April 11 – Chemo is done. Am I happy? Am I running around being ecstatic? Celebrating? No. I have been down all day, feeling numb and a bit sad. Are you surprised by that reaction? I believe it happens more than you would imagine. I even think that a lot of people say they are happy and relieved because that is what they expect others want to hear when in reality they are feeling as I do. I think it will take some time for me to appreciate the fact I am done with chemo. I still have to go next Tuesday for Herceptin and the following Tuesday for Herceptin and to see the doctor for my monthly visit. After that I will see him every four months and expect the Herceptin to be scheduled for every three weeks. For now nothing much has changed except I won’t be there for three to four hours, my hair will start to grow back in a month or so and after a week or so the leg cramps should begin to subside. I am only one third of the way through my total treatment so celebrating seems a bit premature. Instead of being happy, I can only feel sad for myself that I had to even go through it again. I am okay but don’t expect great joy from me quite yet.
April 12 – Cried myself to sleep last night. While laying there it came to me why I feel the way I do. This is the best analogy I can come up with. It is like I have been subjected to ongoing physical abuse and all of a sudden it seems to be over. Parts of it will continue on for awhile and the specter of the chemo abuse returning will forever hang over my head. Cause for celebration? I think not. More a sense of wariness and apprehension on what new abuse my body will be subjected to with the radiation. This is the reality of the situation with no sugar coating whatsoever. Harsh I know, but real.
I did not have to have a Burning Aranesp shot yesterday, though, and that was good news. All my counts are now within the normal range so I did make it through, physically, just fine. I think I said a while ago that this time around has been much harder mentally than physically. I received another certificate from the oncology department for completing my chemo treatments. I will file it away with the one from the first time and hope that is that last one I will ever receive. I’m telling you, Downer Dorothy is having a field day with me! I was a bit apprehensive about sleeping last night as that Leg and Foot Cramp Witch, Lucinda Faye actually visited me while I was getting the Taxol! However, I slept all last night, no cramps and no being wide awake. Last week I was up most of the night after treatment from the Decadron. You just cannot predict the outcome of each treatment. Also, Constipation Cora is still off visiting someone else so that is very good. Next week I will start to slowly wean myself off the Senokot tablets. I still have a couple hundred left in unopened bottles, anyone need them????????????????
April 13 – Well things are looking up. The dark cloud of gloom seems to be drifting off from directly over my head! Yesterday I actually used my new studio for the first time! I have a ton of stuff to prepare (sanding and basecoating a lot of wood pieces) and usually that is all I can do until that part is done due to lack of space in my current studio. Well – I dragged two tables out to the new studio, set up one for sanding and one for basecoating and whiled away the afternoon out there. The weather is perfect, I had all the windows and doors open and it was wonderful! When I came back inside I could actually use the worktable in the current studio to draw designs so I am already beginning to be able to work smarter, not harder! I love it!
Only three hours of sleep last night though, as that Witchy Leg and Foot Cramp Lucinda Faye is here visiting! She is a most unwelcome guest!
Fingers, toes and the first half of my feet are sort of numb. Not all the way, just half asleep. Luckily it doesn’t seem to be affecting my drawing and painting ability! Fingers that is, have not learned as yet to paint and draw with my toes! The numbness will begin to go away in a month or so. I did not seem to be affected by “chemo brain” this time around, thank heavens. That was very disconcerting last time but it did all go away over time. I do not think it will take me a year and a half to feel myself like it did the first time around either. I have felt pretty decent through most of this however it just occurred to me that I still have the radiation to go through so I may have to modify that statement after that treatment ends. I will say that it will not take me that long to recover from the chemo treatments.
Lest anyone think I am ungrateful for my treatment due to my most dark, depressing thoughts after chemo was over I am not! I am so glad that all these treatments are available to me so I can live but they are such harsh treatments. Your poor brain has a hard time trying to accept the fact that this could be good for you in the long run!
I am so glad Jaime is coming next week. It will do me good to have my family nucleus around me for a few days. I shall siphon off all their energies to push out all the darkness that is trying to get a foothold on me! That actually sounds kind of sinister doesn’t it! Maybe I should rephrase that to “absorb the extra energies that I know they will be sending my way.” Is that better? I think I watch way too much SciFi!
