TERRI’S SISTERHOOD OF THE SOON TO BE TRAVELING TA TA’S and YA YA'S UPDATE
Breast Cancer - The First Round
Hi Everyone:
I had thoughts of telling just a few family members and close friends but felt it was better for all to know so all my family and friends can go get their ta-tas examined too!
So that I don't have to remember who I spoke to about what, Bill is setting up this webpage for my family and friends. Thank you so much for offering so much support and keeping me in your thoughts. I so appreciate it! I will be adding to it as information is provided to me to update everyone about my progress. Newest entries will be on the top of the pages so you don’t have to scroll down all the time.
11/7/09:
Murphy's law! So damn typical for me! I'm doing fine and felt okay to go to the grocery store with Bill (just for company and another walk). Even went for a walk beforehand. Finished shopping and we are checking out and I feel something wet on my leg. I look down and the drain is out on the left side (that's the important one-no lymph nodes anymore on that side). I mean out. Didn't feel a thing. I did push the cart in the beginning for an isle or two and didn't lift a thing. Bill did the lifting/reaching for the groceries etc. That side was a little sore this morning, but that side has been the achy side so I didn't think anything of it. Of course, the weekends suck to contact a doctor if you have an issue. I called and waited for a resident (20+ minutes on hold), and was told she would call me back (1/2 hour later she did). Then she said the surgeon wasn't on call and she would contact her and call me back. This was around 3 pm. At 7:30 pm I heard back from the resident asking how I was doing. She will call in the morning again to check on me. Basically, as long as the arm doesn't swell, itch, etc. or develop a golf ball sized lump under my armpit I'm good. I don't know how it came out. It must have slipped out of the stitch holding it (the stitch is still there. If the left side holds it's own, I can get the right side drain out this week too. On the down side, if I do develop a lump etc, it will have to be drained. I wasn't up to asking how. I'd rather not think of it!
I'll keep you posted!
11/6/09 (I'm back!):
I'm doing okay I guess. The chest area is numb but the armpits hurt a lot. I'm getting some range of motion back in both arms, more right than left. I'm limited to what I can do with my left arm though to prevent lymphadema (go to www.lymphnet.org for info). Basically, all the lymph nodes were all taken out of left arm so anytime from now on I can develop lymphadema. Only 20% of women develop it, but I have to be careful all the rest of my life now. Once it starts, it's hard to treat and I'll always have it in some form or another, so preventing it is key. No blood pressures, IV's, blood work in that arm, no lifting it for extended periods, no carrying heavy objects (nothing over a gallon of milk), etc. The really sucky part is I can't have my acrylic nails anymore. I can't even have my cuticles cut on that hand and must take care with nail care, etc. I'll also have to wear a compression sleeve on that arm when flying on my broom LOL! Okay, even in airplanes;-) Check out the website for more info.
Like Bill said, I'm on Tylenol during the day and usually take Percocet at night. I can only lay on my back in bed, so I do a little better in the recliner to sleep. I've been working on getting my walking back in. I took short walks outside for the last few days. Today I got up to 1/2 mile and will stay at that for a while until I'm a little stronger. I'll probably get two separate 1/2 mile walks a day during the weekend. I'm a little concerned about getting any further from home when walking alone. Bill will walk with me more over the weekend so if I'm up to it I can go a little further.
I've gotten used to my drains mostly. The hardest part is figuring out what to do with them so they don't just dangle from my chest area. I have a camisole that has pockets, but don't like to use that all the time. I would rather that be pristine for when I have doctors appts. So I go with a string around my stomach or a favorite dress with pockets. The dress buttons up so I can pull the drains through to the front and put them into the pockets. As far as the scars, it will take quite a while to get used to that! I'm told it will smooth out and get much lighter (right now I have a few "pleats" to allow for the skin to shrink and move). I'm not sure when I can be fitted for my "Barbie boobs" yet. I call them that because they are smooth, no nipples and don't droop LOL! I'll find out more info when I see the doctor to get the drains removed and the info from the path report. Oh, yes, BTW-I did wear pink pasties to send my girls out in style! The doctor removed them for the procedure, but put them back on the girls once they were in the bucket to go to pathology ;-) Just for the record, a lot of women do something to the equivalent. One had henna tattoo symbols for good luck etc. Another had googley eyes taped on her (wish I thought of that LOL)!
