Monday, November 30, 2009

Radiation

So here's the short of it,
My radiation treatments started today. 

And here's the long

Today I started my radiation treatments. I had to go up to the lab at Dr. Schlabach's office to get my blood counts first.  They are low, but both my doctors felt like they were showing a move in the right direction and both were of the opinion that radiation could begin.  Both of these doctors are very cautious practitioners, and I feel very comfortable with their decision.

Today was a long appointment.  They kept referring to it as set up and blocking, and referred to the shields.  Once again, I had to have my arms above my head holding onto those handles.  It really stretches my shoulder muscles, and after a bit of time is quite uncomfortable.  I was in two different rooms this trip, and both the rooms were very cool. Apparently they have to keep them pretty cool because of the machines.  It wasn't too bad when I was fully clothed with my big sweater on. Once my nurse said take everything off from the waist up and put on this robe, open in the front, I was cold!  In the first room my radiation nurse, Johnna, got me in just the right position and took x-rays.  It took lots of time - she was extremely meticulous about getting my body in exactly the right position.  She had me lie down on the skinny bed and put me into the upper body mold that they made on my first visit; then she moved me - it seemed like only in the tiniest of increments.  Sometimes she would just push against my skin to move me and get my tattoos right under the beam of light shining on my chest. Other times she moved me using the sheet.  Sometimes she rolled me just a bit, other times she actually pulled the sheet under me from one side or the other. None of the moves seemed more than just the tiniest bit. Then I had to be really still for a long time while she took measurements and marked me up with a permanent marker - oh yeah, my arms were still up over my head.  She would say numbers like 94 point 2 or 82.  I have no idea what those numbers meant.  I must have incredibly stiff muscles in my shoulders, because it really hurt to have to be so still with my arms up.  I kept just telling myself that I only had to get through another 5 minutes, finally toward the end, I was aiming to get through just the next one minute at a time.  After all the x-rays were taken Dr. Gefter came in and checked out the positioning and marked up a big area on my chest.  Then I was able to put my arms down and they took me to a little dressing room to wait for the OK to go into the treatment area.

I probably waited 20 minutes or so in this little dressing room for the treatment plan to be approved.  When I went into the actual treatment room, they replicated the first day I went for planning and mapping.  I had a special cushion under my knees and a pad under my back at a very specific location.  My upper body mold went on the table and I got right into the position. My treatment technician was a delightful young woman not too much older than Liga.  She told me what to expect and exactly how it would all happen.  She was joined by another technician and we repeated the meticulous positioning - I think it was easier because there were two of them.  Again, I don't think they moved me very much at all any time - and sometimes it seemed they were just pushing my skin. but they finally got me lined up just right.  Then Dr. Gefter came and double checked the x-rays and the positioning and marked me up some more.  I do think that the smell of a permanent marker will remind me for a long time of radiation treatments.  So here we were, ready to go.  The machine moved to the right side - the technicians left the room and it radiated me for 30 - 45 seconds.  Then the machine moved to the left side and I got the second short blast of radiation.  Then it was all over!

So it seems that the majority of a radiation appointment will be getting into the right position and making sure that the marks for the margins of the treatment area are touched up.  No wonder Johnna told me to buy a couple of really cheap bras.  I'll have permanent ink marks all over whatever I wear for the next couple of months!  I go again tomorrow and again the next day - 36 treatments Monday through Friday with time off on Christmas Day and New Year's Day!

My Mom, Aunt Frances, and Aunt Joyce gave me a special gift for this radiation phase of my treatment.


There is this beautiful gold foil box and inside it are 36 quotes for my days of radiation treatment.  There is a poem written by the sisters.







                           FOR LYNN - BLESSINGS
       Inside this box are quotes for you.
       Choose one each day to see you through.

       Some are deep and some are fun
       But remember, dear, to choose just one!

       We hope they'll help you pass each day,
       And just remember, we all will pray...

       That you will find, before much longer
       You will become stronger, STRONGER!

       And, yes, we add a final touch...
       It is "WE LOVE YOU VERY MUCH"!

          Emily (Mom), Frances and Joyce

Sunday, November 29, 2009

The Christmas Star

So here's the short of it,
The Christmas Star that Dad helped conceive and build is lit in front of First Cumberland Church. 

And here's the long

I was a little more tired today -- maybe I overdid it the last couple of days when I felt so much better.  But all in all today was a pretty good day.  This morning I slept in a bit and this afternoon I took a pretty long nap. I had enough energy to putter around the house a bit, but didn't really get very much accomplished. 

This evening, Alan and I went to the church service at First Cumberland Church for the Star Lighting service.  After Dad and Mom got settled in and decided which church they would attend, it didn't take long for him to start talking up the idea of a Christmas Star every year.  So the Star in front of First Cumberland is just one of the tangible legacies Dad left behind.  He loved the stars.  In the last weeks he was alive, Alan and I went to visit and told him there was a really bright star that evening.  He mouthed, it's Mercury.  He knew the heavens just as well as I know the streets running through the Belvoir neighborhood.  And he was enthralled with the idea of the star at Christmas.

Tomorrow I have my first radiation appointment.  I'm not sure if they will actually do the treatment since my platelet counts were still so low last Wednesday.  I'll just have to wait and see what happens.  I understand the first treatment takes about an hour to make sure everything is set just right.  I still have the ghosts of the permanent marker from my mapping.  I do know I'm not allowed to wear any deodorant over the length of the treatment.  I'm to use cornstarch instead.  The nurse also told me to get a couple of cheap sports bras to wear during the treatment.  She told me that whatever bras I wear will be ruined by the treatment.  I'm not sure why, but I'm sure I'll find out! 

My fingers are pretty sore.  One of my friends who is probably also distant family sent me a suggestion to use Zim's Crack Cream.  Liga picked it up for me today when she did our grocery shopping, and I've been using it since.  I sure hope it helps.  My Aunt Frances also sent information about a foot cream for neuropathy.  I'll get that ordered tomorrow!

Saturday, November 28, 2009

Good family time

So here's the short of it,
I'm feeling stronger and had a good visit with Shelley, Lou, and Max.  

And here's the long

Today I continue to be stronger.  But now at 8:30 in the evening, I'm really tired.

This evening we had Mommy Anne, Shelley, Lou, and Max for dinner.  Liga also invited her friend Danny.   I felt well enough to really help in preparing dinner this evening.  That's a major step forward.  Sophie got along great with Max tonight. Actually for the first part of the evening she was quite shy and not sure what to make of this baby in her house.  By the end of the evening she was giving Max some little doggie kisses on his hand. They will be headed back home tomorrow early morning.  We'll miss them!

My physical symptoms are certainly bearable, but they are sure no fun.  I continue to have neuropathy in my feet and hands.  In addition to the numbness and occasional tingling I'm beginning to have occasional shooting pains in my feet - I have nothing at all like that in my fingers.  My fingers are mostly just numb, and make handling small things really difficutl.  The fingers on my right hand are cracking open in small sore places on the tips - following the ridges of my fingerprint, as well as in a couple of places at the corners of my nails.  For the first time in a long time, I'm having some back pain.  It's been so long since I really did any of my stretches and I've sure gotten pretty stiff - I imagine that's the biggest part of my back pain.  As I get stronger, I'm going to really make that a priority.

Tomorrow night at First Cumberland Presbyterian Church, there will be a ceremonial lighting of the Star.  Gene brought that idea of the star with him from Kentucky when they moved to Chattanooga.  He and a gentleman that he met at church, made the star and for several years now it's been on the front lawn of the church each Christmas season.  Alan and I are planning to go to the service. 

Friday, November 27, 2009

Stronger

So here's the short of it,
I'm feeling better and trying another neuropathy treatment.

And here's the long

I've felt stronger today!  That must be good news about my blood counts. 

