Jaime got me a wonderful calendar by Flavia and I must share the opening page with all of you. "Every new year is a gift to the spirit. May your days be blessed with inspiration and the kind of music only the heart can hear." I certainly hope that is how this next year will be for me! If neat things come up on it in the future, I will share them, too.
I am hoping for a great year in terms of putting into practice all the things I had time to reflect upon during my recovery days. I do not want to fall back into old habits.
Since it is the beginning of a new year, I would like to remind you all to schedule that mammogram for yourself or someone you love! Don't put it off - mammograms save lives and I want to see the numbers go up on breast cancer survivors! Feels really great knowing I have a second chance at living. Every once in a while I think about what would have happened had I postponed my mammogram or skipped a year. Very sobering!
January 2 - Listen to what the message is on my Flavia Calendar for today. "Welcome life's changing winds, for change can be a miraculous gift." Love it!
Am sitting here, late at night, crying and crying. Jen and I went out to dinner, had wonderful sushi (cooked for me, although I did have a bite or two of Jen's raw tuna - not bad actually) then decided to go to a movie. We chose Calendar Girls as we had both seen the ads on TV and it looked like it would be good. It was a really good movie but had I known more about it I wouldn't have gone right now. I knew it was based on a true story and that they were raising money for something but I didn't know just what. One of the ladies - Annie - husband dies of leukemia and they are raising money to buy a sofa for the relatives to sit on while their loved ones are getting treatment. Oh dear!
My first jolt was when they wheel out "John" and he has all the chemo paraphernalia hooked to him and he is bald. That was me just five weeks ago! Then he got weaker and weaker and died. Well ..that was uplifting! Then they do the calendar and people see it and know what it is for and start to write to the "Calendar Girls," especially Annie, about how their mission has touched them and that of course, reminded me of my BC Journals and some of the fantastic letters I have received. That got Jennifer, too, and it is a good thing it was dark in there because both of us were crying by then! Then another of the "Calendar Girls," Chris, gives an impassioned speech about helping to eradicate cancer and I am now trying not to sob out loud. All of that stuff hit a little too close to home right now. Thank heavens it had lots of really funny stuff, too, or I would have had to leave the theater! We did laugh a lot in between our tears and if you are not in the middle of a battle with cancer, you will absolutely love the movie!
Having a bit of trouble now trying to close the floodgates! Emotions are still running high and very close to the surface! Doesn't take much to bring it all slamming home to me. Jen, too!
January 3 - Okay, better today! Ran errands, went shopping at Old Time Pottery, dropped off photos to be developed, on to the grocery store, back to make reprints of photos, then home. Left about 11:00 a.m. got back about 3:30 p.m. and was still okay. Needed a little nap around 5:30 but only 40 minutes and I woke up on my own. Getting kind of tired reporting that I am just tired! Pretty ordinary day.
January 4 - Be glad when this port comes out! It either hurts, pulls or itches! Sooooooooooo glad I did not have to leave it in there, "just in case!" Scalp itches like crazy, I THINK I see something going on. The stubble does appear to be longer though still patchy. Feels like whiskers in some places and softer feeling on others. No action anywhere else though!
I just read an article on Life After Breast Cancer. It was titled "Get Moving and Stay Moving." In it, the author talks about the after effects of mastectomy surgery (especially where lymph nodes have been removed) and chemotherapy, such as frozen shoulder, back problems, lymphedema and poor posture (because you tend to slump to ease the pain from the surgery) and depression. Her name is Annie Toglia and her book is titled, "Staying Abreast: Rehabilitation Exercises for Breast Cancer Surgery." It has been awhile now since my own surgery but I am going to get the book for myself. She is a Medical Exercise Specialist and was surprised to find how difficult it was for her to recover after her own surgery. I can verify along with her that there are no comprehensive programs offered aside from the old faithful "wall crawls." They did help and I have had no problems that I am aware of at the moment. I am still, and always will be, very careful to not trigger lymphedema since that is a lifelong concern of mine now. She suggests and I strongly concur - Be proactive about this kind of care. Ask questions like, "Where can I find a program that will address my needs? Who can help me if you cannot?" I did ask but got nowhere - was just told by everyone that "wall crawls" were all that was available. Didn't pursue if further since that seemed to work for me. I feel if it hadn't helped, I would have insisted that someone do something about it! I'm sure you all know by now, I am not the least bit shy about speaking up! She says also that she would like to see every person that has mastectomy surgery or chemo to have a consultation and an evaluation by a physical or occupational therapist trained in particular needs of women who have undergone these procedures that could then make recommendations for their particular situation. She says the programs need not be expensive, that yardsticks and balls can be the tools. It is knowing what to do with them and why you are doing it that would make the difference. If this happens to me again I will insist on this part! I feel it is time that the doctors and hospitals begin to develop programs such as this to encourage gaining your strength back after a mastectomy and chemo. I know I am a strong woman, both mentally and physically and feel that is why I have done so well, but there are plenty of women who are not. So, if I feel that I would have benefited from such programs then I know they should be available for everyone. Okay, off my soapbox!