Bill will post a picture of my stitches once he has a few minutes. It might take a few days or so. It will be a separate link so the squeamish or grossed out (it is pretty gross) would not be offended.
The only other issue I have is a cough (again or still?). I have the little breathing device to use to prevent pneumonia and I'm using my asthma inhalers all the time. It's more of a dry irritated post nasal drip cough and could be related to the pollen in the air along with a windy conditions we've been having this past week. It's not bad enough to call the doctor so I guess that's good.
I'm behind on my e-mails, I know! I'll get to them all soon. I don't want to be on the computer a lot, I would rather be a little more active at this point. Thanks for all the well wishes and good thoughts!
Terri's did well today. She's doing OK with just Tylenol during the day and the harder stuff at night. Her throat is still a little raw. Last night, she slept in the recliner because she can't use her arms that much to move around.
We took the bandages off today so that she could take a shower. We both did OK with that, but YUCK... The incision runs from arm pit to arm pit. She can't raise her arms and we don't know when she'll be comfortable sitting with the computer.
Stay tuned...
11/03/09:
Terri is home... She's doing well, not a lot of pain and so far only needs Tylenol. She may run a daily fever for a couple of weeks, but unless it spikes, no issues. She's traded in the Ta Ta's for a couple of testicles... J That would be the two drain bulbs. Or so she likes to call them. The nurses found that hysterical!!!
Don't be worried if she or I don't update the site for a few days. Still need to see how well she gets around and how comfortable she'll be with the laptop.
We both thank everyone for their thoughts and well wishes.
11/02/09: (Update)
Terri finally made it to her room around 6PM. I saw another doctor that said pretty much the same thing. If they both agree, she may be coming home Tuesday afternoon. They brought her some dinner and she ate a little. Her throat is a little sore from the tube, but otherwise she's doing OK.
11/02/09: (Bill Reporting)
Just spoke with Terri's doctor. She did well in surgery and will be in recovery for about an hour. Depending on how she feels, she may be able to eat right away. I'm sure she's starving since she hasn't had anything since 11:30 last night.
Depending on how Terri feels tomorrow, she may be released as soon as tomorrow afternoon, but only if both she and the doctor agree. They took all the nodes on the left and 1 on the right. They'll know next week about the results for those. As for the Ta Ta's themselves, they didn't see anything in either. The left showed the scar tissue from the biopsy and the right only showed the same fibrous tissue that they always knew she had.
The recovery nurse just called to say she's still pretty sleepy and they're waiting for a room to open up for her.
More updates later...
10/30/09:
See what I mean LOL! My surgery has been bumped up to 12:15 pm on Monday (might as well call it at least 1 pm)! Don't worry if you don't hear from Bill until evening. At this rate I might not be taken into surgery until 3 pm ;-)
10/28/09:
Doing well! Over the infection/fever. I do have teary eyes from the Taxotere, which are getting on my nerves, but overall, I've got more energy and just want to get this surgery over with. My surgery is planned for Monday, 11/2 at 11:30 am (which always runs later LOL). Bill will update my webpage as soon as he knows something. The surgery is expected to take 3 hours and then recovery time, so don't look for a posting from Bill until late afternoon or evening. He'll have his hands full when I get to a room, etc. I'm packing Lysol for him to spray everything down to make sure I don't get "cooties". I know it's a little anal, but better safe than sorry. I did get my flu shot, but couldn't get the H1N1 shot yet. Maybe I can get it while I'm in the hospital (if they get a supply in). I expect to be in the hospital overnight (best case) or two nights (if they do more extensive surgery on my lymph nodes).
Before I forget, please don't waste your time and energy (and a stamp!) to send anything to the hospital. Last time I was there lots of people sent me stuff but the hospital does not forward them to the house. I think it's a HIPPA problem where the mail workers do not have access to my address. They were returned to the senders (in some cases, a few weeks later). If you feel you want to send something, please just send it to the house (437 Down Pine Drive, Seffner, Fl 33584). Thanks!
