Month: January 2012

Look good, feel better? Not so much.

Posted on by mainelyhopeful

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.

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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.

My wig is choking me!

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Had breakfast with a friend today who I hadn’t seen since before my diagnosis.  We’ve spoken often, just not face to face.  I wore a new wig for the first time and omg.. I wanted to snatch it off my head the whole time. This is where I should mention that I have a perfectly lovely wig that was given to me free of charge through the American Cancer Society. It was fit when I had a full head of hair and I loved it so much that I went to the site of the maker of it and ordered a second one in a different, shorter style.  I have worn the free one twice and the new one one time.   Btw.. the American Cancer Society also sponsors the Look Good Feel Better workshop that I will be attending on Monday.  I will probably not be wearing a wig to that.

So anyway, my friend said the wig looked great. Very natural. So why did I feel like some animal had landed on my head and nested?  I visited with my mom for a while and the first thing I did was take it off. I reluctantly put it back on when I made a trip to the grocery store.    When I was cashing out a woman I have known for probably 25 years said “I love your hair!” *snort*  and came over to touch it (who does that?).    I just said “thank you” and wondered to myself what she would say if I blurted out it was a wig.  After I loaded up my bags I got in my car and immediately took it off and put on a soft cap I had with me.  It never occurred to me that someone might see me and I don’t really care if anyone did.  So why can’t I bring myself to leave the house without it, other than for medical appointments? Should I really care about other people’s discomfort if I look like a cancer patient?  Something to ponder.

Today’s smile

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Usually when Fed Ex or UPS shows up it’s with packages for my ebay store. Nothing too exciting so I ignored the bell because I was doing housework commando (bald).  When I did grab the package I had a delicious surprise from my cousin and her family.  I’ve already eaten one and now I need to hide them before the mister gets home.

Shari’s Berries

Flying catdogs, runaway pickups and teleporting relatives

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The makings of a summer blockbuster?  A country hit?  Nope, just chemo-dreamin.  I’ve always had kind of vivid dreams, sometimes even serial dreams when I couldn’t wait to go to sleep to see what would happen next.  I’ve woken up so pissed off at someone that I was sure they would give me a good reason by the end of the day so I just went with the feelings. Those were daydreams compared to today’s double feature.  I would describe my dreams in greater detail, but on the off chance one of my doctors stumbles across this blog I don’t want to be subject to psychiatric testing.  Not that there is anything wrong with that.  The other day a friend described a vivid, confusing dream about her son. I teased her and asked what she ate before bed.  I didn’t eat anything particularly strange but I am on day 6 of my treatment and after two infusions I can safely say days 5 and 6 are  when I am going to feel my worse. My “worse” though is not nearly as bad as some people experience on their best day, so I’m trying really hard not to whine too much.  I spent the afternoon watching mindless television until I could doze off. This included about 20 minutes of Toddlers and Tiaras which will be a rant for another day.  Those mothers… ay yi yi..   I took an Aleve for pain and an Ativan just because. The Ativan was prescribed for nausea but has also been prescribed for anxiety.  I had neither. I knew it would knock me out and that it did. Okay, maybe it was the Ativan and not the chemo? Or maybe it was just me? In any event, my dreams were interesting enough to remember, crazy enough to be disturbing and kind of fun.  I’m anxious to go to sleep tonight. Sweet dreams!

 

I don’t want to talk about cancer today

Posted on by mainelyhopeful

But since this is why I started the blog I will just mention that this second round of chemo is going well and leave it at that. I woke up today to falling snow and felt lucky that I have nowhere to be and the perfect excuse to stay home even if I did. I huddled under a blanket with coffee and the newspaper and by the time I was finished, the snow had stopped and the sun had come out.  There is nothing prettier than blue skies and fresh snow.  I have been watching the blue jays and squirrels compete for the corn in the feeders and the dogs romping around in the fresh powder.  I’m catching up on some bills and computer work and feeling blessed.   Hope you all have a great day/weekend.

