Thursday, January 31, 2008
The really good news to share is that the pathology report from the surgery shows that the margins were clear from any cancer cells. This is good news. It means that the surgeon was able to stay as far away from the cancer as she said she wanted to, and that whatever cancer was in me, is now out of me. (Although no one can promise you that a stray cell or two-thousand hasn't been lingering somewhere hiding out in an effort to survive through chemo. That's why you can never be sure if you've been "cured.")
Thanks to St. M's and Jeannette for the lovely dinner, visit and lunch for tomorrow. Your support is greatly appreciated.
Will check in as I'm able to. I'm definitely different forever and the surgery might be no biggie for the doctor doing it, but it's plenty big enough in my book. I'm weak but feeling a little better each day.
Tuesday, January 29, 2008
The pathology specimen has been is being sent to MD Anderson, as prearranged.
But, the big news is . . .
The Left breast weighed in at 3.7 pounds, the Right at 4.5. Her girls weighed more than my girl (she was 7.5)!
I'm hopeful that she'll be staying with us tomorrow night.
Monday, January 28, 2008
Please keep her in your thoughts and prayers. I know I appreciate them, and so does she. Also thanks to those who kept vigil with me in the waiting room. I was glad to not be alone there. I'll keep you updated here if there is any significant news, and again when she comes home. I'm looking forward to having her here with us again.
Sunday, January 27, 2008
Somewhere, wherever "they" are, they consider this procedure a 23 hour stay. I'm hoping to stay on Tuesday too so Jenn can have a day to rest up at home before she has to come get my butt and take me back to her house and where the drugs won't come in IV.
Thank you Pam for the Vacation in a Bottle! I'm going to look forward to that. My tastebuds are working better these days and when I can putter around and do some stuff for myself, I'll make that treat up one day.
To everyone sending prayers, good thoughts, and white like, or whatever you believe in, thank you. I appreciate so much all the kind folks that have so generously been praying, etc. already. Your efforts are every bit as important as what the surgeon does.
I can feel my energy starting to come back. I am not quite as worthless as I have been being. Hazel and Fred R. -- thank you each for your special "goodbye" to the "girls."
Peace to you and all you love.
Saturday, January 26, 2008
Just taking care of business.
OK, in a world where recycling is encouraged I have to pause and wonder, "What does a boobless woman do with her old bras?" Can the falsies be put into a regular bra? I don't know. Do I need to go around and find someone else that's a 48DD? I think I'd get slapped if I asked someone what bra size they are. If you're anywhere from a 44 D to a 48DD I might have some bras I can send you. I'm thinking that when I buy my new girls I only want to be a C. If there's anything I wished over the years it was that my girls weren't so heavy. So, I see no reason to get big, heavy girls when I have a choice. Just for fun, you can vote.
Friday, January 25, 2008
The MRI results indicate that I've "jammed" (a layman's term for severe sprain) the left shoulder joint. It's a result of the ligaments being overextended when I hit the joint. The other aspect of the injury to that joint is severely bruised. The doc said on a scale of 1 to 10, it's a 10, but the bruising is inside; it's not like the skin is purple. It's all internal. So that's good, I guess. I once injured a tendon severely and it caused me years of grief. I gather that ligaments however, are more stretchy and that the bruising will heal slowly, and so I'm hoping that the shoulder will heal simultaneously with the surgery.
I talked to the coordinator at MDA and she's talking to the pathology lab at Northside Hospital to ensure they get the tissues to MDA in the way they need it. There is only one opportunity to "harvest" the tissue so we have to get this right.
Good news on the hair front. It appears that I'm getting the first short, short hairs on my head. I've declared that I will have fuzz in February. What I have now can't be considered fuzz, but I'm getting there.
Thanks to Jeffe, and Connie for your kind calls today. Randy, you're becoming a pro with your cards! Charlene, the Letter of Intent is in the mail! You should get it Monday.
