TERRI’S SISTERHOOD OF THE SOON TO BE TRAVELING TA TA’S and YA YA'S UPDATE
May Archive
5/31/09:
Well, I've finally mastered how far I can go attached to my "leash". I have tubing between Spongebob and me that I can wind it up and carry the box with me, which I do for much of the day. This morning I had the tubing extended (it has to be to allow for movement overnight in bed). After breakfast Bill almost freaked out when I started to put stuff away without taking my box. He was just starting to say something about I'm going somewhere without Spongebob when he realized my tubing was footloose and fancy free. I told him not to worry, I know how far I can go on my leash. For instance, I can set it on a doorknob in the master bath and reach my sink on the other side of the room, but cannot reach the closet unless I take the beast. It's the little things in life that you learn to appreciate LOL!
Yesterday I tried to sit outside in the sun while Bill was in the pool. Since Spongebob is a rental (and very expensive at that) I can't afford to damage him. I can wet my feet on the top step of the pool but the next step with him is a no-no because of the tubing (even wound up), his box on my shoulder, etc can get wet at that point. It sucks (literally and figuratively). I can't even sit with my legs in the pool because it's too close to the edge and water invariably laps over the side from time to time. I sat on the lounge chair for a bit. It takes a lot to get everything just so, and I can't lay on my stomach and it's difficult to manage laying on my side (even after extending the leash) so it's just sunny side up only. It gets old quick. I lasted about 20 minutes on the lounge chair and another 10 under the shade (laying back on one chair with my feet on another). Then I came inside and played on the computer. At least Bill stayed out by the pool for a bit. I could tell he was bored out there by himself, but I didn't want him coming inside because I couldn't swim. It would only make me feel worse.
I originally planned on being able to go into the pool on June 7. The surgeon said no swimming for six weeks (and yes, I counted it out and marked it on my calendar!). Needless to say, with the open wound, that is postponed (I'm beginning to see a pattern here LOL!).
Oh, and for anyone who knew of my sleep problems...it's baaaaccckkkk LOL! I slept well on Percocet (who doesn't ;-) but I'm officially having trouble again now that I've been off the "hard stuff". I tried going back on my Xanax, but I think my body has either adjusted to that dose or my anxiety has increased (most likely both!). Tonight I'll try some of Bill's melatonin. I've already given lots of other things a try. Benedryl worked best, but dries out my nasal passages something fierce. With my history of nosebleeds from dryness, I can't afford having issues with nasal packing etc. If anyone has any suggestions, please drop me an e-mail and let me know. FYI-it's not due to obstructive sleep apnea. I've been tested and all that was found was that I do have a condition where I'm not a deep REM sleeper and I tend to wake myself up a lot. My problem mostly stems from my inability to relax my mind. I keep thinking too much. It's not even always about cancer-I had this problem way before the cancer. It's stupid stuff like what to make for dinner, should I try a different format with my scrapbooking, did I change the fish bowl water, etc. Really stupid stuff. Cancer thoughts creep in from time to time (i.e. what's happening now that I haven't been able to start chemo yet, how will I feel with chemo, what should I stock the pantry with as far as foods during chemo) but it surprisingly, so far, it isn't that much. I think the Xanax works well for that aspect. Has anyone tried biofeedback? Any other suggestions (besides knocking myself out with a hammer)? I'd appreciate any suggestions that anyone has!
5/27/09:
Spongebob and I are still one. The GYN surgeon wants the wound vac on another two weeks. I see the GYN surgeon again on June 10. Geez the wound vac better come out by then. They plan on either stitches or a wet to dry dressing (don't ask, I don't know the difference or how this impacts chemo). I also called the oncologist. I see her on June 11, the following day after the wound vac is taken out. It's unlikely my chemo will start then, but she will evaluate the wound and decide when I can start chemo. I have another call into her because I would like to clarify a few things (I'm assuming chemo can't start the next day, but her nurse did say something that it could begin)
After more discussion, they would like me to stay out of work at least, until the first chemo dose and recovery. For one thing, reclining or laying down reduces the strain on my wound and will bring the sides closer together (as opposed to sitting upright and typing-which spreads the wound further apart and irritates it). Standing/walking is okay. Just sitting upright isn't the best approach. The reason for not returning before the first chemo is because they expect that the first chemo will by my worse. It's a combination of a loading dose and/or not being to regulate the anti-nausea drugs before this dose (they will give me what normally works for most patients, but everyone is different). Not to mention, I won't be able to judge how hard it hits me until I experience it at least once.
Needless to say, I'm a little bummed, but hanging in there.
Meanwhile a shot out to Nancy and Karen (they know why) LOL! Get well soon to both of you!
