Five Down and Three To Go

It always amazes me, when I look back on time, how quickly it passes.  It seems just like yesterday that I was going in for my first chemotherapy treatment.  I still remember the anxiety and downright fear that I felt, and now here I am, on the downgrade.  I've completed the first round of treatments, and had my first treatment of the second round.  

This new medication is called Taxol, and it's side effects are quite different from the Adriamycin/Cytoxin combo.  I haven't had the problems with nausea at all.  In fact, I've hardly taken any anti-nausea medication since my treatment on Tuesday, March 24th.  The one side effect that is quite disconcerting is the muscle and bone aches and pains.  The two days after the treatment, I had zero energy.  All I wanted to do was sleep.  Then, the leg aches hit.  It's difficult to explain how they feel.  It's not like having the flu when you just ache all over.  It's more like twinges of pain that strike whenever, and the only way to relieve them is to move. They also make my legs feel weak, and I sometimes feel like I'm going to lose my balance or fall.  I was told I would have feelings of clumsiness, etc., and it's true.  I haven't ventured out yet, but I can't hibernate, so hopefully by tomorrow (Monday), I'll feel well enough to get out and do something.  

I've been kind of down in the dumps this week.  I think alot of that is because of the side effects of the chemo, but I also learned that a friend of mine who is fighting colon cancer found out that the cancer had matasticized to her brain.  It just seems so unfair that this is happening to her.  She lost her husband to cancer this last July.  It wasn't more than two weeks after his passing that she was diagnosed with colon cancer, and now this.  The doctors have told her she probably has nine to eleven months, but they are treating it aggressively with radiation and she has a fighting spirit.  If anyone can overcome this, it's Becky. 

Then, Pat and I were having lunch at Huntsman while I was waiting for my chemo appointment

and one of Pat's friends stopped by our table to say hello.  We all said this was no place to run into friends, because it meant someone was in some kind of medical trouble.  It wound up being his son, who was diagnosed with a hodgkins cancer of the blood.  He was in the hospital for aggressive treatment and would be there for at least another two or three weeks.  He's only in his thirties and has two little children.  Again, I'm wondering why.  

I know life is no respecter of people, and there are no guarantees, but sometimes life seems to be too unfair.  I'm going to be even more thankful for all of my blessings, because I truly believe

that I have been blessed in so many ways from the very beginning of this journey.      

The Good, The Bad and The Ugly

I didn't realze it had been over three weeks since I last wrote on my blog.  I guess there's been alot going on in my life during that time. I had my third chemotherapy on February 24th and things went so easily, I didn't have much to write about.  So, I took some time to do some things for alot of people that had been so good to me.  

My ex-sister-in-law had a knee replacement of February 17th.  She and I are still very close.  As a matter-of-fact, since we're the only daughters in our respective families, we consider each other our 'sister'. I've known Joan since I was a child.  She and my brother, Jack, were married when I was about seven years old.  I was the flowergirl.  I grew up with Joan as my sister, so even after she and my brother parted ways, we've stayed very close.  She has been here for me in so many ways since I was diagnosed with breast cancer. Her moral support and prayers have meant so much to me, so when she had to have a knee replacement I wanted to be there for her, too. She's staying in a rehab center right now, so I've tried to spend at least one day a week with her, taking her a fun treat and just visiting.  She's working really hard with her rehab, so she can get home and be with her daughter, Cynthia, and her family.

My niece, Lisseth, had her 50th birthday on March 1st, and my daughter,Erin, had her 33rd birthday on March 3rd.  That was a very busy week.  Lisseth's husband, Glen, and her daughter, Cristina, planned a big surprise party for her.  They had it a local hotel and her brother, David, and his friend, Rick, supplied the music. There were at least 70 people there and it was alot of fun.  Lisseth was totally surprised.  She was even in tears for awhile. 

