Friday, January 18, 2013

Congratulations Sister!

This has been a busy, busy week.  It turns out that cancer is not just a crappy condition, it is a J-O-B!  And I was under the impression that I was retired.  Done with work. It turns out I'm just a dreamer.

On Tuesday I had a medical port installed in my chest.  This is a small medical devise that's put under the skin with a catheter connecting the port to a vein.  The drugs can be injected and blood samples can be drawn with less discomfort than a typical "needle stick".  My arms and hands were very black and blue and since I have small veins with a bunch of valves (whatever they are) so getting the needles in for the chemotherapy and blood work was becoming an issue.  Thus the ports of Portofino, St. Tropez, Monaco, Nassau, the Grand Cayman, and so on, have a competitor - The Port of Linda.  My port delivers ship loads of drugs and carries out ship loads of blood work without any stress on my veins.  My friend, Mary, gets ship loads of dialysis through the Port of Mary. 

Here's what the medical port thing looks like according to Wikipedia:




We got up at 4:00 AM and arrived at Hillman Cancer Center at 6:30 AM on Tuesday. I had the port put in as scheduled at about 8:00 AM after I was good and drugged up for a long winter's nap for this minor surgery.  I was in a light anesthesia, sort of like for a colonoscopy, which means I don't remember the surgery or some other chucks of time during the day. But it made me feel just fine for the rest of the day which was really, really long. The installation was just the beginning.

At 11:00 when I was barely semi-awake I had a CT scan and then a doctor's appointment at 2:30. I napped in the doctor's waiting room. Minor surgery can make you majorly groggy, maybe somewhat incoherent, and really, really, sleepy which can only enhance the incoherence and make you look ridiculous slouching very unladylike, in a doctor's small waiting room chair, lightly snoring and maybe dribbling some. Scott, however, was snoring much louder. We didn't get home til about 4:00. And I, of course, went right to sleep. 

Now for the really, really good news
I had very good doctor's appointment!  The tumors have already shrunk 25%!!!  The doctor says I am doing EXCELLENT at a 25% reduction at this point in my treatment and my body is responding very, very well to the chemotherapy.  I have a little bit of low potassium and may need to get a prescription for that if I can't eat enough stuff to bring it up.  I'm going to be like a monkey and feast on bananas.  A minor problem in the big picture. 

My chest/shoulder is a little sore from the port and I am still very groggy because yesterday I had the long chemo treatment which is down to about 10 hours from 12 now. This treatment starts cycle 3 so I'm 1/3 of the way through the 6 cycles and so happy I already have had some improvement. Hope is everything, and now we have some.

Prayers are working.  And we owe them to all of you who continue to surround us with your love, prayers and constant words of encouragement.  We are so grateful to be blessed with such a wonderful family and the gift of loving friends.  This has become very much a family fight for me, my beloved Scott and Dean, Kathy, Kim, James and our precious grandchildren.  You have all enriched our lives and made this challenge much more bearable.  Thank you, and know that we are praying for you, too.

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Monday, December 31, 2012

Hair Today - Gone Tomorrow

One more side effect of my chemotherapy turned up a couple of days before Christmas.  There seemed to be a lot of hair falling onto my clothes, getting on my hairbrush and comb. I figured  ever the observant of all things hair related right now  that the thinning hair I'd been told could happen had arrived.

So, I decided my best option was to call my BFF Ronnie and ask her to give me a fine looking short, pixie like new-do.  She cuts her own hair, her husband's hair, the kids' hair, and the dog's hair, so I felt confident that this was a job she could undertake with a great result that I'd be happy with.

When I got to her house she escorted me to "Ronnie's Hair Salon" which is also "The Laundry Room at Ronnie's House" most of the time.  I sat in the salon chair which converts to a plastic folding chair  when there is no hair client or back yard picnic. 

Next she brings out the "Hair Salon Beauty Box Tool Set."  This box looks just like the green metal one we have at our house in which to keep our hammer, drill, wire cutter, saws, screw drivers, sander and sand paper, wrenches, grass trimmer, nails, hooks, and other general tools we seldom use but still like to have.  Ronnie's box is silver though, and I am certain, and somewhat alarmed, that I've made the wrong choice in beauticians.  Is she going to use the wire cutters? Sand my hair off?  Tie my hair to a hook and string me to the ceiling laundry clothes line and saw my hair off till I drop back into the salon chair?  Use the grass trimmer?

But no - she roots through all the tools and comes up with some real hair clippers and scissors and gives me the beautiful pixie cut I was sure would be a great solution to my thinning hair. 

