Starting Chemo May 2008
Comments
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Fly by . . . reading good news about Eddie and Roxi! Love that.
My eyes popped when I read 40 miles a week. I was thrilled that I can now do 5 without walking and I am still considering (a slow) marathon in January.
Jen- I am a working fool these days.
I really miss you all.
(((((((hugs))))))) and lots of love to all.
Jean
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Well, I found out today that I have been having mild, sub-clinical lymphadema since the radiation-induced swelling in December. At least I know I am neither crazy nor a hypochondriac. The PT told me they are hearing my kind of "symptoms" as anedoctal data at conferences but there hasn't been any real research yet. She was very nice and understanding and I will get fitted for a sleeve next week. The good news is she thinks that with some exercises and using the sleeve for a few weeks, it should go away completely!
And that was the good part of my day, which should tell something about the rest. Like the fact that I don't really like my dentist's office anymore or the fact that this thought ran through my head: "Well, at least when I had cancer, people were more responsive when I had an infection." It could have been worse - I could have said it out loud in the waiting room.
Wishing everyone a reasonable Thursday...
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Cristine, sorry about the LE and the tooth (root?) infection.
I never have liked dentists; I have several reasons for that, which I won't describe here (trying to block them out). As for the LE, I've had mild, transient, subclinical LE ever since I finished Taxotere & Cytoxan a year ago, and maybe even longer than that. My therapist said the same thing: there is more and more acknowledgement of a subclinical form of LE that cannot be measured but can be felt and detected in other ways. My forearm and hand would get an achy feeling that was hard to describe, and I'd feel a fullness in the tissue. My therapist and I could both see some swelling there, but it couldn't be detected by measurement. All I can figure is that our nerve endings are a lot more sensitive than some silly tape measure...
Eddie, my immune system ate my thyroid gland several years ago (or so I was told). Seriously, I have what's called Hashimoto's thyroiditis. It's an immune-mediated problem, but the result is zero (or very low) thyroid function. The treatment is really simple: thyroxin. I've been on Synthroid since 2001, and it truly has been no big deal. For awhile my doc had to tweak the dose to get it just right, but now it seems stable. (It jerked around during chemo, so we just ignored the values then.) There are tales about links between thyroid dysfunction and BC, but so far I haven't read anything that makes me worry (not that there is much you can do about it anyway). And, the bad news/GOOD news is that when you have low (or no) thyroid function, it is very hard to lose weight (most people GAIN weight) and you might feel sluggish and weak, but all that gets better when you get on the right dose of thyroxin. Oh, and thyroxin (even the brand-name version, Synthroid) is very cheap as drugs go. It's available as a generic, but my PCP likes me to take the brand-name; it still costs less than my usual co-pay.
I am having a reasonable Thursday, although it got down to 48 degrees in this travel trailer last night. The heater stopped working when we were somewhere north of here, on the coldest night so far; so we've compensated with more blankets and baking muffins for breakfast instead of having cold cereal.
And, yes, Robin, I am far from Fairplay by now. I felt really guilty sneaking through central Colorado without contacting you, but we're on this crazy "If today is Tuesday, this must be Del Norte" journey. My dh wants to fish some of the famous trout streams in Colorado while we're here. We are headed in the general direction of home, stopping in OK to visit his family on the way. I have a recheck appt with my BS and a regular (non-panic) mammogram scheduled for Sept. 3, so we need to be back before then. When I saw how close we were to Colorado Springs, I thought, hey, maybe we can meet in-between; but there just wasn't enough time. We'll be back, though...
Hugs to everyone I haven't mentioned. I have a very weak internet signal here, along the skinny, rocky Rio Grande just west of Creede, Colorado. (If you've ever seen the Rio Grande in Texas, you would not believe this. I'll try to post a pic on my FB page.) There is no electricity in this campground, though (as usual); so it's laptop battery power and then blackness...
otter
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Hi Everyone!
Heres the headline on breastcancer.org today=
Breastfeeding May Cut Hereditary Breast Cancer Risk
Articles like this just baffle me- even the geneticist I had to see was baffled by me- 5 children, all breastfed 10-18 months each. My brother thought that should give me immunity LOL.