5/22/09:
Hanging in there and getting around a little better. The nurse should be here soon though LOL! The good news is I go a whole two days before she comes again on Monday (I wonder if that's an issue since Monday is Memorial Day-I'll have to remember to ask her).
Well, I got my Moffitt schedule in the mail today and it looks like my first chemo session is Thursday, June 11, providing the surgeon releases me from his care. So I finally got my chemo date after asking all the time when can I start and now that I have a date, I'm officially apprehensive LOL! I guess after all is said and done, let's get this started and get it over with.
We're just running a few errands this week and staying close to home. SpongeBob comes with me. He likes car trips LOL! Hopefully if the weather holds out we can B-B-Q this weekend. I could go for a nice hamburger!
HAVE A HAPPY MEMORIAL DAY WEEKEND! Talk to everyone after the holiday!
5/19/09:
Not too much is new. It seems the changing of the bandage every other day correlates to the time it takes for the wound to stop being so raw, and then it's time to peel it all off again and start anew. It's excruciating, but needs to be done. Hopefully, when I see the doctor next Wednesday, he can stitch it up by then. Meanwhile I've calculated 4 more changes of the bandages until then (Wednesday, Friday, Monday and off again for the doctor on Wednesday). I have now taken to bringing a iced washcloth into the room with me for my face to keep me from passing out. It tends to freak out the nurses if you do ;-)
I do expect to get a get well card from Michael's Craft Store. If they close abruptly, I think it's my fault. Bill took me there the other night and I could only spend $4.89. I usually can't get out of that store under $50 (and usually a lot more) I tried. Truly, I tried. Since I'm not typing I went back to crocheting (I gave it up because of the beginnings of carpal tunnel) and I am making myself some chemo hats. I got the idea of making myself a crocheted light cotton cord sweater to cover up my arms in the hospital. If I found a color I liked in the weight of the cord I liked, they didn't have enough of the dye lot to finish the item. I have wool here to do more hats, so I guess that is where I stand with crocheting. Then I went to the bead department and realized that my eyes and fingers no longer coordinate to work together to do that. I stayed out of the scrapbook area because I have so much on my plate and don't need anything from that department until I can do some of the things I have floating around here. So basically, if you like Michael's get there quick before they file Chapter 11 (and again, I'm sorry)...
I have now taking to watch Netflix on my computer if the movie is available that way. At least it will give me something to do between deliveries of the next movie in the mail.
I think the UPS man thinks I want to proposition him. He rang the bell with a package and he was already in the truck by the time I reached to door. So imagine a 49-year-old waving her arms in her nightgown and robe at 4 pm. I think he thought he should just gun the engine, but thankfully for me, he came back to the door. You see, I can't lift anything over 10 lbs and I needed him to bring in the box;-) Really, nothing more than that!
The other day Bill told me I was "fresh and tasty" because I'm vacuum packed with my wound vac. Isn't that romantic! Brings Seal-a-meal to a whole new definition. OHHH good news speaking of food, I'm back to eating hamburger meat again (see 5/14 note)! Bill made hamburgers last night and they were so good I couldn't care less that my wound looks like hamburger! I missed beef!
5/16/09:
The vacuum is okay. I've even gotten used to carrying the box with me everywhere attached to a cord and plugging in to recharge the battery at night. I still feel better going out with this than with the wound packing. It pinches somewhat all the time (some times more than others) and it isn't a matter of position or anything so you can't adjust how your sitting, etc. Changing the dressing leaves a little to be desired. The nurse did come to change it today and said that the nurse who cut the sponge the other day made it to fit the entire wound and that wasn't the proper way to do it. It should be smaller than the wound and it hurt like you wouldn't believe when she had to take the old dressing out. Turns out with it is cut big, the skin starts to graft to the sponge (around the border). Good thing Bill was home cause I squeezed his fingers off! Through all this I never needed to hold his hand for any procedure! I saw stars (this was on a whole 7mg Percocet) and it took forever to wheedle that skin off the sponge. Once it was out I was fine. They are ordering me a moisturizing sponge packing so it doesn't stick so much. Unfortunately, I won't have it in time for Monday's changing (or Monday or Wednesday's changing). After the change today it really took it out of me. Had a long nap afterwards (I was hoping to go for a ride into town to Michaels or something and then get lunch-that didn't happen).
