Starting Chemo, November 2013 Group

QuirkyGirl

hey Wrenn! How are you doing?

Phebe38

tonilee: I have a cat that comes to my bed when I'm really sore, he seemed to know when I'm not feeling well. Look at him he looks like your cat. His name is Prince

BigT16

Phebe- I've done the MRI.  It's not fun, especially since I'm claustrophobic.   It took about a hour.

I take 30grams of L-Glutamine a day.  I do 15grames in  the morning and evening.   I use the powder and mix in a drink, usually a fruity drink.  I've read several studies on Taxol and L-glutamine and my MO stated it won't hurt.  It's an essential amino acid and will also help with constipation.

QuirkyGirl

phebe - I suggest keeping your eyes closed during the MRI and singing in your head.  That's worked well for md for every MRI I've had.

Palameda

Hey!

So for your amusement here is a before and after

The eyebrows are made in China! I've still got some brows as you see, but they're really sparse. When I pencil or powder ones on I manage to sweat them off in two hours, ugh! After a while the glue-ons itch though. Beyond remembering to reapply lipstick maybe once a day, I've never been a touch-up kind of girl. So this was yesterday, and I was among a group of acquaintances at the museum at which I volunteer: nice people, generally a mix of retired academics and white-glove types. To illustrate a point, I whipped off my wig. So funny, I'm a little on the wild side for this crowd. One woman laughed and said she'd been wondering why my hair had been undergoing such rapid change (I've got 3 wigs I alternate). Another only recognized me in my bald state.

Today wasn't such a great day, I had a lot of anger, so I decided for the first time to go out and about in my "fierce" state. It felt liberating! Most of the time I cover my head because it makes others feel more comfortable, saves them from thinking about cancer. Today, I was angry enough at what I've gone through/am going through that I figured, screw it, we are real, we are among you, face it!

Bec65

You ROCK, Pat!

QuirkyGirl

Goid for you, Pat!  Thanks for the update and photos.  I go fierce unless my head is cold and requires a hat.  I think it's healthy for our society to see that we are out there.

smrlvr

Pat, you look great. Are those stick on brows?  Where did you find them?

Amazon thanks for the tips about exercise.  I had great range of motion with that arm until recently.  I just noticed the cording this weekend.  I will ,try the exercises but i think I need to,see my PT.

BigT where do you get the L-glutamine?  Can you get it in capsule form?

I heard B5 was also good for neuropathy.  Do many of yountakemthe B6?

Palameda

Smrlvr, I bought the eyebrows from headcovers.com. They weren't cheap, and I bought them well before I even started chemo. I like to be prepared and do everything well in advance: it makes me calmer. I shouldn't have wasted the $, but at the time I was trying to cover all the bases to control my anxiety so if I saw a product, I bought it. The eyebrows do look nice, but they itch a little and it's hard to remember NOT to scratch them off!

BigT16

Smrlvr- I get the l-glutamine from health food store in powder form, because for Taxol it is recommended to take 30 grams a day.  It would be way too many capsules to swallow.

jab

Hey Ladies

You are a fierce one Pat! You looked great in both pictures. And I loved the statemwnt 'we are real, we are among you, face it!'. My covering my head makes it to easy for others to forgot that this is not any fun for me. I must get fiercer,,,,(It is -20 here right now so might have to wait....)

Thanks for the expercises Amazon - How are you doing with your latest infusion?

Tonalee have you started rads yet?

Ellen, are you done rads yet?

Wallymama/Lisa - How are you both doing?

smrlv - What kind of Kayak do you have? These are just little 10 ft ones, very light. Does yours have a rudder?

JAB

Mor

my fingers were peeling a great deal.  MO told me to try Vitamin  B-6.  That was about ten days ago.  I found it worked quickly and well.   However, today I see peeling on a couple of other fingers.  The B-6 helped with the peeling but not the numbness.  I played cards this week.  Had to ask someone else to shuffle, as I could not.  

smrlvr

Jab, our Kayaks are Cuurent Designs and Old Town. The current designs is 14 feet and old town is 9' feet.  I don't use them much, but would like to.  No rudders on either.  I need a rack for my car and they are $$$$.

