You may as well laugh at yourself.

Everyone else is.

So, the ongoing saga of my wrist splints aka carpal tunnel versus neuropathy.  The first night I wore them I had no numbness at all, the second night just a bit in my pinky.  Thursday I had a bad day.. just felt like crap in general, spent most of the afternoon and evening on the couch, so by the time I went to bed my back was killing me, I wasn’t tired after dozing off and on all day and I tossed and turned for hours.  Around 3 a.m. I woke up and my hands were completely numb.  I couldn’t feel them at all. And I had to pee.  I sat there in a panic flailing my left hand to get the blood circulating while ripping at the velcro straps of my right hand splint with my teeth.  I finally managed to get them off and get the feeling back in my hands, went to the bathroom and then came back to bed and lay there panicking that the chemo would be discontinued now.  I got myself all worked up Image.  I thought I may as cancel the radiation too, have a bilateral mastectomy and be done with it. (Now mind you, at no point in time was I ever told I had to have chemo to save my life. It was more of an insurance against recurrence. I could have opted for just radiation after surgery.   I have had 4 rounds of dose dense AC, and 7 of 12 rounds of Taxol.  That’s a whole lot of chemo. But.. while I was initially more afraid of the chemo than the cancer, now I am afraid to stop.)   All of these thoughts kept me awake and Friday I was dragging all day.  I went to bed Friday night and while putting on my splints, realized I had worn them backwards the night before, essentially cutting off the circulation to my hands. Honestly, I should never be left alone with devices of any kind.  I am happy to report that Friday and Saturday night I had no numbness at all.  The splints do go flying in the wee hours when a hot flash hits and I can’t stand them, but they are working.  When my oncologist asks how they are working out I will say “Fine” and leave it at that. If she wants to know what’s going on with me, she can read my blog. I want to continue the treatment if I can, but if she feels I’ve had enough that’s cool too. I’m all zen and shit about the whole thing now.

Today is the end of phase one of my chemotherapy treatment.

Today is the last in a series of four rounds of Adriamycin and Cytoxan. I had been looking forward to it as the halfway point and thought I would be happier to see the day come. But instead I focus on the fact that after a 3 week hiatus I am onto phase two.. weekly Taxol for 12 weeks. And then I still won’t be done, it will be onto radiation.  On the AC I had two good weeks out of three the first two rounds. This last round honestly left me feeling pretty exhausted right through. I’ve now developed allergies (never been a problem in the past) where my nose runs and my eyes weep constantly.  Claritin doesn’t help and I’m hoping my Oncologist can recommend something else today.  We have a lot of family events coming up in the spring – birthdays, one daughter graduating college, the other grad school, visits from family. I had big plans to celebrate these milestones, but not knowing how I will feel on weekly chemo, things are kind of hanging and that makes me feel unsettled. 

When I started journaling about this whole thing I was determined to keep it light and upbeat but I’ve come to understand how disingenuous that is.  No one can be positive 100% of the time, no one should feel they have to be. Of course I could choose to only blog when I am feeling positive, but I think more people can relate to the fact that in all aspects of life there are good days and really, really bad days and this fact is no less so when facing a life threatening disease, no matter how brave you want to appear to others (or how brave you think others need for you to appear). And I also think when someone comes along and reads these blogs they need to know that their negative feelings are real and valid and normal! And so is gallows humor if that’s what helps. Most days I can be depended on to make a really tasteless comment about cancer that will either crack someone up or completely disgust them. When it’s the former I appreciate their understanding of my comedic brilliance. When it’s the latter I channel my inner honey badger cuz honey badger don’t give a sh-t!

Today I am going to try and channel my inner glowworm and spread some sunshine.