Take a look:

Not even a week later after shampooing the cute pixie a handful of hair the size of a tennis ball came out and I knew thinning hair wasn't the problem.  I was experiencing a very unique look:  bald on part of the left side of my head, thinning hair on the top of my head, and a pixie on all the other parts.  So I sat and cried for about 20 minutes, decided I was tired of worrying about something so minor, looked forward to the time saver no styling, blow-drying, combing, brushing coloring, trimming, etc., was taking up, calculated the savings on shampoo, conditioner, hair mousse, hair spray, combs and brushes and resolved to become the senior Sinead O'Connor. 

Unfortunately, that very day I had a doctor's appointment and was going to have to go with the  bald on part of the left side of my head, thinning hair on the top of my head, and a pixie on all the other parts to see the doctor, nurses, office personnel, greeter, visitors, and so on.  But, I also needed to go to the wig shop at Hillman Center to see how to put the dang thing on because I hadn't worn it yet since I had the cute pixie.  The wig lady looked mildly aghast at my look and offered to shave my head as she gently suggested me that my current look wasn't a good one.  And so, I ended up with my second free hairdo in less than a week.  And a wig wearing lesson and a new  hat for my bald head.

Here's the new bald look and you can see a little bit of the acne thing going on, too, but I got some new medicine which seems to be helping with that.  I notice I have a perfectly shaped head and pointy ears like Dr. Spock. And the blonde hair I claimed to have will now universally be known as a fraud. I seem to have a lot of colors on my head: grey, brown, white, and a lot of bald spots.

Here is how my hair looked before in a picture I had on this site before because it's the only reasonably good picture of me and the always handsome Scott.

My wig looks somewhat like my hair did before the shave job.  What do you think?


I saw the doctor last week the day before the beginning of cycle 2 of my chemotherapy and the long 10 hour treatment.  All my lab tests were good and the doctor said the acne thing is actually a sign that the chemo is working.  So I was pronounced as doing very well and in quite good health to continue with the unfortunate and unhealthy cancer thing.

So now I'm dealing with 3 very minor side effects:  acne, baldness, and a little tired, but I ironed today.

And again, your prayers sustain not only me, but my beloved husband, Scott, our family Dean, Kathy, Kim, James, Aidan, Riley, Guilia and Luca.  They are my partners in this challenge and your prayers lift us all to the Lord.  For that we are so very grateful and our road becomes more bearable and hope prevails.  Thank you.

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Saturday, December 15, 2012

My M&M® Addiction

When our children were little I was lucky enough to stay at home with them.  This was way back in the dark ages when there weren't day care facilities or nannies.  Most women stayed home and took care of the kids and the home while the husbands went off to work.  Few families even had a second car so life revolved around family, home, and whatever was available in your own neighborhood. I was always busy though keeping up with 2 little kids who were 2 years apart in age, and sometimes my energy level would drop running after one or the other. 

I found that M & M's® really gave me the pick me up that running after the 2 busy kids required.  I'm not talking about a little, bitty bag of M&M's either.  I put one pound of M&M's in a one pound size Tupperware® square, put the container chock full of M&M's down on the dish drainer in the double sink, and get high on chocolate all day long.  The one pound bag of M&M's only lasted a couple of days and I am proud to say I never, ever shared one M&M with anyone including my incredibly precious children.  Chocolate isn't good for little kids, after all. 

One day, as Kathy got a little older, but not tall enough to see what was hidden in the dish drainer, she heard a by now familiar sound and asked, "Mommy, do you have M&M's in the sink?"  And, of course, being a responsible parent, I replied, "NO!!  Why would you think that?"  And so, from that point on I hid the M&M container in my underwear drawer, and who knows what those kids thought their mother was doing looking around in her underwear drawer so often each day.  I'm sure I marked them for life in some weird way.

I gave up the M&M addiction many years ago although at card club if there are M&M's, I fall back into my old habit.  I grab a handful of the tasty little morsels, divide them by color, eat any odd number from each color group so each pile has the same number of red, green, orange, yellow,blue and brown.  Then I can enjoy them one by one and keep the color groups equal.  I know it's a crazy addiction, and only a true M&M addict could understand this compulsion.

Since my cancer diagnosis friends have been generously bringing meals, treats, and taking care of us in all the wonderful ways they know and that we appreciate.  In with these wonderful and healthy meal gifts, suddenly bags of M&M's have started showing up and it has rekindled my addiction.   I'm now deep into my relapse. I've had them out in the open in a candy dish, but it seems Scott has developed a taste for them and now we have 2 addicts in the house.

I made it through my second chemo treatment again with no side effects except for a rash of bright red pimple like bumps on my face.  It's as if I've developed teenage acne that is taking up residence in the midst of the senior wrinkles.  It's not my best look, but if it's the only side effect I have I'll put up with it. 

This was my first 3 hour treatment - including the preparation, pre-medication and so on.  Kathy sat with me and Scott for a little while which was nice.  This time I had a roommate and this woman was a ball of fire:  she was reading a book, working on her laptop, talking on her phone, and knitting.   She also has lung cancer, but one different than mine, and that was also found incidentally due to some other problem.  Her chemo is different, too; she comes for 3 straight days of treatments each month, and since her husband still works, she is alone, but has figured out how to keep busy. Watching her wore me out. 

