August 2013 Chemo Sisters

Batcatlady: Hope you're well after that ER visit. Same for you LHL. The short-term disability plan is wise.



Is anyone else getting rads next after chemo?



LHL and hockeymommy: I agree with FMG and babs. I try to do whatever I'd usually do with my daughter or for her, ie I'm off to the PTA tomorrow and Back To School night Thurs. Within reason though, if I felt ill, exhausted or the MO said no I'd stay home, Regular precautions like hand sanitizer, hand washing, extra sunscreen when I'm outside, a jacket and my trusty beverage container which never leaves my side (except for washing) are a must.



I've changed my avatar to show one of my hat combos I wear when I go out. I'll be talking more about my headgear later, since Sharonanne I think you expressed some curiosity about options a while back.

I think I know what happened to my hot flashes . . . Last Saturday-Monday I was hot as heck + sweaty.

I am perimenpausal and started having a sketchy period before chemo.  I missed a period in February, got 2 in May the 9th + the 31st (this may have been for June) than not again until August 4th very, very light. 

After chemo I've been somewhat spotting a few times a day for a few days in a row.  Last Monday after the 2nd chemo the same thing happened again only a little heavier.  I called my GYN, so told me it's most likely my sketchy period.  She asked me a few questions and said she wasn't concerned.  She invited me in for a visit if I was concerned.  Did I mention that I have fibroids . . . big ones.

I realized when I don't have a so-called period or spotting the flashes are hot.  When the light spotting occurs I don't experience hot flashes.  Strange . . .

Is anyone else experiencing this?

One woman I know had a real period for 3 months straight while getting chemo, she had to get about 7 blood transfusions during her time of chemo.

Rest is not coming easy.  You'd think I'd be ready to pass out at 10p, after getting up @ 5:45 this morning and NO nap!

Where are the Melatonin???

I should probably wear gloves when washing dishes + lower the temperature of the water.  This morning I noticed slight peeling on my fingers.  Anyone else?

Sharon-Thanks for the kind words...with all we here are going thru we all need to hear some encouraging words. Some days you just can't help feeling ugly...the weight gain, frank-en boobs, and now being bald! I love my husband...he is a great man, but he's never been one for words. Living with a house of boys I don't hear many complements around here. I think you too said you raised a house of boys so maybe you know what I mean...or maybe you've been blessed with boys who know how important kind words are to a women. Unfortunately my father-in-law wasn't one to show that to my husband...though he is much kinder than his dad...and he hasn't really taught our sons how to complement a women. BTW Change of subject...I can't believe you are a great grandma...You age VERY well!

Naan-love the cat.

Shalimar- My hair hurts at night too when it rubs the pillow. I am not sure if its because of the chemo/hair falling out or because I have a buzz cut. At this point I am so ready for the chemo to finish it's job so I can rest peacefully at night.

Lighthouse and Hockeymom- today at my Doctors appointment I asked about going out. He said he would tell me if I couldn't. They all said to go on living life and enjoying it. Of course if I feel ill...don't go out. Be wise...don't hang out with a sick friend (cold or just getting over something serious). Outside should be fine anyways...as long as you keep your distance from anyone sick. I went car shopping with my oldest son two weeks ago when my counts were low, but I didn't go for the test drive or go into the building. It was just nice to get out.

lovewins- My doctor said today that it looks like last chemo all my problems came from the stuff to prevent side effects...the steroids, and nuelesta shot and nausea meds. He said since my counts are fine this week he is not going to give me a shot. I will be interested to see how much of my pain was from the shot vs if any was from chemo. I may have to get one next week though if my numbers are low. However I won't be on the steroid which I think made having the bone pain so much worse. He also reduced my steroids so I am hoping for that to help and for me not to now have problems that the steroids are there helping...I think one thing he said they help with is reducing fluid build up.

So far all is well no side effects tonight, except this weird thing that happened both times towards the end f my infusion. It starts with a headache...kind of like a brain freeze you'd get from ice cream. It then travels down to my sinus and stays there kind of tickling/iching. Lasts for a few hours after treatment. I am guessing I may have some allergy to the second drug. It seems fine now. Thanks for all the prayers!

So I finally figured out why I don't always see the photos...stupid me! You all look fantastic! Gavin's grandma...I don't believe how young you look...a grandma!

