A recipe for living with cancer.

Archive for September, 2012

Lost My Whistle

I went to call Sophie from upstairs and used the kissing sound and “come girl.”  I never got to the “come girl” part because I couldn’t make the kissing sound.  How odd that I pursed my lips and couldn’t get the sound out, then out of curiosity I tried to whistle and I couldn’t.  What the heck?  Why in the world can’t I whistle any more.

The only answer I can come up with is I suffer from dry mouth with these drugs but never thought much about it until today.  Dry mouth is an odd feeling of no saliva flowing in your mouth causing one to drink and drink and drink and still feel like there is no liquid.  It is a problem which can cause tooth decay and mouth sores, but with a virgorous mouth cleansing routine multiple times a day I’ve been pretty good.  There is dry mouth toothpaste, mouthwash, gum and spray all of which I have on hand and use multiple times a day.  Dry mouth is annoying but I didn’t think it caused any other problems until I realized I’d lost my whistle.

I can still do that ear splitting loud whistle by putting my fingers in my mouth and curling my tongue back but I can’t whistle while I work, or whistle a happy tune or whistle a cat call if I happen to seen a really attractive gentleman.  OK the last one is silly, but when Tom gets dressed up and looks really good I often do a cat call whistle for him!

There was a guy in Key West Linda introduced us to a few years ago, Whistling Tom, who whistles classical music, pop tunes, he even has a CD, now if he lost his whistle it would be serious, but what difference does it make if I’ve lost my whistle?  It doesn’t it just adds insult to injury. I’ve lost my hair, eyebrows, eyelashes, I’ve lost my ability to taste, I’ve lost my joy of eating, I’ve lost my health, I’ve lost normal looking fingernails (and may lose the nails), I’ve lost my stamina, I will lose my breasts and now I’ve lost my whistle.

When all is said and done and I get everything back I will happily once again whistle.

 

Scratch my Itch.

Itching is one of the most insidious ailments an individual can have at any time.  A mosquito bite -one small tiny spot- can send us into traumatic contortions trying to scratch or better yet, not to scratch a spot the size of a pea.  We all know what happens once you start scratching you cannot stop, you itch more, you scratch more, a never ending vicious cycle some of us feel will only be stopped once blood is drawn.  My nephew just does not start scratching thereby not even starting the cycle and getting past the itch much faster. I wish I had such self control.

This chemo treatment has given new meaning to the words itch and scratch. Starting out with a rash on the back of both hands, I have been trying desperately not to scratch.  Did you know you can scratch in your sleep?  Apparently I did causing a red raw patch on the back of one hand.  Tom scared the crap out of me when he saw the patch and admonished me and mentioned scratching like that is a guaranteed trip to the hospital for cellulitis.  Whoa, trip to hospital no thanks, cellulitis please no, so began my inner mantra to try and control the scratch itch cycle. Don’t scratch, don’t scratch, it doesn’t itch, it feels fine.  The h-ll it does!!!

I lost control and found myself one night scratching parts of my body where I didn’t realize I itched.  The more I scratched, the more I itched and there I was caught in the cycle with no way out.  In desperation I jumped into the shower and turned the water on as hot as possible.  As the hot water hit each itchy spot the pain was almost unbearable, yet at the same time it was as if I were scratching the itch without actually touching the spot.  I couldn’t figure this out but did not care, it gave me momentary relief and after I got out of the shower relief for a few hours.

I keep putting off calling the oncologists office because I keep thinking it is getting better, yet it seems to be getting worse.  I take benedryl every day but it doesn’t seem to do the trick, so tomorrow I will call and find out what else I can do.  Actually my bigger concern is this is a huge allergic reaction to the Taxotere and it will somehow knock me off track for my last three infusions.  The end is in sight don’t stop me now.

I did not know how to compare this itch /scratch issue to anything else I’ve ever experienced until tonight when I was talking with Mimi at break fast.  When I told her how the hot water hurt terribly but somehow relieved it she said, sure I know exactly what you are talking about.

She reminded me of what happens in the cold, when you’ve been outside and whatever you are wearing doesn’t keep your thighs and butt warm enough.  You come inside and as your freezing skins meets the warmth of the house you begin to tingle and ITCH, uncontrollably.  Then to warm up you take either a warm shower or bath.  You hit the water and the pain is unbearable for a minute or two and then the whole thing calms down, you stop itching and you start to warm up.  I am sure there is a perfectly logical physiological reaction/reason for this but for the moment, this is what I feel like without the numbing cold portion.