It's been months since I've had enough energy to make a dent in the mess on the kitchen counter.  Everything that I put there has just stayed there.  Along with just a few things that other people put down.  Sophie's adventure with my medicine box yesterday was my incentive, so today I cleaned up the counter.  I didn't get out of breath from the exertion, and I didn't have to keep sitting down. It's not quite finished, but I think Sophie has been very disappointed the last couple of times she's tried to see if there's something interesting.  She apparently suffered no ill effects from the medicines and the glass shards.  She's going to be very disappointed tomorrow when she can't have all the whole wheat bread she wants. 

I read a post today from someone who wrote that foot baths and massage really helped her neuropathy.  So as I sit here, I've got my feet soaking and am going to give myself a foot massage before I go to bed tonight. I'm still taking the B6, I also read that I should be taking B12 - I'll get that on the grocery list too.  My right foot and hand seem to be worse than my left.  I could imagine it's because my port is on my right side, but I know better, because the end of the port is somewhere in the middle of my chest.  So I don't really know why that should be.  Today my middle finger on my right hand is really tender on the nail and all around the edges of the nail.  I know lots of people lose their nails during chemo......I'm thinking that's not what's happening after all my chemo is over! 

This evening Alan and I had dinner with Joyce and cousin Daniel, and then went over to visit with Max for a few minutes before he went down for the night. 

Thursday, November 26, 2009

Thanksgiving and Sophie May Not

So here's the short of it,
Thanksgiving was very different this year, and Sophie May Not was a very bad girl. 

And here's the long

Today has been an adventure.  It been a very different Thanksgiving.  I've also had much more energy than I thought I would have. 


Late this morning, we went to Cracker Barrel.  I met Aunt Joyce and Cousin Daniel there as they were on their way through town going to David and Cyndi's for Thanksgiving Dinner.  We visited for about 30 minutes and then the rest of the crew arrived - Mommy Anne; Shelley,Lou, and Max; Liga and Valdis; and Alan and me.  I've never done Cracker Barrel for Thanksgiving before, and there were sure a lot of people "doing Thanksgiving" there.  We had a lovely time and it was nice for us to all be together for a while. 

We had several cars there and Liga left early so that she could get ready to go to work.  I was taking my time moseying home the long way when I got the call. When Liga arrived, there all over the living room was the evidence.  Sophie May Not had gotten one of my weekly pill boxes and a compact florescent light bulb still in its package.  She had chewed open the pill box and the florescent light bulb package was open and it was shattered all over the floor.  By the time I got home, Liga had the mess cleaned up, and had saved the pills in the dustpan.  I was able to count how many were missing of each one. There was no way to really tell if she had swallowed any of the glass from the light bulb! Once I had everything accounted for, I called the Emergency Vet Clinic and they referred me to the ASPCA poison control center.  You can bet I was pretty nervous about that call!  I was mostly worried about the glass and the Elavil - that's a medicine they have put me on for my neuropathy.  (That will be another blog entry altogether about using anti-depression medications for neuropathy).  After a tense wait the vet on the other end of the call told me that she probably had not ingested enough to harm her.  He was not particularly worried about her ingesting the glass.  He told me to bulk up her diet today and tomorrow with whole grain bread.  That apparently will bind up any glass she might have gotten and help her pass it normally in her stool.  Then he gave me the symptoms to watch for that would be reason to take her in to the Emergency Clinic.  Thankfully, she has not exhibited any of them all day.  What an afternoon! Our last dog wasn't  big enough to counter surf --- and the counter is so messy these days partly because I've not felt like doing anything at all for months! Anyway, I spent a couple of hours today working on the counter.  I still have a section to tackle tomorrow.  Sophie has been amazed today - every time she came near me I was offering her a piece of bread!  Right now she is snoozing away just across the room from me and seems to be doing just fine and dandy.  

Late this afternoon Cousin Mia came by on her way home from taking Clyde to the Atlanta airport for a quick Thanksgiving trip to see his Dad.  We had some great girl time making fried green tomato and turkey bacon sandwiches for supper and just chattering all about the kids, work, and stuff. 

It's not really late, but I'm beginning to get a little tired.  I think it's good that today wasn't a Thanksgiving like ones we've had over the years.  It's been hard to get through this first Thanksgiving without Dad, but it was easier that we were doing things differently than in the past.  Sometime during Thanksgiving Day Dad would always ask everyone say something they were thankful for.  I'm very grateful that Gene Howard was my Dad.  I am also very grateful that Mom is still here with us.

Wednesday, November 25, 2009

So here's the short of it,
I had a relaxing morning  and a treatment this afternoon.  
Neuropathy and no hair continue.  

And here's the long

Today we had a lovely brunch at cousin Mia's with Shelley and Lou and Max.  It was a nice relaxing time.  Mia made three different kinds of quiche.  Everyone was raving over the spinach and mushroom one, but the way my taster is these days, my favorite one was made with ricotta and goat cheese with red peppers and tomatoes.  It was really nice.  

This afternoon I had a Herceptin treatment.  My red counts are very slowly creeping upwards.  I had another shot of Procrit, but right now no transfusion. Thanks to everyone who sent up prayers, meditated, crossed fingers or other methods of support!  I wonder what will happen with my radiation on Monday.  Dr. Gefter has told me that he won't start radiation until my counts are up a bit.  I'll just have to wait - so I'll thnk about that on Monday.


My neuropathy is still about the same.  Not being able to be sure of my feet causes me to walk slowly and to sometimes lose my balance.  I haven't fallen yet but I have to be pretty careful.  My right foot continues to be much worse than my left.  I've discovered that having my feet cold makes the neuropathy more pronounced. Mom got me these great socks to wear around the house at night.  I actually go to bed with them on my feet and a toboggan on my head.  Sometime in the middle of the night they come off.  Keeping my feet and head warm makes me much more comfortable.

I'm thinking I'm at the turning point now.  The other day Liga was in the car with me and the sunlight was hitting me just a certain way and she gasped and said, "Mom, what happened to your eyebrows!"  Well, they aren't completely gone, but they are sure barely there - and the same is true of my eyelashes.  So I'm thinking as far out as I am from my last chemo, it may be about time for hair to quit falling out, blood counts to quit dropping, and more energy to return.  I'm also really eager for my taste to return! 

Tuesday, November 24, 2009

Thanksgiving Break!

So here's the short of it,
Thanksgiving break is here, and Max and his Mommy and Daddy are in town.


And here's the long

Today was the last day of work before the  Thanksgiving Break.  I actually had a really good day and was back in a school building again!  I really like beginning to do some of my more normal activities.

My neuropathy seems to be about the same.  When I'm working at my desk I can turn on the little heater that Russ brought me and it seems to help my feet some.  And of course, when I fall asleep it doesn't bother me at all! My fingers don't really bother me - it's just that I don't have any dexterity.  


This evening Shelley, Lou, and Max got here after a flight delay at their layover, but we went over for a brief visit before Max went off to sleep.  I'll swear, when they were handing out handsome, that little boy got in the line twice!  He is really beautiful. 

Tomorrow morning we are going to spend some time with Mia, Dad's first cousin.  And I have a Herceptin treatment in the early afternoon.  I will also get a blood count report.  Last week Dr. Schlabach came in to visit with me and let me know that if my blood counts don't come up I'll need to have a transfusion.  So here's a request for lots of prayers and good thoughts that my blood counts will be up tomorrow.

I'm so glad to have some time off! Tomorrow will be a sleep in day.  I know, I know, I can just hear some of you saying that won't help me get my days and nights straightened out.  I do need to do that, but I'll work on that later!

Monday, November 23, 2009

So here's the short of it,
A good punch recipe, and a sore thumb report.


And here's the long

Yesterday at the reception for Dr. Carver, they were serving a punch that is one of the few things that's really tasted good to me in months.  I asked for the recipe and so I thought I'd share it.  Maybe it will be good to people with regular taste as well.

1 part ginger ale
1 part 7-Up
1 part white grape peach juice

Well, that's it!  I decided to buy the ginger ale and 7-Up in small bottles instead of the 2 liter ones  so I could just make a little at a time.  Sometimes something that tastes good stops tasting good, so I'm hoping this one will taste good for awhile.

