Contemplating

Today I am a little better than last time, yay! I think all these new meds help with the association nausea and the dry heaves and the throwing up. This other medicine does seem to help with the hot/cold flashes too. Lots of drugs in me right now, I will know better in three weeks when the chemo is out and the drugs are out and I'm just on the one for the flashes. But I'm a little stronger today. I'll go get my shot in an hour or so and I'll be back in bed. Those shots are just the same as being run over by a bus and then it back up over me.

Thank you for all the opinions, suggestions, and prayers for my decision ahead of me. I really appreciate all the input. Go ahead and give it to me, it doesn't hurt to hear your real opinions, it will ultimately be me that makes the decision, but I like hearing all the different points of views.

What's a Girl to Do?

I finished chemo #4 today and I'm just not feeling that great about it. Physically I feel ok, better than #3 and I'm sitting out on my porch eating and typing. They gave me lots of new drugs today that make the nausea and association nausea much better! To help with my mega hot/cold flashes they have started me on a medication that supposedly helps with that, and I'm so glad because they are BAD.

Here is my decision delimma:

I currently take a regiment called TAC. Humans (at this point) are only allowed x amount of A from TAC. If I had done all 6 treatments A can never be used on me again. It is so toxic that that is life threatening. Meaning at that point the benefits of the chemo are no longer outweighed by the benefits of the A drug. MANY cancers use the A drug, so if I ever needed it again, I'm out of luck.

So she suggested to me to drop the A and just take two more regiments of T and C.

Then have a full course of radiation, which is five weeks.

THen I would have 6 months a MRI and 6 months a Mammogram/sonogram.

I am also currently enrolled in a study that uses a pill similar to Boniva but it's from Europe and it's not approved here yet. (you know that red tape governmentally controlled stuff) anyway the study has a 50% rate of blocking the cancer from returning. I take the pills for three year (paid for by the study) and it also makes the pain less when my bone marrow is rebuilding.

They can give me NO evidence at all between 4 and 6 regiments. She said today that I would have to follow an exercise regime, eating regime, the study, vitamins, and yoga is encouraged. I would have radiation and I would be monitored closely. But that they can not prove a difference between 4 and 6. She says most people don't make it to 6 because the toxicity levels because in the dangerous zone.

So she told me to take three weeks to decide if I want to do the T and C. (T and C are NO walk in the park).

Again, no proof it improves odds of cancer reoccurrence.

What's a girl to do?????

Chemo #4

The Dr. didn't confirm it, but said most likely tomorrow will be my last chemo treatment. I sure hope so!! Because I have no plans to show up for any more! I was whining about my treatment last night and here's what William had to say "Mom, just deal with it, one more treatment and you get to live a long life." See, no sympathy here! I understand that people don't really know what to say but I want to whine a little bit. So I'll whine on my blog.

Whaaaaaa I don't want to go tomorrow!!

#1 was tough, just knocked me out

#2 was pretty easy, up and around quickly

#3 was TERRIBLE and I was so very very sick

#4 I just want to skip

Supporters tell me it's going to be like #2, and that's what I'm going with, just to get me in the door. Just yesterday was the first day I actually drove by the building without gagging. It's the strangest thing, the word chemo makes me gag. Typing it is easier!

I haven't put up any Christmas decorations yet either. Christmas was very nice this year. We had no company at all, family being considerate of our situation and letting us have a quiet year, eerily quiet. (secret- we prefer company!) We have had no urgency at all, which is probably why all my decorations are on my dining room table and not in their boxes. I look forward to next year, crazy busy times and lots of company! :)

I received a very special card yesterday from a dear friend and in it was a donation to the American cancer society, that made me smile so big, thank you C!!!!! Those are the sweetest and really give me so much support. You have no idea how much support it takes to get me into the building tomorrow. I save it, I have a "support account" inside me that records all cards, emails, texts, and calls and that's what gets me through the door, THANK YOU!!!!

