Starting Chemo May 2008

*groan* I think i have developed a uti..... supposed to have tx tomorrow. Called the onc office and they said to come with a full bladder to pee in a cup. If it ain't one thing it's something else.

Somewhere, buried in this stack of forums and posts on my computer desktop, is a post that tells how many points we get if a stranger gasps when seeing us bald; more points are awarded if it is a friend who gasps; people who faint dead out on the floor are worth even more; etc.

Rock, was that yours?  I can't find it, and I wanted to ask if we get any points just for catching someone staring at us.  As my dh and I were on the road today, headed for my DEXA scan and then to our boat, I lost count how many people were slyly staring at my bald head, even though it was wearing a non-denominational ball cap.  Some of them smiled quickly and looked away, or smiled and said a quick "Hello", when I glanced at them.  Some just kept staring, even in the university medical clinic lobby.  You'd think they would be used to seeing people with no hair or one foot missing or a jawbone removed etc. etc. around there.

I think catching someone staring is worth 1 point.  If they're not embarrassed enough to look away, it's worth 2 points.  I have not had anyone gasp yet, but my daughter-in-law and my mother haven't seen me yet.  My mother-in-law is cool--she won't flinch.  She might hug me, but then she does that when we're coming and going anyway.

We are sleeping on our boat tonight.  It was on the way between the DEXA scan and where my in-laws live.  Well, sort of on the way--I think we saved 15 minutes of driving time out of the 13-hour drive, or something.  Sleeping on the boat is way cheaper than a motel, and even more comfortable.

otter

I just lost a long post I typed.  Don't have time or will to re-type.

Otter: Short version:  I think being a bald woman in public is akin to a same sex couple holding hands in public.  There is nothing wrong with it. Sure "they" could chooses not to hold hands; we could choose to wear a wig. Indicator of our level of social acceptance.  [after a paragraph of typing I conclude: Must be far, far harder to be gay and wanting to hold hands.]  Safe and happy travels. If you find yourself in Kansas on Hway 24 let me know!

Roxi:  excuse my memory lapse if you have already told me this, but are you BRCA+? (I am.) I am assuming you are otherwise it would make more sense for you to be tested before your daughters are. (If you're pos for the mutation- 50/50 chance each daughter is. If you're neg, there is no chance a daughter inherited the gene from you.) If you have any questions about the BRCA stuff, feel free to PM me.  But if you've already been through the counseling, you prob already know what I know!)  You have my complete sympathy with regard to your sisters' scare. I am going through that now with my older sister who is appearing to be  more cavalier than I feel she should be.  On the other hand, my younger sister is being tested next week. I do not think it is right for me to push either of them to be tested for the mutation, but I DO wish my older sister was being more aggressive in getting follow up for these cysts.  Again, though, the thing I most want you to know is that I feel for you. When I heard about K's scare, it was like a punch to the gut. Similarly, thinking about my sisters having the mutation is 1000 times harder than knowing I have it.  Honest. 

Sable -- UTI. Bleah. Careful with those @(#$& antibiotics as I often find they throw my system out of whack for a month as the good bacteria gets destroyed along with the bad.

Mominaz - -vent wherever you feel most comfortable, sister. Here works!

Wishing good things to all of you. You are all in my thoughts, and I mean that.

Oddest sensation..... was laying on the bed doing my node drainage and my kitty comes up and gives me a bump on the nose with hers.... then proceeds to walk to the top of my head and licks me....... urk!

Oh, ladies (and Wayne, where are you??), it has taken me hours to try to catch up, plus I'm trying to do 2 weeks worth of laundry (yes, my husband would do it but I like to think I'm not completely worthless).

Randie, I kept hoping someone would get to yeast.  When on ACT I got that and didn't think it was yeast because it didn't itch.  I also got a dreadful Candida esophagitis.  Be sure they keep up with it; the onc gave me 7 days of Difllucan but the gastroenterologist finally sent me through 3 rounds of 20 days and I think it was a higher dose than the onc had prescribed.  It was VERY painful and "bleedy" (the vaginal, not the esophagitis).

