Update 33

March 20 – I have my compression sleeve! I feel so much safer now. It is like car insurance, you hope you don’t need it but are really glad you have it, just in case! Karen (the occupational therapist) gave me a list of suppliers of lymphedema sleeves and I am going to add a new section to the web site called “Sources” and list the addresses there. I also want to add a “Links” section with web addresses that I feel are worthwhile. If anyone has one that they feel would be beneficial, please email it to me.

Had a ball at Wings last night! All the staff came out and sang “Happy Birthday” to Harold and this is not something they ever do there. There was a little boy behind us in the booth and he was just about in our laps trying to see that cake! We gave him a decoration off the cake as his father said he couldn’t have a piece of the cake. Harold had a great time unrolling all his Truck Bucks and Chevy Change. His mom called last night so she added to the total, too, so he was a happy camper with all his loot!

Remember I told you last time about the memory thing? Well, here is an example. I sneaked out of the house yesterday, went and got the cake, took it to Wings so they could bring it out as a surprise. And they did – however, Harold said I had told him I was going to do that last week so he wasn’t surprised at all about the cake! I have no recollection at all of ever telling him about it. I only remember wanting it to be a surprise. It makes me so unsure of what I have done or thought I did that I have to double check myself all the time. I sent in forms a week or so ago that I have filled out and sent in to the same person for the last seven years, always the same form. This time, I didn’t sign any of them and forgot pertinent info on one of them! Thank heavens he called and let me tell him the missing info over the phone and fax in the signed copies! I wonder how bad the memory loss would have been if I had more than four treatments? No problem with my long term memory, just the short term.

Flavia quote: “You are a bright spirit and you have a unique purpose here on earth. Never underestimate your gift nor the power of your soul’s touch upon another.” I love that one! Think of how that applies to all of us who have shared the journals with others!

March 22 – Lovely weekend, painted and gardened, enjoyed family, what more can you ask from life?

March 23 – Well…………..I tried to “style” my hair to be spiky like Sassy Simone. The front around my face looked okay as long as I didn’t touch it but the side and back did not want to stand up at all and just looked odd. Slept on it and my, oh, my – I look like a “thug” you know, the burly guy with the dreadful stiff crew cut standing straight up on top with no hair on the sides or back with a gun that follows around behind a crime boss saying “Yeh boss, I kin do dat.” Not at all attractive. I asked Harold, “Do you see my hair this morning?” He just said, “Yes.” No other comment was needed! Guess I’m not quite ready to go out in public without one of the “girls” on my head quite yet!

Have an insect bite that I am watching like a hawk! First time I have gotten an injury on my left arm since surgery back in August! Looks like a spider bite. It is driving me crazy not to scratch! Mustn’t irritate or stress my lymphatic system! Especially since I fly in a few days.

Flavia quote: “When we offer a listening heart we give our loved ones a safe place to rest.” Love, love, love that one!

I leave for Knoxville tomorrow to teach, won’t be back until late Sunday. Worked hard at keeping my stress level down, I am usually a crazy person before a trip but this time I made myself slow down and do only what was feasible, not what superwoman would try and accomplish! Feel much better physically and in a much better frame of mind than usual. This message could be applied to everyone, of course, not just for someone who is recovering from breast cancer! Battling a dread disease certainly does alter your perspective on life in general! For the good, I must say!

I am pretty much back to work – my altered work schedule not my former one! Have some deadlines but not crazy ones. Am booking trips and classes into 2006 so people must feel I will still be alive by then! Me too! Working on my first Prime Your Palette Column for PaintWorks magazine since last August! Feels very good to be back in the swing of things, although at a lesser pace. Have an article to write for Glass Patterns Quarterly magazine on my fired glass technique with no deadline as yet, so I can get started without feeling rushed. Have accepted an assignment to create artwork for the Magic Metallics website and will be involved with different companies at the upcoming painting conventions so have a full plate right now. I travel now, once a month until September so must keep my strength up and my head clear to be able to enjoy all that I do for a living. My new motto is, if I don’t enjoy it I am not doing it – work wise anyway! And, of course, I must fit in my gardening time! And reading! I love to read. Funny thing, I didn’t do much reading when I was recovering from the chemo treatments. Seems that I only enjoy it if I can steal the time out of my day instead of having reading and TV being about my only options! The books were so heavy then, too, even the paperbacks. It was just too much effort back then. But now – I am back to my old avid reader self! Do you remember the old saying, “All work and no play makes Jack a very dull boy.” Don’t want to be considered a dull person now, do I?

Off to run errands and pack for my trip.

March 30 – Wow! This is the longest amount of time I have gone between days in my journal! I am back from my trip and spent yesterday out in my garden, renewing my energies.

I wore my sleeve and it was okay but I have to be very careful it does not roll down at the top as that acts like a rubber band at the top of my arm. I am very “compressed” when I fly. I also wear compression stockings as I have bad veins in my legs so I am always pulling up my stockings and now I also do my sleeve! No problem at all with the spider bite! It is gone and not even a trace remains to be seen! Hurray!

Arrived in Knoxville and sat in the airport for two hours before I got tired of waiting for my ride and took a cab to the hotel. Was mumbling to myself that I did not need this aggravation, could just be home in my studio and garden not wondering what was going on……………….mumble, mumble, mumble……….. turns out the gal read the times wrong and saw 1:11 instead of 11:16! All was well after that and the group I taught was just great. I expended a great deal of energy but was not overly tired. Even after teaching all day and going out to dinner each night I was still fine. My friend, Karan, came in from Franklin to take one of the classes and that was great fun. She came to my room and I whipped off my wig and then introduced her to the Twins!!!!!!!! She said my hair felt like cat fur and she was impressed by the looks of the Twins. Not at all what she had imagined a double mastectomy and reconstruction would look like. Impressed for the good I might add! So strange, it still feels like I am showing someone an appendix or gall bladder scar, not boobs! My biggest worry is holding my tummy in, not showing my chest!!!!!!!!!