Pat, it looks from the rads board that you only have 5 more to go!  Good for you!  

I am one week PFC.  Do you think it's too late to start L-glutamine or B6?  Fingertips are very numb and I think I have neuropathy in other parts of my body if that is possible.

Bec65

Hi ladies ~

Serious drama at home has kept me from posting, but I've been staying caught up on your posts.  It seems like our posts are getting less frequent -- maybe the new normal is seeping into our lives and cancer is finding its not-front-and-center place in all the other details of our days?

I have my 5th radiation today.  My RO gave me Aquaphor and Miaderm samples, so that's what I plan to use as my skin breaks down.  

I had my port removed on Monday.  They opened up the placement scar and used that.  Right now it looks like I have a weird big air bubble under my skin; hopefully that subsides soon.  I should have a note placed in my medical  record that I should be fully knocked out for all procedures -- whenever I have "twilight" anesthesia, I talk incessantly and tell everyone my life's story and problems.  Poor things.  At least you girls got the day off from hearing me whine!

Speaking of whining, I called PT to ask if I have to wear that godawful compression sleeve when I go walking.  Seriously, it takes two people and rubber gloves to get it on me, and I have a little skinny arm.  Answer -- if an activity elevates my heart rate, wear it.  Geez.  

I've decided I need help in dealing with everything that's going on, so I have an appointment with my cancer center's social worker tomorrow.  I don't have the take-charge attitude like I used to have about everything going on.  I feel like bad news is lurking around every corner, and I'm crying at the drop of a hat.  I know, all normal, but I don't want to feel this way, so maybe they can help.  

Off to get zapped.....

Amazonwarrior

I had my 5/6 infusion yesterday, so I only have one more Taxotere to go!

I told my MO that the way I was looking at things was that, if I didn't count the chemo yesterday I only had one more left. I guess that's how I had to handle it mentally and the trickery of my mind sure seem to work for me.

I had a pretty restless night, as SE were creeping up on me. Mainly water retention in my face, abdomen and legs. My legs feel like they weigh a ton each! I also had severe hot flashes and cold sweats, hence the restlessness. My body overall felt weird and couldn't figure out what it wants. I was feeling hot one minute, then freezing and shivering cold the next. 

I am still on Dexamethasone, so my energy is still fairly high, but as soon as the steroids wear off I will crash and go into a black hole with severe pain for a number of days to come. Well, something to look forward to. 

Pat: I love the before and after pics as well as your attitude to show the world that we do exist and that our problems and challenges are also other peoples' too.

Jab: It's been brutally cold over here too, so  any bald venturing is on hold for now. I, however, have noticed some new growth on my scalp so  maybe by the time spring comes, I'll have something on my head that will be visible to the naked eye. Right now I almost need a magnifying glass to see the tiny hair coming back.

BigT/smrlvr: I read a study that shows how L- glutamine effects neuropathy. The reduction was significant: women who didn't take it had 40% chance of developing it versus only 8 % who did. The recommended dose was 30g per day taken after 24h of chemo for 4 days. 

http://www.ncbi.nlm.nih.gov/m/pubmed/11350883/

I have been taking supplements of vitamin B6, B1 50 mg per day as well as l- Glutamine 500 mg per day. The dose for L- Glutamine was given to me be a pharmacist at the cancer centre and it's a VERY conservative dose, because L- Glutamine is apparently also a mild  anti- oxidant. I think, however that this time round I am going to boost up my dosage slightly and see what happens. 

I am trying to eat foods that are high in L- Glutamine: cheese, cottage cheese, cabbage, spinach, beans, eggs, fish, turkey etc..

I had my fingers and toes iced yesterday during the infusion, so I am optimistic that my nails may hold up. Will see and let you know. 

Bec: I also have noticed that the frequency of the posts here is decreasing which I find a bit sad because I really like reading what other people are going through, it makes me feel connected and yes supported in this tough journey. 

So ladies, keep on posting! I love it when we can share our stories!

 

NorthwindsGS

Taxol number seven over.

