Archive for June, 2014

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.

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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.

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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.

 

green ribbon

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.

green ribbon