Update 66

March 2 – A couple of observations from my last chemo treatment that I forgot to mention.  Remember the woman who looks so much older than she is? She now looks like she is about a hundred years old and very weak!  I am really afraid she is going to die during a treatment!  They could hardly get her to wake up and when she did she was not very coherent.  It is very sobering and a huge reminder about how devastating this disease can be, then you can’t help but wonder if that will ever happen to you!  She is being treated for breast cancer, same as me.  Another woman was there after a ten year remission from her original breast cancer. Hers showed up as a rash under her arm that she thought was scar tissue forming. Ten years!  My oncologist uses that marker instead of the more common five year time frame.  Ten years is a bit daunting when you think about it and then it is not a guarantee that there will be no recurrence.  I am a bit down today as you can tell since I only made it to two years myself.  I know I am getting the most aggressive treatment and that my prognosis is excellent but……………………..it was the first time, too, and here I am again.  This is not a plea for sympathy, this is stating how a cancer patient feels.  The uncertainty is sometimes quite overwhelming.  I saw this quote on a calendar page, no source was given, and it reads “Worrying does not empty tomorrow of its troubles – It empties today of its strength.”  I must keep this out in front of me all day long!

Leg and Foot Cramps Lucinda Faye came to visit at 4:32 a.m. this morning!  I knew she wouldn’t be far behind Constipation Cora!  I laid in bed for awhile hoping the jumpiness would subside but it only kept increasing so I finally just went ahead and got up.  It feels like someone is sending mild electric jolts into my calf muscles at the beginning and as it progresses it feels as thought the voltage is being turned up.  If I don’t get up and walk around it will escalate into full blown cramps that will bring me to tears so at least I get a warning!  I have learned to heed that warning, too!  Sometimes they continue on, no matter what I do but not as often as before I was eating more potassium, taking the magnesium and Tums and drinking a ton of liquid.  In Vegas I had two nights that I had to take the quinine pills so I could sleep.  It will be nice when I can bid farewell to this duo, they are very unwelcome guests!

On to a more cheerful subject.  It was wig bonanza yesterday as all of the new ones came in the mail!  Three immediately have to go back.  Way too much hair for me.  They need someone taller with a bigger head to look good!  I am keeping a frosted one just like Fiery Fiona and am debating on a brown one like Fiona but am afraid it is too boring!  I expected it to be auburn with red tips and it is pretty much just brown. Not sure I want Boring Brown Betty to join the group.   I have sixty days to decide so will try it again.  Yesterday is my “red face” day so not really a good day to be trying on wigs.  Bright red skin does not really go with much!  The three that are going back would not look good on me on my best day, though!  Since I ONLY have FIVE more treatments to go I will cut off my wig time by about a month so maybe by August I will have enough hair to go without a wig.  Last time it was about five months but then I had no hair at all.  This time I have some hair and it is at least growing a little.  I will be glad to get my eyelashes and eyebrows back! My eyes get dry and irritated easily since there are no lashes to filter out the junk in the air.

My patio extension is almost done.  I laid in the last brick paver last night and now Harold must take a break from the roof and cut me some edgers.  Did I mention before that these pavers are no longer available so Harold has to cut down the full-sized pavers I have to make edge pavers for me.  These pavers are about two inches thick so it is quite a job to cut a straight line on them but he can do it.  What a mess it makes though.  Dust is everywhere!  I have to hose off all the plants, the windows, the furniture, everything that is within thirty feet of the saw blade!  Still have to finish laying the big red pavers that will form a walk but that won’t take long.  I will take a bit of a break from my construction duties and begin some spring yard work.  It is so nice to be outside this time of year here in Florida.  July and August – not so much!

March 5 – Well, Weepy Wanda was here visiting for hours last night!  I am not exactly sure why as I had a great day!  I got to paint raspberries with my friends (well, they painted raspberries, mine look a bit more like Ranier cherries!) and that was fun.  Our neighbors were having a yard sale and I got a good deal on a big drafting/drawing table which is now out in the studio under the skylights with a copy of one of my drawings taped on the surface and my T-square in place! Props for the studio!  I really enjoyed my day but in the evening I was entering the final dates for my chemo in my date book and all of a sudden I started to cry! What happened here????? Because they were the final dates?  Because I had to do it in the first place?  Because it has been a long haul and I still have radiation to go through?  Because even though chemo is done I have until November to do the Herceptin?  Because I found out a friend is not doing so well with her cancer and treatment?  Because another friend got a questionable test report but a clear PET scan?  Because my sister told me about a friend’s son who finished up his chemo in January after about a year of treatment during which he still went to college and now, here in March, the cancer is back? Because I am afraid of the radiation? Because I am afraid of lasting side effects from radiation? Because I am afraid of what lasting effects I will have from this chemo journey – I got diabetes as a result of the last time I had chemo. I am nearing the end of actively fighting this recurrence with chemo and that in itself is scary.  I want chemo to be over but then you are not in a battle and you still don’t know who the winner will be.  Like anyone, I fear the unknown and radiation is an unknown to me and when that is over I have until November with the Herceptin and then only check-ups.
 