I had a pretty good day at work.  I had a meeting in a school for the first time in a long time.  It felt good to be out in my "old world".  I'm still awfully tired all the time - it's especially noticeable when I do any level of exertion like walking up steps.  I have started trying to walk around the circle (at a slow speed) a couple of times.  I get Sophie out so she gets a chance to run around and it makes her a little calmer and I'm guessing it must be helping me a little too. 

My neuropathy is about the same.  A new development is a cut on the end of my thumb.  I didn't really know I had it until Saturday night when we went out to eat.  When I squeezed the lemon into my water, I felt my thumb just sting like all get out!  I looked and there was a cut right on the end of it that I hadn't even felt because of the neuropathy.  Last night it was sore and throbbing so much I had to take some ibuprofen to get to sleep, and this morning it was all swollen.  I called my onc nurse and she had me take a picture of it and e-mail it to her!  I thought that was so great.  I didn't hear from her so I guess it will be fine with anti-biotic ointment and a band-aid and ibuprofen for the pain until I go in on Wednesday for my treatment. 

I have one more day of work, then I'm off for the Thanksgiving Holiday break until the next Monday; I'm looking forward to some Turkey!

Sunday, November 22, 2009

So here's the short of it, 
 "To her the name of father was another name for love."
~~By Fanny Fern.~~


And here's the long

Today Alan and I went to First Cumberland Presbyterian to be with Mom for the installation of Dr. Carver as their minister.  He came to the church as an interim minister to serve until they found another minister after Reverend Schenk left.  He had not been there long before Dad's surgery.  He was such a source of strength for Mom and Dad during those long weeks at Erlanger and then at Kindred.  He rarely missed a day of visiting with Dad.  He always shared a scripture and prayer with him.  I know that meant so much to Dad who had as a part of his morning routine always to read his Bible and pray for the list of people he kept updated on his latest legal pad. He was also at the house in the middle of the night after Dad died and conducted a funeral service that was wonderfully comforting to the family.

When Alan and I got there we sat in the seats we thought were those that Mom and Dad usually occupied.  Apparently we were wrong!  We ended up seated much further up front than Mom and Aunt Joyce!  The service was lovely.  The first hymn was "We Gather Together", and as the choir and congregation started singing I could almost hear Dad's voice ringing down through the years singing that song at this time of year in the various churches we attended as we were growing up. I have cried off an on most of the rest of the day as images and memories of Dad crowd my mind.  At one point Alan walked out of the church and I followed him - he was wiping his eyes.  He told me that yesterday, he thought he'd be able to clean up the garden that Dad helped us with every year since we've been in this house, with the exception of this year.  He said he got about half way through and just sat down and cried.  Most of the time I'm doing just fine and moving along and working and doing the things I do in my normal life, and then sometimes most unexpectedly something will happen and I am plunged deeply into my grief. 

Saturday, November 21, 2009

Going out

So here's the short of it,
I had a partially successful trip out.  

And here's the long

Well today I thought I was feeling strong enough to go over to the mall and get some underwear.  It just seems like the right time! So I thought, I'll go to JC Penney's and just do this one thing and then come right home. It was the first time I've been out except to work or on an occasion or two out to dinner. Anyway perhaps it's fitting - but as I was downstairs shopping - I had a sudden  diarrhea urge.  As I said, I was downstairs and the restrooms are upstairs and over in a corner. I walked very quickly even up the escalator - well as quickly as I can with this neuropathy in my feet - and managed to get there just in time.  Thank goodness there wasn't a line! Someday this story is going to be funny I'm sure, but right now I hate how this diarrhea dominates my existence.  It's not like before - I don't always have diarrhea, and I am not going every few minutes, but just out of the blue this will happen.  It's not been a problem at work because there aren't many people in the building and the restroom is right around the corner.  I'm eager to get back to my regular routine at work, but I'm wondering how that will all work. 

I came right home after that one errand, and I was just exhausted.  So I sacked out on the sofa for awhile this afternoon.  Since Sophie's gotten her stitches out, we went out for a bit later this afternoon.  She loved being outside.  Charlie and Cutie Pie were both out to play with her for a bit. I managed to walk around the circle 3 times while she was playing - well I guess it would be more appropriate to say I limped around the circle.  In spite of my absolute weariness, I do think I noticed a bit more strength today.

This evening Alan, Mom, and I went out for dinner to the City Cafe.  We ended up sitting near the door and I got a bit of a chill.  As soon as I got home I got all wrapped up and by now I've gotten a little warmer.  My feet are about the same in terms of feeling, but I am beginning to have some shooting pain from time to time.  The pains aren't the disabling part though, it's the lack of feeling.  Well, I keep hearing that lots of people get better even up to 18 months after they've completed chemo.  I'm focusing on that!

Friday, November 20, 2009

More about Sophie and Lola

So here's the short of it,
I am so tired - I feel so lucky to have Sophie girl and her kitty sister Lola. 

And here's the long

Today was another pretty long day at work.  I think maybe I'm not quite as tired today as I have been.  But that's relative - I'm still awfully tired.  I'm going to sleep forever tomorrow.  I know that really messes with getting my days and nights straightened out, but getting up in the mornings has always been hard for me - now it's just such a struggle. So tomorrow will be a gift.  At some point in the morning, Sophie will try to pull me out of bed to feed her some breakfast and I'll just get up.  But it won't be getting up in time to get to work. So that's such a good feeling.

Sophie got her stitches out from her spaying tonight.  Dr. Carter is our neighbor, so he and his wife came over and took the stitches out.  I am so looking forward to getting her out tomorrow and just letting her run all over the circle...here's hoping Charlie or Cutie Pie or Abbie (her best dog friends) are out for her to romp with. It has been so hard to try to keep her from exerting herself too much.  She was ready to run and romp the day after her surgery! Dr. Carter also gave us a couple of pointers on her mouthing behavior - so we'll work on getting those implemented.  She stole some more brownies tonight!  Liga made some to take to work since this is the last day of work for one of her co-workers.  She had the pan up on top of the coffee maker, and somehow Sophie got it down and helped herself to some of them.  Dr. Carter eased our minds since they were made with milk chocolate, he said she would probably be fine. Apparently the darker the chocolate the more dangerous it is for dogs.  We are just not used to having a dog who is big enough to really counter surf!  We are all going to have to change our ways! These incidents are when Alan says her name is not Sophie May, it's Sophie May Not.

Lola is really beginning to get used to having this big dog around.  She does not let Sophie intimidate her at all. As a matter of fact, I've seen her actually tease Sophie from time to time.  She is very careful though not to let Sophie get her cornered.  Sometimes she will jump up on the back of the recliner and get under the afghan.  From that vantage point she can see out to see what Sophie's doing and she thinks she's hidden!  She's such a sweet kitty.  The two of them really lift my spirits. 

Thursday, November 19, 2009

Tiredness and Sadness

So here's the short of it,
I'm still tired. And this evening I bumped into my sadness about Dad.

And here's the long

Tonight when I logged on I didn't see yesterday's post. That's pretty weird.  Just a little investigation and I found the answer.  I was pretty tired and writing the blog was the last thing I did last night before I went to bed.  I guess I had getting in the bed on my high priority list!  After I got it written and previewed to make sure it looked like I wanted it to, I forgot to hit the publish post button.

Today my tiredness has just continued.  I worked and today the office was so quiet that there was one time when I thought I was just going to nod off right at my computer.  Fortunately there was so much to get done that a quick walk part way down the hall and back was enough to get me back awake.

This evening after work, I made a trip over to Green Life . I found the B-6 which I'm going to start taking for my neuropathy, and I picked up a couple of other things as well.  On the way out I ran into a friend, and we stood and talked there in the parking lot for a long time. Her mother has recently passed away and we stood there in the parking lot talking about our parents and just crying.  I realized that my sadness is still so close to the surface, and being with Amy just pricked at it.  I do think it was healthy.  I know with other losses in my life I've discovered that at the most unexpected times something will remind me and the sadness catches at my throat - and it seems that it doesn't matter how far in the past.  I miss Dad so much - I can't even imagine how Mom is dealing with this.

Tired, Tired, Tired

So here's the short of it,
I'm really tired.


