Living through breast cancer

Vivid dreams or acid flashbacks?

Posted on by mainelyhopeful

Okay, I’ve never actually dropped acid so I’m going to have to go with blaming the AC for my nightly forays into the most bizarre mind twisters that you can imagine. I blogged about this phenomenon after my 2nd treatment but at that time it was not a daily occurrence. Though I have always dreamt, most days I wake up with only a vague memory of the dream and by the time I have had my first cup of coffee I’ve already forgotten it. Once in a blue moon    the dream will stay with me for part of the day if it was disturbing in some way or very pleasant and I want to hold onto it. I rarely have nightmares.  This is different. Since my final AC on 2/28 I have woken up every morning between 4 and 4:30 a.m. I fall asleep between 10 and 11 every night and sleep soundly until that time. Once awake it will take me as long as an hour to fall back to sleep and I will sleep until 7 or so, but I will have vivid and such detail oriented dreams that I can remember all of them.  Some feature Disneyesque animals, family members, locations that are all recognizable but morph from place to place so that it feels like I am in several places at once.  One had me in the hospital. I was in room 407 and could clearly read that on my wrist band, along with my name, dob and medical record number, which sadly I have memorized.  I was wandering around, sick and confused and begging for help.  I could not get back to my room and no one would help me. Stairways would turn in to fun house slides and elevators were actually large rooms revealing hospital personnel doing God knows what behind the scenes.   Turning a corner brought me to Downtown Disney (the Disney theme is recurring for some reason.. I guess I need some Magic). The dream went on forever and I never did make it back to room 407.  I have had dreams about babies and dreams that caused me to wake up laughing.  Dreams that were so real I could smell flowers and grass and taste things.  One dream was about a 4 year old girl (that to my knowledge does not exist) an old family house and some mysterious family secrets. I woke up worried about her.  

Clearly the dream about the hospital doesn’t take a genius to figure out.  Being a cancer patient (or I imagine any patient with a life threatening or life altering disease) leaves you feeling at the mercy of people who don’t know you and don’t have an emotional interest in you, only a clinical one.  That’s not a bad thing, except it can sometimes make you reluctant to ask for more.  I do find myself sometimes minimizing the effects of my treatments. After all, I’ve memorized all the possible side effects, taken measures to treat them as they occur and know which ones require medical attention, so they hardly seem worthy of a mention at my visits if they’ve  already resolved.  It’s like I wouldn’t  dream of bothering anyone. Especially after my thwarted nocturnal wanderings back to room 407! 

It’s gotten so I am alternately curious about my next dream and dreading it.  When my eyes snap open in the wee hours I know the next few will be interesting. I also know I will likely be exhausted all day. 

  

Monday’s musings and meanderings

Posted on by mainelyhopeful

Made it through the haze once again.  Each treatment of AC has been so different as far as side effects that I never really got a handle on how I would feel on any given day, though I thought I faked it pretty well (humor me). This weekend wasn’t great. Wasn’t horrible. It just was.  So now I’m done with the “big guns” as far as chemo and have the next two glorious weeks ahead of me before I learn what round 2 will be like.   Today I have big plans that include minimal housework, a real dinner (cooked by moi) and not spending any time at all on the couch or recliner where I basically took root all weekend.  I should tackle the taxes but I don’t wanna.  And no one can make me :). Not today anyway.  Tomorrow I’m outta here, even if all I manage is a trip to the post office and grocery store, but for today I’m content to be upright. I got lots of Daisy love over the weekend and have to share. Thanks girls ❤

 

Sunday funnies

Posted on by mainelyhopeful

Ever since I was a little girl I have loved reading the newspaper. I always start with the comics and work my way to the front page, Sunday being the holy grail of funnies!  Some old favorites have come and gone and some should have retired years ago, but I still read them. After I spent yesterday watching the entire Mildred Pierce miniseries (over 5 hours!) then choking down some bland chicken chow mein for dinner, I went to bed early feeling a little rocky and the feeling lasted all night. Not really sick, just blah.. I hate taking antinausea medication because it makes me sleep the day away. But I hate feeling sick even more. When I got up I decided to try and settle before I took anything. I honestly couldn’t tell if I felt sick or hungry so I tried eating.  It took me over 40 minutes, but I ate a muffin and a cup of coffee and was starting to feel okay. While playing fast and loose with my gastric juices I read the paper. I started out with a little Garfield and Peanuts, Hi and Lois, For Better or Worse.. all the old favorites. Then bravely ventured through the paper, finally making my way to the front page where much speculation is being made of Senator Olympia Snowe’s decision not to run for reelection. I have the greatest of respect for Olympia and wish her the very best.  There was yet another heartbreaking article about a little 20 month old girl who disappeared from our small community just before Christmas.  There is much speculation about what happened to her and very few answers.  A lot of mudslinging amongst family members and other members of the community. Sad, sad stuff. Of course to get to the front page I had to take a stroll through entertainment and sports, local news and the editorials.  On the entertainment front I am anxiously awaiting Mad Men! The wait has been far too long. I check out the new movie reviews weekly, but don’t ask me why. I rarely agree with the critics.  Sports? meh..Then I tried to read the editorials but honestly how much more can be said about the GOP vagina monologues that has not been said already?   Rush? Really?  It would be funny if it weren’t so damn predictable and distasteful. As much as I miss the funny papers of my youth, I’m really not interested in a one way ticket back to the 60’s.  Thanks anyway, boys.

