January 9 – Just got up and I hurt everywhere! My shoulder hurts from the Shingles, Dolly (right breast) hurts from scar tissue buildup and my knee is killing me! Complaining Clara is here with bells on! Just had to get that out of the way! This Shingles junk is for the birds. I have cut back on the nerve medicine, Neurontin, because it makes me so dizzy and drowsy and am trying to cut back on the use of the Lidocaine patches at night just because it doesn’t seem healthy to wear one every single night. May have to go back to my nightly patch though as I am very uncomfortable this morning. My upper arm still itches but when I scratch the skin feels numb and the itch is still there. Hope this junk does not hang out forever! Sheila Shingles is not a welcome guest at all!!!!
Have an appointment next week with my plastic surgeon to see what is going on with Dolly. Polly is just fine but I finally had to admit that Dolly was growing and getting a bit hard! I kept saying to myself that she was always a bit bigger anyway so after Polly’s lumpectomy for the second cancer she got a bit smaller. Also, they didn’t take as much tissue to begin with from the right side as both cancers have been on the left. Or, I am right handed so maybe my muscles are larger on that side – they were covered up before when I had “real” breasts so who knew if one was larger than the other? The other day I had on a shirt and Dolly kept pulling it over to the right since now she is the strongest twin! When I look down at my chest I can see that there is a difference. Scar tissue that encapsulates the implant is a known possible problem with implants. Seems like it has really taken off in the last couple of months though and she is getting hard as a rock! I can’t remember exactly what happens with the scar tissue, if he just goes in and scrapes it off or if I have to get a new implant after he removes the scar tissue – I will find out next week. I do have a lifetime warranty on the implants though, sort of like tires! I have to get the chemo port taken out and if I need surgery to remove the scar tissue he can do both at the same time and I will only have to have one surgery. I like that!
Don’t know about the knee – feels like someone twisted my leg around backwards as I was sleeping! I have to go out today and get my chemo port flushed (must do that every six to eight weeks to prevent infections) and then I get to go to a new CPA and let him see my messy bookkeeping! What a fun day!
Have a PET scan at the end of the month and a brain scan next month. Oh yea! The fun just never ends. (I think Cynical Cynthia has just joined the party!)
On a more positive note – I am really enjoying being in my new studio. The old one looks like a tornado has gone through there as anything I don’t want anymore is on the floor in a big pile and I only bring the stuff I really want out here if it has a place. Harold still has to build me paint racks and bookcases and he is trying to set his own shop up so things will be in turmoil for awhile but what a fun turmoil! We have been tearing our hair out trying to figure out what flooring to put in the new den and kitchen and finally on Sunday it hit me – I am going to paint the concrete to look like old cobblestone bricks! I can do a small portion at a time so I don’t have to do the whole floor at once and we can keep the floor in the kitchen for awhile longer. All those nicks in the concrete slab will be a plus now. I may have to add some more! As I work it will look like we are removing the concrete to expose the bricks beneath! Since both doors from that room go out onto my paved patios and courtyards it is perfect! The den is not a high priority as it was our bonus room anyway. The main purpose for the addition was a workshop for Harold and a studio for me. Harold is settling right in. He bought “manly” cabinets and workbenches and Jen bought him a small refrigerator to go out there. He has a TV so he is quite happy. When we replace our old den furniture he will take his favorite recliner out there, too. One good thing – if I get really mad at him he doesn’t even have to leave home!
January 15 – Well, Steroid Stella (a.k.a. Dolly of the Perky Twins) has her appointment with Dr. J on Thursday to see what in the world she is up to! I swear, she is what an implant looks like on steroids! Maybe all those steroids I had to take for chemo and then for the radiation pneumonitis and then for the ears and then for the Shingles finally got to her. Of course, if that were true what happened to Polly? She is the same size she always was except for the area of that last lumpectomy. Dug out all my warranty info so I have it handy although it should be in my file.
Whatever was going on with my knee is still hanging about just a bit but never as bad as the day I had to drag it around with me! I am going to give walking a try in the morning to see how it does. I do have arthritis in that knee so I would imagine that someday I will be looking at a knee replacement. More fun.
Shingles are winding down, finally! I stopped all medication two days ago and have only taken Tylenol once so far. The areas itch mostly and ache a bit by the end of the day but I feel so much better not taking the Neurontin. At least during the day – I was just bragging to Harold about how well I had been sleeping lately and the first night I did not take the Neurontin I was awake all night!!!!!!!!!!!!!! I guess it was contributing quite a bit to my good sleep! Last night was better and I hope that tonight I will be back to my “normal” sleep patterns whatever they are. It has been so long that I have forgotten! Seriously, I am good with 6 ½ to 7 hours of uninterrupted sleep. I feel much more like myself without the medication but would have been so miserable trying to get over the Shingles without it so it was all worth it. Stopped the Lidocaine patch, too. It felt great as long as it was on my skin but then I itched and rubbed for about an hour after it came off. Skin is still a bit numb on my back but I can handle that. Almost two months messing with this stuff! Shingles Sheila is on her way out the door though, hopefully never to darken my door again!
