chemotherapy

My Bucket List

Posted on by mainelyhopeful

I have been working on a bucket list since long before my cancer diagnosis and, I imagine like all cancer patients, decided I had better get serious about the thing. What follows is a work in progress. The items that are crossed off were not realized, but simply thought better of since it is apparent I will, in fact, live.

Get a tattoo before I turn 50  (I still have 2 months, get off my back)

Last 2.7 seconds on a bull named Fu Man Chu (that’s a stupid song anyway)

Get a red mustang convertible.  (I didn’t really want one that badly until my husband bought himself a sporty little BMW this summer. Someone clearly lost sight of who has cancer in this family.  Yeah, yeah, he says I can drive it whenever I want but he always checks when he gets home to see if I did.  I caught him chalking the tires the other night)

Have more patience.  (a work in progress)

Get published (does this count?)

Get arrested See above.  I figure a good writer has to have something interesting to write about.  I hadn’t worked out the details of my arrest, but I know it would involve much hilarity (and liquor). I bet at least one of my cousins (Ann :)) would have taken one for the team and joined me.

Become a grandmother. (Kids?  I can’t do this myself)

Travel more.

Clearly the list needs work, but I’m in no hurry to finish it.   The only thing my bucket is going to be used for this next week is ice to chill the champagne. 

Just for fun

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I’m going to start keeping track of the more insensitive comments around my cancer care.  I know that sounds petty, but like I give a shit.

This week’s winner… I was asked to let a man go ahead of me for treatment on Thursday. Poor guy needed a full bladder for radiation and he did not time things very well. Of course I had no problem with it.  A nurse who does patient education (and whom I have never seen before) was waiting for him and decided to sit down and chat with me. She asked how I was doing and commented on my hair growth. Then she said “as far as we ( btw.. who is we?  are you speaking in the royal sense or is there is a mouse in your pocket?) are concerned you can dye it anytime”.  I felt a horrified giggle bubble up in my throat.  I have been on auto pilot for a few weeks now and as long as I stay in neutral I can keep my shit together.  I managed a weak smile and offered that I hadn’t decided yet and may just keep it as is.  She got this frozen smile on her face and sputtered something about how I could probably get away with that, after all I had a young face.  She must have missed a few classes on sensitivity. Not that I expect (or want) to be treated with kid gloves, but between the doctor who treated me like an inanimate object on Monday and now this I’m starting to wonder if this is commonplace. I have been so lucky in my interactions up until now that I was kind of unprepared. Or maybe now that I’m nearing the end of my cancer treatments my head is a little clearer and there have been assholes all along  but I just didn’t notice.

I’m not nominating the next one for anything because I can’t think of one funny or sarcastic thing to say and this is supposed to be for fun.  It actually left me kind of stunned.  I saw my medical oncologist for the first time since finishing up with chemotherapy.  I had (wrongly) assumed that my doctors all shared information about my treatment especially something like a major change in my family medical history. I missed a full week of radiation when my sister passed away.  Yet, apparently there was no mention of it so I had to tell the nurse when she asked brightly how my summer was going.  Believe me when I say it doesn’t get easier with each telling.  She passed on the info to my doctor who expressed her sympathy as soon as she entered the exam room.  After asking a few questions she said she had a patient who just lost a daughter and that was probably worse. I just said yeah, it’s been pretty hard on my parents. What I wanted to say is.. of course it’s worse for a mother to lose a child, but it’s also pretty fucking horrible for a child to lose his mother and a sister to lose her only sibling.  Not to mention for a man to lose the woman he loved who he hadn’t had nearly enough time with, three little boys to lose a loving presence in their life, and for their mother to lose a trusted confidant. But I just sat there.  Because I didn’t want to make her feel bad.

Honestly, the hospital really wants to stop sending me those questionnaires. I may start filling them out.

I no longer want to know where the missing socks go.

