Starting Chemo March 2015

Trvler

Theresa: I would love to hear more about the taking your daughter off any sugar. I assume it was just stuff like candy, ice cream….and that kind? That would kill the little beast because she LOVES dessert but I am willing to try anything.

Just to update you a little, they put in a reward system for her. She WANTS to stay. She earned one out of two possible stars. But it's a start. At least I haven't been summoned to get her today as I figured would happen.

U2: Great but I thought my seats were at the corner of the oval and we were in the corner but they flipped the stage to the other end and we mostly saw their backs. I was kind of mad but they didn't do a huge visual show this time so we didn't really miss much. The music was good. I have seen them 3 times now and Bono is just as good and cool as ever. I continue to be baffled by why they won't play New Years Day in concert. I heard sometime ago they don't like to and I knew they weren't going to be I keep wondering why. I found stats saying they had played it in 4 shows this year but it has tapered off from 1987 where they were playing it at every show. They added two more shows in Chicago so I heard they were reselling for as low as $8 a ticket. Of course we paid way more than that. GRRR…lol

Katy: You did it!! And you are am amazing, special lady. I hope from this day forward you feel nothing but better every single day. I don't know how you did it but you always managed to make it though the rough days. I am especially amazed at how nice you look to go to chemo. I take a shower and throw on my hat.

Avmom: Are you taking glutamine? I am sorry if anyone has asked already. Just hoping there is something that will help.

Based on all of your posts, I went out to dinner last night and this place makes a killer liver. Now I know that at least half if not more are going GROSS. But both my husband and I have always liked it and it is rare to find on a menu. This place has it in the fall but said if I request it, they would make it so I did when I made the reservation via email. I fully expected them to say we don't have it but they did and it was AWESOME. Just trying to keep those blood counts up there. It must have worked because even though we went to bed late last night, I feel pretty good today.

SizzleStitch

Just checking in to see how everyone is doing...

Katy....congratulations! 🎉🎉🎉🎉🎉🎉🎉🎉 You did it....so happy for you. We are hair twins for sure...my hair looks very much like yours.

Congrates also to all those who finished chemo since I last checked in. 🎉🎉🎉

I am five weeks PFC. I feel pretty darn good. I still get tired and my chemo brain is still bad but part of that could just be stress overload. Things in my life continue to be difficult... Had MO appointment yesterday and all blood tests were good! I just have to get my head in a good place and stop worrying about the possibilities...

Take care everyone.

Jackbirdie

thanks Allison. So glad you like something that helps the counts. And really happy you are getting out, enjoying at least part of life. Happy about that. 💕💞

Jackbirdie

thanks Sizzle/ great to see you. Glad you're MO appt went well. I think with time we will all learn to live without bc dominating our thoughts. I wish this fervently for you. Be patient and loving with yourself.

littleblueflowers

Congrats Katy! Thanks for being such a positive voice here!

Italychick

Allison, I love, love, love liver! I made a homemade chicken liver pate a few weeks ago (organic chicken livers), and my little dog ate half of it lol!

As for the no/low sugar diet, I also cut down on her processed carbs because they turn into sugar fast, and made her crazy - things like chips, noodles, rice, etc. So with her I stuck mainly with meat, vegetables, yams, and low sugar fruits like berries and grapefruit - same diet I do when I am trying to lose weight. I would bake her cupcakes once in awhile as a treat, but no frosting, just the cake part. It becomes easier when you think remove anything processed, and remove sugar. So Delicious makes a no sugar added coconut ice cream if you can find it. It is in a funny green container, and I love it - it is my go to dessert. The other good part is it has a ton of fiber too. We can PM each other and I can share more tips with you.

Be well everybody - off to the Del Mar fair today with the grandkids - sure that will trash my butt good!

Trvler

What year did you leave Chicago, Theresa? Have you ever heard of MK? That's the liver place.