10/22/09:
Still have no voice! Terri without a voice is like an ocean without waves (or fish, or seaweed, or seashells, or salt, etc). I think you get my drift LOL! I called the doctor's office and am waiting for a call back. I think I might have a sinus infection and am not sure if I took enough antibiotic to cure it. I finished the antibiotic yesterday but still have symptoms. My surgery is a week from Monday and I don't want it cancelled over something as relatively simple as this. Good news is no fevers since the issues last week.
10/18/09:
Just a quick note to let everyone know I'm doing okay. No fevers. Only problem is if I talk above a whisper I cough. I get that catch in my throat that you can't control and I'm hacking for 20 minutes. Bill is enjoying the quiet LOL! I still have a "honey do" list-I just point to it and do pantomime LOL!
Thanks for all the well-wishes!
10/16/09:
I just talked to the nurse. My fever broke and we're taking a wait and see approach. No hospital at this point, which is a good thing. They are full of germs! No more Tylenol and see if the fever comes back. I'm on an antibiotic. Right now I feel okay, just tired. I'll let you know if anything changes.
10/15/09(Bill Reporting):
Terri woke up with a high fever this morning. We called her Vicki, Dr. Minton's nurse. Based on her lack of other symptoms beyond fever and chills, antibiotics were ordered. The fever dropped to normal shortly after Tylenol, but she's still feeling very wiped out.
We need to call Vicki again in the morning. If the fever persists or returns, Terri may have to be hospitalized. We're hoping that the Tylenol and antibiotic will do the trick.
Stay tuned...
10/9/09:
Just a quick general note. I was at Moffitt longer than usual yesterday. Of course they had to torture me since it was my last infusion. The doctor was running late, which put everything behind. Started chemo later and the nurse started it at a lower dose. This helped a lot with the redness and flushing sensation, but we didn't get out of there until after 5.
Meanwhile to add insult to injury, no sushi until after radiation. I thought I could sneak in a meal or two between the end of nadir of this chemo and surgery, but I'm not allowed because of my immunity. That means no sushi until, at best Christmas or the first of the New Year!.
I also might be eligible for a clinical trial. I won't go into it much here, lets see if I get approved first. Chances are good.
Not sore yet. That usually hasn't kicked in until the Saturday after chemo with Taxotere. I need to get so much done between today and tomorrow. I'll be reading e-mails, but my not be able to answer right away.
10/7/09:
Tomorrow is my last chemo!!!! How great is that?!! Good thing because today was the first day I felt a little better since the last chemo. Usually I have a few days between my last chemo (it used to be almost a week) and my next one where I feel almost normal (or at least less tired). Not so this time. I'm sure it's because my immunity is down, etc. It's a good thing I have almost four weeks between this last chemo and surgery. I'll need the extra week to feel better and recoup before the surgery.
Just wanted to let everyone know that if you don't hear from me in a week or two, I'm okay, just taking my pain meds and waiting for my legs and hands to feel better. Like before, I'll be reading my e-mails, just not always responding since typing is an issue. Thanks for everyone's well wishes. I can't tell you how much that helps me!
9/29/09:
I've got a surgery date! The Ta Ta's that went "BAD" are leaving on November 2, 2009 at 11:00 am (Karen's birthday-should I give the year LOL?)
9/26/09:
Still tired and sleeping most of the time. Hands are hurting but legs are getting better. I have issues with shortness of breath, which is probably anemia. I also have what I think is a post nasal drip and cough. Amazing for someone who hasn't been outside in days. I took an antihistamine and it helps (although it also puts me to sleep LOL). Otherwise same old shit, different day LOL!
9/23/09:
I'm doing okay. I have pains in my joints/legs/hips but nowhere near as bad as last time and the Oxycontin takes care of that well, it just knocks me out so I'm sleeping a lot. I'd rather sleep through the pain. Right now I got to the point where I don't need the Oxycontin 24/7. I just take it at night and if needed, I take a Percocet during the day.
My mouth hurts, but not nearly as much as last time. I guess it helps when you don't bite and infect your own tongue. I did run one fever on Sunday, but just that one day.