Thursday, January 24, 2008
Jenn, Jewel and I got home about 5PM after doing errands all day and seeing the doc. I'm planning to read a bit and sleep. As long as I don't put my arm in a particular position, it's within pain parameters. If it's in THAT position that makes it hurt, I'm hanging from the chandelier and screaming.
I've coordinated pathology specimens being sent from Northside to MD Anderson, talked to my insurance about what's covered and what's not, taken checks up to the Board of Education to cover my benefits for this past month, and filled out the longest intake form I've ever seen at the orthopaedists' office. Geeeeezzzzzz.
Wednesday, January 23, 2008
I went and had the MUGA, and should find out what my ejection fraction is at this point in time before Friday. It will be helpful for the surgeon to know if there's been a change. It was 66% before chemo started, and 45% is considered within normal range. So, we'll see what the new normal for me is, or if there's been any change.
OK so I rush back home because they're going to deliver my new bed today. About 10 minutes after I get in the house the deliver guy calls. So I just did make it. They took out the old bed, and so I had an opportunity to really clean the dust and odds and ends that had migrated up under the bed. There's just one problem. I tripped on the support slat, and fell over like a giant redwood going down. The siderail scraped some skin off my right ankle, but the real deamage was my left shoulder. I hit it straight on and heard a crack. It hurt. It still hurts. I can't move it in certain ways. But the ER doc says the x-rays do not indicate a break. He does recommend I see an orthopaedist tomorrow. I know that something bad is wrong. I don't know what, but it's not good.
I have no idea if this will impact the surgical plans for Monday or not. I'm totally frustrated with myself for being such a klutz and for increasing the immediate suckiness of my life. Updates to follow as I figure out what the heck I've done to myself! Geeezzzz. The good news is I really, really like my new bed.
Tuesday, January 22, 2008
Saturday, January 19, 2008
Friday, January 18, 2008
Jenn, Eric, Liam, Jewel and I went to one of those fancy Japanese steak houses. It was spontaneous and Liam thought it was great fun. He loved watching the chef do the cooking on the grill in front of us. The fire of the oil on the grill was a big hit with Liam. He kept asking the chef to do it again!
I'll write more tomorrow. Especially if we get snow!
Thursday, January 17, 2008
Not wanting to be on the roads with the people of the #1 catagory above, BUT having a 7:30 AM surgeon appointment in North Atlanta the next morning, it was finally decided that Jenn, Jewel and I would go spend the night at a hotel very close to the surgeon's office so if the weather made travel difficult the next morning, we could still get there. So we packed in about 3 minutes, threw ourselves in the van and zoomed through snow that was so heavy and wet that it hit the windshield with a thud, thud, thud, thud, thud the whole way there. Extraordinary in Georgia. Sleet is much more common.
So we spent the night in the 2nd to last room available at the Mariott, a suite. But it was close enough to walk to the surgeon's office if it was slippery icy in the morning. When I got up I went out and checked and it was still pretty with the snow all over the cars and the grass / trees, but at exactly a temperature of 32 degrees, the roads were not a problem.
We talked to the surgeon today. Mostly she oogled and ahhhhed over Jewel, but there was discussion about where the incision would be, what it would be like, and so forth. I asked for a minimum of pleats and craters, but was told that the surgical outcome was greatly influenced by how the fat tissue was deposited and that healing patterns were unpredictable to a great degree.
The really funny thing was the knot on my arm that my oncologist speculates is a lymph node. Two different breast surgeons looked at it and both speculated, "I have no idea what the heck that is." The oncologist though she would surgically remove it. The surgeon goes, "I don't surgically remove things I don't know what they are." So she asked me to go to a hand surgeon to see what s/he thought about it and potentially have it removed. They did ultrasound it to see if it might be a thrombosis (blood clot) or try to discern if it was lymph tissue, but ultimately the answer was, "What the heck is that?"
