Update 52

July12, 2005 – I just thought of something I have not written about in quite sometime. Nipples! Why I thought of them this morning or even noticed them is beyond me but I did. I do not need to have them tattooed, that’s what I really noticed this morning as I got dressed. I haven’t given them a thought in………….I can’t remember when. The created areolas are a dark enough pinkish brown color on their own so tattooing would just make them darker and then I would have to wear a bra so they wouldn’t show through my clothes and we all know that is not happening! I spoke to one woman who did not have the nipple reconstruction because she did not even want a hint of a nipple showing through her clothing. She was anti-bra, too! She went the tattoo route and I wonder if she is happy with that?

It will be two years at the end of this month since I was diagnosed. All my “Anniversary” dates are coming up now. Easier to reflect back on them when they are more in the past.

How is the house addition coming along? Well, since the last update we have a slab. Contractor horror stories abound and we had to get the police involved. Bottom line, we are getting our money back for the block work that was supposed to have been done by now and we (mostly Harold, I am gofer and clean-up crew!) are doing it ourselves. He has about half the corner blocks in place and when we get to the middle rows I will begin to help lay the block! Far cry from even six months ago at what I am able to do!

Can you believe it? The scar on Tanya the Tummy (skin graft for nipple reconstruction) still itches like crazy! It has been almost a year so I figure it should stop itching on September 15 th! It took the chemo port scar about a year to quit itching. You can hardly see that one now. The scars from the mastectomies are still visible, probably always will be but so less noticeable now. I showed someone a week or so ago, she was very interested in what it all looked like, and she was surprised – I could see it on her face. Surprise and relief! I know people think I am probably disfigured but I can assure you, I am not. Different yes, disfigured – no. I do stay away from clingy light colored tops as they tend to show everything and since I am not exactly “perfect” (and no bra either!) any little lump or scar shows. Other than that I wear whatever I want.

September 30 – Some time has passed since the last entry and mostly we have been plugging along on the addition. We are still laying the block but have lintels in place so soon will begin the trusses and roofing process. Nice and normal. Last Tuesday I was lying in bed and my left breast was a bit sore. That is the breast that had the cancer. I started feeling around and lo and behold I found a lump! I about had a heart attack right then and there. It is down at the bottom of the breast in an area where they did leave some of my breast tissue. Then I told myself that it was probably just scar tissue but I needed to have it checked out. I finally got to sleep after routing out all the demons that tried to invade my mind! The next day was my monthly deep tissue massage (which, by the way is working so well – nary a sign of my dreadful back problem of last year!) and if you remember she is located in Dr. J’s offices (my plastic surgeon). After the massage we were talking out in the hallway and Dr. J comes along and joins our conversation. After a bit I told him about the lump and who gets me for that? Him as the plastic surgeon? Primary care? The general surgeon who did the mastectomy? He actually checked it out for me and I expected him to say it was just scar tissue but oh no – he said he felt it was probably scar tissue but that I needed to see my regular doctor and he would probably schedule an ultrasound test. He just couldn’t leave well enough alone now could he? He then says if they find something and it needs to be removed and they are nervous because it is so close to the implant that he can do the surgery. He then says to watch it for a month and if there are no changes then I can wait until my regular doctor appointment in November but if there are any changes then contact my doctor right away. Well…………..to my credit I did not faint but I can tell you the world stood still and I went into auto pilot. I thanked him for looking at it, told Melinda I would see her next month and off I went. I got to the car and then had a bit of a cry. Had to fight not to give in to a big ole’ crying session but I had other errands and needed my make-up to stay in place. I got home and didn’t say anything for all of that day to anyone, I had to let it sink in that it was a possibility although I really knew that when I first felt the lump. On Thursday I told my family and they were great, assuring me that it was probably just scar tissue but agreeing that I needed to have it checked out. Of course I could not sit around for a month letting it prey upon my mind. I called and made an appointment with my regular doctor, he did a full breast exam (he did make the comment that what they can do for reconstruction now is amazing!) and asked if I had silicone implants because that could be a slow leak. I told him mine were saline filled and that I had chosen saline filled implants because I felt they were safer. He said his sixth sense told him it was just scar tissue or a cyst but……………….based on my history he wanted to do an ultrasound and have me see a surgeon to be sure. So, the ultrasound is this afternoon and the surgeon is next Thursday and the week after that I leave to teach in Oregon for three days.

What am I thinking at this point? My brain is both numb and not thinking anything or it is whirling around with “What if it is back?” I am calm on the outside and going on about my business because no matter what I KNOW what can happen and that I can do it again if I have to. Of course I am praying for a cyst or scar tissue but I do not want to have my head in the sand and then have a rude awakening. I am playing the pessimist here – I would much rather be prepared for the worst and be happy when I am wrong! No Weeping Wanda or Ranting Rita, just Sorry Sandy feeling a bit sorry for herself.

