Update 70

I receive a great magazine, free of charge, from Cure.  It contains cancer updates, research and education.  In the current issue is a great article on Herceptin for anyone who would like to know more about that drug.  The internet version does not have the great pictures that the magazine does but if you to the website you can get the issue.  It shows a persons back and says Back in the Race. Here is the web site address
http://www.curetoday.com/currentissue/features/herceptin/index.html or just www.curetoday.com will take you there and you can see all the other great stuff in the magazine.

May 17 – Just Herceptin yesterday.  No problems at all, I crocheted during the whole hour and a half as I get no drugs to make me sleepy.  Just the Herceptin.  Went out to lunch after and ran errands.  Except for getting stuck with a needle and having to sit there for so long, getting the Herceptin is a piece of cake! 

Feeling quite good today, upbeat.  Saw a lady at treatment that is about on the same timeline as me except she’s a “first-timer” and we always compare what is happening.  She went for her radiation simulation one day and began treatment the next day.  I had my simulation on the 4th  and “hopefully” begin tomorrow.  They are doing a much smaller area on her and using standard radiation.  I am much happier (note the variation of the word “happy” here!) knowing they are using a variable technique that will help to spare my heart and lungs.

Garden looks glorious!  We have been having a drought here and keeping things going with just the garden hose is a bit tough.  We have a sprinkler system but it is shut off for the back as all the pipes are now under the addition.  Harold will have to re-pipe the back when we are done building.  You can only water twice a week anyway with a sprinkler system so things have been looking a bit brown.  Actually, only that horrid grass. I am going to get rid of all grass on this property if it takes me forever!

With Harold’s new job he is working more hours so has less time for working on the addition but………………we may hire someone to do the drywall!!!!!!!!!!!!!!  Wouldn’t that just be great!  Not looking forward to that part of the “do-it-yourself” plan!  Haven’t done anything since the air conditioning.  Still trying to locate an electrician.  The one we had did not work out so………………..   We cannot go any further in construction until the wiring is in place. Drats!

I must tell you that I usually write when I am either up or down so you probably think that is all I ever am, but no………………I am in the middle and quite content a good bit of the time.  I have a lot of greats that I really appreciate.  Family, friends, job, house which all make for a great life.  I actually feel like I have good health even though I am going through all this.  A friend had made the comment that she felt she was blessed with good health and the way she said it I knew that meant opposed to me with bad health and I thought to myself why does she think I have bad health?  Well, DUH!  However, other than the diabetes (controlled, last A1C was 5.2 which is excellent), arthritis (tons of people have that) and a couple of bouts with cancer (caught early) I really am quite well.  I can tell you that I can work circles around my “healthy” friend!  I wanted to tell her not to feel sorry for me, I am actually doing better than she is! Hello!  New persona!  Upbeat Ursula!  How nice to welcome her into the “family!”

I am an addict, I admit it.  What kind of an addict?????????? A wig addict!  I simply cannot help myself.  I am going to order two new ones today from a new company, www.paulayoung.com.  It will be sometime before I have nice hair again and I REALLY like just shaking out a wig and plopping it on my head and being ready to go. I really am considering keeping my own hair fairly short (not THIS short mind you!) and using the wigs.  It takes me forever to get my own hair to do those things that are practically built into the wigs and they never need to go to the hairdresser or need to be colored! 

May 18 – Bummer day.  I didn’t start radiation - again!  I went in for my appointment and they spent an hour checking all the settings and other data.  Had to lie still for all that time but nothing hurt except my arthritis! Drew all over me again in blue marker, had to come straight home afterwards as I have blue marks all the way up under my chin!  Not sure what the drawing indicates but there were three techs involved and they all kept calling out numbers as the machine moved around me.  Big ole’ machine!  Started out with the hospital gown on but ended up with it at one point bunched up in the middle of my chest with both of the Perky Twins uncovered! Left arm up over my head (that does tend to flatten the tummy area!) and my right arm down by my side.  After a bit, Dolly (right breast) got covered up again but Polly was out for the whole time!  They apologized but I told them I have no modesty left whatsoever (good thing!) so not to concern themselves over it!

May 23 – Well………………………I finally started radiation yesterday but was way to upset to even write about it.  It was not the radiation itself, that did not hurt, it was the information I received. For starters I have to tell you that I am really getting tired of being in “special” cancer clubs!  Of course I could not be the norm, oh no, not me! So keep that in mind as you read of all my trails and tribulations that I am one of the extremes.  Oh yea.  Morose Mona is here visiting but she really must go as she is wearing out her welcome very fast!