The surgery for the removal of both of the girls will be January 28th at Northside Hospital. Elvira has shrunken down from 2.3 cm before chemotherapy to an impressive 0.9 cm now. So it is less than 1/2 it's original size as a result of blasting it with the chemo. With luck it will make it easier for the surgeon to remove any and all cancer with the mastectomies. The mastectomies will be "simple mastectomies." No removal of chest wall or muscles like in the old fashioned radical mastectomies. I'll only be in the hospital a day or two, maybe three at the most.
We went by the Women's Shop in the hospital and when I'm IN the hospital recooperating, they will come to my room and fit me for the compression bra and camisols that help hold the surgical drains and so forth. That's a nice service. Later, when things are more healed I get to buy whatever kind of breast prosthesis I like the best, but it's also influenced by the smoothness (or lack of it) of the healed skin. So everyone think positive thoughts for smooth results with the least amount of puckering and cratering possible. My personal level of fatitude does make it more challenging for the surgeon.
I'm really, really, really, really tired tonight, so I'll write more tomorrow. We spent six hours between the doc, the hsopital's various departments, etc. We were able to get all pre-ops done today so that we don't have to go back for another trip up there just for that. YEAH!
Tuesday, January 15, 2008
My cleaning lady and I today worked hard on my bedroom. This room is where I have lived for the last several months, and to say things had deteriorated over that time is a vast understatement. God bless her. She and I attacked the bedroom for two solid hours, taking out probably ten bags of trash, and definitely making the place much more pleasing to relax in. I knew things had gotten cluttered, but the abundance of trash was a little startling.
Tomorrow, as long as there are no emergencies, Jenn and I are going to attempt to cast my breasts. It's a bit of a logistical issue, but I have faith that we can figure this out.
Monday, January 14, 2008
I am frustrated beyond belief at the moment. Sometime on Christmas day my keys got picked up with the trash, or lost somehow / someway that I don't understand. However, I had a spare set, and I've been using them. In the shuffle with the cars today, somehow, someway my chemo-soaked brain allowed me to lose my back-up set of car keys for my house and truck. I backtracked to the three places that I had been to ---- nada. How can I lose both sets of my keys (to EVERYTHING) in the matter of three weeks? I don't understand it. All the other keys are easy to replace, but my truck will have to be towed to the dealership to have a key "programmed" for it -- their computer has to talk to the truck computer. This is just .......ing unbelievable! I'm so tired, congested, disgusted, frustrated and sick in body and heart that I wimped out of EfM tonight and I've been able to go all through chemo except for once, I think. I feel like I'm just going crazy.....ok, well maybe crazier.
Gosh, between my own coughing and congestion and my stress right now, I'm flat as a flitter exhausted. St. Anthony: I'm calling out to you. Please help me to find one of my sets of keys, please!
Sunday, January 13, 2008
I talked to Betty this morning and prompted her to do a breathing treatment. I haven't talked to Jenn but I'm sure that she did the same for her today that she did yesterday. I will talk with her caregiver in the morning and see if she has improved over the weekend, or what. For what it's worth, Betty sounded decent on the phone.
Saturday, January 12, 2008
The cough stuff the doc gave me allowed me to sleep last night and that was very welcome. It's been probably two weeks or more since I could sleep through the night because of the cough. Sleep helps to heal a lot.
My tongue is less sensitive than it's been being. It still tingles like mad when I put anything in my mouth, but it feels like it might just stay in my face and not zoom out like a rocket anymore.
Friday, January 11, 2008
However, I can imagine worse. The cough that has been plaguing me for several weeks now has gotten so bad, that I'm gagging to the point of hurling. So, at 4am while I was making acquaintance with my trash can, I got to thinking I need to check back with the doc about the whole cough thing. I dropped him an e-mail. I'm telling you something like a minute later I got a response from him. So while fungus probably can't grow on me because of the Diflucan, I am now on STRONG antibiotics and some cough stuff that's stronger than Delsym.
I FINALLY had enough energy after yoga today to get Betty's groceries. She is in a bad way. her caregiver took her to the doc and her oxygen is too low and her COPD is exaserbated so she is coming home for the weekend, but if not significantly improved by Monday, she'll have to go to the hospital for a higher level of care.