April 14 – I feel the need this week to write every day. To chronicle the end of this chemo so I always will remember. Not that I am likely to forget all this! However your memory can play tricks on you over time so this is my guarantee of the facts.
Very tired yesterday, partially from no sleep but also a very numbing tiredness that placed everything in slow motion. Finally, as I was sanding (I hate to sand wood!) and tried to fall asleep I decided that I needed to just go ahead and lie down for a nap. Dragged to chaise lounge over to a window in the new studio, got me a blankie and pillow and crawled onto it just collapsed. I could feel my heart racing a bit from the exertion of making my “nest.” Slept for about three hours, Harold came home and was out there to check on me a lot but I never knew he was there. Woke up, finished my sanding and worked in the garden for two hours! I would say the nap did me good! Stayed up late drawing a new Santa, went to bed and slept all night – no visit from Lucinda Faye either! Hurray! I don’t trust her though, so am keeping vigilant as I am sure she will try to sneak back to annoy me!
As you can tell, my mood is steadily improving. I am sure it looked as though I was beginning to cross over to the “Dark Side” but never fear, Hope blooms eternal in my soul! I really think you must confront and acknowledge those dark thoughts though or they will eventually consume you from inside. For me Hope is the stronger of the two and will always prevail and emerge the victor of any battle between the two. I mean, I have Brenda Braveheart and Kerrie Kickass on my side and who could ever totally vanquish those two personas!
My hair seems to be doing odd things. It does seem to be filling in some but it is all stiff and going in about fifty different directions! Very gray this time! Good thing I like my wigs! Eyebrows continue to disappear, have maybe two eyelashes. Rest of body hair is scanty. I am not very “hairy” to begin with except on my head so facial and head hair were my major concerns. Not having to shave my underarms was actually a plus!
Okay, here is a total bragging thing! On the newsstands now is the May 2006 issue of PaintWorks magazine. Look first on page 34 and you will see the beginning of my latest article titled, “Simply Elegant Cover to Cover – Blue Tulip Book Box.” I am very proud of this article, but wait, there is more……………………continue on to page 39 and there is a before and after of Jennifer’s kitchen! I presented the idea to Jennifer when she wanted to so something really jazzy in her kitchen, she did all the choosing of the artwork (vintage ad posters) painting and varnishing, adding new hardware, hanging of cabinets, etc. All I had to do was measure the posters, cut them up and glue them back on the doors. Guess who had the easy part????? She also painted the walls, Harold installed new lighting that she had picked out and shortly she will be redoing the floor herself. If you can’t find a copy of the magazine on the newsstands go to my regular website www.margotclark.com and click on Magazine Articles and it will be the first one shown. Should you want a copy of your own you can go to www.paintworksmag.com and they have ordering info there. Jen has been dragging her copy all over showing off! What can I say, like mother, like daughter! What’cha think? We know Jen’s kitchen is not everyone’s taste but you have to admit it certainly makes and impact! I showed the magazine to the last group I taught and when Jen came that afternoon they gave her a standing ovation for her creativity and skill. Needless to say, she was very pleased and proud.
April 24 – I know it has been at least a week since I wrote anything. Jaime was here and the time just seemed to fly. And……..nothing really dreadful happened.
I was very tired after my Herceptin treatment last week. I see the oncologist tomorrow and will ask if that is a side affect or if I am just all over tired from all the chemo drugs that have accumulated in my body. I also had to get a Burning Aranesp shot! I thought I was all done with those! But alas, my counts went down just a wee bit and the nurse said they would drop even more but that she would check with the doctor and when I saw her coming with the shot I saw the writing on the wall or to be specific the pain in my tummy! Actually wasn’t too bad, just a quick burn, I kept right on talking to her instead of scrunching up my face! She said that usually you have to come in once a week for about a month after chemo ends to get the shot on a weekly basis until your counts come up and stay up. Where did I miss that bit of info?????????????? Where is this break between chemo ending and radiation beginning?????????????? I will find out more on that tomorrow.
That wretched Lucinda Faye is making quite a nuisance of herself! Last Thursday night I had twenty, yes twenty, (I counted!) muscle spasms. Not full blown cramps but certainly enough to keep waking me up. That is really why I have been so tired I am sure. The last couple of nights I have slept all the way through and had the cramps when I woke up! Maybe I will figure this all out when the last cramp comes!!!!!!!!! It has been two full weeks now since my last chemo treatment and I am most ready for Lucinda Faye to be on her way! She is mean!
