Starting Chemo May 2008

Excuse me, Chocolate Chex?  Randie, I'm sincerely sorry you had a forced march to Bataan rather than a leisurely stroll through Bali (I laughed out loud at your first line, in spite of myself), but so help me, if you are stringing me along, leading me to falsely believe that there is some form of manna on my grocer's shelves known as "Chocolate Chex" then so help me, in the name of all that is holy and bald . . . !!!!  Choco Chex? Be still my heart...

Nurse-man really needs to find a new job, perhaps assisting my original breast surgeon at St. Luke's-Roosevelt, Dr. Asshat.  They would make quite the sadistic team. They could cater to masochistic women with breast cancer.

Congrats on embracing the Dome!  Is it over the top to think of this as a form of a public service and activism?  In a perfect world, I'd like to see a movement of women and girls with cancer rocking the bald.  This is a Face of a Woman with Cancer.  Possible rallying cries:

We're here, we're hairless, get used to it! 

Say it loud, I'm bald and I'm proud! 

Hey, hey, ho, ho, itchy wigs have got to go! 

Say tell me what chemo looks like. THIS is what chemo looks like. 

(Sorry, I'm overdue for a protest and my plans to go to the Pride march this weekend fell thru.)

Randie, I do hope you have minimal side effects. I'm glad you've got another infusion behind you.  You have a helluva way with words, I gotta say. 

Randie - What a story!!  I like the one "stick policy", although I have not had to enforce that yet.  They have been good and I brought them cookies this morning for my follow-up.  I have also been entertaining rationales for sporting bald and thought I might try "I thinking about joining a prison gang, so I thought I'd try bald first" and see how that goes over.

Rock - Yes, there really is Chocolate Chex, Virginia.

Karin - Love the picture!!

I think I'm having a better day 2 this time.  I found "plum juice" which is made from the same plums they use to make prunes, but just juice it first.  It seems to be working against the constipada - yay!  I have spent most of the afternoon making plans for Disneyland - it could be a worse day. 

This will be really quick - I'm on a mini-vacation from cancer and chemo, but I just had to peek, and saw Randie's nurse-from-hell story.   Most of the chemo nurses are so great, it seems like almost a betrayal to get a bad one.  On the "one stick and you're out" policy, which I love . . . I once had a friend who was going through treatment for lymphoma look right at the nurse who'd just messed up two attempted blood draws and say, "I'm not your goddam pin cushion." 

 (What did I think at the time?  That he was being rude.  What do I think now?  That he was being very restrained.)

 Have a great weekend, everyone. 

Linda

Otter,

Wow, does that take me back. You can use your Little Dab'll do ya. As for me, think I'll stick with an old favorite from the earlier 60's that I used as a kid. Don't think the comercial dates back that far though.

Enjoy the day, Karin

http://www.youtube.com/watch?v=518TT5Z0CKE&feature=related

Hi,

Question for those who've been having chemo a bit longer than me.

I had my first tx on June 16. I'm getting TCH. I called the doctor today because of pain when I urinate. Because it is a weekend, rather than have me go it to do a culture, she  just gave me a prescription for Cipro to treat what we are assuming is a urinary infection.

Now I've noticed some bleeding. And it only just occurred to me that I should be getting my period about now. Did anyone else get their period after starting chemo? I guess I thought it would stop immediately. Mayb not.

Thanks,

Jo 

Good evening all!  I just came out of my 27 hour sleep-a-thon.  Step daughter came and all went well.  We knew she had problems and had been in rehab last September.  She's been dry since.  She also has been diagnosed as bipolar and is receiving treatment.  She is a completely different person. She kept the diagnosis from her dad, although we did know about rehab.  We are both so proud of her.  We had a wonderful visit.  The best I've ever had with her without having to be careful about every word that came out of my mouth.  I did my tx alone so that they had time to themselves and I think the time went by faster than ever.  Of course, I slept through a big part of it. We went sailing the next day, and she did all of the "first mating".  We started planning a surprise for her dad's 60th, and she and her brother will be flying back to surprise him.  Fortunately, all of my se's held off until just before she left.  Then it was just the exhaustion.  I slept all the way to the airport and back home, yesterday afternoon.  I've pretty much slept since then, except for about 6 hours that have been scattered about.  The other good news is that I really haven't felt bad.  Usually at this time I'm really achy, but I haven't even needed any aleve.  My mouth tastes yucky, but food itself seems to taste good.  I'm really craving a steak, but am afraid that it won't taste good and I don't want to have that happen.  I think I might still be on a high that I don't have to go in for any more treatments. 

