Archive for January, 2010

now cancer is back to messin’ with my mind……

January 28, 2010

153 days post chemo and 93 days post radiation and I’m feeling pretty good.  (Well, that’s a lie, but it’s my story right now and I’m sticking to it.)

This morning while in the shower I began to do my mental rundown of all the necessary tasks of the day, except it morphed into the cancerland countdown of fear again.  Unfortunately, it required more than one hand to count them today. 

It was number 7 that made me cry.  New development in my household…….husband has sudden serious medical malady of his own.  Now I feel like it is really all on my shoulders to prevent the creation of two orphan children.

In the meantime, I will go to work (thankfully I have a good job) and then hustle off this afternoon to Toledo for my bimonthly blood test.

Zometa #4

January 18, 2010

Today is a “hospital Day”, at Hickman Cancer Center for an appointment with yet another new medical person, Dr. Rubin’s Physician’s Assistant “Jennifer”.  I’m just a bit disappointed to not see the R-man, but I hear she is wonderful, so I guess I get to add yet another business card to my towering stack of all the medical professionals I have met who I’ve shed my  shirt for. 

Today is also my fourth Zometa infusion.  Getting this drug is like a walk in the park compared to chemotherapy.  I receive the infusion in the chemotherapy center and feel just a  little guilty walking in and then out again in an hour or so when the chemo people are in for the loooong infusions.  Just to make sure it is not completely pleasant though, I bet I get admonished again to “drink more water to plump up your veins!”   Kind of an annoyance, that nurse.

All in all though, I know I am lucky.  Lucky to have the most difficult part of cancer treatment behind me, and a nice break to build up my strength and spirit before the reconstruction surgery this summer.  Check back tonight, I’ll let you know how it goes.

since you asked………

January 17, 2010

Since I’ve had this discussion more than once in the last few weeks I thought perhaps it would be good to write it out.  There are so many things you can do for your friend who has a diagnosis of cancer if you live close to them, and so many things you can do if you don’t live close to them, but really want to give something that will make a difference.  The list that follows is what worked wonders for me, and is by no means in order of importance.  I was luckyluckylucky to have so many friends step up to the plate to be a visible presence at the most difficult time in my life, and each one gave in their own unique way.  This list is also what worked for me.  It might not be exactly the best thing for you, or for the person you love who is sick, but if you catch the spirit of the gifts listed below, I’m sure you can think of something you can give, something you can do that will splash some love and joy into the day for your friend.

My friends at work got together soon after my principal broke the news about my breast cancer and impending surgery and sent me a “Battle Bucket”, one of those great big plastic tubs like you might buy to pack with ice for a cold drinks at a party, and it was filled with the following items:

  • a really nice notebook and new pens for taking notes at doctors offices
  • a few really nice water bottles with “straws” that flipped up…I LOVED these and have used these everyday.  It is so important to drink lots of water through the surgery/chemo/radiation process, that a few of these water bottles is a good idea.
  • Lovely herbal teas.  I received a few packages of really really nice herbal teas.  I was quite lucky to never have a problem with nausea, but ginger teas have a reputation as a mild remedy for upset stomach and nausea.  I was never much of a tea drinker, but have come to appreciate these really beautiful teas.  Try looking at a health food store, or if you are lucky enough to have some kind of specialty food stores nearby, as the varieties outside of the regular grocery store are really unique and make you feel so special when you use them.  Also, some kind of sweetener is a good idea, a bottle of local prepared honey, or my BIG favorite by far was the little bottle of Organic Blue Agave Sweetener from Trader Joe’s.
  • A “sleep mask”.  Mine was purple velvet on one side and black satin on the other side and filled with some kind of soothing herbal mix and I LOVED IT!  It was great when I needed to sleep during the day to slip that on, so when I fell in and out of sleep consciousness, the world was still dark to me.
  • A new heating pad.  I didn’t use so much for my body, but it was so soothing to warm up my bed before I laid down for a nap.
  • Nice lotion.  Not so much the scented stuff, but the “Intensive Therapy” kind of lotion.  I received a BIG bottle of lotion that I know must have been expensive that I would have never spent the money on for myself, and every single time I used it I was grateful I had it.
  • Lucky charms.  Not the cereal, but if you have any kind of lucky coins, jewelry, amulets, etc. your friend might be touched that you would give/share them.  I know I had a number of people give me little “good luck tokens” at various times, and each time, they came with little stories that I loved.  They are ALL MY FAVORITES, but I especially loved it when my teacher friend at work pulled an “Angel” coin out of his pocket that he carries with him at all times, and gave it to me when he first heard my diagnosis.  Or when the children’s librarian at our local library gave me her chemotherapy bracelet she wore when her husband was gong through chemo.  It is silver and has “number” charms one through four, each one representing the chemo treatment that I had to live through.
  • Little boxes of stationery.  I wrote many thank you notes, and to have the boxes of stationery with a package of stamps tucked inside was helpful.
  • Hats.  Anyone who goes through chemo needs at some point some kind of head covering.  This one may be kind of tricky to get just right, but your effort will definitely be appreciated.  Find out what kind of hat/scarf/head covering your friend likes best first.  My favorites during the summer were a white ball cap that said “Cancer Sucks” from cafepress.com.  Every time I wore that to the U of M infusion center where all the cool cancer patient hung out, people would comment.  They all felt the same way.  I found a pattern for a chemo-cap that is really easy to sew out of fleece that I have made myself lots of hats so far for the winter here in Ohio.  In a post soon to come I’ll give the directions.  If you need the directions right now, send a comment and I’ll email them to you.  The trick with hats is to get ones that are really super soft on the inside, and a good fit.  Nothing tight or scratchy.  I LOVE my winter hats that I can “roll up” and roll down to cover my ears and neck as I go through the day. 
  • New pajamas.  I was lucky here.  Since super-nurse-Julie was organizing my Battle Bucket, she knew I would want and need something that buttoned up the front, plus I HATE hospital issued “gowns”.  With a bilateral mastectomy it is very difficult to put your hands over your head, so a button up the front top is necessary.  She also included a couple of rolls of really pretty ribbon to tie up my drain tubes.  I ended up not needing these because the “bra” I was sent home with from the hospital that held my dressings in place had velcro tabs for that purpose, but I used the ribbons to tie together the many cards I received plus a bunch of other uses when I was home bound for that time.  I ended up going to the local Goodwill store and bought a few mens silk shirts to wear also for pajamas and around the house.  Since this was in the spring/summer the silk was cool, easy to get on and off, and it didn’t matter if it got messy since I only paid a few dollars for it anyways.  I am keep those for this coming summer when I’ll be doing my reconstruction surgery.
  • Little bags of hard candy.  I don’t really eat candy, but my kids LOVED the fact there was something in that bucket for THEM!  If your friend has children, remember that they love little presents, too, so if there is something small that you can have for them, especially if you are taking something BIG to the cancer-girl (or cancer-boy), trust me…..your friend will truly appreciate your thoughtfulness if you remember their children, too.
  • Reading material.  This is a little more difficult to pin down perfectly, but what worked best for me, was magazines, books with short stories, or books that I didn’t need to think too hard about.  The phenomenon called “chemo-brain” was a real thing for me.  I couldn’t possibly have read a novel during that time, but short readings worked well.  I especially loved the funny stuff. 
  • Meditation CD’s.  I received lots of these, and I loved them all.  I spent a fair amount of time in bed quite uncomfortable, and the soothing music was good for my head.  One CD in particular really got me through radiatio, some kind of chanting CD by the Dali Lama…..it really enabled me to relax at the worst moments.
  • Not in the “Battle Bucket” but from the same wonderful colleagues, a whole load of frozen prepared meals from one of those places where they prep great meals, and all you have to do is open a couple zip lock bags and turn on an oven and a wonderful meal is ready in an hour.  We loved those.  It was so nice to not have to think about dinner…it was all ready to be easily put together.  The place here in Perrysburg is called “Super Suppers” (http://www.supersuppers.com/menu/locate_store.php?popup=true).  I’ll bet most cities have something like this somewhere.