Flew home on Sunday afternoon, had some dinner, looked at mail, crocheted and watched TV. Monday worked outside and unpacked. Today I got back to work and still have a bit to do before bed tonight. How normal does all that sound? I feel just fine, not like after Vegas when I crashed a couple of days after returning.

I have decided I have “Press ‘n Place” hair! When I wash it and press it into the places it wants to be it is fairly tame, but heaven help me if I try to make it go anywhere else! If I squeeze it between my fingers, it sticks up above my fingers about ¼”. More or less……….it is still uneven in its growth. Don’t have the heart to cut it yet, I mean – cut it into what??????????? Not like there is enough to do a style or anything! There is not enough of it to catch under a wig cap but enough to show at the hairline of the wigs.

Cat fur seems to be wearing down on my right side (I sleep on that side most so maybe it is rubbing off like baby hair does???) but is the same on my left side. Karan said she didn’t notice my cat fur and then I showed her what happened when I was backlit and she saw it then! At least it is not growing anymore!

Two Flavia quotes – “A simple act of kindness can change the course of a lifetime.” So very, very, true. “Believe in the wonder of life and know that each new day holds a promise in its hands.” Like that one, too!

Received lots of BodyGlide in the mail today from the guy who owns the company as a thank you for writing a testimonial for him on his wonderful product. Jaime suggested to him to include his product in the package women get at the “Look good, Feel Better” program that the American Cancer Society puts on for cancer patients so they can try the product for themselves. Will be interesting to see how he handles our ideas. Just amazing the paths I have gone down since being “afflicted” with this disease. Can’t say “ill” as I was never ill from the disease – only the cure! So “afflicted” will have to do!

I’m starting a trend! A friend wrote today that she got a bad haircut and color so went to the wig store and bought three wigs!!!!!!!!!!! How fun! If my hair doesn’t do something pretty soon, I may just cut it shorter (well, that would be shaving it now wouldn’t it!) and just stay with my own wigs! I am seriously debating on getting one the color of the brown of my own hair so you can’s tell where it is growing in so easily under the wig.

New boobs story!!!!!!!!!! This one is titled “The Disappearing Boobs!” Imagine pushing up with your arms like in a push-up. I was doing tummy exercises and was getting up off the floor and had on a T-shirt with a low neck and as I was pushing up I happened to glance down and saw…………no boobs! Where did they go????????? Seems that your chest muscles draw back towards your upper arms when you execute that particular movement!!!!!!!!!!!!!!!!!!! Since my boobs are just chest muscles with saline implants, it appears the implants go where the muscles go! Did anyone tell me that would happen????????? NO!!!!!!!!!!! Must tell Dr. J he needs to warn women about such things! Showed Harold and all he could say was “Well! They do disappear!” Don’t know how many more of these jumping/disappearing boobs surprises I can take!

April 2 – Well, my sunny disposition seems to have deserted me for the time being. I cried and cried last night, the really hard sobbing kind – way past Weepy Wanda! It began in the afternoon when I was in the store getting reprints of photos done for my next class. I was just looking around and came across a little garden bench, a bit tacky looking actually, but the message carved into the top of it said, “To plant a garden is to believe in tomorrow”, and as I read it tears welled up in my eyes and I had to stop right there, catch my breath and get a hold of myself. I felt like someone kicked me! Now that is a very nice saying so, what gives?????????? I left, went on about my business, came back hours later to pick up my photos and bought the little bench! I had thought about it all afternoon and felt the “need” to have it in my garden, tucked away so only the words show. I had been thinking that I was so moved because it slammed home that I almost didn’t have any tomorrows! So okay, I have reasoned out what hit me at first with the words and am on about the rest of my business. I make dinner and watched a little TV with Harold. Was complaining about my hair and he is saying at least I have some hair to complain about since he doesn’t have much of his own. I do appreciate that I have hair again but it is at such an awful stage, sticks out under my wigs so now I look like I just plopped the thing on my head with no regard to looking real, I DO NOT look good in a hat – I need height on top and cannot go out with my hair the way it is so…………….(I do know that is pure vanity but it is also my reality right now). He leaves for work (nights again for awhile) and I begin to watch ER. Well, people are dying, one of the doctors has a crisis and is sobbing and all of sudden so am I!!!!!!!!! Again, what gives! For a while I just sat there and cried then tried to get hold of myself. Images just flooded my brain – all that has happened, how I look, how I feel. I don’t want to play this game anymore but I have no choice. I wouldn’t have changed any of my treatment and I know it saved my life but…….. I am so tired of all this. My chest looks okay, but am facing still another surgery for the nipple reconstruction, and it will look even more okay. In itself that is fine but what a cost to my body and mind. I go on about my hair because it is still a very visible sign that something was wrong with me. Boobs I can cover up but your hair is just always there as a constant reminder. I feel fine except for the dratted port scar which itches again, only hurts once in a great while. Again, a constant reminder. Skin itches between my boobs for some reason and every now and then I feel a pulling inside like a muscle pulling for a moment. Hurts but is gone in a flash, just pulls you up short for a bit. Even with my beloved gardening I have to remind myself about the glove and bug bites and all that stuff about preventing lymphedema. The grocery store – carrying in the groceries and making sure I don’t carry the heavy bags with my left arm……None of this is earth shattering by itself, just constant so you never get to have a break from what has happened to you. Sorry to end this update with such a down feeling but that is the reality. I know I will be fine, but right now I am sad.

Love to all,


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