I hope everyone has a good weekend and your ses are minimal.

Lee

Hey you wild women.... I am BAAAAAAAAAAACK! First....commentary. Adrienne, not a baby...remember my alka seltzer 3 AM episode? Everything is scary. Hope the eye thing was a one time only issue. Also, I am right behind you. I do A/C #4 on 3rd of July then on to Heceptin/Taxol so I want to hear more from you ...RobinK..your last chemo is my halfway. I will be celebrating for you and expecting you to jump in when I finish and celebrate with me. Congrats. The rest of you who are talking about the feelings of freaking out about chemo...I am so there as well. Here is one thing that I think I told you about...maybe not, maybe it was on my blog, but this has really, really, really made a difference for me even thought I laughed it off. My friend, Janet, is a first grade teacher.

She told me I need "a visual" because we talked about how 8 rounds seemed like a zillion and how it could get "drawn out" due to all the blood stuff so I couldn't count on an "end date." She kept saying, "YOU NEED A VISUAL." She brought me 24 colored blocks...they are called math manipulatives for those of you who are around elementary kids. They hook together. They are plastic and different colors. We decided to use 24. 24 is divisible  (divisable?? can I spell? do I have a degree or two in journalism? do we care?) by so many numbers -- 1, 2, 3, 4, 6, 8 and 12. We said each of my 8 treatments were three blocks because we knew if these chemo treatments kicked my ass they would have to spread them over a longer time and we could make them one block or two blocks or whatever. We built a tower (this was already into the first round so we took three off)...We had one tower with 21 and one with three. The second treatment, we had 18 and 6. I sooo dreaded number three because at least at number two I was twenty-five percent done. But this is where the visual really kicked in. After chemo number three, not only did I add three more to make my little tower nine, but my big tower got shorter from 18 to 15. That third chemo seemed so insignificant, but adding to one tower while lowering the other did some kind of major psychological boost...now, my tower has 9 and 15 which still means I have five, but this week when I finish that fricking A/C, my towers will each have 12 and I will truly feel and be half way. But when the next one comes....the first taxol one...hopefully just two weeks after, my done tower will grown higher and my what I have left tower will grow smaller. Ladies (and Wayne -- did you ever come back on?), for some reason, that is making a difference. We have an L-shaped house and I have those towers in our bedroom window. Sometimes when I am sitting on my deck I can see the towers and I get this subtle message that I am moving forward. I will stop raving about this now, but it has seriously helped me. That third one really was hard for me, but the tower thing helped me see it was another foot forward (or another three blocks anyway).

Linda, biotene has helped me and salt water helped me with a few minor mouth sores. Okay, on to vacation.

We were in a houseboat with two other families on Lake Roosevelt in north eastern Washington. No malls. No restaurants. No stores. Just pristine beauty and two other families who allowed me to just be. When I felt like it, I would do a load of dishes. All the rest of the time, I just relaxed. It was the nicest gift anyone has ever given me -- the gift of being.  My toughest days begin the Tuesday AFTER chemo and has lasted all the way to the following Sunday at worst but are really bad on Tuesday, Wednesday, Thursday and beyond... When on a houseboat in pristine fresh air and perfect weather, one can handle headaches much nicer. We were with seven kids ages 11-15 and for two days with 10 kids up to 17, but I could get away from noise and listen far enough away to their late-night card games and muffled giggling and enjoy because I was not in the thick of it. The stars....women, we have to take a trip to the stars one time just to remember our skies before our cities blotted those stars...wow....the stars were so calming.

