Starting Chemo March 2015

littleblueflowers

Oh wow, katy. Just wow. So beautiful!

ksusan

Lovely, Katy! Visually engaging but soothing.

jumbledbamboo

I'm sorry I haven't read all of the posts to catch up. Been so busy getting ready for surgery. Had it yesterday. Anyone blessed. with minimal pain after a Ooph is so lucky. My experience is not that. It hurts bad. I have lots of meds. lots of stress. I wish they had kept me overnight. Ugh. I am going to go back and try to get caught up here. The drama in my house is just ridiculous. This is why I just do things myself

shaz101

jumbled it just broke my heart reading your post. I'm really sorry that you're in pain and your house is filled with drama. You need serine right now. I'm sending a little serenity your way xxx

Katy, I love your quilt. So artistic, I really like the colours and combination of sizes all bordered in the same colour.

Jackbirdie

Jumbled- so sorry you are in pain and there is chaos too. Those two words shouldn't even be in the same sentence!

Sending hugs and some fairy dust your way to try to make it a bit better. Hope you have some pain meds. If you do, take them on schedule and stay ahead of the pain.

ninjamary

Allison - sounds like you are doing well from surgery. Yea for you.

Katy - that quilt is looking fantastic

Trvler

We checked into a hotel yesterday and I am having a hard time. I am peeing way too often and it is hard to empty my bladder. I don't think I have a UTI since I am on antibiotics. I just think my system was so overwhelmed with fluids. I think I am feeling depressed a bit, too. I want to be home. They changed my postop appointment from 10:30 to 9 on Tuesday. I could have probably gone home Tuesday but there were no flights I would have been able to make after the appointment. I miss my girls so much. I know it is hard for them, too.

Jumblied: I am sorry you are having a hard time, too. Hugs.

eheinrich

Hang in there jumbled. It sucks to deal with pain & house drama.

Allison, you'll be home soon. Take care you yourself.

hugs to all

slothabouttown

Allison, jumbled and Eileen,

Take some pain meds and deep breaths ( if it's not too painful)

Jumbled, what was the reasoning behind having your oopherectomy on this timeline? I've actually been thinking about having one before the end of the year for insurance reasons. My BS said it wouldn't be a bad idea given ill be on the tamoxifen for at least 5 years. But with an ooph you can move on to another AI that might be more effective than tamoxifen? If you're not in a good space to answer I totally understand. Sorry about the drama.

Allison, I hope you get home soon and get a seat on the plane near the bathroom. And Eileen, glad to hear things are improving for you pain wise, keep your feet up and your BIL busy helping you recover.

I have the bracelet and will be adding my contribution today and sending it on its way Tuesday. Ill send a pic later today!

Jackbirdie

Allison- so sorry you are struggling. I bet you do miss your girls. You will feel better when you are home in your own bed. It's a while yet on Nawlins time. Will you be able to take a walk down Bourbon St for entertainment value?

Jackbirdie

Bracelet news- Sharon, who has been next in line so many times, and deferred her spot, as she thought Indygal needed a lift and gave up her spot. Again. And poor Lee, with all that darn TE pain snd so many months struggling was deemed the benefactor.

So Sloth is sending it to Lee next. We will then do the "Midwest Tour" and Avmom and Arlene, after that, if they are still interested.

Then I will send it to Sharon. She says she will wear it last and bring it in PERSON to our Lake Arrowhead reunion! Talk about making an entrance. She will be wearing it!

I haven't seen a pic of the bracelet for awhile, but it sounds like Shaz may get "done" for excess baggage!

What fun that we are keeping our connection so vibrant and real.

PS. It's not too late for anyone who joined late to be part of the Traveling Bracelet. Just PM me if you need an explanation or just want to add your name. And Iwill need your physical address.

Here is the order of the remaining:

Indygal (next week)

Carrie

Arlene

Sue

Avmom

Shaz

It has been in 8 sistas' hands so far. If I've missed anyone please get in touch. I had chemobrain while organizing.

SueH58

Are you guys having an ooph doing so because of BRCA positive?

Hugs to the many of you recovering from surgeries. Hope your weekend is as painfree as possible.

Sue

Jackbirdie

Sue- I can't answer for the others, but I considered it because I wanted the better protection against recurrence of an AI, but due to not being completely through menopause, Tamoxifen was my only option.

He didn't think in my case the risk was worth the reward. There was a trial (called SOFT If you want to look it up) and it showed statistically significant benefits to younger women (around 35 I think) who suppress ovaries either by ooph, or a drug such as Lupron, then taking an AI instead of Tamoxifen. But my MO said being 58 I wouldn't benefit enough to warrant it.

