Cancer

Breast cancer

Today my glass is half full.

Posted on by mainelyhopeful

I am normally a half full kind of person, though I definitely do have my half empty days. Don’t we all!   Yesterday marked the halfway point of my chemotherapy. I have completed 8 of my scheduled 16 rounds, 4 AC and 4 out of 12 Taxol.  I remain very lucky and grateful. My side effects are minimal. No neuropathy or nausea, some aches and pains that are easily taken care of with light exercise and a hot bath.  I’ve had to take nothing stronger than the occasional Tylenol.  I’ve even managed to keep a cold at bay so as to stay on track with treatments.  And.. my hair has been coming in since a week before my last AC treatment! I fully expected to lose it again on the Taxol, but that hasn’t been the case. It initially was snow white and now has some color, but not the color I was hoping for. It’s definitely gray.  But it is hair. And it is my hair.  I’ll take it and learn to dye love it.

I find myself feeling a little guilty these days at my good fortune. So many people at the cancer center look like they are not faring nearly so well with the side effects. Of course I don’t know what kind of cancer or what stage they are in but still… I wish I could share some of my luck with them.  Yesterday while waiting to be called back after my labs were drawn I met Boomer, the center’s therapy dog.  What a cutie!  He approached each and every patient and brought smiles to all, even some that were looking pretty down trodden up until that moment. My husband and I got a good laugh at the thought of one of our hooligans being therapy dogs.  It would certainly make it interesting for the staff!

Image

Clover and Comet

I was catching up on my reading of the many blogs I follow before posting and one made mention of making lemonade out of lemons. My comment was that I always have preferred to open a bottle of vodka and drink until the lemons are gone but in light of my newly (forced) healthier lifestyle I will give that lemonade thing a try. We’ll see how that pans out.

A fine line between educating yourself and making yourself crazy.

Posted on by mainelyhopeful

When I first found a lump, before I even saw my GP, I became a googling fool.  With each progressive test and referral it became a near obsession.  I’m sure I’m not unique in this. In fact, although I never mentioned my nocturnal forays into the darkest reaches of the internet to my doctors, they all said something to the effect of  “don’t spend all your time on the internet” “try to stick with sites that give accurate information” (I was given a pre approved list at this point) and later on.. “don’t listen to well meaning friends who have been through chemo. Their experience won’t necessarily be your’s” (and hasn’t that been the truth?!). But just like when a woman becomes pregnant for the first time and wants to immerse herself in stories of pregnancy, labor and motherhood.. you can’t always filter the information so all  you hear about  are the great experiences, perfect patient/doctor relationships, spouses and family that support without fail and happy endings.  Even while inwardly cringing and wondering at the motives of a person who will share tales of 36 hour labors, nurse Cratchets that took glee in their misery, babies who cried 24 hours a day for 2 years straight.. you still can’t help listening.  And researching. And comparing.  Since my diagnosis, surgery, chemotherapy, and impending radiation I have clocked plenty of google time. I’m not sure why I continue to and what I expect to find today that I didn’t find last Thursday.  

This isn’t new behavior for me.  Even before I had access to the internet.   There was a time that I worked as a medical transcriptionist out of my home. I worked for many different disciplines, including cardiology, family medicine, obstetrics, ENT and later psychology and psychiatry.  When I started out I would recognize myself in the patient’s list of symptoms.  The more unusual and obscure the more likely I was to be experiencing the same thing.  I didn’t bother to see a physician regularly during this time.. I had the power to diagnose myself!  I would type along, anxious to get to the diagnostic part of the report and find out exactly what was wrong with me.  Of course nothing was wrong with me and I knew that, but it was easy at times to “go there”.  Compare yourself to someone else based on a handful of similarities.   If have the same diagnosis and treatment plan as another patient and she terribly sick with the chemo, will I be?  If I’m not does that mean the chemo isn’t working? What if it’s the wrong dose?   If someone with my exact diagnosis who did the same treatment has a recurrence 3 years down the road, is that my future?  Why is my hair coming back while still on chemo while someone else’s has made no appearance 3 months after stopping? I’m sure that means mine is going to fall out again, right?  

It’s honestly crazy making, but on the other hand, comforting in some way or we wouldn’t do it.  Btw.. I stopped trying to diagnose myself about the time I switched from medical to psychiatry.  Now I only diagnose friends and family.

I’ve been doing things without my consent.