To those with constipada, my onc tells me to take Dulcolax or Senekot (I think?) during the first days after treatment....then I switch to Immodium when the diahrrea hits...go figure. 

I didn't know where we were going but as luck would have it therre was a magazine on Kauai in the waiting room Monday (tx was delayed due to holiday), so that's where I went...they do have lovely waterfalls;  now it turns out my husband wants to go to a meeting on Kauai in October.  Maybe I'll have to find a magazine on Ireland.  But I don't have a passport and my driver's license already has a bald photo on it; do I want one on a passport????

Roxi, prayers for your sisters.  My sister also had to have a biopsy a few months ago and it was tense.  Funny how some people get hypervigilant and some go into denial.  Hers was ok (calcifications, which of course need to be watched).  I haven't gotten my BRAC results back but expect them to be negative.

Dry eye and ringing in the ears...still have it from my first bout with chemo.  The opth recommended TheraTears individual packs of lubricant eye drops four times a day for severe.  Also TheraTears liquid gel before bed.  Contrary to what you'd think, he said dry eye syndrome causes that weepiness and crud in the eye...got a whole pamphlet to prove it!   Don't have anything to fix this d**n tinnitus.

Rock, I hope the HF will continue to improve.  When I first read Sue's post I thought she meant "edema-licious" but then I saw she meant "ede-MALICIOUS".  I didn't get that se on Taxotere but it sounds awful.  The next chemo I'm supposed to go on has it as one of the primary ses so I will be calling on you because I won't be able to find the pages it's on...

My memory is so short I can't figure out what else I was going to say!

Oh, Sue, I had photoshopped a foob onto a fedora but I couldn't figure out how to get it up here.  and i used to be so good with the computer.  Also, why doesn't the board tell us where we live any more????  I might forget!  Sue, is that north of DFW?  (I can't go back and look; my train of thought will leave the station without me).  I can be there in 2 1/2 hours if so; should I bring Blue Bell Ice Cream? 

To everyone I didn't address directly; I love you all.  I've had a bad couple of weeks so I just haven't felt up to posting.  Loved it all...the songs, the wines (oh, sorry, whines), funny stories, going to Disney in crocs...I know you all are saving my life!

love,

dana

Holy DInah guys I go away for a few days - had to put up some drywall in my garage (kind of made my hand more swollew - but it can suck it up!)  put up a new light fixture outside the garage - and will be (helping) build a fence this weekend. 

 Wow Rock - The cocktail I am on doesn't have the feet and hand painful side effect - it makes having a 7 pound elephant seem like nothing!

Randie - when I had my sore -not sure if from same thing - I called the clinic and told them I had been slathering it with polysporin - and it wasn't getting better. - She said - kind of snarkily (word) that maybe rather than slathering it I should let it dry out.  SO I have one of those gypsy skirts I would commando in - my 10 year old son would always comment on why I was walking  funny!  Like I was going to tell him!  Sounds kinky but a fan works - but you kind of have to be in privacy mode!  Mine finally gone as of yesterday - 2 weeks of cowboying I am sure walking like that builds new muscles!

Can you send zucchini bread to Alberta - I hate to cook but love to eat.

One silly question - I don't know how to get my picture up - apparently you all do - quick lesson please?!

As for my swollen arm - Still happenting! I posted a new thread hiping someone can help - it really kind of hurts now if anyone touches it! - as the conventional people can't fix me even though they created the problem - have booked an appmnt with an accupuncture dr!

Rock you are bad!  Breast fits in there just great!!!  needed the laugh thanks!

Boy wish this had spell check - takes me as long to fix my mistakes as it does to type!  Right eye is blurry today so can't see that great! 

Oh well - will be a stronger person after all this and will have no problem telling people that crab all the time to suck it up buttercup!

Hi everyone

Gracie - how wonderful that you got to spend some time with your Granddaughter - those good times are so important.

Otter & Rock - love the idea about the point system   But I am still a wimp and won't go out without my wig.  I did take it off and drive home from work bald today  

Mominez- I love listening (reading) the mom vents - it makes me feel so much better about my mom who is totally wacko

Ewesterman - so sorry about the shingles - as if you didn't have enough to deal with. 

