Treatment

Chemotherapy, radiation and hormonal treatment for breast cancer

What color ribbon does imaginary cancer get?

Posted on by mainelyhopeful

In the news over this past week there have been two stories of women who faked cancer for monetary gain.  One  who faked breast cancer will be spending a year in prison with her new implants.  Hope it was worth it. In a conversation recently about this I suggested she should have been sentenced to a few rounds of chemo.  I wanted to suggest making her volunteer in a breast cancer clinic, but can you imagine being a patient with actual cancer and having that around?  I’m guessing it wouldn’t end well.  Then yesterday I saw another story about a woman faking bladder cancer.  This one got a wedding paid for by friends and family.  She was ultimately turned in by her own sister who was worried about her niece and nephew. Can you say “emotional abuse” boys and girls?  Another one back in April got her dream wedding after lying about having leukemia.

Scamming is nothing new, but scamming your own friends and family?  And letting them believe you are dying?  I can’t wrap my head around it.  Less than a week after I was diagnosed we got word that someone who I have long considered family had ovarian cancer. I can honestly say I cried over that more than my own diagnosis.  I prayed for her and asked everyone who offered prayers for me to do the same.  I asked after her often.  Ultimately it came out that it was a lie.  I wish I could say I was stunned, but I had been suspecting it for a while.  I am relieved that she is not sick. I’m happy she will not leave behind a son and grieving parents.   I kind of tabled my reaction because I was fighting my own battle and because I honestly wouldn’t know what to say to her family/friends, but now I don’t mind saying I am beyond pissed. Yes, I know it’s not really any of my business. No, I wasn’t personally affected, but someone who I love deeply was.  This person was devastated by the news that two people he loved had cancer and he couldn’t do anything about it.  He was living and working in another state while his heart was here. While I was downplaying my own struggles at the time out of a desire not to cause more stress and anxiety for those I love, she was taking the other road… causing needless stress and anxiety. I don’t know what her motive was. I don’t know if there was a pay off.  It really doesn’t matter at this point.  Some things can never be undone.

Sometimes people just suck.

No going back now

Posted on by mainelyhopeful

I have been saying since my hair came in (first white, now a mix of gray, silver and black) that I was done with coloring. It is what it is. After nearly a year of harsh chemicals flooding my body, radiation and a five year commitment to Tamoxifen and all of it’s lovely accompanying side effects, I’m just not feeling the urge to slather smelly color on my head every 4-6 weeks. For that matter, I’m not going back to many of the products I’ve used in the past.  During radiation I started using Tom’s natural deodorant.  Once you get used to not smelling like a meadow at sunset or a tropical beach it’s not so bad. If it’s safe to use during radiation, I’m good. I am slowly cleaning out my environment as well as what goes into and on my body. Will it prevent a recurrence?  No idea. Did I get cancer because of my dying my hair and using deodorants with aluminum and parabens? No idea.  I’m even cutting back *gasp* on alcohol.  Okay.. that’s not that hard. I drank very little through the months of treatment and after an emotional week around my sister’s birthday when we had several evenings out, averaging about 2 drinks a day,  I really felt kind of sick by the end of the week. I don’t have to be hit over the head with a swizzle stick to know why. I’ve given up diet soda and my caffeine intake is pretty minimal.  My diet was pretty good otherwise, lots of fruits, vegetables, grains and protein but there is a lot of room for improvement (always).

Oh yeah.. back to my hair and the reason for this post.. the reason there is no turning back now is my license is due for renewal this week. Yeah.. I get to have my picture taken at the DMV while just getting my hair back after chemo.  That’s gonna be a whole lot of forehead.  DMV photos are so lovely to begin with. This should be good. I could renew on line but I haven’t looked like my last photo (2006) in a while and never will again. My hair is long and black. I was about 25 lbs heavier. Anyway, feel sorry for the clerk, I will have no shame in playing the cancer card to get her to take my picture over (and over if need be) if it’s as bad as I anticipate. Wish me the DMV luck.

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What I would tell my providers….

Posted on by mainelyhopeful

.. if I weren’t such a chickenshit  so unwilling to distract them from the very important work of saving lives. 