I've so far been lucky with SEs maybe because I don't have to have Neulasta which seems to be a pain for many of you. Maybe that's still to come for me.

I was feeling really positive and bubbly until the weekend then a trip out sent me crashing. Every where I went there seemed to be someone who came up and put their hand on me and murmured sympathetic words and looked sad, instead of saying hi, what great spring weather we're having and being normal. It coincided with my hair coming out. It's day 20 and I have about 50% left I think which is pretty amazing really. My hair has always been thin and fine, I thought it would have gone ages ago.

So tomorrow is Look Good Feel Better day followed by chemo#2. I dont want to go to LGFB now because I have a cold I think and I don't want to pass it to anyone else, but also I'm struggling with going out in public. Luckily I don't have to be at work this week. I've got tons of head gear that I like but if someone comes up and pats me on the arm again I cannot guarantee how I'll take it.

The other issue is the result of the port pain...it turns out that I have a nerve in my spine that is playing up because of my posture when I was trying to cope with the port. ( why didn't they put me on decent painkillers from the start then it would never have developed ) So my GP/MD actually listens and now I'm on heavy duty pain killers but have stopped them today because I don't want more constipators with the second round of chemo tomorrow. so I cannot do anything that involves looking down...like just about everything I want to do...reading, marking kids work, sewing, embroidering, gardening, cooking...I am so frustrated...then my husband trying to be helpful, spins the someone is worse off than you story. Which of course, I know but why is it they don't know when you need a hug instead of a rational discussion?

Well tomorrow I'll be wiped out by the chemo anyway...sorry to be bitching on ... But I keep thinking about the line I read somewhere when I first got diagnosed. ' having cancer is like a terrorist holding a gun to your head, saying I might kill you, then again I might not'...the difference is of course, it's going to go on for years like that...how do we get on after treatment is over, without always feeling the gun?

Sorry to be so gloomy...I'll snap out of it ...just had to say these things out loud.

Today I declare that as I live, move + have my being in Christ; He is free to live, move + express Himself through me.  God is moving through me today!

What do you declare of your life today!

Hello ladies:



As you know I don't post much, but enjoy reading your wonderful stories. This chemo is doing a number on me mentally, physically and emotionally. But god is good and is seeing me through all the ups and downs. I will say this 2nd round has been a bit easier, if you can say having a migraine for 5 day instead of ten, having naseau for ten days instead of 14, muscle pain well it never goes away. I feel like a walking pharmacy, but take one day at a time. Glad you ladies are her and keep me laughing with some of your stories. We all are doing well with this crap we have been dealt. Stay strong and positive..... We all got this covered!!!!

Togetherness - I feel your pain about being a walking pharmacy.  I have only ever had prescriptions for my migraines (and an occasional antibiotic for being sick) and now all of the sudden I am taking nausea meds, steroids, pain pills, stool softeners, antibiotics, etc.  My poor system is so screwed up and I always feel like I'm in a fog.  I'm sorry about the migraines and nausea.  I only had two days of nausea but the migraine sent me to the ER!  So I can definitely relate.  They gave me Emend for this time so I'm hoping that helps me keep the nausea away completely.

itsmyjob - I'm so sorry to hear about your sister's disheartening journey.  How rough that you both have been through this.  I don't have a sister, but my best friend of 30 years just went through this same exact journey last year.  She was 39 at diagnosis, I am 40.  We are both BRCA+ and both stage 3, both had chemo before surgery, both bilateral mastectomy, etc.  It's eerie.

Anyway, on the reconstruction subject... I am hoping to go for reconstruction but haven't even met with a plastic surgeon to see what the best options are for me.  My friend, though, did not have any.  She said because of where her cancer was (deep in her chest wall) and being BRCA positive, they didn't recommend it, because if she had a recurrance it might be hard to detect.  She said that even without that recommendation, she might have opted NOT to do reconstruction anyway.  She said after all the chemo and surgery and radiation, the thought of just another huge medical procedure was too much.  She told me that 90% of the time she's completely comfortable with herself as is (she's married and a mother of 2, just like me).  So.... just from the perspective of someone who did NOT do any reconstruction, right now she's content.

So many people with breast cancer, just difficult. However on the bright side, it is good to have so many treatment options and the ability to choose.



So tired now. How annoying; first part of treatment cycle I'm sleepless, second half I want to sleep all day. My red blood cell count is slightly low so that contributes to fatigue. I'm taking iron now and probably breaking my ditch red meat vow for a while.