5/14/09:
Okay, so my wound vac has arrived. Frankly, it sucks LOL! Alright, it's not that bad. I'm just hooked up to a machine that is attached to a tube attached to the wound. It pinches a bit when it's sucking fluid out, but overall, I guess it's not too bad. I'd do anything at this point to close this open wound. Another reason for dresses though. I'm sure it would be workable, but I think it would be easier to worm the tube either between buttons on a dress or just below the hem than trying to get it between a shirt and pants. The application wasn't too bad. At least it wasn't what I envisioned (something like inserting aquarium hosing into the wound and letting it do it's thing). They put a barrier film around your wound (leaving the wound part open), put a cut-to-fit sponge over that, and put another barrier over that-like a sandwich sponge. Then they cut a hole in the upper barrier and put a suction type thing with the hose connected and turn the machine on. Like I said, you feel it pinching when it works. I'm back to liking my Percocet. I'm on a 1/2 tab of Percocet and it takes the sting out of it. As soon as it wears off, you feel it again. Even though I'm carrying around the box, I feel a little less bloated so I guess it's sucking some fluid out. We're not talking a lot. Maybe a few teaspoons every hour, but it's a start. This will continue for two weeks. For those who know I have a propensity to name things, my wound is the Hamburgler (looks like hamburger meat) and my machine is Spongebob Sucks-a-lot.
Other than that, today I've bided my time shopping on the internet. Believe it or not, (and I'm not making this up-Bill!) my shoes are too big LOL! I thought my feet swelled a little bit down here because of the heat, my high blood pressure, and okay, maybe my salt intake. I guess it wasn't much of those things. I guess the cysts caused a certain amount of fluid backup by pressing on vessels, etc. and didn't let my tissues drain like they should. Now that things are flowing right, my puffy feet have disappeared. I didn't really think they were that bad until you see them un-puffed. Really, I need new sandals. My feet wiggle too much from side to side in my old ones from being stretched out. Besides, they will match my new dresses LOL!
Since I didn't get lunch out yesterday (no, I don't count a salad at the hospital cafeteria) with the doctors visit and it taking longer than we thought, we might go out for dinner tonight (a small local restaurant) and if all goes well, I'll take a ride with Bill to Publix for some groceries. I'll ride the scooter that they have there, senior citizen style. I hope I don't mow anyone down! I'm going to nap in prep for dinner out. I'm working on getting down to one nap a day. I thought I was there and yo and behold, I needed two naps yesterday!
5/13/09:
Went to the GYN surgeon today. The wound has healed a little bit, but not as fast as they would like. I have a lot of fluid still and it's a slow process for it to drain by itself. So they are ordering me a wound vac. Yep, it is exactly what it sounds like-a wound vacuum cleaner. One of the visiting nurses described this for me and I thought it would be something I was hooked up for for oh, say, 20 minutes a day or so?! Not the case. I'm hooked up to it and have to carry around the "transistor radio" portion on the outside 24/7. It's okay with me though. It's supposed to speed the healing process by almost double and the surgeon thinks when I return in two weeks it will be small enough to suture (if needed). This should be delivered tomorrow and with any luck, one of the visiting nurses will be by tomorrow to plug me in.
Since I had the chemo port installed a while ago I asked them since it hasn't been accessed since the installation, is there anything that has to be done with it. Of course there is LOL! Good thing I asked because if it isn't accessed in 1 month it needs to be flushed with saline. We had to wait a few hours for my appointment to get it flushed. It's not a big procedure, just a trip to the lab and you need an appt for that at Moffitt. Glad to be home. Big trip for one day and I'm beat. Nap-time!
5/12/09:
Not too much to report. I don't know the exact measurements because of the freak-out factor, but my wound, for whatever reason, has gotten a little longer, but has reduced in width and length. I see the doctor tomorrow. I talked to the visiting nurse today and she doesn't think he's going to close it just yet. She's thinking he may do a loop stitch to hold the sides together a little bit more and they pack the wound under the loop.
The fever was still up yesterday so I called the doctor and he put me on an antibiotic. The good news is no fever today (so far). If it happens, it usually starts to climb at 3 pm and it's 6 pm now, so I'm hoping I'm past all that.
All in all, I'm doing well. Tired. Tired of watching TV. Tired of surfing the web. Of reading. Can't sit to do scrapbooking. Even getting tired of napping but if I don't I don't make it thru the day! If I fall asleep later than 4 pm it interrupts my bedtime schedule.
For my highlight today I ordered a few casual
dresses on-line. Yes, even this comes with a story LOL! I can't
wear regular pants with the abdominal packing and dressings. I can't even
do elastic waist ones yet. Since leaving
I'll check in tomorrow and let you know what's up next. No chemo until the stomach wound is completely healed. I'll also see the oncologist shortly before that to get on the same page.
5/10/09:
HAPPY MOTHERS DAY!!!!
