Disappointment!

So here's the short of it,
My platelet counts were too low for Chemo today.  I'm so disappointed.

And here's the long

Well today when my labs came back my platelet count was at  35. which is below the level I need to be able to tolerate the big drugs.  Dr. Schlabach said that my bone marrow is just saying "I just can't do any more."  Even with the weekly Procrit shots my bone marrow is just not able to step up the production of platelets.  Normal platelet counts are 150. - 450. If I get as low at 20. there is a possibility of spontaneous bleeding.  Right now, I have instructions not to handle any sharp implements.  Lori, my oncology nurse, told Alan that I couldn't vacuum or lift a skillet because you never knew if you might get a cut from these household implements!

My white counts are below normal as well, but they are just below normal levels  4.1  normal range 4.5 - 10.5.  Hemoglobin is also down. 9.4  normal range 11.0 - 18.0 - of course this helps explain the fatigue.  Another week will let everything get a little more normal. Here's a great link about low blood counts to explain all of these

So today I got another Procrit shot and my Herceptin.  Next week we will try again.  Even though Dr. Schlabach says I can't eat enough red meat toget my platelets up, Alan insisted that I eat some red meat, so we picked up Mom and went to Wendy's so I could get a chili.  I was more eager to get a salad, because I can have raw foods this week.  (I hope)

Pennie and Myra, Alan's sisters, will be here the end of this week.  Having my treatment postponed for a week makes it possible that I'll be able to visit with them.  Russ and Steve, my brothers, are coming up late the next week to do some more work on helping Mom close out Dad's accounts and help her with some transition kinds of things.  And having my treatment next week means I probably won't be able to have much time with them to be involved in those things.

So all in all, my blood counts have put me two weeks behind the originally proposed schedule for chemotherapy.  Of course, we knew going in that the proposed schedule could change.  I've done remarkably well so far.  I haven't had to be hospitalized, I haven't been in the pain that some people experience, and I have only one more Chemo treatment to go!  

Anticipation

So here's the short of it,
Oh my, the cough, the joint aches, the anticipation for tomorrow!

And here's the long

My cough is just horrible!  The Musinex keeps it under control. But I am only supposed to take it one time every 12 hours -- by the time I'm to 10 hours I'm coughing so much that it activates my gag reflex - even with cough drops and hot honey tea.  And after I take it, there's another bit of time before it really kicks in.  And this embarrasing detail, I'm coughing so hard and so much that I'm wetting myself.  Yes, I know the fix and I'm doing that, but it's yucky. Tomorrow, first question, Can I please take the Musinex more often.  That might be all I need.  

This morning again it took me awhile to get my nausea and diarrhea under control.   I also waited to make sure I didn't have temp. before I went in to work.  I just had a few things that really couldn't wait until I get back to work after a treatment, and I got them all done!  This is the third time that I was hit with a diarrhea urge while in the car on the way to work.  I made it to the office and just ran in to the restroom down on the first floor, whew! Once, I just had to turn around and come back home and change all my clothes. 

 This evening Mom made dinner for me and Alan.  Back in the early spring, when Dad was hospitalized for a urinary tract infection, Alan went shopping for a plant.  I think he was looking for tomato plants, but what he found was broccoli.  Anyway, this afternoon, Mom went out into the garden and found enough broccoli for our dinner!  It was a bittersweet moment for sure. 

I guess it's the Abraxane, but my left shoulder joint is so achy.  My back hurts much worse than it has during the whole treatment, and my muscles ache like the beginning of the flu.  Lori, my oncology nurse, told me that achy joints and muscles are the most common complaints for people using Abraxane - and told me to take ibuprofen.  And that's just what I'm doing.  

I am pretty eager for tomorrow to come and go.  I don't like wishing my life away, but I want to go to the doctor and have everything be go and get that last treatment. Good news is there's no temperature today.  Then, once I start back on the upswing, I think I'll really experience some kind of lightness of being! 

I know I'm using the blog to detail all my aches and pains and weird things that happen to me, as well as my great grief at losing my Dad, but I do want to say, that all in all, I think I'm doing pretty well.  I dare not say that nothing worse could happen, but somehow I've found the hand of God in all of this and I'm holding on tightly.  

