November 15 – Day of Contemplation yesterday. I saw Therapist Debbie and we had a really great discussion about breast cancer and its effect on your entire life for the rest of your life. It began by my telling her that my darling Harold was baffled by my tears on the last day of treatment and when I was telling him the other day about all the tests I need done, (rib X-ray this week, port flush beginning of January, PET scan at the end of January, brain scan in February, oncology appointment with blood work in February) and having to go back to the hospital to have the port removed he looked a bit stunned and said, “I thought you were done?” When I told him I was only “done” with the actual treatment phase, now we move into the testing phase and then on into the waiting phase and hopefully, in time, into the permanent remission phase. He looked very sober. He wants so badly for me to be “done” with all of this and it is truly a very sobering thing to realize you are never “done” with cancer, you just move into the next phase. Therapist Debbie and I talked the whole hour over that phenomenon as she is a breast cancer survivor of six years and knows exactly what I am talking about. It is good to have someone to talk to who really, truly, knows what you are feeling and who validates those feelings as being very real and not the least bit paranoid.
The rest of the day I just thought about stuff. With all the construction going on here at my house I feel it fits perfectly with how I feel about my life. There are bits of construction stuff all over the place and everything is very disorganized. I will need to spend a good bit of time clearing out the old stuff before moving it into the new addition and cleaning and just picking up discarded stuff to see if it still has some use before throwing it away. The parallels were astounding when I really thought about them. I feel like I have to find all the parts of my life that were thrown aside during this past year of treatments and look at them to see if I want them back in my new life or if it is time for them to be discarded and if I keep them to find a permanent place for them. Being a very visual person I can “see” them as bits of stuff lying around in my minds landscape. I need to clear out unnecessary stuff from my life and only keep what is really important. I did this the first time I had breast cancer but really need to cut down even more this time and concentrate on what is really, really important to me. I feel like I am getting a new house and a new life and it is a good feeling. I feel like I am shedding my old skin and being renewed. I must say that is a great feeling after being so depressed this past year. Not all the time but much more so than the first time. I know I have said that this recurrence was much harder to deal with mentally than physically. I hope some of this makes sense as it is so hard to actually convey feelings. Okay, Contemplative Corrine is done for today.
Going on Saturday for a “sassy” haircut (not a trim, mind you – a real haircut and style!) and maybe some “jazzy” color! Think maybe I need to leave the color to a professional for awhile! She knows about the Raspberry/Fuchsia colors! She is Jen’s stylist and we are both going on Saturday! How fun!
Stucco guy is moving along nicely, not sure if we will have time to paint the outside or if I will have to move my plants back in place on the patios for the holidays and wait to paint the outside in the Spring. If the drywall guys would come and finish their sanding we could get on with the painting inside. Ordered the carpet tiles for the studio and am ordering curtains for the studio today! Whoo-ee! It is getting close when you order flooring and curtains!
Putting up my Village Tree this year for my grandkids. You know, all those lighted houses you see around the holidays. Harold built me a set of shelves that are round and look like an empty Christmas tree shape when they are up. It is about ten feet tall so I spend a good bit of time on a ladder! All the houses and trees and people get arranged on them and the whole thing is pretty cool. I will post a photo when I am done. I have to start now as it takes forever to complete it (Geez, more construction!) and I am losing some time with the two more trips I need to make before Christmas. I must be ready to impress the grandkids when they get here! How fun Christmas will be this year with everyone here. Jaime and her family, her mother-in-law and sister-in-law will all be staying here with us and Jen and Nurse Martha and her family will come over so we will have a houseful! I am so glad I feel up to it! Life is good!
November 17 – Things are looking up! Went to the podiatrist today and since the leg cramps have subsided, thanks to the Quinine Sulfate, I don’t need to see him anymore unless I have a problem. One more doctor visit crossed off the list! Down to seeing the Radiation Oncologist every four months and my regular oncologist every three months. Moving right along! My ears are clearing up finally – I believe it was just too much ear wax all along! I think my regular doctor overreacted with all the antibiotics and decongestants because they did absolutely nothing. When I saw my oncologist and asked them to check my ears and the nurse said all she saw was wax and my ears still felt clogged……well……….I bought some over the counter ear wax stuff and……lo and behold…………my ears are getting much better!
