Cancer

Breast cancer

My first day at Camp Chernobyl

Posted on by mainelyhopeful

Today was my first of 33 radiation treatments. I arrived early so I could visit the gift shop and buy some clear Aloe and Tom’s aluminum free deodorant and then proceeded to the changing room.  I am supposed to strip from the waist up, put on a johnny tied in the back and a robe and then sit out in the (very well air conditioned) waiting room.  The first johnny I took out was HUGE.  As was the 2nd, 3rd and 4th.  By now the laundry basket was full and the pile was dwindling so I gamely put on the 5th one I pulled out.  I wrapped it around myself 3 times and had to pull the strings through the arm holes and tie it in the front.  Anyone that needs something that big will likely not fit into the CT scan, so I’m not sure why they have them, let alone so many.   I assumed the majority of the people in that waiting room would be similarly dressed, but nope.  I was the only one.  Everyone else probably got a memo telling them to wait for the next load of clean laundry.  They were all in street clothes. Then I remembered there is another waiting room for those of us in various states of undress.  Anyway I sat there dressed like a burrito until it was time to go back. The treatment went well with only a mild glitch when they told me to take my arms out of the gown.  It was easier said than done. They drew on me again. I am going to bring coloring books for those girls so they will leave me alone.  I thought the tattoos were quite enough, thank you.  After the treatment you get the sense they are in a hurry to get you out and the next person in. Mainly because they whip your form off the table as soon as your head clears it and start setting up for the next guy. So I re-wrapped as well as I could for my trip back through the waiting room to the dressing room. When I stepped out I was turned around. There was a flimsy dressing partition where there should be a door. The tech saw my confusion and said “Oh sorry, just step around it, that’s our door”.  Anyone over 5’4″ walking by would have a clear view of me being radiated. FML.

I leave you with this cute little burrito. Did you know it is impossible to find a stock photo of an adult burrito?  Weird.

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Numbers games

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I’m no math genius but I always thought numbers should make sense and be orderly and neat.  I had my genetics counseling/testing meeting yesterday and honestly, I wish I had skipped it.  I have never felt like a doctor was rooting for the cancer until that moment. Having been given all the “stats” I came away with we are hoping for a positive BRCA  because a negative is basically meaningless and would mean convincing others in the family to be tested until we get the desired (??) results of a positive. The pros and cons of testing were laid out, it was suggested I postpone radiation (not gonna happen) until the results are in. I pointed out I would be more than halfway done by then. I was told results had to be given in person (did I mention I will be in the middle of radiation at that time?). I was told if I’m positive my risk for recurrence is 4-10.3%. My current risk for recurrence after treatment is 10%.  I’m supposed to have a mastectomy based on an increased risk of .3%.  This was when then numbers started swimming in front of my eyes Image.   I’m okay with having an oophorectomy based on increased risk of ovarian cancer but I already have, and am dealing with, breast cancer.  Lynch syndrome was brought up. Apparently I am not at risk but someone, somewhere in the family might be based on more numbers and statistics. I was starting to feel responsible for getting family members to be tested based on stats and probabilities. How would those conversations with the more distant relatives go? “I’m not sure you remember me, but I have breast cancer and I think you should be tested for Lynch Syndrome. What? I have no idea. Look it up”. At the end of all this counseling I was asked how I would proceed with my treatment if positive. I said exactly as I am now.  Then I was asked if I wanted the test while the person asking was nodding their head in the affirmative.  I found myself agreeing and before I knew it I was in the lab.  The very second my blood was drawn I started regretting it.  I really wish I had slept on it. I may have still gone along, but I wish I had thought it through, discussed it with my oncologist or just tried to let the numbers settle a bit.

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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Chemo cookies.

Posted on by mainelyhopeful

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.