Posted by: jility | December 16, 2013

5 F U

“Now, you need to avoid cold.” My nurse said as she hooked up the IV to my newly installed and still aching chest port. She continued in her thick Jamaican accent, “Don’t open the refrigerator or freezer without gloves. Drink through a straw and do not use ice. Make sure everything you drink is room temperature or warm.”

I asked her why.

“Well,” she shrugged her shoulders and cocked her head noncommittally, pursed her lips and reluctantly went on, her Island roots quite obvious in her speech, “Some people feel uncomfortable with cold.”

Being me, I pressed her for more information. “What do you mean by ‘uncomfortable’? How long will it last?”

Again she shrugged and looked like she wanted to run away. She hemmed and hawed but never gave a straight answer. Finally, she said, “Everyone is different.”

I got it. She didn’t want to put ideas in my head or to cloud my thinking about the drugs I was getting  to kill any cancer that may be lurking inside, just waiting for that opportune moment to expand and grow.

I have always thought it was stupid when viruses or other diseases kill their host. That is very short sighted of them. It reminds me of the fable about the frog and the scorpion.

  A scorpion and a frog meet on the bank of a stream and the

scorpion asks the frog to carry him across on its back. The

frog asks, “How do I know you won’t sting me?” The scorpion

says, “Because if I do, I will die too.”

   The frog is satisfied, and they set out, but in midstream,

the scorpion stings the frog. The frog feels the onset of

paralysis and starts to sink, knowing they both will drown,

but has just enough time to gasp “Why?”

                         Replies the scorpion: “It’s my nature…”

Once the IV was firmly in place and covered in the clear tape window, the saline solution began to drip. It always burns when it first enters my body. The nurse explained that I had to lie there and wait for the USC Norris Cancer Center Day Hospital pharmacy to formulate my chemotherapy drugs. I was to receive three different drugs:

  1. Oxaliplatin
  2. Leucovorin
  3. 5-FU (the big gun used for my specific colon cancer)

Each drug is given separately but the 5-FU goes in last and is delivered by a pump I wear in a fanny pack for 46 hours.

Once the first drug, Oxaliplatin, was hooked up to my IV, Sir Cussalot went in search of some food. I was starving!

He was gone a while and returned with a huge score! VEGAN SUSHI and INARI ROLLS!!! YUM!

34200inari

I greedily gobbled both with great gusto and gratitude.

While we were eating our sushi and inari, my nurse came over and place a life sized bust on my table. She wanted to demonstrate how to remove the needle from my port once the pump was finished. This was the part that really made me nervous. Now, as much as I love him, Sir C is more like Lenny from The Grapes of Wrath than a neurosurgeon with a delicate touch. To say he is a bull in a china shop would be an understatement.  He is extremely intelligent and capable of many things. Finesse or patience, however, are not his strong suits.

W46507-1_01_Chester-Chest-With-New-Advanced-Arm

My nurse carefully demonstrated how to remove the needle correctly. There was a butterfly thing you had to squeeze to release the needle, then pull straight back. Sounded easy enough. Sir Cussalot grasped the demo needle and perfectly demonstrated his ability to do the job.

I felt some relief.

That, however, was short lived!

Next she pulled out two ginormous syringes.  She explained in her soft voice that one was filled with saline to flush the port and the other was filled with heparin, a blood thinner to keep clots from forming in the apparatus. THOSE THINGS SCARED ME! I could see Sir C pushing down so hard on the plungers that my vein exploded or the port went flying around the room! YIKES! BEWWY BEWWY SKAWWY!

The volunteer came around asking what the chemo patients would like for lunch. Still not full, I asked her if there was a possibility to find a vegan meal. The well-dressed lderly woman smiled and said, “Sometimes they send over vegan sandwiches. I will check for you.”

I lay in the bed trying to read while listening to the man in the next bed snoring loudly. Sir Cussalot worked on his laptop. Not much time passed when the volunteer returned. With a twinkle in her eye she said, “They sent ONE vegan wrap! I snagged it for you.”

“THANK YOU!” I exclaimed happily surprised!

It was a nice looking hummus wrap in a spinach tortilla. I gave half to Sir C and enjoyed the rest of my meal.

