Archive for April, 2014

You Should Have Thought of This On Friday

April 29, 2014

Aside from the sporadic feelings of queasiness throughout the day, which the Zofran took care of, and the first few mornings of the Neupogen shots and that blasted quick dissolving gasoline tasting Prednisone tablet, the Uloric tablets to ward off tumor lysis–whereby, much like gout, my joints could suffer when remnants of the dissolving tumor would crystallize on them–and my lounging in a quasi-supine position on the couch in the den, still being propped up with pillows, covered in as many blankets as I could handle without being crushed from their weight (I was constantly freezing), and my mother being here to watch over me, and carrying around my wash basin puke bucket, the first days home from the hospital were quite normal.

I even returned to work. I had to. I needed the distraction. It went slow, I’ll be honest and my bosses all worked with me, knowing my immediate limitations and I can’t be grateful enough for that. I also took naps. I actually planned my days around them. I would carefully lower myself back into my cocoon of Afghans on the couch, set the alarm on my phone and nap for the better part of an hour before going back to work. Of course, lowering myself and getting back up again took up a great deal of my lunch break.

Trying to eat dinner became a chore. I couldn’t eat anything on the dry side. It made me gag. I know I ate more pasta dishes during the first few weeks than I think I’ve eaten my entire life. I was afraid to eat salad, not because a green salad is healthy, but because I couldn’t bear harder food particles going down my throat. And I was force fed water, water, water, water. Everywhere I turned, there was water. Funny story. Ariel was giving me bottled water to drink during the day and I barely drank it. He’d get upset, but it tasted funny, in a bad way, rancid almost. The taste of it made me sick. We tried flavoring it with different juices but only made it sweet repugnance. Afraid I wasn’t hydrating enough, he gave me some from the filtered water faucet and wow, how clean and pure it tasted. So, he got me some sippy cups with screw on lids and had their own straws and I was able to drink my quota each day. The bottled water we figured was a little on the aged side. Crisis averted. AND, I still drink from those cups so I can make sure I measure what I’m supposed to drink. Green one day, orange the next.

For the weekend, my mother went home to take care of her own stuff and she would come back Sunday night. And thank goodness she went home and I was thankful she wasn’t around to witness what went on that Saturday afternoon.

It was a calm sunny day. Ariel and I sat on the patio, armed with my bucket, my water and my coffee and sat in front of the garden. I was feeling somewhat uncomfortable though. It was a sort of pain; not sciatica, and not the back pain which eventually turned out to be cancer–this was an entirely new one, right around my mid-section to the tops of my thighs. I felt as though my bones were breaking and it was non-stop. It had gotten to the point where I could barely walk and at its worst, Ariel was just about carrying me because I could no longer hold myself up as I attempted to get around the patio in hopes of walking it off. Either way, sitting or standing, that bone breaking sensation was full on.

This was the bone pain we knew was coming. Or should I say, Ariel remembered it and I dismissed it, especially at that moment only because the only thing on my mind right then was getting relief and the only thing at my disposal was to try to control my breathing to calm myself and to pray the Hydromorphone tablets (generic Dilaudid) would kick in. Of course it would have been better had I taken them sooner, but this attack came on out of the blue. I’d been taking them at regular 4 hour intervals, but only a fraction of the maximum I was allowed, just enough to stave off any pending discomfort.

I was running low on my Hydromorphone and Ariel tried to get a refill from the drug store and after some finagling, arranged that they would accept a faxed copy of a prescription from the doctor with the promise of handing over the original a few days later after my scheduled appointment with the doctor for my 10-day check up. Plus the folks at the drug store of late were quite well acquainted with me since I’d been living on all sorts of medications over the last month or so.

My regular doctor, Dr. Thomas had originally written that prescription so Ariel called his office. Naturally, being a Saturday, he got the on-call doctor on duty and explained the situation. As I was wincing and clenching the arms of my deck chair and practicing breathing like I was the sole student in a Lamaze class, I could hear a contentious argument transpiring on our end of the phone. Basically, the conversation went something like this: “I don’t know what we’re going to do. I can’t have him be in pain like this. I don’t know what else to do!”. The voice on the other end, I later learned was saying, “I’m sorry, I can’t help you. This is Saturday and we don’t prescribe narcotics on the weekends. You should have thought of this on Friday!”

Oh, drat. I forgot to mention..the on-call doctor that day… Dr. Vera Bitch. And when the time was right, Ariel would report her to Dr. Thomas (and did) but right then he had bigger fish to fry than worry about some ignorant dismissive witch with a medical license. The next thing to do was to call Dr. David’s office in hopes of finding someone there. Making the connection at the oncology office, Ariel once again explained the situation and pretty much before he finished the doctor on call was ready to fax over the prescription to the pharmacy.