I started feeling crappy this week- thought it was allergies but today it just totally hit and I went in for a sinus infection, upper resp crud- so now Im on Amoxil. HOWEVER, I realized this is the first time posy chemo I have had to take medicine for anything regular health related. The doc today thought that I was doing great having over a year post chemo with no illness- SO I will celebrate that for the weekend!
Kristy
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oh dear, it's been a long time since I wrote here... I think you all know many times a day. . of all the people in my world I trust that you.. my chemoclan will know this...
I know most of you at least see my stuff on FB, and get caught up with how nuts things are in my world.
1) I finally got the insurance claim done for the flood in the storage room, I will get a little money coming this week, but can't afford to replace the damaged goods yet, we will have to use it to pay bills.
2) The Bookkeeper is getting things together so I can go the bank and beg for more money to get the store back on it's feet..
3) My last Herceptin was on the 7th. I went alone, my kid was at an amusement park. Tim was too busy at work. The nurse got me with one, unpainful poke. The nurses barely noticed, the receptionists hugged me and made me cry.
4) One if the Tax departments has now placed a lien on my house for a debt we let get out of control. A pain in the ass at worst...
5) Most of my workout schedule has gone to hell while I try to focus on getting the business back to selling more, but I have found a running partner which is kind of fun.
6) Eddie, can I get info/a copy of the pound a week diet?
ummm 7) No Gene test results here yet...so, no recon plans until I know...
8) Kid is home from his camp weeks, he loved most of it
9) Hoping to maybe do a mini tri on Labour Day weekend....
10) Sadly, the October Texas trip is in jeopardy because of the store and financial issues... I have not even been on the bike this summer at all.
11)Knowing Rock is on this continent makes me feel good, knowing Otter is writing us lovely cards from all over yonder and back... makes me happy too...
12) super Sorry for Dana's chemo, Mary's sis and Dad... and the teeth and funny named drugs... Synthroid?? Halloo?
13)... oooh scary 13...
14) Kerry? That Gap is craaazy for central health care??!!!
15) ok, I'm done... more on FB later... love to all!
xoN
P.S. Robin.. from weeks ago.. I did not know Dr's in the States would be part of the recession pain... that sucks!
Here Healthcare workers, Teacher, and Government workers were not touched by the recession at all. Yet people in these jobs still whine about how hard done by they are by the recession....not sure how having a 1.5% interest rate on your mortgage, Gas prices at an all time low, and every store on sale and your job with full benefits fully secure gives one cause to whine.
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Kristy - Yeah, that one kind of baffles me too. Sorry about your infection...:(
Otter - I know having the LE go completely away is asking a lot, but if it gets better and doesn't ache as often, I can live with that. Hopefully, they will start communicating that stuff to patients. Your wanderings sound relaxing...
Noelle - Whenever my dh buys a lottery ticket, our joke is that it's "our turn". I think it's definitely "your turn" to have a better year, month, day!! Sending un-recessionlike thoughts your way...
My tooth/gum feels better, so we'll see what he does to it next week. This is not helping my view of dentists. One last hurrah at the beach tomorrow before back-to-school!
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have i told you all today how much i love you? okay, love you. goodnight
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Roxi, how I am loving the talk about fairs (we call them 'shows'), pigs and turkeys. I so hope you get Grand Champ, although my jury is out on the notion of turkeys being 'nice birds'. I saw a very funny thing once, years ago. About 20 turkeys UP A HOLLY TREE!!!! They looked like Christmas decorations...I had never considered that turkeys are.....well......BIRDS after all!! Linda, I cannot believe what you are running. I feel as though my legs are filled with liquid lead. What is the answer to getting them firing again? I know I need to lose a stone..I feel so heavy and leaden..but man..they just won't spark up. It is freezing here atm..the most unbelievable squalls and thunderstorms etc. Watch out USA as you guys head into autumn and winter. Crazy weather, I reckon. We have just been out to dinner with hub's best mate, and his brother, who is the pre-eminent chemo specialist I have referred to in the past. I have never met him before, even though he advised on my pathology and THREATENED me about Femara. He is such a nice guy, and kept telling me how pleased he was to meet me...presumably because I live to tell about it
I'm sending you all much love and wonderment, and all of the other things of value. We are all work-crazy, but let's remember how mad life was a year ago. Did I dream it......? XXXX -
And Noelle, it IS your turn! Dadnabbit!
