family

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.

Happy Together

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Last night we were at a waterfront concert seeing the Happy Together Tour with the Buckinghams, Grass Roots, Gary Puckett,  Mickey Dolenz of the Monkees and Flo and Eddie of the Turtles.  Aside from my daughter I was probably the youngest person there!  When the performers would ask “What were  you doing when this song was a hit (in 1968, 1969! ?)” while most in the audience were in the  service or high school/college I was in the first grade.  I thought it was pretty funny that even with my (new!) gray hair I was one of the babies in the crowd.   We almost missed the show.  Youngest daughter (Thing 3) was in charge of the tickets. She was the one that first heard of it and talked her father out of his credit card to buy them. They were electronically sent to her email account.  All summer we were all thinking the concert was Sat, the 28th.  She thought it was at 5:30, I thought 7:30.  I asked several times this week for her to check. She finally did. Last night at 6:40.  We live an hour from the venue. Her father was out mowing the lawn and was very hot and sweaty. I had been doing housework. In 10 minutes we had both showered and changed while she printed off the tickets and away we went.  I said we would miss most of the show, not be able to park, etc. etc., but we wanted to see at least some of it for the 150.00 we spent on tickets.  We got there at 7:50 and had only missed some of the first group (The Buckinghams) and miracle of miracles there was a (free!) parking space right at the gate!!  We had front row seats.  The bands were awesome. Was Gary Puckett always so dramatic?  At the end they all performed together.  It was a great night out. My daughter snagged a guitar pick from the Grass Roots guitarist and she and my husband both got Mickey Dolenz autographs.   Since we missed dinner, on the way home we stopped off for a plate of eggs and finally got to bed well after midnight.

Since I’m having radiation daily, not to mention the emotional upheaval of the last few weeks, I’ve been very tired. I planned on a quiet, restful Saturday so I would be fresh for the concert and a nice dinner out.  In order for that to happen I didn’t stop all day Friday. I cleaned the house from top to bottom, did all the laundry (including hanging it out), the daily one hour round trip for treatment, did  groceries, and spent several hours at my desk.  Just as I was about to take a hot bath and relax, we were flying down the highway to a concert.  I’m glad I ignored my knee jerk reaction to stay home and just let the two of them go.  All my life I’ve been a planner (and bit of control freak) and I’m sure I’ve missed out on a lot of fun because I hadn’t planned it ahead. I’m the least spontaneous person I know.   Maybe cancer has given me a gift. After all, I didn’t plan on having cancer or spending the better part of a year fighting it, but there it is. It hasn’t stopped me from living my life. I’ve just made room for it (for now).  I didn’t plan on losing my sister in such an unexpected and heartbreaking way, but that happened too and we are dealing with it and going on because we have no choice.  One thing she always did was make time for fun and family, even if it meant letting things go that she was just too tired to do like housework or staying on top of other responsibilities. It drove me crazy at times but I’m so glad now that she knew what was important. Certainly not planning out every minute of your day/week.

Thank you, Debbie, for that. And…well.. Fuck you, Cancer.  (no one really thought I would thank cancer, did  you?)

It was always Debbie and Susie

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Growing up we were Debbie and Susie. Two sisters, one blond and one brunette, two years apart. Like all sisters we played together, fought bitterly, made up, giggled, plotted, fought some more and managed to reach adulthood without killing each other. I was the master at pushing her buttons until her son came along and installed new ones.  He came along exactly 6 weeks after my first daughter so we experienced first time motherhood together.  As we raised our families the arguments were fewer and further between but we could still piss each other off like no one else could.   We both recently started watching Dark Shadows on Netflix. She was many episodes ahead of me and wanted me to catch up. Watching reminds me of when the show aired originally.  I was 3 or 4 and she was just starting  school. I would stand in the window and watch for her bus.  When “my Debbie!” appeared, I knew it was time for Dark Shadows. We watched together every afternoon.   In the last few years Debbie has gotten to experience being a grandmother to 3 adorable little boys.  It made me laugh when one of them would refer to her as My Debbie.

Debbie was diagnosed with Lupus when she was in her 20s.  She was never exactly healthy, but never really had any of the bad flare ups you read about.  She suffered from terrible migraines, but so did my mother and myself. She had a lot of rheumatoid symptoms and was on pain medication most of the time. But during all that she raised her son, returned to school in her 40s, got her teaching degree after subbing for many years and was excited to land a job teaching 7th graders.  I thought she was insane for picking that age group. She loved every minute of it.

When I got my cancer diagnosis she took it harder than any of us.  She cried so much that at one point I told her to “dry up” or I wouldn’t talk to her.  She didn’t cry in front of me again, but I’m sure she still shed plenty of tears.  The day of my surgery she received a call from her doctor who had been going over some recent lab work.  At that point she had been experiencing horrible infections for months and antibiotics were not working. He suspected CVID (common variable immune deficiency). None of us had heard of it but she met with a specialist who agreed and wanted to start her on infusions of intravenous immune globulin (IVIG) as soon as the following week.  A little Internet research prompted her to ask for a second opinion as this treatment would be administered once a month for the rest of her life.  The 2nd doctor would not agree with the diagnosis until he ran his own tests.  Each time it would take weeks to receive the results, at which time he would decide one more test was necessary, then one more.   By the time the diagnosis was confirmed, treatments were agreed upon and the insurance finally approved them (but only for 3 months) it was 7 months since the original diagnosis. She had two treatments and was feeling better than she had in a long time. Then, one week after the 2nd treatment she passed away in her sleep. It was July 10.