This is all part of the ongoing journey through breast cancer. I guess the irony is that it is occurring right around the yearly breast cancer awareness campaign. So…………has everyone reading this had a mammogram? How about the men reading this or the men in your lives? I just read that breast cancer is on the rise in men and they attribute it to the rise in obesity in our country. Soapbox Sue is back!

October 1 – Got the ultrasound done yesterday and the radiologist repot was; “Indeterminate 0.9 x 0.8 x 1.1 cm nodule in the chest wall in the lower inner quadrant at site of the new palpable abnormality. Recommendation; Tissue diagnosis is recommended to exclude recurrence in the chest wall”. Well, poop!

October 6 - Went to see the surgeon today and I have to have the %$^#*&*^# lump removed. Wouldn't even consider a needle biopsy, said it was too close to the implant to be poking around with a long needle and that whatever it is needs to come out of there anyway.  Poor Polly Twin - more scars!  So on the 25th in I go to outpatient at the hospital to have it taken out (a lumpectomy) and sent to pathology.  Doctor feels it is scar tissue not a cyst but does not want it to stay there in any case.  Feel a bit better but do not like to go in for more surgery - that means IV's and I hate them!  

October 23 – Roller coaster emotions. As the day of surgery grows near I am getting very agitated and depressed. One minute I am fine and then I start to cry, you know the leaky kind of crying, not big outbursts or wailing, just the quiet folding in on yourself. Feelingverysorryformyself Francine is keeping me constant company these days. Even if it is scar tissue it still has been the round of doctors and tests and surgery and worry. So very similar to two years ago. It all stinks! I am angry, sad, mad, scared, nervous and resigned, all at the same time. Please, please, please, don’t tell a person in this situation “Not to worry, everything will be just fine!” You don’t know that. The doctor doesn’t even know that and it makes the person with the problem feel that you think the problem is not very significant and it really belittles and undermines the person’s mental state. Sorry………….it is significant as breast cancer can and does recur and if you are not worried about it you are off in la-la land somewhere! Soapbox Sue is on a roll here!

On a more positive note, I did go off to Oregon to teach, gone for five days, had a really good time and did not let the upcoming surgery get me down. Maybe I should have scheduled another trip before the surgery so I didn’t have any time to worry about it!

Nurse Martha is going to meet us at the hospital. She works at that hospital and knows everyone in the Rapid In and Out surgery. She will keep Harold company while I am in surgery. She is going to let everyone know that I am her darling sister and while we all know that should not make a bit of difference in your care we all know that it is, indeed, a little extra insurance!

Daughter Jaime sent me a card with a wonderful message – “I get up. I walk. I fall down…… Meanwhile I keep dancing.” (Renee Locks). I loved it – made me cry. Daughter Jennifer sent me a photo of the CNA insurance building in Chicago (she works for CNA here in Florida) with the windows lit up to form the breast cancer symbol. It is a very tall building and can be seen from a really long distance. Cried again! Many more messages of love and hope and prayers so no matter what – I will make it through.

You know this is just not about me – well it IS about me – but I mean it to be a record of the ongoing journey through breast cancer. It is fact not fiction and I cannot write my own happy ending. I can, however, control (mostly!) what is written on the pages of my life so I will go on with my life, my studio and my career and enjoy every minute of it (when I can get past the Feelingverysorryformyself Francine stage!).

I sent a fax to my oncologist letting him know what is happening and will have a copy of the biopsy sent to him, also. I see him for my two year check up on November 1 and go to the surgeon for Post-op on the 3 rd. Even if I wasn’t seeing him for a while I would have done that so he is in the loop. I send a fax because I am more certain he will receive it and that the words don’t get shortened or changed in the retelling of a message.

Still seeing Therapist Debbie. Just about the time I feel I could be done, something else (like a big, fat, ugly, ole’ lump!) comes up. I like the lifeline she offers. It is nice to have someone you can say anything at all to – no matter how outrageous! She has quit digging for a while – remember I told you she said therapy is like an onion and the layers keep getting peeled away? Well, we are at a point that I am very reluctant to peel away any more layers and I am in a holding pattern at present. I mostly talk about what is happening now and she is letting me have a breather! Those stupid ‘onion layers” make me cry and feel sad even though I know it has all been worthwhile.