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Hello, hello, hello. It's so comforting to drop by this site, even if only for a short time. I'm now exactly one year out from my last chemo treatment, and I know that without this group, the going would have been much, much harder.
Love to all!
Linda
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Me too Linda, a year ago today I had my last tx......this past year has just flown by. I still have not had to have a haircut since it started growing, it seems to have stalled....or maybe i'm just reluctant to take that step, it probablly could use a tidying up !
It's freakin hot here today, too warm for me....I like it just a bit cooler. I might just have to go jump in the lake, the water is finally warm enough.
Not much to say....other than... have a wonderful weekend ladies !
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Morning all! Just stopping to have coffee with you and catch up.
Otter - Your descriptions are so incredible, it is as though we have traveled this with you. Keep on writing!
Chris - sorry to hear about the LE & tooth, but sounds like both are going in a positive direction.
Congrats to all on the 1 year out, mine is August 27th. That feels like such a short time ago & such a long time ago. Ironically, I also noticed Kerry's new "tag" today which sums it up perfectly for me . . . . I'm sending you all much love and wonderment, and all of the other things of value. We are all work-crazy, but let's remember how mad life was a year ago. Did I dream it......? XXXX
Kerry - I had the same problem with my legs, no spark, just bricks. They have been slowly coming around after I started tx for my inactive thyroid. Not sure if they are related, but happy to be moving just a little bit faster.
Off for a run & a golf tournament. Family reunion tomorrow.
Love you all!
Jean
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Happy Saturday, ladies - the weather her is awesome. We only reached low 70's today and have had the windows open. Everyone is sneezing, but I guess that is the trade off. We have survived the first full week of school and all is well.
Congrats to those reaching the one year mark for chemo. It does seem like it was a long time ago, but has gone fast at the same time. A year ago I was starting rads and thinking I would never get through 33 treatments. Now I just don't feel like doing anything. I keep thinking thyroid, too, but we did the bloodwork for that last month when we getting back into period mode.
I love reading about everyone's summers and travels. Dana - we are still going with you to chemo. How are you doing?
Hugs to everyone - Julie
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Jeano, good tip about the thyroid..maybe I'll have a test (if I can possibly make myself have another blood test). I met an amazing man yesterday who is building a shed and cabin over the road from our shed at the beach. He showed me all around his positively amazing finished projects (including a fish-smoker with an underground updrafting pipe from the fire to the hanging fillets in the smoking chamber) and his carefully hand-made kitchen benches. He was a little weird (apart from his fascinating English accent and Touretty conversation) ..he had a kind of 'chemo-lapse' in his phrasing and waddya know? He has cancer. He has a really rare blood cancer and collapsed immune system, and has chemo every month. He is in remarkable shape (he is 62) and I think is taking most positive approach to whatever time he has left. He talked so emphatically about living life 'in this exact moment'. We had so many laughs. He asked me if I minded talking about 'this stuff', and pointed out that he has no-one else to talk to about it, except doctors. Interesting, isn't it? I think we will be good friends, and Drew can take him out in the tinny, which he will love. We are all just about one year out from chemo (my last date was Sept 26th). Has this year flown, or am I just imagining it? We booked a trip to Thailand for May next year..the flights are so cheap. But I felt weird about planning something so far in advance....sigh.....cancer-residue. Love you all XXX
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Jeano, good tip about the thyroid..maybe I'll have a test (if I can possibly make myself have another blood test). I met an amazing man yesterday who is building a shed and cabin over the road from our shed at the beach. He showed me all around his positively amazing finished projects (including a fish-smoker with an underground updrafting pipe from the fire to the hanging fillets in the smoking chamber) and his carefully hand-made kitchen benches. He was a little weird (apart from his fascinating English accent and Touretty conversation) ..he had a kind of 'chemo-lapse' in his phrasing and waddya know? He has cancer. He has a really rare blood cancer and collapsed immune system, and has chemo every month. He is in remarkable shape (he is 62) and I think is taking most positive approach to whatever time he has left. He talked so emphatically about living life 'in this exact moment'. We had so many laughs. He asked me if I minded talking about 'this stuff', and pointed out that he has no-one else to talk to about it, except doctors. Interesting, isn't it? I think we will be good friends, and Drew can take him out in the tinny, which he will love. We are all just about one year out from chemo (my last date was Sept 26th). Has this year flown, or am I just imagining it? We booked a trip to Thailand for May next year..the flights are so cheap. But I felt weird about planning something so far in advance....sigh.....cancer-residue. Love you all XXX
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Canceversaries coming quick for one and all...