Roxi - sorry about your sisters - confused about if you had the BRCA test or not.  Most females in my family have been hit with BC.  My grandmother of course was before testing was available, my aunt tested positive  My mother who had BC refused to get tested - didn't see any value in it (wacko like I said - no value?  what about me am I of no value?) I was tested and was convinced I would be positive but in the end I was negative.  On one hand you would think that's good but negative or positive I have BC.  The person who did my testing said even though I am negative my family has some gene that hasn't been detected because everyone gets it.  So, regardless of my test results or your test results our daughters have to be very careful.  They have to start getting checked early, frequently, and regularly.  Hopefully prevention will improve and our daughters will be spared this experience.

Geez Louize!  Eddie, this is so totally RIDICULOUS!!!  I am so so so sorry.  I just don't know what else to say.  I am flabbergasted at the hands so many have been dealt.  It just isn't fair (and I really don't say that often)...but it just isn't.  I'm glad that you ARE at least getting sleep.  I am with you on the narcotics.  I'm one who doesn't even care for the Tylenol's and Advils of the world.  Any idea on how long this takes to clear up?

~Adrienne

Ok I tried to upload my avatar - says not in proper format - what is the proper format?

Sue - Red Deer Ab

They are spreading. I am done cussing, but it was really fun. I am so bummed out right now. I think my only salvation is watching movies. I am too wiped to read (though I will try). I never watch enough movies anyway and in the last day I watched Drillbit Taylor (for my son); Under the Same Moon (great weeper an fabulously shot) and Dan in Real Life (very good). TOnight I will watch an old favorite, Monsoon Wedding. We have good food in the fridge. My tastebuds seem to be on today. The shingles burn like nobody's business. My tummy hurts probably from the anti-viral anti-shingles drugs. My doctor called it siding -- not shingles. My eleven-year-old, who was with me in the doc's office- was mad the doc did that because he was so bummed for me that he started hugging the doc when he said it was siding rather than shingles. I have vicadon and oxy whatever the hell it's called. I could sell all these pills on the streets of Seattle and donate the money to Susan Komen Foundation. I don't want to take the narcotics either and am also a lightweight in the world of drugs. I did take some kind of NSAID today which made my joints feel less achy. I am, officially, a mess. However, it's nice to check in with you all and know you are there. For those stepping up to the bar (chemo bar) this week, I wish you well. For those who were doing it next week (and I was one of them, but now I am not) know that I saw many of you had setbacks from time to time and, though I was sad about them and I wanted them to be gone, I do take some comfort knowing this is my bump on the road for now and you overcame yours and I will overcome my blasted shingles as well.

Thinking of all of you (I swear) but a bit ragged myself so will keep this short:

Randie -- I am so happy you are getting some relief from the burning. 

Eddie, I relate as much as a person without shingles can relate to everything you said (i.e., Can't exercise. Don't want to add more drugs to the mix. Shooting to have things not get worse and then hopefully, to get better. Laid up and housebound.  Joint pain.  Another d**ned thing. Sue's "dog ass tired" is a very accurate descrip.  ).  You'd think for someone who claims to "relate" I could offer something useful. 

All I got is that you are absolutely correct: It will NOT always be like this.  

This morning was a beautiful, cool, non-humid morning in NYC. I called Pam and we walked to the farmer's market.  I bought some potatoes and some (more) zucchini bread. It was a beautiful morning, made more beautiful by the fact that I was up, on my feet, walking.  Felt like a gift.

Sue and Eddie, you both also seem like the type of people who don't need shingles, queasiness, and fatigue to make you appreciate the good things life serves up on a daily basis (e.g., peaches, a dip in a lake, the view from a kitchen window, the wonderful diversity of a city).   Those things will still be there when you feel better; those things are still here.

Roxi, SuePeet, Sue, Eddie, Randie, EyesOTex, I am sorry you don't feel well. I wish I could be there with a cool cloth, or make your bed up with nice crisp sheets, or bring you a glass of lemonade on the porch, or run you a bath or something.  I suspect we all feel that way. 