First of all, if you are part of a “team” caring for a patient, then please pass on all pertinent information regarding that patient’s care to the rest of the team so that she doesn’t have to repeat herself ad nauseum. In my case, as far as I know, my labs and test results were shared, but other things that certainly impacted my emotional well being, if not physical, were not. Or they were and having me repeat them was some kind of test of my mental/emotional status.   The latter is being generous and I’m guessing it’s more the former.

Please read my chart occasionally. Just before a visit would be awesome if you can fit it into your busy schedule.  If YOU sent me for testing you should be looking for those results.  If I have to ask if you’ve received them and you have to go rifling through the chart to see if you have, it makes me feel a) the test wasn’t all that important to my case, so why the hell did you send me for it (at the tune of $4,000.00 I might add)? or b) you’re just not all that interested.  I realize I am not your only patient. I am not your sickest patient. I have the “run of the mill” breast cancer that elicits a big ho hum in the world of cancer treatment, but for the 15 minutes I am in front of you I should damn well be your only patient.  And you should be as prepared for my visit as you expect me to be.

If you are leaving your practice, a mention to your patients would be really good form.  When I got my diagnosis I was assigned to a team of 3 doctors. Two of the three of you had been here for only one year.   Having lived in this area my entire life and worked in the medical field (first in the  hospital where I receive treatment and then as a medical transcriptionist) I am familiar with most of the doctors, at least by name and specialty.  It would have been comforting to be sent to a surgeon with a long standing practice, however I was very happy with you and you did a great job. No complaints.  Except. You’ve apparently left the area. This is after telling me that if I had any problems in the future I could forego the referral route and just make an appointment.  You told me my followup would likely be with Medical Oncology and there was no need to see you on a regular basis but I could (and probably should) check in yearly to remain active in the practice.   I only found out you had left when my Radiation Oncologist mentioned it.  In hindsight, when I had my port out you said “No need to come and show me the scar. You never have to see me again”.  Okay then.  While I make it a policy not to get emotionally attached to someone who tells me I have cancer, a quick note from your office manager would have been nice. If I do have further need for a breast surgeon I would hope I wouldn’t just be passed off to whoever happens to replace you.  No offense to the newbies, but in the future I want a surgeon who has been here longer than five minutes and plans to stick around.   Same goes for my oncologists.

And oh, the breast care navigators. You nurses are wonderful. You are available anytime  we need to talk.  You come and hold  our hands through difficult tests and procedures.  You run support groups.   I’m not someone who would normally avail myself of a service like this. It’s not that I am unappreciative. In fact, having my hand held during my second biopsy and sentinel node mapping, not to mention getting a phone call immediately after hanging up with the doctor (who delivered my diagnosis over the phone, btw, and only afterwards thought to ask if I were alone) to make sure I was okay was more helpful than I can express.  However, sitting me down less than 24 hours after I received the news I had breast cancer and going over such things as drainage bulbs, tattooed nipples, and the importance of knowing how to draw on eyebrows, complete with a demonstration of how alien like I would look without eyebrows by holding your two fingers over your own, was not only unnecessary (in my opinion), but unwelcome. I may have been looking at you intently and nodding appropriately, but in my head I was screaming “what the FUCK!”.  I can’t speak for other women, but at that point in time I only wanted to know if I was going to live.  Without knowing whether or not I would need a mastectomy (I didn’t) or chemotherapy (I did), much of that information was not pertinent to my case at all.  Once my course of treatment was decided would have been the more appropriate time to discuss the things that applied to me. I should mention the nurse who held my hand and spoke with me over the phone was not the same who sat down with me.  I have no idea if it would have been different speaking with her.  Two completely different personalities.  

I don’t want to make it seem like I am ungrateful for my care. I’m not.  I feel like I got the best care available to me.  My questions were answered and I tried to answer yours as truthfully as I could to aid in your care of me.  However,  I’m not someone who wears their heart on their sleeve or complains about physical discomfort. Outside of members of my immediate family, if anyone asks how I’m doing 9 times out of 10 I will say “fine!” no matter what is going on with me.  I don’t complain about things that I consider minor or things that you, my doctors, have told me to expect and how to deal with.  So, when I fill out those questionnaires at the start of each appointment and mention something like daily nosebleeds for 6 months straight, brain fog, exhaustion, etc..if you brush it off, I won’t mention it again. That doesn’t mean my course was “easy”. I know compared to many people it was easIER, but trust me, it wasn’t easy. Not by a long shot.