Chemo was non eventful however a swollen Lypmh node on neck was found so waiting on a ultra sound as they are thinking a blood clot.  And then the really good news............Oncologist wants to do a Bone Scan since by upper back pain is worse and there all the time.   So NOT what I need to deal with now.  Hubby has major surgery tomorrow for tumors inside his spine.  I need all this to stop so I can jump off the wagon wheel of fun. ......

lisa137

Almost 3 weeks past my second TC, I'm doing so well (except for the beginnings of a UTI which I'm taking antibiotics for--and which has more to do with hubby and sex than with chemo I suspect heh) that if it weren't for the fact that I DID have several days where I had to take hydrocodone for pain, I'd be tempted to call up my cancer center and ask them if they are SURE they remembered to actually infuse me with chemo. The bottoms of my feet are a little tender--feel like I walked on hot pavement-- but my energy level is pretty darned good all things considered, and I feel pretty good.

Of course, I say that with two more Taxotere treatments to go, so I might be jinxing myself, lol... I go to get chemo'd again on Monday, so I might be singing the blues after that and whining and complaining as if I might just keel over and DIE from the misery at any moment...and that, too, shall pass.

This time it will be JUST taxotere, since my onc chose a weird combination for me --- 4 A/C's, 2 T/C's, and two plain taxoteres. Not sure why he wanted a total of 6 cytoxan and 4 of everything else, but the guy is a rock star and a genius so I'm down with it. I love feeling like I can totally trust my doctor. I really do. He calls me "girly" and whacks me on the head with the folder my medical info is in as a greeting and I think he's awesome. lol.

I think one difference I've noticed with my experience with all this chemo and what most everyone else seems to be going through is that I have really had no trouble sleeping through any of this. In the very beginning--after the first A/C I would tend to wake up at 4 or 5 in the morning and not be able to get back to sleep until sometime later in the morning, but honestly I've probably averaged 10-14 hours of sleep per day all through chemo. Maybe that's made a difference; just seems like other than bouts with constipation, major heartburn, and that one awful week of high fevers and severe chills, this has all been less horrible than I imagined it would be. Of course, I'm lucky in that I have no kids and my husband (and usually the dogs) are pleased to let me sleep whatever hours I want to sleep, whether that fits into a normal daily schedule or not. That's actually always been true--before chemo, even since I was a little kid, I "suffered" from "Delayed Sleep Phase Syndrome" which is a form of Circadian Rhythm Disorder, and "normal" sleep hours for me were that I'd fall asleep between 2 and 4 in the morning and sleep until somewhere between 10 a.m. and Noon. Chemo has me going to sleep between midnight and 1 most nights and getting up (but not always STAYING up) when hubby leaves for work a little before 7. He joked the other day that chemo has turned me into a "morning person" and I was like "yeah, don't count on THAT."  Hehe.  But in any case, through the whole chemo experience, whereas I used to have problems going to sleep "off schedule," now I can think "oh, a nap would be nice," and be fast asleep within 5 minutes. At ANY time of the day.

I got up this morning after hubby left for work at 7 and put some chicken and rice into the crock pot, and fell back asleep around 8:30 or 9.... Good thing my dogs woke me up just before noon (lol) because my chicken and rice was quite done and would certainly have burnt to a crisp if I'd left it til my husband gets home at 5 or so. Guess I'll just keep it on "warm" til then? Hmm. I had some for lunch: A little bland compared to what I normally cook, but sticking to bland'ish foods is what I do these days, to fend off indigestion and mouth sores. Tell you what though, I am looking SO forward to going to my favorite Thai restaurant when all this is over!  And sushi. I can hardly wait!