Hair is beginning to fill in. Going in all different directions though! Very grey! Hmmmmpf! Will take care of that as soon as there is enough to go without a wig! I can actually feel the breeze blowing the hairs around. Okay, so it takes a pretty strong wind, not quite gale force, to actually feel it but hey, at least its hair! Going to keep my newest wigs though, I really love them, especially Fiery Fiona. I think I will order an extra of her just to have on hand! Have about six eyelashes, looked like more so I tried some mascara – not good – then I could really count the six of them! Eyebrows still very short and very thin.
Mood – I am feeling pretty normal these days. The Dark Side seems to have sunk back to where it usually resides. Although I am sure that when someone says to me, “Aren’t you happy that your chemo has ended?” and they get my tirade, they are sorry they even asked! I am trying to tone it down a bit but I feel very strongly on that matter and think people should really know how someone feels. I think a more appropriate sentence would be, “I am sure you are feeling better/relieved/ now that the dreadful chemo part is over.” This crap never ends unfortunately, and I will apply the word “Happy” when I reach my ten year survivor mark. Oh, oh! I feel the Dark Side sneaking in! Not residing too far under the surface it seems! Apparently I need to give it a name – Dark Side Denise. I hope she does not decide to hang around!
Building – Well………….Harold is installing the garage door to his workshop today and has almost finished all the air conditioning ductwork. That means we can secure the building! The cats are not going to be very happy at all. You could see them getting more and more annoyed as each new window and door were installed! Yesterday I went from being Greta Gardener to Construction Connie, more specifically Drywall Donna! Lordy, now the personas have personas! Anyway, my job will be finishing the tons of drywall that has to be installed. We needed to finish the area behind the air conditioning unit before it is installed so I got to practice. To be truthful I watched a lot while Harold demonstrated. I did climb up on the ladder and do the edge of the ceiling though and we have all vaulted ceilings in the addition. I did all the screw holes myself but Harold had to show me how to apply the joint tape. All that sanding is not so fun, I must say!
I have a special request. A woman wrote to me yesterday that had just found the journals and has begun to read them. She told me about her daughter-in-law who found a lump when she was twenty-six weeks pregnant! She then had a radical mastectomy at twenty-seven weeks including lymph node removal and is getting her chemo port installed today. They will be doing weekly ultrasounds of the baby and hope to get him to thirty-six weeks before having to deliver him. This woman also has three other small children. I know there are so many deserving people out there who need prayers and it is hard to pick one over another to write about here in my journals, but this lady and her family really need some extra help, I think. I cannot even begin to know how they must be feeling and I have been through it twice! Could you please add C/T to your prayer list?
April 26 – Saw my oncologist yesterday and must write while all is still fresh in my mind. My main question for him was I wanted a simple, one sentence explanation of why my cancer came back. He actually gave me three so I will give them to you in the order he gave them to me! First one was that he didn’t know for sure, that you can never know for sure. I told him that was pretty straight forward! Then he told me what it could have been – a left over cell from the first time around but he really did not think that is what it was. Lastly he told me what he believes happened. He believes it was a new, primary cancer in the small amount of breast tissue that was left after the mastectomy. He said to consider the remaining tissue a “mini-breast.” It was not metastatic, meaning it had not gone to other organs. He said the first time around, even now, treatment would have been the same based on the findings from that surgery. No radiation would have been scheduled. He said that the new prime cancer was probably the reason for the difference in the Her2 findings, negative the first time and positive this time. If I had been positive the first time I would have been placed on a trail for Herceptin with no guarantee that is what I received. Since I had a lumpectomy this time (actually two) radiation is the next step. Lucky for me and all Her2 positive women, Herceptin (cancer anti-body) is now available to go along with standard chemo treatment.
He has a wonderful nurse, Nurse Melinda, and she spent some time with me talking about the upcoming radiation. She was surprised when I asked about being nauseated (remember, one of the oncology nurses told me to ask for anti-nausea medication from the radiation oncologist). She said I should have no nausea at all, that if they were in the stomach or colon area then yes, and if they were in the throat area then I would probably have some problems swallowing but in the chest area right under my breast I should have no problems besides mild fatigue. Radiation stuff begins next Tuesday so I will begin my writings on radiation treatment and what all it involves. Still no Vitamin C and I am to stop taking my multivitamin until radiation is over.