January 5 - Up all day, didn't feel tired until bedtime - Yeah! I need all my strength for my upcoming implant surgery. I should be feeling just fine when my poor body gets zapped again! This zapping will not be as bad as any of the other zaps, though. Even mentally I am actually looking forward to the after part (who would be excited abut the actual surgery!!!!!) when I begin to look more "normal."
Spent a good bit of time today updating my Medical History document and Current Medications/Supplements list as I have a regular doctor's appointment on Thursday. I have had a "problem" with my scalp forever and since there is no hair to get in the way of seeing my scalp, I though now would be a good time to have it checked out! Also, my toenail has not improved since I asked Dr. M (oncologist) about it right before Chemo #4 and he told me it was not chemo related (remember he was in a very good mood and told me to call him if it fell off!). I shall wear Sassy Simone as she is the easiest to remove and replace! It is also time for the yearly check-up, going to have the woman P.A. do that - much more comfortable with a woman doing those things! Think I will warn her in advance, just in case she didn't look really hard at my chart - that I look a bit like a hairless Chihuahua all over with very odd boobs! Wonder if I will feel uncomfortable? That will be the first time I go to a doctor where I have to undress that the appointment hasn't been cancer related. Also, those appointments are always from the waist up!!!!!!!!!!!!
Progress - I took the wrapper off the yoga tape!
January 6 - Duck down! That is what a reader described the fuzzy stuff that comes in when the hair begins to grow and I like the description! I believe I actually see something happening on my head! Jen has been saying it looks like I have five o'clock shadow and Harold has said he sees more hairs but I haven't really seen anything until now. Not much, but different from what it has been. At least SOMETHING is happening! Eyebrows do not feel bristly anymore either. No new hairs there and no new eyelashes but those coarse hairs that stuck out on my eyebrows apparantly all broke off. They are very thin but at least what is there lies down!
January 7 - I can actually SEE the five o'clock shadow! I can see where my hairline starts! I also see only dark brown and gray hairs!!!!!!!!! A few are even about ½" long! A very few, mind you! But Where is the red and curly new hair I ordered??????? Doesn't really matter because whatever color it comes in it will eventually be red as they have such nice selections on all those boxes of hair color! Maybe I should buy one of those little soft brushes that you brush a baby's hair with when it is just growing in??????? What'cha think???????
Did I mention that I will be keeping Sassy Simone even after my hair grows back? Very convenient to just slap her on my head if I need to go somewhere in a hurry and don't feel like messing with my hair! Maybe Romantic Rose, too - I do like her! I like Sophisticated Sophia but she really is a bit flashy for me. And, of course, we have the Roseanne Barr association with Magnificent Monique so that one is a definite NO!
Progress - no not the yoga tape, maybe later today?????? I turned down a magazine article assignment!!!!!! Well, actually I only postponed it but .usually the word "Yes!" would be out of my mouth before I could even think about it! It would have been due on March first and there is just no way. I have a doctor's appointment tomorrow (Thursday), then next Monday and Wednesday for fills, Thursday is a fill and pre-op at the hospital and then "expanders and chemo port out - permanent implants in" surgery on Friday so will be down again for a while - again! I need to recover from that surgery, still fighting the after effects of the chemo and get my strength back in place for Vegas. Seems like this breast cancer business is still my full-time job!
The Creative Painting Las Vegas Convention is my first big trip out. I have five full classes of 36 each (one is actually overbooked!) a two-part class with other instructors for 60 and a PaintWorks magazine Painting Party with two other artists for 100! Add booth demos for Mayco and Royal Brush and you can see why I need my strength. I still have to write the instructions, assemble packets for all those students and ship everything out of here around the beginning of February along with the surgery! Both Harold and Jennifer are coming out to Vegas this year! I get there on the 21st of February (a Saturday) and they fly in on the following Thursday. That will be great fun. The convention ends on Friday afternoon and we don't leave until Sunday morning so have some time to have some fun - if I can still move by then!
Another fun magazine thing. I also write for a magazine called Glass Patterns Quarterly and have an article due later on this year. The editor contacted me about that one and I mentioned Dr. J and his wonderful glass, asked if she was looking for any new artists for the magazine and she is interested in looking at his work! How fun would that be! Haven't said anything to him yet, he may not even be interested, but it is fun to know a magazine was at least interested in your art work.
