Update 74

by Margot Clark,
© copyright 2006 Margot A. Clark, Inc , all rights reserved.
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July 1 – A day off!  I don’t know how to act when I don’t have to leave and get a treatment!  I love it!

I just had to include the following – it comes from a friend who reads the journals and it is priceless.  See what she says about my “Jowel Jewels” idea.  “I think the best adaptation of jowel jewels would be if you could use them to pull UP your jowels and attach them to your earlobes!!  It would create a lifted, SMILING look and let you have hip body piercings at the same time!”  Is that a riot!!!!!!!!!!!!!!!!!!! Got me laughing, it did!  Jennifer also added that they could be found in the Jowelry section of stores!

Another friend sent photos of women with those neck rings that stretch the neck but I fear my jowls would eventually fall down over the sides of the neck rings and I would still need the Jowel Jewels!

July 5 – Week 7, Day 2, 30 treatments to date.  Quiet day for us yesterday for the Fourth of July.  Jen came over for dinner (I remembered how to hard boil eggs t his time, no problem!) and then went off to see fireworks with friends.  After dinner Harold (who worked on the soffits of the addition all day – still no electrician hired!) sat outside and watched the neighborhood fireworks.  I was too sore and was dressed in my weird off-shoulder creation so chose to stay inside and crochet.  I was making this darling ensemble for my massage therapist who is having a baby in November and just found out she is having twins!  Yikes.  Now I have to double up on everything!

Had out-of-town company on Sunday and Monday, friends for a long time and easy company so I was able to just have fun with them.  She is also a breast cancer survivor and brought me a beautiful Blooming Wild statue by Karen Hahn titled Courage (4003985) and on the back it reads; “Breast Cancer.  Two words, my life has been changed forever. There are Bad days when the darkness comes and there are Good days that promise Hope. For those women who have gone before me and for those who stand be me, for out Mothers, our Friends, our Daughters, for Ourselves…..I say, “Look Fear in the face.  We are more than these bodies.”  Being sick doesn’t mean being weak.  We are Strong and we will not let this beat us.  We will Fight and We will Survive.”  After I read it we just hugged each other and cried.

My shoulder area is kind of gross if you want the truth and I know you do!  Woke this morning to yellow crusty stuff and a bit of blood.  Kind of disgusting actually!  Not as sore as it has been though if you can believe that!  Maybe because I kept clothing off of it all day yesterday.  The last few days have been miserable.  The area blistered, then the blisters broke exposing raw skin and then that blistered and broke exposing a second layer of burned skin.  Wow!  I have just kept slathering on the Biafine and keeping clothing off of the area. I cut the neck out of a T-shirt and put my left arm through the neck.  That still rubs some on my skin but misses the shoulder area.  That is the only place that really hurts though.  The whole rest of my chest that was radiated is red but not really sore, just a bit tender, and no blisters as yet anyway.  The area getting the boost treatments is not really even red.  So…………….once I get past this stage of healing I should be fine.  I know that compared to some people I got off easy as far as burning and blistering but you know what?  When it is you that is hurting it really doesn’t make it any better that you have it easier.  Hurt is hurt!

I saw the Radiation Oncologist on Monday and he said I did far better than he expected.  He looked at my skin and especially my shoulder and said that now it should start to heal since it had been almost a week since the last radiation to that area. Remember, you continue to be “hot” for five to seven days after treatment ends.  I won’t see him again until October unless Lucy Lump acts up.  I can barely find her now so I feel, too, that it is nothing.  Remember how I used the BodyGlide (www.bodyglide.com) after my bi-lateral mastectomy to keep clothing off my sensitive skin?  I took the package in and had the doctor look at it and he says I can use it, no problem, as soon as I finish radiation which by the way is this coming Friday.  After today, only two more to go!

I am okay in the morning but by afternoon I am “out of gas.”  Be glad when that starts to wear off.

Hair report – Head hair continues to thicken but has not grown much.  Very silver!  Not at red hair in sight!  Eyelashes are more normal looking except the ones on the left are crossing over one another. Like they forgot their growth pattern!  My eyebrows straightened themselves out so I am hoping my eyelashes do, too!  Cat hair on face still there.  That’s about it, all growth seems to be above my neck!

Have not had any more of those episodes where my hands and feet itch but yesterday the top of my middle finger itched for hours then stopped!!!!!!!!!!!!!  Just the top of one finger!!!!!!!!!!!!  Leg and Foot Cramp Lucinda Faye has returned with her own new persona.  Instead of the dreadful cramps like before, these ripple up the back of my calf like an electric shock.  Usually only one, sometimes there are two in a row but much easier to handle.  At least I don’t feel like killing her! 

All in all, I am on the mend.