Since my surgery, I am a bottomless pit. However, I have been very good about sticking to oil free, sugar free, whole vegan foods, so my weight has been dropping slowly. Last week I was naughty and ate out a few times and gained about eight pounds. As soon as I go back to eating my McDougall type foods, I lose it right away. I am trying hard to avoid all sugar. My downfall is not sugar so that is not very difficult. My food pitfalls are fat and salt. I love greasy things covered in salt! Those ribbon chips you get at the fair call me in my dreams!

Not long after we finished out second lunch, our friends Greg and Roger walked in carrying a magnificent bouquet of two dozen pink roses! I was so happy to see them! They are two of the nicest and most supportive people I have ever known. I am always happy to see them! I am blessed and honored to call them my friends.

20131213_103847

We talked and laughed and those three hours of chemo passed like lightening. When the final drop entered my IV and the alarm sounded to tell the nurse it was done pumping cancer killing poison into my body, I was SOOOOO ready to go home! The nurse explained that we had to wait for the pharmacist to talk to us. That seemed to take forever!

Finally, he entered my bed area with fanny pack and 5-FU pump in hand. While the nurse attached it to my IV, he explained how it worked and the side effects I might experience.

I heard, “BLAH BLAH BLAH tingling. BLAH BLAH BLAH nausea. BLAH BLAH BLAH antinausea medicine. BLAH BLAH BLAH…”

He explained that people who get car sick or sea sick, usually have a harder time than those who do not. F#@K ME! I suffer from both, especially sea sickness! I told him my seasickness was easily controlled with Meclizine, and asked if I could take that instead of the heavy hitter prescription drug. He said to try it. If it didn’t work I could add the other.

He also said that MOST of the time, the neuropathy I might experience in my hands and feet would go away after treatment stops. However, he went on, sometimes it never goes away.

FREAKING AWESOME! I already have balance issues!

Even though I react poorly to just about every drug known to mankind, I am convinced I am going to do GREAT with this crap!

When the frightening speech was over, he handed me his card and said to call anytime with questions. I got out of bed and the four of us headed out to a vegetarian eatery.

I grabbed my lovely roses and we all walked out of the hospital. Sir C and I, parked in the covered garage so Isabella and Crush wouldn’t overheat, went one way and Greg and Roger the other. We would meet up at the restaurant.

After a few steps outside, I noticed that the hand holding the roses began to tingle. I switched hands. The new holding hand also began to tingle. I kept switching back and forth until we got to the Stinkmobile. I didn’t think much about it.

The first thing I did at the restaurant was take a sip from my ice water. WTF????? Oh yeah, what part of AVOID COLD AND NO ICE WATER DID I NOT UNDERSTAND???? DUMB A$$! My lips tingled, my throat tingled and my tongue began to cramp. My esophagus felt very strange.

I asked for water without ice.

When I took my first bite of food, my salivary glands felt like somebody was sticking needles into them! THEY HURT LIKE HELL!!!!! Once the initial rush of pain passed, I was able to finish my meal painfree.

We finished our food, said our good-byes and headed home.

The dogs were very happy to see us finally return. They wanted us to go play with them and didn’t want to come back inside so we left the door of the Global Warmer open. My chair is very near the door and the warm California day had turned into a chilly California evening. The colder I got, the more my hands tingled. At one point, I could no longer type or hold the computer mouse. My hands were now in spasms and cramping so much they were closed tightly and I couldn’t open them! I felt like a claw plugged lobster! It was very scary. I decided to call USC.

They told me to put on gloves or mittens and go to bed and get warm!

I got up and headed towards the bedroom. Now my legs began to tingle. My lips joined in and began to cramp and spasm. It was the strangest bodily experience I have ever had!

I found my heavy winter gloves, bundled up and climbed into bed with a heating pad. It took a while, but pretty soon, the spasms stopped and finally the tingling also went away.

Once warm, I began to experience the opposite. Now I was having hot flashing wherever I was warm. It seems the Oxaliplatin demands a constant body temperature of 98.6 or it would really let you know about it!

NOW I got what my Jamaican nurse actually meant by “uncomfortable!” MISERABLE!!!

