50/50

Posted on by mainelyhopeful

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.

Shameless laziness

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This is the weekend following my third infusion of the AC part of my treatment. As before, I haven’t had any terrible side effects but I am exhausted. Bone tired.  I know I would have energy if I attempted to actually do something, but I feel like just giving into it, so I am. I am ignoring my little business, other than answering emails and packaging up orders. No new listings, no sales.  I am ignoring the piles of tax receipts (really.. would the IRS come down on a CANCER patient if I’m late this year?) and trying to decide if any of my cancer related expenses are legitimate write offs.  Yep..back on ignore.  I should bundle up and get outside. I should exercise. I should clean, cook or organize something. I know I would feel better and probably sleep better if I did.  Instead I will play a few more games of pogo yahtzee, cruise the message boards, catch up on the blogs that I follow and if I get really ambitious, shower and change into a clean pair of pajamas.  This afternoon I will curl up under a quilt and watch the remainder of season one of Shameless with William H. Macy. This is a Showtime series about a raging alcoholic and his offspring.  He will do anything for a drink or a fast buck. In one episode he thought he had testicular cancer and shows up at a breast cancer support group, where all the women were bald.  It  was hilarious, as is much of the show. Even when it should be uncomfortable or sad it manages to be funny.  At least to me and my exhausted/chemo addled brain.   One more day of mindless, Shameless, inactivity and then I’m going to show some ambition. Or not.  I should probably work in a nap at some point…

Yesterday was the relay for chemo

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And I was the baton. My mom brings me for my treatments every 3 weeks and soon that will increase to every week.  The cancer center is 30 minutes from my house but only 15 from hers. My house is also 15 minutes from her’s, but in the opposite direction. Normally she picks me up making it a 45 minute trip for her. She’s happy to do it but I feel kind of bad, especially in bad weather.  Yesterday my dad collected me, dropped me at mom’s and she took me to the center. Later we went back to her place where my husband picked me up after work. I’m happy to report no one dropped the baton and we were even fed and got to visit with my sister and her significant other!  It was a nice day in spite of the reason for it.

Chemotherapy went well, blood work looked good and as usual the nurses were great.  I had a new one this round. She was very efficient but joked around and the time flew right by. Though this was my 3rd treatment it was the first time I was actually in a chemo bay. I had a nice corner unit that was warm and sunny, a comfortable recliner and television. I had my “chemo bag” with a few comforts from home and a novel. Oh I should mention, not everyone was comfortable. My mom kept sliding off the poorly designed couch and was finally given a straight chair to prop her legs on.  I was teasing her it’s because she’s so short, but that couch did look pretty uncomfortable. I offered her the recliner, but for some reason no one ever takes me up on that.    Though the bays have a little privacy in the way of curtains you can hear what’s going on around you. One lady started walking from bay to bay, wheeling her infusion pump along, asking people about their diagnoses and treatment plans and going into great detail about hers. Mercifully she ran out of steam before reaching me.  There was a bit of moaning and complaining going on and you didn’t have to look around to know it was coming from the men.  My nurse said that’s usually the case and we started chatting how men generally do not take illness and pain quite as..umm.. stoicly as women do, which prompted this little joke from her:

A husband and wife presented to the hospital in labor. Once settled in they were told about a new experimental option where a percentage of labor pain could be transferred to the father of the baby allowing him to share in the experience while making it a bit easier on the mother. They both agreed. With the next big contraction he got 25% of the pain and exclaimed “That was nothing”, so they upped it to 50% for the next one.  He still insisted it wasn’t bad at all and was starting to wonder what all the fuss was about. Finally it was upped to 75%.  The baby was born, mother was happy with the small amount of pain and her husband was still amazed at how easy it was.  Later when he returned home he found the mailman dead on the porch.  HA!

I did end up fessing up to only taking half the prescribed dosage of the steroid following my last infusion. It wasn’t deliberate and I’m still not sure how I managed to mess it up, but I didn’t have that big steroid crash that left me feeling so bad the first time around, nor did I have the terrible acne that was attributed to the steroid. My appetite didn’t rage out of control and I slept well. I was prepared for a lecture and a list of reasons I had to take the higher dose, but am happy to report I can remain on the smaller one.  Any time I can take less of any medication, I’m all over it, but especially this.  I like to call it Forrest Gumping when someone in the family does something kind of boneheaded but it works out to their advantage.  So this week I am proud to say I Forrest Gumped my way into less medication and less side effects. Chocolate anyone?