I do have some side effects kicking in, it's my two temperatures, freezing and burning. It's making sleeping very difficult, I wake up so many times a night in a sweat and then freezing, over and over and over again. It's making me look really bad, dark circles under my eyes. My eyes are acting strange. I've lost some eye lashes, but my eyes are twitching LOTS and I'm having a hard time seeing, this is lots of fun.

You know what's weird, no matter what I do today, tomorrow will come.........:(

Only Me

Guess what, I'm allergic to my wigs. Yup, you read me right, I'm allergic to my wigs. HUGE gigantic red welts all over my bald round head on Sunday. I had tried it on Saturday night and since it's cool here (remember I live in South Florida, the tropics) so I thought I would see what it felt like, so I wore it for about an hour and it was driving me crazy. I finally took it off and I looked like a light bulb with the chicken pox. I also have a huge scratch on the side of my head, not sure where that came from.

Last week we had two feet of water in several hours. We were stranded in our house and Whitney was stranded in his car, long story short I finally was able to get to him about 2am. However, on the way my car was swallowed by water and I lost the steering and was floating down the street. At this point I looked up at the sky and said out loud, "God, please stop, I can't take anymore, I need you to guide me through this water, to Whitney and back home safely without any drama."

I didn't say it in a small voice either and my window was down (stuck down) what I didn't know was there was two people standing in their yard (waist high) listening to me AND in my nervousness to get to Whitney at 1:30am, I forgot my hat, so my bald head was with me.

They started clapping and cheering "You can do it". It was at this point I just had to laugh and low and behold my car got it's steering back and an hour later we were at home AND my car still works.

See, so when my head broke out in it's huge rash, I knew I had used my "red phone line" to God and I would have to deal with this on my own.

I just sat on my bed and debated what to do. I had a session meeting before church at 9am, and I knew I would see the pastor, so I went to church in my Santa hat. I did ask before going to service if he thought I was being disrespectful and he said no. So I sat in church in my Santa hat. I will have to say it was a little uncomfortable. Then I remembered at Easter that used to the big deal, wearing a hat. That made me feel better for about 5 minutes. But I got through it and everyone was highly complimentary and sweet.

What do I do after Christmas, will I be the lost elf?

I got another beret that's hot pink with sequins on it, I wore it yesterday and got lots of compliments, got home and took it off and had a hot pink head, all the dye in the hat had rubbed off onto my very very white head.

I thought William summed it up well, "Only you Mom, only you!"

Naughty or Nice?

Yesterday was the day, I made the turn, I'm back to feeling as normal as I feel with all this fun. I think though, sometimes it would be better if I just stayed at home. Being positive and smiling and listening and answering is exhausting sometimes! It takes a lot of energy to keep ECT at bay. It's causing me to find more silver lining.

I think the general public is rather annoying anyway, but you can't really just say what you want or how you really feel because then you aren't socially acceptable and it usually has some sort of lingering effect. If you could just say what's really on your mind and people just hear it and not react personally, then (I think) conflict would be solved all around the world! But we're just not there yet in our social society. I have noticed a trend in that direction in the newer sit coms and I love it, hoping it catches on.

So what's the silver lining? I get to be socially awkward and everybody just has to put up with it! :)

Can't Trick Chemo

Yesterday I did something I have never done in 15 years of staying at home. I took a day and did what I wanted to do (between 11-1:30) and read a magazine, took a bath, watched some DVR'ed events and basically just relaxed. I was thinking if I relaxed I would trick my body into feeling better.

Didn't work, still hanging out in bed this morning. I am thinking that tomorrow I am going to be regular and then stay that way until 12/29. That doesn't mean I get to just hang out here today! William needs his wrestling clothes brought to him at 12:30, the grocery store is calling my name, Nick needs to be picked up, William needs a ride home, Nick needs a ride to swimming and William has three midterms tomorrow and Nick has one. Dinner will be another need and then it starts all over again until Friday.

