February 8 – The last update was getting a bit long and there have been new developments so I figured it was best to start a new one.
I went to the oncologist yesterday for what was to have been my first three month “healthy” check-up. Well………….. They took blood first and when the nurse came in the room to see me she said, “What’s up with your hemoglobin?” First I had to be sure I knew what she was talking about so I asked if that was my red blood cells and she said yes. I asked what was wrong and she said it was down to 8.8 (should be 11.7 at the lowest) and that I was down from 10.8 three months ago when I was there for my very last Herceptin treatment and my final doctor visit as an “active” patient. She asked me a ton of questions which in turn answered most of my questions on my list (you know I always go armed with a list!). I had down that I have been really tired - like chemo tired, get cold easily and then I am freezing from within and have a really hard time getting warm again, am dizzy after bending over and then standing up (checked my blood sugar and blood pressure and both of those were fine) and that my balance was still off. She was surprised I was not having headaches too, but I am not. All of that can be directly attributed to my being extremely anemic right now. If I get down to 8, I have to have a blood transfusion and I DO NOT want to do that! Doctor came in and asked me what I was up to since this was supposed to just be my “healthy” visit. He said either I am losing blood somewhere or I am not making it and we will try to rule out the first one. I have to go back in a week to see him again. So, they took a ton of blood and urine while I was there and I have to do some nasty stool specimens (Hemoccult serial test for routine screening for fecal occult blood) at home and either store them in the fridge until next week or send them in the mail. Store them in the fridge? In my nice new fridge where I keep my food????????????????? I think not! I told Harold what she said about the fridge storage and he looked horrified! He was much better when I assured him I would be mailing them in! Anyway, I have a brain scan next Tuesday (he gave me a Valium to take and Harold is going with me and stay in the room with me to help me stay calm) and I am scheduled for an Endoscopy consult (they will send a tube down my throat to see what is happening in my tummy) on the 20th but am on a waiting list (I have to call every morning to see if there has been a cancellation) to see if we can speed things up. Both the nurse and the doctor were amazed at the size “Dolly” has become. I have stopped the massage for the time being as it really hurts to jab my fingers around her edges. I digress, sorry. Anyway, last resort will be a bone marrow test if all these other things come back negative. PET scan was negative by the way – a ray of sunshine in an otherwise cloudy visit! By the way they were appalled about the water thing with the PET scan, too! When I told them I would have the test again but would not drink all that water they agreed wholeheartedly! Thank heavens! So now for this next week I am to rack my brain to see if I can remember anything unusual that I forgot to tell them about symptoms. I have no nausea, no vomiting, no diarrhea, no constipation, and no headaches. Other than feeling tired with no energy and being cold, I feel fine. I did pull down my eyelids when I got home and they are white inside, not a nice healthy pink. I will be adding checking my eyelids on a regular basis to my “to do” body maintenance list!
I had read this and asked about it and they agreed that there is a correlation between breast and colon cancer so if you are a breast cancer patient push for a colonoscopy to be sure you are covered at both ends. Sorry! I could not resist that sentence!!!!!!!!!!!!!!
Also, I saw on the news about the “new” test for breast cancer recurrence that the FDA just approved. I asked about it and it is the same test that is performed now but at a lesser cost. The current test, called Onxy something, costs about 3,000.00 and the new one is much cheaper.
Nurse Melinda was giving me a compliment on my hair and said is that a new wig and she was close to me and touched my hair and said with a surprise – “Is that yours!” I said, “Yes indeedy it is all mine!” That was fun!
As the doctor was leaving he passed me as I was waiting for all my upcoming tests to be scheduled and said to me, “See if you can behave for the next week!”
When Harold got home and I told him about all of it he said, “It sounds as if they are looking for leukemia.” I about croaked! I told him that no one even hinted at that and that I had not thought that until he said it! I did not need that little tidbit I can tell you! I doubt that though, as leukemia is something with white blood cells not red.
One more thing, I asked why I was not given the vaccine for Shingles since I was a prime candidate for getting them and the answer was as I expected, my immune system was already low and compromised so giving a vaccine was out of the question. Drats!
