Margot Update 6

September 12 - Here is a bit of leftover information from the visit to the oncologist. Had my Estrogen/Progesterone Receptor tests been positive instead of negative - I would have walked out of his office with a prescription for Tamoxifen that I would have had to take for five years instead of having to have chemo. I mention this because someone said to me that I was lucky I only had to have four treatments of chemo. Sarcastic Sally was ready to say, "If I am so lucky then you go and have those dreadful treatments and all those crappy side effects!" Of course, I stuffed her back down into place before she could say that out loud - the person was actually happy for me that I only had to have four but at this point I do not feel "lucky" at all! So, don't anybody tell me how lucky I am until I say I'm lucky first or Sarcastic Sally will bite your head off!

Having gotten that out of my system………I do want you all to know that I do not have a split - personality disorder, I have always made up names like that for different situations - Greta Gardener, Holly Homemaker, Weepy Wanda, etc., depends on what is happening. Or, on the other hand, maybe I HAVE always had a personality disorder!!!!!!!!!!!!! Really, I do not go around mumbling to myself like Sybil!

Today was fill day. 60cc in the right one and only 30cc in the left. The left side is where they took the lymph nodes and is still sore, feels like a tight rubber band across my chest muscle. That is also the arm that has been babied because of the lymph node removal so I need to exercise it a bit more to loosen up my muscle before he can even out the fills. He wouldn't tell me how much he was putting in, I have to tell him when I feel pressure. He told me I gave him gas when he could only put 30cc in the left side. He says that as he is rolling his eyes! Harold went with me this time so he can see what is happening when I get a fill. I have to hold the bag of saline as Dr. J is filling and Harold offered to hold it for me but Dr.J said no, he didn't want to spoil me! Didn't hurt this time afterwards, just tight. Skin is still sore though, he says it is just my skin, nothing to do about it except wait it out -oh yea! I have found though, that if I wear the satin camisoles inside out so the satin side is next to my skin it really feels good. Of course, I cannot take off my jacket or people will be forced to tell me my shirt is on inside out and then I would have to go into a lengthy explanation! Saw an expander today. Kept forgetting ask to see one. Not what I described to you at all previously! It looks like a flat, deflated, thick rubber, orange with a metal mesh port inside! It is pale yellow. Cripes, now wonder it hurts to have that between my chest muscles - even empty it looks uncomfortable! I see why I can feel the edges though, until it is more rounded out the edges are like a double layer of rubber under my skin.

Dr. Portoghese's (general surgeon) office called and I have to get the chemo port installed surgically on Monday morning! Not looking forward to that I must say! More anesthesia, IV's, blood work………..groan!

September 13 - Had a friend over all day, brought me goodies for when I am feeling poorly from the chemo. She knows, as her brother went through it a couple of years ago. Worrying a bit about that chemo port surgery.

September 14 - Well, Weepy Wanda was in full possession today! Just sobbed all morning, Harold was helping Jennifer move so I was here by myself and I just let loose. I guess everything came up in my face. Another surgery in the morning, chemo begins on the 24th. The mastectomy surgery was different. They took out the cancer, a good thing, hurt like hell, scars left that heal. Visible signs of something. Reconstruction, again very sore, but a happy ending, perky boobs! Chemo port surgery will hurt and it is in place so they can do mean things to me! Nothing visible at the end of the treatments, just hope and you can't see that. Not even sure that I need the chemo treatments but too afraid not to have them thus possibly giving the wretched cancer a chance to return. So, Weepy Wanda just took over completely. Nurse Martha, her daughter and grandson took me birthday shopping and out to lunch so I pulled myself together for that as good as I could but they knew I was very down. We still had a nice time as I stuffed ole' Wanda way down far! Came home and Harold and Jen were cooking dinner, they could tell I was not myself. Harold came right out and asked me if I was okay and…… Weepy Wanda started out and then Ranting Rita just leaped out and started, well, ranting! Jennifer and Harold just stood there for a moment and then Harold put his arms around me and then Jen joined the hug and we all cried. They were so good, they did not tell me that things would be fine, or to calm down or anything like that. They just let me rant on and get it all out which is exactly what I needed to do. When I finished weeping/ranting, I dried my eyes and asked them if dinner was ready! Was actually able to go to bed and sleep when I had thought I would be up all night so I would not have to think about the surgery in the morning.

September 15 - Have another port in now, under my skin, up under my right collarbone. Haven't seen it yet as the bandages are still on but I know it is the size of a fifty cent piece with a piece of tubing sticking out that was inserted in my vein. They can now take blood and give me the chemo treatments without having to go into my veins on my arms each time. I believe it will stay there until the actual implant surgery and then Dr.J. will remove it then. Actual surgery wasn't too bad, that only lasted about 15 minutes, then they woke me up and took a chest X-ray to be sure it was in the right place before leaving surgery. I had twilight anesthesia so wasn't under as far as I was for the mastectomies. Worst part was the anesthesia tech took five tries to get the IV in!!!!!!!!!!!!!! We got to the hospital at 7:30 a.m. and left at 1 p.m. Came home, had some lunch and went to sleep! Pain not too bad, took pain pills just in case and have to keep ice on the surgery site for the first 24 hours. Have to keep it dry for 48 hours so Harold had to wipe the gallon or so of Betadine that was all over me! Even in my hair!

