oncology

Don’t ask

Posted on by mainelyhopeful

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Oh, I don’t mean you. You can ask me anything.  Don’t Ask is the red banner I imagine has been placed prominently across my medical file and/or employment files at my local hospital.  I had my 6 month check with Oncology yesterday and all is well on the cancer front, though apparently I am working on an ulcer. Maybe.  Or more likely my body is just reacting to the absolute clusterfuck my life has been for the past 18 months or so.   While discussing the possible causes of the stomach pain I’ve been having (yes.. I “went there” and anyone with a past diagnosis of cancer knows exactly where “there” is) and how I’m not sleeping much these days, I mentioned my husband had recently passed away.  It was exactly a year ago since she asked how my summer was going and I reported that my sister had just unexpectedly passed away.   Her face.  I almost felt sorry for her.    I was told I am doing “remarkably well” whatever that means.  Am I supposed to open a vein every time I tell someone new?  Wear widow’s weeds?  Image

As I was leaving she mentioned again how remarkably well I seem.  I told her I had no choice and she said “you can always crumble”.  I told her “not yet”.  Besides I got shit to do. I’ll schedule a break down for another time, thank you.

Last week I had a job interview.  The first step was a telephone interview with all of those ridiculous getting to know you questions.  Then I got to do it again face to face.  Things were going well until the interviewer asked “what is the biggest personal challenge you have had to face in the past year and how did you handle it?”  So, I told her.  Tissues all around.  This could go either way.. a pity hire or a big red banner across my file that says. Don’t Ask!   I’m okay with either.

I used the kitty graphic because those crazy eyes are exactly how I feel these days but the graphic below speaks to me.  I hope it speaks to you too.

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Navigating a new reality

Posted on by mainelyhopeful

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I’ve been pretty silent on the blogosphere. I’ve reblogged a few gems from some of the smart ladies that I follow, but otherwise have not had a lot to say. Mainly because life was becoming blissfully normal and really, who wants to read about the day to day musings of a 50 year old woman?  Nothing to see here folks.   I had planned to blog on the one year anniversary of my sister’s death.  That is coming up  on July 10.  Actually I planned to reblog the post I made about 10 days after she passed.  It’s not like anything has changed in that regard. She is still gone and we still miss her.   I was contemplating an update when I see my oncologist in July.  Truthfully I don’t expect anything new to come from that visit so unless something horrifying or hilarious happened on the way to the center it would be a pretty boring entry.

What I never in my wildest imaginings expected to be blogging about is the unexpected death of my husband.  On 4/29/13 we welcomed his new grandson in Texas.  On 6/1/13 we celebrated our 28th wedding anniversary with a trip to the coast that included eating lobster and looking for “treasure” in flea markets and antique shops. I looked for things to sell in my ebay business. He looked for vinyl and other collectibles that he could display in his “man cave”.  On 6/5/13 I spent the day setting up a charity lawn sale and when we both arrived home at the same time I told him I was too tired to cook and asked him to pick up sandwiches.  He did and we had a quiet evening.  He called a close friend and talked for a time, then called his son.  About an hour and a half earlier than he normally went to bed, he announced he was “freezing” and was visibly shivering.  I felt his forehead.. no fever. He was not sweating.  He had no other symptoms.  We both went to bed and slept normally. The next morning we were planning to visit our daughter in law before she flew home (she’d been here for a funeral) so he had the day off. We both slept a little later than normal.  When I got up he was in his recliner under two blankets. I asked he if was still cold and he said no, just achy and really tired.  While I made coffee he got the paper.  He didn’t touch his coffee or the paper and at one point just got up and went back to the bedroom. I asked if he’d gone back to bed and he said “for just a bit”.  I checked once, he was on his side facing the wall.  Fifteen minutes later I heard what I thought was loud snoring and went in. He was now flat on his back. I could not rouse him. I could not move him.  He appeared to be choking so I called 911.  While on the phone, he stopped breathing.  He was gone. Just like that. The EMTs were there in minutes and worked for over 45 minutes.  On 6/6/13 @ 8:26 a.m. my life changed forever.

Within hours my house was full of family.  My kids stayed with me for  more than 2 weeks (leaving in stages).   I had some wonderful quality time with the new baby.  I hated to see them all go, but my new reality involves living alone and doing for myself. I would love to hide under the covers or sit back helplessly and let others do for me, but that just prolongs the inevitable.

On the practical side there are decisions to be made, bills to pay, I had to buy health insurance for the first time in my adult life as we were always covered under his work plan (thank God I’m through with the expensive part of cancer treatment). I’m looking for work because even though my small business is making money, working alone is very isolating.

I guess I do have plenty to say after all. Huh, who knew?  Those of you who followed my journey through breast cancer are invited to follow my new journey through early widowhood.  I promise it won’t be all doom and gloom.  As is typical in our family there have been some hilarious moments that have you laughing/crying at the same time.