Lest anyone think I am sitting around wallowing in pity, I am not, but these things come in and out of my mind and are my reality.  I actually came across a calendar page from Mary Engelbreit that shows a girl in a big chair surrounded but lots of “good stuff” and the title is “Princess of Quite-a-Lot.”  I feel that way, too, a long with the preceding paragraph.  So, Thankful Thelma writes the following:

• We are building me a new studio and that has been a dream for my whole life! 
• I am building my new garden with my own two hands and it will be more beautiful than I ever thought it would be
• I live in a house that is better than anything I ever dreamed of when I was growing up.
• I have a loving family after growing up in a very dysfunctional family
• I have actually lived in Bermuda and in Italy, taught art in Sweden and Norway, places I never even ever dreamed of going
• I am able to work at what I love to do and actually make a living doing it
• I have such wonderful friends all over the world and keep meeting more wonderful people so have so many in my life and a  lot have come from my cancer experiences
• I am so much more in tune with my life after having experienced cancer twice and actually enjoy each day more that I did “bc” (before cancer)
• Through my great webmaster, Marian Jackson (www.paintwebs.com) I am able to share my experiences with the whole world and maybe help some other woman through her journey

Some of these things I had before I had cancer but I appreciate them so much more now.  Not a bad list, is it?  So, I may be fighting cancer for the second time and I may have to fight cancer again in my lifetime, but oh, what a great life it is!

March 7 – Finished #2 chemo treatment of Round 5 today.  This was the first time they had trouble getting blood drawn out of the port.  She had to rotate the vial and needle around on the third try before it worked.  I was getting Herceptin already and the drip was going in just fine, she just couldn’t get anything to come out!  She said if the needle was too close to the side of the vein it was hard to draw out the blood so by rotating the needle it gave her access finally.  Do not like to even think of anyone rotating anything in my veins!

Then I forgot (FORGOT!!!!!) to bring along the Amaryl that I am to take to help with controlling my blood sugar after receiving the Decadron.  Lordy, chemo brain is finally settling in I am afraid.  Well it was too late by the time I remembered (I was almost there!) and I had packed a basically no-carb lunch so I just went on ahead.  I figured this was a good time to see if I could control it without the drugs!  I got a Burning Aranesp shot again, counts were down to 11 and I have even felt just a bit tired this past week so even though I HATE the shot I was glad to get it today.  Of course I came home and had to go to sleep for the whole afternoon from the Benedryl in the pre-meds!  Scared Harold because I sleep so still and he can’t see me breathing he kept on waking me up to see if I was okay!  I assured him that I slept that was because it was drug induced but that, truly, I was just asleep!  We went out to dinner and I got a steak and salad (again, basically no-carbs, although I did steal a bite of Harold’s hot buttery yeast roll!) and for the whole day I was within the limits set by my endocrinologist – without the drugs!  The Amaryl makes me very hungry in the afternoon so I have to battle that problem and I was not hungry (of course, I WAS asleep) so that was not a problem today.  I wasn’t even very hungry when I woke up so I may try this again next week.  I am really tired of taking drugs to work against other drugs.

I wore one of my new wigs today.  She is frosted and the same style as Fiery Fiona but I am having trouble naming her.  Nurse Martha, her daughter Heather and my daughter Jennifer came over on Sunday for lunch and I had picked out a name for her and they all vetoed it!  They all agreed that it sounded like a two-bit hooker’s name!  Well………….THAT was certainly not the desired image I had in mind!  So I am on a hunt for a name for her and her sister wig who is again the same style but various shades of brown. I am leaving to teach this coming weekend and am going to enlist the group in helping me name these new “girls.”  If we are not successful I may have to enlist the aid of all of you!  I can’t believe I have run out of names! The nurses loved the new wig and event he young guy taking our reservation at the restaurant commented that he really liked my hair! I wanted to ask him what kind of name that invoked but figured he would think I was, well, a bit crazy, so I didn’t ask!

