent one which was two weeks ago) we wanted to see how I was progressing and the numbers were even better than before and my cholesterol by now was down to 212, a cool decrease of 54 points. As it turns out, two weeks ago, the numbers had increased again slightly and it’s back up again to 256. Not terrible and completely fixable on my own and that’s my new goal as is once again losing this annoying spare tire yet again.

On May 1, I had my follow up visit with Dr. David and because I had just had all that blood work done the week prior he said the routine blood normally done in his office was unnecessary; he went off the other results, a copy of which we had sent to him anyway.
Then came the decision about the next PET scan and he wavered a bit and finally decided that having it done now (in May) would be superfluous and given the blood results and, of course, the PET scan results from January, he decided to wait another 3 months for PET scan number 3 so by the end of July or early August I’ll be having that done.

Well, everyone, coincidentally, this final official blog entry in The Cancer Series is number 18 and 18 is the number of weeks I was undergoing treatment for my Lymphoma. Eighteen weeks sounded like such an eternity that day, hours before I was admitted to the hospital and so many days during that time themselves felt like 18 weeks.

And now, with 20/20 hindsight, looking back at March 4 when this blog series started, 18 weeks really is no time at all and I’m grateful it was a finite time frame. I know there are so many whose prognoses are a lifetime of what I went through and in the scheme of things, I really had it easy, by comparison.

There are many things in my life I’ve always wanted to experience; see a tornado–from a safe distance, of course; experience an earthquake, which I’ve done, in Springfield, Illinois, of all places, a 5.4 one on the morning of my niece’s wedding in April of 2008. Those are two examples that readily come to mind. Going through cancer was not one of the things on that list. But having gone through it gave me a new perspective. I don’t know how much altogether it has or will change my overall outlook on some things, I’m pretty set in my ways, but for the most part I’ve learned that it’s not worth sweating the small stuff and, wisely…

 

story

 

 

I want to thank those of you for keeping up with my blog these past weeks. It helped me to write about my experience, to get myself on track with it and if I was able to touch one person who read this, then that little blip in my life was worth it.

Now I have to start thinking of things to blog about. I have a few ideas but my forte is, as many of you know, being snarky about just about everything under the sun so I always have that to fall back on. Plus, as they fit, I’ll be updating you with doctors’ visits and what not.

Happy early Fourth of July and to all my Canadian peeps, Happy Canada Day today.

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Celebrating Remission!

June 24, 2014

Good news indeed. I was in remission! And the next step to putting all this behind me
was about to happen after a follow up visit with Dr. David a month later on February 20.
“Let’s get that port out of ya”, he said and we made the appointment for the following Thursday, February 27. Back around the time of chemo session #3 or #4, I had discussed with Dr. David about my getting a survivor tattoo when this was all done. I wanted his thoughts on when he thought would be a good optimal time when I wouldn’t be at risk for infection and together we had decided on around March and here with a week left in February, that was pretty good timing. So, after we left his office that day with my port removal appointment all set up, we headed over to the tattoo parlor and the date for that was set for the day after the port came out.

I was told I’d have to fast for the port procedure and of course that was a bummer, but then I got a phone call from the hospital the day before and the woman on the other end of the line said that if I was going to be put under I’d have to fast, but since I elected to go with just a local anesthesia, like I had when it was installed, I was good to go. I could eat. Yay!

It was the same team as before and they all remembered me, especially the poor nurse who suffered my insane screams of pain six months prior. And they were all astounded by how cleanly the incision had healed, even the surgeon, who recognized my Atlas tattoo. They got me set up like before. This is an IV just before they laid me down and covered me with surgical paper over my head, tented on the opposite side for ventilation, slathered some green-blue antiseptic stuff all up and down my chest and neck and numbed me up.

port removal prep

All was the same except now I was actually, for lack of a better word, enjoying this experience. The nurse and I talked again how she knew the girl who lived in my house, whose father built it way back in 1954 and the surgeon told me he lives just across the river from me. It was a fun bonding moment that went no further than the operating room.

