Update 65

February 8 – Forgot to add this yesterday.  Remember the lady in her eighties that had the nausea problem in the treatment room?  Well……………she is my age or younger!  I sat next to her one day and she had sandals and a short sleeved shirt so I could see her feet and arms and I noticed that they did not look like they belonged to someone in their eighties.  Didn’t pay much more attention than that on that day.  Then yesterday the girl that I thought was her granddaughter came in and the nurse told the lady that her daughter was here.  I don’t exactly know why I feel the need to tell you this, I guess because I was so surprised to find that out!  Her hair, what little of it is there is grey but then so is part of mine if I don’t color it red.  She is very feeble and weak and she has no teeth so that makes her face look older and she only weighs about ninety pounds and looks to be about 5’6” tall.  I think it scares me a bit.  Is it from the cancer or does she always looks like that?  Mind you, I expect to look eighty when I am eighty and I will be just fine with that, but not when I am fifty-eight! You want to hope that she always looks like that but it seems unlikely.  It is scary to think that cancer and treatment can make such changes to your body.  

Up until 2 a.m. and then I made myself go to bed.  Sometimes the Decadron keeps me up and since I had that heavy nap I was not tired at all.  Today is “red-face day” and my tummy is a bit uneasy so have been keeping saltines close at hand.  However, no cramps for two days now!

February 12 – Well………………the duck down is now a half an inch long all over except around the edges.  Jen was over last night and I had her place her fingers next to my scalp and cut off whatever stuck out over the top!  Had her leave the outer edges because even a little bit peeking out under a cap or under my wigs looks a bit more natural.  I actually had the most hair around the edges and right on top.  It was so thin and patchy and no matter what it looks awful but shorter looks less awful!  Jen brought me some cute hats to wear from a friend at work whose mother had breast cancer and sent them to her to give to me.  When I am done with them I am to pass them on, too.  Luckily it is cold here now as the hats are warm.  I feel better with something on my head.  I know this is vanity but it is also how you feel about yourself and what image you want the world to see when you are going through this.  I saw a woman in the airport the first time I was going through this and I still remember her.  She was a tall, black woman dressed in a gorgeous flowing outfit with beautiful jewelry and completely bald.  She sailed through that airport as if she were a queen.  I just thought to myself, “WOW!”  She had “presence” and pulled that off royally!  I am short, a bit plump, okay looking head, but do not have “presence” when bald.  If I saw “me” I would feel sorry for “me” and I simply cannot bear that.  In a wig however, I can pull off the “presence” thing and people actually stop me to comment on my hair.  I much prefer that to someone thinking “Oh that poor woman!”  Maybe it is because I only have two features that have gotten me through life as a “pretty woman” and they are my eyes and my hair.  Well, with no eyelashes and patchy eyebrows my eyes are compromised and with no hair, well……………………..!!!!!!!!!!!  I know all about “inner beauty” so do not need a lesson on it please, I am writing how I feel and I am sure other women feel the same even if they don’t want to admit it.  With no make-up and no hair I am not who I want to be even if it is fake!  I don’t want to be invisible and the “real me” is rather plain.  I am an artist by profession and I love to be surrounded by beauty and if it takes some extra “paint” and color” to create the look I want on my face and hair, so be it!  I have always admitted to being vain so this should come as no surprise.  I really am trying to get across why some women are fine going bald and some aren’t.  If your friend or loved one is uncomfortable going bald in public or in private, leave them alone!  If they are and you are the one who is uncomfortable then it is your problem, not theirs.  How a person deals with their looks during chemotherapy is a most private thing and it is hard enough as it is without others trying to get you to do things as THEY think they should be done.  The best suggestion is to see if they would like to go to the “Look Good, Feel Better” program for both men and women that the American Cancer Society puts on and info is available wherever chemo treatments are given.  Then they can decide what they want to do even if it is nothing.  Whoowee, Tirade Tania is on a roll here!  I can tell you that if I had to go around only bald or with a hat or cap (and sorry, but you can tell someone has no hair then, too) for close to a year or even seven months like last time my attitude would not be nearly so “positive” (and we don’t want to get me started on that now do we!!!)  As it is, I have fun with the wigs and don’t care if someone knows it is a wig (I usually tell them I am undergoing chemo when they comment) but it is my choice how I project myself.  Maybe it comes down to control over the situation.  With wigs I am in control of how I look, not the cancer.  Actually doesn’t matter why – it just is!  So please don’t try and convince someone of how they should look during this very stressful time. Tirade Tania signing off now (aren’t you glad!).

