March 29 – Feelingverysorryformyself Francine, Weepy Wanda and Whiny Whitney are all visiting me today. They were here yesterday, too, and I don’t know when they are planning on leaving! Yesterday started off well. No shot again as I am still 12 for my red blood cell count. I do not have to go in next week either for blood work, have an appointment with my oncologist on April 11th to see where we go from here with the anemia thing. On to the plastic surgeon’s. I had a feeling I was not going to be too happy when he saw that the hole where the drain came out last week had not healed at all and was still oozing a lot of stuff out. I have had to heavily bandage my right side before bed because when I wake up in the morning and start to move around it really starts to leak badly. All the other incisions were healed just fine and he took out the stitches. I could tell by the look on his face that he was not happy with the drain wound. He said it was bad but not really bad and that it was good since that stuff was coming out. I just looked at him and asked him what kind of an answer was that! He said it was the only one he had! I asked him if I was still in the 5% club with all this and he said no, I had moved up in the world and now I am in the 1-2% category for having the seroma in the first place and now for the healing problem. I told him I really had not signed up for any of these clubs and wanted out! He just laughed. Then he wipes the area with Betadine, pushes and pokes at the wound and then proceeds to cauterize the edges of it with silver nitrate. He told me it would burn. YIKES! GEEZ! I told him the wound didn’t hurt until he got hold of it! I have to change the dressing twice a day and swab the area with Betadine. I am allergic to paper tape or really, adhesive bandages of any kind that stay on my skin for more than an hour or so and my skin is very sore with having to have tape on it all the time. Since I have to do this for at least another week I have to get creative each time I change the bandage so that I use “fresh skin” each time and give the irritated skin time to heal. OhIjustwanttobenormal Olga is trying to join the group but I don’t think she has a chance in “you know where” of getting in. Weepy Wanda has been in and out and is fast wearing out her welcome!
So, another week of taking it easy meaning no gardening, lifting, vacuuming…I hate this! I did say that Whiny Whitney was hanging around, now didn’t I!
The good news for anyone reading this is to know that all this dreadful stuff only happens either 5% or 1-2% of the time to anyone so chances are slim that you or anyone you know will have them. However, if it does happen you will know all about it and in great detail!
April 3 – Odd days lately. One minute I am happy as a lark and the next minute I am crying. This hole under Dolly is still not healed and it is now three weeks. The incision for the port removal, the implant and seroma stuff have all healed just fine, no problems at all. But this hole is still leaking and I still have to wear a good sized bandage and my skin is so sore from the bandages and it makes me annoyed, a bit depressed and a little sad. I have to go out of town to teach this weekend and will have to bandage myself up like a mummy so I don’t leak while teaching! I am so tired of all these crappy complications! I know that in “the grand scheme of things” they are very minor – I do know that. But they seem to never end! It is very wearing on your nerves and on your mind to never have it all let up. I worry about what Dr. J is going to tell me tomorrow when I see him and that dratted wound in not any better. What next? Doesn’t seem like I can just go on wearing a bandage. The longer it is open the more chance of infection setting in. I go see the oncologist next week and I am fairly certain we will be in a holding pattern about the anemia. I feel fine aside from the bandages and leaking! The side of my left breast hurt the other night and all I could think of was, “Is it (cancer) back?” That is the breast (poor Polly) where the cancer has been twice. You cannot help yourself from thinking that, and you really can’t ignore it either because it just may be the nasty stuff so you have to check it out. I will be asking both doctors about it. I am fairly sure it is because I have been using my left arm more to try and help the right side heal. This is the stuff that preys on your mind. And don’t anyone dare tell me that I shouldn’t worry about it so much – I had better be on top of it always and forever! Those five and ten year marks are only guides that lessen your chances of a recurrence, not a guarantee it won’t come back. Pessimistic Pearl is here, trying to make a permanent home, but she is right, unfortunately. You are the one who has to be diligent and report anything unusual.
On to some lighter fare. I had company last week, a woman who has just had an implant (our surgery was the very same day) and she had just realized that I never wore a bra. She was asking me questions and of course, I answered them! One was funny, she was wondering if the “girls” didn’t bounce when I walked! Not a chance! Those babies are under my chest muscles and the only time they move is if my chest muscles move (when stapling, getting ketchup from Wendy’s containers, pushing up from the floor, etc.). I can run (not that I do that very much, walking is more my speed!) and have them stay in place! Unless I tell someone they have no idea I do not have on a bra. There, isn’t that info that everyone needs to know!