On thyroids, I was informed mine is way overactive and working too hard and I should go on meds. I have no symptoms as my energy is good. I told onc I would consider going on after colonoscopy (this Wednesday) and "deportation" surgery on August 31. My question is will the meds:
* slow down my weight loss program (seven pounds in six weeks)
* make my energy go whacky? I like exercising an hour a day and feeling good
* make me moody? I am generally even and in a good mood a lot.
Got answers? Still haven't heard if the Cipperly family received our package. I haven't checked to see if the check I sent was cashed. Will do that this week. Love to all of you. Wish me luck on my cleansing colonoscopy (I am a colonoscopy virgin and a bit nervous). I have spend the weekend helping my mom move in....stories another time.
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Rats. An hour ago, I was typing merrily along, telling y'all about where we were at the time, and.... POOF! My post simply disappeared, mid-word. Don't know what happened. Coincidentally, I lost my internet connection. Hmmm...
Anyway, we're driving on I-25 in extreme southern Colorado at the moment, headed for a campground in New Mexico. Last night was the last of our cool, mountain-air nights, I think. (Robin, you live in a wonderful part of the world!) Everything is going well. We have descended from 9,500 feet (or higher) down to about 6,000 feet, which has made my transient/Stage 0 LE-arm feel much better. Actually, it was my chest wall (mast/SNB side) that was bothering me the most at the higher elevations. Don't ask what I was doing about it--I wouldn't want Binney to find out what I wasn't doing.
Oops. The freeway just got really bumpy. Funny, how the freeways have usually been the worst roads, with respect to ruts and bumps and lack of maintenance.
eddie, the colonoscopy will be a breeze. You'll get sleepy drugs and will wake up an instant later with someone offering you juice or a soft drink. My only advice is to drink-drink-drink. Keep your fluid intake WAY up, before and during the prep time, and afterward for at least a day. Keep those kidneys well-hydrated. I cringe whenever I read someone joking about how much weight she lost during a colonoscopy prep. That's ALL fluid loss--no true weight loss. That's a sign of someone getting badly dehydrated, which is not a good thing.
Okay, enough of that. I'm worried I'll lose my connection again, so I'll cut this short. Ha ha--too late for that! Don't know if I'll be able to send out another round of postcards before we get home. It has been lots of fun, thinking about y'all as we wander through the midwestern mountain states. I really do wish you were here!
Love and hugs...
otter
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Funny story from the reunion today (Mom's side of the family).
My uncle appeared to be avoiding me at the family picnic today. As everyone was leaving, he walked up to me laughing and explained that he had spent the afternoon looking at me wondering who Patty's (my sister) friend was. Serious, neither of my uncles recognized me!! The dark hair threw them off. Way too funny!!
Happy Monday to all!
Jean
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Hello to all...no real news here except I get my nipples on Friday..day surgery. Thanks for the postcards, Otter, and the descriptive posts---I am very envious of the cool nights especially. Cris, sorry about the LE and tooth pain. Whomever is running 40 miles a week has my unending awe. I have started an exercise program that is at one of the local hospital fitness centers, and is only for BC survivors. I am going on Monday, Wednesday and Friday. It's 30 min. of aerobics, 20 min. of weights and 10 min. of stretching, but it's never the same and the instructor has the knowledge to go to each person and help them modify whatever the class is doing, tailored to each person's strengths and weaknesses. I am the youngest there by ten years or so but everyone has been really nice and welcoming. It's free, provided by something called the Texas Chrysalis Foundation. I am seriously enjoying it, feeling stronger and losing weight. And my whole body hurts, but in a good way.
Noelle, sorry for the craziness with the store and financial difficulties. I wish I could help. I will buy some birthday presents from your store at the beginning of September! (I have to wait until I get paid
). Kerry, glad my new boobs were inspirational for you. Also glad you are done with that fecker cancer, so am I. Mary, Linda, Julie, Jen, Dana, Karin, Jean--I miss sharing my days with all of you (I know I have left some out, please forgive me and know that you are included).My one-year chemoversary has come and gone, it was August 7th. I almost totally forgot about it, I thought about it at bedtime. That was a good thing.