Had a long Herceptin treatment today, one an half hours, this begins my three week interval treatments. In eighteen weeks I will get another MUGA scan for my heart and if all is well treatment will continue until November. If there has been a change for the worse then treatment will have to stop. Keep your fingers crossed that I am fine as even though I hate to get poked and hooked up to an IV drip every three weeks I would like to get the maximum benefit from this treatment.
No Burning Aranesp shot today and no more scheduled!!!!!!!!!!!!!!!!!!!!!!!!! Hurray!
I will see my oncologist again in nine weeks. Mainly because of the ongoing leg cramps and numbness. He said it was unusual that the cramps lasted more than a few days after getting the Taxol. I didn’t want to get into my whole “persona” thing but I think Lucinda Faye is trying to make a permanent home here! Maybe the problem is escalated since I am prone to those leg cramps anyway when I am not on chemo. Although, getting a massage every month, keeping well hydrated and drinking a four ounce glass of tonic water every day had been working just fine up until the Taxol. Nurse Melinda recommended staying on the Magnesium supplement even after the leg cramps stop. The numbness is not really too bad, it has gone to my hands but I am still able to draw, paint, type and garden so it has not stopped me from doing anything I want. Foot numbness is about the same. It is there, I am aware of it, but it causes me no problems and will begin to go away.
Really, aside from the cramps, occasional bouts of being really tired and losing my hair (again!), and being really, really inconvenient of course, the physical part of this second time treatment has not been too bad. I am going to rein in the mental part as I am tired of dealing with it and am ready to get on with things! I hope that statement helps someone faced with a recurrence. Physical treatment was definitely not as hard as the first time even though I had sixteen chemo treatments this time as compared to four the first time and twenty-two Herceptin treatments with seven more months of Herceptin to go. Life continued, and continues on, and I only had to cancel one trip during the whole time and that was for the upcoming radiation treatments.
May 2 – Just returned from seeing the Radiation Oncologist. Am very weepy at the moment. He and his nurse were very thorough at explaining what would be happening and I was fine as long as I was there but when I got home and it all sunk in and Weepy Wanda and Feelingverysorryformyself Francine just moved right on in! I have to go back on Thursday (this is Tuesday) for my “Simulation.” This is where they will give me a CT scan (no injection for which I eternally grateful!) that will determine my “treatment port” of “field” which is the exact place on my body where the radiation will be aimed. I will give a full report when that is done instead of trying to remember all that was said to me today. This is like before when someone said they had chemotherapy and said nothing else. There seems to be a whole lot to this radiation business that I have not heard before!
Radiation will last for six weeks, no weekends or holidays. Sounds like a job proposal! Weekends give your “good” cells a chance to renew. I did find out that I will have radiation on my whole left breast from my collarbone, to the lymph nodes in my left arm, to under my left breast. It is a much larger area than I had imagined it would be (I am sure that is why my two “friends” came to visit me!) He said I should notice nothing for about the first two weeks and then I may notice some skin irritation. They will give me creams as I need them, the nurse said everyone is different so there is no sense in stocking up now until we see what happens. He said there will be no nausea and no need for the Burning Aranesp shots. Those are definitely “good things.” On the downside towards the end of treatment I may notice some problems swallowing since they are up near my collarbone but he did say “might” and not “will be” so I am taking some comfort in that! Also, he said they use very sophisticated equipment so as to minimize the damage to my heart and lungs. The nurse said something about them creating a “lead shield or casting” of my body shape that will protect the areas that are not to get any of the radiation. Sounds a bit scary! After he examined me he went off to call my medical oncologist for a conference and I sat there (in the lovely, so-very-trendy, hospital gown!) hoping against hope that he would come back and say that they really thought I did not need to have the radiation. Of course that is not what he said at all – that is when he told me how much of an area he would be radiating.