If you are a fan of irony

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I was reading a blog this morning by keepthecalm, where she mentions the laundry list of drugs she is on and I had to comment.  We spend a life time avoiding cancer causing poisons.  Stay out of the sun, don’t eat foods with tons of additives, watch what you put in your body and on your body, eat organic, load up on antioxidants, etc. etc. You would have to live under a rock to not know all the things that cause cancer.  Yet, you get cancer anyway. You do all the right things, you try to eat right and exercise, get plenty of rest, and either family genetics or just bad luck sneak up on you and bite you on the ass. Some things you just can’t predict, avoid or outrun.  The irony is in the cure.  To combat the cancer you voluntarily allow doctors to pump you full of poisons on a regular basis for months. You lie still while they blast you with (cancer causing) radiation, you subject yourself  to MRIs, xrays and full body scans.. more radiation,  more over a few months period than many people have in a lifetime. You read the short and long term side effects of the medications and find out that many cause cancer. Yup.. I will cure my breast cancer, but now I’m at a higher risk for uterine and ovarian cancer.  My previously healthy heart may be weakened by the chemotherapy, I could have long term numbness of the hands and feet. Yet what real choice do I or any of us have?  Better to kill the devil we know than worry about the one that may or may not rear it’s ugly head down the road. And if it does, we will use more poisons to kill that one and worry about the long term effects of those.

One last thought on the Komen/Planned Parenthood brouhaha

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It’s not often you get to use the word brouhaha in a sentence.

As a current breast cancer patient I am sure I’m benefitting from Susan G. Komen, so I have been feeling a bit hypocritical about my rants over the past couple of days. I’m not flipflopping on my position, however.  I still feel they were wrong and I’m still happy that Planned Parenthood got so much support in response.  I’m still not sure how wrapping cancer up in a pretty pink bow helps anyone and I felt that way long before my own diagnosis.

If using pink kitchen gadgets and festooning yourself in pink ribbons makes you feel like you are doing something, that’s great.  If a small portion of what you spend on those items actually goes into breast cancer research, even better. Pink handguns?  really?

I’ve never understood how packaging artery clogging fried chicken in pink buckets and wrapping products made with cancer causing chemicals in pink bubble wrap exactly helped breast cancer patients.  I bet it did help the companies who directly or indirectly cause cancer feel better about themselves (and make a lot of money off a public who can’t seem to see beyond the pink). I am not disputing the Susan Komen foundation has done a lot for breast cancer awareness.  Have they done a lot to find a cure?  I have no idea. My cynical side tells me there is no money in a cure.

If anything this whole cluster has reminded me to look really carefully at where funds go (and don’t go) before donating to any organization based on an emotional reaction.  That’s not a bad thing.

And in breaking news…

Posted on by mainelyhopeful

Susan G Komen has reversed their decision to defund Planned Parenthood. That is really good news and kudos to all that stood up for Planned Parenthood, the top officials at SGK who resigned, the senators who called on them to put politics aside and do the right thing, the bloggers, and everyone who lit up facebook and twitter to spread the word.  It pays to make your voice heard.  What’s not so good news is the scrutiny they have put themselves under, not to mention the distrust that many now feel toward them.  Some betrayals are hard to get over and I don’t think they will be able to pinkwash this anytime soon.

Today I played the cancer card

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I got one of those annoying phone calls from an obnoxious telemarketer excitely telling me I had WON. He told me to grab a pen and I dutifully pretended to. Then he blathered on and on about my prizes while I filed my nails.  Finally.. the rub. I had to come (with my husband) to claim my prize and sit through a quick demonstration.  Now normally I cut these jokers off at the pass but I let this kid go through the whole spiel. And then I said “Oh next week? I won’t be able to make it. I’ll be receiving cancer treatments.  The week after? Sorry, I’ll probably be too sick”.  Awkward silence.  “Matt? are you still there?”   click.

I’m easily amused these days.

No more pink ribbons for me.