Love to all of you and a good week next week!
Sue
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Noelle,
Here is the diet. Eat a bit less of everything and bulk up on veggies. Have soup and/or salad (no-fat dressing) for one meal a day and, finally, exercise at least one hour a day. Seems to be working for me. I still eat fun treats, but just smaller portions of one and all. That's it. I think it'll all be thrown off this week with colonoscopy but I promise, Otter, to drink tons of water. Love you all and I am planning the deportation party for the 31st after it comes OUT.
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Hi Everyone!
Eddie, the colonoscopy is nothing AND they give you the good drugs so you forget virtually everything about it. I was sitting at home around 6 PM the day I had mine and looked down, realized I was fully dressed and had NO IDEA how my clothes got on me. Called my mother who had gone to the appointment with me and asked her "Who dressed me?" - she almost peed her pants laughing because apparently I completely dressed myself, went to the potty twice, tied my own shoes etc and remembered absolutely nothing of it!
Anyone heard from Dana lately?
Kristy
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Dana was on FB this evening. She was in good spirits.
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Eddie - I will echo the "no worries" about the colonoscopy. A few years ago, when I thought I only had to worry about colon cancer, I had one. For me, the prep was worse than the actual procedure which (like Kristy!) I remember very little about. My prep included any clear liquid, so I had chicken broth and some orange jello (no blue or red!!). You will be FINE.
Julie - We are a week behind you, the first day of school was today. Katie is in 5th now (geez, I can hardly believe that!) and Kelly started first grade. I got a little weepy leaving her school as I realized a) she would be there until almost 3 PM, and b) this is the first year I don't really know either of their teachers yet. I hope to say on Friday that we lived! Oh, and Kelly got lost today during lunchtime when she got separated from her class. Fortunately, she was rescued by her Kindergarten teacher!
Sue - It's really good to see you! Retirement looks good on you!!
Otter - The vacation sounds fun, but not the LE junk. Speaking of which, I have a fitting for my compression sleeve tomorrow. I'm anxious about the idea of having to wear it to work. I think I did a reasonably good job of keeping my health issues away from the inmates, but not if I come in wearing that!
Okay, I've been chatty today. Unfortunately, I have to get up when the girls do, so time to go. Happy Tuesday!
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Hello ladies! Has anyone else's life been crazy upside down here lately? I feel Like I have rarely been home the past few months and my house shows it. I have a head scan this thursday for headaches I have been having, monday appt with doc about jerking out this post wooohoooo! next thursday last treatment. I just feel like a million things are going on all the time.
Hope everyone is doing well this week and getting some of the gorgeous weather we have been getting. Actually had the windows open and air off for 4 days. That was a treat!
My love to each and all! :O)
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Hi, just a quick hello.....off to take mom to doctor for a checkup.
Jen good luck with your scan ......the only thing it will show is that you have a beautiful , wonderful, healthy, caring, loving head on your shoulders !
Wow some of the kids get back to school early...up north here they don't start until Sept 8, but they do stay in school until the end of June. So one more week of summer for us !
Have a great day !
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Colonoscopy.....clear and free for ten years......
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YAY, eddie!!!!
otter
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Yay, Eddie, too! Jen - good luck with your scans. We'll be right there with you. I do blood work and a chest x-ray in a few weeks. Can't believe it's been almost 4 months again.
Hugs to all - Julie
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What ablur...so sorry its taken awhile to catch up. Yeah for last herceptins and colonoscopies! Good luck with scans and all the other stuff that will follow us for awhile. YES to new flipples! I won't get mine until October.
Fair update...my oldest was crowned Fairest of the Fair and will compete for the statewide title in January. My youngest tom turkey weighed 45 lbs and won Grand Champ and Best of the Barn of all the poultry. It was a great week. Life is good.
Love you all, Mary
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Jen - Yes, crazy but I've been home all week and now it's better. It's little things, like getting all the necklaces the girls have organized with simple hooks. Whew. Will be there for the head scan...
Eddie - Doesn't that sound good?! 10 years...Yeeesss!!
Roxi - Woo hoo!! A princess and a turkey!!
I realized earlier I have been lax in my Larry the Cable Guy wisdom posting, so here goes (this one's for Jen):
"When everything is coming your way, you're in the wrong lane."
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