Pat, I've hit that "anger" stage a few times lately too. I haven't whipped off my hat to express it or anything; mostly just sat around and glowered and expressed to my husband exactly what it is that I'm angry ABOUT, which helps, since he understands remarkably well for someone who isn't going through it. Then again, in a way he IS going through it, since we're so in synch with each other. He called me one day and said he had body aches "Like I'm coming down with the flu or something," and I said well, I've been taking hydrocodone today for body aches and he was all "Well that explain it, then." He took ibuprofen while I took hydrocodone, and his body aches went away when mine did. He commented the other night that his big toe hurt, and I was like yeah, mine too, lol....Through all of this he's gotten indigestion with me, needed extra sleep with me, gotten depressed with me, the whole nine yards really, just not as severe. So maybe he DOES get it, to an extent. But anyway---the anger. I guess I'm glad I'm getting to that stage, because I reckon---or I'm told--that it's part of the whole "acceptance" process and integral and important to "moving on." And I am indeed looking forward to moving on. I mistook my anger for depression and/or anxiety at first, and didn't express it as anger, but now that I realize what it is that I'm really feeling: "This is NOT fair!! This sucks! How DARE life do this to me! DAMMIT I was happy and life was perfect! WTF?!!!" and can express it as such, I DO feel better and "anger" has cooled down to an occasional sarcastic resentment. Feels much better than something that can be mistaken for depression or anxiety. Much better.

And ya know, we have a RIGHT to be angry, even if there's no PERSON at which to direct that anger, and expressing it -- at the wall, or by writing it down, or confiding it to someone, DOES help.

On the other hand, I've thought a lot lately about my father-in-law, who is an awesome wonderful incredible man. Because of his religion, he eats probably the most healthy diet of anyone I know, and has for most of his life -- at least, the only meats he eats are white meat turkey, chicken, and fish. No beef, no pork. But he has (apparently) hereditary high cholesterol, and a few years ago he had a completely unexpected heart attack. Then a year later he had another one. So the thought HAS to cross his mind that theoretically he could have yet another one at pretty much any time, and at any time one could kill him. At least with this cancer, if it DOES come back it won't come back all of a sudden and kill me right then and there. One of these days I'm going to catch a quiet moment with my father-in-law (meaning, when my MIL isn't there to get upset about the question,) and ask him how he copes with that fear. I'd never really thought about it until I got cancer but since then, I've thought about him and how he dealt with it a LOT. What I DO know is that he hasn't slowed down much, if at all. That, in and of itself, might be how he deals with it. By living. If so, he's setting a good example for me, and I intend to follow it. That's what I'm already doing, really, I guess--even though I still have two more chemo treatments to go, I'm getting myself slowly out of chemo-mode and into recovery-mode, doing more around the house, going out with hubby more, and generally *trying* to not make everything all about me-me-me quite so much--meaning hubby is getting his foot rubs at night again, so he's a happy hubby lol, and it feels GREAT to finally be doing stuff for HIM again, after months of him doing so much for ME. It's good to feel useful again!

Didn't mean to write a book...this post is more like a blog entry than a post, just me thinking out loud.   I hope all of you have a great day and that all your SE's magically disappear, at least for a little while, and you can laugh and enjoy life. Actually, laugh and enjoy life anyway, if only for a little while. It helps so much! Love and hugs to all of you.

BTW, I watched a movie the other day--not a new movie, but it happened to be on Showtime or some such. It's called "The Prizewinner of Defiance, Ohio," and I loved it. So if you haven't seen it, check it out. No one gets cancer in it, and no one dies til they are old, so it's "safe." Very touching, a true story about a VERY brave woman, and quite touching.

NorthwindsGS

Lisa,

I just finished reading the book.  " The Prizewinner of Defiance, Ohio.  Loved the book.  Was not aware they made a movie from it.   Will have to watch for it and rent it.  I enjoyed the comedy and simple way of  life back then.

lisa137

Yeah, I think I'm going to get the book to read; I liked the story enough that it will probably be one of those books I go back and re-read time and again. Maybe not as many times as I've read Helen Hooven Santmyer's "...And Ladies of the Club," though -- seems like every time I finish that one I restart it within a year. I almost have it memorized at this point, no kidding.

NorthwindsGS

And the day just gets better. 