Posted on by mainelyhopeful

I do a lot of online shopping for my business so getting packages delivered is nothing new, but every day is an adventure lately when mysterious boxes arrive and I have no idea what they could be. Apparently within the last week someone decided I needed two boxes of business cards.  I do actually need them but one box usually does me for the better part of a year.   It  was probably the same someone who joined two book clubs within a weeks time and managed to order several duplicate books.  Someone has also been misplacing things around the house lately.  At least that isn’t costing me any money, but it is very annoying. I have it on good authority that chemo brain isn’t “real” because there is no treatment for it.  So.   

Nothing too terrible or dangerous has resulted from this non side effect that doesn’t exist. I continue to lose words and at lunch wanted badly to order killer bees but managed to find something on the menu.    I did try to remove my makeup with Biotene instead of witch hazel  the other day and thankfully realized it before reaching my eyes. This morning I put saline nasal spray in my eyes instead of eye drops.  So far I haven’t become lost, which anyone who knows me must consider a minor miracle. I have zero sense of direction.  Turning me loose pretty much anywhere and telling me I had to find my own way back would be hilarious albeit kind of cruel.  I’m sure my family has considered it.  Especially when I accuse them of hiding things just to mess with me.  

I don’t mean to cause  anyone worry.  As long as I am kept away from hazardous chemicals, anything hot, sharp or requiring a major credit card I should be okay.   

I should offer a disclaimer for my oncologist. She did not suggest I was making up the symptoms, just letting me know there was nothing to be done since there is no medical evidence, just a lot of anecdotal evidence of brain fog.  I’ve decided to embrace it and enjoy this time in my life when I cannot be held responsible for anything.  I promise not to take advantage.

 

Today is perfect kite flying weather

Posted on by mainelyhopeful

 

Or as I nearly found out.. wig flying weather!    I often joke about my wig flying off on a windy day but today was the first time it was a real possibility! The weather has been unseasonably warm the last couple of days, in the high 80’s. Too warm for March!  Today is a more seasonable.. 65 with bright sunshine and high winds.  Love it!  Windows wide open and cool air blowing winter and all of it’s accompanying germs right out of here!   On the cancer front, it’s too soon to have a handle on the Taxol effects.  With AC I kind of gave myself the better part of a week to rest up and had 2 good weeks each round.  My taste buds would be out of whack for the first week too, but again.. I had two good weeks.  I was hoping I would only have one down day with the smaller, weekly dose of Taxol.  I was able to rest Wednesday and felt pretty good, just a little tired.  Started out with lots of energy yesterday but by noon was dragging, achy, sweaty and nauseous.   The hot wind blowing through the house didn’t help, it just felt strange and unsettling. Today’s colder air feels awesome. It’s actually invigorating.   My taste buds are seriously impaired right now and my mouth is super dry.  Lunch out and a shopping trip left me feeling nauseous and exhausted.  I hate taking anti nausea meds.. they knock me out.. so instead I’m sipping on cancer causing caramel colored soda and it’s helping.  Go figure.  I’ll be venturing out into the wind soon to see if any of my laundry remains on the line or if it ended up on the neighbor’s roof.    I’ll leave my wig in here where it’s safe.

Making friends with Monday

Posted on by mainelyhopeful

I have never been a great fan of Mondays. Who is?  On one hand it’s the beginning of a new week. A fresh start. Well technically Sunday is the first day of the week, but don’t most of us consider Sunday the end of the weekend and so, by default, the end of the week? As a kid, Monday was the first day back at school after total freedom. As an adult, first day back at work after some relaxation, getting caught up on chores, etc.  And when I didn’t work, or worked at home, it was laundry day to add insult to injury!  Wednesday is a good day. It’s the middle of the week “hump day”. And if you get through Wednesday,  by Thursday the weekend is in sight again. Friday’s rule!  Saturday and Sunday, unless you work weekends, are when all the fun happens. Weddings are almost always on a weekend.  Parties too!  We alternately work and play on Saturday and relax on Sunday.  For many Sunday is a day of worship.  And then back to Monday.  You may have noted I made no mention of Tuesday. What’s Tuesday besides the day after Monday and the day before hump day, which is the unofficial countdown to the weekend?  For the next three months beginning tomorrow they will be known as Taxol Tuesdays to me and depending how that goes I may forever hate them.  So.  It’s time to make friends with Monday.   On Mondays I will get everything squared away for the week in case I need a few down days later. I will spend as much time outside as I can, see a movie or read a good book, get the errands caught up and yes.. do the laundry and hang it outside in the sunshine and cool, fresh air.  Monday night I will sleep like a baby in those line dried sheets and get up Tuesday morning ready for round 2 in the battle against cancer.  Okay.. maybe I will come to love Tuesdays. It could happen.

All quiet on the Eastern front.

Posted on by mainelyhopeful

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?

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.