5/9/09:
Nothing ever goes smoothly LOL! Last night I was running a temperature and was in more pain than I had been. Bill had to call the resident on duty because they never really said what to do if you ran a temp. I've been on Tylenol round the clock for days so I couldn't take more. I wasn't due for another dose for 4 hours. The resident mentioned that the dressing should be changed twice a day (the nurse practitioner only ordered it once a day) and the insurance will only pay for the nurses to change it once a day. Unfortunately (fortunately for me!) I can't see the wound good enough to change the dressings (even if I could bring myself to look at it). That means they will show Bill how to do it and he'll have to do it once a day. I'm surprised the man is still here! Hopefully it's not as bad as we anticipate. It's okay for the nurses to do it, they have no emotional connection. When it's someone you love, you don't want to hurt them so every time I wince or say ouch Bill will stress out. It's not the actual changing of the bandages and taking out the packing, he's just afraid of hurting me that bother's him more. I feel so bad for the guy! He's been such a trouper thru all of this including the fever issues last night, calling the doctor, soaking the dressing in saline at 4 am this morning and hearing me bellyache about the pain. It turns out with only one changing of the dressing, the dressing was dry and caused rubbing of the inside of the wound (you could actually feel the gauze rubbing-ouch!!). Once it was wet and I took more Percocet I was better. The fever broke this am and I'm tired, but not in as much pain as I was.
HAPPY MOTHER'S DAY to all mothers out there! Enjoy your day tomorrow!
5/8/09:
A little bit slower and back to being a
little sore from the open wound, but otherwise doing well. The
visiting nurse was in to change the wound dressing yesterday. Still
freaks me out LOL! She said "it should look like hamburger
meat". There is a vision I didn't need LOL! I won't be
looking at it at all! Waiting for the nurse to show for my 1 pm dressing
change. The nurse who did the assessment yesterday did ask if they showed
us how, would we be comfortable changing the dressing ourselves. HA HA HA
HA HA! LMAO!
Well, that's enough for me today. For all you mothers out there, have a happy Mother's Day! FYI-we won't be celebrating that but we will be celebrating our 28th wedding anniversary! We were married on Sunday, Mother's Day, 1981! Seems like it was just yesterday with the exception of the extra weight, wrinkles, scars and now an extra hole LOL! We love each other more every day! Bill must love me more-who else would come home to hamburger meat!
5/6/09:
Finally some good news! My ovaries were benign. So were my uterus and cervix. The ovaries were cystadenofibromas (benign tumors consisting of gland and fibrous tissue). My uterus was had a leiomyoma (fibroid) and adenomyosis (endometriosis-I was never diagnosed with it-go figure). My cervix didn't want to be left out so it developed a nabothian cyst (mucous gland). Last but not least, my fallopian tubes had hydrosalpinx (filled with fluid). Cytology was negative for any cancer cells (just intra-inflammatory cells (will all that going on, it had every right to be inflamed)! Bottom line-I'm good below the belt!
My staples were taken out-which is the good
news. Bad news is fluid filled up behind a few stitches and kept the
would from closing just above the pubic area. This kept the wound from
healing properly. There is no infection there and this is the probable
cause of my temperature (low-grade). I don't have to worrry about the
temp unless it goes beyond 100ºF. I now have a hole in my stomach (you
think this freaks you out, how do you think I feel LOL!). A visiting
nurse will come every day and change my dressing. They pack the hole with
a saline dressing (yes, this hurts and I'll be taking out 1/2 a Percocet an
hour before the nurse comes!), then they will cover it back up. Next
Wednesday I go back and they suture the rest of it closed (Jeez!) and allow
that to heal too. I didn't ask but I'm sure this keeps me out of the pool
longer-I'll ask next time but didn't want to hear the answer today. Right
now I am going with what they told me when I got out of the hospital-showers
only. No baths or pool for six weeks (June 8 by my calculations)!
Between surgeries for two ectopic pregnancies, 1 breast biopsy, one port
insertion, and the hysterectomy-I have a map of the
5/5/09:
Okay, the girl has too much time on her hands and I've been on the computer too long! Many of you are going to think I have been hitting the Percocet too hard but I swear, I haven't had any for days. I am considering instead of reconstruction, a scar tattoo. I heard "what?" coming from the four ends of the earth LOL! Bill thinks I'm nuts (he only saw the lizard tattoo so he has nothing to compare it to-little does he know I might just do a full sized flamingo on my entire body just to torment the man. He's not a flamingo fan LOL).
Check out this website (FYI-if you're
squeamish about seeing scars, don't go to the site LOL). Come on though,
the flower ones are pretty! The following artist is actually based in
http://www.dragonflyink.com/tattoo_scar.html
There is this one that I found on another website, but even for me it's a bit much...