A new attitude

Posted on by mainelyhopeful

After my first treatment I kind of went into self preservation mode where I rested most of the day waiting for side effects to hit me. When they did, about 4 days in, I was so “weak” from basically doing nothing that I think they were worse than they might have been. The side effects only lasted less than 2 days but it was nearly another full week before I had any energy at all. I was really wiped.  The doctors tell me to do whatever I did last time because I’m doing great medically, but I think I can do better. This time around I am remaining active until my body tells me to rest.  I’ve been up for hours at the computer, will do a small work out soon and putter around the house. If I’m tired later I will throw in a video, but try not to sleep the day away.  The last time my husband was on vacation and my girls were here on break from school so I literally didn’t have to lift a finger. This time around I am feeling more independent and let’s face it, if there is no one to hear you, what’s the point in whining? The dogs are adept at ignoring me.

And my life is ridiculous moment of the day….  I just spent an hour grooming my head with a lint roller.

Making do

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When we arrived at the cancer center there were these huge blowers in the lobby. Didn’t think anything of it until I saw several groups of men in hard hats going through the doors to Medical Oncology. Had my lab work and was taken back for the nursing assessment where I was told the place had been under water yesterday!  A pipe froze and burst and they were shuttling patients to the hospital all day for chemo. Today they had made accommodations on site, so after the nursing visit I waited to see my Oncologist who was waiting on my lab results. The flooring had been pulled up on in the exam rooms and the baseboards removed. There was a lot of hammering and sawing going on and those huge blowers everywhere.  What is usually a very peaceful space was complete chaos. When the doc finally got my results and came in to speak with me she was asking me the same questions she had asked at my interim visit.  I answered them but after a few minutes couldn’t resist saying we had gone over all that last time. She didn’t realize I was here for a treatment or was so frazzled from the chaos that she forgot!  It was nice to see her in that human light. Not that she is the type of doctor to hold herself “above” her patients, but still.. it made me laugh. We finally got upstairs where they had transformed a conference room into chemo bays (but with no privacy at all). One man was snoring so loudly I thought he was choking and wondered why no one seemed concerned.  Another was getting sick and they had to stop his infusion and the Oncologist came to speak with him. They were just starting it up again when we were leaving a few hours later. My meds were not there, had not been ordered, so we had to wait for a bit. Once I got them it all went smoothly. I was sad to see  the man in the chair closest to me was a teacher from my high school. I don’t know what kind of cancer he has, he didn’t say and I didn’t ask.  He and his wife and my mother chatted the whole time we were there and when I was leaving he asked when my next one would be and wondered if he would see me again.  It was a very different experience from my first one, but the time flew by and I was grateful not to be shuttled to another building like the poor patients were yesterday.

Today was also the first time since my hair loss that I ventured out without a wig.  I have a beautiful wig but my scalp is still very tender and even with a liner it hurts. I have been wearing it more out of consideration for others. At home I wear one of those really soft sleep caps or nothing at all.  I even stepped out onto the deck with my naked head and quickly remembered the date!  Not going to do that again.  Today I wore a really pretty blue scarf that just happened to match my outfit. I felt more confident in that. I am certain even the most casual observer can tell I’m wearing a wig and it makes me self-conscious. Strangely, wearing a head scarf did not. Go figure!

I just want to add a funny that one of my Daisy girls posted for me today.  Thanks, Gumbo!

 

Shit Girls Say to Other Girls With Breast Cancer

Round two today

Posted on by mainelyhopeful

My mother is picking me up shortly for the 30 minute trip (in the snow) to the cancer center.  This is round two of sixteen.  I feel much better going in. Last time around was two days after Christmas. I was exhausted, nutritionally a hot mess and scared of the unkown.  Still, everything went fine and I expect the same today. I’ve been eating better and trying to exercise every day. I had a good work out this morning, got my house in order and my orders out for my small ebay business.  I feel strong and optimistic. Bring it chemo.

If they are blessings why do they need a disguise?

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No one has used that phrase about my diagnosis of breast cancer, at least not to my face but you hear it so often when someone is sick or even dying.  How their illness is a “blessing in disguise”?  I’ve never understood that. Blessing? Really? I have been blessed in many ways but having breast cancer is not in the top 10. Top 100 even.

I do admire people who can find blessings in things like illness. I’m just not at a point where I can agree.  A tip of the wig to you.