Starting Chemo July 2012

Life and Ms sunshine, I am so sorry that you had to make the difficult decisions regarding your BF's -- life is full of shitty decisions that need to be made.

Hugs and healing to both of you.

Good morning dear friends. Am going to try to keep my gripping and whining to a minimum today. Try.

My beautiful 21 year old college senior will be home today. Part of her senior honors thesis is on breast cancer awareness campaigns-the overkill of the awareness and unavailability of screening for indigent care in smaller communities. I am so proud of her. She is working with a paramedic student and a nursing student at the university where I am dean of health (she is @ UNM). I may be sending redundant info (chemo brain)--but they have planned a fun family event with a run and events for children. The mammography van will be there offering screenings, etc, etc. All monies goes to the indigent fund. So proud of her. She is coming home today to work with the team this weekend, next weekend for some news and promo spots, with the event the last weekend of the month. The paramedic student took the idea when I talked to her about cost one day. So proud of each of them. For my daughter--this is her therapy. 

Hugs to each.  

Nat & PAEagles, for what it's worth I had swollen hands all through AC and it's finally let up.  My rings that are normally nearly falling off were too tight to wear, and my usually mild carpal tunnel symptoms got aggravated.   It got even worse when I was chugging Gatorade all day long.   If I'd had surgery already I'm sure I would have been assuming it was LE.

Well I'm relieved the Taxol is going OK so far.   I've had a tiny bit of leg bone pain and some tingles in my hands and feet but nothing major yet.  The biggest (pleasant) surprise was being able to drive the day after, and zero nausea.  I'm still napping a lot though.  My hot flashes actually seem improved, but I'm not sure if that's a coincidence.  It's a few degrees cooler in the house than it has been.  Last night I took a xanax before bed and actually slept through the night!  I'm so used to waking hours before dawn, I was confused when I woke up to light.  For a minute I thought I was waking from a daytime nap.

Wishing a pleasant weekend to everyone. 

Our starting chemo in July group has struggled. But--throughout we have had this group. As one who started alone (#*&%^&**@ walked out day of port placement and moved in with someone else--for any newbies) I am saddened to learn of the changes in relationships for others. While I have had my friends and children--it cannot be the same as a partner to lean on through the process. It is a lonely time for sure.

I am so hoping my counts are up so I can have Taxol #3 Wednesday. Will start Neupigen 24 hours after for 3 days each week to maintain counts. I hate the chemo--but hate missing it more. And--only 10 more weeks to go...of Taxol. Not even counting how many Herceptin. Then surgery. Then radiation. then....

Hair--or lack there of question. Have stubble. Actually--not really even stubble on the top of my head. No place else. About a month ago I shaved it and have stubble again. Anyone else? It itches. Do not think it is real hair--as eyelashes and eyebrows are falling out daily. Think it is just one more annoying thing about chemo and cancer.  

My mood really sucks. Thought it would get better as I adjusted or ?? Really just want to smack chipper people and people who complain about crap and people in general.

Wishing a non-bad mood day for all 

Dear lifeonitsside....even if he just turns out to be a good friend, his help might be important.  My DH is invaluable, but my good friends give me much love and support.  Maybe because we're all old...and have time to be supportive. I haven't had to ask anyone for help, but I know they are there for me.

Hey guys-

Sounds like my fellow July soldiers have been doing pretty well. I hope everyone continues to weather the storm, through the tears, aches and pains, and yes, laughs.

I've not been around in a while, because I've been busy and emotional as well. Not 'stay in bed' emotional just volatile and a 'bit crazy'. My poor wife has had to endure this all, but at least we are able to talk about it. Well, I am going into treatment # 5 of 6 on Oct 11 (this Thursday),and will see my wonderful Onc before the infusion for yet, another palpation. And of course in between my breast surgeon has asked to see me every 2 weeks to palpitate as well. In between it all, I got fed up with our Cable company and switched to another provider which has been great. Well, prior to the install appt, I had been doing regular cleaning around the house, and since my monthly allergy shots had to be suspended during chemo, I must have aggravated my bronchial tubes right into bronchitis. Bam-I spent the next 5-6 days caughing up a storm. On Oct 3 I went in for my CBC which was good, but I asked to see a doctor, because I was a little concerned that I was getting stick. And with weakened immune system already in place, I didn't want to get into any full blown upper respiratory infection, etc. Well, low and behold he diagnosed me with Bronchitis and prescribed a 5 day antibiotics treatment. The next 5 days I continued to run a temp, and since he gave me 1 refill, I decided to take it another 5 days. Over the weekend (I was sick all week, knocked to the ground), I finally turned the page. All I kept thinking was 'I don't want to skip my treatment, I gotta knock this thing out before Thursday). So, I did all I could-rest, liquids, tea, cough syrup. A whole separate fight. It was not fun....