Lisseth has been my #1 advocate since the very beginning of my cancer fight.  She has given me so much help and advice, and I love her dearly.   She has helped me with alot of my nutrition questions and has gotten me herbal medicines that have helped keep up my strength and energy, which is so important in this fight.  I'm so thankful Lisseth and I are such close friends and family, and I'm thankful I was able to help and support her on her special day.  

   Erin's birthday was two days after Lisseth's and it was a much quieter affair. Pat and I took her and her sister, Amy, and their children out for breakfast at Ihop. Then, Pat and Erin went shopping for a new car radio for her, and her son, Colin, and I went shopping for a gift from him.  He knew exactly what he wanted to get her.  It was the second and third books in the Twilight series.  We had to check out a couple of stores to find them, but we were successful, and he even found her the perfect birthday card.  That night we took the whole gang, all ten of us, to The Cheesecake Factory, for the official birthday dinner, and after making gastronomic fools of ourselves, we opened gifts and blubbered our ways home.  It was a relaxed, but fun birthday.  

Pat's sister, Pam, had her birthday the day after Erin's, and the rest of March looks much the same. It's the busiest birthday month in our family. Now that I've made my excuses for not writing on my blog for some time, I'll try to make some sense of my title.

This is all about being bald.  I've decided the good part about being bald is there's no worry about if my hair looks good or not.  It sure makes getting ready to go somewhere 100% easier and faster. I can get a shower, put on my makeup, get dressed and be out the door in forty-five minutes.  The bad part about being bald, is being bald.  I have a really difficult time not having my head covered around people.  I know some women are comfortable with being bald, but I haven't gotten there yet.  I can go with my head uncovered when I'm by myself, but I even have to have a hat or cap on around Pat.  He thinks I'm crazy, but I can't help it.  Everyone has always told me that I have such beautiful hair and now to have it GONE, it really is a blow to the old ego. The ugly part of this whole thing is when I look in the mirror, I think, "how ugly".  It isn't a pretty sight.  I know this is all temporary, and everyone who's gone through this has said your hair comes back even better, but it's long ways off, and I'm still having problems with the bald thing.  Maybe I'll get over it sometime soon. 

Yesterday, I went for my fourth chemotherapy, the last in the Adriamycin/Cytoxin series.  YAY! Anyway, while I was there, someone who had been going through chemo brought in a big basket of homemade chocolates in cellophane bags with a little poem attached, and I want to end this post with that poem, because it expresses so much of how I feel about this whole journey.

What Cancer Cannot Do

       Cancer is so limited... 

        It cannot cripple Love  

       It cannot shatter Hope

       It cannot corrode Faith

       It cannot destroy Peace

       It cannot kill Friendship

It cannot suppress Memories

       It cannot silence Courage

       It cannot invade the Soul

      It cannot steal Eternal Life

     But most of all...

    Cancer cannot conquer the Spirit!

     

Me Taking Care of Me

This week has been the good week.  I haven't had to take any anti-nausea medication since last Saturday, and there haven't been any aches and pains.  I feel absolutely normal, except my hair is gone.  I actually went to my hairdresser on Tuesday and had what was left of it shaved off. After getting in the shower for a second time and having another glob of hair in the bottom, I decided enough is enough.  I feel much better now, and I'm glad I did it. Now I've taken to wearing hats, caps, scarves and my wig.  

On Friday I had an appointment with a Physical Fitness Therapist.  Another amenity of the Huntsman Institute. There's a whole department called the Wellness Center that is all about caring for the whole individual, not just the cancer.  My appointment was to assess where I was as far as my fitness level and to design a program that will keep me in as good a shape as possible while I go through the chemo and radiation.  Then once I've completed the treatments they'll help me design a program to get me moving again and in better shape than I am now.     That was quite a mouthful. The assesment took about an hour and a half, and was pretty intense.  The thing I was the worst at was my balance.  I couldn't stand on my left leg and hold my balance for more than two seconds.  Wow, who would have thought.  Anyway, I meet with them again next Friday, after they've had a chance to go over my tests and they will set up a program for me.  