I'm noticing that everyone gets their own specific chemotherapy in their own specific way, and some people are alone for their treatments.  I am so very fortunate that I always have Scott and often Kathy with me for my treatments and appointments. 

Unfortunately, on the shorter days I guess I'm going to miss the raffles and the lunch wagon. On those days Scott the Butler will have to take care of getting me my coffee and snacks.

So treatment two is over, and again no side effects except for the acne thing.  I'm sure the M& M's aren't going to help that, but I hope they'll help the wrinkles.  If I gain some weight from all the chocolate I'm eating my face will fill out and then it will harder to find the wrinkles.  Right?

Again, your prayers, not only for me, but for my beloved Scott, our children and our family lift our spirits and remind us that there is still so much good in the world.

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Friday, December 7, 2012

My 1st Chemo Treatment

My first treatment went really well!  It was a very long day - about 10 hours but I was pretty comfortable for the whole thing.  Mainly due to the tranquilizer I insisted on.

It started with some chemotherapy education and a chance to ask some questions.  First I talked with my clinical trial coordinators and they told me how to manage my side effects, told me I may only have few of them, may not lose my hair but it might get thin, I might get to keep my eyelashes, and as for the eyebrows, the main brow may go but the wild ones will grow. 

The nurse went through the book I've been given to keep all my information, questions, test results, etc. in, and advised me to keep up my regular routines as much as possible even though I asked for a butler, cute laundry boy, and a maid, but the nurse thought I was offering her those services and misunderstood that I was the one who needed them. 

I sat in a reclining chair, they brought me warmed blankets, and Scott watched the television that was attached to my chair as he sat on the love seat beside me.  This room had space for 3 patients, but I was alone most of the time. 

Soon a volunteer came around and asked me if I wanted in on the raffle.  "What?  A raffle in a hospital?  How much does it cost?" I asked.  "It's free!" she tells me.  The prizes are things other volunteers have made - knitted hats, blankets, shawls, books, etc.  Since the cost was so affordable I agreed to participate and an hour later found myself the winner of the raffle!  I got a pink printed shawl with pockets.  Very nice!

Next up the lunch cart came and offered me a choice of sandwiches and soups.    In between all this, Scott was getting me water, coffee, and snacks from the stocked refrigerator.  I was getting the feeling that I was being treated pretty well under the circumstances.  Scott the Butler has a nice ring to it, don't you agree?

I was able to move around the floor and hall as long as I took along my drug pole with the IV bags.  I think there is some official and professional name for that stuff but you get the picture.  Also, I got to stay fully dressed the whole time, so there were no issues with those hospital gowns designed by patients who must occupy their minds and keep their hands busy with creative projects in other kinds of hospitals.

At the end of the day the staff moves patients around to consolidate the area to treat the patients more effectively.  Or Scott and I were snoring too loudly.  I ended up in a private room for my last drug infusion.  I had a bed and Scott had a recliner and we had a regular wall television.  Since it had been a long day, was now dark, and I had new warm blankets, I was back to a really deep sleep in no time.  The tranquilizer was still working, too, which didn't hurt. 

It seemed in no time at all, Becky the nurse came in and excitedly said, "You are done with your chemotherapy at last!"  Woken from this deep sleep, I sat up and said, "What chemotherapy?  I thought I was getting tests?"  Becky looked confused until she and Scott realized I had been dreaming, but I know that now my medical chart has a big red sign on it that says "Patient may be CRAZY, too."  I might end up the next time in the other kind of hospital getting chemo, occupying my mind and keeping my hands busy making hospital gowns if word gets out.

It's now two days past my first treatment and I have had no side effects or issues so far and expect and hope that lasts. I've been able to keep fairly busy and do my normal things, but going out and hitting the town seems off the calendar for now.  I admit that I’m a little weaker, more tired than usual, and short of breath especially on steps, but I have no real pain.
I will have weekly treatments and other appointments in between for doctor and other tests.  This will be the schedule for about 21 weeks.

For example:
Week one – 4 chemo drugs about 8-12 hours with labs, etc. included
Weeks two and three – one chemo drug (is one of the 4 above – just an extra dose) – about 2-3 hours with labs, etc. included
Week four - 4 chemo drugs about 8-12 hours with labs, etc. included
Then 2 weeks of one chemo drug and the cycle goes on at that pace for the course of the treatments. 

I expect this to work and to be in remission with all the  good medical care and I am so grateful for the prayers that so many are saying for me.  I know God is listening.

I am determined to keep my life going as is as much as possible for as long as possible and won’t hesitate to ask for help if I need it. I am very blessed with an amazing family and a wonderful support group of friends.
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