It seemed like an eternity to get the port out, I kept hearing chatter like, “No, cut from this side”, “I think I have to go at it from this angle” and the like. Oh great, a novice port remover person. And squeezing and pulling and pressure. “You still with us, Mr. Sigley?”.  Then it seemed an equally long passage of time when they were closing me up and for the amount of time he was working on stitching me up, I half expected to have an embroidery sampler on my chest.

They allowed me to take a picture or two of the port (which I showed you at the beginning of this series) but I wasn’t allowed to bring it home as I hoped I could because it had tissue on it and for sanitary reasons I had to leave it behind. Alas! There was a spirited debate over it, between all involved, though.

port

Now all that was left was to get taken back to the “recovery” room where my clothes were and to have the rather enjoyable turkey sandwich box lunch they had ready for me. I had intended on stopping for a pork roll and cheese sandwich on the way home, but they wouldn’t let me leave until they saw that I had eaten and by then I wasn’t hungry for pork roll and cheese. And one of my fellow chemo patients from Dr. David’s was just coming in to have her port removed and she pointed out that I was the one who always brought food in during chemo sessions.

At the tattoo parlor the next day, I had an interesting conversation with the girl who did my work. Turns out, she lived in my old neighborhood and is friends with the daughter of the people that moved into our house in 1985. And she knows the kids of the kids I grew up with. We talked about some of the neighbors that no longer live there and some that are and decided that in every neighborhood there is at least one “witch” and in this case, we had “witches” for different sections of our street. It was a fun afternoon.  Dinner, of course, was the obligatory stop at Outback Steakhouse close by, our tradition whenever we get new ink.