July 6 – Week 7, Day 3, 32 treatments to date.  What a day and it is only half over.  Started off this morning with my shoulder area with the skin cracked with dried blood and yellow dried gook.  Yuck!  Didn’t hurt much, though.  Took my shower and lo and behold most of that washed off with the excess cream.  It still is red and cracked and looks a bit like alligator skin with still a few blisters but not too bad, really.  Found a camisole I can wear out and about that the straps do not touch my sore area. The area directly under my arm and next to my breast is very dark in color and is beginning to itch as is the area directly under my left breast. Not like the shoulder area did, though.   It is done “cooking” now so will not get any worse. Only ONE more treatment to go!  I will finally get to wash off the blue ink off Perky Polly that has been her constant companion for weeks now!

Found out something more about my radiation yesterday.  The shoulder area that is giving me the most trouble (really the only trouble) is the only area that got conventional radiation.  I didn’t know that until yesterday.  The tech said that when I mentioned how that was the only area that burned like that and he told me it was because they had to use conventional radiation in that area, that it was too small and awkward an area for the IMRT.  So I really got three different types of radiation – Conventional X-ray, Intensity Modulated Radiation Therapy X-ray and now finishing up with the Electron Radiation.  Well, aren’t I just special!

On with my day.  I saw Therapist Debbie this morning and thank heavens for her.  Poor woman, she gets to hear all my deep dark fears, whinings and moanings and she HAS to listen to me!  I have been very sad lately, I know it is normal, but it is draining on what little energy I have right now.  She told me to go right on ahead and feel sorry for myself, to invite good ole’ Feelingverysorryformyself Francine in and to welcome her, that I should be feeling sorry for myself.  You know, sometimes you just need someone else to tell you it is “okay.”  I am also going to mention something here that I said to her but actually had not intention of writing here in the journals. This is NOT a plea for sympathy nor is it a criticism of anyone I know.  It is just a fact.  It is this; When you have cancer the first time it is a really big deal, to yourself and to everyone who knows you – when you have it again it is not quite as big a deal except to you.  It is like getting married for the second time.  I write this only so you will know that to the person who has it again it is even a bigger deal than the first time and much more scary. Believe me, it is not the “Been there, done that” syndrome! Also, no one really wants to deal with the fact that the nasty stuff can come back!  I told you Sad Sadie was visiting!  Why did I write this?  Not to make anyone change anything they do, just so that you are aware that it is terrifying to have cancer recur and no matter that you know how to fight it and that your prognosis is good – it is still terrifying.  Know that the person is really more frightened than they were the first time around so you don’t inadvertently make the mistake of treating a recurrence that someone has experienced lightly.  Geez, Soapbox Sue just has to get the last word in, doesn’t she!

Guess what?  I am happy to report that my itchy finger was caused by a bug bite!  A nice normal bug bite!  I could feel it this morning when it began to itch again.  This is how your thinking goes, “Oh, goody!  That is so wonderful that it is just a bug bite!”  People would look at you very strangely if you said that out loud!  But you are so relieved to realize it is not a side effect of chemo or radiation that you are ecstatic!

The electrician is coming in the morning to begin work!  We went with Roland the Electrician.  It is surely fate.   When we lived in Italy we knew Guido the Plumber and Enzo the Mechanic who were friends as well as who took care of those various things so Roland the Electrician fits right in!  He also is the only one who called us back to see what we decided and to say he would really like to do our wiring.  He was the 4500.00 estimate.  That will allow us to also hire someone to do the insulation and dry wall so we should be moving along at a nice pace now!

I bought something for myself today that is a bit out of the ordinary for me.  A stuffed bear.  I went into Michael’s to buy crochet thread so there was no reason for me to be on the aisle where the stuffed animals are that you dress up like you would a doll. But, I was there.  As I walked down the aisle I saw some fur that I thought looked interesting and I picked up the animal. It was a monkey and I really don’t care for monkeys so I put it back.  I then spied a leg sticking out and picked that one up.  Why?  I have no earthly idea!  But, I did.  This bear was looking right in my eyes and conveyed that he cared for me.  Truly, I have not lost my mind!  He was soft and cuddly and I knew right then that he was meant to be mine.  Into the cart he went!  When I checked out, all my stuff went into the trunk but him, he rode up front with me and sat in the passenger seat!  I have carted him all over the house and a few times I just sat and hugged him and cried. I cried because I am finally almost done with radiation.  I cried because I finished chemo.  I cried because I have to get a brain scan.  I cried because I don’t know what the future holds.  I cried because I am sad I had to do all this again.  I cried because I am weary of all of this.  I cried because we are finally moving ahead again on my dream studio.  Lordy, Sad Sadie and Weepy Wanda are quite the pair!