Since it seems we're chatting quite a bit about hair, my hair is thickest at the bottom of my neck in the back of my head...a little weird. My wife says when I bend forward too fast to have her kiss my head, it's like kissing a porcupine. I have hard stubble all over my head, but only a few millimeters. Then random hairs that are a bit longer. I've also lost some eyelashes, looks a little weird, because mine are kind of long, and thick, like a camel, my wife says, affectionatly, so you can really see where they are missing, LOL.

So much love to you all-so many people experiencing such a range of emotion. I am always amazing how much this situation makes us all bounce from one extremity to another. I can't speak for anyone else, just as a serial planner, one of the hardest things for me has been to 'live one day at a time'. I was just telling a co-worker today, after I finally returned to work after the stupid bronchitis, that things like this do have a way of completely re-arranging your priorities in life. The truly important things are squeezed into focus, while the auxilliary things are suddenly minor and ousted to the periphery.....

I hope the next round goes well for everyone-may this, too, pass.....

Hello Ladies,

I know I've been gone for quite some time. I tried as much as I could to have a life offline, especially during the summer. Now the fall is here, and I've started to work again.

So today was a good day. it started with #7 of 12 taxol infusions and ended with the above piece going live. Hope you'll read the series and find something of service to you on your own journey. 

Much love,

CityFi 

CityFi: Great writing and greater spirit!  You're just the woman to kick cancer's @$$!

Ann, I'm so sorry that you are going what through you are, and I surely relate.  Doesn't it also feel like you then become responsible for taking care of other's feelings about YOUR illness? As hard as it was, I had to put my foot down when my mother would fuss about wanting to accompany me to chemo when we all knew that she could not handle it. So your dad asks - certainly because he cares and wants to be a good father - but then can't manage his upset which upsets YOU, and with all that you have on your mind - including all the fears you mentioned - you don't need "avoidable" upset.  *sigh*  Then if you're anything like me, you catch yourself feeling guilty about your anger and resentments, lol!  

I think what also makes it harder is that for folks to really understand, you have to play oncologist for them and break it all down first. Without the medical explanations, you can seem like you're just being pessimistic and the answer to that is the well-intended but unhelpful, "You're going to be fine." Really?  You know for sure when I'm the one going through this, and I don't. Can I get that notarized in writing? A receipt maybe? I know when I was first diagnosed I struggled with telling more people than necessary because I didn't want to be overwhelmed with 1,001 questions, some that I yet had the answers to. Especially, "What stage?" 

Come here and vent even if there's no response. We all have those days and come back and read even if we don't post. And it's better to get it down then keep it swirling in your head like a journal or diary.  My guess is that the board waned because this is definitely about the time that all of us are in the thick of chemo. Now that we know how we're responding to it, we're trying to manage SEs and/or have a life outside of cancer treatment. As each of us gets closer to the end, I bet there'll be an uptick of folks wanting to check in and report on progress and see how others are doing. 

Wishing you comfort and praying for "positive" explanations for concerning numbers. 

Thank you for reading, TAB55, Virginiab and teeballmom. This is a new kind of writing for me in the sense that I'm primarily a fiction author. While I aim to "tell the truth while spinning lies" and think there's a piece of me in all my characters, I'm really not in the practice of putting inserting my personal life into my work.  Literally putting my mind, body and spirit into my writing is very new and scary for me, but I think that's precisely why I had to do it. "Coming out" as woman experiencing breast cancer was essential to my healing. 

And because this is a particularly safe space, I'll share with you all one of the things that happened that day that I chose not to write about. There was an older gentleman in the chemo suite across from us who at one point dropped his glasses and phone so at one point Doc and T went to help him and that's how we got acquainted.  

When we were finished, T and I were waiting for Doc to use the bathroom, and the elderly man exited the other bathroom. In inquisitive and unfiltered T fashion, she went up to him and asked why he had the spots on his arm. He said, "Well, I'm in the same situation as your mom," referring to me. T did not correct him, and even though I just met her, I suspect that this was unusual. Doc had just rejoined us and had missed it, so I whispered, "He just referred to me has her mother, and she didn't correct him."

Doc said, "She never does that."  