Now just dealing with regular aches and pains associated with age! Especially from climbing up and down a ladder to paint. Yes! Paint! Actually dry wall primer – tons of it! We put in about three hours last night and had to give up. My, there is a lot of wall and ceiling space in that whole addition! I am also still cleaning dropped splats of drywall from the floors and getting rid of all that sanding dust. But…………I am doing something besides waiting for someone else to finish up their work now aren’t I! Called the electrician yesterday to set up a time for him to come and install all the lights and plugs! Progress!
Go for my rib X-ray this afternoon. I expect they won’t find anything but it is better to be sure. I NEED my Massage Therapist to come back off her maternity leave!!!!!!!!!!!!!!! She knows all those places that give me trouble! Alas, her babies, (she had twins!) are only a few weeks old so I guess I have to be patient and give her some time!
My sister, Tina, sent me the following quote. She said she thought of me when she heard this. How very appropriate. “Life isn’t about waiting for the storm to pass……….It’s about learning to dance in the rain.” I love it!
November 28 – Well. I thought I was going to write a chatty account about my trip to Pensacola over Thanksgiving to visit my mother-in-law. Trip was very nice but……….my ear started to hurt (ache and stabbing pain) on Saturday, the day before we flew home on Sunday and my shoulders and skin on the right side of my back and under my right arm were very, very sore and lo and behold, after seeing the doctor today I find I have shingles and fluid in my ears!!!!!!!!!!!!!!! Of course, I cannot do anything average with disease, so, of course she tells me she has never seen a case worse than mine! The nasty things are all over my upper back and from Sunday night when I discovered them to Tuesday afternoon they had traveled down my right arm also. So, I guess I will be writing about going through an attack of shingles! They start out looking like an ant bit me – small, red with a clear little blister. Then they multiply into clusters and on my back it is one giant area, upper arm has dime sized clusters and lower arm has a few dime sized and a few more singles. I took home a shopping bag full of medicine from the pharmacy! The dreadful part is that the blisters themselves are uncomfortable but shingles is a virus that attacks your central nervous system so it affects the nerves under the blistered areas and that is what really hurts. She gave me major drugs for the pain! Not there yet and hope I don’t get to that point! I have a decongestant for my ears, Valtrex to treat the shingles virus, Lidocaine patches for the painful skin areas, Lycria for nerve pain, prednisone for treatment of all of it I guess! And I have to be on a regimen of Tylenol every eight hours to help control the pain. Of course most of these drugs can cause constipation so I started in on my Senna-S regimen like when I was having chemo. Not to be Complaining Clara or anything but……………..I really would like a break from all this. It has only been three weeks since I finished up the last Herceptin treatment for the breast cancer! I really am tired of going to the doctor! Feelingverysorryformyself Francine is here visiting at the moment.
Okay, Factual Frieda has just arrived to give info on Shingles in case you don’t know about this stuff. I didn’t. I thought I had a dreadful rash of some sort. Well, actually…I guess I do! Anyway, Shingles (actually Herpes Zoster) is a viral infection of the central nervous system and is caused by the same virus that causes chicken pox, varicella-zoster. Get this….it may lie dormant in the spinal cord until triggered by risk factors. The risk factors are:
Okay, I have five out of seven risk factors! No one ever mentioned this possibility to me nor have I ever read it anywhere except on the info sheet the doctor gave me today (Complaining Clara just had to get that in!).
Onward with the info – Herpes zoster (Shingles) is contagious to people who have not had chicken pox and frequently to patients requiring immunosuppressant drugs for any illness. It can affect all ages but is most common in adults over fifty.
Symptoms – Painful red blisters anywhere on the body. Blisters appear 4 to 5 days after early symptoms begin (for me it was the pain in my shoulders). The blisters appear on a broad streak of reddened skin along sensory nerve routes to a particular area of skin. They occur most often on the chest (of course I have them on my back – good thing, too – the twins would not be happy to be covered in red blisters!) and spread only one side of the body (for me it is the top quarter of the right side of my back and from the top of my head to under my arm the skin is sore to the touch even where there are no blisters). I guess I should be glad it is on the right side instead of the left side where they took lymph nodes. Thank heavens for small blessings.
You can experience the following:
This next bit is cheerful news, really. There is now a vaccine against Shingles but you have to get it before you actually come down with Shingles. It also said that with rare exceptions, one attack of shingles confers lifelong immunity. (Oh please, make it so!)