Sanitary? I think not. It was gourmet camping, but for being at days after chemo, I was slightly worried I would die but I "showered" by swimming in the 60-degree lake water. I innertubed (worried the whole time about bouncing on my port). I hiked an hour with the adults one day up a hill that knocked me dead, but they waited and were so kind. My 11-year-old caught his first-ever fish -- a wally which our friend prepared as a fabulous delicacy. We went with foodies so the food was organic, healthy, delicious and wolfed down by the teens as well as the rest of us. One day, my dh, Marty, and our friend, Todd, took the little speedboat into the marina and brought back 10 chocolate soft serve ice creams. I cried once (getting that I hate that I am so out of it feeling while feeling so blessed to be with such kind people)...now when I cry, I have few eyelashes so I can either own up to crying or blame the eyelashes....very cool excuse. Bottom line? I was lucky. I have the next two weeks off from work as our building is closed. I have one management meeting one day, but other than that, I am a free woman which makes me hope to get through the last A/C before the next four rounds. Remember, women, they said it would suck and it does. The survivors say this is how it is and it is. It's just that until we experience, we don't believe it. 

One more observation then I will let you all go....for those who are still reading ... Remember when you were preganant (for those who were...and for those who were not, stay with me for a minute) when because your condition was so public, perfect strangers would come up to you and tell you their birth stories (while patting your belly? Oy!) ... but remember how so many shared their horror stories? You thought, hey....keep it to yourself. But they didn't. Now, those of us who  are parading around bald or hatted with our baldness showing....we, too, are very, very public cancer patients. (I never know to say cancer survivor, cancer victim....I hate that one) but cancer somethings....right? Okay, so, I am in the airport line with our 15-year-old today...he left for LA for six weeks -- bye bye, I will miss him, but that's another conversation . . . so we are in the line and a woman looks at me and says, "It'll grow back honey. I had cancer in 1989 and look at my hair now (and she had lovely hair). And a woman RIGHT behind her said, "Me too." I am here nineteen years later -- don't sweat the hair...it's nice to see you bald. We laughed at my LOPSIDED self as that is the LAST thing on my mind right now and I was wearing a tank top and it suddenly dawned on me that this is OPPOSITE the pregnant deal ---- the survivors are surviving and living and traveling through slow airport lines and telling me how long they've been around after. The sadder stories . . . the ones who died . . . they are, sadly, gone. They are not standing in an airport line to say, "I didn't make it." or... "That chemo wasn't worth it." They are gone, but we do not have to deal with their stories as the success stories are STANDING their sharing. Women....buck up. We are going to get through this and we are going to do it with flying colors as some of us already have. We will whine and cry and be sick and we will feel so sorry for ourselves and we are alllowed to do that and we will share that crappy stuff like every time I go to the bathroom now for a BM, I bleed and I HATE that, but we will get through and we will survive because in our long lives, this is a short time. And that will be us in 19 and 29 years telling someone, "Don't sweat the hair, honey. You'll get through." WE WILL GET THROUGH. I have FIVE more of these rounds, but after Thursday I will be HALFWAY. Each of us will encourage one another as we have done so far and we will all get through ---stupid ports intact, cotton mouth, feeling like we have been run over, but we will get through. 

MsKarin, I like your avitar as it really shows your face. I am going to try change mine as I've gotten a little more bald. I like your glasses. They are cool. I have to stop as most of you have already dropped into a deep sleep. Hey, I could post long posts and it would help us all with our sleep. 

Rock,

Thanks for answering my question, re: periods.

And the advice on Cipro. I am taking a probiotic and drinking kombucha tea to hopefully restore some of the good bacteria.

I haven't kept up with the May forum, but I did see the news about your genetic test. I am really sorry; that sucks.

You can PM me when you want my SA contacts (You wrote "DC" contacts in a June 16 post, but I think you meant "SA").

If your upcoming tour through New England includes Boston, let me know if you need any recommendations (that's where I am now). 

