TERRI’S SISTERHOOD OF THE SOON TO BE TRAVELING TA TA’S and YA YA'S UPDATE
June Archive
6/29/09:
In a few days I'll be in Nadir (roughly 7 to 14 days after chemo infusion). This is when my blood counts take a dive and I'm highly susceptible to infection. With any luck and by being careful, I'll be fine. Basically it means, I have to stay away from crowds, children or anyone who is sick. I can wear a face mask, but that's not foolproof. I have to check my temp at least once a day, more if I develop a temp, and call my oncologist if it reaches 100.5. Then they give me an antibiotic by phone (to keep me from getting more contaminated or contaminating others at the hospital). If that doesn't work to bring the fever down, I've bought myself a first class ticket for a hospital stay at Moffitt until they get the infection under control. I also can't take Tylenol for headaches, etc in case it masks a fever. Bill has to prepare all my meals. I can't handle raw fruits, veggies, or meats. All of these have to be cooked well. I have to be very careful and not get cuts, burns, or scratches, etc and if I do, they have to be cleaned well and bandaged against infection. I have a list as long as my arm as to do's and don't during Nadir. But with any luck, knowledge is power and knowing my limitations will keep me from getting sick.
And now on the brighter side! A few more hats and that's it. I have tons of hats so I just picked out some of them to model. I've got baseball, bucket, floppy-you name it LOL! I also ordered a bucket hat that has cool beads in it. You wet it in water and it keeps your head cool. It should be great by the pool if I ever get the okay to swim in it again LOL! I've crocheted a few for myself in cool cotton for Florida. So far, I walk around the house billiard ball style. It's cooler. Except for the pictures below, haven't worn the wig. Haven't gone anywhere!
A home made hat. Now that I'm not typing now, I can crochet a little (typing and crocheting at the same time reves up carpal tunnel in me these days)
6/27/09:
Not much different than yesterday. One of my worse fears was losing my hair in clumps before I had the chance or desire to get it shaved off. I wouldn't mind the shaving than the gross combing and getting clumps out that way, or a big wedge of my hair in my hands. They said like clockwork, it falls out in two weeks. Couldn't even handle the thought of that. If it was coming out, it was going on my terms, all at once! With that said, Bill drove me over to Ann's at Pandora's Box (my usual haunt). She does much better work that this LOL! We laughed, we joked, we had a great time! Thanks to the entire staff and customers for making this fun!
now some pics of the cut and at home with my wig shots. Some of my more quirkier pics to come. Stay tuned for more of my hat collection in the following days!
6/26/09:
Just a quick note-no nausea yet, but the chemo brain has arrived. It's hard to explain, but I'll give it a go. There is a fuzziness between what I want my hands to do and letting them do it. There is a weird blurry vision, somewhat akin to putting on stronger bifocals than what you need and you feel that muscle pulling in your eyes and it's blurry. I was hoping it corrected my vision, but alas, if I take my glasses off, it's no better. I also have a sore throat and tingly lips. The throat feels like I was screaming at the top of my lungs for two days. It feels dry and hoarsy. Chemo does dry up your passages and I have to rinse with baking soda after I eat. My foods are very limited. NO fried or greasy foods, no restaurants/fast food (someone at home should prepare your meals), all meat well done, basically, all soft, room temp foods is best and then you adjust your food list according to the symptoms you get. Such as constipation, eat more fiber foods. Diarrhea, eat rice. At certain times during the cycle, no raw veggies (not even handling them)/salads. If the food is cold, let it warm up, hot, it has to cool down. Lots and lots of water to flush the drugs from your system.