I did have a wonderful weekend though. Remember, last year when Jen, my friend Marie and I all went to Beauty School? Well, we decided, actually it was Marie, that we should have a Spa Sleepover to really learn all about the products. So Jen and I invited some really close friends (they would have to be close if we would all be sleeping in the same room!) and each one brought a movie or two, some snacks and they came over in the afternoon, we had wine and cheese, did our hands and went to dinner. Came home got into our “jammies” had some fancy drinks and did our feet and our face (we all got a fit of the giggles when we did a chemical peel and had strips of plastic looking stuff hanging off our faces!) and watched movies and ate warm, gooey Rice Krispy Treats! We were camped out in the studio for all of this. Moved all the tables and put down mattresses! Got up in the morning and Harold made us all omelets as we were getting ready for the day. Had a ball doing all that!
April 4 – If you are the least bit squeamish you might want to skip the next paragraph! Saw Dr. J today and the drain wound is still open and leaking so he says we have to irrigate inside with a weak bleach solution called Daycon (or something that sounds like that) to help prevent infection since it has been open now for three weeks. Bleach! Inside the wound! Yikes! So I ask how he is going to get it in there and he shows me a four inch blunt needle (it actually looked about a foot long to me!) and he was going to go up into the open wound and shoot the solution in there. What? What did he say? He’s going to do what! So I ask if this will hurt since I have visions of excruciating pain associated with someone shoving a long needle into my body through an open wound! He says that the solution may burn a bit inside but that the needle would not hurt. Hmmmmmmm………………do I actually believe him? Doubting Dora was settling right in by then. So I grit my teeth and lie back with my arm up over my head so he has easy access to the wound since it is under my right breast. Lordy! I can feel when he starts to insert the needle but………no pain yet. Then he starts to roam around in there with that needle and I am sure any moment I will begin to scream with pain but……………no pain yet. He says he is having trouble getting up into the wound which is a good thing since it means the opening is not huge which would allow for increased possibility of infection. Still no pain. Soon I feel liquid running down my side and I ask if that is solution or if it is “stuff.” He says it is some of each. Yuk! He has a towel beside me to catch all that liquid but it is still gross to have it running down my side. Then I begin to feel just the slightest bit of tingle inside, and still no pain from the long needle. Then he pulls the needle out and I am so relieved that there really was no pain and then…………………..he starts to mash my poor boob! He poked and prodded and pushed and mashed forever and I told him that what he was doing now hurt more than the needle! He said he was trying to get as much liquid out as possible. I must say I felt like an orange that was being squeezed for juice! Finally he finishes and then tells me that I must do that every day myself! Oh yea. He said that he thought that maybe pockets were being formed as the implant started to settle and then I would move and out would come a gush of “stuff.” I will have to really move poor Dolly around vigorously so that does not happen. I knew I could not go on indefinitely with a hole in my chest so I ask “What now?” Well…………………if I am not healed over by next Wednesday he will cut away the skin that is not healing and sew me up! He has a surgery in the office for small stuff so I do not have to go to the hospital but Geez, Geez, Louise I really don’t want to have to do that! I asked what would happen to the liquid that is now leaking out and he said my body should absorb it. I asked if the possibility existed that it would build up under the implant again and he said it was a possibility but that I cannot go around with a hole in my body and that an internal infection would be a whole lot worse. What crappy choices! The other incisions from the port removal and the implant surgery are still fine so it is not that I cannot heal. He then bandaged me up and off I went. By then Doubting Dora had been replaced by Relieved Renee. Stopped at the store to lay in another week’s supply of bandages! Now I do have a funny to tell you. I was complaining to him about all the bandages I had to buy and that they were expensive and he told me to stop buying the big absorbent pads that cost so much and buy a package of Kotex instead. What? Kotex pads instead of bandages? He said they work just the same and are a lot cheaper!!!!!!!!!!!!!! So I did. So now I have gauze on the wound itself and then a big ole’ Kotex pad taped to my chest! I must say, I have had no leaks from the bandages! I guess I am now Kotex Kora!
April 9 – Well, it is Monday and I am still leaking. I don’t believe that the wound will be healed over by Wednesday. Guess I had better plan on the nasty cutting and sewing plan of action. I see the oncologist on Wednesday morning so it is another doctor day for me. Oh yea.