Are you up for a mental picture?????????????? If you are easily embarrassed you might want to skip this part! When I first got here the nurse took my face photo for visual reference (Fiery Fiona was the pick-of-the-day!). Cool. When the doctor was through with his exam he needed photos of the two cancer sites on my chest area (and I would imagine a “before” photo to protect them from someone saying something happened to them from radiation treatment that didn’t really happen!) and I had to put my hands on my hips, (no shirt or trendy hospital gown, just me and my black jeans) so he got good, accurate visuals! I must say that felt a bit odd. See, no modesty left whatsoever! It only felt odd, not embarrassing!!!!!!!!!!! I was sitting down and I asked him if I could stand because then the fat roll would be flatter and I guess he thought I was kidding because he kept on shooting – but I was dead serious! I mean, the Perky Twins look just fine but who wants tummy fat sharing the photo with them??? Certainly not me! Hmmmmppppffff! So now in my file is Fiery Fiona, The Perky Twins – Polly and Dolly and………..Tanya the Tummy! Just great! He did comment on what a great job Dr. J had done with the reconstruction. He thought the reconstruction was done by a Tram Flap – muscles from your tummy pulled up through your rib cage – looks and feels more natural but really major surgery – and was surprised that the saline implants looked as good as they did. He also said he did not expect any problems with the implant and that maybe my skin may thicken up some and feel firmer but cosmetically I should be fine.
Onward. After they finish with the Simulation, may take anywhere from a half hour to two hours, all the info goes to the Dosimetrist who plans and calculates the proper radiation dose for my treatment. Then on to the Radiation Physicist who makes sure the equipment delivers the proper amount of radiation to the targeted site and also determines the treatment schedule that has the best chance of killing any stray cells that may still be lurking. That all takes a couple of business days to complete and then someone will call me to set up my schedule. I am going to go for afternoons as I work better in the morning and once I leave the house I cannot get back into the “groove” of work! If I start to get tired later on I can come home and nap.
Here are some facts about radiation from a booklet they gave me today.
That is about the extent of my knowledge at the moment. I feel better now. I guess all I had to do was write it all out. Poor Harold was here when I got home and I still haven’t told him how it went! I just didn’t want to talk about it then. Now I will go and fill him in on all the details.
I saw the surgeon yesterday and he says all is just fine. He was checking for any sign of cancer recurrence in the scars from the surgeries in October and November. Said he will see me again when it is time to take out the chemo port.
I know this one is a long one as I have not written every day. But I do have a photo! Not me in the wigs just yet. I got a new one yesterday in the mail. I am calling her Stylish Stella! Spiky, of course, and red! A bit longer than the others. Came with a nape extension but it feels like I am wearing a hunting cap so off that went! I also have no neck to speak of so an extension is just not necessary! Also got a back up of Fiery Fiona! I really like that one and plan on keeping my hair short and wearing the wigs. I know I said that last time, too, and when my hair grew in they were too hot. We’ll see. I like these new wigs so much and they are so much lighter than Sassy Simone was that I am hoping they will not be so hot to wear. My hair is filling in and growing a bit more. I look like a little old man with bristly grey and brown hair! Look a bit like a pinto pony! Won’t be going wigless anytime soon I can tell you! Even if this stuff was red it would not look good!!!!!!!!!!!!
Before I forget, it seems that Constipation Cora is gone for good! It has been about two weeks now since I took any of the Senokot tablets. One day I was fine on my own and have been ever since! I assumed it would take a month or so to get back on a normal schedule but my body decided otherwise all by itself! Good to know isn’t it! Of course, now I REALLY have a lot of extra tablets!
Photo of the Month! An updated photo of the patio with door and window! No stucco yet, working on the air conditioning system right now. Have the beginnings of a wall between my studio and Harold’s workshop though. He got his garage door installed last weekend so we can now lock it all up tight. I enjoy going around and checking that all the doors are locked before going to bed. Just for fun as all the windows out there are open with screens since there is no air conditioning yet. It is like playing house! Cats are not happy at all! Doesn’t the photo look like a real house! This patio is my very favorite place to be. So relaxing out there and I can sit and appreciate all the hard work we have put in to this building.
Until next time,
Margot a.k.a. Keeper of the Perky Twins, Downer Dorothy, That Evil Leg and Foot Cramp Witch Lucinda Faye, Construction Connie, Greta Gardener, Constipation Cora, Brenda Braveheart, Kerrie Kickass, Dark Side Denise, Weepy Wanda, Feelingverysorryformyself Francine, Fiery Fiona and introducing Stylish Stella!
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