Construction Connie news – decided that I still have too many pavers left over so am increasing the size of the patio!  I started taking up the red border and will pave that area with pavers instead. I also got “high” in an area and took it all up and redid it!  Can’t help myself, I am a Virgo!  Harold is proceeding nicely on the roof and we signed the contract for the air conditioning/heat unit this afternoon.  It is set for April 14!  Harold said he feels that is accurate!  Wow!  That seems close to me.  He will be doing all the duct work and whatever other construction is involved and the guy spent a good bit of time going over all that with him. Moving right along!

February 13 – A new wig persona has been added to the list!  Fiery Fiona!  I hope to have a photo for you at the end of the update.  I got the three in from Beauty Trends (www.beautytrends.com) and one was a “NO” right off, one was a maybe until last night and she is now boxed up to be sent back and one was a keeper.  It is red, of course, and longer than Sassy Simone (the photo on the website Home Page) and lighter and redder in color.  Not as curly, my spiky style that I love.  When I decided to keep her I wet her and then worked styling gel all through the wet hairs and hung her upside down to dry!  Yesterday was also hair washing day for Joan Jett and Sassy Simone in preparation for my trip to Vegas at the end of the week.  They are hanging upside down in the shower at the moment!  They will be hanging like that all over my hotel room in Vegas, too!  What a sight!  As I am sending the two back I ordered three more to try.  Their return policy is very fair and they were easy to deal with so they have my recommendation. 

Constipation Cora is here for a visit.  I am now up to four Senna-S at night and three in the morning!  My 700 Tablet deal from the pharmacist might not be enough at this rate! Treatment is again tomorrow so I have to get this resolved!  You would think your body would get in a routine after a while, wouldn’t you?  I feel okay now but I won’t soon!

Leg and Foot Cramp Lucinda Faye has taken a breather, thank heavens!  Still feel the crawly sensation at times but no actual cramps and no waking up in the night for the last few days.

February 14 – Happy Valentine’s Day and…………….I am at the halfway point in my chemo!  We all got a little Valentine card with a red sucker on it from the nurses and they passed around big ole’ cupcakes with tons of frosting….but I was good…..I thanked them for their offer but had to decline.  The waiting room had trays of cookies and cupcakes and candy for patients and their companions.  Nice touch.

No Burning Aranesp shot today, red blood count is at 12.5, even up from last week of 12.3 so I am good to go for Vegas!  I give up on trying to figure out when I will get one of those things.  I guess when they tell me!

A note on something here that I keep forgetting to pass on.  I’m not sure if you remember from my first go round my getting a freezer pop when I got the Adriamycin?  Well, they have found that the freezer pops don’t really have any effect and that some people are just more prone to mouth sores than others so they don’t do that any more.  I was convinced it worked for me but maybe it was because I used Biotene toothpaste twice a day and the Biotene mouthwash before bed every night.  Doing the same thing this time.

Commented to the nurse today about being so happy that nausea has not been a problem as I was getting my “push” of Aloxi to prevent nausea and she told me that they two drugs I am getting are not too bad for nausea and that in my first go round of chemo the Cytoxin is not too bad, it is the Adriamycin that is the biggie for nausea.  Just a few tidbits of info I gleaned today.  Also went hard sound asleep for two hours today!  Slept right through my lunch!  Got a double dose of Herceptin since I won’t be there next week (aw gee, I will really miss my Tuesday routine – NOT!) and I get that first and they do the blood work.  That lasted about an hour and fifteen minutes so I got some work done. As I am getting the premeds (they are in a drip) I can feel that Benedryl start to kick in.  I get all set up – blankie over my feet, gloves on my hands, blanket and coat over the rest of me except where they have to access the port and off I go into la-la land!  It is not really that cold in there but when you are just sitting there and when I get sleepy I get cold.  Speaking of cold – Freezing Frieda seems to have gone back to her own home as I have not had a visit in quite some time now and it has been really cold these last few days (had to cover my plants outside as it got down in to the 20’s!).  Maybe my body is actually getting used to these drugs! That’s a scary thought!

