Margot Update 37
May 12 – What a dreadful day! Supposed to see Dr. M. my oncologist and was a bit nervous just because I know he is actively hunting for any signs of recurring cancer. Not that Dr. P, isn’t but he just feels for lumps and Dr. M takes blood and scrutinizes it. Blood seems more scary, I guess. I had also made arrangements with my regular doctor to have Dr. M’s lab perform blood tests there instead of me having to have blood drawn again at his office. I had been drinking lots of water and squeezing a rubber ball - all to pump up the veins in my right arm so they could get it in one poke! No wig as I wanted him to see how my hair was growing and to tell me if I could dye it and if the curls were permanent. Had my list of questions all ready, too. So I am all hyped up about going and I arrive ahead of time and sign in. Shortly I hear my name mentioned but by the office girls not being called in by the nurse. That is never good. The receptionist then calls me up to tell me they don’t have me down for an appointment! Now, I always make the next appointment before I leave their office and write it down in my date book right then so I KNOW I made the appointment. I also like to see Dr. P on Tuesday and Dr. M on Wednesday so I can tell him what Dr. P said. I tell them all that and they still say they don’t have me down like it is my fault! Now I am a bit annoyed and it shows. So they say they will work me in. Okay, annoyance lessens a bit. Don’t want to be there anyway! Then the lab nurse calls me and at the same time the office girl calls me back. I decide I should go see what the office girl wants first. Well, it seems that my referral has expired and they can’t see me without the referral. Said it expired in December 2003! So I ask how I was seen in February, then. They had no answer to that one, just that I couldn’t be seen today because of the referral and that it took my insurance five days to respond to a referral request. So I ask whose responsibility it is for the referral and they say in a very condescending tone that it is the patient’s responsibility to do that. In front of all the other patients there mind you, and it is a very busy practice! Now I am angry. I say back “Well how does a patient know that their referral has expired?” Now in my own defense I have not dealt with getting a referral for anything since last August and was not paying my closest attention to details like that back then. The office staff at the different doctors handled them. They tell me it is my responsibility to keep track of all that not theirs. Even if they were correct it was not the right thing to say to me then! Soooooooooooooooo………..I tell them I am a very responsible person and that if I know my referral has expired I will take care of it and that my other doctors office manager (Dr. J) told me I needed a new referral for my upcoming surgery so I had asked for it from my primary care doctor along with the request for blood work to be done by Dr. M and that if anyone had bothered to inform me that I needed a new one for Dr. M I would have done so at the same time. Of course, I said this loud enough for all the other patients to hear just in case they were not aware of this themselves. I also said, “So, I have wasted my whole morning for nothing? How do I ensure that this does not happen to me again?” She said she would let me know when I came in next week how many visits the referral was for so I could record it in my date book. And guess what – she said they would take care of getting the referral!!!!!!!!!!!!!! So I will try again next Tuesday. Now, I can feel I am beginning to get very jittery and it is probably time to leave before I have a fit of some sort! I was icily polite through the whole thing with a wee hint of sarcasm thrown in for good measure! Now I get out o my car and I am feeling like I am about to come apart from fury and frustration! I get in the car and throw my stuff on the seat and start to scream “Damn, Damn, Damn, Damn, Damn” at the top of my lungs while beating on the seat with my fists! Then I started to cry, then I felt like I was made up of little pieces and that if I came apart I would just be a pile of little pieces that would never go back together again. I have not been that mad in a long time – not since way back in September when I found I would need chemo after all and people were telling me how good it was that I only needed four chemo treatments. I had to sit there for about ten minutes to get myself under control before I could drive. In defiance and without consulting Dr. M first I bought hair dye, Dark Auburn – then I went to lunch and had everything I shouldn’t. I was on a rampage! Took the rest of the day for me to settle down. And – lo and behold, at 2:45 p.m. my insurance called with the referral number! Five days my #$@*%! So with sugary sweetness I called Dr. M’s office back to let them know I had received the call and said I was just double checking to be sure they had gotten theirs! Meeeeooooww!
May 13 – Amazing! I now have enough hair to actually stick a pen behind my ear and have it stay! It felt so odd when I put it there, well that was not odd – that was habit – what was odd was the sensation of having something behind my ear again after seven months of - nothing. As you can see I am much better today!
Jen came over tonight and helped me dye my hair so Interim Ida is no more. I did photograph her though, and she will appear at the end of this update. No fair peeking yet! Well, all I can say is that I my hair is not red at all, just boring brown! Dark Auburn my foot (see, I am calm now!). The package promised dark auburn for the dark brown parts and lighter shades for the gray areas. They lied! It is all boring brown! So I guess I will be Boring Brown Betty until this fades and I can try again with another color and a different brand. Drats!