And here's the long

I am so tired, and I am so tired of being tired!
Today I worked most of the day, but had to leave early to get to my Herceptin treatment.  I have to say that it is an absolute effort to get up in the morning and get dressed and ready to go to work.  I sleep but it doesn't seem that sleep touches this tiredness.  Even when I'm at work, and just sitting and doing work by computer, and phone, I'm exhausted.

This afternoon the reason for my exhaustion was made perfectly clear, it showed up right on my lab report.  My white counts are going up just a tad but are still not in a really good place, so I have to continue to watch my exposure to germs.  But my red counts aren't budging!  Dr. Schlabach came by and had a discussion about my red counts and the need for another blood transfusion. He is a super cautious practitioner (one of the reasons I wanted to use him) and he doesn't really like to do transfusions unless they are really necessary because of the risks.  When I had the transfusion before, he knew that I couldn't just stay home in bed, because it was the day before Dad's funeral.  He was afraid I would "pass out" with all the activity and people coming and going.  But since I have some flexibility with my schedule now and have a few days off next week, he suggested we wait to see if my body will rebound on its own and start making some red blood cells, which is his preference.  I suppose if my counts are still down next week, we'll have to schedule a transfusion.  So all prayers, meditations, and cheerleading for my bone marrow to get back to work to manufacture platelets and red blood cells will be greatly appreciated!

In the meantime, I am already thinking about next week when I'll have a few days to just rest and sleep with no alarm going off.  I wonder how late I'll sleep when there's nothing (but a dog) to wake me up.

Tuesday, November 17, 2009

Mapped and Tattooed - Brother Steve is Sick

So here's the short of it,
I'm mapped and tattooed for my radiation treatments, and my baby brother, Steve, is sick.  

And here's the long

I had my appointment this afternoon to get mapped for radiation.  The purpose of this appointment was to determine just where the radiation beam should be pointed and to have me in a position that I can replicate every time I visit.  It was a long appointment!  So here's how it went.  My nurse this afternoon was Johnna - only the second Johnna I've ever known.  She was very meticulous and talkative.  Of course the first thing was to get clothes off from the waist up and a hospital gown on - opening in the front.  If I ever had any modesty I can assure you that the minute I walk into a doctor's office it disappears.  Next step was to get on one of those narrow tables that slides into a CT machine.  I presume it's also the radiation machine they'll use for my treatment, although I didn't ask that question.  Johnna spent quite a bit of time getting me on the table in just the right position including getting my head tilted just exactly the right way.  The next step was for me to put my arms up above my head and grab onto these handles.   Then she actually made a form of my upper body - every time I get a treatment, I'll get into that form and it will help my body be in the same position as it was today when they made the map.  After the body mold, I started to have a cramp in my back - of course, my arms were still above my head and it had probably been 30 minutes. The solution for that was to put extra supports under my knees, and a support under my back.  That helped enough.  It's not a pleasant position, but it was tolerable, and when the treatments actually start, I'll only have to be in the position for a short amount of time.

So after the body mold was made it was time for the doctor to come do the mark up.  Since my head was tilted up and to the right and the cancer site is the left breast, I couldn't see a thing that was going on.  But Dr. Gefter began palpitating the surgical site and the margins of my breasts, where the chest starts.  I could tell he was putting dots all along the area where he was palitating.  In the meantime, I'm stretched out on the table with my arms up over my head, holding onto these handles, not comfortable.  As soon as he was finished, Johnna used this plastic tubing which will show up on a CT scan and taped it all along the dotted area.  This allows all the margins that the doctor marked to show up on the scan.  (and I still had my arms up over my head!).  Next, the table slid up into the scanner and I had to stay very still (with my arms up over my head), and I got scanned.  I didn't add up all the time, but it seemed forever with my arms up over my head.  I can tell I need to get back into some of my stretches as soon as I have enough energy.

After the scan, Johnna removed all the tape and allowed me to put my arms down while she went and planned the treatment.  I don't really know what that means, I guess that's why she went to school to be a radiation nurse.  While she did that work and I got to have my arms down, I drifted off to sleep.  I must have been so tired to go to sleep on that little narrow table in that cold room with just a sheet covering me up.  Next, Dr. Gefter came back, and I got back into arms over the head position fitted exactly into my upper body mold.  He apparently had checked the plan and came in to put more marks, especially along the center of my chest.  After he agreed that the plan was right he left, and I got one more chance to put my arms down and  rest - I think I drifted off to sleep again.

Johnna came back with a tattoo apparatus.  I didn't really see it, because I had to be in my arms up head to the right and tilted up.  She used some solution to remove some of the previous marks, but put several other marks on my chest and at the margins - she also put 5 or 6 very small tattoos on me.  There are three running down the middle of my chest and two on the outside margin of my left breast and at least one on the outside margin of my right breast. They felt like a bee sting, and tonight, they actually do sting just a little.  I also have marks made with permanent black marker.  They look like a plus sign about an inch and a half big. They are at the tattoo sites, so I can't even see the tattoos yet.  She showed me one that accidently hit her finger when a patient jumped, and it will be a very small but permanent reminder of the treatment.   It's become somewhat of a statement for some women who have had a mastectomy to have tattoos. Johnna said they only do the little marks, I'll have to see a tatto artist if I want more!  My surgical procedure is called a partial mastectomy.  I still have a left breast, but I've been told that the radiation will make it smaller - we'll see.  After all the marks and tattoos, it was picture time.  She took several pictures of me.  They will help them make sure I am exactly in the same position every time I have a treatment.  She even took a picture of the support used under my back to help with the cramping.

Here's another oncology office where the people are just wonderful and caring.  I'll be going every day Monday through Friday for 36 treatments, with the exception of Christmas and New Year's Day.  I start the Monday after Thanksgiving.  So by the middle of January, I'll be done with the radiation part of all this.

I'm home now, and I'm pretty tired.  I spoke with Mom just a little while ago and she told me that Steve has been sick for a bit.  He's got a mild case of shingles, and last night ended up in the emergency room where he was diagnosed with pancreatitis. When he asked the doctor what caused that, he learned that alcoholics often develop it.  Well.....since there is no way that Steve has had enough alcohol in his life to cause a problem, there must be a different answer - maybe it's the medicine he's taking for shingles.You can find more details about him at Mom's blog.

Monday, November 16, 2009

Radiation thoughts, and improving left foot

So here's the short of it,
I'm working, anticipating radiation, and my left foot may be a little better.   

And here's the long

I worked a full day today and I am so tired of just going to the office and working.  But then, I'm also just still so tired.  I so look forward to being back out in schools.

Tomorrow afternoon I have an appointment with my radiologist, Dr. Gefter.  He's going to do the mapping to get ready for the radiation.  I have no idea what mapping involves, but a couple of my radiation sisters have said that it's time consuming and a couple who have actually used Dr. Gefter have said that he is very meticulous and really takes his time to set everything up exactly.   Anyway, tomorrow evening I'll report on exactly what he did. 

I read a blog from another cancer patient who was undergoing radiation therapy, and she reported that the fatigue was absolutely disabling for her.  On the other hand, many of my friends and colleagues who have had radiation therapy mostly report that they did fine with it.  I suppose it is all very individual, and I'm very hopeful that I will weather it just fine.  In the meantime, I'll still be getting my weekly herceptin and having my blood counts run every week.

My feet are still pretty numb.  Maybe, just maybe, the left foot is a bit better - the ball of that foot is a little more tingly, like your foot waking up from being asleep. It also seems that I'm able to move my toes around a little more easily.  Maybe that means that it's getting better.  My right foot is about the same, and my fingers also seem about the same.  I noticed yesterday that the tips of my fingers are wrinkled up kind of like the effect when your hands are in water too long - except not quite so much.  I wonder what that's about!

Sunday, November 15, 2009

So here's the short of it,
I've had a good weekend and look forward to the week to come.