July 7 – Week 7, Day 4, 33 treatments to date – DONE!  Weepy Wanda is still following me around.  Got very emotional right there on the radiation table just knowing it was the last time I would have to be there. You have to be completely still so I had to squash her right away!  I received a certificate from the Radiation Oncology Staff.  It said that I had satisfied all the requirements and has successfully passed the examination in hard table, cold room, awkward positions and cold hands.  There was also a tiny Guardian Angel lapel pin attached.  That was nice.  As soon as I walked out of the building I teared up again – it was so anticlimactic to just walk out and be done.  No horns blowing or people cheering, just an ordinary day.  How can that be when it is a momentous occasion for me?

Had to get home because the electricians were there working!!!!!!!!!!!!!!  Yea!  What an emotional day.  Up, down, up, down.  They had to leave this morning for a couple of hours so I grabbed a nap before I went to treatment and then had to nap again after they left for the day.  Am very tired!  I will be “hot” in the area under my breast where the last tumor was for the next five to seven days and then I should start to build back up.  Shoulder looks pretty good actually!

July 8 – No more daily dates to record!  DONE, DONE, DONE!  I am sure it will all hit home when I do not have to leave my house on Monday at 1:30!  My, oh, my, that was a long haul.

Went to a meeting this morning with my friend, Patte.  She had won a very prestigious award and I wanted to be there for her.  I have to wear a camisole that bares my shoulder area for the time being and it is satin and tends to shift around so I told her she was on “boob watch” and if the Perky Twins looked like they were trying to escape she was to give me a poke.  She only had to poke me once and did mention that it was the first time she had ever had “boob watch!”  Just look at how I have been able to broaden her horizons!

Came home around one o’clock and was in bed by 2:15!  Slept all afternoon.  Harold said he kept checking me to be sure I was still breathing!  Last night that dreadful Lucinda Faye kept visiting and I was up four times with leg and foot cramps.  I believe that this time it is mostly my fault.  I have not been drinking enough liquid and if your muscles get dehydrated they can also cramp.  I should know better since I am prone to the dratted things but I guess I lost focus on that!  After last night, focus is back in place!  It is now 7:30 p.m. and I have just finished mowing the lawn (I do not have a big lawn, I have managed to decrease the amount of grass I have to mow over the years).  Had to wait until the sun set.  Am now resting with a cold drink.  The whole point of this is that I do have to rest and rest hard but then I am A-okay!

July 9 – Be forewarned!  Miserable Miranda, Itchy Inez, Complaining Clara and Whiney Whitney are all in residence at the moment and all clamoring for attention!  It all began last night when the inside of my right foot began to itch as we were eating dinner.  After I came in for the night and sat down in my recliner intending to crochet a bit, both of my feet started to itch.  It feels like a million mosquitoes munching away!  I ran and got the Benedryl cream and slathered it all over my feet.  It only helps a little bit but it does feel like you are at least doing something to alleviate the itch.  It would subside for a bit and then come back strong.  Forget the crochet!  About midnight I was so tired and wanted to go to bed but my feet were still on fire and now I had a headache to go along with all of it because when I get too tired I get cold and can’t seem to get warm so was trying to warm up along with all the itching.  Not in a good mood.  Wouldn’t you think scratching all the time would warm me up!!!!!!!!!!!  Finally, about one a.m. I felt I was tired enough to get to sleep and my feet had calmed down a bit.  Slathered on more cream for good measure.  4:30 a.m. I am startled awake by more intense itching and still have the dreadful headache.  Got up, scratched and scratched, dragged my feet along the carpet, applied more cream and then…………………….all my fingers started to itch!  It doesn’t help that I know what is causing it, my nerves that were damaged by the Taxol are beginning to regenerate but I feel like I have footballs for feet and softballs for hands.  They are not really swollen at all, it just feels like it. I am having to take scratching breaks as I am typing this!  On the positive side, no leg cramps last night!  That would have been enough to send me right over the edge!  Oh, I do not like this at all!  Cannot even think straight!  Geez Louise – I would rather deal with radiation burns!!!!!!!!!!!

Photos of the Week – There are two photos this week.  One is of Stylish Stella and the other is a photo my friend Jasmin sent me after her Avon Walk for Breast Cancer that raised 8.5 million dollars!  Jasmin did the walk in my name and for another friend of hers with breast cancer.  Jasmin is the one right in the middle front in the pink shirt. Thank you Lord, for people like her.  She walked something like forty miles!  My body would collapse in on itself if I tried to make it walk forty miles!  I am sure every persona in there would be yelling at me!  I believe she trained for months to do that walk.  Now that is dedication.  Yea, Jasmin!

Take good care of yourself!

Margot   a.k.a Perky Polly – Keeper of the Perky Twins, Stylish Stella, Miserable Miranda, Sad Sadie, Weepy Wanda, Leg and Foot Cramp Lucinda Faye, Soapbox Sue, Itchy Inez, Complaining Clara and Whiney Whitney.


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