I will think about the sugar thing more. She isn't a huge pasta fan. We have it about once a week. She's also not a big meat fan. She loves fruit and she has been snacking on popcorn a lot lately. But yes, I am interested in discussing this further with you. I will PM you with my info.

DavisD

I've  been out of the loop for awhile, just working and sleeping. So much going on and so many "bell ringers" I am so happy for all of you, gives me hope!

I've also been having ongoing tearing from the Taxotere and the painful procedure I had less than two weeks ago is no longer working. I called the MO yesterday and stressed how bad this tearing thing really is....if I don't really need another round of Taxotere I'm fine with leaving it off! Guess what? They left me a voice mail the doc says he's going to leave it off on Tuesday. I may regret it but don't think so. I looked up Taxotere and side effects in the eyes and found a ton of women who had permanent damage so hopefully mine will get better. I see the opthamologist on Wed and no way is he putting needles in my eyes (below) again without knocking me out! Maybe with one less drug this last round won't be so brutal...

Congratulations to Katy and everyone finishing up and nearing the finish line. I love you all!

Trvler

Yikes, Diane. I know you have had issues with that for a while. I hope they can help you.

Jackbirdie

I can't imagine someone sticking a needle in my eye without being fully unconscious. So sorry that procedure didn't help much or for long. We miss you around here

TerryMarie

Hi all , hope everyones coping well. I haven't posted much lately, I am getting better as far as side effects are concerned , ( I am now post chemo for 5 wks ) The skin issue was terrible, my face was blotchy and the skin around my eyes were peeling like crazy. That finally went away and really the lasting effects now are my finger tips are still tingly and it looks like I may lose a nail or 2, not sure yet. The worst side effect so far however is my eyesight. Everything is very blurry. It's really driving me mental. I hope this improves, I am squinting right now. I do normally wear glasses but for distance only, now, close up is a problem. Anyone else have this problem?

Im starting rad next Friday, 4 wks worth. Should be ok. I had my CT scan and the planning session and the position i'll be in will be ok. Onward.

avmom

Hi Carrie37. Yes, I am done with Taxol. I did four rounds of dose dense (every two weeks) Adriamycin and cyclophosphamide, followed by four rounds of dose dense Taxol, with Neulasta after each round. I'm now two weeks and three days PFC. The drive to the main cancer centre is a big one. I live in the middle of nowhere (or at least, you can see it from my living room window), and it is a strong hour, maybe an hour and fifteen minutes to the city where the main cancer centre is located. Add traffic, and parking, and you have to allow lots of time, particularly because it is the height of the road construction/repair season. I had to do the first round of each type of chemo at the main cancer centre, but once the first round was in without major incident, I could do the remaining three rounds at a regional satellite cancer centre, just a 45 minute drive away. I have a relationship with the MO there, as well. The nearest community to our home is a small village of about 380 souls, about 5 miles away.

Allison, I haven't been taking glutamine, as my docs were very clear to stop all supplementation except calcium and vitamin D during chemo. I think I'll try to organize atrip to Costco (also in the city, so a bit of an adventure) to pick some up. My hands are a bit better, which is encouraging, but my feet still feel frost bitten .

Katy, congrats on going commando. It was hot here today, 30 degrees C, so maybe low eighties F. It is supposed to be 38 C tomorrow in the area, which is about the borderline for going to the hospital during chemo because of fever. Looks like we will have good weather for our local Sports Day at our village.

Sports Day is a short weekend of events, kind of like an annual homecoming. The beverage tent opened tonight. Tomorrow morning, there is a breakfast at the community hall, followed by a small town parade. What's a small town parade, you ask? It's a parade where, after the pipe band goes past, the people on the floats give out candy and other treats to the children who are lining the side of mains street, like Halloween, but the kids stay in one place with their treat bags. One year, every kid in Town got a super soaker, and a wet, fun time was had by all.