And here's the long

Today has been a pretty busy day.  I got up fairly early because I will need to get up early tomorrow for work. And I did not let myself have a nap so maybe I'll be sleepy at a decent time tonight.  The tiredness and sleepiness don't seem to be related at all.  I had a late breakfast with a dear friend, and that started me off in a good way. I am eager to feel well enough to just have what used to be a normal running errands, grocery shopping, going out to eat, cleaning up the house weekend!

A day or two ago Sophie chewed on Alan's phone.  It was an AT&T   8525 - a horrible phone with horrible service.  We both got one thinking we were getting great phones.  Oh well they were NOT. Last April I accidently shut mine in the car door.   It was in a coat pocket -- anyway I graduated to an iPhone, which I have loved.  Today Alan traded his 8525 for an iPhone.  I hope he enjoys it even half as much as I  have mine! 
We also had a short visit with Mommy Anne this afternoon.  She had not gotten dressed and gone to lunch.  It seems that she did get dressed and go to dinner this evening.  She always says how much she enjoys living at Elmcroft.  She has certainly seemed much more alert and livelier and engaged since she moved.  She's planning on going to the Thanksgiving dinner at the federation on Tuesday  John will pick her and a couple of other ladies up and take them to the JCC where they will enjoy Turkey and all the fixins'. 

Today Mom brought me the two hanging baskets of pansies that she had made for me.  They have blue, purple, and yellow pansies and are really pretty.  When we get the topsy turvey's down I think that's where they are going to go.  When she got here only Liga was at home and she helped her get them watered and hung up.

I've noticed with the neuropathy in my feet that I have to lean on something to put on my pants.  Now that's annoying!  I want the feeling in my feet back and I want my balance back. Feet and hands are about the same.  No improvement not really much change since my last report - I'm still having shooting pains.  So far they are occuring only in the parts of my feet that are numb - and that's a much larger area on my right foot than on my left.  One of my chemo sisters described the feeling as having blocks of wood for feet.  That's a pretty accurate description I'd say!

Sophie had another chocolate incident.  Liga made chocolate chip cookies for a young man she is dating, and she took the pans out of the oven, put them on the stove top to cool and left the kitchen.  By the time she got back, Sophie had made short work of four cookies - chocolate chips and all.  We've never really had a dog big enough to counter surf like this before, so we are going to have to adjust our kitchen behavior!  You would never know from her antics that she's just a few days out from being spayed.  I can't wait until we get her stitches out and can take her out to let her play with her friends.  Dr. Carter did the surgery and said that he'd just bring the stitch cutting scissors home and take them out here instead of having us bring her all the way out to the clinic.  So we have until Friday to keep her entertained and as calm as we can manage.

Well right now, I'm sitting in the den.  Sophie had a wild puppy fit just a little while ago and was jumping all over the furniture and Liga and me.  Now I'm sitting here with Sophie pooped out and napping on the cool tile floor, Liga snoozing on the sofa with her NFL football game on and Alan already tucked in for the evening.  It's quiet and lovely.  It's nice to just pause at times like this and think about how grateful I am for all the good things in my life. 

Saturday, November 14, 2009

Sleep, Mom time, and neuropathy

So here's the short of it,
I slept in this morning, had some time with Mom this afternoon and evening, and my neuropathy is changing some.


And here's the long

I did try to sleep in today.  I let the alarm go off and instead of hitting the snooze button as I usually do, I turned it off and loved just going right back to sleep!  I had to get up about 3 or 4 times - Sophie didn't want to wait for her breakfast, she chased the cat once, and I had to make a bathroom trip - but I stayed sleeping off and on until about 11:30 this morning!  I wish I could say that it made me less tired, but I'm realizing that my tiredness really doesn't have to do with sleep, it's just my drug induced anemia.  Still and yet (as I've heard around here) I loved sleeping and waking and sleeping.

Sophie is acting as though she never had any surgery at all.  She has really got cabin fever and since we aren't supposed to let her be very active, she's driving us crazy!  Big puppy crazy!  Alan took her for a walk down to Mom's this morning to do an errand for Mom and he said on the way back as soon as they rounded the curve on the way back to the house, she took off running as fast as she could for the front door.  She was eager to get back home and annoy me.  Next Friday she can get her stitches out and we can resume letting her out to play with her neighborhood friends.  She is so much calmer when she gets an opportunity to go out and run like crazy for 30 or 40 minutes in the evening. 

This afternoon Mom and I drove Dad's truck and went down to The Barn Nursery.  Mom's making me a couple of hanging baskets and we got the stuff.  We found really pretty pansies, blue, dark purple, yellow and orange.  Mom's going to make them up for me.  She's got such a green thumb and I'm really going to enjoy having them. This evening Alan, Liga and I went down to eat with Mom.  She's working very hard to make sure that I am eating things that will bring up my red counts.  Actually I'm not really sure that what I eat will make much difference.  But tonight was soup beans (pintos), kale, roasted beets, and cornbread.  My taster still isn't back to normal, but I enjoyed the cornbread and the beets. 

I'm noticing some change in my neuropathy.  I don't have more feeling anywhere, but I am having pretty frequent shooting pains in my feet.  They are not horribly painful, but they are certainly noticeable.  My walking is pretty impacted.  I have to be pretty careful and I've slowed down considerably.  I noticed that walking up and down the steps at work is pretty much like trying to race up a mountain.  I have lost so much strength and endurance. 

Friday, November 13, 2009

No Internet, neuropathy, and a weekend!

Here's the short of it,
Our Internet is not working; my feet are feeling about the same; and I'm looking forward to the weekend.

And here's the long.

Tonight when I tried to log on to update the blog, the Internet in our house was not working! Shoot! SO I've got this cool iPhone and tonight I decided to try an app to see what I could do. We'll see how the post looks. I can't figure out how to do bold font or color - but this will do!

My feet are still about the same. The biggest difference tonight is that I'm starting to get these shooting pains in my feet. On that pain scale that doctors use, they are probably between a 2 and a 4. But I'm wondering what it means. Maybe it's a hopeful sign that the feeling is coming back. Really my feet and fingers and of course my tiredness are causing most of my difficulties these last few days.

Tomorrow morning I'm planning to let my alarm go off and I'm going to turn it off and just keep on sleeping! Then in the afternoon I may just take a nap! I know Dr. Schlabach has explained that my tiredness won't go away by sleeping - but I'm going to give it a try!

Thursday, November 12, 2009

Neuropathy report, and a bad, bad puppy

So here's the short of it,
I'm still so tired, my feet and hands are about the same, and our big puppy did a bad thing.  

And here's the long

I am still pretty tired.  Oh, I am so eager to have this weariness lift.  I just don't have much energy at all!  I worked today, but stayed right at the office except to run out to get a quick sandwich to bring back.  I'll have to say that I'm also very eager to feel like I can be in school buidlings and not worry about catching some awful bug.  

My feet are about the same, except I'm having a bit more of that sharp shooting pain this evening.  Today at the office I wore these beautiful smartwool socks that one of my chemo sisters sent to me.  They are a kind of Norwegian pattern and have stripes on them in one spot and, as she said, match the chemo lines on my fingernails!  Anyway between my smartwool socks and my little ceramic heater my feet felt much better today.  It's still hard to walk when I take the first few steps, but it gets a little easier.  I still feel off balance sometimes too.  Today my Uncle sent me a reminder about the old timey remedy of Vicks VaporRub on the feet.  I'm going to do that before I go to bed tonight and see if it makes a difference.  I guess it will be the weekend before I get the B6, but I'm going to start that right away too.  I'm NOT going to try the magnesium just yet... twice today I've unexpectedly had to  make a run to the bathroom so I don't want anything to make that worse!

I tried the MD Anderson mouthwash on those sore places on my fingers.  I can't tell yet if it's doing any good, I'll try it a couple more days and see if it helps. The one place on my index finger is pretty sore.  And when I'm using the keyboard, it's pretty noticable. The neuropathy in my fingers still makes me pretty clumsy. 