May 15 – Did I ever tell you that Murphy’s last name was Clark? Well Murphy has struck again! AFTER Harold got the (expensive) listello (fancy trim/border) tiles up in the bathroom I discovered that the antiquing finish comes off! We also have eight accent tiles with the same finish on the inset. So I call the store to find out what kind of sealer we need to protect the finish and she tells me it sounds as if the tiles are defective and will most probably have to come off but to call the owner on Monday just in case there is a sealer that will work! She said definitely not to grout the tile! That was not the answer I wanted! So we are in a holding pattern on the bathroom – again! Geez Louise, is nothing ever easy!
May 17 – A great Flavia quote today: “If you could be anything you dreamed of, what would you be?” Am going to do some hard thinking on that one myself.
Called the tile guy and he also thinks they are defective so he sent someone out to look at them and that guy agrees, too. He took one back to the store so now we wait until Friday to see what the rep from the tile company says. Good grief! Now, why didn’t this send me into a fury like the day at the doctor?????????
May 18 – A bummer day. Finally saw the oncologist today and on the surface I am doing fine but……..I have a cough that he believes is sinus related and shortness of breath that he thinks is something else but to be on the safe side I need to have a chest X-ray this afternoon – will also be in lieu of an annual mammogram which I don’t need anymore! Having to have the chest X-ray is not too bad. The bummer part is this…..after I described some odd things that have been happening such as the screaming fit, emotional eating (recognize it, just can’t seem to control it!), shortness of breath at odd times not after exercising (nostrils flare and I just can’t seem to get enough air and then it subsides in a while), crying very easily (emotions are right under the surface) – he believes I am suffering from mild depression and that the shortness of breath is due to anxiety (normal with this whole cancer business but that I am showing “classic signs” of depression and anxiety and need to deal with them in a different way than I have been) but he said he was most concerned about “people like me” who normally have a very good attitude, are very pro-active in their care and are strong willed individuals. Moi????? He says he doesn’t want to see me in a year with anxiety attacks or a stroke from being “too strong.” I asked him why was this happening “now” after all the bad stuff is about over and he said it is typically “now” that this happens to people who have been dealing with cancer. He had me see a counselor today, we spoke for about a half an hour, I got all weepy because he felt I needed to see someone (I guess that is the reason!) and she thought that maybe I needed an anti-depressant. She spoke to him about that and he said at this time he doesn’t feel I need medication but he does want me to talk to her on a regular basis until I get through this period. If I can’t get through it with talking then maybe I will have to do the medicine route but I don’t really think so and she said he really didn’t think so either so that is a good thing. This is once a week that I am to see her though, and I guess it makes me feel I can’t deal with my situation by myself, which does indeed seem to be the case! Sigh – another journey. Geez – looks like Weepy Wanda has returned!
The doctor did say it was a possibility that my curly hair would stay if I keep it short. Hair dye is okay, too, and I don’t need to have any pre-medications to see the dentist either so all those things were good. I asked him when you are considered a cancer survivor and he said after five years. Drats, I was hoping it was sooner than that. Five years seems a long way off right now. My “anniversary” date is from the ending of chemo not the actual surgery and that was only five and half months ago. Hmmmm…seems longer ago than that.
The chest X-ray was a piece of cake! Didn’t even have to open the lovely gown they provide. Just stood close to the screen from the front and from the side and I was done!
This Flavia quote seems very appropriate today – “Our lives are woven by the weavers of time in a pattern we cannot see.” They need some new yarn in my pattern I think!
May 20 – Have come to terms with the need to see a counselor and am actually now glad to be going! It feels like someone has given me permission (that I couldn’t give myself it seems) that I am still recovering and don’t have to prove how “well” I am to anyone. I actually said “No” to two requests this week for “crisis management” work. Usually I would have felt I could work it in somehow but the doctor’s diagnosis was yet another wake-up call in this ongoing journey of breast cancer and the after effects it has on your life. I am beginning to feel as if I have surrendered a burden of sorts. Maybe this will prove to be an interesting and enlightening journey after all.
May 23 – Went with Jen last night to see the play, “Menopause the Musical.” It was my Mother’s Day gift and we had a great time together. It was hysterical! You absolutely must go to see it if it is your area. Go to http://www.menopausethemusical.com/ to see if it is close to you. They are closing here for the summer but will be back in the fall. I am going to get a group of women together and go back and see it again. It always plays to a sold out audience here. I bought the CD, the songbook and of course, the T-shirt! There are four characters, Soap Star, Earth Mother, Power Woman and Iowa Housewife who meet at Bloomingdale’s in New York City. All the songs were parodies of real songs and were just hilarious! My eye makeup was smudged from laughing so hard that my eyes watered! My favorite songs were “Puff, My God I’m Draggin” (to the tune of Puff the Magic Dragon) and “My Thighs” (to the tune of My Guy). Felt really good to laugh hard after this week. And……….I went with my own hair! No wig! First time I have gone somewhere “dressed up” without a wig. I am going to fly to Phoenix on Tuesday sans wig, too! Are you ready for this next statement???????????? I actually LIKE the way my hair is coming in! Even the Boring Brown Betty look is not too bad as it seems to be fading so is a bit lighter in color. Definitely really red next time though! Lots of Mega Gel to make those wretched cow licks behave but very nice curls around my face. At the convention next week I will definitely not wear a wig for the day we have to set up the booth. They never have the air-conditioning on in the convention hall during set-up and Phoenix is 100 degrees! Sweating actually enhances the curls so I should be just fine!!!!!!!!! I do plan on wearing the wigs for fun and ease of getting ready for the days of the trade show and all the various meetings and dinners that go along with conventions, will see if I actually decide I prefer my own hair. Lost a few pounds so am feeling good about that , too.