My last entry on this blog was July 9. I was outraged that my radiation had been cancelled and I was going to have to tack one more day onto the end of my treatment.  She read the blog and called me to commiserate.  We spoke for over an hour. She had had a relaxing day reading in the sun. When I saw her over the weekend I had loaned her a stack of books and her plan was to alternate one book for pleasure with one for her curriculum planning.   18 hours later I was standing over her bed where she looked like she was sleeping peacefully, curled up on her side like she had slept every day of her life.  It’s been over 10 days and it still doesn’t seem real.

I returned to treatment Monday, now a full week behind schedule.  I commented how f’ed up it is that cancer treatments feels like a return to “normal”. She would have appreciated that, along with the black “fuck cancer” bracelet I have taken to wearing every day.

I miss my Debbie.

Image

Got some good wishes in the mail yesterday.

Posted on by mainelyhopeful

ImageSomeone gave my name to this wonderful organization who sends a head wrap to any woman suffering hair loss due to a medical condition. The wrap, or “hug for my head”  I received is absolutely beautiful. I love it and will wear it often.  What was even better than the hat was the card signed by every member of the staff with a personal message to me.  It will be kept and cherished along with all the cards I’ve received from friends and family.  If you’ve never heard of them, here is the link. I would like to make the donation of a hug or two myself 🙂

http://www.goodwishesscarves.org/index.html

 

 

Yesterday was the relay for chemo

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And I was the baton. My mom brings me for my treatments every 3 weeks and soon that will increase to every week.  The cancer center is 30 minutes from my house but only 15 from hers. My house is also 15 minutes from her’s, but in the opposite direction. Normally she picks me up making it a 45 minute trip for her. She’s happy to do it but I feel kind of bad, especially in bad weather.  Yesterday my dad collected me, dropped me at mom’s and she took me to the center. Later we went back to her place where my husband picked me up after work. I’m happy to report no one dropped the baton and we were even fed and got to visit with my sister and her significant other!  It was a nice day in spite of the reason for it.

Chemotherapy went well, blood work looked good and as usual the nurses were great.  I had a new one this round. She was very efficient but joked around and the time flew right by. Though this was my 3rd treatment it was the first time I was actually in a chemo bay. I had a nice corner unit that was warm and sunny, a comfortable recliner and television. I had my “chemo bag” with a few comforts from home and a novel. Oh I should mention, not everyone was comfortable. My mom kept sliding off the poorly designed couch and was finally given a straight chair to prop her legs on.  I was teasing her it’s because she’s so short, but that couch did look pretty uncomfortable. I offered her the recliner, but for some reason no one ever takes me up on that.    Though the bays have a little privacy in the way of curtains you can hear what’s going on around you. One lady started walking from bay to bay, wheeling her infusion pump along, asking people about their diagnoses and treatment plans and going into great detail about hers. Mercifully she ran out of steam before reaching me.  There was a bit of moaning and complaining going on and you didn’t have to look around to know it was coming from the men.  My nurse said that’s usually the case and we started chatting how men generally do not take illness and pain quite as..umm.. stoicly as women do, which prompted this little joke from her:

A husband and wife presented to the hospital in labor. Once settled in they were told about a new experimental option where a percentage of labor pain could be transferred to the father of the baby allowing him to share in the experience while making it a bit easier on the mother. They both agreed. With the next big contraction he got 25% of the pain and exclaimed “That was nothing”, so they upped it to 50% for the next one.  He still insisted it wasn’t bad at all and was starting to wonder what all the fuss was about. Finally it was upped to 75%.  The baby was born, mother was happy with the small amount of pain and her husband was still amazed at how easy it was.  Later when he returned home he found the mailman dead on the porch.  HA!

I did end up fessing up to only taking half the prescribed dosage of the steroid following my last infusion. It wasn’t deliberate and I’m still not sure how I managed to mess it up, but I didn’t have that big steroid crash that left me feeling so bad the first time around, nor did I have the terrible acne that was attributed to the steroid. My appetite didn’t rage out of control and I slept well. I was prepared for a lecture and a list of reasons I had to take the higher dose, but am happy to report I can remain on the smaller one.  Any time I can take less of any medication, I’m all over it, but especially this.  I like to call it Forrest Gumping when someone in the family does something kind of boneheaded but it works out to their advantage.  So this week I am proud to say I Forrest Gumped my way into less medication and less side effects. Chocolate anyone?

Today’s smile

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Usually when Fed Ex or UPS shows up it’s with packages for my ebay store. Nothing too exciting so I ignored the bell because I was doing housework commando (bald).  When I did grab the package I had a delicious surprise from my cousin and her family.  I’ve already eaten one and now I need to hide them before the mister gets home.

Shari’s Berries

So is this supposed to make me a better person?

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I read these blogs by cancer survivors and other women just starting out on their own journey as I am and it seems like there is so much hope and inspiration I want to just soak it up like a sponge. There is plenty of sadness too and while I don’t turn away from that.. I just don’t claim it as mine.  I am not particularly religious, though I do consider myself spiritual. I have a faith in God that never waivered even as I walked away from my childhood church and I know I am being prayed for by people with much greater faith than my own and I am grateful for that. Maybe this is my test?  Maybe I am supposed to learn patience?  I have no idea …but today I would have been happy to learn where the item I needed to ship out was after promising it would go today. I wish I hadn’t had a small melt down and decided to shut down my business if I was going to have to ask for help finding things (I didn’t, but the possibility remains)  I would love to be this always calm and serene patient not causing any trouble to those around me, soft spoken and sweet and always thankful.   But get real.. I had a lumpectomy, not a lobotomy.