Now, the fun stuff you never wanted to know LOL! Consider yourself warned LOL! I'm given, along with a few other chemo drugs, something called 5FH 100. It's vials of stuff that they pump into you that is cherry red fluid. When I pee, it's mango red/orange. Pretty color, but not what you want to see in a toilet LOL! For the first 48-72 hours, I have to close the lid on the toilet, flush twice (I do three times), wipe the entire toilet, top to bottom with Clorox wipes. Clean the toilet bowl thoroughly with a brush at least once. This is to keep Bill or anyone else coming into contact with my urine and chemo byproducts and being treated along with me. It isn't bad enough that I'm sick with chemo, now I have to do my least favorite cleaning chore every few hours! If any of my fluids come in contact with clothes, they must be washed in the machine, twice, preferably with bleach or bleach alternative (chemo brain strikes. Had beach instead of bleach-Bill caught it for me LOL). I'm using Oxiclean (it has bleach). Another chore I hate, washing clothes! If (and I hope this is a no reason to know) vomiting occurs, the entire area has to be scrubbed down. Luckily, I bought vomit bags. Yes, the do make them. It's from a place www.sicksaver.com. They were originally developed for a kid who got car sick. It's amazing what you can find on the internet! Well, we have these bags in handy locations throughout the house just in case!
Okay, my eyes hurt...just to let you know, so far it's tolerable. I'll be reading e-mails when I'm up to it, but probably won't be responding to a lot, at least until this eye/head thing goes away.
Again, thanks for all your warm wishes! I couldn't get through this without everyone's notes and supports. This webpage was the best get well gift Bill could give me!!! FYI-he's working from home with me today so he can be nearby.
6/25/09:
I've gotten my first dose of chemo today! And here I thought they wouldn't do it just yet. Right now I'm feeling okay. Just a little lightheaded from time to time. That could be the other meds to keep me from getting sick to my stomach. I'm not going to type much, but just to let everyone know where I am and how I'm doing (so far).
FYI-The miniature pincher I found on the side of the road yesterday was adopted today (Thanks Tom-hope your family and you enjoy your new addition!). Thank you for all who showed interest and helping me find this lovable dog a home! I think her new name is Bolt (just like the movie).
I'll never be able to forget this day with Farrah Fawcett and Michael Jackson dying today too! Yikes!
Also, a quick note to Connie! Thank you so much for the crystals! I wore one today (the heart) to my first chemo session and thought of you several times throughout the day! I'll be sending a letter, just give me some time.
If you don't hear from me for a few days (or longer?) I'm hear, just not up to typing. I (or Bill) will keep you posted!
Thanks for all the good thoughts and wishes! It's such a help knowing how many people are in my corner and care about my welfare! Hugs and kisses to everyone!
6/20/09:
Not much new to report. I do have a positional pain on my right side of my belly button. I guess it's a muscle that hasn't worked in the month I've been healing. I've been bending down and reaching things more so I guess it's from that. Bill's back is bothering him so we're taking it easy this weekend. Hopefully, his back is okay for next weekend, especially after sitting through my chemo and doctor's appointments on Thursday. His back is also, basically, my back and I guess it's thinking of mutinying!
Joke of the day! I guess this is the reason I don't care to replace them LOL!
One saggy boob said to the other
saggy boob:
'If we don't get some support soon, people will think we're nuts"!
6/16/09:
I know, everyone is wondering where I've been! It's just that there isn't much news to report. Hanging out waiting for the wound to heal, my chemo to start and still waiting patiently to be able to get into the pool.
The only difference is Bill's back is acting up. Probably from being my back too and also bending over me to change my bandages. He's such a trooper though! I would definitely be whining at this point if the shoe was on the other foot!
I thought everyone would like to see me with my happy face the morning that Spongebob was being removed!
6/11/09:
My first chemo treatment will be Thursday, June 25. My first three infusions (3 weeks apart) will be FEC, which is a combination of three chemo drugs, 5 FU 100, flouracil and Cytoxan, all of which has there own special side effects. The last three infusions will be Taxotere (another set of special side effects)-which if all goes according to plan, should start on Week 13 (for a total of 18 weeks). So I got my chemo dates. Now all I can think of is after all this time asking "when can I start the chemo and get that over with" I now have my dates and "Be careful what you ask for" LOL! Out of the frying pan, into the fire!