The nurse did warn me there was blood today under my band-aid where she took out the chemo needle and I looked down and sure enough, a bit ole’ patch of dried blood and to wash it off with soap and water later!  Good thing she told me, I would have had a heart attack and thought something was wrong!  I said, “Gross!” and she said, “It is yours!” and I told her I didn’t care whose it was, I still thought it was gross!  She just laughed.

I read over my tirade about the baldness and the wigs and wanted to go back and tone it down a bit but I didn’t.  I really felt that way that day.  Still feel that way but don’t know if Tirade Tania would go off on such a, well, tirade!  Makes me sound whiney and I am not keen on whiney people!  By the way, the lady next to me today was commenting on how she hated the baldness worse than anything and always wanted something on her head, even when she was asleep………….just thought I’d pass that on!  She also enjoyed the Look Good, Feel Better” program.

Having company tomorrow from Louisiana over for dinner.  They are in town on business and really want to see the addition for themselves.  Oh goody, I get to show off!  I must put all my plants back out that I dragged up into the new den.  Used it as a second greenhouse!  The ones in the ground I covered but if they were in pots I just brought them up under cover.  By Friday it will be in the eighties here so our cold should be gone for good for this year.  I find I MUST go outside every day for at least an hour.  It calms me and soothes my spirit.  Probable scientific explanation is that I am getting Vitamin D from the sun which raises some level of something in your body but I like my version better!

Harold should have my skylights installed in the studio by the time I return from Vegas!  That will be exciting as it is just a big empty room right now with none of my personal touches (except for the lace curtain in the empty window of course!).

Wore Sassy Simone to get my treatment as she fluffs up nicely in the back after being squashed for hours on end sitting in that recliner, then ran errands, came home for a bit and had to go back out and felt like a change so switched to Fiery Fiona!  While I was out I bought some new barrettes for Joan Jett so they all got in the picture today.  I have not heard from my hairdresser so I guess Romantic Rose is history and I am not so fond of Dramatic Drucilla this time.  She is too dark, almost black, and maybe I am paler this time but it is too much contrast and to be truthful…………..I really like the red ones!  Hope I can find one or two more to add to my collection since I will be wearing them until September or longer.

All in all I am feeling quite well and really looking forward to my Vegas trip.  Not ready yet, but hey, I still have three days to prepare and don’t anticipate any “down days”!  I must say, that is a comforting feeling to have in the midst of all this. 

February 17 – Arrrrrrrrrrrrrrgggggggggghhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!  Leg and Foot Cramp Lucinda Faye is making quite a nuisance of herself!  She got me up three times last night, shot right out of the bed!  Now I will be tired and cranky all day. I will be sooooooooooooo glad when she leaves for good!  Took the quinine pills twice last night, don’t know if they helped physically but it felt like I was at least doing something about them. I am at the limit of what I can do for the cramps.  I am eating plenty of high potassium food, taking the extra calcium and magnesium, eating the two Tums for even more calcium, drinking my quinine water and resorting to the quinine pills when I have a night like last night.  I am only half way through and I really fear the cramps getting worse. This is not a nice side effect at all!

As long as I am being Complaining Clara…………Constipation Cora is making me crazy, too.  Just when I think I am going to be okay for another week SHE comes along and makes my life miserable.  She attacked in full force this morning (after Leg and Foot Cramps Lucinda Faye was done with me for awhile, although she attacked again as I was sitting outside eating my lunch and just minding my own business!  She is very rude.) and I think that worrying about flying out tomorrow and NEEDING to feel good was making it worse.  I am okay now but feel like I have been in a big fight and got beaten up!  I wonder if you can overdose on Senna-S tablets??????????????  How embarrassing would that be?  “Did you hear she died of an overdose of stool softeners?”

Had my massage yesterday and at least the rest of me feels pretty good!

February 25 – I am back from Vegas and feelin’ fine!  I taught all four of my classes and never got too tired.  Played tour guide to Nurse Martha and we must have walked twenty miles this past week. I came home late last night (later than I should have because the airline lost my luggage and I had to stay and deal with that!) and then spent the day outside working in my garden and doing construction cleaning!  Whoowee, I am feeling so good!