I have a funny story for you.  Well, I thought it was funny, not sure Harold saw it that way!  I had wet the two new “girls” and added styling gel to them and they were hanging from a pants hanger upside down from the shower in our bathroom.  He came to bed late and turned on the light and he said they practically scared him to death as he thought someone was standing in the shower!  I laughed like crazy when he told me and he just gave me a “look!”

I am sure most everyone has heard by now that Dana Reeve, wife of the late Christopher Reeve has died from lung cancer.  She was not even a smoker and had cared for him for so long after his accident.  She was only forty-five. She announced last August that she was battling lung cancer and has now died from it only barely eight months later.  So very sobering.  The news said that more people died from lung cancer than from breast, prostate and I think colon cancer combined!  They said there has been an increase in non-smokers due to second hand smoke and radon inhalation.  I have been avoiding second hand smoke as much as possible and now will be even more vigilant.  My own mother died of complications from lung cancer but since I have never smoked I was not overly concerned about that one.  I am now.

March 16 – Been a while since I posted.  Lots going on here. Just finished #3 of Round 5!!!!!!!!!!!!!!  Three more chemo treatments to go!  Good thing since my feet are now beginning to be numb, hasn’t gone to my hands yet and I hope I can hang on for two more weeks because I teach my last seminars until August and I need my hands to work!  Last week, two days after treatment I was up all night with the dratted leg and foot cramps!  Even tried sleeping in the recliner but it was a no go.  If I started to doze I would get woken right up and have to leap off the recliner and when it is all stretched out with blankets that is not such an easy thing to accomplish!  They started in the afternoon so I knew something was up. The attack lasted until the afternoon of the third day and then began to subside.  I am upping my liquid intake, eating a banana every day and getting in extra potassium for the next three days in hopes of getting a handle on it this time.  I expect they will worsen over the last three treatments as I am now getting a residual build-up of all those nasty chemicals in my poor body.  Next week is just Herceptin. The nurse told me to try Tylenol for the pain that Leg and Foot Cramps Lucinda Faye delivers so I slept with the open bottle next to the bed last night. 

Now for a biggie! I got the dreaded Burning Aranesp shot yesterday – in my tummy!!!!!!!!!!!!  A friend of mine told me she had to give those shots to herself at home and always used her tummy.  I thought she was crazy to tell the truth. Well, yesterday the nurse asked me where I wanted it and I asked what my options were as no one had asked me that before.  She said some people preferred the tummy because there were less nerves there than in the back of your arm.  It hurts like $#%^&&%^& in my arm so I figured I would give the tummy a try.  Unzipped my pants about half way and pushed my undies down a bit (thank heavens I didn’t wear any of the really comfy ones with holes in them!) needed to get about three inches down from my waist.  She pinched some fatty tissue together (plenty of that available!) and in it went.  Still burned but I must say only about half as much as the arm!!!!!!!!!!!!!!!!!!!!!!!!!  I had my eyes tightly closed the whole time so I cannot give a more detailed description – couldn’t watch that!

Just got back from teaching the beginning of this week to a great group in a great location.  It is a small private group and they really love to learn and I adore that!  I also get to stay in a condo right on the Atlantic Ocean for the time I am there so that makes it doubly fun! It is on the third floor so the view is spectacular!  Jen loves the beach so she took vacation days and we went over two days early to enjoy the setting.  I will be going again next March so she is putting in for vacation then, too!  Harold was busy finishing the roof (we got our final inspection on the roof and on the window buck!) and he left for the races in Sebring on Tuesday afternoon and Jen and I got home Tuesday night. This is the only time I was resentful about my treatment as I had planned on staying a day after the seminars were over to relax but my oncologist said I had to come back to get my treatment since I missed the Vegas week and waiting until Thursday was too close to the next treatment.  So we packed up the car and headed home after class.  Not a big resentment but still………………..

Photo of the week - This is getting to be a book again and no one is here to photograph the new wigs (still need a name for the brown one and maybe for the frosted one, photos next week for sure!) so you get a photo of my new drafting table and sky lights!  I will really appreciate my new studio as right now I am unpacking form my last teaching trip, repacking for he next trip, getting submissions in for Vegas 2007 and getting seminar choices out to the other places I will be teaching this year.  And, I am taking a class myself on Sunday!  This would be a piece of cake in the new studio, as it is, I am tripping over stuff! Soon though ……………….Click on the image for a larger view.

Take care of yourselves!  Get those mammograms and other cancer screening tests NOW!

Love, 

Margot,   a.k.a Perky Polly – Keeper of the Perky Twins, Leg and Foot Cramp Lucinda Faye, Constipation Cora, Thankful Thelma and Weepy Wanda

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