I had a visit with my breast surgeon. Her coordinator will contact me to schedule the surgery, which should be the last week in October/first week in November depending on the doctor's schedule. I'll keep you posted. Today I'm leaning away from reconstruction. I have some time to decide. They won't even do the surgery until 6 months to a year after my mastectomies anyway. The reason for deciding against reconstruction is that I might still have a wound opening on my stomach again. I'm not going to do that again!
Okay, going to eat something and check my e-mails. I'm so behind! If I owe you an e-mail, it's coming LOL!
9/17/09:
Today was chemo #5 (one more to go after this) and also my 50th birthday! Surprisingly, it was fun. I don't know if I told everyone but I brought cakes to Moffitt to the people I see when I go for chemo (doctor's office, lab, infusion center and valets). Of course, I chose a Maltese dog since we hope to adopt one after my treatments. Believe me, everyone knows of this at Moffitt LOL! All the departments absolutely loved the cakes. I'm so glad. I told them because of them, I will have so many more birthdays to celebrate and they deserve it! They really aren't recognized for all they do! Here are a few pictures:
THE DOG CAKE! OF COURSE WE'RE TALKING A PINK BOW FOR A GIRL DOGGIE AND ALL WHITE FOR A MALTESE!
THE NURSES IN THE INFUSION CENTER WHO SANG "HAPPY BIRTHDAY" IN DOG WOLFS LOL! THEY WERE SPINNING AFTER THEIR SUGAR INFUSION!
VICKI AND ME-MY PRIMARY ONCOLOGY NURSE! SHE TRIED TO ESCAPE PICTURES BEFORE BUT A CAKE DREW HER OUT LOL! AND YES, I DID MAKE MY HAT AND SWEATER. GOT A LOT OF COMPLIMENTS ON IT TOO. I MADE IT A WHILE AGO BEFORE MY HANDS STARTED TO HURT. I'M DONE CROCHETING FOR NOW. MY HANDS HURT TOO MUCH NOW.
9/10/09:
Finally, I am out of my stupor! Wow, it's been a bad two weeks. Two more rounds of that crap and I'm done though. I was given an antibiotic yesterday and today, with the exception of a little nausea from the antibiotic, I'm doing well. Even got up and cleaned the house a little. Nothing really major, cleaning the toilets, wiping down the counters, etc., but it's more than I could even contemplate yesterday so anything is an improvement.
Tonight I even treated Bill to dinner. It was great to get out of the house amongst the living LOL!
Just wanted to let everyone know I'm doing better and thanks again for all the well wishes!
9/8/09:
If all goes well I receive my last infusion on October 8 and am past my three week healing process by the Halloween weekend.
FYI-This is a picture of me and my Oncologist, Susan Minton, M.D.
9/4/09:
Still feeling miserable. The legs are better, but now feel like they do after you've had leg cramps for a few days. That sore muscle feeling. There is still some weakness in my legs. Even without Percocet I have the weakness so it's probably due to the chemotherapy and not the Percocet.
Hands and fingers hurt. The only way I can describe it is it feels like I have ingrown fingernails on each side of each 10 fingers and my two big toes. My hands are also swollen. Both issues limits my typing. I'm reading my e-mails, but can't respond to them. I'll just be updating the webpage until I feel better.
Another issue that has cropped up is mouth and throat pain. I'm on a relatively liquid diet (at the very least, soft, moist foods). I've got a nasty compound that numbs my mouth-just not as numb as you prefer. I have to brush my teeth several times a day, rinse with salt water, use Biotene (mouthwash, spray, toothpaste, gum-everything they make LOL). My tongue is white and pasty.
There is still the diarrhea, but overall, that's a minor complaint (and hopefully it stays that way).
I've also had issues with fever. I'm not sure how to handle that-they only want me to call when it's high or there are other symptoms. No other symptoms yet (unless you count the above)
Bill is exhausted. I hope he gets to relax some this weekend. He's had to work from home last Friday, Monday and yesterday (Thursday) because of me and my issues. I hope this all clears up relatively quick at this point. He's got enough stress!
I won't be in the pool anytime soon. Not with a fever that comes and goes. Bill will be! The poor man needs some R&R! Needless to say, we have no plans for this weekend. Hope everyone has a nice Labor Day! Fingers hurt. I'll be updating in a few days. Thanks for the well wishes and good thoughts! I really appreciate it all!