I need to mention here, that the bout of bone pain was pretty much on target, timing-wise. It was told to us it would hit me in 7-10 days. Since the Neupogen was administered over a 10-day period, the effects of it were more likely to spike as opposed to the single dose, time-release Neulasta, which I would be receiving after the remaining chemo treatments. It’s beneficial white blood cell building effects would be the same, but hopefully the painful side effects would appear on a more level keel or perhaps even less.

When we saw Dr. David on the following Tuesday for blood work and to get the hard copy of that prescription, we explained what had happened over the weekend and he told us that he was my doctor now, to go through them for anything and everything we needed. This 10-day check up appointment after Chemo would be standard throughout the 18 week period.

I tried to be more vigilant and watch for signs when an attack like this would come on so I could arm myself better against it, but having cancer was all new to me and quite frankly, these episodes could and would strike without a moment’s notice at times and in some very unexpected ways.

One, Two… Jab?

April 22, 2014

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

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

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

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

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

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

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

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

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

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

The cure was underway and I was at its mercy.

green ribbon

Chemotherapy #1. Aftermath!

April 15, 2014

Chemo number one was in the books and Saturday morning began without incident. Today, though, was a new treat. Not only was I going to have my second visitor, Brudder #3 (my cousin Ray and another friend, Diane were my first earlier in the week), it was also the first of the series of my Neupogen shots.

Let me tell you a little secret about Ariel before I begin. Much like I used to be when it came to eye related things, ie. when I couldn’t even see drops being put into someone’s eyes or contact lense commercials or eyes being in jeopardy in a horror flick (well, that’s still gross) thanks to a movie they showed in metal shop when I was in Junior High (that’s right, Junior High, not Middle School…what’s that?…sheesh!) where a shard of metal went flying off a lathe into the operator’s eye and the ensuing processes taken to remove it, well... Ariel can’t see a needle penetrating someone’s skin; not on TV and certainly not in real life. Well, real life was about to shake him up just a wee bit more in sort of the same way a mother can roll a Volkswagen off her baby.

Anita had come to give me my shot and was giving Ariel a visual tutorial on how to do it. I was waiting for him to pass out flat across my aching carcass but he held it together. First make sure no air bubbles are in the syringe. Pinch some skin on the back of his arm, insert the needle and push the plunger. Simple. And I didn’t see any sweat break out on his brow.

I remember Niki stopped in to say hello, but she was working in a different area that Saturday and that would be the last time I’d get to see her… for a few months anyway, but that’s still to come.

#3 arrived and we visited for some time and while he was there, Ariel took a quick jaunt home, again to shower and gather the mail and was back lickety split and then the three of us had lunch and I think I had one of the best sandwiches I’ve ever eaten in my entire life that day. It was a chicken salad BLT. What a day to be alive; my cancer was being eradicated and this sandwich was like manna from Heaven.

And then it hit me. Before I could finish one half of that sandwich, a wave of nausea swept over me like the Devil’s broom. The effects of the Chemo had caught up with me and I was armed with my bucket, the little wash tub from the goodie pack filled with personal essentials that greeted me upon my arrival. It would be my constant companion for the months to come. If there’s one thing I hate is being sick and being sick in front of someone else, regardless that in this instance it was out of my control is even worse. I dealt with the pain as best I could, I suffered being poked and prodded and my pelvic bone being drilled into but the mere thought of vomiting was a greater fear. I’d rather humiliate myself in any other way and I wouldn’t be half as self conscious. It’s a phobia, I’m sure.. That, and spiders, and don’t get me started with that topic!

But a little miracle pill called Zofran would prove to be one of my best friends over the next 18 weeks. Within ten minutes of taking it, the feeling of nausea subsided and sometimes I’d get daring and eat. Other times I’d not want to jinx it and just be satisfied with my tummy feeling more at ease. Of course, the more of those I needed to take “wrist band, please” and the more Dilaudid I had to take for the pain “wrist band, please”, the more constipated I got and the nurses were right there with the Miralax “wrist band, please” and the Colace “wrist band, please” to help keep things moving. Wrist band, please!

18 weeks. Written out it doesn’t seem like a long time. But time began to stand still. Each day sometimes felt like 18 weeks.

This cat and mouse game with the onset of nausea continued for the remainder of my stay and beyond and I was scheduled to be released on Monday, if all the stars aligned and my numbers satisfied all the doctors involved, especially Dr. Mambo, the nephrologist. Dr. David sent a prescription to the drug store for a supply of Neupogen so Ariel could finish that dosage once we were home. Someone, the nurse Anita, no doubt, told Ariel the syringes came pre-filled so all he had to do was pinch and poke so that was one facet to pushing over his Volkswagen he didn’t have to worry about.