THOUGHT FOR THE DAY:
THE BUZZARD:
If you put a buzzard in a pen that is 6 feet by 8 feet and is entirely
open at the top, the bird, in spite of its ability to fly, will be an
absolute prisoner. The reason is that a buzzard always begins a flight
from the ground with a run of 10 to 12 feet. Without space to run, as is
its habit, it will not even attempt to fly, but will remain a prisoner for
life in a small jail with no top.
THE BAT:
The ordinary bat that flies around at night, a remarkable nimble creature
in the air, cannot take off from a level place. If it is placed on the
floor or flat ground, all it can do is shuffle about helplessly and, no
doubt, painfully, until it reaches some slight elevation from which it can
throw itself into the air. Then, at once, it takes off like a flash.
THE BUMBLEBEE:
A bumblebee, if dropped into an open tumbler, will be there until it dies,
unless it is taken out. It never sees the means of escape at the top, but
persists in trying to find some way out through the sides near the bottom.
It will seek a way where none exists, until it completely destroys itself.
PEOPLE:
In many ways, we are like the buzzard, the bat, and the bumblebee. We
struggle about with all our problems and frustrations, never realizing
that all we have to do is look up! That's the answer, the escape route and
the solution to any problem! Just look up.
Sorrow looks back, Worry looks around, But faith looks up!
5/3/09:
My niece sent this to me in a card and I thought I would share it with everyone (she had her hysterectomy years ago). FYI-she tells me she has a ditty for my titties too!
ROSES ARE RED.
VIOLETS ARE BLUE.
YOUR OVARIES ARE GONE;
AND YOU UTERUS TOO!
NO NEED FOR TAMPONS;
NO NEED FOR PADS.
EXCEPT FOR THE "CRASH MENOPAUSE"
BEING A EUNUCH IS RAD!
Meanwhile, I took a little hiatus while I gathered my wits about me. Percocet is good for pain but foggy for days going by! Not much happening here. Other than a mild fever, I'm getting better. They said to expect a fever, just for me to call if it's higher than 100.5. Mine is in the 99-100 range. The Tylenol knocks it down much of the time too. My highlight of the day is the mail LOL! Thanks for the cards and letters!
The good news is that it now takes me only
five minutes to get into and out of bed and I can do this on my own now (used
to be with Bill's help and took 20 minutes each way). Even my hobbling
thru the house has gotten faster. Today was the first day I only needed
1/2 Percocet once all day. Just a few days ago when I was released from
the hospital I was on 1 or 2 Percocet every 4 hours and couldn't wait for the
four hour period to be up! Now for the most part I'm getting by on
just Tylenol (regularly every 8 hours-it' the long acting kind). The only
problem I have with this is the coughing. Part of it is due to usual
surgery stuff (they give you that lung exerciser thingie to get rid of
phlegm). I also have my asthma to contend with. I shouldn't complain
much though, it's okay, not as bad allergy wise than it was about a month
ago. The big problem is when I cough I have to hold a pillow to my
stomach to keep most of the staples in place and to support my stomach as I
cough. This hurts-ALOT! I know it is going to hurt and you
try to stifle the cough. So it becomes this honking kinda noise.
Not quite a cough. If anyone ever saw that skit on the Carol Burnett show
with Tim
My stomach is a different shape each day! Today it's more like a 30 lb watermelon is sitting on my stomach. And the staples are starting to itch. Drives me crazy! I've always yelled ouch when I itch (a pet peeve of Bill's since "itches don't hurt"). Problem is mine do LOL! I remember a study that came out years ago saying that to some people their nerve endings tolerate an itch differently from other people and that for some people an itch hurts. Couldn't wait to show that to Bill! I still yell when I itch then Bill thinks something happened and then gets upset when I say it was only an itch. He should be ready to kill me by week 5!
Bill changes my dressing so I haven't looked at the scar yet (bless him)! Seeing staples in my body skeves me LOL (not on anyone else's body, just mine)! I don't plan on looking at it until well after the staples are out and the swelling has come down. This is just on my already scarred stomach! Should be interesting after the mastectomy! Probably won't look at those scars for years.
Tomorrow I think I'm going to see if Bill can prop up the laptop on my computer so I can surf the web, go through some pictures and respond to some of my e-mails! Still too uncomfortable to sit at the desk long. I've read some books. Skimmed through magazines. Watched enough TV in the last week to fill my dance card for years (I'm even watching dumb shows now just to have something to do). Now what?! I even bought a puzzle book even though I'm not a puzzle person. And it's still only Week 1!