I hope this stops, I hope this doesn’t interfere with my therapy and most of all I hope never to itch like this, ever again.

Chemo Kicked MY Butt this Week!

This week chemo kicked my butt.  The Taxotere side effects were different and a bit alarming but today I feel a bit better. The first couple days were nothing unusual but day three and I thought the earth had fallen out beneath me the fatigue was so bad.  The really awful part was lying down was painful, joints, muscles, bones, even my head and scalp hurt. It was once again in waves much like the Neulasta pain, but it didn’t ease up and I couldn’t sit up for long and laying down was no picnic either.

Then the itching started, first on my arms and I ignored it, at this time of year with the transition from air conditioning to heat my skin usually reacts and gets a little itchy, this was different.  The itching moved to my hands and other places and I have not been able to stop scratching no matter how I try.  This is one of the side effects women talk about and I am hoping it will ease up with time.  I had tucked away in the corner of my brain, “this won’t be so bad” everyone said so, my PCP the nurses, “this is not as toxic as the first batch.”  Bad is relative and maybe this is a tactic to ease you into the next series of infusions with as much calm as possible, I’m not sure. I am sure that I’ve scratched one small section of my hand raw and am trying not to do the same to the other hand.  I still have neuropathy, weight gain, and more fatigue to look forward to, I can do this.

Cancer, My Ghee is going to KICK YOUR BUTT!

9 Weeks and Counting

I just had my 5th infusion, first of the new drug Taxotere. Three left and when this all started I never thought I’d get here, 8 treatments might well have been 100 it was so daunting, and now I am down to three. Then Tom put it in a different perspective 9 weeks left for those three infusions, I can deal with 9 weeks. There is still surgery, recovery and a year of Herceptin infusions, but it’s an antibody so it will not be anything like these current toxic chemicals but I can do that.

Yesterday’s infusion was interesting in terms of the ancillary drugs given with chemo, last chemo three additional drugs, this time two, a steroid and Benedril. I was supposed to take Two doses of the steroid the day before the infusion but oops we forgot. So they gave me a larger steroid dose in the IV as well as 50 mg of Benedril. Both these drugs are used to avoid any allergic reactions to the Taxotere. When the Nurse told us the dose of drugs Tom was taken aback, that’s a big dose for her, she’s little…isn’t that great he thinks I am little! My BMI is in the overweight leaning toward obese numbers, and I really need to lose 25 lbs, but he thinks I am little! I love him!

Tom was 100% correct, the Benedril hit quick giving me restless leg syndrome, my legs bumping and jerking and making me want to jump up and move around, lasting about 30 minutes. I then felt wide awake and a little jumpy, the steroid, lasting for about an hour and a half. Ellen switched with Tom to keep me company and we chatted and took my mind off of it.

We started chatting with the woman seated across from us about Taxotere and she began regaling me with a litany of side effects that were overwhelming. Ellen tried to bring the chat back to us but the woman seemed compelled to tell me every last detail including showing me a swollen ankle that was most disturbing. On our drive home Ellen said –how do you tell someone like that to shut up gently. I just remind myself that everyone is different everyone’s side effects are different and I am me and handle things differently than everyone else.

We came home and Miriam was there making me tuna fish, which is what I wanted without even telling her and I was still flying on the steroids. An hour later I crashed and the Benedril reared it’s head and I slept for three solid hours. Then the steroid kicked back in and I stayed up ALL NIGHT! But it’s only 9 weeks left I can handle this!

Taxotere

The next drug I am taking is Taxotere so I went back and looked at the information sheet they gave me in the office.  I am a bit nervous but everyone I talk to says this one is so much easier than the first two drugs which are “really bad”  in comparison.  The list of side effects (listed below) are pretty much the same except for the last five…those are new.  So think good thoughts for me not to have those last five.  I’ll let you know!

Here are some of the interesting points about this drug….

Docetaxel injection is used alone or in combination with other medications to treat certain types of breast, lung, prostate, stomach, and head and neck cancers. Docetaxel injection is in a class of medications called taxanes. It works by stopping the growth and spread of cancer cells.

And as to side effects:

  • nausea
  • vomiting
  • diarrhea
  • constipation
  • changes in taste
  • extreme tiredness
  • muscle, joint, or bone pain
  • hair loss
  • nail changes
  • increased eye tearing
  • sores in the mouth and throat
  • redness, dryness, or swelling at the site where the medication was injected  or
    • blistering skin
    • numbness, tingling, or burning sensation in the hands or feet
    • weakness in the hands and feet
    • unusual bleeding or bruising
    • nosebleeds

    Let the fun begin.