I see the cancer counselor again in the morning. I figured I would wait to send this off after I saw her again so I could talk about it a bit. I am actually looking forward to it instead of dreading it like I did last week. I feel liberated, will be interesting to see how talking to someone about all this makes me feel in the long run. I am surprised at how good I feel after talking to her just the one time. My, I used the word “feel” quite a lot in this paragraph!
May 24 – Had my second session this morning with the cancer counselor. Not as earth shattering as last week, just talked about myself – what an odd feeling to just talk and talk about yourself and not be considered rude! She said it was my job while I was with her to talk about myself.
One thing came up and I really must get this off my chest – it is crushing Polly and Dolly, the Perky Twins, and we just can’t have that now can we? While I really do appreciate all the nice things that have been said about me, I feel like I am accepting them under false pretenses. I was not any more courageous or brave than millions of other women that have gone before, after or with me, you just don't know them or they have chosen to keep everything to themselves. So, please know I really am just an average woman who simply chose to write about an experience that happens to many women who handle it just as well or even better than I did. I had told this to the counselor and she told me she felt it would be of great benefit to me if I wrote about it, here in the journal instead of just thinking it.
She also made a very good point of why I am depressed and have anxiety problems. She said that with a normal illness you don’t feel good so you go to the doctor and they give you something or do something to make you feel better and you take the medication or do what was suggested and you feel better, end of story. With cancer you go to the doctor feeling just fine to be told you have an illness and not just any illness but a life threatening illness and then still feeling fine you have surgery and after a bit you have chemo where again, you feel fine except for healing from surgery and then they give you medicine that makes you really sick and as soon as you start feeling decent again they give you more medicine to make you sick again and tell you that you are getting better. She said it is so far from the normal way of things that your mind has a very hard time accepting it. In the midst of it all you just get through each day doing what you have to do to survive this abnormal situation. When finally on the mend your mind tries to put it all in place and it just doesn’t fit into any of the nice neat compartments where we store experiences. Then you try to resume your normal life and things aren’t normal anymore. You have to adjust to way things are now, not the way they were. Now, I know I have written about just that but apparantly it slipped by me when I wasn’t looking and I tried to have everything nice and normal again and it is not. I also like to be in control of things, house and garden nice and neat, daily life nice and orderly and having cancer you feel like you have no control over what I happening to your body (which you don’t – feels like your own body has turned on you) and it is hard to accept. Then there is the waiting for five freaking years to see if the nasty stuff comes back. I guess I should be more surprised if I wasn’t a little depressed and anxious! I sat down last week and just started typing sentences that began with “The truth is………and just let it come out since no one will ever read it but me. I was very surprised at some of what I wrote about what I had “thought” was the truth on the surface and what I really felt was the truth down deep in my heart and soul. Am really hoping I come through this counseling with a new attitude based more on what is best for me and what I really, really want to do with the rest of my life. And, the realization that no one can make it happen but me so I need to really think about what I want and how I really feel about things. Pretty heady stuff, huh!
Okay, enough of this really serious stuff. I am all packed and ready to head out to Phoenix tomorrow for a painting convention. I return on Sunday night and leave to teach again on Tuesday, back on Friday and have an appointment with the counselor that afternoon. She is keeping close tabs on me for a while; especially with this heavy travel schedule I gave myself! So, it will be a bit before I write again.
By the way, have I mentioned that my nipple reconstruction is scheduled for September 15? I will go visit Jaime and her family in Dallas for ten days before that, come back and have the surgery and then rest and recuperate (again!) for what I hope is the last of the surgeries or treatments I have to have pertaining to this whole long journey that is breast cancer. Then we just play the waiting game.
On that note here is the photo of the week – Interim Ida! She has already been replaced with boring Brown Betty and as soon as the boring brown wears off, you will see Ravishing? Riotous? Raving? (No, not that one for sure!) Rebellious? Racy? Red-hot? Retro? Reliable? (No, not that one either!) Remarkable? Remodeled (Kind of like that one!) Renewed? Renovated? Repaired?…………….Redheaded Rita! I know that in the past Rita was Ranting but she has calmed down now and can be trusted to behave herself!
Take care of your health and be happy in life!
Margot, a.k.a. Perky Polly, Interim Ida, Boring Brown Betty, soon to be “something” Redheaded Rita, Weepy Wanda (gonna ditch that one as soon as I can!)
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