There is a concession booth selling burgers and hot dogs in the afternoon, with an old timers' softball tournament, beach volleyball for the teens, a version of the amazing race for Tweens, (often) soccer for the elementary school kids, and a bouncy hut and face painting for the little ones. There's a barbecue roast beef supper back at the hall (did I mention that I live in cattle country?) and a dance to round out the events on Saturday night. It's all volunteer, and most everyone pitches in. Everyone with a PO box in the village gets a comprehensive work list, and the deal is, you find your name on the list and show up for your shift, or you find your own replacement. My DH and I have been the "bosses" (your name gradually floats to the top of the list if you stick around long enough), and we didn't even have to call the workers for our shift. We show up, they show up. When you first get on the list, you are asked about your preferences, and unless you ask to change, you tend to keep the same job, same shift, year after year, so your shift is an opportunity to catch up with your coworkers, whom you may not have seen for a while.

I was taken off the work list this year because they make it up earlier in the spring, and I wasn't doing so well, but I think I'll try to stop by, if only to visit. DH and I generally work at the concession stand between 1 and 3 on Saturday afternoon. Don't want to lose my spot or have the community think I'm a slacker! I'm sure they will remember to put me back on the list next year. The community is so small, most everyone understands that, if you aren't prepared to pitch in, things just won't get done.

Best wishes to all for a healing weekend. I'll be breaking out the sunscreen and a big floppy hat!

Jackbirdie

Avmom- the community weekend sounds idyllic. I just moved from a 1,000 person working finishing village where they have a very similar 4th of July event, and there's a quilt show, and a parade, with the same passing out of candy, and antique fire trucks rolling, the mayor riding is an open car. Some of the events are more driven towards beach events. Coming always from big cities, I was amazed at how touched I was by this coming together of community and sharing of work load.


I hope you begin to get some relief from this very serious and QOL affecting neuropathy. No small matter. You are in my thoughts. Please know that. And always glad to see "you" when you post.


Best wishes in the upcoming weeks

DavisD

TerryMarie I'm sorry about your vision problems. That is very scary. Any possibility you are around 40 and beginning to need reading glasses anyway? Hopefully it will reverse in time.

Avmom sounds like a wonderful event and that you have treasured memories from many years and will have many more to come! We have a County Fair in August which sounds a little bigger but very similar.

Katy have you moved already?? I'm sorry I haven't stayed up to date on everything. Last I knew the inspection went well...I'm so happy for you and your furry kids!

 

Trvler

Avmom: That sounds like a lot of fun.

BBwithBC45

TerryMarie, I am 5 1/2 weeks PFC and I had a similar issues with my vision. I have glasses/contacts for distance, but midway through chemo I started having problems with seeing up close and I was squinting a lot. I work on computer and I had to zoom in on a lot of applications I was using. I even bought over the counter reading glasses. My vision has gradually improved since finishing chemo, I am back about 90% to pre-chemo.

Jackbirdie

Diane- I probably won't move til around mid-August, if all goes well.

I have cataracts in both eyes, perhaps caused by chemo, for sure exacerbated by it. Hopefully I can get both surgeries done in this my "free" year, now that oop has been met. They say it is an easy surgery, and no needles. I am not suffering the terrible watery-ness, just the crusties and my vision has deteriorated dramatically. I do not work, which is lucky, and doesn't interfere with my life close to what it does you and the others. I am very sensitive to your pain, worrying, and major discomfort. I am sending my very best wishes for some relief.

So far, knock wood, chemo 6 is no worse than 5. Keeping my fingers crossed.

Wishing everyone a good weekend. The best possible.

XOXOXO to all.

K

ninjamary

TerryMarie I noticed today that my vision is horrible. I wear glasses for distance and only needed readers when I wore contact lenses. Now it seems I need readers (weaker ones) just to see my cell phone. I hope this ends when chemo is over. I refuse to get laser surgery. I've heard too many horror stories where it doesn't work and/or it makes your vision worse. No thank you.

molly1976

My vision was much worse by the end of chemo, too, but I'm 4.5 weeks out and it's getting better. It seems like my eyes still get really tired by the end of the day but I'm not squinting all over the place anymore.

rleepac

I'm a little behind on posting but Carrie37 - I hope they let you keep your port. I wouldn't want to get stuck every 3 weeks for an IV. When I saw my BS she said they would leave the port in for me. I was ready to arm wrestle her about it but she brought it up and said it would stay so I didn't even have to fight for it.