Other things local friends did (or things I wish someone would have offered to do) in no particlular order:

  • Marvelous Marilyn came over every Monday morning and cleaned my kitchen.   Wiped down the counters really well, did all dishes and put them away, cleaned off the stove, swept the floor, went through the refrigerator and threw out old stuff, all that kind of stuff that for many weeks I was just not physically capable of  doing.  She would email the night before and ask if it was OK for “Hazel the Maid” to come over to be sure  we would be here, and I came to really look forward to her being here.  She became like a “mom” for me, and that was really comforting, and also completed a necessary household chore.
  • Neighbor Nancy would unannounced drop off a plate of cookies for my kids.  The kind of stuff that I would have made myself, but was not capable of doing.  I was so grateful for that.
  • Once a neighbor mowed the front lawn, that was a nice gesture.  Whatever outside stuff you have to do at your house, the “cancer-household” needs done too, to if it’s winter and you have to shovel your sidewalk, your friend probably needs it done too.  Just drive by their house with your shovel and do it, you probably don’t have to ask.  If it is Spring and you are planting your flower bed, ask if you can clean out their flower bed and plant something too. 
  • Child care………..oh my goodness.  I was SO GRATEFUL for the many friends who offered to take my kids, then 8 and 10, for a few hours, for the day, for overnight.  Having cancer during the summer when school is out was enough of a drag for me, let alone my kids.  There were lots of times when I was down in bed and had no idea where my kids were in the house or what they were doing.  I hated that and felt bad about being a drag for them, and when the offer came for them to go with anotherr family and do something I was as thrilled as the kids were.
  • Household chores….once when I was in a bad state, super neighbor Faye stopped by to see me and on her way out asked if she could vacuum for me.  She ran that vacuum for a loooong time, and I appreciated that so much!  Again, if it is a chore that needs to be done in your house, it probably needs to be done in the cancer household, too.  Don’t just ask, “Is there anything I can do?”, rather ask, “Which would you like me to do first, the laundry or the vacuuming?  Or maybe you need me to go to the grocery store for you.  I have two hours (or whatever time you truly have available) that I am devoting to helping you today and I will feel good knowing I have done something you really need done but probably won’t ask anyone else to do.”
  • If your friend has a dog, it probably needs to be walked, played with, taken to the vet, or groomers, or the dog poop picked up.  If they have a cat, surely the litter box needs to be cleaned and new kitty litter needs to be put in.  Those yucky chores you just hate to ask people to do, but they still need to be done.
  • Automotive maintenence…does their car need to be gassed up before a trip to chemo?  Car washed? Car vacuumed?
  • If you are a neighbor, but not a close friend, this is a no-brainer…take the trash can out on trash day and then bring the cans back in.  Such a simple act, but it might be appreciated far moe than you realize. 
  • Speaking of neighbors, if a neighbor to the cancer household has a “yappy” dog, shut that dog up.  Once when I was sick as could be, my neighbor got a really horribly obnoxious yappy dog that was barking right outside my bedroom window.  It was one of the really bad moments for me to be so sick, home alone, and have an awful dog making awful noise.  Basically, make sure the neighbors are providing a peaceful environment.

This is by no means a complete list.  I’m going to go make a pie right now, and then I’ll start dinner.  I’ll try to get back to this later to finish this part of the list.   Tomorrow I have another Zometa infusion and appointment with a new medical person, Jennifer, Dr. Rubin’s assistant.  I’ll take laptop with me and maybe I can write the list of things “out-of-towners” can do to assist the cancer-family.

 

so the good news is….

January 14, 2010

I’m almost embarrassed to tell you just how happy I am over a phone call with a NP from U of M  yesterday.  We talked for a while about blood tests and the near future (still on a two-week blood test schedule for as far as the eye can see).  When we finished that discussion, she asked, “well, is there anything else I can help you with?”

I replied, “well, yea, actually there is…” and proceeded to explain my frustration with the latest recommendations for alcohol (none.  no alcohol.  don’t drink any.) from a local oncology nutritionist.  She quickly replied, “Oh, no!  We recommend no more than 5 to 7 alcoholic beverages per week for our breast cancer patients…” and went on to explain that she discusses this everyday with patients, is familiar with recent studies, and this is current recommendation at U of M.  I can hardly even tell you how happy that news made me!!  And yes, I did check..you can save up your wines, and skip a few days so you can have two or three on a weekend night.  Just no more than 5 to 7 per week. 

I can do that.  Not my favorite lifestyle change that has come out of all of this, but I can definitely do 5 to 7.

