Sixteen Candles

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I have had the song, Sixteen Candles Chemos, running through my head all week. My 16th, and final, round of chemo is today! When I get home there should be cake and champagne!  Of course I won’t feel like partaking until sometime this weekend, but still.. it should be there. Naturally the only #16 candle I can find is pink (and very big.. sorry) Image

On the home and health front, these last few rounds have kicked my ass. Not enough to require any kind of medical intervention in between visits, just really exhausted. I feel like I am moving through thick mud most of the time.  And my “achy joints” have morphed into some pretty severe bone pain at times. I have one finger on one hand that keeps blistering and peeling.  It was the whole hand last week, steroid cream cleared up 4 digits, but the index finger is being difficult. It is also twice as big as it’s counterpart at the moment and on my surgical side. I’m hoping it’s not a sign of lymphadema, though I only had one lymph node removed.  We’ll see.

On the blog front, I haven’t had a whole lot to say, but I’ve been reading the blogs I follow daily. I see a lot of writing “assignments” or challenges and lots of awards.  I think it would be fun to participate and then I have nothing to say.  Which is not like me at all. I’ll keep reading, though, and maybe inspiration will come.

Today I find out what comes next. I know I will be spending the better part of my summer vacationing in Chernobyl. Other than that, not sure when I see my surgeon to have the port removed or when I start Tamoxifen, what scans I have when, etc. etc.  I have been kind of coasting along during chemo and as long as I am “doing something” I feel okay with this whole cancer business.  Ending chemo feels like a milestone, but for some reason it’s also making me feel a little uneasy.   My genetics appointment is coming up soon. I have very mixed feelings about that. Obviously, it’s important. On the other hand, I’m not ready to hear my whole treatment plan should have been different based on the results or my 20 something daughters have to start making tough decisions about their own future health.   But, for them, my sister and cousins I will go.

While googling 16 Candles I saw this funny. For you Molly Ringwald fans

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Chemo cookies.

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Ever think something is really funny until it’s not?  Just after my first round of chemo my mother gave me two big tins of ginger cookies (this was just after Christmas). I had picked up some crystalized ginger for nausea and she thought munching on a couple of these with a cup of tea would help too.  The ginger still sits on my counter all these months later. I’ve eaten maybe two pieces. One tin of cookies made it back to my daughter’s dorm and the other still sits in my dining room, largely untouched.  One day my husband reached for them and I overheard my daughter say “you cant’ eat those.. they are mom’s chemo cookies”.  I got a good laugh and some evil ideas.  Since that time if there is say.. only one stick of gum left I will say “I need that for my dry mouth”  hence our newly termed “cancer gum”.  It’s much like drinking the last cold beer on a hot summer day.  Nothing tastes better, especially if you know someone else (chemo cookie coveting husband) wanted it. I will sometimes (legitimately) ask the girls not to drink the last ICE in the house. This is a fruit flavored carbonated water with no calories, sugar or sodium that I love and there are days when it’s the only thing I want to drink right after a treatment.  Mostly though, nothing is really just for me. It’s all fair game. Until I want to mess with my husband and will claim chemo ice cream. This all got me to thinking about all the products out there sporting pink ribbons and how people will go out of their way to buy them when realistically they do nothing for cancer awareness.  Unless when you eat them you feel an overwhelming urge to donate or hug a cancer patient.  I mean.. who is not aware of cancer?  But.. you have to admit it is marketing genius. Which leads me to mention that if any of you marketing geniuses are reading this and think that’s it! Chemo Cookies! Cancer Gum!.. don’t do it. It would be morally and ethically wrong on so many levels. And also.. if you do, I want a cut.

Cookie?

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Good News, Bad News

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The good news? Self inflicted carpal tunnel is not a reason to stop chemo early.  The bad news?  I have no excuse to stop chemo early. Ha!  Actually I told my oncologist that I wanted to continue after coming this far and she agreed.  My numbers were looking good and my hemoglobin is on the rise and I’m already feeling it. I have no idea how low it got because each week I’m told my numbers look good. I assumed that meant I was some kind of hemotologic savant, but apparently all it means is they haven’t bottomed out yet so lets see how sick we can make this chick before she cries uncle.  I will assume my all time low was week six. That was the first time I really felt the full effects of all of this. Week seven (last week) was much better with only one bad day physically and one day when I was doing an internal one woman rendition of Camille Image.all day. It was all very dramatic and silly.   Sunday and Monday were really good days. I visited with family, got a lot accomplished at home, did errands and bought some beautiful plants to start working outside as soon as I can.  Next weekend we have two daughters graduating ..college and grad school!, Mother’s Day to celebrate and lots of family time. I’m determined this will be a good week and I will have plenty of energy to enjoy the weekend (by that I mean I plan to spend the next few days doing as little as possible so I can fully enjoy the festivities on the weekend).