Posted on by mainelyhopeful

My new gravatar depicts perfectly how I felt when I read the following blog last night http://ihavebreastcancerblog.wordpress.com/2012/01/31/shame-shame-shame-on-susan-g-komen/  and how angry I still feel with the Susan G Komen foundation.  While I’ve never been a fan of the ribbon, I have been a fan of any organization that works hard to raise money for cancer research and supports early detection screenings. Not just breast cancer, but for all cancer.  However, no cancer seems to get as much press as breast cancer.  Not even children’s cancer and that has always troubled me.  When October rolls around and the whole world turns pink I wonder if people affected by other types of cancer feel any resentment? I think I would in their shoes.  But I digress.. the reason for this rant is the fact that the foundation, who has been providing funding to Planned Parenthood, has pulled that funding based on the personal ideology of their new VP of public policy, a one Karen Handel who actually once ran for Governor of Georgia on a platform of defunding Planned Parenthood. I have to wonder if she took this job soley to fulfill her own twisted agenda.  And I also have to wonder why the rest of the organization is going along with it. The monies given to Planned Parenthood by SGK were for early breast cancer detection. Not for abortions. Not for birth control. But to provide women who might otherwise have no way to get it,  breast cancer screening.  I don’t care what your political or religious views are and I won’t bore you with mine, but I am sick to death of women’s healthcare being held hostage by the rantings of extremists. Conservatives don’t want the government to pay for healthcare, yet they want to dictate how nonprofits handle their funding?   It’s crazy making.   In the future when asked to sponsor someone in the “walk for a cure” I will politely decline and make a donation to Planned Parenthood instead.  Join me?

And now I am putting to rest my ribbon. I can support breast cancer research without festooning myself and my house in pink ribbons.  You can too.

Look good, feel better? Not so much.

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Today I went to the Cancer Center to participate in the Look Good, Feel Better program. First, let me start by praising the program and the volunteers.  The volunteers give freely and generously of their time and were so friendly and upbeat.  They gave skin care and make up demonstrations.  (Apparently I have been doing it wrong for 35 + years). They even cut and styled two wigs.  We all left with make up and skin care products worth well over $200.00, donated by top brands. So what’s the problem you ask?  I went into this feeling pretty good.  When I looked around my heart kind of sank. Many of the other women looked like.. well… cancer patients.  Maybe I’m delusional and I do, too, but I really don’t think so.  And then, as women do, everyone started chatting.  There were the usual pleasantries, but a lot of talk of diagnoses, treatment and prognosis.  Not much of it was very positive. One lady asked me how I dealt with depression and I answered honestly that I haven’t experienced any (yet?).  She looked kind of skeptical.   Before we left one woman asked if I attended the support groups at the center.  They are held one Wednesday evening a month and I had thought about maybe going in the spring.  I’m not fond of driving all that way in the winter, at night.  Now, I’m rethinking that. Maybe I’m the world’s most selfish breast cancer patient but if today was any indication of what those meetings would be like, I cannot see myself voluntarily sitting through them.  I just can’t surround myself with cancer and sadness, depression and anger.  I was told if I ever have blood drawn or go to the ER to be sure to identify myself as a cancer patient and I kind of bristled at that.  Yes. I have cancer. I also have green eyes, a tendency to migraines and an irreverent sense of humor. None of those things on their own define me.  I refuse to be defined by a temporary medical condition and I don’t want to be around people who define themselves that way.  On the other hand.. as soon as I started this blog, I immediately searched for other blogs about breast cancer, chemotherapy, women with cancer.. and I follow several.  Not all are cheerful every day, but all make me smile or comment. Most of the bloggers that I follow are hopeful and see the humor in the same things I do.  Some are very spiritual and I find comfort in reading their words.  Some are brutally honest about not so great medical results, but not one has ever left me feeling so dark and sad as that meeting today. I can’t explain it but then I’ve never claimed to make sense.

I don’t know what I expected to get out of today. It seemed kind of rude to turn down such a generous offer and I thought it might be fun. Some of it was, but I left carrying the little red makeup bag that identified me as a cancer patient in case anyone needed clarification, a headache and a lump in my throat. And my wig was choking me.

The magic of ordinary days

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This morning it looked like a fairyland outside. We had rain yesterday, along with snow and some sleet. This morning the trees were covered with ice and the sun was shining.

Too nice to stay put, so we went out for lunch (I had a gloriously greasy burger and fries without the usual side of guilt), did some shopping then went to see Liam Neeson’s latest movie, The Grey. It was awesome! Go see it!

Finally a trip to the book store where I cleaned house! I got 9 hardcovers and the most expensive thing was the tote I bought to carry them home in.

For the whole day I didn’t once think about cancer or treatments and I even managed to forget I was wearing a wig.  I should do this more often and there is no reason not to. Working at home has always been a bit isolating and even more so now.  Right after my treatments, even though I feel well most of the time, I don’t have to be anywhere and it seems prudent not to expose myself to the germy public in the days immediately following an infusion if I don’t have to.  Before I know it, a week has gone by and I haven’t left the house at all.  Then I have to force myself to.  I’m going to stop being so cautious and get out there more. If I get sick, I get sick.  Six months is too long to play hermit.

Today’s giggle:  I must have been on automatic pilot when I got ready to go out today.  I stepped out of the shower and saw that I had plugged in my curling iron.  I should put that away for now, along with the hairspray and gel.