50/50

Not the movie, though I did end up seeing that and it was okay. Not the tear jerker I expected. Or maybe I’ve toughened up over the last few months. Could be. What I’m talking about are my odds of finding the write right word when I’m trying to get a thought out. I’ve always had a way with backward talking (I’m the only person I know with myface and spacebook accounts) but I always catch myself as the wrong word is slipping out. Lately who the hell knows what I’ve been babbling about?  Chemo brain?  I’m not sure if that’s even a real thing (as in medically acknowledged – trust me, I know it’s real!)  or an urban legend.   Another good term  is brain fog.  I started another blog and I’m not sure why. I got as far as naming it. Now I have to keep checking to make sure I’m in this one when I post something.  I think I was going to blog about ebay.  It’s becoming a pita to have to keep switching over and that one remains blank.  I could probably combine them, but that would take effort. Bah.  I’ll get to it.  In the meantime it’s taking me all day to accomplish the smallest thing. Like laundry. Reading is nearly impossible and watching a television program sometimes takes more than one time through if I care enough to follow the storyline.   Today I grocery shopped and was quite impressed that I remembered (almost) everything and with no list!  Then I realized I left the house with no eyebrows. FML.

Just when I was in danger of taking myself seriously..

I decided I needed to get back into an exercise program. I’ve.. umm.. slipped since my diagnosis. As in my give a shit broke and it wasn’t on the short list for repair.   I started with my stationary bike. 5 minutes in decided it’s still boring as hell. Moved on to weights.. bah.. so I decided to pull out the weighted hula hoop. When I first bought it I nearly killed myself. True story.  Let’s just say Grace is not my middle name and leave it at that. But.. last summer I gave it another go and got pretty good at it. Well, for me.  When I was diagnosed I decided I shouldn’t do it any more. Don’t ask me why. I’m pretty sure it’s not possible to actually “bust a lump” though I have threatened to. So I pulled it out, put it back together and gave it a whirl.  I was hooping along, feeling pretty good, and realized I was standing in front of my large picture window, sans head covering.  I got the giggles and that was that.. hard to hoop when you’re laughing.   I’ll leave it out where I’m sure to see it (or trip over it) and get back to daily use.  It’s fun and believe it or not gives a pretty good work out!

 

My Journey To Being A Breast Cancer Survivor

I am 49 years old, married with 3 grown children, 2 semi-psychotic dogs and 2 lazy orange cats. On 10/30/11 I discovered a lump in my right breast and was diagnosed with Stage 2 invasive ductal carcinoma. Breast Cancer.  I have had surgery and am about to begin chemotherapy, followed by radiation and estrogen suppression. I try to find humor in most situations and there have been some cringe worthy and down right funny moments over the past 2 months. I want to share my journey to being a cancer survivor.

I am going to catch up to today, 12/20/11 … one week from my first chemo treatment.

On Sunday evening, 10/30/11  I discovered a lump in my right breast while showering. I didn’t mention it to my husband, but posted on a message board that I frequent that I was “freaking out” a little.  My friends all assured me it was probably nothing, maybe even a “fatty” tumor but encouraged me to see my doctor first thing Monday morning.  Over coffee I casually mentioned that I was going to see my general practitioner because I had found a lump. I was sure it was just a cyst at this point. It literally appeared over night.  I was seen that afternoon and she agreed with my assessment. It looked, felt and acted like a cyst.  Just to be sure I was scheduled for an ultrasound and mammogram (my last one was 12/09 and I had been told every 2 years was sufficient).  The techs asked why I was here and I said to verify I had a cyst. They said nothing to dissuade me from that.  The radiologist read the ultrasound after I was told to dress and sent the tech in for more views, this time of the axillary area. She asked again when my last mammogram was and chided me for waiting.  I went home and waited.  That afternoon my doctor called me and said it was not a cyst after all, but a firm mass and I was scheduled to see a surgeon the next morning.

My husband and I met with the surgeon and after an examination he biopsied the lump.  He casually mentioned if he didn’t get enough of a sample, the next step would be an excisional biopsy in the OR.  Fine by me. I wanted it out.   He said I would have results the next afternoon and finally did call late in the day to let me know there were no results, but if I did need an additional biopsy then it would be done with ultrasound guidance.  Monday I got the call that another biopsy was needed. The sample was “suspicious” but insufficient. I knew then that it was cancer, but had to wait for the official word. The secretary called with an appointment for that Thursday. I nearly begged to be seen sooner, even if that meant the OR. She talked to the doctor and called back to say no, he would not take me to the OR without this biopsy in case it was “something” and they needed to do more.  The words “something” and “anything” were used a lot. I wanted to point out that I was well aware what we were looking for and it was okay to use the word cancer.   I resisted the urge.  Knowing how anxious I was the secretary offered to see if she could get me in sooner at another facility.  I got a call that afternoon from the cancer center and was scheduled the next day.   The breast care coordinator met me at the hospital and held my hand through the very painful biopsy. We both pretended we didn’t know it was cancer.  This was Tuesday. Thursday afternoon I got the call.  I was relieved to hear the words and anxious to move forward with treatment.