After that appointment, I met with a nutritionist, that gave me some very good information about breast cancer, some of its causes and nutritional ideas to help combat any recurrence. The most interesting thing I learned there was how much weight gain, especially around the middle contributes to breast cancer. I had to admit, that was me.  I've put on an extra twenty to thirty pounds over the last twenty years, and most of it has been around the middle. Not Good.

So, if I want to do something for myself, not only do I need to get back to a good exercise program, but I'm definitely going to have to change my eating habits. There'll be alot more fruits, vegetables and grains on my plate, and alot less meat. 

I'm really glad I did this, because it's something I can actually do for me.  So much of cancer treatment is following doctors' orders, and living with the side effects, aka-hair loss.  In order to be at all proactive, I really believe I need to do as much for myself as I can.  I refuse to be a victim, and I will not sit around feeling sorry for myself.  As far as I'm concerned that's the best way to be defeated by this, and I will not be defeated.  I'm going to beat this and come out a better person all around.      

 

Hair Today, Gone Tomorrow

Everyone I talked with at the Huntsman told me to expect to lose my hair by the second chemotherapy treatment.  In order to not be totally overwhelmed when this happened, on Monday, February 9th, I had my hair cut really, really short. It looked like a boy cut in the back, but I had a little side hair that I could comb forward, and I had a fringe of bangs.  My second chemotherapy was the next day, February, 10th.  I hadn't lost my hair, and I was anxious to show everyone that it was still there.  Pat kept saying, "you probably won't lose it".  Such positive thinking. Everyone liked the cut, and I wondered how long it would last.  

Anyway, I went through the second chemo without a hitch.  The Power Port worked perfectly. The first thing I have to do before having chemo is have my blood drawn to make sure all the counts are up where they should be.  If they aren't, I can't have the chemo.  So anyway, the  girls in the lab accessed my port with one EASY try, the blood was drawn, and a tube was placed for the chemo.  My lab work came back A-OK, so at a little after 9am, the chemotherapy began, and by noon, it was finished and we were ready to head for home.  

I stopped by the Wellness Center and set up an appointment to have a physical fitness accessment.  I haven't exercised since all of this began back in December, and I need to get back to doing something.  They have a great program at Huntsman, just another reason I'm so thankful I'm there.  From there, we went to the Pharmacy to pick up the medication I needed to take home, and surprise, surprise, both meds had been removed from the computer and no refills were shown.  For the next almost two hours the Pharmacy and I were chasing down my doctors to resubmit the perscriptions.  

Finally, at nearly 2:30pm, we were on our way home.  I felt kind of queasy on the ride home, and by the time we got there I was downright nauseated.  I immediatly took an anti-nausea, but it was too little too late.  I spent the rest of the afternoon and evening trying to get things under control, and finally succeeded after a good night's sleep and more medication.  My daughter, Amy, came over on Wednesday and gave me the Neulasta shot.  The rest of the day went pretty well, and I still had my hair.  

Thursday morning dawned with my whole body aching.  Dr. Ward's assistant, Dr. Haslam had told me the Neulasta shot would probably have a stronger affect, and it did.  Ibuprophen and a soak in our Jacuzzi helped some, but most of the day I felt like I had the flu.  It was definitely a down day, and even more so, because when I washed my hair during my soak, I got a handful of hair.  It was finally happening.  In a way, I was almost relieved.  I knew I was going to lose it, but I just kept hoping to hold onto it for as long as possible.  Well, here it was, reality was hitting me in the face.  I barely combed it, and decided not to touch it anymore than I had to.  I knew the next time I washed it, it would all come out, so the answer to that was hold off on washing it.  