I was released on Monday, August 12, which, if you recall, was the proposed date, a lifetime ago, when I originally supposed to have my biopsy done and here I was leaving the hospital, biopsied, swollen and nauseous with one round of chemotherapy (of six) under my belt. Before I left the room, the head oncology unit nurse came to visit me to ask how my stay was. I could not find enough adjectives to tell her that everyone made my stay as pleasant as possible, right down to the guy who swept the floors. And really not wanting to discount anyone, I had to tell her the truth that Niki was by far my favorite nurse. It turns out, this head nurse, whose first name was similar to a current singing pop star told me that Niki was named “Nurse of the Year for the entire hospital” and she was glad I felt that way about her.

As they wheeled me out and I passed some of the nurses and aides in the corridor who had been so caring and kind, I wept from the joy of leaving, remembering the lighter moments like when they made me get up and walk around to get my circulation going and me, trying to keep my hospital gown modestly gathered behind me and Niki blurting out “Did you poop or not?” when I was trying to be discreet about it.. Tears fell also in fear of leaving the comforting safety of the hospital, into the unknown neither Ariel nor I wanted to face. But face it we would…together.

green ribbon

Chemotherapy. Round 1.

April 8, 2014

Friday, August 9 began like every other day in that hospital bed; Ariel on the fold out chair beside me, the TV on with the speakers by my pillow as low as possible, nurses coming in to check my vitals, me struggling into position to try to pee into my bottle so the nurses can monitor what my kidney is doing. The IV had been removed from my left hand since the port went in. Tubes were dangling from it for blood collection and to administer things to keep me hydrated and to help relieve the kidney thing. I got to be a pro at dragging that IV pole around when I had to get up to use the bathroom.

Today was the day. At first there had been a question whether I’d get my first chemotherapy in the hospital during my stay, or would have to come back as an outpatient, but it was all settled. The main thing was, the doctor wanted the first one to take place there, just in case there was a problem, like if I had a bad reaction.

Breakfast came, I’m not sure what it was, but I was enjoying everything I’d ordered since dinner on Monday. I had no restrictions so I was having a field day. I’m sure one or more doctors came in just to check on me. One of them, Dr. P, an associate of Dr. David’s, after seeing my deformed’ness said it was cosmetic and it would return to normal. I seriously had great doubts then and quite frankly it had become the least of my worries.

Before the R-CHOP chemo started, (it’s quite detailed if you click here), one of the nurses who was going to administer it came in with a stack of papers describing what the R-CHOP chemotherapy was, what I could expect as a result–nausea, hair loss, pain from the shots I would get after it. At first I would be getting a 10-day course of shots of Neupogen. It’s to help increase the white blood cells to ward off infection since the chemo kills those off and they have to be replenished. In the meantime they warned to try to stay away from people with colds, large enclosed public areas like a theater or mall and to stay away from babies especially because the little buggers are just incubators for germs. Of course the doctors weren’t as concerned about those things, so who do you listen to? I was to get the Neupogen for 10 days at least for this round of treatment because the Neulasta, a timed released one-time version had not yet been approved by my insurance company, but should be all set by my subsequent treatments.

There is a question of timing how long my first session lasted but given the average length of my remaining ones, which, between prep and the actual treatment, clocked in at around 6 hours, I’d dare say my thoughts are more or less on the money, that it began around 11am and ended somewhere around 8 at night.

My two chemo nurses came in, Anita and the one I would proclaim as my favorite from then on, Niki. I’m not sure what it was about her, but she was my favorite. They explained what they were going to do, in which order they would do them.

The kick off was some pills and a bag of antibiotics. Following that was a bag of Benadryl. Once that was done, two syringes, about 7 or 8 inches long and about an inch around filled with a red solution (which later, I would fondly refer to as cherry juice) would be shot into the port by hand, one at a time and timed at about 5 minutes each, then the last bag would be set on drip and run its course. Later, as I got my subsequent treatments and the nurses saw how I handled it, they bumped up the speed of the drip of that last bag and so I’m thinking since it was my first one in the hospital, the drip was set to very slow and that was why it took so long.

I was by now accustomed to having my wrist band scanned every time I got something, either pain pills so I could sleep or a Colace to help me poop (I was terribly constipated from all the pain meds I needed) but what fascinated me, every time a new drug was given to me during the chemo session, my wrist band was scanned and I was asked to recite my name and my birth date.

It was a long day and I was not the worst for wear for all of that. Not yet!

green ribbon

Ode To The Pin Cushion

April 1, 2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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