I met with my surgeon, husband and mother at the cancer center the next morning along with another breast care coordinator and was given a lot of information to digest. Too much really.   My mother and husband were supposed to be my  extra ears, but I think I actually heard and grasped more than they did. I had already come to terms with having cancer. Or so I thought.  As it turns out this is a work in progress.

Throughout this process I had told my husband, parents and sister, but not our children and I struggled over that.  Our son is living in another state and traveling for work. Our daughters are in Grad School and College.  I didn’t want them to have to deal with this until we knew exactly what we were dealing with. Calling them was very hard and I broke down for the first time. Our son wanted to come home and started looking for flights.  Our oldest daughter  headed home from Boston that night. The youngest came the next day.  Having them home was a nice distraction and while we did talk about the cancer, we didn’t dwell on it.  We went to dinner and a movie, laughed, and just hung out. At one point they said I was so upset when I called them “we thought one of the dogs had died”. So glad it was nothing that terrible.

Since my diagnosis I have met with Medical and Radiation Oncology to discuss options, have had an MRI that showed only the lump we were already aware of, have had surgery, oncology teaching, and something called a MUGA scan to see if my heart is healthy before beginning treatments.  The MRI results meant I could have a lumpectomy (or breast conservation surgery or partial mastectomy.. take your pick).  I had decided if mastectomy was needed I wanted both breasts taken, so this was good news and I was ready for some. I could have opted for radiation only after the surgery, but because the cancer is hormone receptive and because micro metastasis was found in the sentinel lymph node, I am going for broke. I will have chemo for 6+ months, followed by radiation and then Tamoxifen for 5 years.

I don’t know how I will feel with the chemo, I do know I will lose my hair and will likely be tired. Beyond that I am going to take each day as it comes. I’m as prepared mentally and physically as I can be.  I can cry over losing my hair or be grateful I got to keep my breasts. I choose gratitude.  I’ve bought wigs, hats and scarves and my on line friends sent me a box with hats and scarves from all over the country.  It came on a day when I really needed a smile.  I will refer to them as Daisies when I  mention them in this blog. They are the best group of friends I’ve never met, giving so much love and support it humbles me. I get emotional at strange times.. like while talking with a cousin at Walmart about the holidays (but to be honest Walmart always makes me want to cry). When meeting with the doctors I feel very focused and confident that I am getting the best advice and medical care I can.  I sometimes wonder if they think I am in denial because I don’t get emotional during those meetings.  It’s not something I can turn on and off.. I feel what I’m feeling and move on.   You would think this would be a tough time of year, but the holidays are busy and I have no time to dwell.  I’ve had one “bad” day when I had to meet with my surgeon, get my hair cut and see the dentist with plenty of time in between appointments but not enough to do anything productive. It was a long day. Getting my hair cut bothered me far more than I expected.  Discussing breast cancer with my dentist was just surreal, but dental care has to be attended to before starting chemo. When I finally got home I had a headache, a super short haircut and wanted to have a good cry.  I told my daughter and husband if one more person I barely know looks at me with tears in their eyes and hugs me I am having thorns surgically implanted.  I think I could probably do that when I have my port a cath removed.  We’ll have to see if it’s covered by Blue Cross.

My family and friends have been supportive and have (mostly unintentionally) provided me with a lot of laughs. I talk freely about my diagnosis and treatment because I don’t want my kids to be afraid of cancer. There is a family history on both sides and they need to see it is not a death sentence and when life hands you lemons you make lemonade.  Well that’s what I want them to do. I’m buying some vodka and drinking until the lemons are gone.

In October 2012, I will turn 50 and plan to be cancer free. I am getting a tattoo to celebrate.