I'm grumpy, tired, and sick of coughing! I hope these antibiotics actually work and cure whatever the heck it is that is causing this cough!
Thursday, January 10, 2008
Well you see if you get blasted with rounds and rounds of toxic stuff that kills off benificial as well as cancerous cells, your "flora" on and in your body gets all out of whack. In this case, the FUNGUS candida (the same stuff that causes you to get an itchy crotch sometimes) set's up house in your mouth (a nice warm, moist environment) and starts moving in friends. I've seen thrush in babies (they don't have an advanced immune system usually when they get it), but I had not seen it in an adult.
At the onc's office the nurse asked, "Is your tongue coated?" Yup. "Does your tongue hurt?" Yup. Well then you have thrush. I'm on diflucan (when you get it in the crotch you usually get one pill, maybe two). Since it can be more systemic for people on chemo who have really been blasted, I get to take a double dose today, and another pill for the next week! That's like MEGA diflucan!
So, I haven't been messing around. I've just been laying here being a wussy while the chemicals killed the "good" balance of the germs in my mouth. :)
THAT is how you get thrush as an adult. If left to itself, it can cover your entire intestinal tract and get into your bloodstream, so they consider it an especially nasty side effect.
And now you know. :)
YEAH! Tomorrow is yoga day.
Today's accomplishment was getting all the supplies to make a cast of "the girls." I don't know if I'm going to put them on the coffee table or anything, but I'm going to attempt to make a cast and then make a plaster bust (quite literally) of my girls, before they take them away from me. I want to remember them as they were. Jenn says I'm wildly overestimating the amount of supplies necessary to do this task, but we'll see.
I also now have some peroxide mouthwash to attempt to treat my cough, and some Delsym (the best cough syrup in the world that doesn't have codine in it). Between the two maybe I can get rid of this cough. It's getting worse, not better! I don't think coughing AND having significant surgery are compatible. I don't want to be coughing much when I'm trying to recover from surgery.
Wednesday, January 09, 2008
No plastic surgeon in their right mind puts their less than perfect work on the web, so finding a picture of what I'm afraid I'll get, has been difficult. But, I'd say, this would be the fear.
The little circle on her upper right side is her port, and they're removing mine when they do the mastectomies. No need for any extra anesthesia or seperate procedures by taking out the port at the same time. Some women opt to get a tattoo over their old port placement. That's something that I'll have to think about a different day.
Fat people don't heal as well as well-proportioned folks, so I already know that I'm likely to have healing issues. I was astonished to find that one of the ladies at my support group was on the operating room table for five hours for her bilateral mastectomies. That's a tough gig for a fat, old girl like me, is my guess.
I don't want to have a negative attitude, but I do think it's important to be realistic about what can be accomplished. I don't want to get myself prepared to have smooth, and get wrinkled and puckered. I also know I have little to no control over what happens so I need to be accepting. Most surgeons talk about leaving dog ears and pie dough (really) that can be "revised" later. I'm not wild about the idea of "revision." I'm much more into getting it "right" the first time.
I have to trust that I've picked the right surgeon, and that she will do her best, and that her best will be something I can live with, and that I get to live with her work for a long time.
I think I have thrush in my mouth. I'm not sure. But I sure do have a sore tongue that is "coated." I've actually never seen thrush in an adult though, so I'm not sure in the least. Maybe I burned my tongue on something. Hard to know.
Had an x-ray this morning to see if we can figure out what's causing my persistent cough. Probably had my last massage before my surgery today too. It'll be a while before I can lay on my tummy!
I'm expecting the scheduler to call from the surgeon's office in the next short while and let me know a tentative date for the surgery. I'm not very good at being stoic at this point. I'm chicken. It's gonna hurt!
Tuesday, January 08, 2008
Jenn and Jewel and I took a class tonight on making wirewrap jewelry. It was interesting and different. It was a nice diversion from everyday life.