Take good care.

Just checking in from the Fairfield Inn & Suites in Russelville, Arkansas (on the road to Oklahoma)...

There is enough sucky news on this thread to give some serious competition to Traci's moan and groan thread (on the Moving Beyond Cancer topic).  Eddie, shingles?  Nooooo!!!  And you have to postpone chemo because of it???  That really sucks.  Roxi, remember that even if you were negative for a BRCA mutation, your children could still have a mutation inherited through their father's side of the family.  (That sucks, too.)  I don't have the proper words to tell you how awfully scary the news is about your sisters.

Randie, I still haven't figured out where on these boards I first saw the points system for reactions to bald heads.  I ran up a lot of points today during our pit stops--but that was with a cap on!  And, what's with the sweat that rolls off my head these days?   Rock, yes, I agree that points should be awarded for launching cats and cowering Airedales. 

SuePeet, the pic for your avatar might need to be in jpeg format.  Also, the file size (pic size) has a limit--I think it says what the limit is in the information/help section of the BCO boards.  I don't remember, and if I go back there, I'll lose my post. 

This one's for Sueper13.  Sue, you waited too long to buy my dh's former plane for your dh.  The broker who bought the plane from my dh and his airplane partner last summer had the engine overhauled, a new prop installed, and gave the plane a nice, new paint job.  He's had it listed for sale since then, and this past week he had a ferry pilot fly it to Arkansas for a pre-sale inspection.  The ferry pilot had an in-flight emergency and crash-landed the plane in a field a few miles short of the destination airport.  The pilot is OK, but the plane apparently was totalled.  I saw some on-line news articles about it, and some pics and video from an Arkansas TV station.  It makes me sick.  We flew in that plane dozens of times, and now it's been wrecked.  At least nobody was seriously hurt, and at least we weren't in the plane (and didn't own the plane anymore).

Rock, I loved that last paragraph of your post, too.  I think you might need someone to bring  you lemonade and a cool cloth, too.  Wow, you're right in your comparison with the same-sex couple holding hands.  We can choose not to wear a wig or cap, and go bald-bald--but in doing that, we are making other people uncomfortable and they may react to that discomfort.  Did I read somewhere that someone expects you to get lots of writing done this fall, when you're on medical leave?  Do you need to remind that person there is a difference between a medical leave of absence, and a "professional improvement leave" (a.k.a., sabbatical)?

Oops--gotta go.  I have to do more of the driving tomorrow, so I need some sleep.  Hi to all I haven't mentioned, and hugs to everybody.

otter 

Hi Ladies,

Kristy and Mominaz how did your trip go yesterday ? 

Trip to Ireland yeaterday was uneventful but long. Had no problems with first taxotere, i tried the ice gloves so we will see if that helps with numbness in the hands, time will tell. It did make it interesting when i was trying to turn the pages of my book as it was like wearing really heavy oven mitts.

Got there around 8:30 didn't get the drug until 12:30. My counts were low in the blood test the day before so they were contemplating delaying , so they did another blood test and it was up just enough to carry on , YEY!. But then had to wait for check over from onc and then it took forvever for the pharmacy to get the drug up to us....oh well had good company in the room.  There was a newbie in the chair next to me getting her chemo training, real sweat lady in her 70's and you could tell she was overwhelmed with the info. Just brought back how i felt when i was going through that not to long ago. 

Feeling good today , the nurse said if i was to get the muscle aches it would probably crop up around day three, so will stock up on tylenol. I am heading out to the cabin for the weekend as the weather is supposed to be so nice so will put my feet up and relax.

Hope everyone has a good weekend,  Eddie sorry to hear about you having to deal with the shingles , as if there isn't enough to deal with !!

Take care all !  

Hi MsKarin,,

They had them in the onc department in our hospital. I live in a smallish city... in Nelson, British Columbia, but they seem to be up to date with everything out there.  So I'm very lucky in that respect. Sounds like you got pretty crafty with your invention, glad it worked for you, I figured it couldn't do me any harm, so went with it!

Have a good day