Jo 

Donalee,

As much as I hate taking antibiotics, I did start on the Cipro. Normally, I would have drunk cranberry juice and sought out something like AZO (which I didn't know about, but will definitely use if I need to post-chemo). But, I figured I better not fool around and I called my doctor. I would have prefered she not be so cavalier about prescribing antibiotics (i.e., had me come in to do a culture). 

Was anyone told not to use tampons? I didn't think to ask my onc. I haven't so far, but am heading to a dance class this afternoon, for which I'd like to use one... 

Jo 

Roc, Christine, Eddie, - Thanks for the compliment.

Christine - Thanks for sharing the "Daily Word". It is so fitting for our group.

Eddie - YES way I am a grandma, in my case, Mom Mom. I just turned 55 on the 3^rd of this month. I love my camera. It has a setting that hides a lot of flaws. In my case it hides ALL my wrinkles, lol.

Jo - <<assuming it is a urinary infection>>. During my chemo class my onco nurse asked if I liked yogurt. When I said yes, she said "Good, eat one everyday to help ward off Urinary Tract Infections." I eat an Activia everyday and so far n/p.

Enjoy the day, Karin

On the subject of bald and shaving

Sorry for the double post. Also posted this over on "Anyone on just Taxotere and Cytoxan".

When shaving, what attachment if any do you use on your electric trimmer? Mine has a 1/4, 1/8, 1/16 or use none. For this initial shave we used the 1/4. I think I would like to go shorter. I am way past the sore head stage so I don't think very short stubble would be a problem. Has anyone shaved just using the trimmer without using any of the attachments?

Enjoy the day, Karin

Ok All,

I'm going to try this again. On June 27, 3:30pm, page 36 of thread, I tried to include a picture of my grandson precutting my hair for shave. Think I got it this time. Here is my Good Times, Good Memories with grandson.

On another thread, I think it was "Head Hurts" I made mention of comparing myself to a creature in the movie "BeetleJuice". Looking at this picture I realize I had the wrong movie. I look like Riff-Raff from the "Rocky Horror Picture Show". Do you see the resemblance?

Enjoy the day, Karin

Love our cohort....never go off of this page. YOU all are enough for me in the best way. Karin, loved the photo.

Yeah, I have meltdowns every week or so, and they're totally unexpected.  I just tell my dh it's pms, which of course it isn't anymore; but he understands.  Well, he doesn't understand, but he didn't understand the pms meltdowns either.  No matter.

Rock, I don't remember if it was this thread or some other one--probably this one, but some other page--where you mentioned how comfortable your Crocs are.  I have a pair of knock-offs.  I think they're called "Airwalks"--really comfy, and much cheaper.  Weird, though--because of the precise location of the "burns" on my feet after this last tx, I couldn't wear my Crocs/Airwalks.  They wrapped around my instep right where the sore places were.  It's odd, but I never got any sore spots on the bottom of my soles or on my hands.  I do have calluses on my heels, and I never get pedicures.  I wonder if having that thicker skin on the very bottoms of my feet kept them from developing the hand-foot syndrome.  I hope I never have to find out!

Karin, I just googled "Riff Raff" from Rocky Horror Picture Show.  I really, really hate to admit this, but ... you're right.  Not only that, but it's a good match for my scraggly (unshaved) head as well.  Bald on top, but scraggly all around the sides.

Well, not anymore, since I trimmed the remaining hair and left just an inch or so.  It still wants to stick up, especially when fresh-washed.  If my relatives see this, I know someone is going to pull out that old baby picture of me at about 10 months of age...

otter 

At the latenight, double feature, picture show, in the back row .... oh oh ho ho ho

At the latenight double feature, picture show.

I saw Rocky Horror too many times...have some wild stories but they might knock some socks off and I don't want to rock the boat. HEY...Rockthebald, love the new avatar. Donalee, thanks for passing on the words . . .

I am off from work for the next two weeks. Woo hoo! Talk to you all tomorrow. And remember, there's a light, over at the frankensteins's place...there's a light burning in the fireplace ....okay, those of you who are not riff raff fans, forgetaboutthis....time is fleeting...madness takes its toll.  Listen closely, not for very much longer....go to sleep.