Did Taxol #9 on Thursday and doing pretty good today. A little tired but I don't have the diarrhea that I've had the past few weeks. Imodium works much better for me than the Rx Lomotil so maybe that's making the difference?

Going to my 25 year High School reunion tonight. It's a casual summer venue and there are only 25 people confirmed (grad class had 150) so it should be pretty low key. I'm friends with several of them on FB still so a lot of people already know about my BC. I just hope I have enough stamina to stay and visit for a few hours.

Starting to get some neuropathy in my fingers and my big toes. It's not terrible but annoying. MO says when I can't button a shirt or write without a problem to let him know and they will cut my Taxol dose. It's not that bad yet so I'm hoping I can get through my last 3 treatments without having to cut the dose.

My hair is still coming in pretty good. I'll try to post a pic later today. My eyebrows are almost gone and my lashes have thinned significantly.

I guess that's all I have to report!

Bekah

Jackbirdie

Glad you're feeling a bit better Bekah

Trvler

Bekah, are you doing Glutamine?

pboi

I too have noticed my vision declining. BB good to know yours is back about 90% now. I need new glasses and was trying to figure out when post chemo would be a good time to go.

I have been so encouraged "seeing" everyone get through chemo one treatment at a time, and one by one crossing the chemo finish line!

I hate to be such a downer, but am having a meltdown myself today. I'm a little over two weeks PFC and the side affects did accumulate after the last one, so still dealing with muscle/joint aches and neuropathy and trying very hard to be patient. I'm freaking out now about my thyroidectomy coming up on Tuesday. I had a PET that found a nodule, and now have papillary thyroid cancer. Everyone tells me this surgery is not that big of a deal, but with BC, just finishing chemo, and starting rads the week after surgery, I'm overwhelmed. I have 3 kids to take care of and am trying to stay busy and not think about it too much, but I don't know how I'm going to hold it together til Tuesday. 😢

PB

Jackbirdie

PB/ I'm so sorry. Well-earned meltdown. I had one when I found out about cataracts in the middle of chemo. Everyone said it's an easy operation but still. Will it ever stop? Answer yes. Someday. You must let it out. It's normal. But who's taking care of you? Sounds like you're still the main caregiver around there. One of the hardest thing about the shit sandwich is asking someone else to take a bite out of it for you. But you must ask for help. Please try to do that. There must be someone that could make a meal, come over and help tidy up abit. Take the kids out for the day. Please ask for help

Jackbirdie

Indygal- Lee, i have Tuesday as your last chemo. Is that the right date or is it a week later due to your earlier derailment???

so-she-did

One of my chemo angels wrote this in her last card and I thought it was very apropos, especially for you right now, pboi.

Healing takes time so please be good to yourself and know you need to rebuild before you can conquer.

pboi

Thanks Katy! My hubby has been helpful with the kids as much as he can when he's not at work. My mom will be coming on Tuesday to help for a few days. Mentally I'm having a hard time wrapping my head around all of this. I'm just starting to recover a little from chemo, with the hope that rads will be kinder to me. I don't want to think about having surgery now!!! But I am...wondering how not to go crazy with worry/anxiety for the next few days, and hoping it will be done and over with soon.

PB

pboi

Thanks Amy!

PB

so-she-did

(((hugs!)))

Jackbirdie

Amy- so apropos indeed! Thanks for sharing that. A few more days of sledgehammers and I'm ready for the rehab! Better yet- a makeover!

Pboi- hugs from me too. I'm glad your mom is coming. Great news. Remember you are never alone. Your sisters are all around you. Always.