Upon returning home my phone rang.  Told myself to just let it go to voicemail,  however I answered and it was my dermatologist.   Last Thursday she had taken a small mole off my side as it was changing colors.  Years ago I had a Basal Cell skin cancer removed.  No trouble since.  I did spend much of my youth as a sun worshiper.   When we lived in Orlando, Florida I was always outside.  Worked in Ocala  at a couple of the larger horse stables exercising Thoroughbreds  on the track, spent all my days and nights outside.   When my parents returned to the North I rebelled and ran away. Hiding in a stable of a friends in Claremont.  Never wanted to leave the south.  It was were I belonged.  Anyways, upon returning to Wisconsin I worked in a tanning saloon as a teenager that my mom managed.  I was brown year round till my mid thirties.  Now I am afraid I am going to pay for all the wild years and no sunscreen.  

The dermatologist is sending my tissue sample put to confirm what she found.  That doesn't sound good.  When she removed my Basal Cell she told me the results right away.

Does anyone know if going through Chemo could cause a false reading in the tissue of my mole she sent in?  Grasping at straws here but hey, ya never know.........

QuirkyGirl

I found that chemo killed unrelated things so I'd be encouraged about that mile. Chemo killed the sebborheic keratosis on my face as well as the strep infection I'd had in one tonsil since high school!  It also got rid of my boss' lupus.

ellenkc

Quirky -- I have to giggle. Your chemo got rid of your boss's lupus? Wow, that's some powerful chemo!

And someone asked -- yes, I did finish radiation on Monday. That's it for me, no further treatments. A little bit red from radiation and a little bit of fatigue, but that is all. I do find that emotional stuff is hitting now that I am not busy with treatments.

Ellen

QuirkyGirl

chemo brain alert!  It wasn't lupus, it was Lyme!!!

Phebe38

I just want to vent. For some reason today I cry a lot. I went to see a councillor. I told her what happened when I was admitted at the hospital that I just about died. My white cells went so low as 0.7 and temperature was 39.8. At that time I was so peaceful. No pain just a restful sleep. They kept taking my blood work. They didn't tell me all this till the next day. My temp return to normal and I got discharge. I notice everyone who enter the room had masks. So I ask the doctor everything and he told me I just about died and there was nothing to prevent or help me because of low white cells. The mistake was that no one told me that I had 2 refills of antibiotics of each infusion. One refill each infusion. Because I got so many pills I didn't bother looking at the bottle. So with this last infusion I made sure they gave me antibiotics and I also got a needle on my stomach. The oncologist told me to get it done so I got that done on Thursday 3 days after infusion this is to prevent white cells to go lower. He said I would  get bone pain but it's ok better than dying. He gave me heck for not taking those antibiotics. He said "you could've died". That is scary so today I was so emotional from all this chemo. So tomorrow I request to get blood work done and find out how my blood is. Do you think it's ok for me to be curious and see a doctor what my blood count is? I also read all of your posts. I'm going to get multivitamins and B-6, and order that L-Glutamine to help me. It seems like when we're done chemo we're left on our own to survive. I did ask my oncologist nurse what kind of vitamins to get. She suggested multivitamins. My mind is kinda foggy. My two thumbs are quite swollen those were not iced during infusion just a little. My body is very sensitive so when I have a bath I have to be careful just to pat it. Otherwise I end up having a rash. Tomorrow I'm going to write what I need to buy. Tha is from all your infor. I will continue to come and post. 

lisa137

Phebe, of course it's okay for you to ask the doctors what your blood count is. You have a right to know ALL the information about your treatment and care!  With my cancer center, we actually have a web page we can log into and actually see all our information including tests, treatments, prescriptions, etc. 

I have those days when I cry a lot too though; honestly I suspect we all do, or those of us who don't, at least have days when we'd LIKE to cry a lot.

It also sounds like you need what I have: Someone who will go with you and listen to what the doctors say and check your prescriptions and make sure you are actually taking what you are supposed to be taking. Before I was diagnosed I was pretty sharp...okay, maybe a little absent minded, but I was perfectly capable of taking care of myself. Since chemo started though, sometimes I will actually sit and wonder if I actually TOOK a particular pill or if I only noted that it was time to take it and THOUGHT about taking it. So my husband double checks lol. He also goes with me to all my doctor's appointments and then tells me later what was actually said because half the time I have no clue.