I talked with the oncologist today about my persistent cough, and so I have to go get a chest x-ray tomorrow. Luckily I can just go to Higgins Hospital here in Bremen for convenience.
Thankfully I'm feeling a little better today, especially with less steroids in me. It's only up from here, eh?
Monday, January 07, 2008
The BIG envelope had a BIG book with inspirational pictures and stories of women who have encountered breast cancer. Something for the spirit. There was a fat book in there too, with practical medical information in it; something for the mind. And then in the box, were ginger snaps; something for the body. What a gracious soul to share so much with me!
Today has been a hard day with lots of Neulasta pain in my large joints, a hard night of sweating and insomnia from steroids. I've had thick phlem causing me a lot of coughing despite drinking lots and lots of fluids. In short, it's not pretty around here right now. But I sat down, immediately and read the photo book while eating the ginger snaps!
I'm going to EfM tonight, which keeps me looking forward to life past cancer. I'm still waiting to hear from the surgeon. And, when I do, once that date is set, somehow, someway, there's going to be a trip to the ocean. It's pull is irresistable.
Thank you A. :)
Sunday, January 06, 2008
Randy, the hat is wonderfully soft and I know I'll enjoy wearing it. Thank you for your many cards, kind thoughts, and I know prayers.
Mary Anne just gave me her complete cache of hats as she has graduated to HAIR and so I now have a huge supply of head coverings. I'm hoping that now I'm done getting chemo, that I'll soon be moving into the wonderful world of hair again. I'll get the hair back, but lose the boobs. If it's not one thing it's three more, eh?
I had the most fabulous blueberry waffle for breakfast this morning. It's nice to be invited into the cozy inside of morning family time and have love around me. It makes me feel happy.
I am very rich in loved ones and people who care about me, and no matter what I lose, I have learned how rich I am in other ways. Thanks to all who are out there and sending me thoughts, prayers, light, energy, and good will. It's all appreciated and accepted with loving gratefulness.
Each day I'll get a little smarter and a little more used to the evolution about to occur. My butt may be down now, but I've got places to go and things to do. I need to see the sea soon. I don't know how yet, or when, but it's important and I'm going to find a way to go. Goals can be little, like getting groceries for Betty. But my next big goal is to figure out how to get my butt to the ocean. It'll come. It'll come.
Saturday, January 05, 2008
There are some good reasons to do things in this order, and I understand that. The surgery is going to come first. They would offer to let me have the surgery in Houston, but I don't want to do that. I'm not flying back to home on an airplane with drains in me and stuff like that. I have a good, good relationship with my surgeon in Atlanta, so I'm going to do it here and recover with Jenn's help.
At the time of the surgery, pathology tissue will be collected and sent to MDA for their examination and culturing. That way they have the tissue to any special tests they want to do. I'm happy about that because of my botched biopsy early on, and because they'll be doing more extensive testing than what's done here.
Once I have my drains out, I can go to MDA. There is no rush on their part, but there is on this end, because Jenn will be going back to work. So we will work things as best as we can.
MDA does treatment. So I am going out there for treatment. I'll be evaluated by the medical oncologist to determine what treatment(s), if any, are available to me, and I will be treated there.
I've called my surgeon and left a message for them to get with me so we can get the surgery over with. There is something not right about just having a major portion of my body taken away. I've been with those boobs for 56 years, and they're just going to be cut away and sent to some lab and chunked up and the "waste" I suppose is incinerated or whatever. But that's ME they're doing that with. I feel like I need a way to say "goodbye" to this part of me and I'm not sure yet what that is because it feels very heavy and emotional, and I don't deal well with that side of life. I'd feel the same way if it was a leg or arm or whatever. But there is something more personal about this tissue that has sat on my chest for 56 years close to my heart. It is like part of my emotional self is being cut away, and that feels very, very sad.
So while I realize what I am doing is the right thing, I'm also struggling a little right now. I KNOW I'm doing the right thing. I KNOW it. But that doesn't make it an easy thing to face in the near term.