September 16 - Could not sleep at all last night! Must be the pain pills doing that again. Laid in the recliner so the ice pack stayed in place. Don't feel tired though since I just rested there in the dark. Pain not too bad, the bandage just feels tight. Lazy day, just resting until getting ready to go to a New Patient Chemo Seminar for patients and their families back at the hospital. Harold and Jen went, too. Very informative. They gave out tons of literature, went over 30 slides and spoke about al the possible side effects. Every patient got a kit of goodies. A digital thermometer as you have to take your temperature every single day and report anything over 100.5 immediately to them. A portable tape cassette along with a meditation tape for whenever you needed calming and for use during the treatment. Samples of high protein drinks to keep your body better prepared to fight all this. I think I have the basics down but will pass the real stuff on to you as it happens so I don't give out wrong information. We will call it Chemo 101 and I will include snippets in my updates. I am in info overload at the moment! Looks like for every bad thing the chemo causes they have something that will help but still looks like a scary thing to me! I don't mind telling you all that I am very, very afraid of this next segment of my journey through breast cancer and could use an extra prayer or two! Not much into pain and suffering especially when it involves me! Sorry, the old bad with the good thing! I did meet an older woman tonight that had her first chemo treatment two weeks ago and she looked and sounded fine so that was encouraging. Of course, her hair was beginning to come out! Really not looking forward to that even though I joke about the different wigs. I'm sure I will be fine once it happens and it is gone, but the anticipation will be dreadful. I am so very vain about my hair! Isn't that one of the seven deadly sins???????????

September 17 - Slept good last night, took the main bandages off this morning from the port surgery and there is just a slight swelling and an incision about an inch and a half long held together with Steri-strips. Can't tell if I have any stitches, didn't think to ask! Sore but as long a movement is not quick, I am doing okay. Going to try and be productive today and tomorrow as I get filled again on Friday and along with the port surgery might be a bit much to expect to feel great the next day!

Great news! Harold is now a college student at Seminole Community College. He is changing careers and is going to school to be a Fire Safety Inspector. He has been installing the fire sprinkler systems in new commercial construction like convention centers, fitness centers and hotels. When he finishes school, HE will be person who was inspecting his work before! He doesn't have to go every day so we can still work in all my various doctor visits in.

September 18 - Well, so much for productivity! About 1 p.m. I was in the chair for a nap! Had to remind myself that it was only Monday I had the port surgery. I do tend to be a tad impatient!

Since I feel basically the same as yesterday I decided to use my space for today as info time. I want to talk a bit about lymphedema, a possible complication from having lymph nodes removed. Right now, to you, it is probably just a word that I have used before so I figured I would do some explaining so you all understand what is involved and why it is important to watch for it. Can't help it, it is the teacher in me!!!!!!!!! Since they did remove nine lymph nodes from under my left arm and they are never going to grow back, I will have to make certain changes in how I do things. What is lymphedema? Lymphedema is defined as a condition in which excess lymph (fluid) collects in tissues and causes swelling due to the loss of the lymph nodes from surgery to carry off that excess fluid. Basically it is a plumbing problem in the body. Normally the lymph fluid (which is a colorless fluid that travels through the lymphatic system and carries cells that help fight infection and disease) is carried through the lymph vessels passes through the lymph nodes and gets dumped back into the bloodstream near the heart. The lymph nodes themselves are small, bean-shaped organs located along the channels of the lymphatic system. The lymph nodes store special cells that can trap bacteria or cancer cells traveling through the body in the lymph fluid. Clusters of lymph nodes are found under the arms, in the groin area, neck, chest and abdomen. Most everyone has had swollen lymph glands at some point. Having surgery can cause scarring so some of the holes are blocked and the drainage system cannot work as efficiently as it did before. The fluid doesn't drain out as well as it needs to and everything backs up and swells. There are different stages and I am in the first one and intend to stay there! My arm is not swollen but as a result of the surgery there is a reduced capacity for transporting the lymph fluid. As long as there are not undue stresses on the system all should be well. The first change I made was to switch to a deodorant with no anti-perspirant. There are a few out there. Don't want to block the flow of lymphatic fluids in any way. No tight cuffs, I have to wear my watch on the other wrist from now on, no tight rings or bracelets, have to wear my shoulder purse on my right shoulder, no carrying anything for a long period of time (like a briefcase) with my left arm hanging down, should not even pull a heavy suitcase with that arm, no heavy lifting - nothing over 15 lbs. Need to wear a compression sleeve when I fly. Wear gloves when I garden to prevent infection, don't get sunburned, keep skin lotion on so to keep skin from drying and cracking allowing infection to get in. This has nothing to do with the chemo and it is forever. I will be a very good girl about all of this since I know someone who has lymphedema in her leg and I have seen and heard what she has to endure. It ain't very nice! I mention all this because I have had quite a few people think that all that is only temporary and when I am better I will be back to normal. Well, I will be back to normal but my "normal" is changing! All that new stuff is my normal now. No pity party needed, there is nothing that cannot be accommodated quite easily and it just "is" the way things are. I mean - I can now say to someone that wants me to carry something for them, "Sorry, that is too heavy for me," and not feel the least bit guilty!!!!!!!!!!!!!! What freedom!

Go get a another fill tomorrow and will go shopping on Tuesday with Nurse Martha for wigs or to be medically correct, "cranial prosthesis'." She has one she is going to lend me that is a pageboy with little microbraids on the top layer and a headband, sort of reddish brown. I will have to photograph myself in all my different personas. Definitely looking for a red curly one and I will stay with synthetic hair as I do not want to bother caring for a human hair wig. Want to wash and wear!

Love to you all,

Margot (Still a member of the IBTC and also now I think I could also belong to the Rough Terrain Chest Club! Looking a bit odd at this point!)

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