My fun example of chemo-brain this week: Yesterday I called my docs to let them know that I had the beginnings of a urinary tract infection--no fever, but I've had enough of them over the years to know what the beginning feels like--so I could see if they wanted to go ahead and "call me in" a prescription to the pharmacy for some antibiotics, or wait and see if it truly manifested into an infection. 

So I called and of course was speaking to a recording, leaving a message for my doctor's assistant, and when it got to the point when I was to leave our phone number, I got all deer-in-headlights and for some reason left my husband's cell phone number. Luckily, he was at home at the time. Unluckily, he gets almost no signal on his cellphone in our house, so when they called back, all they could do was leave a message for me to call them again.

SO...I called them again, left another message, and waited. After what seemed like an unusually long response time, they finally called back, and the physician's assistant said "I tried and tried that number you left, but it doesn't even ring, it's like the line just goes dead." I pondered and asked "What number are you calling now?" She told me, and the number she gave me DID sound pretty familiar.  That's because it's actually our phone number, which we've had for about 8 or 9 months now. I'd left them our OLD phone number and completely blanked out our "new" one, which I've never had a problem remembering before. I told my husband "Okay you just can't trust me to get ANYTHING right anymore." lol. I felt like an idiot. Obviously I'm going to have to put a sticky note on my computer with our own phone number on it.

It's funny, but at the same time....geez, I wonder if I'm ALWAYS gonna be this scatterbrained!

At least they did take my word for it about the UTI and my husband picked up my prescription for the antibiotics a little while later. So I guess all's well that ends well. And my mom told me she dropped one of her cordless phones into her dish water yesterday so that made me feel a little bit better. lol.

Phebe38

my daughter was the one who monitor my pills but for some reason she didn't read the prescription where it says 2 refills. She helped me a lot during my chemo. Right now I'm so fuzzy what I ate. Some food taste like rubber. I like homemade soups and Ensure. All through my chemo I never really lost my taste buds. I have lost some of eyebrows and all of my eyelashes but I never lost all of my hair. It almost look like when a newborn baby's hair lol. Should I dare show you? My sores on my mouth is getting better. I do have a rash in between my stomach and thighs. I'm seeing a wound specialist tomorrow. As long as I get the stuff she recommends my daughter will do the dressing after I soak with sea salt in a tub. I told her that's the best time of the day when I get to soak in the tub. I still want to go back and check what I can take for vitamins. I know that my oncologist nurse said multivitamins. My bone pains are not as bad.  I'm not taking anything at the moments. Hope and pray all is well for each of you.

NorthwindsGS

Yeah Ellen!  So happy for you and I can't wait to catch up to you!

Are you doing anything to celebrate?

Congratulations!

Pam

jab

Ok, at the time, this was NOT funny, but when relating it to a friend today, it was very funny ( I hope that happens with more other cancer experiences...) so I'm going to relate it to you folks. Hopefully you will appreciate it, but I will need to set the scene a bit first.

From my last Taxotere infusion it seems that my whole body has decided to rebel. I am tired (nothing new), have an ongoing nose bleed (that is new) a very painful rash on my hands (new), nails on hands and feet coming off (new), tearing all the time so it looks like I'm crying (not new but worse), and the very painful joints, bloated stomach, swollen legs and ankles (not new). I'm sure you can all relate. Anyway, being type A and a major control freak, the most recent infusion as given me a lot of downtime allowing too much time to 'plan'. Mostly, I have been planning how I am going to rehab my way to health, which, as we all know, has many unknowns, BUT, I am hell-bent on at least doing some planning (and excel documents with Gant charts with timings and action plans...etc, etc, you get the idea). Anyway, one of my actions (way to much time on my hands....) was to start swimming ASAP. So in my debilitated state, with my nose dripping blood and my eyes flowing tears, I set out to find some water proof boobs.