Just say a prayer for me, and the docs, and I'll get my brain wrapped around it and I'll move on. THIS is just a speedbump in the road of life.
Friday, January 04, 2008
Thursday, January 03, 2008
Today I got my Nulasta (probably my last one), and did some pottery. My onc gave me the names of some folks at MDA to consider asking for. That could be a help.
Home now resting. Tomorrow is Gentle Yoga!! Yeah. I won't be in with the gung ho, super advanced women. They've always been nice to me, but I'm the super naieve person of all time to yoga -- definitely outclassed!
God bless the makers of Zofran. That stuff is the bomb for anti-nausea. Worth every bit of the $22 for each pill.
Wednesday, January 02, 2008
I've already e-mailed MD Anderson and expect to hear from them by Monday. Once they give me travel dates, I'll share the information. There is a small possibility that we may not have to elbow our way through Hartsfield, since we live close to an airport that hangers corporate jets. The possibility is there that we MIGHT be able to get an AngelFlight to Houston (and maybe back). I would be very interested in letting my butt fly to Houston on someone's rich Corinthian leather, although the chances for three seats might make this even less likely. Who knows. We'll see what happens.
I anticipate feeling pretty crumby for a while. Since chemo #4, I've pretty much been sickies the whole three weeks in-between treatments, so even though I'm done, the side-effects will linger with me for at least three weeks is my guess.
I asked the PA for the oncologist today how long it would take my body to recover and feel back to my normal self? He said for some people it's as early as three months but the vast majority of people report 6 to 12 months as the time it takes to get back to the place they were before treatment (presuming no heart damage, etc.). That's pretty congruent with what other patients tell me.
I'm so appreciative for everything my oncologist has done with the chemotherapy. He really stepped out on a limb and did a very aggressive chemo beyond what the protocols indicate, but which were exactly what I wanted to do (stamp out this sucker!). The staff there are all so helpful and nice. I'm just so thankful that I could get such excellent treatment so close to home! I've been fortunate enough that I could drive myself to treatments because it was close. I love that I can e-mail my onc questions --- I just think that is AWESOME. And after reading and talking to other cancer patients, I know to be grateful for who has done my treatments and how generous they have been with their time and efforts. I have been very blessed.
I posted a picture of me with hair on my first day of chemo, so I'm posting pictures of my "graduation" day from chemo. Look how much hair my friend Marianne already has!!!! I hope by next month I can sport such a fancy do!
Tuesday, January 01, 2008
Then hours later, you'd go back out into the wind and often the snow and collect and fold all the wash. My brother was an infant at the time, and so we were deluged with diapers. There were no Pampers or Huggies at the time. You took the Birdseye diapers, washed them dried them and then there were a hundred variations of folding depending on the size of your infant or toddler. Taking in all the diapers and sheets and undies and shirts and pants and dresses took time, and once again your hands felt frozen and were painful by the time you'd only taken down a line or two of wash. The wash itself was frozen from the water left in it. Nothing dried. Why did I have to bother hanging it out and taking it in? It just became a solid frozen sheet that was nearly impossible to fold. Everything would be brought back inside and for the first 20 minutes it stayed flat and frozen. During those 20 minutes I'd take the sheets and diapers and dresses and pants and everything else large enough, and hang them over doors so that they'd actually dry inside the house. Sometimes the sheets would take two days of turing them and re-folding them with different layers exposed to the outside. If you weren't careful to keep turning them and refolding them, they soured, and you sure didn't want to go through that whole process again, so one had to be vigilant.
I remember a clothesline that looks just like the one in the picture, and the snow piled up just as high as I put on my winter, fur-lined galoshes and heavy jacket with an Eskemo hood, and would go outside to put out and take in the laundry. You know, I really like my washer and dryer. And even though I'm now in Georgia instead of New York, I'll never forget how tiring and cold, and difficult it was to wrestle with the laundry in the winter. Some people look back and think of those days as the "Good 'Ol Days," but I'm not volunteering to go back there.