Only 4 more treatments left. I had my favorite oncology nurse in the lab today.  She took my port virginity so we have a special bond. Actually they are all pretty great. Except for that one redhead whom I have never seen again. She must have been filling in or was fired after stabbing me in the chest accidentally sticking the needle in some part of my anatomy other than the large bullseye with all the scarring from previous needle sticks. Honestly, I can see how that could happen. If you were blind.  After she offered to try again and I said “oh hell no! Sorry, you need to get someone else, you only get one shot to kill me“. She brought in a supervisor who slipped the needle in effortlessly. Before she did she asked if the skin was still numb from the spray they use. I said “Not as numb as that one”. We all laughed uncomfortably and I made a mental note that it’s probably not a good idea to insult people whose job it is to stick large needles in your chest.  I’m usually pretty good about keeping my internal running monologue to myself but sometimes my filter slips. And sometimes I only pretend it slips.  That chemo brain has to come in handy for something.

Off to watch the voice and root for my girl, Juliette!  Image

 

You may as well laugh at yourself.

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Everyone else is.

So, the ongoing saga of my wrist splints aka carpal tunnel versus neuropathy.  The first night I wore them I had no numbness at all, the second night just a bit in my pinky.  Thursday I had a bad day.. just felt like crap in general, spent most of the afternoon and evening on the couch, so by the time I went to bed my back was killing me, I wasn’t tired after dozing off and on all day and I tossed and turned for hours.  Around 3 a.m. I woke up and my hands were completely numb.  I couldn’t feel them at all. And I had to pee.  I sat there in a panic flailing my left hand to get the blood circulating while ripping at the velcro straps of my right hand splint with my teeth.  I finally managed to get them off and get the feeling back in my hands, went to the bathroom and then came back to bed and lay there panicking that the chemo would be discontinued now.  I got myself all worked up Image.  I thought I may as cancel the radiation too, have a bilateral mastectomy and be done with it. (Now mind you, at no point in time was I ever told I had to have chemo to save my life. It was more of an insurance against recurrence. I could have opted for just radiation after surgery.   I have had 4 rounds of dose dense AC, and 7 of 12 rounds of Taxol.  That’s a whole lot of chemo. But.. while I was initially more afraid of the chemo than the cancer, now I am afraid to stop.)   All of these thoughts kept me awake and Friday I was dragging all day.  I went to bed Friday night and while putting on my splints, realized I had worn them backwards the night before, essentially cutting off the circulation to my hands. Honestly, I should never be left alone with devices of any kind.  I am happy to report that Friday and Saturday night I had no numbness at all.  The splints do go flying in the wee hours when a hot flash hits and I can’t stand them, but they are working.  When my oncologist asks how they are working out I will say “Fine” and leave it at that. If she wants to know what’s going on with me, she can read my blog. I want to continue the treatment if I can, but if she feels I’ve had enough that’s cool too. I’m all zen and shit about the whole thing now.

My latest cancessories

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So apparently the numbness I am experiencing is concerning, even though it’s not the neuropathy we are warned about with Taxol and it’s cousins where the fingertips and bottom of the feet are numb.   My oncologist said it was carpal tunnel but it is getting worse almost daily. I wake up to two completely numb hands and have to shake and flex them to get the blood circulating. I hadn’t put two and two together until she asked about my feet but I have noticed one or both will “fall asleep” when I’m watching television in the evening.  I have had carpal tunnel in the past when I typed for 8-10 hours a day and it was painful. This is not.   I was told I may not be able to complete the 12 rounds. I will wear these splints at night to prevent my nerves from compressing in the wrist causing numbness. If I still have it, then it’s the Taxol.  Since I’ve had the complaint from week one and it’s been progressively getting worse she wants to stop so I don’t have permanent damage. I don’t want to stop. I have cancer. I was told I needed 16 rounds of chemo and I want 16 rounds.  I know that sounds ridiculous, but I don’t want to be sitting in her office in 3 years and hear it’s back and we should have done more the first time.  On the other hand I was told from the beginning I was likely getting too much chemo, but since there is no way to predict if the cancer will come back, mine is hormone receptive and I am relatively young and there was micro-metastasis in the sentinel node, we would throw everything at it.