The First Annual Mini Pour, and then there is Strep!

I totally overdid the last two weeks.  In some insane competitive portion of my being I did not like being a slug, all these women who work through chemo, take care of their children and then there is me.  I have nothing to do but sit back and exist through this chemo and there was this little voice inside my head that kept niggling at me: you have no one to take care of but yourself, you don’t work, you should be able to do more, others do more, come on, get up, move, accomplish something –so I did.  Two days after the infusion I was making Tom dinner, he was shocked, straightening the house, baking cupcakes.  I did this for four days and was tired and felt lousy, but I thought: all those women who work through the day, get home and take care of home, then collapse I can do this too.
I stayed at home for a few days while my counts were low, but not for five days like before.  I went out to lunch, I shopped, I did stuff and  I went to bed exhausted but feeling rather satisfied I was able to feel human again in some form.  The kids marveled, Tom was thrilled to have hot meals when he came home from work, all in all not to shabby.  Then came the days when I started to feel better, a bit more energy and that was when I made my big mistake, I decided to have a party.  Yeah, pretty dumb but I wanted to be normal.  Tom was against it, Miriam had to work the day before and day of the party so she couldn’t help as much as usual but I was determined.  I promised I would have people help, bring food, any food that needed to be cooked would be cooked that night by folks attending and everyone would help pitch in to clean up.

The issue was this was not an ordinary party where you decide what to have for dinner buy it make it, serve it and clean up, no this was different.  You see there is a fund-raising event here in Pittsburgh called the Steel City Big Pour-beer tasting, food tasting.  I’ve been twice and its loads of fun and this year I wanted to go with Sam and Cory.  The tickets are almost impossible to get but I REALLY wanted to go, it was the weekend I would feel great and it’s basically a beer tasting of about 15 different brewers locals and international, and food from about 15 local restaurants.  Each beer vendor brings an assortment and you can taste them all.  To get tickets you must get on-line on a specific day and time and hope to get into the queue fast enough to purchase tickets.   I set my phone alarm and was sitting at the computer 10 minutes before start time with the window open ready to go.  I kept clicking in and finally at 12:01 PM got in and was immediately told I was in the queue and would be helped as soon as I was next in line.  After 20 minutes in the queue I was not to hopeful, and at 44 minutes a message popped up saying “sorry we are all sold out”–what a RIPOFF.  Truth be told there are only 500 tickets total so it is really hard to get one and I guess this queue thing is most fair.

I texted Cory and told him what happened and how pissed off I was and he said…for $75 per person WE SHOULD JUST DO OUR OWN. Right I said, we’ll do a MINI POUR and it will be much better.  The rest is history…a mini pour at my house, with 7 or more kinds of beer and all kinds of food in appetizer portions.  Can you see where it totally went out of control?

We had our mini pour Saturday night, it was only seven people so I didn’t get totally crazy and invite 30, but with all the food we had we could have fed thirty!!  I planned, I shopped, I planned, I asked folks to bring beer and food and told them they would be helping cook, Sam was in charge of getting a beer assortment and Ellen offered to come help the day of and Miriam and Sam and the kids would stay overnight so they would clean up and help put stuff away the next day. See I can delegate…ha!

I did not vacuum, I did not go crazy cleaning, I merely straightened up and Ellen helped me with tables, ice chests etc…but it was the food that did me in, shopping, planning, prepping, and I did some cooking.  I went through the list of restaurants supplying tastings and began to develop my “better” list of goodies to go with the beer.  As this post is getting way to long I will just tell you what I had:  antipasto (thank you Ellen), salsa (thank you Judy), cauliflower ceviche on tostada (thank you Cory), homemade sauerkraut, homemade lacto-fermented pickles, fig crostini, chicken ban mi, fish tacos, two kinds of wings, rack of lamb, dry aged steak, homemade chocolate ice cream with baby fingers and cupcakes.  And here is a picture of most of the beers:

I had a blast, I stayed up way longer than usual — I ATE MEAT and it tasted really really good and I paid the price (not on the eating meat part although it was lovely and worth every bite, I am back to being more of a vegetarian than vegan) the next day.  I woke up Sunday morning with a sore throat and swollen glands, went to the Doc and I have Strep.  But you know what, it was worth it.  Family, good friends, good food, good time, what more can one ask for just on any regular day, let alone a day when you have cancer!

This was our first annual Mini Pour.  Next years will be bigger and better.

Thank you friends and thank you family for allowing me to feel normal again, I love you all very much.

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