That lasted till yesterday, Monday, February 16th.  I finally had talked myself into accepting the inevitable.  I got in the shower and started shampooing.  My hair literally came out in clumps. It really was disgusting.  I would run my hand over my head, and I would have a handful of hair. I finished my shower, cleaned out a large wad of hair, then looked at myself in the mirror. Jack Nicholson was looking back at me.  My hairline had suddenly receded by at least an inch. The hair that was still there was very thin and the only thing I could do was comb it straight back Everytime I did that, there was another wad of hair in my comb. So, here I am, bald and frustrated.  Hats and headcovers are my future, at least through the summer.  Thank goodness I had already bought a wig and some hats.  Now, to paraphrase Jack Nicholson  in the movie 'The Shining', "Here's Connie!"     

The Chemotherapy Treatments Begin

I haven't posted anything on my blog for almost a week.  I need to get up to date, but before I do, I need to say something about my wonderful neighbors, and church members.  I think of myself as being pretty independent and self-reliant.  I can handle practically anything that comes along. Right?!  Well, then something like this happens, and I found out how much others help means.  On my birthday, after being gone all day, I opened my front door to let our cat in, and found it filled with birthday gifts and good wishes from my loving neighbors.  I could hardly believe it.  There was homemade chicken noodle soup from the Crowthers, and Shepherd's pie from the Jarvises. There was a beautiful Azeala from the Marstons, and a flowering planter from my brother.  Then I picked up the phone to see if we had any messages and there were a dozen messages from people in my neighborhood and church wishing me a happy birthday and hoping I'm doing well.  I have people checking in on me and calling me to tell me they're bringing over dinner, so don't fix anything.  I almost feel guilty, but I want everyone of them to know how very much this all means to me.  We don't live on an island, and when we can accept love and help from others, we enrich everybody's life.  Thank you!

Now on to my chemo experience.  My first treatment was on January 27th.  It was a long day.  I

started out by having a MUGAScan.  A MUGAscan, you ask?  I thought the same thing when they told me I needed one.  What the heck is a MUGAScan.  Well, it's probably one of the easiest tests I've had.  It's to test the heart's function, to make sure it's working okay, since I guess chemo can be hard on it.  Anyway, they put in an IV (another d-- IV) with some kind of isotops, then they watch it go through the artery system.  I just had to lie there, and I even fell asleep a couple of times.  That lasted almost an hour and a half.  Then I had an appointment with the surgeon, who decided to take the drain out that still was in after over a month.  The dumb thing just wouldn't quit draining.  Of course I was scared to death of that.  I kept saying, "but I haven't psyched myself up for this."  They did it anyway, and I didn't feel a thing.  I'm such a chicken.  I also got another shot of saline in my expander while there, then it was on to the 

Oncologist.  

I was as nervous as a tick, and they knew it.  My heart rate was above a hundred and my blood pressure was on the high side.  Dr. Ward told me he'd think there was something wrong if I wasn't nervous.  They talked me through the procedure and calmed me down somewhat, then sent the orders to the Infusion Room.  Pat and I walked the long walk there, and I checked in. They told me it would be awhile, so if we wanted to get some lunch we could.  It was about 1pm then and my appointment for the infusion was 1:30pm.  We ate lunch at the Point, a very nice restaurant on the top floor of the Huntsman that is surrounded by windows and has a beautiful view of the Salt Lake valley.  We then returned to the Infusion area and waited, and waited. Finally, at nearly 3pm, they called me in.  I found out the holdup had been that they were waiting for the MUGAScan results.  Once they got those, they could proceed.  That's one thing I really appreciate about being at the Huntsman.  Everyone is on the same page and they make sure things are done right, and I just have to be there.  

The Infusion Room is pretty intimidating.  It's a very long room with a long nurses station in the middle.  There are recliner chairs placed around the room (probably eighteen to twenty), and each of these has a chair next to it for someone to sit with you.  My Paddy, of course, is my someone.  There is  a portable IV station at each chair and there is even an individual TV on a retractable arm for each chair.  I was given a recliner to sit in, and immediately noticed that every chair was filled.  That was pretty humbling.  I'm definitely not alone in this battle. 