She brought up my genetics appointment again too.  It was moved back to June when I will be between chemo and radiation. I have mixed feelings about it.  I need to do it, especially for my daughters, but I don’t want to open that can of worms just yet. I’m tired of thinking about cancer. I don’t want to be told I should have had a mastectomy after all and I did all this for nothing.  I don’t want my 22 and 26 year old daughters to have to make decisions about their breasts and ovaries before they’ve had a family.

Otherwise, the appointment went well except for the unleashing of my paranoid obsessive disorder

Warning: rambling ahead

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I haven’t written for a while. I think my last blog mentions hitting the halfway mark of my chemotherapy. Since then I have passed another halfway milestone. I’ve completed 6 of the 12 Taxol treatments.  While I have been saying all along that side effects are not mandatory and I had no intention of volunteering for any, I’ve kind of hit a bump in the road Image. And yes it feels as big as the obnoxious sign mid-sentence. Today was the first day in a week I’ve left the house aside from my weekly cocktails with the girls.  By cocktails I mean poison chemotherapy being pumped directly into my chest and by the girls I mean Dr. T and the awesome nurses at the center.  In the way of drinking pals I could probably do worse. However the cocktails suck and this is one major ass hangover. I still have no nausea or neuropathy. I have daily nosebleeds and numbness of my fingers that I am assured is not neuropathy because I can “shake it off”. However it is happening more and more frequently.  My hair continues to grow and is about 1/2 inch long now and starting to curl. Still no sign of eyelashes.  I kind of miss em but in the grand scheme of things.. meh.  What has left me housebound for a week is just being plain exhausted.  I swear I can feel my marrow moving thick and sluggish through my bones and my joints ache nearly constantly.  I have muscle pains and headaches but they come and go. Most of the time I feel like I am moving through mud.  I have some energy in the morning, so I do whatever computer work I have waiting, clean the house a bit and exercise (and yes,  remaining upright counts as exercise some days), shower, eat lunch and then at the time that I would be heading into town with whatever errands I have I end up lying down for “just a minute”.  If I’m lucky I wake up before the mister returns from work 5 hours later. I’m still waking up at 4 or 5 a.m. but instead of waking up to those crazy dreams I blogged about earlier, I’m up thinking about all the things I want to accomplish, but just can’t seem to get done.  It will all get done but unfortunately I don’t think I will be contributing too much to the effort and I hate that.  The effects of this treatment really are cumulative and I’ve gone from one day of recovery with the first one to not leaving the house for a week with the 6th. This wasn’t part of my plan. I was going to breeze through it. I guess it’s time for a new plan. This week I will be content to get in some pansies.  Image  If that’s all I end up planting this year, that’s enough.

Since I’ve been on house arrest I decided to catch up on some independent films I missed. Can I just say.. Tree of Life.. what? This is a movie you can nap through and really, it doesn’t matter.  For real. Image

I’ve seen a few other films but they were fairly underwhelming and hardly worth a mention.

In other news.. coupons.  Who doesn’t love a  good coupon? Last week I came across 4.00 off Claritin but I didn’t need any and am not sure how long I will be taking them so I very kindly left two coupons on top of the boxes for someone to use.  This week I noticed it was on sale and wouldn’t you know I’ve been using it daily. I thought about those coupons I had left. On a hunch I looked and they were still there. A week later! There are two things that make this worthy of a mention. First.. no one bought Claritin in a week? Or if they did they ignored the savings?  Two.. and this kind of grossed me out.. that shelf wasn’t touched in a week. This is an allergy med in the pharmacy department and no one dusted? Really? In a whole week?  That shouldn’t surprise me, but it does.  I wonder what other things have been deposited on those shelves and left to fester.  *shudder*.

My thoughts have been all over the place in this post, but I want to mention a little girl in our community who lost her battle with cancer this week. She was six years old and had faced many challenges since her birth. I didn’t know her, but I understand she loved all that was pink,  purple and princess related. If you pray, please send up a prayer for little Megan and her family.  Image Balloons optional.

Today my glass is half full.

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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!

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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.

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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.

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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

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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.