Got there at 4:00, got my new card with a barcode to identify me so when I run it under the scanner everyone in the building knows I am there!  In to see the doctor first, will see him every Monday.  Had my list of questions all ready to go.  He asked how I was and I told him I was “Wound tighter than Dick’s hatband with waiting to get started.”  I actually have no idea who Dick is and why his hatband was so tight but……..I was uptight.  He then says that I am a very complex case and that they have dozens of hours in on me already, just setting everything up.  My file is about three inches thick and I hadn’t even started yet!  Ooooooooooooooo I do not want to be complex when it comes to treatments!  He said the shape of my body makes it harder to direct the radiation beams.  I must get a clarification on just what that means.  I asked if it was because I was short (thinking that things might be more compressed) and he said no, just the general shape of your chest area. Hmmmmmmmmmmm.  Also, they are also doing an even larger area, from the middle of my chest over to my left collarbone to my shoulder to under my arm then down and over under my breast.  That meant the treatment also went from four fields to six.  I am going to list the questions and answers so they are clear.

Q. Is this going to increase my chances of getting lymphedema in my left arm?
A. Yes.

Q. Is there anything more I can do to prevent it?
A. No, just keep on doing everything you have been doing for prevention.

Q. Because the radiation is on my left side is that going to increase the risk to my heart and lungs?
A. Yes.  You are considered high risk and that is what has taken so long to get set up.  We have done everything possible to minimize your risk but you are still high risk.

Q. What is radiation pneumonia?
A. It is not pneumonia, it is pneumitis(sp) which is what the risk is, inflammation to the heart and lungs.

Q. What happens if I get that?
A. We treat you with steroids until it clears up.

Q. Since this is my first treatment when do I need to start careful in the sun?
A. Right now and be very careful since part of the area (my neck area, by my collarbone) will not be covered by clothing.  Wear sun block and stay out of the sun.

Q. How many actual treatments?  (I was expecting him to say 30 since he told me six weeks.)
A. 36 to 38.  The last 7 or 8 will be directed only to the sites of the two tumors.

Well…………………..I am sure I do not need to go into detail with how all that news made me feel!  That makes me finish on July 14th!  I had hoped to be done much earlier than that. On one hand I am so impressed they have done so much to protect me while treating me and that all this technology is available to me because I never want to have cancer again but on the other hand all I can think of is “Oh my!”  Actually the words were a bit stronger but I am trying to keep it clean here!

I had no more questions (then anyway, I have already started a new list!)  so off I went to get my treatment.  Same routine as last Thursday when they were doing their final check on everything.  Except – this time it was for real.  That big ‘ole machine moved all over the place and there is a glass area with moving small bars behind it so I could see myself in the reflection of the glass.  A bit disconcerting as Perky Polly was visible, too!  Took a bit longer than I expected and since I was so uptight I was pretty stiff when I went to get up!  I am taking my camera with me today to get a photograph of  the “Great White” and will post it at the end of this update so you can see what a radiation machine actually looks like!  When the tech came in he said he was going to have to watch it when I came in for treatment because I had so many fields to do he found himself snacking out of the candy jar while he waited. He was just chatting but of course that meant I was getting more of it than most other people. Oh yea, again.

I could hardly wait to get out of there.  I was pleasant but knew I was on the edge.  Got to the car and the tears started.  Had to drive so held them in check.  Got home, made a cup of coffee (still sniffling) and went outside to my favorite garden area to have a good cry armed with a box of tissue.  Sat down and got right back up again and came inside as I had to scream and rant and cry loudly and could not do that outside.  No one was home so I really let loose!  My throat is even sore today!  Ranting Rita was out and in full control! I must say after I had my screaming fit I calmed down and was just sad. Harold came home and I could see him trying not to get tears when I was telling him what had happened.