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

Posted on by mainelyhopeful

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.

Making plans for spring.

Posted on by mainelyhopeful

We have 5 seasons here in Maine. Winter, Pothole (aka mud season), Spring, Summer and Fall. Fall is my absolute favorite but spring is a close second.  I start planning for my garden now.  We have had such a mild winter that I think it will be an early spring!   Not sure how I will be feeling during planting time. I have had a little more fatigue with each successive chemo treatment and will be starting the 3 month course of weekly Taxol mid March. I’m sure the smaller dosing will mean less in the way of side effects.  I expect some aches and pains, that seems to be the most common. All the more reason to get outside and keep moving!  I’ve got this great new straw hat to keep the sun off my bald head and I can’t wait for an excuse to wear it.  So.. besides my small herb garden, I want to put in a kitchen (salad) garden with tomatoes, peppers, onions and cukes, zucchini and summer squash.  Loads of flowers of all kinds to attract butterflies and hummingbirds. I do something different each year in the front of the house and want to try sunflowers this year out back.  My perennials need a good thinning out too.  The bird houses and feeders need cleaning and filling.  I.cannot.wait.to.get. started.

All My Heirs.

Posted on by mainelyhopeful

A more apt title would be All My Heirs Hairs. That would be a great name for a soap, no?  We all know that many types of chemo cause hair loss. Some cause partial hair loss, some cause complete hair loss (as in everywhere). So, it’s not unexpected. It’s not even all that terrible once you allow yourself to accept it. It’s even kind of fun experimenting with different looks. I thought I would be sad when my eyebrows went, but there are enough of them hanging on that I can fill in with a pencil.  My eyelashes are thinning quite a bit too, but makeup helps.  All in all, the reality has not been as bad as the anticipation, and that has been pretty much the case in all aspects of this journey with cancer.  But some losses I just wasn’t prepared for. I wasn’t warned about it. I joked about it months ago, not thinking it would really happen, but it has and it’s terrible.  Really, really awful!

Of all the hairs I have loved and lost the ones I miss the most are my nose hairs.  Drip.. drip…

Seriously. Someone should have mentioned it.

Got some good wishes in the mail yesterday.

Posted on by mainelyhopeful

ImageSomeone gave my name to this wonderful organization who sends a head wrap to any woman suffering hair loss due to a medical condition. The wrap, or “hug for my head”  I received is absolutely beautiful. I love it and will wear it often.  What was even better than the hat was the card signed by every member of the staff with a personal message to me.  It will be kept and cherished along with all the cards I’ve received from friends and family.  If you’ve never heard of them, here is the link. I would like to make the donation of a hug or two myself 🙂

http://www.goodwishesscarves.org/index.html

 

 

If you have nothing good to say ….and other lessons

Posted on by mainelyhopeful

So life lesson this week was no one wants to hear a cancer patient complain.  Even a tiny little complaint will be met with a panicked “STAY POSITIVE”. I think I am fairly positive most of the time. I try to focus on the fact that I have had very few of the really horrific side effects that so many others in my boat suffer from and for that I am grateful. Doing a quick mental inventory of the people who I interact with daily, both in person and otherwise, I probably complain far less than most, especially about health issues.  When I commented to a relative that I was struggling with my concentration and fatigue, the response made me feel like I should keep those kinds of things to myself unless I am sitting in my physician’s office and since I always have a family member with me during oncology visits, I now feel like I should temper the complaints even then, lest I upset someone.  When I vented to some friends about how that response made me feel I was given a laundry list of excuses for the relative, again making me feel as though I should have kept my feelings to myself.  One lesson I am taking from this is to be a good listener and not try to minimize other people’s feelings or, worse yet… tell them how they should be feeling. The second lesson is to stay positive. Even if you have to lie 🙂

 

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

Posted on by mainelyhopeful

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…