This evening when I got home I made a bad pup discovery.  Liga had made brownies the other day and put some away in a plastic container for a friend.  Valdis was annoying her and took one, and in the whole scene that followed, the container got put close to the front of the kitchen counter.  So sometime in the afternoon, Sophie did some counter surfing and ended up with the brownies.  She chewed through the plastic container - maybe ate some of it - and then ate the four brownies! Bad Sophie! As soon as I figured it out I called the vet.  We decided to just try to treat her at home since it sounded like a trip to have her treated at the vet might cost a couple of day's wages!  So I fed her two tablespoons of hydrogen peroxide to try and make her vomit.  It didn't work.  She was very hyperactive for a couple of hours.  Now she's more relaxed and is sleeping.  I hope she's OK!  I'll report on her tomorrow.

Wednesday, November 11, 2009

Blood counts low

So here's the short of it,
My red blood counts are so low!  

And here's the long

Well, it's no wonder I'm so tired I can hardly go!  My red blood counts are so low.  My platelets, red blood cells and hemoglobin are all way below the lower limits.  Thank goodness my white blood cells and my granulocytes have moved just into the lower limits for normal (barely there, but nonetheless, there).  They are the two that help fight off infections. The low  red blood cell counts mean I can't get my port fixed yet; I can't start radiation until they are up to a really good level; and I'm just going to have to live with the tiredness.  I got Procrit again today, which should help.  I remember Dr. Schlabach telling me how it works.  It mimics something that the kidneys produce that tells the bone marrow to make more platelets.  He chuckled and told me my bone marrow just says, I can't do any more right now.  He assured me today that in time, they'll rebound and I'll grow in strength. 

Last night I got online and started looking around for something that might help with the neuropathy in my feet and hands.  Alan had heard something about Lyrica being used successfully.  I found nothing very good about Lyrica, but I did find two or three posts where people had found success using magnesium oxide and vitiman B6.  So I asked about that today.  Dr. Schlabach didn't prescribe the magnesium oxide, but told me that if I wanted to see what it would do I could take Phillips Milk of Magnesia because that's what it's got in it. He also said that it sure wouldn't hurt to try the B6.  The drawback to the magnesium is that it can cause diarrhea!  Now I'm not sure I want to court that demon right now.  I certainly don't have diarrhea all the time like I did for the first and second week of each treatment, but I still get surprised from time to time and get hit with it.  So far I haven't been able to chart any cause and effect.  But I don't think I'm ready to take something that has diarrhea as a common side effect.  I'm going to get some B6 and start on that.  My feet don't really seem much better from the Elavil, and now I understand.  Dr. Schlabach today said that the Elavil is to keep the pain from neuropathy under control, that it really doesn't treat the nerve damage.  Well, it must be doing that, because I really don't have much pain at all since they told me to up the dose.  Of course, I really didn't have lots of pain from it.  What I do have is this numbness or the prickly feeling.  One of my chemo sisters explained that it's like walking around on blocks of wood.  That's a pretty good description too.  Today I was just standing in the parking lot on my way out of the office and I got off my center of gravity a bit and just got off balance.  There was really no danger that I would fall, but I'll bet I looked a bit drunk!  In my hands, it just impairs my ability to do normal things.  Today I had two instances that really annoyed me.  I was paying for my lunch and needed to get six cents out of my change purse- I couldn't get my fingers to work to pick out the coins.  The other was getting something out of the cabinet for Alan this evening. Ok, Ok - I knew exactly where it was and he didn't and it's usually easier for me to just get it than to try to explain where it is.  Tonight he had to get it, because I couldn't get my fingers to work to pick up the container that was on top of the container he needed! 

I have two more things going on that are quite minor, but I'll report on them anyway.  I stopped wearning mascara a couple of days ago.  My eyelashes never did completely fall out (yet anyway) but they are gone from the middle part of my eyelids.  So mascara just accentuates that they are really thin and mostly gone!  I've also developed sores on my fingers.  Only two are really bad.  These sores are at the tip of my finger right where the nail meets the edge of the finger - on the side.  The skin has split open and it's a painful little place.  My index finger and my thumb on my right hand are the most annoying, especially when I'm trying to use a keyboard or pick up something.  It's really not so bad, but I'm trying to post all the symptoms that I think might be from these treatments - and that's exactly what I think this is.  

I'm planning to work again tomorrow. I feel more comfortable knowing that at least my white counts are beginning to climb.  And I'll just do what I can do. 

Tuesday, November 10, 2009

Work, tired, and fixing Sophie

So here's the short of it,
I worked today even though I'm still enormously tired, and Sophie got fixed today!

And here's the long

Today I worked a full day but I was so tired!   I did several things by phone and e-mail, but a couple of times I found myself just so tired I was nodding in my chair!  I took the little ceramic heater that Russ brought me to the office and put it right near my feet and it helped a lot.  Russ reminded me about how he and Dad had a conversation that if your feet are warm all the rest of you feels a lot warmer too.  I felt that today.  I had to keep adjusting it, but I imagine I'll figure that out pretty quickly.

Even though my other symptoms were not as severe this time, this weariness is almost overwhelming.  I'm supposing it's my low platelet counts - I'll get an update on that tomorrow.  Apparently, even though radiation therapy can have tiredness as a side effect, Dr. Gefter doesn't expect is will be quite as bad as I feel now.  He actually said that if I plan to take a daily nap, I should feel OK.  Naps or even a good night's sleep don't really make this tiredness I have now go away. 


Sophie had a big day today.  A big day for a big puppy!  She went to the vet this morning and came back home spayed!  Dr. Carter, who is also our neighbor, did the surgery and gave us a bit of time late this afternoon when we picked her up.  She's just now 6 months old, and the picture is a good scale about how big she already is. It's funny, but she really likes to rest in that position! Her official weigh-in at the vet's this morning was 56 pounds. The assistants at the vet's office told Alan that most dogs don't grow much taller after 6 months old, but that they do gain weight.  She is hungry all the time, so I have no idea how much more she's going to grow.  I really sympathized with her this evening.  She doesn't even want to eat anything, and she's walking very slowly.  She goes to the bathroom and comes right back in to lie on the rug and sleep.  She's nauseous and has thrown up a couple of times.  I guess it's the anesthesia.  I hope a good night's rest will make her feel lots better tomorrow.  We are supposed to keep her quiet for about 3 or 4 days.  I hope that Lola the cat cooperates and doesn't aggravate her too much. Anyway, Dr. Carter let us know that big dogs who still have a very small, immature uterus sometimes have to have a larger incision, just because her ovaries and uterus are  way down in there next to the back and the body is so broad.  Anyway it's very apparent that she's uncomfortable tonight.  When I have been at my sickest, she has been lying on the floor right next to me no matter where I plopped down. And if she hears anyone coming near me she positions herself between them and me and gives her low woof woof sound.  We've made quite a bond with me being sick while she's a puppy.  Right now she's very sleepy and rolled over on her back with her legs spread out so her incision is very visible.  Lola can hardly believe that she can actually walk around the den without Sophie trying to herd her somewhere!

Monday, November 9, 2009

Work, Doctors appointments, and weariness

So here's the short of it,
I worked most of the day today, had a consultation with my radiation oncologist, and the whole day was overlaid with a deep weariness.

And here's the long

I made it to the office almost on time today and spent most of the day on the phone and the computer doing those things I can without being in the schools.   The office was chilly today, so tomorrow I'm going to take the little ceramic heater that Russ brought and keep my feet warm that way.  Two or three times I got very weary and almost thought I'd be able to close my eyes and sleep sitting there in my chair! 

I had a doctor appointment this afternoon for a consultation with my radiation oncologist, Dr. Gefter.  It was a very informative appointment.  Alan, who takes notes while I listen, got two pages of notes!  He reviewed my pathology reports, discussed the way radiation will be administered, and talked about my current  state.  The basic jist of the appointment is this - I'll have to have 36 radiation treatments.  I'll go every day Monday through Friday.  The last 8 treatments are a boost, where a higher level of radiation is directed right at the surgical bed.  He eased my mind about the place where there is no margin.  He agrees with Dr. Witherspoon that since she took all the tissue right up to the skin that there is not a concern that there's not a margin. He says that he doesn't want to start the treatments until my blood counts are way back up and I'm feeling much stronger.  With that in mind he's anticipating that we won't start until the week after Thanksgiving.  That means that I'll be here with no overnight traveling until the middle of January.  