Sharonanne, I asked and radiation typically begins one month after chemo (for those of us that had a lumpectomy). I have to call the radiation oncologist this week for a consult. So my radiation would begin in November. Oh the holidays will wipe me out.



LHL and itsmyjob, I am considering reconstruction too even though I didn't have a mastectomy because the 2 lumpectomies I had left me weirdly lopsided. My issue is that since I'll have radiation too I'll have to wait to see what, if any, changes rads will cause. Sigh. I may not do this because I may be so fed up with procedures I won't be able to take any more. Well I wait a year after rads are finished to decide anyway; 2015!

Good morning ladies, Gashgold that was so sweet of you to say that, my wrinkles miraculously hid from the camera😄I seems to me that our lives can be stressful enough and then you add breast or any kind of cancer to that and things just seem to spin out of control. I would like to tell you briefly a little about my last couple of years. In June of 2012 my mother-in-law was Dx with BC, at the time I had reduced my clientele at the salon quite a bit to just 3 days a week. My father-in-law was heading into end stage COPD and CHF, so I decided to take some off to take her 3 hours away( where I now go) for her surgeries and radiation. We go through that and she is fine, I tried to go back to work a couple of days a week, lets face it at almost 50 I was not as gung-ho about re-building clientele as I was at 25. After several months I decided the out go was not worth the income so the first of May I retired and planed to look for an easy part time office job or something. Did my well woman yearly exam and was called back on 5/29 for an US and the next day, which was Gavin's 1st b-day for the Bx and the radiologist told me he thought it would come back positive, so I prepaired my self and my husband but we would wait for pathology before we jumped to any conclusion. Fri the 31 radiologist calls and confirms Dx advises to call PCP and get referral to BS, I knew who I would see based on our experience the previous summer. Saturday the 1st of June we where out all day with the kids and came home to our mini-doxie and our Shu-tzu badly bitten. We have a 9 year Old shepherd mix who is a big mother hen and raised those little girls. My daughters Shepard mix pup and my beloved rescue jack Russell terrior mix who was shy of 3 years old and the JRT had been getting more and more possessive of things and had snapped at the doxie and bit her once before and after both girls needed surgery to repaire the injuries we had to make the tough decision to have Rowen the JRT put to sleep so that no one got hurt again. I refer to that as the weekend from HELL. When we saw those girls bloody and scared to death I about had a nervous breakdown at that point. I have been very emotional since then I miss Rowen terribly, he was such a sweet boy to us, but to lose my career after 25 years, get Dx with BC, have two little dogs hurt bad and lose my rowen all in 4 days has been very hard for me to deal with mentally and emotionally. I was sad yesterday and I told my Husband I feel so lost after all that then losing my boobs and now my hair, I have always been a believer but for these last several months I am struggling to stay positive. The weather is beautiful and I love to garden so I am going to try some soul restoration and get in my yard, do what I can when I can and keep looking for the silver lining in all of this. Oh yea 1 more thing the plan was that I would watch Gavin a couple day's a week but between surgery and then right into chemo that is gone too so my Mother-in-law is watching him until I can, so I feel like I am missing a lot of his growing up already. Sorry to ramble but this is a good place to vent and maybe it will help because I know my husband does not like to see me so sad.

Good luck to everyone having treatment today or this week and my thoughts and prayers are with you for minimal SE'S.

Gashgold,  My sister knew it was experimental, however the plastic surgeon gave her the impression that it would only be 3 to 4 graphs over the course of 6 to 8 months.  Coupled with some extra time for healing issues and some life events that put her reconstruction plan on the back burner for a couple weeks here and there its been just so much more of a process than she initially thought.  When I asked she said despite what she's been through, she'd probably opt to to it again, its just a matter now if she wants to stop short with divots that are still present.  I hadn't been tested until after diagnosed for the BRCA gene, it was something I had planned to talk to my doctor about since my sister had it. I actually went to the doctor with what i thought was a spiderbite on my breast, he ordered antibiotics and a baseline mammogram...turns out that the timing was perfect and the ibc was diagnosed very quickly. The genetics specialist said they cannot tell which side of the family the mutation came from unless our parents got tested.  My mother's job requires a physical each year and her insurance company has included it as one of mandatory tests, so we will know for sure after the first of the year.  Neither my sister or i have daughters, but I do have a son and I handed over the results to him for the future.  He needs to be aware of an increased chance in breast and prostrate cancer for himself and his children.  I can see a world very soon when the genetic testing will be routine, and yes, had i known I would have taken a more active role in my health.