It's ok, distractions are good, it "makes" me better.

Strange Trip it Is!

Thought I had it under control. I thought it took three days to lay and be zombieish and then a day to get my baring and then the next day I'm somewhat back to normal. Not the case this time. I am still not feeling well. I have had a lot more vomiting than in the past which is rather annoying because I'd rather have my toe nail extracted then throw up. I have this dry heave thing. It really disturbs my body too, it makes it really tense and then it takes me a while to unwind after this. NOT FUN, just saying.

I'm so very glad I did everything I really had to do last week. I do think it's better that my next and LAST treatment will be right after Christmas where I am sure I will have rested a bit more than last go around. I just have to get through this week (finals and project and parties and meetings) and then I'm in the clear for a while.

Then I guess we're going to have to address radiation. Sigh, more doctors, more schedulers, more appointments, more bad stuff in my body, I need to set my goals on May, where things will be done, I look forward to being done..........

Chemoville

How was chemo #3? It was awful and hit harder than any of them have hit so far. I was sick, very sick and no meds seemed to help. It completely sucked. But I'm on the upswing. Today I have been awake since 11:30 am and not laid back down, not thrown up, not had chills/sweats, and my body stopped hurting. I'm to the fun stage now of no taste (even water is gross) and shaky and moody.

I am wondering if I wore myself out before the treatment. I always feel so good right before the dreaded injections, maybe I should rest more. At least the next one is after Christmas and before New Year's. That's ok, not a big NYE fan anyway!

Someone asked me "how would you sum up Chemo". It SUCKS, that's how I would sum it up, yea you can do it and yea you survive but it just takes these HUGE chunks of reality out of your life and it is miserable. Ok, I'll try and stop whining now..........

The house is ready, bring on Christmas, today we're going to make my favorite gingerbread houses with the boys. We've done this for a while now and it's fun and it makes me smile. It's windy and rainy and humid outside, so staying inside is easy. I look foward to next week where I start to re-enter life and the world.

Thank you for checking on me and emailing me and sending me cards and funny things, even if I don't respond BELIEVE me I'm very of them!!!

Feelings About Test Resuls

I didn't hit on this earlier, but I am so so so relieved that my test results came back the way they did.....so very glad that I don't have that monkey on my back. I feel so grateful for all the prayers that I am receiving and know that that is what is really helped me this whole time.

Today's treatment was ok, they gave me one new medicine for reacting to smells. I think that's funny (not funny at the time, I was wayyyyyyy too sensitive to smells and it was making me so uky) but it's funny they actually make a pill for that. So while I'm not for drug makers running and lobbying at the detriment of the medical industry, I find it great that they make a pill for smells and block their ability to make you nauseas. That rocks.

I am always good this night, well not great, I have heart racing and nauseas and my joints ache and a massive headache but I'm not weak. I didn't finish my treatment until 4:35, but they are going to let me get my shot tomorrow at 4:45, since I had that one crash when I had to wait a day.

Sleepy, going to rest, so glad I'm down one more!!!

Genetic Testing Results

I am gene negative!! As a friend wrote, "I don't know what that means but it sounds great!" It is!!

It means that I don't carry the mutated gene that passes cancer from one family member to another. It also means I don't need to get a mastectomy or hysterectomy and they will start screening me right now for colon cancer and the insurance company will cover it. It also means that the baseline for our blood related family for mammograms will be 31 and the insurance will cover it also! (of course, this is how it relates to the current healthcare system we have).

It means that my boys are NOT at a higher risk of prostate cancer!!!!

WOW, what a relief!!!

We also chatted about the 4 vs 6 treatment plan and my Dr. is 90% on board. She wants to chat with another oncologist to make sure that is the best treatment I could get (assuming I don't do 6, they want me to do 6). Another relief.

About to start the drugs. I am trying today to have the mind set that it's ok I'm having all this in me, so that the drugs work faster, do a good job, and get out of me as soon as possible. So that's what I'm telling my mind to tell my body. I'll let you know if it works!!!