Addition – Harold is working on the last wall today. We will be calling for an inspection next week and ordering the trusses to be completed. If/when we pass (I know we will, he has done an excellent job and if they gave marks he would get an A+!) we will schedule the pouring of the cells with cement and the setting of the straps and bolts (hurricane strength!) It is huge! I love it! I have my floor plan all drawn out with what goes where and I even can see the curtains at the windows! I came across a saying that fits me to a “T” – “Convinced she can do everything she ever dreamed of if she just had a little more space” (Brian Andreas)

October 24 – Done with all the Pre-op stuff. Did I mention we are in the middle of Hurricane Wilma as I prepare for surgery! I went in early for the Pre-op this morning as the weather was expected to deteriorate as the day progresses. It will be gone by tomorrow so surgery will be on time! The Pre-op nurse is a breast cancer survivor (4 years) and said she did not like to see me in there with a lump. We discussed surgeons, (she said the twins looked good as I got my EKG!), she doesn’t wear a bra either, and I found out that Nurse Martha was her nurse when she went through her surgery! She gave me a hug as I left and told me she would say a prayer for me tonight. How kind! I will call her to let her know the results of the pathology report since she has a vested interest in the results. No survivor likes to hear of a recurrence! She had chemo for a year and a half! Good grief! She was Her2Neu Positive which means that her cancer was aggressive. I was Her2Neu Negative thank heavens. That means my tumor was aggressive but contained in itself. Positive means that the cancer is aggressive outside itself, also. That is a very basic explanation but the best I can come up with! She also opted to have a bilateral mastectomy as I did and for the same reasons, to minimize the possibility of a recurrence.

October 26 – Whew! Surgery is over and I must say it was not bad at all. I have only taken Tylenol twice and the surgery area just feels like someone gave me a sharp jab with their elbow, no actual pain like you normally associate with a surgical site. The worst was getting the IV and that actually went well. Nurse Martha got permission to come back with me to the pre-op holding area (usually the place you are headed when they send your family to the surgical waiting room) so she was there to hold my hand and I wasn’t all alone with all those scary needles! I tell you, I am a big chicken at heart! Anyway, the nurse came in and I promptly told her that “It was always a problem getting an IV started on me and the last time I was there for surgery it took them five tries to get it started and I simply could not do that again!” She said they would not do that this time. Then in comes the anesthesiologist and his assistant and I answered all his questions, told him in the past I had extreme nausea after surgery but that the last couple of times I was fine so please use the same recipe. He said they would give me the “cocktail.” I also told him the same thing I told the nurse about the IV WHILE looking right into his eyes! He said, “Well maybe I will start it myself” and I said “Good!” and Nurse Martha said “That was our next sentence!” He whacked my arm, wrist and hand repeatedly and said “Well, I would not write home about your veins” and I said “I take that as a bad thing” and I told him I had been drinking copious amounts of water for the last four days and squeezing my red rubber ball every hour or so to pump up my veins and he said I had done all I could but that my veins have just been used up. Used up???????????????????????? Doesn’t that just bode well for the future!!!!!!!!!!!!!!!!!!! He did get it in the first try in the top of my hand and this morning I don’t even have a bruise! He also gave me a numbing shot after he decided where and before he started the IV. What a relief that was. Shortly they sent the first of the sedatives through and by then they could have cut off my legs and I wouldn’t have cared! Surgery took about 20 minutes (began at 8:30 after arriving at 5:30a.m.) so by 8:50 I was back in recovery and waking up! No nausea!!!!!!!!!!!! Before I forget the recipe/cocktail is Reglan – Zofran – Decadron. No idea what percentages of course, but it has worked every time for the last three surgeries. In the hospital after my mastectomy they also gave me Dilauid and I had no nausea for the days I was in the hospital either. Just passing on that wonderful “recipe!” Around 11:00 a.m. I got dressed, put on my ice pack and we left the hospital. Came home, had a sandwich and promptly went to sleep for the whole afternoon. Jen came over after work and fixed dinner and visited and I was just fine. Harold had to work last night and I watched a little TV, took tow more Tylenol and went straight back to sleep, slept all night and here I am! I will be able to call in the morning to get the results of the pathology report on the “mass.” He did not send any of it off for a frozen section to pathology and Nurse Martha says that is a good sign as they only do that if they are suspicious of what is there.

I haven’t seen the actual incision as yet, have to wait until the bandage strips fall off by themselves. I can see that he didn’t go back into the original mastectomy scar so there will be another scar on poor Polly Twin. Shouldn’t be very big though as the bandage is small. The nurse told me the “wound” was stitched from the inside so there was no wound care. Will have to investigate this further.

I am up early this morning as Harold is scheduled for a colonoscopy consult this morning. Might as well get him to join in all the fun! Just a routine for a baseline. He went for his yearly tests and his PSA counts are fine. I hope all of you reading this remember the guys, too, as they can get breast cancer as well as they other kinds and that mammograms, PSA tests and colonoscopies are not fun but they sure beat the alternatives!