I don’t know how all of this is going to affect my upcoming surgery on March 7th to have the scar tissue removed and a new implant put in. Still messing around with the appeal to the insurance company on that one. I had to sign a form giving Dr. J authorization to act on my behalf and include a letter with my appeal and then had to take it all to the office manager so she can add a letter from him on the appeal and send all of it out of his office to the insurance company. What a pain. Someone at the insurance company was not paying attention at all as they had me down for bilateral, new implants in both breasts and it is only the one, and that I had cosmetic surgery to begin with. In my letter I made sure they realized it was not cosmetic, it was to save my life and to try and give me a good quality of life after and that it was only one, not both as they stated on the original denial. What a pain this is!
Melancholy Melanie was hanging around yesterday as was Weepy Wanda but I banished both of them out of my sight! Positive Pollyanna tried to come in and I kicked her out, too! I am not in the mood to be positive right now with all this facing me. Something is wrong we just don’t know what it is but I am not at the point where I need to be really down either.
Lordy, the saga continues…………………………….
February 9 – Grasping at straws today. Called Dr. J to see if possibly the blood I am losing is what is filling up Steroid Stella. That would have been a very nice solution, but alas, he said there probably was fluid inside but it was fluid from my body trying to fight the pain caused by the scar tissue forming. He said if it was blood I would be black and blue and my last surgery was in September of 2004 so it was very unlikely the two were connected. I also asked about what he was going to do with the stretched skin from the scar tissue problem as I do not want to ever have to wear a bra again and I do not want one firm with firm skin and one firm with wrinkly skin! I mean, I went through a lot to get the twins and I want them to look good until I am 105, after that I guess I won’t care! If they can’t get my blood count up there will be no surgery on March 7th as they will not do surgery on someone whose blood count is so low. That means I have to wait for May because I have a lot of travel teaching in April and need the three week time frame to be “down.” Geez Louise!
I don’t think I ever told you what the surgery would be for Stella Steroid, did I? I am scheduled to go in on March 7 and he will scrape all the scar tissue loose from inside, take out the implant that will be covered with scar tissue and put in a new implant. I will have to be “down” for the three weeks. Might even have those nasty drains (grenades, as Jennifer calls them) depending on the amount of fluid present. He will remove the chemo port then, too. After all the swelling goes down I will have to go back for any “nipping” and “tucking” that is necessary. He may make an incision around the nipple surgery and pull up any loose skin and then sew the nipple back in place. Sounds gross, huh! Remember, there is no feeling there anymore. Stella Steroid hurts because the scar tissue is pulling on areas that have LOTS of nerves!
Since I am being gross – I will just mention this lightly and then mention it no more. The Hemoccult tests are totally disgusting! I have had two children and have never experienced anything so disgusting in my entire life! How can little kids be so fascinated with their – well, you know!!!!!! I can’t have red meat or lamb or liver until I am done with the tests and my body is rebelling at having to do the tests so I still have one more to do and Harold snuck off today and got himself a hamburger! I saw him drinking out of a What-A-Burger cup and he realized it and got all red in the face. I told him I didn’t blame him at all, I would have done it, too!
February 11 – I am being very philosophical today. I was out working in my garden after moving some stuff from the old studio to the new and was experiencing some of that dizziness that I now know is from the low blood count. I just waited for it to pass and went on about my business. I was admiring all my hard work and I realized that if given a chance to trade my current life for a boring but very healthy life – I would choose this one! In a heartbeat, even knowing what would happen. Pretty amazing, huh!