The rash usually clears in 14 to 21 days (not too bad) but…………….the nerve pain may last for another month or longer (Yikes! Not so cheerful.)
Possible complications are:
Diagnosis is not possible until the rash appears. Before then, then symptoms may mimic appendicitis, pleurisy or other conditions (I thought I really needed to get a massage!) The primary goal of treatment is to relieve the itching (not yet) and pain (yup, that is here) as much as possible, usually with topical and oral medications. The nerve pain that lingers after the skin clears is the most difficult to treat and unfortunately there are no therapies to prevent it. (That is really depressing!)
When bathing, wash blisters gently (Not on your life! I’m not touching the nasty things!)
The doctor told me not to put anything on until the blisters break (double yuck!) and then to use cortisone cream and the Lidocaine patches. I have been taking arthritis pain acetaminophen during the day and will have to see if I need to take the heavy duty stuff to be able to sleep. My friend who has had an attack of shingles told me I would need to sleep on my stomach but…………………the twins are pretty sturdy and it is like lying on a rolled pillow!!!!!!!!!!!!!!! Gets a mite uncomfortable too, squishing them for any period of time! They don’t like that! Might have to stick to my left side instead! It also says that tranquilizers may be needed for a short time (YIKES!) Injections of a nerve block may be recommended in severe cases. (Lordy, lordy!)
It does say that there are no restrictions on activity except to avoid chilling drafts and no special diet but to maintain a nutritious diet.
The info sheet says to call the office if the pain is intolerable despite treatment (my blood ran cold when I read that!) or if new, unexplained symptoms develop as the drugs used in treatment may produce side effects. Geez, geez, Louise!
Okay, now you know as much about this as I do! Probably more than you ever wanted to know but that is my job with these journals – to pass on information. I have to let my oncologist know about the treatment, wonder if he will say anything about the cancer, chemo and radiation causing this. I do know people who have had shingles that have never had cancer treatments but I wonder if it is like the diabetes I have that was caused by the chemo treatments. My oncology nurse freely admits that one! I wish they had suggested I get the vaccine though. If you are in the same situation or know of someone with the same risk factors after having cancer treatments please ask them to ask their doctors about the vaccine to prevent shingles. It is fairly new.
Okay, I really do have some good news, too! We brought home the carpet tiles (24 cases of them) last night and I bought all of the light fixtures we need because the electrician will be here this week to put in all the lights! All the rooms are painted except Harold’s workshop and that is Construction Central and we are going to try and get it finished but if we don’t it is no big deal right now. The stucco guy is almost done. We have to get the air conditioning hooked up and the low voltage and then get a couple of inspections. If we pass them we tidy things up and call for the final inspection and then we can move in! I can hardly believe it after all this time.
I also got a trim and some color (red, of course!) on my hair by a professional and I must say it looks good! I took my wigs to Pensacola but never wore them once!
December 3 – Plugging along here with this attack of Shingles. So far, I have not had to stop any of my activities except for the first few days when the medicines made me slightly woozy – figured I should not be driving my car! It is 6:00 a.m. here and I am quite sore right now as I am writing this but I have taken my first round of medicines for the day and after they begin to work and I am up awhile and get moving around I feel better. Have had to nap or rest each day for a bit, but really, it has not been too bad. I did get a call from my oncologist and he told me they see this quite frequently and for me it is a direct result of all they have done to me. Oh yea. I forgot to ask whey they don’t recommend the vaccine. I will put that on my list of questions for February when I see him for my first post treatment appointment.
If you are eating while reading this I suggest you stop now! This next part is a bit graphic. Some of the blisters have broken and gone down in size, I don’t know where the fluid went that was inside them because it was not on my clothes. I was anticipating disgusting crusty stuff on my clothing when they “broke” so was pleasantly surprised to find it was not a disgusting event! They still look nasty, though. Some are beginning to get very dark red and crust over, some are still moist, and some look like they are fading (the ones that really never developed into a real blister). The only ones that itch are the ones on the back of my neck and the over the counter cortisone cream seems to help that. I went to my first Christmas party yesterday, wore double layers of clothing and a jacket that came down to my wrists and was not uncomfortable with the clothing touching the blisters but wouldn’t let anyone touch me. That was hard as everyone was hugging everyone! No hugs for me, though!