Chemo #3

Today's the day, #3. I meet with the Dr first, I am hoping they have my genetic testing results. Although I found out recently that those results can be "inconclusive" what does that mean?? I mean I know what the word means, I just didn't know that was an option for the results. That would be frustrating.

I did some things different this time, I've had a enormous breakfast (and when I get there I get to weigh-honestly for the first time in my life I don't really care what I weigh-my window of opportunity for eating is pretty small so when I can eat, I eat!) and I'm down anyway. And my appointment is a little later this go around,so I've had coffee and started laundry. I keep thinking if I do normal things my body will feel normal. I am hoping that this time I will only feel bad until Thursday. I felt better on Friday last time, that was a day sooner than the time before, so I think I can reasonably set that goal. The bad thing about the time push back is that I might not be able to get my shot on Wednesday. I sure hope so, poor Whitney has jury duty. He postponed it last time I had chemo and honestly the Broward County Justice office (I'm sure that's not the right name, but just go with me) doesn't care I have it again, he has to go this time.

All Those Who Have Been There for Me

It's so crazy, twice now I've dropped off people at the airport and had to pull over I was crying so hard. Everyone tells me, "Donita you are so strong" not feeling that strong today. When I dropped off my bff last time she was here I just bawled. Same thing today, dropped off Catherine (sil) and just had to pull over. I am not usually so emotional (family may disagree here) but I'm not, I can usually distract myself from crying so hard I have to pull over. I guess in a way cancer is providing me with the ability to grow my in strength and character, it's just such a painful growth.

Catherine didn't come because I physically wasn't ok, I couldn't be alone and Whitney was on his annual hunting trip back to Texas. I couldn't take that away from him, this year has been crazy with changes and my having cancer wasn't going to ruin his trip. I just knew I couldn't be alone and Catherine said she would come. We had a grand time, saw lots of the boys life and had some special moments that will be a smile in my memory for a while.

It's interesting those that step forward. Sometimes it's the person I don't hardly know at all that picks up my child and hauls him half way across Florida to a water polo tournament or a person who drives twice as far to bring home my child or the person who cooks repetitively for my family or the person who just calls on a regular basis to check on me and then there are those great cards. Then there are those who have known me so long that I believe it's too painful for them to believe that I am suffering with this pink path and can't bring themselves to know the current me. That's ok, I understand that, illnesses are very hard for people and I am grateful for their friendships and know that when this is all over, they will be there for me then. There are so many stages where I need so many people and I am so blessed that they have all been there for me.

I saw a man with no legs in a wheel chair when I was driving home from the airport and I thought "I hope he has someone that does something for him on a regular basis and someone there for him when he's down" I could be worse off, just the small things, like good insurance.

Tomorrow is treatment #3, which I am dreading. Trying not too, but I am. Talked myself out of a few panic attacks the last 24 hours (much thanks to Catherine and great distractions and knowing that if I did freak out she would be there to calm me down) and I'm trying to just breathe. I believe there are stages to just getting ready to take the chemo. I think you are 1) denial 2) anger 3) resentment 4)acceptance. I am currently just short of acceptance, but I'll be there before tomorrow morning.

Hat update: I have received positive feedback from the Santa hat all weekend. No crazies or rude comments, just positive reinforcement that I am indeed "in the Christmas spirit"!!! Maybe postal druggie doesn't care for Christmas!!

Here We Go Again

I've had company the last weekend, she's done a wonderful job of distracting me that I have chemo on Tuesday. I just don't want to go, I don't want to go at all. I will try not to whine, but the good weeks are good and it's tough to want to sign up for this again.

My taste buds are still annoyingly not working, but hey......

Still wearing the Santa Hat and now I just get TONS of comments, it's funny/sweet/interesting and hey, it's a head piece. I'm thinking about going nude, I tried to wear the wig, it just itches like crazy!!!