A certain glow

Posted on by mainelyhopeful

Two full weeks out from my final radiation treatment, I feel well. Still kind of tired at times. Lately I am in bed between 9 and 10 pm, where I have a standing date with Barnabus Collins via my little Kindle Fire (I still have not read one book on it and my pile(s) of hard covers continues to grow).  I usually last through one or two episodes, then it’s lights out.   I wake up feeling refreshed, no aches and pains until mid afternoon when I start to walk like I’m 90 years old.  A cat nap fixes me right up.  All in all, no complaints.

Yesterday we had a celebratory lunch at a restaurant owned by a close  family friend.  She and her daughter told me how good I looked. That I glowed.  My response was “that’s the radiation!”. Later that evening I was blaming my “glow” on hot flashes. I imagine it’s a combination of the two.  Or it could be that my new feeling of wellness actually does show on my face. In any event, it was nice to hear. Even if family and friends are contractually obligated to tell you how great you look at the end of cancer treatments.

I have been losing time again. As in I have to look at a calendar several times a week to remember the day of the week, date, etc.   I don’t think it’s remnants of chemo brain so much as time this past year, particularly the last two months, has ceased to exist in any meaningful way other than how many more months, weeks, days to the end of treatment and how many days, weeks, and now months, it has been since my sister passed away.  I’m trying really hard not to focus on how many years (!)  until I can truly say I beat this and be certain.

Can we just talk about my colonoscopy?

Posted on by mainelyhopeful

I cannot believe you even opened this.  Why would you want to read about that?  It happened. The end.

In other news, life is slowly returning to some semblance of normal. Last week I had the above mentioned date with a man and his colonoscope, which took up more of my week than it should have.  That was my first week post treatment and it just seemed like business as usual. This weekend we went out for dinner and a movie and had a great time with family and friends enjoying a lobster bake and being treated to an air show.  I realized at some point over the last couple of days that next week I can actually make plans, do as I please, be spontaneous (hey! it could happen) or do nothing at all. I was asked to accompany my mother to the coast for a business appointment and I quickly did a mental inventory of what my week looked like and it was like this  [                                          ]  a blank canvas. No appointments. No one drawing blood, inspecting skin, zapping me, poking me, asking all sorts of intimate questions that are, quite frankly, none of their business.  I’m not sure what to do with all of this new found freedom. There is a lot I should do, but once I fill that time up with busy work it’s no longer a lovely white space to do as I please in.  I want to turn calendar pages that are clean and white with no appointments penciled in. Just rows of empty uniform little squares to fill however I like.  I could get used to this.

oh! and my Bucket List is coming along nicely.  With the help of Thing 1 and his lovely wife I will be a grandmother around tax day!   I guess the rest of the list is up to me. Unless someone wants to get a tattoo for me?  No?   sigh

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9 long months

Posted on by mainelyhopeful

Today I wrapped up treatment for breast cancer after 9 long months. I still have to take Tamoxifen for 5 years and have regular followup visits with Oncology, but the biopsies, surgeries, chemo and radiation are behind me.  I celebrated by reading and baking in the sun for 30 minutes until that tiresome little voice in my head (which sounds annoyingly like my med oncologist) reminded me that my skin had been damaged enough for one summer and I get more than enough Vit D in my supplements and diet.   I will celebrate more this evening with a bottle of champagne and this weekend with the family at a concert.  Then it’s back to more fun.  Colonoscopy on Wed (btw, don’t ever mention rectal bleeding to an oncologist, even in an offhand … it only happened once, weeks ago.. kind of way or you WILL get your ass reamed sooner than you had planned), then catching up on routine health care that has kind of been sidelined, a physical, dental visit and eye doctor. By mid-October I should be all tuned up.

Cancer was actually evicted way back in November by my surgeon, but she didn’t get all of her shit out of my body until just now.  Tenants have all the damn rights, don’t they?  It occurred to me today that the last time my body was held hostage for 9 months, I gave birth to my first daughter (number two arrived slightly undercooked at 34 weeks).  This time all I get for my trouble is some scars, gray hair and a little PTSD that I’m certain a weekly infusion of  martinis will clear right up. 