February 13 – I survived the MRI brain scan! Harold went with me and stayed in the room and I took the Valium one hour before the test began. I was concerned the Valium’s effects would wear off before the test was complete but since I came home and slept until 3 p.m. I guess I would have been okay! I went to a different location this time for my MRI and this one uses the open MRI. It still comes down very close to your face but it is open at the sides. I was pleasantly surprised by that I must say! He did put a “device” over my head that he said would also take pictures as well as hold my head still and he called it the “Hannibal Lecter” mask (just picture that will you!)! I brought a pretty lace trimmed wash cloth with me to cover my eyes and that went on first so just in case I opened my eyes I would only see fabric. And it smelled like my house so that was comforting. Each segment of the test was about five minutes long. About three quarters of the way through he pulled me out and gave me an injection and then put me back in again for the last two segments of the test. The tech talked to me through the whole thing and I got to choose a radio station to listen to during the test. Of course, I chose hard rock! He tells me not to go to sleep if I can help it as you jerk unconsciously when you are sleeping. Was he kidding???????????? The machine sounds like someone is on the outside with a jackhammer! I asked the tech why the other location uses the tube instead of the open MRI and he said the tube gave better resonance but that my test was fine. No major panic attack, just uncomfortable from having to be still for so long, (an hour). I see my oncologist again tomorrow and they know that so hopefully they will try and get the results to him.
Harold and I went out to breakfast afterwards and I managed to stay awake, awake enough to buy a jacket after we ate! We were at Cracker Barrel. I swear I have gotten half my wardrobe there! Food is good but the shopping is great!
We dropped off the Hemoccult test at the oncologist’s on the way home and I ran into my doctor in the hallway as I was delivering my “treat” to the lab and he said the blood showed that I am not destroying the red blood cells and that was a very good thing. I see him tomorrow so I will find out more. I am hoping he will have some results from the Hemoccult and the brain scan so we can go from there to find the problem and fix it!
February 20 – I have been busy! Went back to see the oncologist again on the 14th, hemoglobin at 8.6, down from 8.8, but he was not concerned with that small amount. Brain scan results were – no change from six months ago so any “anomalies” the radiologist noted then were caused from chemo, not something else happening – wonderful news! Radiologist still wants follow up brain scans done for awhile, though. Since whatever the anomalies are, they are not affecting me that I can tell (geez, maybe I just don’t know it! Oh well, if I don’t know it, I can’t be concerned! No one has told me I am acting oddly!!!) Nasty Hemoccult test was negative so he is pretty sure I am not losing blood anywhere. Blood work was fine as was the urine test. There was no evidence anywhere of blood leaking inside. One more test, the Endoscopy to see if I may have a bleeding ulcer. The oncologist is pretty sure my bone marrow has just not had a chance to catch-up making enough new red blood cells after the year long treatment and then getting shingles on top of everything! Bone Marrow Suppression is the technical term I believe. I have started to get weekly shots of the Burning Aranesp again and this time I welcomed it! Anything to get me going again! Right in the tummy and it didn’t seem to burn as badly as before. Wonder why? Anyway, I go again tomorrow, get my blood checked and if I am up enough I will just get another shot but if I am not (and he feels I will not be up enough) I will have to have a blood transfusion on Thursday or Friday. I leave for Vegas to teach on Monday and he says I will feel better and he doesn’t want me to have to have an emergency transfusion out there! Me neither. I was in a bit of a panic when he told me about the blood transfusion last week as all I could visualize was hospitals and lying on a table, looking pale and wan, hooked up to massive amounts of blood bags. Of course I do not look pale and wan at all, ( I know I am missing out on extra sympathy by not ever looking sick!!!!!!) someone just told me a few days ago how great I looked! Cancer and its side effects do seem to make me look better. I do actually look better since I have had cancer twice than I did before! Not that I recommend having cancer as a way to improve your looks!!!!!!!!!!!!!!!!! Anyway – it seems that they will make all the arrangements and I will get the transfusion right there in the treatment center, I just have to have someone drop me off and pick me up. Maybe I can even get it through my port! Now that would be great news!
Have to change my surgery date to “fix” Gigantor Dolly. Only opening the gastroenterologist had is March 7, the day I am supposed to go for surgery on Dolly. Insurance still has not responded back after denying my surgery and all of us submitting forms and letters and I guess I could use the extra time to get my blood back up. If we do it the following week I will still have the three weeks at home that Dr. J wants for my recovery. The gastroenterologist said you could have a pretty good sized bleeding ulcer and not know it and I have taken aspirin for years on a daily basis for various ailments so he wants to see what is going on in there. Probably wouldn’t be good to have surgery if I had a bleeding ulcer! He started me taking Prilosec OTC to help my stomach even if I don’t have a bleeding ulcer, says anyone who takes aspirin products on a regular basis has a 20% chance of stomach problems and by taking the Prilosec or something similar it cuts the risk down to 5%. EEK! There is that 5% Club again, although this one I wouldn’t mind belonging to.