Every so often I would yell out to Sir Cussalot another weird side effect I was feeling. He is so sick of this whole process. Even though he is trying harder than I have ever seen him try, sometimes he just can’t help himself. After about the billionth new side effect discovery I yelled out, he said, “I don’t know why you are so surprised! They told you a bunch of weird shit was going to happen!” Clearly I needed to keep my experiences to myself for a while. He was on overload.

Every sense and every sensation was heightened to an “uncomfortable” degree. Blessed (or cursed as is sometimes the case) with a super sense of smell, that too was heightened even beyond my normal doglike smeller! I could enter myself in a nosework 3 trial and win!

So far no nausea, so that was a big fat plus!

I felt like I was getting the flu. I had no energy and only wanted to lie in bed and watch HGTV. Poor Sir Cussalot was on his own, AGAIN. I feel so bad about the fact that he has to do everything around here. I wish I could do something for him. Unfortunately, spending money on him would make him sad. The only thing that would make him happy at this point would be to win the lottery. FAT CHANCE OF THAT HAPPENING!

Sir C wanted me to get out of bed, so he offered to take me for a drive by a place for sale. I felt like SH!T but I dragged myself out of bed, pulled on my pants and put a sweatshirt over my head. I didn’t even remove my nightgown. I just pulled it up out of sight and tucked it under my sweatshirt. I looked lovely with my hair a mess, my 5-FU pump sticking out in front of my belly, my sticky hospital socks on my feet in my sandals and my nightshirt hanging down in the back. I am shocked Sir C didn’t want to jump my bones right then and there! I was dripping in cancer/chemo CHIC!

I did still have my lovely painted nails and toes. I am sure that made up for all the rest.

As soon as we returned, I climbed back in bed and fell asleep.

The next day was pump removal day. I dreaded it! I felt a little queasy, so I took a couple of Meclizine tablets. They helped.

I made myself get out of bed and sit at my computer. About 10:30 the pump began to beep at me. Sir C came over to my chair with his syringes. I heard horror music in my head as he approached.

He disconnected my 5-FU, alcoholed the end of the thingy where he would put the syringes and attached the saline to the thingy. He began by pushing much too fast! I knew that would be a problem. I started yelling, “SLOW DOWN!!!SLOW DOWN!!!” I had to repeat myself about four or five times before I got him down to a speed that made me comfortable. He does everything fast ;).

That finished, he then alcoholed the thingy again and attached the heparin. His speed was good and he finished the process to my great relief and no screaming to slow down.

Next he had to remove the needle. We removed the tape. I carefully removed the clear sticky window that held the needle in place. Not that I didn’t trust him to do it or anything ;).

We saw the butterfly tabs he was supposed to press together but they were yellow instead of red and looked very different than the model she showed us in the hospital! He pressed the wing tabs together but nothing happened! They were supposed to flare but they didn’t. Obviously, it was a different apparatus than the one on which he practiced! YIKES! F#@K ME!!! Now I was very scared. He pressed and pulled and pressed and pulled but the needle wouldn’t budge! IT HURT and I was beginning to panic!!!! I had visions of blood spurting all over the place like that old Saturday Night Live skit with Dan Aykroyd as Julia Childs! http://screen.yahoo.com/french-chef-000000398.html

I told him I wanted to go to the ER or the Urgent Care down the street. He kept fumbling with it. I continued to protest and was about to head out to have a pro remove it when he said, “I think I’ve got it.” Before I could tell him to stop yet one more time, he pressed his fingers on the tabs that were against my chest and pulled out the needle.

My relief was beyond words. He went from zero to hero. I hugged him and thanked him. He grinned.

Still feeling like I had the flu, I crawled back in bed and bundled up to more HGTV.

The next day was an early one. We were supposed to go to Stacy’s, a forty-five minute drive, for a four and a half hour seminar, beginning at 9 AM. I dragged  myself out of bed and headed to the shower. After which I had to lie down to rest. How pathetic I have become! There was a time when I could work dogs all day in a week long seminar without even a hiccup or heavy breathing! Now I can’t even take a shower without being exhausted! I HATE CANCER! IT SUCKS!

The seminar was awesome and I made it through the whole thing without too much trouble! Even though it was almost 80 degrees, I sat in the shade and wore heavy gloves and a coat. It was so great to see Stacy and her students again. They are such a fabulous group!

