breast cancer

All quiet on the Eastern front.

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Haven’t had anything to really blog about.  Life feels nearly “normal” right now. Working on taxes, enjoying some nice weather (even hung out laundry for the first time this season – really.. it’s the little things) .   And in typical Maine fashion the day after it was nice enough to hang laundry it snowed!   The ground is once again white but in March that’s what’s known as sugar snow. The sap will really start to flow now.  We enjoyed a night out with friends over the weekend and spent some time with our girls on Sunday.  Last night I had a glass of wine  and watched the drama on American Idol (total guilty pleasure.. AI and the Voice!)  Though I haven’t had much to say I have continued to check in a few times a day and read. Some of the blogs have brought a smile, some have been informational and one nearly broke my heart.  It’s funny how fast I have become attached to a group of ladies I will probably never meet and I wouldn’t dream of not checking in regularly to see what they are up to, how their latest tests have come out and what’s next for them.   I guess it shouldn’t surprise me… I have forged other cyber friendships over the years…  but it always does.  Keep blogging ladies.  Even if I don’t always comment I’m listening.

Vivid dreams or acid flashbacks?

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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

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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

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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.

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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.

All My Heirs.

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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.

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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

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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 🙂

 

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?