I think other considerations, including genetic testing, and possibly TN (triple negative) bc, as TN is said to be more like a basal-type cancer, similar to ovarian, so perhaps they feel there is more risk there, especially since adjuvant hormone therapy is not available to TN patients.

avmom

hello, all.


It's been a while since I posted. I've just read through the last week or so, and can't seem to keep everyone straight.


I had been hoping to be feeling much better by now. I finally got around to a lymphedema consult, and I do indeed have LE on my surgery side. Just waiting for my sleeve and glove (with just the tips of my fingers exposed) to arrive. The toenail on my right great toe chose this week to come off, and the quarter inch of what's left is purple. Stupid that something so small bugs me, but between my temporary bandag sleeve and my toe, they are making me crazy.


Saw my reconstruction surgeon, who has recommended that I have the contra lateral MX, do I've seen my original surgeon, and that should be done within the next few weeks. It shouldn't be too bad, as he won't touch any lymph nodes. On the other hand, I'm not nearly as strong as I was for the first surgery.


I've been in to work a bit, but the mental fog is very frustrating. That isn't great at all.


I'm trying to see that I am better. After all, by the end of chemo, I was bald, incontinent, couldn't hold a pencil reliably, couldn't taste any food to speak of, could barely walk or stand without support, had gastrointestinal distress most of the time, and was debilitated by fatigue. Lots of those things are better. I'm not nearly as incontinent (don't pee my pants every time I cough, and i "shart" much less often), I can hold a pencil and my handwriting is recognizable, though i still tend to drop things. I'm still cane dependent. The fatigue is a bit better. So, physically, I am better. Mentally, I'm doing much less well. I seem paralyzed by fear -of mets, of resuming contact with the wider world, you name it it. I'm in a very dark place.

I'll try to do better keeping up on this board. I have even avoided reading this week (though I was at work every day, for the first time in months). I do care for you all.

Gentle hugs.

BBwithBC45

My gynecologist thinks it might be a good idea for me to consider oophorectomy, since I have been having ovarian cysts for years now. My MO says I don't have to rush. For insurance reasons it definitely would be good to do it this year, but I'm not keen on getting this surgery. Somehow I feel attached to my ovaries, even though they don't serve me much purpose at this point in time. I think part of me feels like I will be gutted by this stupid cancer even more. Isn't it enough it took away my breast and so much normalcy from my life?

I'm BRACA negative by the way. I'm battling with the decision.

Jackbirdie

Avmom- so good to hear from you, though I'm sorry to hear you are in a dark place. Someone said the other day, what kind ofa crazy messed up world are we in that we celebrate less constipation or D? Good for you for reaching out. We are still here, trying to take in the next steps life has to offer post-chemo.

Keep reminding yourself that we all heal on different schedules. It's good that you have tried to point out to yourself your improvements, but don't carve them into a stick to beat yourself with wphen you feel better, but STILL DONT FEEL GOOD. Big difference.

Sending you a hug. Please stay in touch through surgery process. Your sistas here will help get you through.

Jackbirdie

BB- always good to see you too! Keep us posted on your decision process. Hugs.

BBwithBC45

Katy, thanks! I'm always here reading, just not always able to post since I went back to work full time. I usually read while on the treadmill in the morning, or during short breaks at work and just not able to write while walking. I applaud you and other Ladies here for keeping this thread alive. I feel less alone thanks to you all.

wpmoon

Hi ladies!

I survived my first week back to work, but I'm exhausted.

I did my reading of my essay last Tuesday, and it went really well. The emcee of the event started crying when she introduced me, which made me cry, so I was sniffling through part of my reading. In the end, it was a success. They gave me tickets to their spring conference. A bunch of people in the audience were crying, and came up to me afterwards to thank me for sharing my story. All in all, I'm glad I ended up going.

For those of you not on FB, here's the link to the post: http://bcconnections.org/personal-story/writing-co...

Another friend of mine asked me to speak at an event, so we'll see what comes of that.

Love to all!

Jackbirdie

Awesome stuff happnin', Whitney! So proud of you.

Trvler

So proud of you, Whitney!

Avmom: I am so sorry you are suffering so much. I hope you can get some improvement.

My sister figured out why I was having problems with my urination. It was because of my catheter.