8/29/09:
I got the Taxotere chemo on Thursday and now my symptoms have changed. First of all, they give me steroids for three days before, during and after infusion to prevent an allergic reaction. The nurses hover over you quite a bit and make sure you don't get all red and blow up like the kid from the movie Willie Wonka and the Chocolate Factory (red though, not purple/blue). Since the infusion I've gotten a red face and neck (where my port is) but it seems to get better every day. They will watch me like this each time, as the allergy can appear at any given time. If it happens, they won't take me off it, they will just infuse me slower and probably give me more steroids. Meanwhile the steroids are another issue. They wire me up and give me hot flashes that go above and beyond a menopause hot flash LOL! It's so bad I sweat through my hats just walking out to the mailbox. I wear paper towels under them otherwise the sweat rolls down my neck. One night I slept with a ice pack on my head!
The other side effects of this chemo is diarrhea (no constipation as with FEC-we just skip to the diarrhea, and yes, it's started). I have joint paints that already started and feels like bad flu pain. It's in my shoulders, back, hips, thighs and knees right now. There is also bloatedness, some minor nausea for the first few days (nothing yet, so I'm guess I'm good here), and I have to be very careful in the sun. 70 or higher sunscreen and don't sit in the direct sunlight-into the pool and out under the lanai. I think I'll skip the pool for a few days so I don't get the red rash and sunburn confused. It's more important I know when the red rash gets worse so I can call the doctor and let her know.
8/21/09:
The name of the kids would have been Stephen Scott (not on the list but would have been our first boy). Second boy would have been Daniel (Danny) and Caitlyn (Kate) would have been a girl's name. Hopefully if we make it to Hurricanes Danny and Kate, they will be of no concern just like Hurricane Bill!
Not much new is going on. I guess I'm officially 1/2 way through chemo now. I start the other chemo for three doses (once every three weeks) this Thursday. Hopefully there will be no surprises and I'll get through that quickly too.
I have to mention how nice people can be if you have an obvious bald head and look like crap LOL. This works only for women-there are some bald men out there without cancer LOL! Complete strangers approach you to tell you that their sister is a two-time breast survivor, there sister-in-law is fighting the disease, their mother has it, etc. and to be strong as this will pass and your life will get back to normal. One woman told me she is doing the breast cancer walk and told me it's for me and all the other women out there with breast cancer. This is the same walk that Marlene is doing for me-Susan G. Komen on October 31 (click this link if you are interested in donating. http://www.the3day.org/site/TR/Walk/TampaBayEvent?px=3245754&pg=personal&fr_id=1301&et=fKjEg-V3YcL0XGOw8VDHdA..&s_tafId=157510)
Hopefully, we'll get into the pool this weekend. I think it's a 50% chance of showers on both days, but we'll swim between the raindrops (more like torrents but you do what you have to do!)
8/16/09:
First let me say the tropical depression that materialized off the coast of Tampa this morning was not caused by my hot flashes. They have been relatively minor. Okay, maybe a little bit more than that, but certainly nothing to cause tropical storms. FYI-Bill is a hurricane this year and has already formed, and to add insult to injury, and if we make it that far in the list, Teresa will be a named storm too this year. Isn't it cool that both are names are in the list? If that isn't weird enough, two names are on the list that we would have chosen if we had kids (decided many years ago, along with a few other names). I'm not telling what the names are? Can you guess?
Storm names for 2009
| Ana | Henri | Odette |
| Bill | Ida | Peter |
| Claudette | Joaquin | Rose |
| Danny | Kate | Sam |
| Erika | Larry | Teresa |
| Fred | Mindy | Victor |
| Grace | Nicholas | Wanda |
As for me, I'm good. Stuck in the house for nadir and this is the first time I'm getting a little stir crazy. I'm hanging on until Wednesday/Thursday and hopefully I'll feel well enough to take a drive to the mall or something just to get out of the house.
8/12/09:
Doing okay. Yesterday was a rough day but I seem a little better today. Seems with chemo if you wait 24 hours things will improve (or at least change).