Actually feels good to be thinking of future work instead of only thinking all the time of treatments, surgeries and doctors' appointments! Not ready to get back in full-time but the planning stage is important too! Just cannot handle stressful deadlines right now! Went for a long walk this morning - it is cold here (Florida cold not freezing cold!) and the wind was brisk. Felt great to be able to be out in the fresh air!
January 8 - Busy day today. Doctor appointment where I get to whip off my wig so the doctor can see my scalp instead of just parting my hair! On to the Vet at the other side of town, errands to run and have to be back here at 4:00 p.m. for the guy to fix Harold's grandfather clock. Nice to know that all this activity will not cause me to have to take a long nap! Just an ordinary day (except for the wig part!)
Must comment on something here. I have been getting messages congratulating me on my "journey" with breast cancer being over next Friday with the implant surgery. Sorry, but this is just not the case! Aside from the fact I still have nipple reconstruction to go through and maybe a bit more nipping and tucking there is the possibility of tattooing the areola. That's just the physical stuff. When you start the "journey" down this "road" of breast cancer you can never get off. The physical and emotional effects will diminish over time but you are still on the "road." I think people assume that coping with the initial diagnosis, surgeries and chemo/radiation treatments are the most difficult things you go through. They are dreadful, but you are so wrapped up in what is happening to you that you hardly have time to think. I think that because chemo in particular can be so physically hard on you, all your physical and emotional energy is used to just get through it day-by-day. After it is over and this was just the other day that I thought this - "How did I manage to get through all that?" You are in a state of total amazement! When all the treatments end, you and your family and friends are more than ready for things to return to normal. However, that is the time when the woman herself is trying to make the transition from crisis mode to the "new normal" and that is exhausting, mentally. The very fact that you have faced a life threatening disease and came out still alive with a future is both exhilarating and scary. This has affected every part of my life and I now have to make the most of my second chance. All those tests loom over me to see if it has returned. I am sure the cancer is gone but it is not over by a long shot. There is no way anyone can guarantee me that it won't come back so that uncertainty will always be with me. All this is livable and I am getting on with things very well, but it isn't "over." Please don't misunderstand - I am very happy with the messages I received and love to know my friends only wish me the best but I vowed to be as honest in my feelings as possible in these journals and I am quite sure that most women going through this have pretty much the same feelings on the subject as I do. I hope the previous info will give you more insight on the lasting effects of this dreaded disease. Okay, off my soapbox (for now at least)!
Doctor visit went well, felt a bit odd taking off my hair so he could see my scalp but it was okay. Had a good tech take my blood, he got it the first time! I always worry now, since they cannot use my left arm anymore because of the removal of the lymph nodes and sometimes they have a hard time finding a vein in the right one. I try to drink a ton of water the day before and the day of the blood test so I am "plumped up" as much as possible.
January 9 - Nothing major today, just going to Wings!
Want you all to know that Weepy Wanda, Complaining Carla and Ranting Rita do not belong exclusively to me - those ladies will come visit you uninvited! Let them in, though, because they can be a relief after they have done their business and left! On the other hand, you have to actually buy Sassy Simone, Sophisticated Sophia, Romantic Rose (today's persona!) and Magnificent Monique! Hard Rock Hannah and hopefully NOT ole' Leaky, Lop-sided Louise require a surgery as do the Perky Twins, a surgery I am sure you would want to avoid at all costs! However, Brenda Braveheart will come if you need her, all you have to do is ask and then let her in.
I may need to share Brenda for a bit next week before my surgery. I get all hyped up at pre-op and then again when they start all that dreadful prep business. Say "Good-bye" to Hard Rock Hannah and ole' Leaky Louise (she stayed pumped up fairly well this time and I go three times next week for fills so no more Lop-sided Louise!). By the time I write you again, Polly and Dolly, the Perky Twins will have arrived on the scene! Think of me at 1:30 p.m. on January 16th, that is when the twins (really my permanent implants) will replace the expanders and Dr. J. will remove this bothersome chemo port. I have quite a scar from the port surgery, probably due to those little stitches that kept working up through to the surface, and I am going to ask Dr. J if he can pull that skin together better and leave a smaller scar. He will make a small incision (small is his word), deflate the expanders, pull them out, put in the deflated implants, fill them with saline, close the valve and "Voila!" - Polly and Dolly will be here! Not sure at what point the liposuction and nipping/tucking take place. Don't really care as long as I come out with better looking boobs! The ones I have now are a bit on the lumpy side! Of course, I will go into great detail about all of the above once I know the details! Never fear, I will leave NOTHING out!
The photo presentation this week is of Jaime and her family, Thad (husband) Caleb and Chloe. No bias here - again! - but aren't they just the best looking family!
As always, love and good health to all of you!
Margot a.k.a. almost Perky Polly!
After reading through the updates, if you have any questions please email