I did enjoy my weekend though. I taught seminars and they were within driving distance and on the Florida coast so Jen went with me and spent her days at the beach while I taught. I enjoyed myself, did not get tired at all, just had the sniffles from all the pollen in the air and since I was all bandaged up with Kotex I didn’t have any leaks!
I am so ready to work out in my garden and do other heavy stuff like redoing some of my brickwork on my first patio (I am expanding it to accommodate a small table and chairs) and I am getting antsy with having to take it easy. I feel great other than the open wound and that doesn’t hurt at all, it is just bothersome.
April 13 – Well, I am still on light duty for another couple of weeks. The wound had not healed over and so on Wednesday Dr. J injected the area with numbing stuff (the only part that actually hurt of the whole thing!) and then cut away the skin that wouldn’t heal and stitched me up. I am sore but not enough to need a strong pain medication, just a couple of Tylenol does the trick if it starts to get too sore. He will check the area next week, maybe get the stitches out the week after or maybe not for another week after that. Will have to see how I am doing. I must say it is nice to not have to wear bulky bandages all the time. The little steri-strips are doing just fine and no leaking! Dolly is remaining her normal size so hopefully no fluid is building up in there! If that happens he may have to insert that dratted drain again. But……..he feels that the fluid that the fluid that was leaking out was just regular fluid that belonged inside but since there was an opening available it just kept on leaking out. He said that there is always some fluid around the implants and that after awhile your body gets used to having holes in it! I guess it is like having your ears pierced! I had to promise to behave for awhile longer and not do any heavy lifting or really anything too strenuous for a bit longer. I told him my whole Spring is passing me by! This is probably the longest I have ever gone without gardening! He does have some sympathy for me since he likes to garden, too, but it is just too important to get this wound healed over for me to mess with doing things I shouldn’t. Soooooooooooooo I just wander around out there looking at all the pretty flowers and trying not to play in the dirt!
Saw my oncologist that day, too, and I am still on “anemia watch” for six more weeks. I am at 11.8 with my red blood count and he wants me at 12.5 and holding before he decides the problem is over. I have to go for blood work every two weeks now instead of every week and he said that if the next two are still up I can skip the next month and he will see me in the six weeks. He is leaving it up to me. Hmmmmmm……it will be tempting to not go but I will have to wait and see how it goes before I even get to explore that option. He wanted me to have another Aranesp shot but my insurance won’t cover it (each shot is $1800.00!) if you are above 11. I told him, “Gee, that’s too bad!” I am perfectly content to see if my body can rally without the shots! What he is looking for is to see if I have Myelodysplastic Syndrome. It is bone marrow failure disease and I definitely don’t want that! It can be a complication from chemotherapy, especially having had chemo twice in just a couple of years. He still believes I just have bone marrow suppression for the same reasons but if that is what it is my body will fix itself over time. I vote for the second one! I feel fine and have energy so those are all good signs.
Shingles report – still itch! Just in the place where they were the worst and every few days I have to resort to wearing the Lidocaine patch but that is mostly an annoyance in the Grand Scheme of Things. Just letting you know that the itch is still there after six months. Anytime Itchy Ida wants to quit her job and move on is fine with me!
Hair report – I am so used to having hair again that I am back to cutting it myself!!!!!!!!!!!! Looks good if I do say so myself, and I do! I had to get a new military I.D. card yesterday and when it got to hair color the woman said, “Your old card said grey, what do you want this time?” I told her that “varies” would be best but that brown would do! The last time I got my I.D. card I had just a bit of roots showing with my red hair and that dragon lady insisted that grey be entered on the card! This woman was sooooooo much nicer. The photo she took was actually quite good and lovely lady that she was, told me I looked ten years younger than the old photo from four years ago!
Leg and Foot Cramp Lucinda Faye still lurks. Looks like I probably had some permanent damage to my muscles but as long as I take the Quinine Sulfate every night I am A-Okay! I know that Lucinda Faye is very annoyed, but I love it that Quinine Quinona (I had to make that one up as I couldn’t come up with a name beginning with a Q!) is making her behave!
All in all, life is good.