And let's just say, Doc has a type. I've never seen her, but I'm almost sure that she looks something like me with respect to hair texture, skin color, etc. T definitely looks like she could be my daughter. And she acts like it, too. LOL! We're both give Doc a run for his money and keep him on his toes. ;-)  

boobzilla, you describe it perfectly when you distinguish from "stay in bed" emotional to just "volatile and a bit crazy" emotional. And I wonder if it's harder for loved ones to get the latter being a part of cancer treatment, too, because all they've heard about chemo makes them expect only the former. Like they could handle a to-the-bed depression but are at a loss with a general malaise. It too much resembles the proverbial pre-cancer bad mood that ordinarily would pass with whatever transitory thing that triggered it. But since it's really much deeper because the cause is an ongoing, well, they don't know what to do with us. 

Hi All- have been away for a few days, and am just catching up. I had the last of my Taxotere treatments on Monday, so it is only herceptin for a year. I am so thrilled!!! I have been asked to take part in a herceptin trial. They are trying to establish if 6 herceptin treatments are as effective as 12 herceptin treatments in preventing recurrence. I have turned them down, as I may be put in the 6 herceptin treatment group, and as they are not sure if 6 treatments are as effective as 12 I don't want to take the chance. It feels like a lot to ask of me, as I would potentially be putting my life on the line. I don't know why I am feeling guilty about turning them down, as it is a no brainer situation! What do you think?

Teeball - I am sorry to hear about your elderly patient having a reaction during your treatment. it must have been very upsetting for you.

Ann - Congratulations on your tumour shrinkage - that it terrific news!!! My Mom asks the same sort of things, but I try to remember it is only because she loves me so much. Try to change the subject, and ask him about himself. This usually works with my Mom and you don't want to lose contact with him. Family are so important at a time like this.

Life - I was so glad to see you are contacting your DBF again. He brings you a lot of joy - it comes through in everything you say about him. Even if he does not want a serious relationship at the moment - he makes you happy, and you need that right now. Things may change later, but take what he can give you at this moment in time and enjoy it!! 

Susan - I love what your daughter is doing for the transient population. What a useful and wonderful thing to do. You must be so proud of her. After every chemo my scalp itches like mad. Sweet almond oil helps a lot. Rub it in well - leave it on for a while, and then wash your bits of stubble. I still have a bit of stubble - thicker at the neck like Boobzilla, but after each chemo a little more stubble falls out . We go on holiday in a weeks time, and when I get back I am shaving it all off, so I can have the joy of seeing my peach fuzz appear! 

Boobzilla - sorry about your bronchitis - I am glad to hear you are a little better 

Take care all - have a good week. 

Thanks for understanding CitiFi.  Yes I've gotten the "you're going to be just fine" and "they're going to be able to contain this thing" and it's just not reassuring, knowing what we know.  Puts me in a position of either smiling and nodding, angered by their ignorance, or else educating them about the grim possibilities of recurrence and permanent SE's which I'd rather not be reminded of all the time.

Loved your articles by the way.  It's great you're able to keep working and doing different therapies that make you feel good. 

I've been absent for a few days. I have really been trying to find a young women's support group or one-on-one counselor to talk to and had nearly given up. After last week's "Yes/No - I'm sending your case to the Tumor Board" meeting with the radiation oncologist I definitely visited my dark place. Add to that more Pink Sh*t everywhere and several people saying "You're still doing chemo?" My external reply - a nod. My internal reply - Absolutely, isn't everyone trying it, dumbass? Yep, it's been a rough few days. Today I heard back from both a support group leader and a therapist. I am looking forward to attending sessions with both in the coming week.

Life I am so sorry to hear that you and your boyfriend have split up. I've said it before and I'll say it again - You are so strong - while it hurts right now, it may be for the best, especially if he cannot give you all the love that you most certainly deserve.

City I loved your article. What a terrific story and so brave of you to share. I agree that writing helps you heal. I've written a little since this began too.

Ann hugs, hugs, hugs - I know it is extremely difficult to be positive but boobzilla is on to something, positive thoughts will help with your healing

Boobzilla your honesty helps so many of us put things in perspective - thank you! I really hope your brother stops worry about how he's dealing with this and starts focusing more on you.

I hope everyone is having a good night. Hopefully, I hear from the radiation onc after the committee meets tomorrow to discuss my case. I will definitely post any updates. Plus, I have a check-up with the plastic surgeon on Thursday.  

I think we all need to meet and have margaritas....