The nurse I was assigned to came over and talked to me for awhile and let me know how everything was going to go.   I had a Power Port placed in my chest the Friday before all of this began.  This was done so  I wouldn't have to have any more IV's done in my arm. This is another thing I learned after having my mastectomy.  I can't have any blood pressures or IV's done on my right arm anymore, because it can cause lymphedema.  That limits everything to my left arm, and like my daughter, Amy, told me, the veins in cancer patients get to the point after awhile where they're like strings, and they're hard and extremly difficult to access.  The thought of being poked and proded for four months was enough to make me have no second thoughts about having a port.  Anyway, back to the chemo treatment.  It took two nurses and three tries to access the port, because it was still swollen and tender from the surgery.  Not Fun!!  But, once it was accessed, everything went like clock work.  I read, listened to my IPod, took a nap, and before I knew it, the treatment was over and we were on our way home.  It took nearly three hours, but I got through it, and didn't feel much worse for the wear.

The first thing I did when I got home, was take one of the anti-nausea pills they had perscribed. I wanted to do everything I could to prevent nausea.  One of my visiting-teachers from church, Ardeth Kapp, brought us dinner, and I even felt like eating it.  I went to bed and had no problems.  I kept up with the anti-nausea pills for the next four days, and didn't have any trouble with it at all.  Thank goodness.  My daughter, Amy, the nurse, gave me a Neulasta shot the day after the chemo.  This is supposed to help boost my white blood count, so it won't drop so far with the chemo, then I can have the chemo every two weeks instead of every three, thus shortening the amount of time spent on it.  The side effect, bone aches and pains.  These didn't show up till the next day when I was in the shower.  I was washing my hair and suddenly, my arms felt like lead weights and I could hardly move.  I had to sit down for a few minutes just to finish and get out.  Wow!  The only other problem I had during the time following my first treatment was a rapid heart beat with a cough.  This scared me, because I thought it was my heart, itself, but after another visit to the doctor and several tests, it was determined I was having an asthma reaction to the gunky inversion we were having in our area.  They put me on Advair, and it seems to have corrected it.  There's just way too much to think about.  I think I'll go read my book and zone out.   

A New Year and A new Life

The week following Christmas was a time of R&R (rest and relaxation).  A dear friend, Larry Tobin, sent me a card that said it best:  "When you're not feeling well, your life stops.  There's no juggling work and home.  You don't take any phone calls and answer a million e-mails, you don't cook, clean house, or do any grocery shopping.  MILK IT FOR ALL IT'S WORTH."  (and I did).

I saw the plastic surgeon, Dr. Agarwal, on December 30th, and he did pull one of the drains that was sticking out of me.  That was nice, but I still had one in.  That's okay, I'd much rather have a drain sticking out of me than be filled with fluid or infection.

New Year's Eve was a very quiet affair, needless to say.  We did buy some king crab legs, potato salad and coleslaw for our traditional dinner.  My daughter, Amy, joined us with her baby daughter, Callie to see in the New Year.  Her husband, Aaron, was out of town on business.   We watched 'Mama Mia', which was a fun chick flick (Pat loved it).  Then watched the ball drop in Times Square and were in bed by 1am.

The beginning of the new year was pretty quiet.  We celebrated our son Mark's 25th birthday on January 3rd.  We took him to see 'Yes Man' with Jim Carey (I about lost it a couple of times), and we had sushi together, before he was off to celebrate with his friends.  We took our adult family to dinner for our son-in-law Aaron's birthday (Dec. 26th) and Mark's (again), and Pat and I enjoyed the Utah Symphony performing Mozart's Piano Cocerto. I don't believe in sitting home and pining away.  

Then the rounds of appointments in preparation for the chemotherapy treatments began.  I saw a Rehab Therapist to show me massage techniques to help prevent lymph-edema in my right arm.  I was so happy to learn these, because I have a step-grandmother that had had a mastectomy back in the 1960's who suffered from lymph-edema, and it was an ugly condition. Her arm would swell up to twice it's normal size.  It would become inflammed and she would have fevers and chills, just like she had a case of the flu.  If there is anything I can do to avoid that, I will.    