I had heard from our cancer coordinator that these boobs could be found at the drug store a few miles away or could be ordered. Of course, being type A, I had to have them NOW. Just maybe I'd wake up tomorrow and want to go swimming (NOT LIKELY), so off to the drug store I go. I knew in the back of my mind this was a very bad idea, as I had been out of the house twice in a week (one of the the other times was also part of the rehab plan, the kayaks) and I was feeling pretty crappy. Anyway, I went to the helpful lady at the health center section of the drug store. I asked, ' I understand you have waterproof boobs here' (what I meant to say vs. what I did say somehow were not the same...). She looked at me with confusion and a bit of fear and said - 'Oh this isn't my department, I'll get the manager'. I should have left then, but completely out of it and very determined, I waited for the manager who arrived shortly.  She brought me into a little room where they kept the boobs in banks of drawers. After pulling most of them out and putting them on a table near me, she final announced that she didn't have the waterproof ones and would have to order them in. By this time, my eyes were streaming tears and my nose was steaming blood, and I was surrounded by boobs and I had run out of Kleenex. She asked if I was OK and I said, 'No, its the usual these days, can I get a tissue?'.

Anyway, I left boobless in more ways than one, thinking about  how I use to be normal and a contributing member of society. I don't think I'm sad or angry, I'm resigned. I'm not sure if thats better or worse.

JAB

smrlvr

Northwinds and Pat, one more chemo for you, hey!

North, I hope your husbands surgery goes well today and that your skin biopsy has good results.  I have been lax in going to the dermatologist and I spend a lot of time in the sun.  I know I should go, but I am so sick of doctored at this point.  I also need a colonoscopy, but can't bring myself to do that either.  It was on my agenda for last fall, but fate had other plans for me then.

Ellen, congratulations on being done with everything.  Please stay with us to let us know how you are doing. 

Speaking of UTIs, my daughter who said she had kidney stones actually had a really bad UTI.

So, my husband wanted an excuse to get out of the single digit weather we have had, and he took me on a trip to Florida to celebrate my finishing chemo.  We could only go this week (here now) because kiddies are coming home next week, as well as rad simulation/tattoo, port removal, etc.  it will be all about cancer after this so this week was our only chance to get away for a few days.

It has been good to get away from home, where I have been cooped up for the past 7 months.  I actually have slept better than ever.  Deeper and longer sleep. Go figure.  MO said no sun, because it interacts with the chemo drugs, so I went to the beach fully covered, hats, etc.  I looked like an old lady completely covered, but I didn't care because it was warm.  Also, my chest is all decorated with the lovely sharpie markings from my radiation planning session.  I brought a book, the first book I have read in 7 months that was not about cancer. So while I am at the beach trying to relax, Daughter #2 calls crying to say she was still in severe pain from her UTI and was once again in the ER and had been waiting for 3 hours.  What can I do from Florida except worry?  She was seen 2 hours later and it seems she is one of a few people for whom Bactrim doesn't work and they gave her cipro.  Hopefully that will work, or I will be driving to New Hampshire tomorrow.

Jab, I brought some water foobs down here with me.  You can find these in the TLC catalog, but I found them for half the price on the internet.  Anyway, they are made with these tiny beads that make them dry quickly. Problem is that the beads settle, so they don't look real.  Also, I didn't have a mastectomy suit.  I took a regular suit and sewed in pockets myself.  Didn't offer too much support for these things so I may have to get a mastectomy suit for this summer.  They are very expensive; more than I would normally pay for a suit.

I still have the bloody nose and no feeling in my fingers or toes.  And very tired.  I hope I can get it together before I go back to work.  I want to go back in the next few weeks. I am just afraid I will go to work, radiation and then collapse.  Also not looking forward to dealing with people I haven't seen since before DX, which is just about everyone, except a few who have shown they are great friends.

smrlvr

Phebe, I forgot to mention to you that I had terrible chemo brain. You should bring someone with you to your doctor visits.  And write things down.  I would ask the doctor a question and then ask the same thing again 5 minutes later.   My husband was there to tell me that, and he always remembered things that I forgot.  Also,you  have a right to all your lab work.  I always ask for a hard copy, but my MO has an online system where you can access them and print it out yourself.  Don't be afraid to advocate for yourself and ask questions!