Msmath

Whitney I just read your story. You did a fantastic job writing it and I am glad you were able to share it and will likely continue to share it. I haven't shared this on this board but when my husband was 28 he had testicular cancer. We were faced with fertility decisions as well. At that point in our lives we had already been blessed with 2 children so we decided against freezing his sperm. We were told we couldn't have children in the future and I was ok with that because I just wanted my husband to live and be around for the children we already had. He went through surgery and radiation and was pronounced cancer free! A few months later because cancer is expensive I was looking for anywhere in our budget to cut costs and I found it... birth control. I was off the pill for one cycle when I started noticing pregnancy symptoms. I was very sad at first because I still wasn't convinced my husband would be around because the cancer could come back. It didn't help matters when I went to my OBGYN who had delivered my other two children and he recommended that I abort the baby because of the radiation treatment my husband had undergone just 6 months prior. I didn't listen to him thankfully because my very healthy son was born almost 14 years ago. All three of my children have handled my cancer in different ways but my youngest is the first one to see when I just need a gentle hug or to hear "I love you mom." I really feel God knew I would need Daniel to get me through some of the toughest days with this cancer. I pray that you will one day get a gentle hug and hear the words I love you mom.

shaz101

AV I'm so sorry to hear that you have fallen down into the hole. I will throw a few ladders and a torch down for you. We are all here for you. Xxx

Whitney did you go back early? I thought you were the 14th?

Allison I'm thinking if you xxx

I have my BS appointment soon. I hope I find out how I know if they think I'm cancer free!

Love to all of you xxx

shaz101

Whitney I'm sitting in the Dr's office crying. I've just read your story. Youre an amazing person. Xxx

shaz101

ok I've been to the BS. No tests 😕 mammogram in January. He said unless I get symptoms there is nothing to test. Chemo and rads was only done just in case there was any spread. It may have been a waste of time. 😨 hmm that's good to know NOW! Information that may have been useful BEFORE! I remember asking him 'if it was him would he do chemo' he said yes. Did I mention... I hate cancer! OK now I'm off to get xrays of my hands.

wpmoon

Sharon - nope, I'm back on time. I was only off for 8 weeks. But it's been good so far. 5 more weeks, and I'll be done with training.

Thank you, Msmath for sharing that story. That means so much to me. This cancer has changed a lot - including my desire to have kids. I've suddenly become indifferent on that topic. But, there's still plenty of time left in life to change my mind.

The hardest part of that story, is something I chose not to write about in that essay. But, I went through a breakup because of my decision to save eggs. I loved, and still love, him like crazy. But... he adamantly didn't want kids, and I was being faced with the effects of chemo on my fertility. What he failed to understand is that my decision had nothing to do with him. We'd only been dating 6 months, and he lived 3000 miles away, so it took every ounce of my being to make this choice without letting his opposition to kids influence me. To be honest, I'm still hurting from that loss. The IVF process was just as, if not more, difficult and emotionally draining than the chemo. The breakup during my cancer stuff is what has me so paranoid about being able to find someone who will look past the cancer and be able to see me as more than just cancer.

Italychick

Sharon, he said it may have been a waste of time? Wow! Did he say why? I don't think they know who chemo and radiation is effective on. I did chemo, but feel like it is a total shot in the dark myself

shaz101

Theresa, when I had my surgery he told me I would probably just have to do radiation. As he had clear margins, but when the sentinel node came back positive and the breast tumour was 2.3cm he said chemo 'may' be an option and referred me to the MO for advice. The MO said that if I didn't do both chemo and radiation I would have an 80% chance of it coming back within 5 years. So when I went back to the BS I asked him if it was him would he do the chemo. He said yes because if I do it now I was looking at a cure but if I don't and it comes back it would just be treatment. So I did the chemo. I'm still glad I did because I would be so angry with myself if it came back and I had opted not to do it. I just wish there was more info on what the process would be once treatment was finished. How can you tell someone they will be cured when there aren't any tests? The BS said they just use statistics as their best guess.

Trvler

Msmath: Thank you for sharing that very touching story. I am glad you have Daniel too.

Whitney: I know it's hard when it's YOU going through it but you will find someone. I can't imagine having a breakup and ivf during all of this but when you are another person reading the story you can see it through a different lens. Cancer doesn't define you.

Shaz: I absolutely think you made the right decision. You would have questioned yourself the entire time.

I still don't understand the terms cured or cancer free.

My brain is in a fog because I am tired. Trying to take less vicodin. I hate the side effects. My right thigh has gone numb and I think the compression thing they are making me wear on my legs when I am sedentary is making it worse.

Eileen: HOw are you feeling?

Italychick

Sharon and Allison, I would have been too anxious if I didn't do chemo, but I wish there had been another way. But for me, no other option with negative receptors. I seem to be recovering well, but once in awhile a little fear creeps in about any side effects I am not yet aware of. But I guess everything in life is a maybe anyways, so right now I feel like I did what I needed to.

I don't understand the no scans thing. My mammogram is scheduled for first week of October because beast doctor said she will use it as my new baseline post surgery. Then a PET scan in November, and probably an MRI in February. I feel very comfortable with that plan so if anything comes back they will catch it early. I am also going to talk to her about adding in some ultrasounds since that is what found my tumor in the first place.