My mind and emotions are in such a quandary right now.  It is the old cancer story all over again.  I feel just fine……. and now the treatment that hopefully will stave off another recurrence may damage my heart and lungs, may give me lymphedema and play havoc with my diabetes again if I have to take the steroids not to mention my skin burning with possible permanent scarring. The Herceptin I am still taking can cause heart damage too, but decreases my risk of another cancer recurrence by about fifty percent.  I read something that said that cardiac toxicity (don’t even like the sound of the word!) is manageable with medication but that it was still a balancing act for the doctor and the patient to weigh the risk of heart disease with the potential benefit of cancer-free survival.  Is it my imagination or do I have a choice between two really “not so nice” things?  Of course I do have a third choice and that would be to ignore the advice of my team of doctors, do nothing and hope the cancer never comes back.  By nature I am a risk taker and I see no reason to change now so…………..on with the show!  I don’t like it but I like the alternative even less, so I will be adding a new persona to the family, Vanessa Vampire.  The sun is now my mortal enemy and will make my skin blister if I get in direct rays and then I will shrivel up and turn into a pile of dust……………maybe I am getting a bit carried away there but you get the picture. I may take to wearing a Spanish shawl that Harold bought me in Spain over my shoulder to protect my skin from the “death rays.”  Hmmmmm…….which wig would go nicely with a black, fringed shawl with bold red flower embroidery?????????????

I will be going in August for another MUGA scan of my heart (which actually produces a moving image of the heart muscle to measure how well it is pumping blood) and if there has been more damage (I had some from the first chemo of Adriamycin and Cytoxin in 2003) they will stop the Herceptin.  Radiation will be over by then.  That will give me a  little over a month to recuperate before I leave for Houston.

I am fine this morning, Vanessa Vampire and I went for my walk before the sun rose and then Greta Gardener and I gardened in the shade with sun block slathered all over for another hour and now I am in getting ready to start work and I will work until 3:00, take a snack break and go for my treatment at 4:00.  All the rest of the treatments from now on will be at 2:00 so think of me everyday at 2:00 Eastern Standard Time since you know exactly where I will be!
Later the same day – two down, 36 to go!  Today I was fine.  Thinking on the way home that even if I get every one of those dreaded side effects it will be worth it to still be alive.  I have to watch myself, I am getting too down, too often lately.  Even with the problems I have and am facing, I still have a lot of “health” and energy left to work and create and simply to be able to enjoy family, friends and life.  A friend wrote today who is just beginning her journey and she said it best – “I refuse to become a victim.”  Isn’t that great!  I must repeat that to myself often!

Very sad news today, my friend who had been moved to hospice died today.  I am very sad my friend is gone but not sad that she is not suffering any longer.

May 25 – Three down, thirty-five to go!  Found out some more info today.  I am not to put on any kind of cream yet, not even for prevention.  Not until I start to get a bit pink and then they will give me samples to see what works best for me.  If the samples don’t work then they will give me a prescription for a cream.  The doctor will check my skin once a week but, of course, if I am sore or irritated I can talk to the nurse and get treatment going sooner.  I counted yesterday and the machine delivered fourteen doses of radiation.  Fourteen!  I do not know what is “normal” but I know fourteen is a lot because I told the tech I had counted and he said that yes, it was a lot.  I was sure I could feel skin irritation after I left yesterday but I don’t feel anything now so it was probably my nerves!  I slept for twelve hours last night!  I had errands to run yesterday afternoon so had to slink around avoiding the sun, ever conscious of my Vanessa Vampire persona, holding up my shirt over my neck area and pretending that was normal.  Talk about a “New Normal!”  Bought a straw hat with a huge brim so I can wear my own sun umbrella when I am outside.  Going to attach a huge flower to the band area, maybe even a long peacock feather!  What’cha think?

Noteworthy news, if you are not in EXACTLY the same position you were before, the radiation machine will not turn on!  I liked hearing that.

Okay, here are the photos of the week. I call the radiation machine “Great White” and you can see that it is huge! Look to the left and you can see the table I lie on and that lumpy stuff is my very own cast that keeps me in place. That big ‘ole machine rotates frontward and backwards and down to the right and left. It starts over on my left with the big rounded part down past my left side. It delivers a couple of doses, changing its area once or twice and then starts moving on up and over, changing and delivering radiation doses until it ends up on my right, just above my right side.

Look at the dark area on Great White under the rounded part. That is where the radiation comes out and that is the square looking close-up photo. Now you have been in a “virtual” radiation room!

click on images for larger view

Til next time,

Margot   a.k.a. Perky Polly keeper of the currently very visible Perky Twins, Vanessa Vampire, Upbeat Ursula, Morose Mona, Greta Gardener and Ranting Rita.

If you have any questions please email me


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