Bill and I met with the radiologist and discussed radiation treatments (after chemo and surgery). After discussion (and of course, open to any changes that crop up between then and now) I will be undergoing 5 weeks of radiation to the chest wall. This is better than the six weeks they originally planned! There are some risks, but both Bill and I believe the benefits outweigh the risks. I'd rather go through radiation and hopefully, never worry about breast cancer again, then not do radiation and always have that doubt in my mind that a cancer cell is running amok in me somewhere looking for a place to reek havoc.
8/7/09 (Bill reporting...):
Terri had her third dose of chemo yesterday. Last of the FEC100, next comes 3 doses of Taxotere. She seems to be doing somewhat better this time. Still tired, but sleeping less. She'll be updating the site once she's past the fatigue stage. By the way, here's the picture she was trying to upload the other day...
8/2/09:
Guess what!!!!!! I finally made it into the pool. The last time I was in the pool was the weekend of April 18/19. My port was placed on 4/21 and I couldn't go into the pool for a week after and it turned out my hysterectomy was done on 4/27. Over three months worth of waiting, but it was worth it. Yesterday's weather was perfect. Today was okay, but we did have a shower in the afternoon. I was so pool deprived I went into the pool afterward (usually when it starts to rain we call it a day and come in and get dressed). Do I look like a happy camper or what?! Don't ya just love the swimcap? How retro! Fact is I swim in a kerchief. The swimcap drowns out when Bill is talking to me. I have a picture of my bald head, but I'm having trouble putting it on the webpage. As soon as I get Bill's help I'll post it.
7/26/09:
Not much going on here. I'm in the house for my nadir period and just biding my time. I was watching a tv show last night and I admired a girls haircut and thought, tomorrow I'm going to blow out my hair to look like that. NOT! Completely forgot I was bald! Okay, not totally bald. Still losing some hairs. I'd say I've got maybe 10% of my hair (and it's still short buzzed length). From a distance I look bald, but there are still these little hairs on your head. Think of your legs when you need a shave LOL! Enough that you feel them and if you look close you can see them, but not enough to make it look like you have hair. I wear a hat to bed to catch them and I looked inside the hat this morning-ewwww, gross-and it was only a two day loss! I just can't seem to figure out if I'm losing so much hair, how could I still have some on my head. These are the stubborn ones! I think in another week or two, I'll be bald completely, which will be fine with me. I hate this in-between stage.
This past week I was so much more fatigued than last time and it lasted longer. I also had a bad case of esophagitis-in fact, my whole digestive tract feels raw. Funny, nothing stops me from eating! I was having a hard time controlling my appetite. I would have 2 breakfasts, 2 lunches, dinner and snacks and still be hungry. Must be the steroids. The good news is somehow, even with lack of exercise and sleeping a lot, I didn't gain weight. Luckily, I have only one more dose of FEC before starting Taxotere. I was told by the doctor that Taxotere has no nausea or vomiting associated with it so that's a good thing, but there are other issues to be concerned about. I'm sure it will be fine. I'm just counting the days until I can have sushi again! I'm starting to crave it bad!!!
Don't know if I mentioned it, but I'll be seeing a plastic surgeon to get an input before deciding if I want reconstruction. I probably won't see him/her for another month or so but I figured lets see what they have to say before I make a decision about it. Since it's paid for by insurance (if done within one year), why not hear about my options.
7/21/09:
Still here. Boy, I thought I was tired last time! It's such a chore to do basic stuff, like take a shower or empty a dishwasher.
A few pictures from my last chemo. The smile on my face in this picture is because the port is working right! Notice the wig? No longer my natural hair LOL! My eyebrows are still mine so far LOL!
At 12:30 pm (on this particular day) I go to the lab and get my blood drawn from the port so the doctors can see the results before setting up today's chemo dose. If the labs are okay, they will put the order into the pharmacy so my chemo drugs are waiting for me when I go upstairs to the infusion area.
After I get my blood drawn, I see the doctors (or in this case, the physician's assistants). This is around 1:30 pm. From left to right, Laurie Sullivan is my oncologist's physician's assistant, then me (love the gown?), then Donna, my gynecologist's physician's assistant and Maria, Laurie's student nurse. Since my labs were fine, they ordered the chemo and Bill and I go for lunch while the pharmacy prepares the cocktail.