Loved my company, glad to see my husband again tomorrow and very grateful that I have someone who took days off work, left their own family, took time out of their holiday season and boarded a plane to come and babysit me for the weekend. I love my family, all of them!!!!

Been Thinking

I've been trying to figure out why I'm so bugged by the fudge. I thought I would dig deep into my thoughts (and you know, that was a short trip, my brain is rather shallow these days) and I think I may have figured it out.

When you're faced with enormous obstacles in your life, one tends to just swallow hard and do what your supposed to do. Sure you might have a mad day or a sad day or a "why me" day, but over all you suck it up and do it. If that means losing body parts or having surgery or bad bad mean chemicals or having numerous tests or whatever, you just do it.

I think what makes the fudge so difficult is that is the tiny things that really (after time) seem to get to you. The tiny things seem so much harder to overcome. And I know that people who aren't going through this don't always understand because it seems logical that all of the tiny stuff will eventually be able to come back to you whereas body parts don't, and one should be able to move past it easily.

I think it's because the big stuff requires so much of your positive "I can do this" attitude and you really get "up" for it but the small stuff hits you out of the blue with no warning and it just seems so much harder to overcome. There doesn't seem to be an end in sight with the small stuff either, and again with the big stuff you have more of a "schedule" to rely on, small things are simply just little surprises (not good surprises) all the time.

There becomes a mountain of surprises and one day you just can't do it anymore, it's the surprise that crumbled the mountain, you know the straw that broke the camels back, it just becomes harder and harder to keep that smile going.

Don't worry I can still "do it" I'm just getting close to being pushed past the point of no return........

This Might Actually Break Me

I think I've been a relatively good sport about:

1) random rude comments

2) strange stares

3) being scared about living a long life

4) going back for surgery after the first one didn't quite cut it

5) port problems

6) port problems

7) stupid Dr schedulers

8) losing my hair

9) spending a TON of money on cancer

10) chemo

11) upcoming radiation

12) not getting to go to football games

13) not getting to go to swim meets

14) no nail polish

15) missing family parties

16) not seeing my family

17) having three new scars

18) being very nauseas

19) being prodded and prodded

but the one thing that might actually break me............... I have no taste buds right now and I can't taste my Grandmother's Christmas fudge that I made, who can celebrate Christmas without being able to taste the fudge?? :(

Santa Hat

I've been sporting a Santa hat lately. Not one of my $100+ wigs or my 300 hats, but a Santa hat. I've always worn one, you know, I'm just a little fun sometimes. :) I'm wearing my hat because to me mostly everyone knows I'm in chemo and my hair is gone, so it seems silly to wear my wig around people who already know I'm bald. I feel like a bad magician.

Yesterday I went to the post office (I know, the post office again) and I am standing in line with the rest of Hollywood and this lady walks up to me, stares and me and walks off. I am getting used to the staring part, so I didn't think much about it. Then as I am one away from being called, she walked up to me and said "I think you look ridiculous in that hat." Oh dear, ECT is now unleashed..........

"Would you rather stare at my big bald chemo head" ECT says smiling.

"NEXT, shouts out the postal worker"

I walk up to go get in line and leave the lady with her mouth hanging open. She then follows me to my line and says....

"You know, they make wigs for that" mean old witch says.

"I know, I own two of them, but this is the holiday season and it's supposed to be filled with joy and I find joy in my hat, last time I checked there was no city ordinance against wearing Santa hats in public in Hollywood, FL, so I plan on continuing to wear my hat with or without your blessings, and may your holiday season be filled with love and joy." ECT responds.

Then I go about doing what I went to the post office to do and she just stands there. Finally, a man behind her says "hey, leave her alone, she looks awesome in her Santa hat and I bet it made everyone in here smile." The audience gives a collective nod.

End of the day.....

mean lady O

bald chemo Santa wearing hat chick 1

:) people are crazy!!! Sometimes good crazy, sometimes just crazy!