Apparently after the first two initial visits which last an hour and a half or two hours while he maps out everything and makes sure all the settings are correct.  After those visits, the actual time in the radiation itself only takes about 15 or 20 minutes.  So Dr. Gefter says that radiation actually just gets boring and annoying - that patients just get tired of having to come every day for so long.  He did say that the radiation will make me very fatigued, but he thinks I won't be nearly as tired as Chemotherapy has made me. Apparently blood counts can be affected by radiation, but he thinks it would be unusual if I were affected as much as I have been by the chemo. He says that most radiation patients should plan to take a nap in the afternoons to help with the fatigue.  You know with chemo I sometimes take the naps, but it doesn't help the overwhelming weariness.  He also talked to me about the neuropathy and said that most patients have improvement but that it often takes as much as 18 months. Dr. Gefter encouraged me to stack my diet with lots of iron rich foods, to begin to walk as soon as my feet can stand it, and to buy some diabetic type shoes.  He recommended a New Balance shoe. 

So I have a few weeks to work on getting my strength back before I start the radiation.  I imagine that I'll also have that surgical procedure to correct my port done beforehand.  I am still so tired.  I don't feel like I could even sleep enough to make get rejuvenated. 

All in all today has been a good day.  There was a time when I first began chemotherapy that I couldn't imagine getting to this point.  I am so grateful to think about my strength just returning bit by bit every day.

Sunday, November 8, 2009

So here's the short of it
 I'm quite tired and my feet are numb or tingling.
We enjoyed a brief visit from my brother Russ and Tina.   

And here's the long

Today has been about the same as the last few. My feet may be getting a little better, especially my left one.  It's more tingly than numb today and I feel like I have a bit of feeling in it.  My right foot is tingly sometimes too or has shooting pains,  but more often than not it's just numb.  I've had a couple of times today when I've sort of lost balance a bit.  It's such an odd feeling to be just standing or walking and kind of lose balance.  I haven't fallen, but I can definitely understand Lori (my oncology nurse) telling me to be very careful not to fall.

Russ and Tina came up to Atlanta to take care of some house business and came on up to Chattanooga for a brief visit with Mom.  They had intended to stay overnight with her, but Hurricane Ida is making its way for the Gulf Coast so Russ made his way back to be on hand for business.  He took the time to look over some of the things that have come in over the last few weeks regarding finances and I'm sure that was a real comfort to Mom.  Tina stayed for a little longer visit with Mom and then headed back to Atlanta with that big dog Luke!  It was really nice to see them even if only for a bit.  Russ brought me a little ceramic heater that he had because I've complained about my cold feet several times on the blog.  It will be nice to warm them up in the evening!  It does seem to be a part of the neuropathy that my feet and fingers are cold. 

My tiredness is overwhelming!  I know that I will grow stronger every day, and I'm eager to have more energy. I also know that once I start radiation treatments they can possibly make me tired.  I imagine that I'll have to get my port fixed before radiation can start, and I know all my blood counts have to come up.  Tomorrow I have a consultation with my Radiation Oncologist, so I'll have much more definitive information to share on tomorrow's post. 

Saturday, November 7, 2009

Numb feet, ridged nails, and a birthday celebration

So here's the short of it,
My feet are still numb, my nails are a map of my treatments, and we had a joint birthday celebration tonight.  

And here's the long

I believe that my left foot is getting a little better today and the big toe on my right foot has had a tingly feeling rather than the numbness more often today.  It's still very annoying.  Today I realized why I'm sometimes off balance. The bottoms of both feet are numb most of the time...it's more on the balls of my feet and my toes.  I have some feeling on the heels of both feet.  Anyway as to the balance issue.  Since I can't really feel my weight distribution, I think I sometimes end up with my center of gravity over my heels.  So suddenly I'll feel like I'm falling sideways or backwards.  I haven't fallen yet I've been near enough a wall or a person to catch myself. I've been wearing my fake crocs.  They have little bumps on the inside and so I think I've been getting massaged most of the day.  I'm very hopeful that the tingly feeling is a sign that I'm getting better. 

Tonight I thought I'd share about my nails.  My fingernails have always been rather thin and hard to grow, so I keep them cut short and don't paint them at all.  I knew lots of people lose their nails during chemotherapy and I thought I surely might.  Well, I haven't lost any of them yet, but there is a map of my chemo treatments etched into the nail.  I have a ridge and a white line running horizontally across my nails.  It's pretty interesting.  I can see four distinct lines so I suppose I still have at least one more coming along.  I didn't really notice this until a few days ago. It's pretty interesting.  

I spent much of the day resting today.  I didn't leave the house at all and don't intend to go anywhere tomorrow either!  Liga has taken over doing the grocery shopping for us - it's a great help.  So tomorrow, I'll have another day when I'll try to get in a big afternoon nap.  I think one of the things I miss so much is my strength and vitality.  I'm just pretty tired - I think it's the anemia.  I'm eager to be stronger again. But I'm planning to work next week and want to get rested up this weekend.

We had a joint birthday dinner for Liga and Valdis tonight.  MaMa, Mommy Anne, and Mia and Clyde joined us for a great dinner.  It's pretty amazing to have our youngest turn 21 years old!  Time sure has flown by.  I have such a clear memory of the day we sat in the office at the orphanage and they brought the kids in to meet us for the first time! 

Friday, November 6, 2009

Anemic Tiredness, Neuropathy, and Birthdays

So here's the short of it,
I'm really tired, my neuropathy is hanging on, and our youngest is 21!

And here's the long

Today has been another pretty good day.  I am awfully tired and I'm sure that's because of my low blood counts.  I had a Procrit shot on Wednesday so maybe by the time I get back next Wednesday my counts will be better and I won't be so tired.  Drug induced anemia is not such fun.   I have such a hard time getting up in the morning anyway.  I've never really been a morning person.  (How on earth did I manage all those years when I worked in schools that started at 7:00 in the morning!)  Anyway, I'm glad tomorrow is Saturday - I'm planning to just sleep until I 'm tired of being in the bed. 

I'm thinking that the neuropathy in my fingers may be getting a little better.  It's such a weird feeling.  Tonight I reached in the silverware drawer to get three knives to put on the table and I couldn't tell how many I had in my hand.  It's amazing.  I didn't know that I usually do that just by feel and not by looking.  I know I count them out if I have lots of people, but I guess for 3 or four I'm just used to doing it by feel.  My feet don't feel a whole lot different.  I have had a little more tingling today, especially the left one, so I'm hoping that's a good sign that things are moving in the right direction.

Today is Valdis' 21st birthday.  Alan and I took him to lunch - his choice was PF Chang's.  It was a lovely lunch.  I still remember the first birthday we had him - his 6th.  We really thought long and hard about how to celebrate their birthdays since they are only 3 days apart and came to the decision that we should let them each have their own day.  During the celebration for Liga he disappeared.  I found him in their room, on the floor crying.  He looked up at me and said "I'm never going to get a birthday."  Needless to say for the next few years we celebrated their birthdays together.  He told us today that he has a box where he has all of the birthday cards he's ever gotten since his 7th birthday.  Tomorrow we are actually having a small get together of in-town relatives to celebrate their birthdays together. 

Thursday, November 5, 2009

So here's the short of it,
Chills and neuropathy

And here's the long

Today I've felt a little under the weather.  I am just so tired.  I guess that the low platelet counts and low hemoglobin are the cause of that.  I've been chilled most of the day and have had a nagging headache most of the day.  I just couldn't really ever get warm today.  I worked at my office most of the morning and then went over to the Central Office for awhile.  But I did go home a little early today.

My horrible diarrhea has mostly gone, but I'm still left with something that reminds me of the symptoms of  Irratible Bowel Syndrome.    One of my chemo sisters who is about a year and a half out from the end of her treatment told me that she still has to carry a change of clothes with her.  She has such an amazing attitude though - she says - look, who cares, I'm here and I'm cancer free!  I do hope I grow stronger and this symptom gets better and better. 