I am planning to fly out on Wednesday if the weather permits. Not my weather, I live in Florida! But the weather in the Midwest! They are having dreadful snow and ice storms right now. The whole point of that sentence is to say that I feel well enough to go! By then I will be able to slap on a Lidocaine patch so when I have to sit still while flying I won’t hurt. You can only use them for 12 hours at a time then they have to be off for 12 hours. Sitting still is when it all hurts the most. Of course, I am flying up to go to meetings which will involve sitting so I will probable make good use of those Lidocaine patches! I must tell a story on myself here. After I found out I had Shingles I was ranting and raving on about if I didn’t allow breast cancer to stop me from going places I surely was not going to allow Shingles to stop me from flying to my meeting! Ranting Rita was in her glory! The next morning it occurred to me (Contrite Connie showed up then) that possibly THEY would prefer I stayed home! And that MAYBE the woman I was supposed to share a room with at the hotel might prefer not to have me as a roomie under the circumstances! Hmmmmmnnnn……………. So, I called the company the next morning and explained the situation and she said to wait until Monday to see how I feel (how great would the pain be then) and if I felt able to come they would put me in a room by myself. I said I would wear clothing that covered all the areas and that I should only, maybe, be contagious for the first day. I figure if I wear two layers, one of them a jacket, there is no way for me to contaminate the seat of the airplane and if I keep covered and don’t touch anyone at the meeting, everything should be fine. I will not allow this current setback to hinder me in any way, I simply refuse to let it! Obviously Kerrie Kickass has returned! Hurray! I am glad to see her!
Finishing up painting Harold’s workshop today and painting some trim. Finally I can clean the windows as the stucco guy is done!!!!!!!!!!!!!!!!!!! They came on Friday and hooked up the air conditioning so we have air and heat in the addition! Harold hooked up the power for the blinds in the skylights. Our neighbor works in phone stuff so he ran all the wiring for the phones and he came and finished that up. Tomorrow the electrician comes to finish up installing all the light fixtures and fans and I call the cable company to come and make us “live” and then Harold has to finish his wiring for his surround sound in the den and we can call for our final inspections of electric, low voltage and mechanical. Then comes the Final Inspection of the whole building and then we get our Certificate of Occupancy and then…………………….we move in! I can hardly believe it is happening. Talk about a dream come true! It is happening at a good time to as it takes my mind off my current situation. See……………the Shingles have gone from being a dread disease to “my current situation!” Now that’s progress!
Lucinda Faye is still lurking around but the Quinine Sulfate is still keeping her at bay. She tries to get my right calf muscle sometimes at night. I think Lucinda Faye is a type of vampire and cannot be killed. Had to stop taking the Magnesium (250 mg once a day - wasn’t working anyway) as my levels were right at the top of the scale after a blood test so low levels of Magnesium were not the culprit in the leg cramps.
I am now “scaling” like a fish! The blisters are peeling off like fish scales do when you clean a fish (I did clean a fish one time in my whole life and have bought fillets ever since!)! Doesn’t really hurt, just feels a bit tingley (I know that is not a word but I want to use it anyway!) and I can feel the air on the new skin. I am achy mostly in my shoulder area and the back of my neck but I worked all day so it didn’t slow me down any! I think I am contagious anymore but will be careful for a few more days, just in case.
Photo of the Week/Month – Studio again, different view, but now with light fixtures ready to go up tomorrow and boxes and boxes of carpet tiles waiting to be laid down! The solid door you see is the door to Harold’s wood working shop and the French door leads to the new den that connects the addition to our existing house. The wall space in between the doors will be the library section of my studio. We just finished up for the night. His workshop is all painted, all the touch up painting is done in the studio, I cleaned paint overspray and dry wall mud from two of the windows, and we bought primer for the stucco. Whew!
Going to go cook dinner and relax! Now I’m caught up!
Ask your doctor about getting a vaccination against Shingles if you feel you might be at risk. I really don’t like having this at all! It’s about as much fun as chemo and you know how much I enjoyed that! At least I kept my hair!
Until next time,
Margot a.k.a. Contemplative Corrine, Complaining Clara, Factual Frieda, Ranting Rita, Contrite Corrine, Kerrie Kickass, Evil Sneaky Leg and Foot Cramp Lucinda Faye and Feelingverysorryformyself Francine
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