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I’ve moved on to a much more sinister mystery. Whenever I leave the house I am sporting two (nearly) matching eyebrows.

However, upon my return, more often than not, I have but one.  Where do all the eyebrows go?  Are they wandering around Central Maine lonely and scared?  Or getting into trouble?   I hope no one can trace them back to me.

Maybe I should have gone with a unibrow ?    

Topless and tattooed.

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So my scheduled 30 minute “let’s just talk” appointment ended 2 1/2 hours later with me naked from the waist up being fondled and tattooed.  If there had been drinks involved Image it would have been reminiscent of.. well… never mind.  I am now all set for 33 rounds of radiation.  25 to the breast and axilla and then an additional 8 just to the breast.  I do finally understand why I would need any radiation at all after all that chemo. Apparently cancer cells can be hanging out in the scar tissue from the surgery. Scar tissue has no blood supply so chemo is not delivered to the area as it is the rest of the body. Stupid scars.   Afterwards I was asked to meet with a very nice man from the American Cancer Society.  He had a lot of information but unfortunately, 8 months in, there was nothing I wasn’t already all too aware of. I’m not sure why this meeting happened now and not at the beginning of my journey, but it was a nice reminder of all that the ACS does.  I took the folder full of information I don’t need and thanked him. It will be a nice addition to the burn pile along with the endless pink themed booklets and pamphlets I was given at my very first visit to the interdisciplinary clinic.  

I mentioned in my last post about the lack of testing following treatment.  Interestingly enough, when I had surgery (at the same hospital, different building)  yesterday and was undergoing light sedation in the way of anesthesia I was told I would need to take a urine pregnancy test.  I declined and then asked what the thought process was here.. I just underwent 6 months and 16 rounds of chemotherapy and not once did anyone ask me to pee in a cup first.  They had no answer for me but did concede it was a good point.  Umm.. yea

My dance card is filling up again.

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So much for time off for good behavior!  Yesterday I had my port removed exactly one week after my last infusion. Apparently, that’s not the norm judging from the comments from the nurses and docs. Fortunately my oncologist was on board and agreed there was no reason to keep it any longer.  Today I meet with Radiation Oncology to set up the next course of treatment. I don’t think I get measured and tattooed today but I’m prepared just in case.  Afterwards we’ll do a little shopping. It’s a rainy day so no need to rush home. Next Monday I meet with the genetics counselor.  We haven’t made any travel plans for this summer since we don’t know exactly when my 6 weeks of radiation will start, but we are going to Boston for a weekend to visit our daughter and see Springsteen. Image That should be fun and I’m pretty sure I’ll be done with all of my cancer nonsense by then.   Speaking of nonsense, did you know they don’t recommend regular screening? Or at least not for me. No PET or CT scan.  So does that mean I never get to officially say I am cancer free?  hmmm.. not sure how I feel about that.  I’m going to address it again at my next follow up.  I’ve been pretty passive and agreeable so far. That could  change on a dime. 

Besides having cancer full time for the last 8 months we have been doing all the normal every day household stuff and are in the process of redoing our bathroom. They start next Tuesday!  Image  That’s what I see in my mind.. that will not be the reality, but I’m pretty happy with what we’ve chosen and it’s nice to have a project.  While planning this out all winter we acquired an antique clawfoot tub from the old family home.  It is a monster, weighs a ton!  We were planning to have it refinished but then decided to just go with a nice deep soaking tub Image.  There is nothing I love better than a nice long soak with bubbles and a book (which is why I will never fully commit to my Kindle).  Now we are faced with what to do with the tub in the garage. I’m thinking maybe filling it with flowers next year! Image. 

Back to getting tattooed.  I am pretty sure my port scar is permanent, having been cut twice in the same spot, so I’m thinking that would be a great place for a tattoo. How about this?  Image It’s the Chinese symbol for survivor. Whatever I end up with, it won’t be a pink ribbon!

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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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.