Remind me to tell  you about the financial institution that had me convinced someone had stolen my husband’s identity, had named names and was insisting I file a police report.  Only to find out it was their mistake after all (which I had been telling them for 2 days).  That’s a long story for another day.

They say God doesn’t give you more than you can handle.  He can stop any time now. I’m not the bad ass He makes me out to be.

In spite of it all, I remain mainelyhopeful.

Six month stay of elocution.

Posted on by mainelyhopeful

How does one end a blog? Do you just stop blogging or make some formal announcement?  I started this blog as a way to wrap my head around my diagnosis/treatment (a sort of self -therapy if you will) as well as to keep friends and family in the know without endless facebook updates. I would post a link to FB and those that wanted to could be informed.  What I didn’t expect to happen was finding a whole cyber community of other cancer patients/survivors/caregivers and genuinely wanting to keep up with them.  I never expected anyone outside my circle of family and friends to find, much less follow this blog.  That was kind of cool 🙂  I could just shift focus and blog about other things, but somehow now that I am done active treatment that just seems self-indulgent. At least on a blog that was specifically started to talk about breast cancer.  

So one final update.. I saw the oncologist yesterday and was given a clean bill of health. My tether has been lengthened to 6 months before my next check and the next time I have anything to report!

I’m going to continue to follow and comment on the blogs of the amazing folks I have met here in the blogosphere and who knows? I may decide I have something to blog about down the road but for now.. thanks for following along and all the support. 

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Just a quick post from sunny Texas!

Posted on by mainelyhopeful

Here on vacation with the boy and his missus who are awesome hosts as always.   The weather has been gorgeous! I was worried that my chemopause would make the heat unbearable but that hasn’t been the case.  It was only really hot one day and by evening was beautiful.  Apparently there is a Nor’Easter brewing at home. So sorry to be missing it.

I dutifully wore the compression sleeve while flying and had no problems at all. Maybe I wouldn’t have anyway, but why risk it? I’ll wear it on the flight home as well.

I am now able to cross one more thing off my bucket list. I got my tattoo on 6th Street in Austin on Monday.  I used a very scientific method to choose the parlor/artist. I picked the building with the friendliest looking storefront.  It was amazingly clean and bright.  I’m not sure what I expected but I felt like the whole process was more sterile than my medical treatment at times. The artist, David, was covered in tattoos and piercings (of course) as was the rest of the staff.  He was great, explaining every step, offering to stop if it hurt too much, and fast!  He sent me off with better skin care instructions than my radiation oncologist. Go figure! Just goes to show you should never judge someone by their choice of body art.  If you are ever in the Austin area, looking to get some ink (doesn’t that sound badass?) visit Affinity Tattoo and ask for David.  He won’t even question the fact that you are a 50 year old conservatively dressed woman with her husband and son along for support getting your first tat. No judgment.

p.s. it really didn’t hurt. It didn’t feel good, mind you, but I wouldn’t call it painful.  Maybe biopsies and endless needle sticks have desensitized me to pain or maybe I was just too excited to be getting the tattoo but it wasn’t bad at all!

As for the rest of the bucket list.. I’m working on it and while my bucket list isn’t all that long, my fuckit list grows daily.

Check out the chemo curls!  Still not long enough in the front to cut and style, but it’s getting there!

I went with the forget-me-nots. The skin looks angry and red, but that didn’t last long at all and it looks great now! Didn’t he do a great job?

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.

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.

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.

The Big C

Posted on by mainelyhopeful

Just finished season 2 last night. Anyone else watch?  I love the show, but it’s not terribly realistic.  For that matter neither is Breaking Bad, which is next on my list. Without giving away too many spoilers.. has anyone undergoing cancer treatment ended up socializing with their oncologist? Been told the only way to know if the chemo was working was by the severity of side effects?  Been asked to speak to a roomful of residents and told them all off? Attended their own funeral?  Run a 26 mile marathon after only 2 days of training while your blood counts are in the toilet?  Started manufacturing meth?  I feel like such a slacker and I’ve only got a little c.  I need to reexamine my life and do something really big. Or not.

On my own cancer front, I’m about halfway through radiation with only some slight pinking (pinkening?)  of the skin on my side.  I was told to put aloe on the “area of radiation”. I was not, however, told how large this area would be. That would have been good information to have from the beginning.  The area I have been treating all along is fine.  All in all, that’s my only complaint and it’s a minor one.  I missed a week of treatments and then the tech who I had been seeing daily was on vacation for a week. When she came to take me back on Monday she walked right past me and then returned a few moments  later for me. It took me a few minutes to realize she hadn’t seen me without a wig or wrap.  I’ve retired them for good.  And my eyebrows! They literally came in overnight. That was kind of weird. I have eyelashes again too. Little stubby ones, but nice and thick and full.  A return to normal, or at least a new normal.