I had the weekend to recover from both assaults.

~~~~~~~~~~~~~~~~~~~~~~

I see the scar on my chest on a daily basis and I rub a finger across it. And of course, the green ribbon survivor tattoo on my forearm is out there for the world to see and at least once a day run my hand over it.

port scar survivor tattoo

These are my battle scars, reminders of how lucky I was and a smile comes across my face. These days that smile is not as hesitant as a few short months ago. They are reminders, also, that my case, by comparison to what some other people go through, was like a cake walk, but it was still my own hell, my own battle.

As I caress those two scars, never mind the emotional scars in my mind, it brings back the sounds of my first cries when I heard the words “you better get yourself an oncologist” over the phone, to the sounds and smells of the hospital. They remind me also of the feelings of sickness and pain and the thoughts of giving up and letting go. And there were the uncertain times such as not knowing whether the cancer was really being wiped out or whether I’d live to see another vegetable garden.

I am reminded also through my battle scars that I had a great support team; my family, my friends, my doctors and nurses. Words cannot express the gratitude I feel for each and every one of them. And then there is Ariel. I don’t know what my experience would have been like without him by my side, and thankfully I don’t have to wonder about that. I told him one day while I was in the hospital that I wasn’t going to let him live out the rest of our lives without me. And here I am. And I don’t take that for granted.

I wear my battle scars proudly.  And, oh, how I also detest them.

 

Editorial Note:

This past weekend I had an eye exam and upon asking how my general health was, I discussed with my eye doctor that since my last visit with her, nearly a year to the day (and really about a month and a half afterward) I was diagnosed with lymphoma and was now in remission.

Out of curiosity, she asked if I’d ever had mononucleosis. I did, more than 25 years ago. She mentioned how she’d read there is a correlation between mono and lymphoma cases so, later, after my exam, I looked it up. Some articles say yes, some say not so much, but still… something to think about.

By the way, my eyesight also improved slightly, I didn’t need as strong an Rx as I’ve been having in the past.
I don’t recall if there was a spot on any questionnaire I filled out during all that about previous illnesses and if there were, mono was never on my mind and certainly I was never asked otherwise I would have said so. I definitely will bring this up with Dr. David next time and see what he has to say about it.

In the meantime, here are two of the articles I found on the link between momo and lymphoma.
Article 1 and Article 2.

January 22, Happy Birthday!

June 17, 2014

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:
Capture
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.

green ribbon

Here’s Your Little Friend

June 10, 2014

I have to backtrack a little bit because I forgot a curious little tidbit. I thought it was after my first PET scan, but looking back at what I wrote last week, it couldn’t have been so it must have been during session 4, back on October 17. Sorry, just momentary a case of chemo-head! It happens.

I had asked Dr. David if it were somehow possible for me to see what my tumor looked like and he was more than happy to oblige. Out came his iPhone and after a few clicks, there it was in glorious black and white, the image from my original CT scan. He pointed out my bladder and my kidney and the tumor, which, if I was looking at the correct image, looked to be in the shape of the state of South Carolina and it seemed to take up most of my mid-section.

What puzzled me was how the stent fit between the bladder and the kidney. Well, first of all, I had no idea at that time what the stent looked like and I pictured it in my mind as a smallish object, maybe 2 inches or so, made of metal, that somehow pierced those two organs. I never questioned it, though that would explain the occasional pinch I would feel up inside. That’s a lesson learned, for sure. Ask questions. It was only later, after it was removed that I learned what it really looked like (and I posted a picture of it early on in this series). Here’s a composite of how I remember seeing the tumor on Dr. David’s phone, except it was shades of gray. Hmm, shades of gray, sounds like a great title for a book.

stent-sc

 

On Wednesday, December 18, I had my appointment with Dr. Clambake to have the stent removed. Everything was starting to get buttoned up on this chapter of my life, one step at a time.
The receptionist at Dr. Clambake’s had said, over the phone, the procedure was easily done in the office and I couldn’t imagine such a thing, considering the ceremonious procedure to put it in, having to put me under and have me sign all kinds of waivers in case I never awoke from the anesthesia. Would they put me under again? Would I be awake? Would I bleed? Would it hurt? Knowing how it went in, I joked with whomever I felt discussing it with that I wish I could send “it”, meaning my “you know” ahead and have it taken care of. I stopped that joke when the nurse who was prepping me didn’t appear to find it amusing. Plus it was coming out, so why continue with it?

After I got all through with all the requisite paperwork the nurse brought me into the room and had me empty my bladder and change into a paper gown but keep my shoes on so I didn’t slip on the floor. Then she explained what was going to happen on this very evening, that I might experience blood in the urine for a day or two, that I might have phantom sensations that the stent was still in there for a while. Great scare tactics!

Enter Dr. Clambake, who appeared more towering and imposing than in his hospital scrubs back in August. Dr. Clambake became Dr Let’s Get This Done! But why wasn’t Nursey Nurse Nurse Nurse leaving the room? Oh no, don’t tell me she’s going to watch. Wait, he’s an accomplished doctor, he doesn’t need her help. “Lay back, Mr. Sigley”. Oh God, she IS staying and assisting. Oh God, she’s gonna see me naked. Then I heard them speak in medical jargon for a few and I felt something going on down there. I think she was holding the light, or the scope or playing Candy Crush, I’m not sure, but Dr. Clambake said “Okay, it’ll just be a minute” and I felt some pressure like I was going to, well, go and it reminded me of the story both my mother  and my uncle always recount of the time when I was a baby and he was changing my diaper for the first (and probably last) time and didn’t realize he needed to cover my “area” because I got him good, like a Roman fountain.

“Aaaand here’s your little friend,” Dr. Clambake said, dangling that 9 or 10 inch long piece of cord over me.

 

stent 2

“You’re done”. Do I need any antibiotics? “No, get cleaned up and dressed and go home. You’re fine! Nurse, give him a dose of “X” for pain. Call me if you need anything!” And there went Dr. Clambake to parts unknown.

The entire actual procedure lasted less than two minutes, if it even took that long. I did as he said, took the pain pill when we got to a restaurant, Carrabba’s, for dinner, which also served a as a celebratory one. Hey, any reason for a party, right?
I never did experience any ill effects except a minimum of burning during the first pee post-stent and I never did have any phantom sensations of it still being in place, but I guess they have to let you know what might happen so they’re covered.

 

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In The Home Stretch

June 3, 2014

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..”

chemo session

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.

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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!

 

green ribbon

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.