What a fun day! Before I saw the gastroenterologist in the afternoon I went for my annual Well-Woman exam. She said, “How are you?” I said, “Well, I have a gigantic boob, am severely anemic, the residual itching from the shingles is driving me nuts and I just now got a head cold. Other than that I am doing fine!” It was meant to be funny and she did laugh. Not about my ailments, just the manner in which I delivered the information. She did her “thing” and then proceeded to do a breast exam and when she lifted the sheet she said “Woe!” I said, “I told you she was gigantic!” Now, lying on my back they both point straight up in the air so there is no missing that Dolly is a pretty good sized gal! She just shook her head at all my latest woes. I really must rename the journals the “Perils of Pauline!” Good grief!
Poor Harold, he cannot keep up with what is happening on a daily basis! He feels it is all moving too fast. Not sure what he would slow down but it is a bit hectic right now. Have to get my blood up so I can go to Vegas and teach. They (doctors and nurses) know that continuing to work and have as normal a life as possible is the best thing for a cancer patient. And it is entirely possible to get me ready by the time I leave. And travel is part of my job. It is important to find out if I have a bleeding ulcer and Gigantor Boob hurts so I do not want to have to wait until May for that surgery and let even more scar tissue build up. I think Harold just feels overwhelmed with all of it since I just went in a few weeks ago for my three month check-up and all was supposed to be fine! Me? I am too busy arranging all this stuff to be upset and I NEED all of it sooooooooooooo………….. I am just so glad that it can all happen and not stop me from doing things I want. I just feel tired (except for Gigantor Boob and her pulling on all my surrounding tissues) so am not “sick” in a normal sense. It is mostly irritating to have to go to the doctor or have a test nearly every day (four times just this week!) as I really do have other things to do! Working all this medical stuff into my busy schedule is hard!
I did teach last weekend, a full day of classes, teaching “hot glass.” I was really tired by the time I got home but I did it!!!!!!!!!!!!!!!!!!
Vegas will actually be very nice this year. I only have a couple of classes and they are spaced far apart so I have plenty of time to rest in between. I am meeting friends for lunch on two of my off days so that will be great fun! I will have a whole day to myself to explore the trade floor which is really a treat. I am flying out late Monday and arriving in Vegas at 10:00 p.m. and don’t teach until the next afternoon. I teach again on Saturday in the afternoon and then I am heading for the airport to take a 10:50 p.m. flight home. I get in at 6:00 a.m. on Sunday and I can sleep on the plane so I should be fine.
February 21 – What a day! I went for my oncology appointment and my blood has gone down – again! Just .2 but it is down to 8.4 and not up. I was sure I was feeling better but I guess that was just wishful thinking. Got another shot of Aranesp in my tummy. The doctor said if I was not traveling and flying, he would just keep me on the Aranesp and watch me over the next six weeks as that is about the amount of time it will take to get me back up to where I am supposed to be. He said flying would be very uncomfortable with such low blood and I will be wiped out in Vegas and his recommendation was for me to get two units of blood tomorrow. It has to be done at the hospital and that is a bit unsettling, makes it seem more serious I guess. He said the side effects were that some people get a fever and feel bad for about 24 hours; some get a rash but most show no side effects at all. Guess what category I want to be in! He said he needed a hug today and he knew I needed one so that was so very nice of him. Sooooooooooooooo I had to go over to the hospital to get type/cross matched (to be sure I get the right kind of blood) and of course before I could do that they had to contact my insurance company to get an okay for the blood work to be done there as it usually is sent out to a local lab but for transfusions they need it all done in the same facility. Took forever but finally got it but……………..now we need an actual referral for the transfusion itself! The insurance company wouldn’t give it to the hospital, had to try and contact the doctors office, left a message and they woman at the hospital told me that after I was cross matched to go back to the doctors office and tell them I needed the referral or I would have to wait around forever tomorrow morning to get approval! Lordy! As I was sitting there waiting to have blood drawn for the second time today and after getting the burning shot in my tummy and thinking about having the transfusion tomorrow ole’ Feelingverysorryformyself Francine sneaked right in! Weepy Wanda was not far behind but I made her go away. Where the heck is Kerrie Kickass! I need her for tomorrow! Anyway, between a ton of phone calls back and forth I have my referral so I will show up there bright and early, Jen will drop me off since it will take between four and five hours!!!!!!!!!!!!!!!!!!!!! and she will come back and get me later on. They really didn’t give me any prep instructions other than how long I will be there so I am packing a lunch, taking drinks, a good book (Hannibal Rising!) and a blanket! And dressing warmly. So now you will learn what it is like to get a blood transfusion. Knowledgeable Nora will be taking notes tomorrow! You know, I would really like to fire Knowledgeable Nora! I have enough knowledge of all this stuff, thank you very much!