Only problems I had during my week in Vegas were those dratted leg cramps. Two nights they got me out of bed.  I will be so glad when that problem is only occasional like it was before chemo.  All my classes were in the afternoon so I could sleep late each morning and I had all my evenings free.

I took three wigs with me – Fiery Fiona, Joan Jett and Sassy Simone.  I wore Sassy Simone on the plane into Vegas and from then on I only wore Fiery Fiona!  I love that one.  I am going to get two more in the same style but in different colors!  Sort of like when you buy the same shoes in many different colors!  I got compliments every single day and a lot of them from complete strangers, even on the elevator!  They all can’t be wrong! 

Going to Vegas was such a good thing for me.  It got me out of my chemo routine which I must say is a bit of a drag.  I proved to myself that I could work a whole convention and not give out.  We all know I am vain so it was so nice to have everyone tell me how great I looked!  See, now I feel great, too!

March 1 – Finally, some really good news to share!  Saw the oncologist yesterday and I am beginning Round 5 instead of finishing up Round 4 and he doesn’t think he will have me do the extra treatments he talked about in the beginning so I only have five more chemo treatments to do and then do the radiation!  Five! The countdown is on!  I do have to come home a day early from my next teaching trip as he doesn’t want me to miss another week so soon after missing the one due to Vegas.  I am driving so it is not a hardship and it was just going to be a play day anyway.

Got a Burning Aranesp shot today, counts were down to 11.3.  The nurse fund out from the drug rep why it burns everyone as they get it and he said it was because the shot contains protein.  Just a bit of FYI. 

I wore Fiery Fiona and got compliments all over the place!  The nurses knew she was a   wig since they see me every week but the two women next to me did not realize it until we were talking a bit and I mentioned my only side effects this time were the leg cramps and losing my hair.  They were totally surprised!  How fun that was!  Well, the questions started and a couple of nurses came over and next thing you know I whipped Fiery Fiona  off my head and she got passed around so everyone could feel how lightweight she was and how real she felt being synthetic and I sat there with my little bald head! .  Now I have to bring in the catalogs so everyone can take a look at the different styles and the nurses are interested in the wiglets and falls! Again, the web site is www.beautytrends.com if you are interested.  Since I had Harold shave my head two nights ago I feel such a sense of freedom if you can believe that!  It doesn’t look good, mind you, but I don’t look like I am dying of radiation poisoning now!  Our neighbor came over last night and I could hear Harold talking loudly so I would be warned and could run in a get a cap or wig but I chose to go out bald!  I had my makeup on so my face was fine, it gives me just enough “presence” to feel comfy at home.  He hardly batted an eyelash and said I looked fine no matter what.  Of course, when Harold shaved my head I bagged up the hair!  I can’t seem to help myself!!!!!!!!!!!

I have ordered two more wigs like Fiery Fiona in different colors!  I love that wig!  It is called Perfect Sense in the catalog.  One is brown with the “chunks” of lighter color near the front and the other is auburn with red tips – not exactly sure what that one will look like.  Also have three more coming in different styles, they may be too long for me but if they are I will just send them back!  Am having a ball with my wigs. Now I am not so keen on Sassy Simone and she used to be my favorite. I may take her and Joan Jett down the American Cancer Society if the new wigs work out so someone can get some use out of them. We’ll see. I do like having lots of choices!

Constipation Cora has come back for a visit – a brief one I hope!  I will be glad when I can send her away for good!  I imagine Leg and Foot Cramps Lucinda Faye will be here soon as I had treatment yesterday and she usually comes a day or two after to visit.

Addition news – Harold is putting the shingles on at the top of the ridge, my skylights are in and he has just a bit more to do on one side where he has to cut into the stucco to slide in the shingles and then seal it up and we will be ready for a FINAL inspection on the roof! Yea!  I am almost done enlarging the patio, I increased the size by a third. They will be here on April 14 to install the air conditioning.  Moving along slowly but, moving along!

This is turning into a book so I will close for now.  I promise more pics of wigs and house soon!

Get a mammogram!  It saves lives!

Love,  Margot   a.k.a Perky Polly Keeper of the Perky Twins, Constipation Cora, Leg and Foot Cramps Lucinda Faye and Tirade Tania

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