 Another thing I learned from the Rehab Therapist was that if I travel by plane I need to wear a compression sleeve on my right arm to prevent it from swelling, etc., since the air pressure at 35 thousand feet is less than ground level (even with cabin pressurization).  For crying-out-loud, there's too much stuff that I took for granted for so long, that now I have to be aware of and take care of.  This really if going to be a new life. 

I decided that if I was going to be doing chemotherapy, I needed to have my teeth checked and cleaned before I started, so that was next.  I also knew that I would most likely lose my hair, so I went wig shopping.  I found a really cute wig that looked almost exactly like my own, so of course, I bought it along with some hats and caps to cover my eventual baldness when I didn't want to wear a wig.  

I had a CTScan of my chest and abdominal areas to make sure there was no cancer any place else.  This was done because they had found some cancer in two of  sentinel nodes at the time of my surgery.  They had taken out the other sentinel node and six of the axillary nodes, but no other cancer was found.  I don't know if any of you have had  a CTScan, but it's no big deal.  The worst part is drinking the half-gallon of contrast liquid before the test.  They try to give it a nice sounding name "Berry  Punch", but it still tastes lousy.  

I met with Dr. Agarwal's nurse, Vicki Rosser, a couple of times and began the expansion of the cadaver expander they put in at the time of my mastectomy.  That was another interesting experience.  This expander has a small metal disc on the top part of it that has a tiny hole in it (kind of like a tire where you pump air into it).  Vicki finds the hole with a magnet and marks it, then sticks a tiny needle in and pumps in a saline solution.  It doesn't hurt, but I do get some wierd sensations of hardness and fullness on that side.  They tell me that's normal, whatever normal is. 

After this busy week, Pat and I took our three grandsons to see 'Walking With Dinosaurs'.  This was a live presentation using life-size animatronic dinosaurs.  It was not only entertaining, but educational.  They had a running dialogue by an actor playing a paleontologist that explained the different periods of the dinosaurs and the types that existed during those periods.  It was fascinating and our grandsons were mesmerized.  It was definitely worth the time and money, and it was a nice break after a crazy week.      

Merry Christmas - 2008!!

Christmas morning turned out to be  beautiful.  The storm that had been predicted had not arrived, the sky was clear, and the snow that was on the ground, sparkled in the sunshine.  Our Christmas tradition is to have brunch and then open gifts, but since Colin stayed over, Santa had found him, and there was a load of gifts under the tree for him. He couldn't wait till Amy's family arrived, so we had the first of the great gift rushes in the morning.  I felt pretty good.  In fact, I was surprised I didn't have any more pain than I had. I sat in the living room and enjoyed watching Colin open one surprise after another.  It was the beginning of a merry Christmas!

Amy and her family arrived about noon for brunch and the second great gift rush.  We had a yummy brunch, all handled by our children.  I just sat and watched, which is pretty difficult for me to do.  Pat's nephew, David, and his wife, Janna, showed up to enjoy brunch with us and of course help open gifts.  We had a very nice afternoon together.  About the time that I thought I needed to lie down and have a break, my niece, Lisseth, and her family showed up.  So, another round of Christmas cheer.  

Christmas night came, and we were all about to sit down and play a game of Saturday Night Live Trivial Pursuit, when the snowstorm, that had been predicted, showed up.  When it arrived, it arrived with a slam.  Amy and her family barely made it home, before the roads were bad. Mark tried to get back to Salt Lake City, but wound up turning around and coming back to our house.  He wound up leaving his car about a block away, because he couldn't get up the hill. Erin, Colin, and their dog, Scout, stayed, too.  So we had another houseful.

It was a wonderful Christmas, and the best part was that my surgery was over, the tumor had been removed, I was home, and feeling pretty dog-gone good, considering everything.  Needless to say, I slept very well Christmas night.