I spared you the lunch pictures. Nothing really to show if you've ever eaten in a hospital cafeteria. We can go out and come back, but it's not worth torturing the valets to get our car and return it again so we eat at the cafe. Of course, by the time we make it there, the actual cafeteria is closed in prep for dinner, so we end up at the little kiosk, but the sandwiches are pretty good. Not to mention, my appetite isn't up to a full course meal. I also take one of my anti-nausea meds right after lunch so it has a chance to work before the chemo is administered.
This is Bill waiting for my name to be called so I can start chemo (scheduled for 3:30 pm but they were running a little later today). He's working hard (I don't know how he does it, he does so much around the house too). I feel so bad for him but he keeps plugging along like a good trouper! Never complains! He's my strength!
Then finally, it's my turn for chemo. At this point screw the wig LOL! I'm getting snug and comfortable. They have nice toasty blankets for you, which is a good thing because I suck on ice through one of the med infusions and you tend to get cold. It's really a series of meds. I get Zofran, another anti-nausea med in pill form. Then they hook your port into an IV and give you Decadron (to help with more side effects), which takes about 15 minutes. After that drip is done, they do one cancer drug, Cytoxan, which is a 30 minute drip. There is another cancer drug, the name escapes me for the moment, but that's another 30 minutes or so-I also might be getting the order screwed up-as long as the nurses know what they are doing LOL! And then finally, there are the injections into the port. I think it's 3 syringes of red Kool-aid colored mixture and one of FU100. The FU 100 is the one I suck ice with because I read somewhere it prevents the sores from forming in your mouth and throat. It seems to work-I only get a sore throat and hoarseness for a few days, not the actual sores. I might not be getting the actual sores because I'm following the recommendations of brushing your teeth after every meal and not using alcohol based mouthwashes. It also helps to use Biotene toothpaste to moisturize your mouth. There is so much to keep track of and to learn to help yourself, but there is always someone to ask if you get confused.
The last time I had chemo, I crocheted, read, talked to the nurses, etc. This time I could barely keep my eyes open. It was a long day! After this, I go home, eat something light for dinner, and crash into bed for several days. I'm home by 6ish give or take depending on the traffic and most likely in bed by 9-10 pm.
7/16/09:
Good news/bad news. The good news is my blood counts were perfect and I got my chemo today (pretty bad when you have to consider this as the good news LOL). Bad news-although my wound is healing and is scabbing over (yuck!) I am to stay out of the pool for another two weeks. In essence, until this nadir is done to be on the safe side. Just ducky! Meanwhile, I met with the psychiatrist and she gave me relaxation techniques to help me relax to sleep better and one of the visualizations is floating in the pool (feel the water on your skin, feel the sun on your face, there is a nice breeze, look at the color of the water, etc). Where is the justice LOL! For what it's worth the relaxation techniques don't put me out really fast, but it did seem to help last night. Fact is, with all the chemo and anti-nausea drugs in me, all I'll do for the next five or so days is sleep round the clock anyway. I did get my chemo, ate dinner and it's 8:45 pm and I'm fighting not going to bed until at least 9:30 or 10 pm since I know I'll be only getting up to go to the bathroom and eat through the weekend into next week. I'm not sure I'm going to make my 9:30 pm time! I'm so tired now. The drugs they give for nausea are fantastic, but they make you so sleepy. Bill is working from home tomorrow just to be around if I need him. Otherwise, don't expect to hear from me until sometime next week when I come out of hibernation;-)
7/15/09:
Well, you can now call me "Patches". It would be much better if my hair fell out all together LOL! I have patches of hair, and patches of baldness. After every shower I rub my head vigorously with a towel and you wouldn't believe how much hair is in the towel. What amazes me is that there is still a lot on my head! Considering I had my hair shaved twice already (can't get that close to scalp to get it all off), it's getting creepy. Enough already. I'd rather be bald then "shedding". I made the mistake of putting on a white shirt to go to the doctor today. I had to change my shirt when I realized I had hair all over it. So thankful it isn't long and falling out. Short and falling out is bad enough!
Tomorrow is chemo day (gee, that three weeks came around fast). Round One done, Round Two tomorrow. All in all, if that's the worst it gets, it's not that bad. The fatigue is my major battle.