Spoke to Dr. J and surgery for Gigantor Dolly has been moved to March 14 pending my blood being at a good level. He has an alternative if I can’t get surgery in March because then I will have to wait until May and I am really uncomfortable at times. He would go in with a long needle and remove some of the fluid that my body has made to fight the scar tissue and maybe even puncture the implant (it is saline so my body would just absorb the liquid) to relive some of the pressure. Yikes!!!!!!!!!!!!!!!!! That sounds a bit scary. He said to make me look even for Vegas (I will have to wear jackets or something that will minimize Dolly’s generous proportions) I could stuff the other side of my bra to fill it out. Bra???????? I reminded him I do not even own one! I’d much rather wear a jacket!
February 23 – Blood transfusion is over! Whew! I must admit the very worst thing was that my back hurt from having to stay in either the bed or a hard chair the whole livelong day! I got there at 8:30 a.m. and left at 4:00 p.m. They got started right away, it just took forever. They were able to use my port so that was very nice not to have to have it in my arm. I did have to remove my shirt and put on a hospital gown so they could access the port easier but I got to keep on the rest of my clothing. That is always a good feeling in a hospital! You feel so vulnerable without clothing! I was attached to “Fred” all day, “Fred” being the rolling hanger for the bags of liquid – they named him Fred, not me! My big adventure was when I had to go to the restroom across the hall! Since I was only getting “packed red blood cells” and not whole blood or platelets, I also got a clear liquid that prevented the cells from being squashed as they reached the filter. Pretty amazing when you think about it. The nurse said that now when someone gives blood they separate it out into four different things so that four people benefit from that blood instead of just one. Pretty cool. So – go give blood. No one wants mine anymore but there are lots of people like me who can’t give it but need it. Okay, end of speech. I took my lunch (three drinks, an apple, two cookies, a sandwich and some cut up red peppers – I wanted to be sure I wasn’t hungry!), a new book and my own blanket – I wanted to be sure I was comfy and not bored! Good thing about the lunch, she said they ordered me lunch and when it came I was soooooooooo glad I brought my own. Whole wheat bread with wet turkey (I only like the dry deli kind – fussy I know, but I really don’t like wet turkey!) some grapes and a small salad with French dressing (of course about the only salad dressing I don’t care for) and some milk. I ate most of the salad, the grapes and had the milk with my home made chocolate chip cookies! I had a feast! Since I have gone on an on about lunch you can tell that was the highlight of the day! Jen came early and sat with me for a couple of hours and that helped, but of course as soon as she got there I got sleepy and I hadn’t been sleepy all day! I was in the Short Stay Surgery area, I assume in case there is an emergency you are right there and the care was excellent. After they hooked me up they checked vital signs every fifteen minutes for the first bag of blood and every half hour for the second. I had to wear a blood pressure cuff all day and it went off by itself every half hour so they kept a steady reading. I kept going down and I got a bit concerned but the nurse told me that it was because I was doing absolutely nothing and that the readings were fine. That’s about it. Thinking about it and worrying about getting a blood transfusion was way scarier than actually getting one! They gave me a sheet of possible complications to watch for over the next six hours but all I did was to come home, kick back, eat dinner and promptly fall asleep in my recliner! Harold woke me up so I could go to bed! Wonder when the energy kicks in! Slept well, and this morning I feel………okay. I still have the head cold and it usually takes a bit after I am up for me to really get going so I will have to wait and see I guess. They told me not to overdo (Moi! Overdo?) that I still need to rest before flying. By the way, flying with severe anemia can cause shortness of breath and chest pains as well as headaches because there is not enough oxygen circulating in your blood stream and the cabin pressure is not the same as on the ground. That would have freaked me out, I would have thought I was having a heart attack for sure! The nurses were surprised to learn how low my blood count was, they said I looked fine. See, I missed out on sympathy, again! I simply must get some rice powder to make me look pale and wan!