There were lot’s of congratulations and a few hugs from the staff today and even “we’ll miss you”.  I had to say “no offense but I won’t miss you”.  There is a Survivor’s Day planned on Sept 8. I receive notices of these events periodically. I have had zero interest up until now.  I was told I should attend this next one and how nice it would be to see me in “happier” circumstances. Nice sentiment, but the idea of hanging out at the cancer center for anything now that I don’t have to has no appeal. Even if there is “really good food” and balloons.  Maybe I will feel differently when there is a little time and distance between myself and the good folks at the center, but not yet.

Today was also bittersweet. My sister was looking forward to celebrating the end of treatments.  I thought of her all day and missed her terribly. I was pretty sure at 1:12 p.m. I heard a big WOO HOO all the way from Heaven though.

All in all this past year has pretty much been a shit storm but I made it.

A break up is imminent

Posted on by mainelyhopeful

 

Dear c,

After a 9 month whirlwind of mammogram, ultrasounds, biopsies, surgeries, heart scan, bone scan, chemotherapy, radiation, uncertainty, fear and exhaustion I am cutting you loose after my last dose of radiation on Friday.   I am giving you more notice than you gave me, btw.  You’re welcome.

Obviously this relationship was doomed to fail from the beginning.  I never even respected you enough to call you by your favorite title.. “the Big C”. You’re nothing but a little c to me.

I’m over you.  I’m not taking your calls. Oh sure, our mutual friends at the Cancer Center will want to get together periodically and reminisce about our relationship.  I’ll humor them. It’s the least I can do after how hard they fought to get me away from you. Eventually they will grow bored and our visits will be fewer and further between until you will be nothing but a footnote in my book of life.

So long, c. It’s not me, it’s you.

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

Posted on by mainelyhopeful

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.

Seriously?

Posted on by mainelyhopeful

“The best drama comes from otherwise normal human living and the best comedy comes from awful shit.”  Isn’t that brilliant? I wish I had said it. I was chatting with a friend about television series we both watch and like me, she is kind of drawn to the comedies about illness, addiction, criminal activity etc and she made that comment.  Like me, again, she has recently suffered the unexpected loss of a loved one and had to deal with all that followed.  Today my mother and I went to see about a grave marker.  The lady that waited on us knows us all and was visibly upset about my sister.  We saw one we both liked almost immediately but we did not want to order anything until her significant other could give his opinion. We were just doing the preliminary footwork.  We were standing around chatting and the woman asked how I was doing. I assumed she was referring to my cancer so I said “almost done treatment”.  She looked shocked and I couldn’t help but say “seriously? you didn’t think this hair was a fashion statement did you?”. She laughed and then told me about another woman she knows undergoing treatment whose hair came in gray and curly and how lovely it was. Then she launched into some pretty horrifying stories about people she knows with cancer that now have mets to the brain.  Now my mother has just buried one daughter and the other has cancer. She looked shell shocked.  This conversation went on for what seemed like forever until she paused in her litany of horror to mention how one of them got shingles in the midst of everything else and I pounced on that. I told my mother I needed to look into whether I was at greater risk for shingles having had radiation and after successfully changing the subject we made a hasty retreat.  I had a phone conversation that went pretty much the same way over the weekend.  Someone knew someone with the same diagnosis as myself and they died.  I offered their stage may have been higher, their treatment not as aggressive, etc. and was told “If you can think that way, that’s good!”   Thankfully, as my television preferences will attest, I have a pretty twisted sense of humor and I am able to laugh comments like that off and even make plenty of distasteful comments of my own (about my own situation, I would cut out my tongue before I would joke about anyone else’s cancer), but you gotta wonder what the thought process is when people let words just fall out of their open mouths with no supervision whatsoever. I mean, seriously?

Prior to that fun little field trip I had my radiation treatment.  Today they had to take measurements and make plans for the final 8 treatments that will be just to the tumor bed itself.  The two techs explained everything they were doing and said the doctor would be in to make his recommendations.  My doctor was off today so it would be the “other guy”. I was drawn on and measured and repositioned and was lying on the table when the doctor came in. He said not one word to me. Never made eye contact or acknowledged me in any way at all.  He peered at me and made a few comments to the techs and walked out. I felt like a disembodied boob.  It was seriously the most uncomfortable feeling I have had since this entire thing started.  Seriously.