I have started to ease off on the Senna-S stool softener tablets. Luckily as soon as I stop taking whatever medication is causing constipation things get back to “normal” quite soon. These are still part of the 700 tablets the pharmacist got for me while I was on chemo! Obviously they are not habit forming!
Gotta call for a haircut tomorrow. Just a trim and to touch up those Silver Fox Serena roots! Looks to me like when the ends are trimmed I will be straight as a board again! Drats! I had hoped for just a bit of curl. So, once again, I put in my order for red and curly but got straight and grey again! Someone is not paying attention!
I heard this on a commercial the other night and it really caught my attention. My head was down looking at a magazine and when I heard this, my head snapped right up! It was an ad for a medication of some sort but what it said was, “ Okay, that’s who you were before. Who are you going to be now?” Wow! Having a life threatening disease does change your priorities and makes you think about stuff but that statement pretty well summed it right up! My skin actually prickled when I heard those words!
January 17 – I am grouchy today. Grouchy Greta, that’s me. Everything seems to hurt today. My knee, shingles areas, boobs, back and I even have a headache. Lucinda Faye was trying her best to get me last night even with the quinine pill! I have no energy and I am out of shape. I have to have a PET scan in a week or so and a brain scan within a month to check how I am doing. I hate those things. Good thing Harold is at work today or he would be out in his new shop all day just to avoid me! I finally slept last night for the most part. I took a hot shower, then a mineral Jacuzzi bath (I had to shower first you know, it is like rinsing the dishes before putting them in the dishwasher!), then a cup of hot milk with decaf and sugar free coffee stuff in it and then watched TV until I was really sleepy. What is the deal with the sleep anyway! This is when I get really annoyed. Since I am done with all treatment I want to be done with all side effects, too! I have to keep telling myself that it took a year an a half last time until I felt like my old self and I only had four treatments over three months with no radiation and no Herceptin that made treatment last for a whole year. Tomorrow I go in the morning for a dental cleaning (always high on my list of fun things to do!) and then in the afternoon I see Dr. J. to find out what is going on with Steroid Stella! I KNOW I have to get the port taken out and I KNEW that scar tissue build-up was a distinct possibility but I am so tired of having to schedule surgery or treatment of some kind around my life! It is depressing! I warned you – Grouchy Greta is in fighting mode!
A friend sent me this link last night and I had to go get the box of tissues to finish watching it. My, oh my! It was really touching and moving and brutal all at the same time. I highly recommend it but have the box of tissues handy first! www.thesurvivormovie.com is the link. I have joined the Cancer Crusade that made the movie and will report on what it is all about as I find out myself. I was sitting there sniffling watching it and Harold came up behind me and asked if I was okay. I told him about the movie and he looked at me and told me that Benny Parsons had just died of lung cancer. He is a legend in the NASCAR world and just a few weeks ago another driver had died of cancer. Well…………………I bawled all through preparing dinner! I cried for me and for them and for their families and for my family. Getting all misty eyed right now as I am typing. Not that I knew either of those men but I had heard their names for years because Harold watches racing and we both know first hand about battling cancer. Cripes! Now Weepy Wanda has joined in!
January 18 – You are not going to believe this! I was getting my teeth cleaned and one of my crowns came loose – right there at the dentist’s office! Good grief! I thought I felt something and then a minute or so later the tech said that she thought it had come loose. It was hanging on by just a bit of glue. She finished her work and then the dentist yanked it all the way out and re-glued it back in for me. They had taken my yearly X-rays so he could see that there was no decay or damage – thank heavens! So, was it bad luck that it came loose at all or good luck that if it was going to come loose it did it there! I just kept thinking, Geez Louise, will the fun never end with me! I just came in for a simple cleaning!