Lisa, you do have a tough decision, but you will have time to think about it and make the best choice for you.  I really think what you described is what I am feeling, I want to get on with living and I dont want to make any extra trips the hospital than necessary.

Lighthouselady, a friend for 30 years is a sister!  That's amazing the you two have so much to share and can support each other.  My sister was diagnosed when she was 40 and I at 45, I depend on her for so much.  She dove into research and wanted to know all the facts, I really have taken a more passive role, just wanting to know what is pertinent today, completely embracing the one day at a time mentality.  The hospital I go to has an online mychart option when you can access test results, procedure notes, labs, etc.  so I gave her and my mother the log in info.  They will warn me of side effects of meds, procedures, chemo and tell me questions to ask.  So I have been so fortunate to have them both scouring for info for me, I told them they are my research assistant minions.

Itsmyjob: What a great title! Research assistant minion!



Gashgold: I have already had 2 lumpectomies to remove the tumor. Chemo is now (of course) and radiation follows. After that, I may or may not have plastic surgery for reconstruction, which would end up with implants (I might as well have had a mastectomy, huh?). But I may be just worn out from all these procedures and side effects, to actually want elective surgery.

Itsmyjob, That hairy leg deal doesn't make sense, does it? I have hair on my toe! I'm going to glue it to my head.

mankato, You probably feel like a pin cushion by now, don't you? Ghee whiz. I hope I don't have to do that. I don't think I could give myself a shot.

Awww, Gashgold,  I'm sorry you're so down right now. Your hobbies are the same as mine. No wonder we cliqued. I bought a crochet book yesterday with hat patterns. I bought very thick, soft yarn in an ecru color. Hope to get started on that today. I'll be praying for you that your spirits will rise and you'll feel better soon. It's hard to get out of that mode once in it. I know from experience.

GavinsGM, You and Gashgold need some big hugs or something. We're going to have to think of a way to bring you back up. My husband always told our boys that life is like the ocean; you get up on top of a crest and you look around and all you see are troughs all around. You go up and down like a wave. He is basically right, so look up to the top of the wave and start swimming. You have been throug a lot in such a short time. Take some deep breaths. It will be better soon.

Man, there are a lot of people feeling down this week. When you're down, there's only one way to go and that's up.

My 2nd chemo was changed to Tuesday from Monday. My doctor had a family emergency and will be out of town. I'm assigned to another doctor, which scares me a little. I had so many questions to ask next week. Oh well.

Get well you guys.

Hi ladies, someday I will figure out how to read everyone's posts. I've had a rough couple of days. Mouth sores, and uti. Hot flashes like crazy. My sweet Husband. We had our 12th wedding anniversary, I felt so down, he is such a sweetie. He cleaned the house for me. He also went to the store and bought a couple anniversary cards and signed them to us from us. Went to dr today, she gave me antibiotic, and another mouth rinse, said if mouth sores are not better they will have to postpone next treatment. Ughhh!!!! Lets hope this works. Have a blesse day.



Sue

Gashgold, thank you for sharing about your JRT, they are so sweet but like you said One person dogs, he was even starting to grow when my husband would kiss me goodby in the morning. I think he snapped with having the pup around, we demolished our backyard so that was all different and I don't think he did change well, plus I wonder if maybe he smelled the cancer in me before we even knew and was just getting overprotective? But I have decided to keep him in my heart but focus on my 9 yr old shepherd while we still have him and enjoy the other dog's God knows we have plenty. I do hope you are feeling better soon, this stuff has the goofiest SE'S and they seem to morph from one day to the next. I got out and puttered in my yard and that made me feel better and like your daughter, my daughter is worried about me taking on to much with Gavin as she say's" Mom I want you here for the long haul for him and more to come, so just get better" I agree.

Cutiecool,I sure hope you start to feel better soon, these SE'S are crazy, if the cancer does not get us the SE'S will make us cookoo😝I did not get mouth sore the 1st time but I did this time and I got shingles the 1st round but was on top of them this time. We really need to take care of ourselves mind,body and spirit.

I hope everyone else is having a nice day so far.



Shary🌻🍂