The neuropathy in my feet is certainly not getting any better ... unless the changing symptoms indicate that it's getting better.  Today my feet have been so cold even after I put on some thick socks when I got home.  They've alternated between feeling  numb and feeling prickly to a stabbing pain in my right foot on the top and sometimes on the bottom at the joint where my toes join my foot.  I'm hoping that it will just get better and better.  As to my fingers and hands - I've noticed that it's hard to get the right change or to pick up earrings, or to manipulate anything small.  They are not nearly as affected as my feet, so I'm going to go on the assumption that they'll get better faster and in the near future!

Tonight I'm sure grateful that my hands don't hurt like my feet do!

Wednesday, November 4, 2009

So here's the short of it,
Neuropathy, low blood counts, and a runny nose! 

And here's the long

I had a Herceptin infusion today, and we talked about my neuropathy.  I'm going to spend another week on the Elavil. Next week if it hasn't improved, we'll talk about something else.  My dear cousin Jeanna, who has had her own great battle with Cancer sent me some good information about neuropathy today.  It was good information for me to read, although a little disheartening.  I tried soaking my feet in warm epsom salt water last night.  It didn't really help the numbness or tingling at all.  I've also had three or four instances today of just losing my balance.  Walking gets better after I've warmed up.  When I first start taking steps it's like starting out on feet that have fallen asleep, but as I walk it gets easier.

Today, one more time, I had my infusion in a vein instead of in my port.  And it will be a few weeks before my blood counts are good enough to have the surgery which will fix my port.  I noticed today that the Herceptin made me cold.  Alan commented that he thinks I've been cold several times before when I've had Herceptin. I'm going to start trying to chart that.

My blood counts are abysmal.  My granulocytes, which are the white blood cells that really help keep germs away are really low.  My platelets were so low that I got another Procrit shot today.  I should have known they'd be really low because my gums are bleeding and I'm bruising really easily - I noticed two big bruises on my arms and have no recollection of what might have caused them.  I still have specific instructions not to be in schools because of the risk of catching something nasty, especially the flu.  When my blood counts get high enough and the office gets the H1N1, I'll get vaccinated.  They haven't even gotten the vaccine yet though.  I'm going to work tomorrow, but I'll be sure to stay away from possible contamination.

I'm tired, but I think that I'll continue to get stronger now that I'm not getting the Abraxane and the Carboplatin.  The Herceptin causes me to have this horrible runny nose.  It's like tears running from my nose, and it happens at the most unexpected times.  At this point it's just annoying because my other side effects are so profound. It would be nice to think that there will be a point where it will be the worst of my side effects and I'll be more than just annoyed at my weeping nose!

Tuesday, November 3, 2009

Feet and Birthdays!

So here's the short of it,
I am preoccupied by my feet, and it's Liga's birthday! 

And here's the long

I guess I wore myself out yesterday!  I had such a hard time getting started this morning.  Of course, a part of that is that in the middle of the night, Sophie started her low woof-woof, that lets you know that she is aware of something.  She thought there was something outside.  I investigated (without really going out the door) and never did see anything.  I'm thinking it might have been the orange tomcat that started thinking he owned our back yard after Suni first died and we didn't have a dog!  Anyway, she was very agitated for about an hour. 

The other thing that kept me up was my feet hurting most of the night.  Pain killers don't really touch this feeling and it's much worse at night when there's nothing else going on in my brain and I'm trying to relax.  During the day I sometimes forget how  bad they are.  Two times today on stairs, I almost lost my balance.  Once coming up our front steps here at home, and the other time going down the steps at work. Other times I'm really aware of how bad they are because I have either tingling sensations or stabbing pain. 

I'm eager for my Herceptin tomorrow afternoon,  I'll get my blood counts which will let me know how much I have to stay isolated, and I can talk about whether or not I can do anything more about my feet and hands.  I don't think my feet are any worse, but my hands sometimes definitely feel like they are getting a little worse - especially my thumbs and little fingers. 

Most importantly in all this is that today is Liga's 22nd birthday!  We took her to lunch and had a really nice time.  She says that it seems like 22 is a whole lot older than 21.  I think I remember feeling that way too - but it's been so many years ago...maybe I'm just making it up because it sounds right. 

Monday, November 2, 2009

It feels good to be working

So here's the short of it,
I'm feeling better and working!

And here's the long

Today I worked all day!  I got out of bed by 6:30 this morning.  It has probably been since May that I've gotten up that early, unless it was to stagger to the bathroom and back to the bed.  I've never been a morning person, but I was able to be at a the office in time for an early meeting, then out to an elementary school for a meeting, then to my office for the rest of the day. It felt really good to put in a full day of work!   I'm planning to do that again tomorrow. 

Alan is cautioning me to be careful as my blood counts are still very low, but I feel so much better than I have in months and I guess that "cabin fever" is really setting in.  I am very hopeful that my strength will return pretty quickly.  I really want to be in a place with my health that I can get back into schools.   Today two of the women in my first morning meeting were both colleagues who have been through breast cancer treatment.  Both of them told me that for them radiation made them exceptionally tired, but that there weren't debilitating side effects.  Perhaps that will be my experience as well! 

My Native American friend is going to burn a sage smudge for me in a day or two.   I'm so grateful that I have friends from so many different faith backgrounds who are offering prayers for me in so many different ways to the God of us all.  

Sunday, November 1, 2009

Getting acquainted with patience

So here's the short of it,
I'm feeling better, but my neuropathy is about the same.

And here's the long

This has been another pretty good day all in all.  My diarrhea is almost gone.  I still have an urgency that is not normal, but I don't have to stay close to the bathroom all the time. And my nausea is pretty much under control almost all of the time.  I do have to be careful what I eat.  It's hard to believe that I've given up my morning coffee.  I wonder if I'll ever be able to go back to it, or if  I'll even want to.  It is a sure way to bring on the nausea even if I've taken nausea medicine. Tonight Mom was up for dinner and she reminded me of the dried the apples we harvested from the apple tree that Dad planted a couple of years ago.  We've been making plans for her to make her fried apple pies (which she bakes these days) when my taster comes back.  We'll need to wait awhile still.  I'm tasting things, but it's not back to normal yet.  I wonder if there are certain tastes that are just changed for good. Apparently there is some risk of radiation therapy causing taste changes as well.  So we'll see. I've been a bit chilly today.  One of the things I've noticed, is that my head is cold all the time.  I'm wearing a toboggan almost all the time now because of that. 

I have an appointment on November 9th with my radiation doctor.  It is looking like I'll start the radiation sometime right after Thanksgiving.  So I should be all finished with that piece by the time school starts back in January!  Anyway that's the plan I'm going with right now.  Of course there's that quote that's been attributed to many different people - "If you want to make God laugh, tell him your plans."  So we'll just see how that all pans out!

I'm planning to work tomorrow.  I may only work a 1/2 day, but I'm going to try to make an 8:00 AM meeting.  I don't think I've been anywhere that early since my surgery.  Thank goodness, I had a nice nap this afternoon.  If I can get myself in the bed at a decent hour tonight, I think I'll be fine. 

My neuropathy report is one of frustration.  I'm taking the increased dosage of Elavil, which is supposed to give me some relief.  Apparently fatigue can be one of the side effects of Elavil...   My feet are not any worse.  My right foot is considerably worse than the left, although the left is sometimes more painful.  My hands are about the same, but my fingers and thumbs are a bit worse.  Apparently the ibuprofen I've been taking to try and help with the pain isn't very effective. Alan keeps telling me to be patient that it may take a long time for it to go away and it may be hard to notice that it's getting better a little at a time.  So maybe patience is another one of those lessons that this cancer is bringing to me.  I'll have to admit, patience is something I could work on.  Many years ago, my younger brother was telling his oldest daughter who was maybe three or four at the time that she needed to have patience.  She looked at him with great frustration and said, "But Daddy, I don't know patience."  She certainly summed it all up there - I'm not especially well acquainted with patience either! So perhaps this neuropathy will give me an opportunity to come to know patience a little better.