January 29 – About time for a catch-up. Tomorrow I go for my PET scan that is just to compare with the last one and to be certain (as certain as is possible anyway) that all is well. I must say that Incredulous Inez is having a bit of a problem with their prep instructions! I have had this test before so I knew that I had to be quiet today, no physical activity for twenty-four hours before the test which begins at 8:00 a.m. tomorrow. They have some new rules this time. I have to fast after midnight (can’t actually remember if I had to do that the last time in November of 2005) but get this – I have to drink a half a gallon of water before I go for the test! Now, drinking the water is not the problem – it is what to do with the “excess liquid” created from downing a half a gallon of water while you are supposed to be resting for 45 minutes before the test in a recliner and then lying on a table for the next 50 minutes perfectly still! I called them this morning to be sure the doctor’s office wrote the instructions down correctly because that did not make sense to me. Of course the other alternative was to get up during the night to drink all that water and then to get up during the night to get rid of it! Nope! Instructions were right, as a matter of fact they would like you to start drinking the water about an hour before you get there. I told her that on a regular day I would have to go to the bathroom a lot just because it was morning let alone drinking that much water! She said I could get up during the recliner resting time to go if I had to but they really needed me to be perfectly still during the actual PET scan or they would have to start over. I told her that took us back to the beginning about having to drink so much water and then expecting you to be still! I asked why that much water was needed at that time and she said it made the isotope injection easier and the test results came out better when the patient’s organs are “plumped up” with water. Oh, this is going to be fun – I will be starving (maybe not, with that much water in me!) and trying to not think about having to go to the bathroom which will of course make me have to go every five minutes!!!!!!!!!!!!!!!!!!!! They want you to rest and relax in that nice recliner with a blanket before your test - so cozy, right? Excuse me, I will have been injected with some sort of isotope junk, I will have a full bladder and I will be stressing about having to go to the bathroom – which all makes for instant relaxation, right?
More good news today. The insurance company has denied my request to have the implant replaced. I read over the document and I think someone did not really look at my information because it sounds like they think I just had cosmetic implant surgery and complications from that are not covered. I will give the doctor’s office a few days to get their letter and see if they can straighten it all out. Cripes. I don’t like having to have the surgery in the first place and it adds insult to injury to have it denied. I know they have to approve it as it was definitely not for “cosmetic reasons” but what a pain in the butt in the mean time! Meanwhile I continue take the Vitamin E and to massage and dig all around that implant every day and it is getting a bit sore. No noticeable improvement yet but it is still very early for that anyway.
On to more positive stuff! We had our Open House yesterday to show off all our hard work from the past two years. It was great! I gave “tours” all day! Of course, bought way too much food so we will be having sandwiches for quite awhile but it was great fun. Everyone did all the proper “oooing” and “aaahhhing” right on cue! Even the weather was perfect! We still have all the woodwork to put in, flooring in the den and kitchen (gave up on the idea of the stenciled cobblestones – what was I thinking! – all that crawling around on my knees!) and all the built in furniture that Harold will design. We did get my huge paint rack up before the Open House, not all the way finished but it holds the paint! I do work for a lot of different companies and I need to be able to see the products and colors when I am designing. They are grouped together by company and then by colors. Ooooo……. I love to be organized!
Aside from the upcoming PET scan and possible surgery I am feeling pretty good. I see my oncologist on February 7th for my three month check-up and have a few questions to ask. Mainly why my fingernails are peeling and why I still tire so easily. April will be a year since I finished chemo. I expect he will tell me that it will take me longer this time to regain my strength and I am going to be sixty this year so maybe I won’t get back all the way with the combination of age and the year long treatment. Will I be upset? No, I’m still here to complain about it and I have way too many gardening projects, house projects, creative projects and work to do! It may just take me a bit longer to do it! Still taking the quinine at night. Lucinda Faye tries to sneak in every once in awhile but Quinine Kerrie fights her off. In believe that she is related to Kerrie Kickass – they have the same temperament!
A while ago I was feeling a bit depressed, I think Grouchy Greta had been visiting a bit too long, and I was lying in bed thinking about it and all of a sudden I thought to myself, “I am tired of being the victim here. I mean, really, really, tired of being the victim. I am done.” I immediately began to feel better. I still hurt from my knee and Dolly is still very uncomfortable and I itch from the shingles but, so what, none of it has to stop me from doing what I want. Hey, I do not have to get treatments every three weeks anymore and even though I have a lot of tests and a surgery coming up they are just tests, not treatments, and surgery heals. Oh dear, I must stop or Pollyanna will just take right on over!