The tingling was not quite as bad, but still there if I got cold. The worst thing, though, is taking that first bit of food and having my salivary glands hurt like a YOU KNOW WHAT when they first go to work!

The seminar was terrific! Stacy made some fabulous vegan soup and carrot bread she sent home with us. She is so thoughtful!

When we got home, Sir C’s AMAZING daughter, Les, sent me a text saying she had made her dad’s favorite meal and it was all in our fridge. INCREDIBLE! He didn’t have to cook! She made mashed potatoes, gravy and tofu loaf. For desert she made a fabulous blood orange carrot cake with icing! Sir Cussalot LOVES sweets so he will have something nice to eat for several days. We were both SOOOO appreciative of Stacy and Les. Normally, I do all the cooking. Unfortunately, Sir C has had to take over for the past month and a half. There have been a few days I felt well enough to cook, but those days are rare. Dinner was amazing.

Today, Monday, was the first day since Thursday’s chemo and my 5 FU disconnect on Saturday that I felt like getting up and doing something. I feel pretty dang good today too. It has been a week since the port was installed. It still aches just a bit occasionally, but not bad at all. My next chemo is the Monday after Christmas, so I have two weeks to enjoy the simple things I one took for granted. For one, I can now sleep on my right side because the pain from my port is almost gone! Little victories!

As my brother recently told me, I need to stop whining and take it like a trooper. So true.

5 F U Cancer!


Responses

  1. Thinking of you and wishing more good days than downers. Merry Christmas to you and those you love!

  2. I wish I had some long awaited wise words to help you through this awful thing, but I don’t. Take care and hang in there. My best to Sir C. Maybe he might enjoy the Cooking channel…but then….

  3. Helen, your treatment sounds just like what my brother-in-law had to treat his abdominal cancer – the port, sensitivity to cold, the 46-hour pump, etc. He managed it all very well despite the uncomfortable days and has subsequently had 3 CLEAR scans! Yay! And that’s what you’re going to do. Your sense of humor is so great, and so are you! Hang in there!
    BTW, I got him some hand warmers from L.L.Bean and they were helpful.

  4. I found that the prescription anti-nausea pills were worthless. If you find yourself nauseous, consider eating some candied ginger or drink some ginger ale or eat ginger snaps. The candied ginger worked best for me.

    I laughed when you wrote about Sir C and the needles. I had to have B12 shots and my husband was going to give them to me. He took that first syringe and drew way back and stabbed. Pulled it out and tried that again! I had huge bruises before I got that shot. From then on … I gave myself those shots!!! 🙂 (However, if your port is where mine is, doing some of those tasks yourself might be a little difficult…)

    Keep hanging in there!!!

  5. Helen, I read these posts and I am amazed at how well you are doing facing this, I know it isn’t easy, keeping a sense of humor will hopefully help you through this; sending good thoughts from your Nebraska friends.

  6. Yeah, 5 F U, cancer ! ! ! My sister’s gonna kick your A $ $ !

  7. High 5 to you and FU to cancer! I have a Dutch friend who wrote a blog about her cancer recovery. She said the ultimate indignity was loosing her eyelashes & eyebrows . She wrote in Dutch so I used Microsoft Translator to learn that eyelashes & eyebrows are wimpers en wenkbrauwen. She has gotten her wimpers en wenkbrauwen back now.

  8. I think a lot about you. You’re in my thoughts, and I hope you recover soon.

    • Thank you Fanny.

  9. Fuck! Hang in there. Wish I lived closer to give you a hand.

    Sent from my iPad

    >

  10. You’re doin’ good Helen! Hang in there 🙂 I used to have to do all the syringes and stuff for Ross when he had MRSA and was taking all the drugs with the port. It was brutal – finally he started doing it himself and it was much easier for me to just hold the lines and pass him all the things he needed. We worked like a well oiled team! Remember if you need anything just ask – I can deliver food too 🙂

  11. Personally, I think you are taking it like a trooper! Your path right now is not an easy path to travel and you are doing it with honesty, humor and your usual take the bull by the balls and carry on attitude! I applaud you!


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