A fun story. You know I love Halloween. Well, some of the neighbor kids are getting older and their parents told them they were too old to go trick or treating this year. They were over the other night to see all my inside Halloween decorations and we ended up talking about scary books and movies for about an hour. They asked if they could come to my house on Halloween and help me scare the kids! I said, “Of course!” Also, we have a standing date for next year. Universal Studios here puts on a great Halloween bash called Halloween Horror Nights and it really is scary. They turn both amusement parks into a Halloween paradise for horror junkies! I will drive and be the “responsible adult” (lordy, that is a scary thought!) and we are all going to go! Kids range from 14 to 16, two boys and a girl (have know them since they were little) and they all draw and two of them play musical instruments so I think that is what the connection is. This week we are all going out together to find me some new something scary for my Halloween night scare fest! What fun! After they left I was telling Harold how much I enjoyed them and that we talked art, books and movies and then I stopped and said, “Oh my! What does that say about me that I can discuss those things with teenagers but not with many adults!” Hmmmmmmmmmmmmmm. I lent out some books to them, scary ones of course, so now I am the lending library, too! I forgot how much I enjoy kids of that age. When my kids were that age there were always other kids at our house and it was nice having them back! So picture this…….me and a group of teenagers in Party City and Spencer’s looking for the scariest things we can find! I can’t wait! Even if I get bad news tomorrow it will not dampen my Halloween spirits! My grandkids also think the have a “cool gramma” and are going to come visit me for Halloween in 2007! I spent about 45 minutes on the phone talking to my grandson, Caleb, about all the scary things I do for Halloween. That is the longest phone conversation we have ever had! Jaime finally had to drag him away to go to bed. I was telling him about something, can’t remember just what, and there was no response at all and I thought he had given up the phone and was gone and then I heard him say, “Whoa!” slowly, like he was in awe of whatever I had been saying and it took him a bit to take it all in! I will have to write about what I end up doing with the neighbor kids and how many kids we scared, you know I have to beat my quota every year! Mind you, Jennifer dresses up scary and comes over every year to help me so I am passing on my passion for Halloween to all generations!

October 27 – Well today is D-Day. I am going to wait until around 11:00 to call the doctor’s office so hopefully they have the results ready. Now I am almost afraid to call. I feel so good and surgery went so well…………………I am going to help Harold work on the last wall of the addition until I make the call. I think to prove that no matter what the outcome is, I can do it!

I must tell you I made Harold a bit annoyed the night before surgery. The house HAD to be clean and the vacuuming HAD to be done. I know it was just minor surgery but it involved anesthesia and there is always a risk with any surgery so………………in case something dreadful happened, my house was clean! I didn’t tell him that of course, no point in worrying him any further. Having been with Therapist Debbie for so long I know that this is a control issue. I can’t control the threat of a recurrence but I can control other aspects of my life. So I was relaxed about my obsession even as I was being obsessive!!!!!!!!!!!!!!!! See, I have come a long way!!!!!!!!!!!!!!!!!

Afternoon of October 27 - Aaaaarrrrrgggggghhhhh!!!!!!!!!!!!!!!!!!!!!! No results today! They said if no one has called me by two o’clock tomorrow to call them! My skin is beginning to feel too small for my body! Going to jump right out of it soon! I am telling myself that if it was not high priority it is good news! Unfortunately I don’t think it is working! I want to KNOW NOW!

October 31 – No results on Friday either. The nurse said it usually takes four to five days and if she hadn’t called me five p.m. that it would be Monday. She didn’t call and it is Monday at four a.m.! I was getting myself all worked up on Friday because of THE WAITING and caught myself with my nostrils flared (sure sign of impending anxiety) and just gave it up and got in bed and pulled the covers up over my head. Came out for air after a bit and then just went to sleep for a couple of hours. I actually felt better after that episode. I sure hope this lump business doesn’t happen again. It is like everything came to a screeching halt – again – until the all clear is given today. See, I am thinking positively!

Weekend was fine, (guess I finally accepted I just wasn’t going to know until Monday) I took the neighbor kids Halloween shopping on Saturday night and we got really scary stuff for tonight. Spent yesterday erecting an entrance to my driveway guaranteed to scare the living daylights out of a lot of kids! Even Harold got in on it built part of it and then took the blade off his chain saw so one of the boys can go around making dreadful noises with it (only for groups of kids over eleven or so, I do have my limits!) Had all the neighbors in and out all day seeing all the decorations inside as well as what we were constructing outside. Cars have been either slowing down or stopping all day to see what was happening! Great fun!

Halloween night – the whole production was a great success! I want to get this out so will post photos in later updates.

Love,

Margot a.k.a Soapbox Sue, Feelingverysorryformyself Francine

Update 53

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