January 31 – What a dreadful day I had yesterday! I drank all that water before the PET scan and I will NOT do that again! I ended up having a panic attack while in the machine and I think it was because I was so worried about having to go to the bathroom because of all that water I had to drink! I arrived for my appointment and of course, had to go to the bathroom first! She gave me the injection, no problem there and then I had to go to the bathroom again before I settled in for the 45 minute nap. About 30 minutes into the rest I had to go AGAIN! I did manage to wait the full 45 minutes but I ended up hurrying down the hallway to the bathroom! On to the table for the scan. She tells me it will last for 52 minutes and I have to be perfectly still. She propped my knees up, strapped my arms to my chest and my head to the table and the test began. Every 8 minutes it moves you further into the machine. I could see the timer counting down so I know that about 20 minutes into the test – guess what? – I had to go to the bathroom!!!!!!!!!!!!!!!!!!! I kept talking to myself and trying to think of other things because if you stop the test for any reason you have to start over at the very beginning! After I passed 32 minutes I began to think I would make it then the urge became stronger. I thought, “What if I lose control from having to go so badly? Or what if when I stand up I lose control, or if I can’t make it down the hall to the bathroom. I was becoming obsessed with the whole idea of losing control because my poor body was screaming at this point to get to the bathroom! How embarrassing would that be to have that happen????????????????? Then……………….the machine moved me inside the opening and I couldn’t see out anymore. It is probably about a three foot tunnel that you are in and I could see light out the other end. I had this test a year ago and while I didn’t like it I did just fine. Then it moved my head further in. I really, really, really have to go to the bathroom really bad at this point. I kept thinking it has to end soon since it was about 45 minutes when I lost sight of the timer. Then all gets quiet……………………..Now I begin to think that they are going to come in any second and then it doesn’t happen. Then I begin to think that they are with someone else and are just letting me stay there until they are finished and that I am going to wet the table if they don’t get in there soon! Then……….I look up at the top of the tunnel and it hits me like a ton of bricks that I CANNOT get out without someone letting me out!!!!!!!!!!!!!!!!!!!!!! There is no room to maneuver your body and of course I am strapped in! Now I feel my heart begin to pound and I know I am about to have a panic attack. I kept telling myself that I HAD to be calm. I felt my resolve slipping badly and said, “Can anybody hear me?” No answer. I said it again a bit louder. Still no answer. Okay, now I am in a full panic mode and I begin to shout, “Someone! Somebody! I need someone in here now!” It seemed like an hour before someone came running in and she told me she thought it was someone else so had gone there first. I told her I was beginning to panic and I had to go to the bathroom now! She said I only had a little over a minute to go and if we stopped I would have to start over again. Lordy!!!!!!!!!!!!!!! She asked if I could just hang on a bit longer and that she would stay right there and bring me out the second I was done so I started to count to myself - one one thousand, two one thousand, three one thousand……………..Finally it ended and I began to come out. As soon as I was free of the tunnel I started to undo myself and tried to get off the table and she said I was still too high in the air.. I told her I had to get to the bathroom and slid off the table. Well…………………my feet felt like they were squishy bags of water and I could hardly stand and she said I had to be careful since I had been lying down for so long and I said – I HAVE TO GET TO THE BATHROOM! Did she not hear me the last fifty times I said that?????????????????????????? I made it, just barely, but I did make it. I got back to the room and she said I was done and to have a good afternoon. I did not answer and left the building. I had been fasting so I went to get something to eat before I ran errands and as soon as I ordered and the waitress brought my coffee it all hit me and if I had been alone I would have burst into tears and screamed at the top of my lungs. I was really having a tough time holding it all together and when she came to refill my coffee I just waved her away. She asked me later if I was okay. By then I had calmed down. I believe it was the panic about having to go to the bathroom that brought that whole episode on. I see my oncologist on February 7th and will tell him about it. I have to have a brain scan next month and I think I may ask for a Valium and get Jen or Harold to come with me and stay in the room with me. I have never had a panic attack before and I don’t ever want to have one again! I did not like that! None of the other personas liked that either! Kerrie Kickass went and hid somewhere and she isn’t afraid of anything! No more water for me before a long test. Period.
Photo of the Week. Click on it for a larger view. Okay, let’s move on to something more fun. Be warned I am going to drag this out so you have something to look forward to when a new update arrives. This is a photo of the door that leads from the den to the studio. The curtain (lace of course!) is to soften the view since it will NEVER be completely neat in there ever again in my entire life! We used an outdoor door frame so there is weather stripping all around the edges which cuts down on the sound coming from the den or from the studio. Harold and I can watch TV on different stations and not bother each other. Note the lovely concrete floor. Someday we will decide what we want there but priorities are to finish the studio first. I want fancy woodwork so that will have to wait, too. The table has to stay for awhile, it is awkward but I need an island built before I can get rid of it! Note the end of the wood cabinet on the right and the end of the door on the left. That is where the house used to stop, there were sliding glass doors out onto the patio before. Next time you get to see what is on the other side of the door! Anticipation!
It is February 11 as I am sending this out and a bunch of stuff has happened so I will be sending another update very soon to play catch-up.
Margot a.k.a Perky Polly (Keeper of the normally perky twins but now carrying around Steroid Stella), Complaining Clara, Sheila Shingles, Cynical Cynthia, Silver Fox Serena, Grouchy Greta, Lucinda Faye, Weepy Wanda, Quinine Kerrie, Kerrie Kickass and Pollyanna
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