6/10/09:
Good news/Bad news! The good news is that Spongebob is going back to where he belongs! The bad news is that I was told I can't start chemo for another two weeks while this finishes healing/closing. Right now I have a wet to dry dressing in it. That means it is sterile saline gauze pads inserted into the wound, then abdominal pads are taped over it since it will draw out the saline/wound drainage. It's better than the wound vac in the fact that I don't have to carry the box with me. Instead of feeling a pinching/pulling sensation 24/7, it now feels sort of scratchy with a slight burning sensation (from the saline and gauze pads). It's not too bad though. I'm just glad I get to ship Spongebob back to his home tomorrow!
I'll see the oncologist tomorrow and make sure she concurs with the surgeon's recommendations and see when I'll be scheduled for chemo. I hope they schedule me in two weeks and she can check it before she gives me the chemo, rather than she checks it in two weeks and then schedules me for chemo at another time. I'll know more tomorrow.
6/8/09:
I got a little sick this weekend. I
think it's because I went out by myself to a few stores on Friday and tried to
do too much in the high heat (95 degrees and humid). It might have been
allergy related. Who knows?! Feeling much better now that I got this
e-mailed to me today! Thanks Michelle (AKA Ralf)! Trixie, you and
your friends are just what the doctor ordered. This picture was taken at
the Washington, D.C. Susan G. Komen Race for the Cure this past weekend.
I also would like to mention that Marlene Herrera-Kotinsky will be doing the
same walk in my name this October in
http://www.the3day.org/site/TR/Walk/TampaBayEvent?px=3245754&pg=personal&fr_id=1301
MUCH LOVE AND APPRECIATION TO MICHELLE, TRIXIE (you go girl!), MARY, JACI, MAUREEN AND SARAH!
6/4/09:
I'm doing better. The last couple of nights I've tried melatonin and so far, it seems to be doing the trick with sleeping. Even without the Xanax! It's amazing what a good nights sleep can do for you!
And if I may indulge, a message to Bill (and anyone else who cares to read it).
Dear Bill:
Do I tell you enough? Cause I do, more than words can say!
How to Dance in the Rain
It
was a busy morning, about 8:30, when an elderly gentleman in his 80's arrived
to have stitches removed from his thumb. He said he was in a hurry as he had an
appointment at 9:00 am. I took his vital signs and had him take a seat,
knowing it would be over an hour before someone would to able to see him. I saw
him looking at his watch and decided, since I was not busy with another
patient, I would evaluate his wound. On exam, it was well healed, so I talked
to one of the doctors, got the needed supplies to remove his sutures and
redress his wound.
While taking care of his wound, I asked him if he had another doctor's
appointment this morning, as he was in such a hurry. The gentleman told
me no, that he needed to go to the nursing home to eat breakfast with his wife.
I inquired as to her health.He told me that she had been there for a while and
that she was a victim of Alzheimer's Disease.
As we talked, I asked if she would be upset if he was a bit late. He
replied that she no longer knew who he was, that she had not recognized him in
five years now.
I was surprised, and asked him, 'And you still go every morning, even though
she doesn't know who you are?' He smiled as he patted my hand and said
'She doesn't know me, but I still know who she is.'
I had to hold back tears as he left, I had goose bumps on my arms, and
thought, 'That is the kind of love I want in my life.' True love is
neither physical, nor romantic. True love is an acceptance of all that
is, has been, will be, and will not be.
The happiest people don't necessarily have the best of everything; they just
make the best of everything they have.
'Life isn't about how to survive the storm, but how to dance in the
rain.'
6/3/09:
Still here! I've started to occasionally get pain on my stomach because the suction cup on the wound vac is digging into the wound now. The sides have come closer together, but not enough to keep the cup out of the wound once the suction is turned on and it rubs on the new tissue that is forming. I know, it's hard to explain. My visiting nurse did something different with it to move the cup, but it's still cranky and my stomach is still sore. Otherwise, it's coming along and so am I. Helen (my nurse) says I'm a fast healer. I feel like it's taking forever! I know, be a patient patient ;-)