Of course I realize this is searching for the truth you want to believe.  I sure hope it is the truth.

back to blood tests

January 12, 2010

Since I am going back to the vampires again tomorrow for my every other week blood test, I thought I’d better have the results of the last blood test, way back in 2009 (12/30, I think.)  Since NP Joan is gone on vacation it was incumbant upon me to call for test results.

This time I didn’t have all the anxiety that zapped me just before Christmas.  Guess I’m finally getting mellow about it all.  Maybe the LACK of estrogen is responsible for my “c’est la vie” attitude.  Yes, the estradial test level came back at 2.  Remember, I need low estrogen levels for my maintainance drug to work properly. 

Arimidex is a little white nondescript pill that I greet every morning with, “you’re gonna go and save my life now little buddy, right?”  God, I hope this works.  Only time will tell I guess.

just curious…

January 12, 2010

3:01am…..do you suppose that hot flashes start at the feet and move up, or is it that I just am awakened by the action of ripping off my toasty socks in the middle of the night first?

and…I think NP Joan was right about chocolate fueling the fires….(damn!)…..had one of those really wonderful chocolate bourbon truffles last night from the Flying Rhino, and this one is break-out-in-a-sweat-on-the-cheekbones kind of intense.  gottta remember to eat those things earlier in the day.

tuesday 2:52 am

January 5, 2010

so.  along with the heat wave that comes from God knows what physiologic center of my body my brain serves up a heaping side dish of  “which doc is watching me for recurrance” anxiety?

Because at this moment I feel like I’ve been dropped like a hot potato for the next new case of cancer that walked through the door.  And there is certainly no lack of those.

Just try going back to sleep after that meal.

A New Year

January 3, 2010

So this has been on my mind since Christmas.  What does this new year mean to me?  What are my dreams for 2010?  To be certain, I don’t have any fantasies of forgetting about cancer, or being cancer free.  That will never happen.  I understand that now.  “Remission” is a concept….and one I’ll not treat my brain to until I stop refilling the Arimidex ‘script (around November 2014, if all goes well in the next five years.)   And for the idea of being “cancer-free”?  Not possible, I don’t think.  It’s kind of like being a mom.  Once you have a baby, that child is always a part of you, even when they grow up and move away.  Which, by the way,  is my plan for cancer.  When I grow up, it’s gonna move away.  Still in my mind though.

I could say that I’ve turned over a new leaf and I’m going to start living healthier, except…I already was.  I already was living a healthy life (stated with undertones of sarcasm) with lots of pysical and mental activity, eating right, was fairly well informed and doing good things for my community.  So I pledge to be healthier.  I am examining every bite I eat, adding the minutes of real exercise and reducing alcohol intake to a minimal amount, consumed only if seated at a meal.  I am meditating every day, examining my motives, and trading stress for zen, well, at least I’m working on that last part.  Even though I think I’m doing well when I step on the scales, I’ll be losing more weight. 

So this is what I want for the New Year.  Well, to be honest, I want a lot of things, but mostly what I want is to feel like I have made a difference.  I hope that I have influenced someone to take their health care seriously.  Not just in the real gritty mean streets of cancer land, but in all health matters….listen to your body.  (I do kind of feel like a hypocrite with that last thought, because I was the queen of denial last Spring.) 

I am still dedicated to the idea of using this stupid cancer as a teachable experience.  I don’t know exactly how to best do that, but I am trying.  I’d love it if my story became the impetus for someone nagging their mother, their sister, their friend, themselves to pick up the phone and make an appointment for a mammogram.  I hope that women, once in their Doctor’s office, or with a Nurse Practitioner, demand to be shown how to do a good and effective Breast Self Exam for themselves, and not feel uncomfortable about itGod knows if groups like the U.S. Preventive Task Force (see my post from November 19th) have their way, you’ll really be on your own with detecting breast cancer. 

So in the end, I refuse to say that 2009 has been a bad year.  It has been a hell of a year, but it could have been worse.  I could have had a Doctor who didn’t notice the lump…the same lump I didn’t feel.  I’m grateful for Cindy Parke (Certified Nurse Midwife extraordinaire) beyond words.  Without her experienced touch, I don’t even want to think about where I might be today.