I read my horoscope every day and sometimes they come up with good stuff, Today was one of those days. It read, “Nothing in your life is written in stone, and you must accept that things can change with little or no warning. Everything is fluctuating in your life right now and it would do you some good to try and go with the flow. You need to be like a surfer riding a bodacious wave. You can chose to flail about and try to fight the current and you’ll only tire yourself out and feel like you failed. However, if you choose to go with the flow you will experience a lot of excitement……..and power.” I don’t know about the word “excitement,” I certainly haven’t found cancer to be “exciting” (although maybe having your adrenalin levels sky high could be considered exciting!!!) but I certainly have found power! Power to be part of the treatment process, power to overcome misery, power to go on with my life and enjoy it fully, power to overcome cancer twice…lots of power there! I really do like the first sentence, though. Life is not written is stone and can change in an instant. Remember that and enjoy every minute of every day!
So, this update ends on a very positive note, I think. Still a couple of nagging problems but nothing major and these problems will be gone soon.
I came across a couple of interesting quotes and information and would like to pass them on here. The first one is on fear, a very real thing that we all have to deal with whether we are sick or not. Maybe I will get this tattooed on my arm so I can refer to it often!
This next one is from a newsletter I received –
This one I am sure you have seen before but I love it! This is my plan!
And this last one is a Helpful Hint for chemo but I imagine it would work for any nausea. I have not tried it myself but it came from someone who did use it and it worked for her.
I thought I was done until I sat down to read a book a friend just sent to me. She said it was good and the cover says it is a bold and funny memoir about a woman with breast cancer. The title is “Why I Wore Lipstick to My Mastectomy” and the author is Geralyn Lucas. Sounds right up my alley, don’t you think? I wear eye makeup to all my surgeries! Well, I started reading the first chapter and found myself so choked up with emotion and tears I could hardly breathe. She is just starting her journey, just been diagnosed and knows she will lose her breast. She is trying to come to grips with that and the fact that both men and women hold breasts in high regard. She is only 27. She has gone to a strip club to see if she can figure out just what the fascination is with breasts and how she is going to deal with losing hers. The ending to the chapter just tore me apart. Read on but get the Kleenex ready!
She is thinking that when she loses her breast she will be stripped of part of what she thought made her a woman, made her desirable. But she thinks….she will still be her. She thinks that maybe the ultimate striptease is still ahead of her. First her breast will be cut off. Then her hair will fall out. Then when there is nothing left to strip that maybe there will be a revelation of a different beauty underneath, one she never knew existed. She will be stripped to the core of her being but she will still be there. She will find a way to exist. Somehow.
I am all choked up again just writing this. It brought all of it crashing back in raw emotion. I remember looking in the mirror with no hair, no real breasts just the beginning ones from reconstruction, no eyebrows or eyelashes and thinking to myself that I was “gone.” I guess the old me was really gone. The person that emerged from all of it is different. Better in some ways, more fragile in some and stronger for sure but part of ME is gone forever.
Oh dear, I must get Sobbing Sabrina under control! I really am fine but having cancer of any sort is a life altering experience and the experience changes you and never goes completely away.
April 15 – I stayed up very late last night and finished the book. I never did laugh but I went through a whole box of Kleenex! I was crying for mostly for me and my family for all that we have gone though these past few years. I was getting really tired so every once in awhile in the midst of a huge sob I would have to yawn. Do you know how hard that is? To yawn and sob at the same time? I would imagine I looked as if I were being tortured! I did almost laugh at that image! My recommendation on reading the book – it was a very cleansing experience for me and I think I needed that. There were enough similarities that it felt like some of my story with someone else telling it. I must say I never really thought about her at all! Probably because she was rich and famous and so far from my own way of life that she really didn’t seem real. If you are into cleansing of your soul of breast cancer and all that it entails, then by all means read it. It jumped around so I had trouble sometimes following just where she was at that moment in her treatment. As a funny story? For a lot of info? Not so much. Remember, this is just my opinion. I am glad my friend sent it to me to read though, it did me good to really cry for myself and, no, that is not self-indulgent, it is necessary if I am to survive all this intact. Feelingverysorryforyourself Francine needs to come to visit every once in awhile so you can keep your sanity!