7/13/09:
Forgot to mention-it's been two weeks and they are right-they said I would lose my hair in two weeks. The two weeks was on Thursday and I noticed hairs coming out when I rubbed lotion on my scalp. I didn't know I had so much hair on my head LOL! Seems every time I rub lotion on it (to keep the scalp moist and stop the itch), shampoo, rub it with a towel, etc, hair comes out (lots LOL). I still have plenty left on my head. I'm now wearing a cap to bed to catch it all so I don't have to change the sheets every night! Bill clipped me again (I just got the buzz cut two weeks ago) since it was getting long again. The length was about the size of a long eyelash and now that it's trimmed, it's back to the length of a lower lid eyelash. It's less messy on my body when I rub my head when I have it shorter. The irritating part is that my eyelashes are falling out too and entering my eyes from time to time. Did I mention ALL my hair will fall out (legs, armpits, arms-use your imagination here LOL!)...I know TMI!!!
7/12/09:
Sorry I haven't been around. I've been so tired and fatigued, but doing okay otherwise-just the usual symptoms, changes at least twice a day. You get something under control and something else pops up. Friday night was my first night out since nadir. We went to the local Chili's restaurant. They had a "balloon artist". Of course, I had to get a balloon LOL! I asked for a spaceship or dolphin for Bill. Unfortunately, he didn't know how to do either, so a flower is what I got LOL! I've been looking for a flower for this denim hat I have. I think I found one LOL!
This Thursday I go again for chemo. Overall, the first one wasn't too bad. It's just that overwhelming fatigue. The rest of the symptoms are tolerable. Oh, yeah, then there is the chemo brain LOL! When I first heard that term, I thought it was just a excuse for senior moments LOL! I found out instead it is much more active and creeps into your life multiple times an hour (sometimes minutes LOL). Other than the tiredness, it's the most frustrating part of the chemo.
7/4/09:
I have a new neighbor! Isn't she adorable?!! Two more ta-ta's entered the world!! Her name is Ayana Rebekah and she was born on June 30 at 8:04am. She weighed 7lbs 15oz. Good job Ellen! Feel better soon! Congratulations to dad, Ricardo, and brother Isaiah!
7/2/09:
Just a quick note to let everyone know I'm still here! Just tired as all get out! I am sleeping, contemplating sleeping, napping, resting my eyes, etc for the better part of my day. I just want everyone to know that I am reading my e-mails and keeping up with that, but don't always have the oomph to respond, but keep them coming, I love reading it all!
The good news is no infections or any fevers, so with any luck I'll breeze through these low immunity periods and finish chemo very quickly. I am inside and away from people to minimize infection, although when I answer the door, it's sort of intimidating. There I stand, with a hat to cover my bald head and a germ mask on my face. I tell everyone that I don't have swine flu or anything, it's just for my protection over the common cold, etc. I look like a scene from Outbreak. Of course, the doorbell has rung more times this week than I can remember in the past. At one time, I had three different types of visitors here. The Maids (thanks again to Ciber Tampa Help desk-you have no idea how great that is!), the lawn fertilizer guy, and the refrigerator man (who will be on our Christmas pictures since he has become one of the family (which should be explained in the next paragraph if I can remember).
Regarding the refrigerator man. Why is it when you need something really really bad it doesn't work-in my case, it's crushed ice because it helps my mouth and throat from hurting. For whatever reason, we took a service contract out on our appliances, mostly because our air conditioner makes a funky noise and we figured we'd be covered in case it broke completely. Well, we've had someone out to visit the refrigerator every other week for the last 3-4 months. It's still not fixed. The one guy gave up and they sent another guy out. He didn't get it right either. He is ordering a new fridge circuit board and we'll see. The last circuit board took a month to come in.
I guess that's it for us. I'm stuck in the house/pool area until July 10ish when I should be done with nadir (prone to infections). I do have a doctor's appointment on Monday but it's not a long one. We do plan on BBQ-ing if the weather holds and I get to watch Bill swim! For those who asked, the wound is about 1/4 wide and less than 2 inches long.
HAPPY FOURTH OF JULY!