So, in a nutshell, for me, a blood transfusion was boring and hard on the back.
February 24 – A bit disappointed that I don’t feel better than I do but I am taking into account the head cold that I have and the gigantic aching boob! And I got a call from my regular doctor’s office that I have a bladder infection so am on antibiotics for three days for that! Geez Louise! And maybe I had some fever and flu like symptoms from the transfusion that are possible for 24 hours and because of the cold I couldn’t tell. I guess I thought I would be full of energy from the transfusion. I am more alert and I do feel better just not as much as I expected. They did tell me not to overdo so I guess I expected to feel like I could “overdo.” But hey, I’ll take even a little better! I went to bed last night because it was late, not because I was so wiped out so that has to be an improvement!
I will be glad to get Dolly “fixed” as it feels as if some of the scar tissue has attached itself to some muscles so there is a lot of pulling involved and makes me catch my breath and sometimes make moaning noises when it grabs me unexpectedly (actually sounds more like a grunt but that is soooooooooooooooo not feminine!)
Lest you think I am languishing somewhere feeling sorry for myself (I banished Francine and Weepy Wanda after the transfusion got started!) I am not. I am puttering around in my wonderful new studio, painting some stuff that has to be done before I leave for Vegas, getting ready to leave for Vegas and today need to repot some plants and do some yard work. So…..there is no languishing going on, just don’t have as much energy as I had hoped for. Probably a good thing in my case, huh!
February 25 – Well……………….I felt a whole lot better yesterday, I mean a whole lot! When I wrote in the morning I did not feel so hot and was very disappointed but after being up a few hours I saw a marked improvement. I think I did have the fever/flu symptoms for the first 24 hours because I feel just fine now. Worked inside in the morning and then I worked out in the garden for the whole afternoon, not crazy, just puttering around and tidying up. Not even the inkling of needing a nap! If the boob didn’t hurt I would be A-okay! It does feel good to feel good again! Now I can’t wait until I am all the way back up to where I belong. Yea!
It is now the end of the day and I still feel really good. Just the slightest bit tired. This I can deal with!
Okay, I have to go and finish packing as I leave for Vegas tomorrow. Traveling Tracy has things to do!
Photo of the Week –Click on the image for larger view. Now you get to see what the view is as you open the door. Are you just too impressed!!!! Whoo-ee it is still so very exciting to me. I was getting ready for Vegas, working on a magazine article, taxes, setting up a photo shoot, preparing for the fired glass class, sewing for Vegas and working on getting seminar info out and it was all so easy as I just moved from table to table. I love it, love it. love it! The door is in the middle of the long outside wall and there is another window over to the left that you can’t see in this photo. The cabinets on the left hold all my watercolor, oil and ornament supplies. The thing the TV is on is my flat files for all of my drawings then on to the right you head on into the office area. I have six of those wonderful lace covered tables to work on plus my drawing board. In the upcoming photos I will revolve around the room so you can see all of it. I read a great quote and this is a good place to put it – “There is always, always, always something to be thankful for.” I am thankful every day for this space.
Until next time,
Margot a.k.a. Melancholy Melanie, Weepy Wanda, Feelingverysorryformyself Francine, Kerrie Kickass, Positive Pollyanna, Steroid Stella, Gigantor Dolly, Gigantor Boob, Knowledgeable Nora and Traveling Tracy!
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