April 17 – Well…………….first time in a long time I got good news from one of my doctors! Saw my radiation oncologist and he said I have great boobs! Well… he didn’t say it exactly that way! I had to sit on the end of the table with my gown hanging open and my hands on my hips so that my whole chest was visible. Of course, all I could think of was that my tummy was hanging over my waistband and no amount of “sucking it in” was going to work! Not that my boobs were hanging out, mind you, but I was worried about my fat tummy! So, he looks, and he prods and he pokes and I have to put my arms up over my head and he visually measures if my boobs are the same size and finally he says, “You look wonderful, much better than I ever expected. No one would ever guess you had massive radiation” Of course, he was looking for any damage to my skin or implants from all the radiation last Spring (scarring, hardened or leathery skin, discolored skin, lumps, bumps, etc.) and he was not really concerned with my “great boobs” but I will take any compliment I can get! I did tell him I was pleased, too. He also had never heard of the seroma (what a surprise!). He said in all his years of radiation that he has seen many, many patients with implants and never heard of this situation. I told him that is just what my plastic surgeon said! He actually laughed when I told him I had moved up in the world to the Exclusive 1-2% Club. I told him all that had been going on since I saw him three months ago and he did say that I have had a “real time of it.” I would say so! But, he was so pleased with my overall progress that I do not see him again for six months. Hurray!
The drain hole has not leaked one bit and my boob is still the same size and the stitched area itches so I think Dr. J will be pleased, too. That just leaves the endocrinologist tomorrow morning! Then I am off the hook until a week from Wednesday when I just to get blood work for the anemia at the oncologist’s and hopefully have Dr. J remove my stitches and set me free to garden!
I leave on Thursday to go teach for the weekend and am staying with a dear friend who will spoil me so I should have a great time! Things are looking up!
April 19 – I swear I will send this out after today’s update! This is turning into a book all on its own! I saw my endocrinologist and happy news – my diabetes is still under control! Yea! I told her all that had happened since I saw her last (only four months ago!) and she just shook her head. She still wants to see me every four months for awhile until everything settles down and I get on some sort of “normal” track.
Went on to see Dr. J and told him that he was the third doctor in two days and that the other two had good news for me so I expected the same from him! He was very pleased with how the wound is finally healing but said I am not “out of the woods” just yet. When I am totally healed with no more draining and no swelling he will give me the green light. Still on “light duty” but I can start adding things in slowly. The area just itches mostly with a little pain now and again, mostly the ends of the stitches poke me! He went on to tell me that he just read an article in a Canadian medical journal that addressed this problem. They wrote that over a twenty year period there were five cases reported – I told you I was in an exclusive club! Anyway, they surmised that what happened involved textured implants (that’s me – didn’t know there were smooth and textured!). They really didn’t know exactly what happened either, were just guessing, but they said that scar tissue forms around the implant and that in some people it is more brittle than in others and that for some reason the scar tissue “breaks” and allows the implant to move back and forth across the chest area causing the blister to form. Dr. J said if he had read that article before my surgery he would have used a new smooth implant and that if this happens again I will definitely be getting the smooth ones. Interesting. I just read a Brian Andreas quote this morning that said “I don’t want another opportunity to lean and grow, she said. I just want to eat crackers & watch Oprah & pet my cat.” Lordy, lordy that is me! I really, really do not want to learn about any more “exclusive” oddities that can occur because of breast cancer, thank you very much!
One bummer thing I realized this morning – I was thinking that I would be done with the anemia thing in another six weeks if all went well. Was looking at my date book and realized that I have to go every two weeks for blood work until July! It was six blood tests my oncologist was talking about, not six weeks. Drats! No wonder I am low - they keep taking it!
Photo of the Week – Still in my studio. Paint rack is finished and all loaded up and we finished the doors (are those fancy doors or what?) on the storage cabinet next to the paint rack. This photo is taken standing by the outer door of the studio looking towards the new den. The lace curtain on the door softens the view when you are in the den looking into the studio and looks very pretty from the studio side. A friend painted the door crown that is above the door and it reads, “Art washes away from the soul the dust of everyday life.” It is a quote from Picasso. I painted the door guards in a class I took from the door crown artist. Click on image for larger view.
Til next time,
Margot a.k.a Perky Polly Keeper of the Perky Twins, Feelingverysorryformyself Francine, Weepy Wanda, Whiny Whitney, OhIjustwanttobenormal Olga, Pessimistic Pearl, Doubting Dora, Relieved Renee, Kotex Kora, Itchy Ida, Leg and Foot Cramp Lucinda Faye, Quinine Quinona, Sobbing Sabrina and Exclusive Elsa. My, I did have a lot of “company” this time, didn’t I?
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