So here's the short of it,
I am sick tonight! 

And here's the long

Well, I slept in a bit this morning and woke with no fever.  I was having more nausea than normal, but taking my time with crackers and some unsweetened tea and nausea medicine, I got it under control - so I decided to go to work.   I hadn't been there long til I started feeling feverish.  So I went down to the school nurse's office - I think it's fabulous that my office is in the same building as the head of school nursing! Anyway, they took my temp and it was just low grade - 99.  Actually like lots of people (including my Dad)  I run a little low usually.  Anyway, I stayed on and got in a half day work. 

This evening, Mom and I went over to have dinner with Mommy Anne.  If I have my treatment on Wednesday, it will be at least 2 or 3 weeks before I'm able to see her, so I wanted to be sure that I got a chance to see her.  We had a nice dinner and a lovely visit.  I started feeling a bit feverish so right after dinner so Mom and I left.  We asked Mommy Anne if she'd like us to walk upstairs with her, and she said "No, I'll just stay down here and visit for awhile!"  I was so pleased. 

Anyway when I got home I took my temp....nothing.  But 20 minutes later, I'm thinking something is wrong, I have burning eyes, burning urine, chills - temperature check again and I have 100.5.  I'm supposed to get in touch with my Doctor if it gets to 101.5.  Hopefully that won't happen. 

I'm eager to get to the office tomorrow even if it's for just a half an hour.  I can't access all the bells and whistles of my e-mail on the Outlook Web Access (owa) for those of you who work with me!  And I have a couple of things that I don't want to wait the week or two until I'm feeling better if I have my treatment on Wednesday! Stuff that impacts kids! So we'll see how it goes.

In the meantime, I'm going to take my PM meds in 30 minutes (have to watch the timing) and then go on to bed.   Maybe a good night's sleep will do a small miracle.

So here's the short of it,

Here at the end of the day, I'm not feeling so well.

And here's the long

Today was a lovely day.  I slept in later than I think I have for many many years.  I was also up very late.  My days and nights are so confused.  I felt pretty good for the first part of the day (late morning and early afternoon was the first part of my day.).

At three this afternoon there was a wonderful birthday party for two year old Elijah at Mom's house.  What a fun afternoon.  Elizabeth made pumpkin cupcakes with cream cheese frosting. Elijah loved the frosting and managed to get a fingerful of icing from almost all the cupcakes!  He also chased balloons, danced to music Elizabeth has on her iPod that is his playlist, and generally made all the grown ups smile.

By late afternoon, everyone had packed up and gone.  Tonight is Mom's first night alone at the house since Dad died.  Of course, she's been there alone, most of the time since his surgery, but this seems like some kind of marker.  In my mind at least.

Anyway, this evening I took Sophie out to let her run with her girlfriends in the circle, and when I came in realized that I was chilling.  I took my temperature and have a bit of fever. I also started having all this achy feeling.  Weakness, fatigue, and achy joints and muscles are all common side effects of Abraxane, so I'm assuming that's what it is.  I'll be sure to tell the doctor about it on Wednesday. So I had all these big plans to work tomorrow.  I suppose I'll make that decision after I wake tomorrow and take my temperature and see how I feel.  I've still got this awful cough as well.  I'm using musinex and it's certainly helping, but I still have some cough even when I'm taking it right on time.  If I get a little behind schedule, I just have this real hacking cough.

In the meantime, I really do want to feel better.  It's been 16 weeks since I started the Chemo treatments and of course I have better days and worse days, but I haven't felt right since then.  I think once I start the uphill from the last treatment, it will bring such a feeling of lightness!  There's another very weird side effect that I'm eager to be rid of.  You know, how you know your own smell.  Your bed smells a certain way - your dirty clothes have a smell all you.  I even buried my face in my Dad's bathrobe to inhale the scent that I recognized as his the other day.  The smell of your own sweat is very recognizable - the smell of your urine and bowel movements are unique to you.  Well, I don't even smell like myself - and I really don't like how I smell.  I think I should get back my old smell -that will make me happy! So, I'm thinking just a few more weeks of smelling like a stranger is living in my skin.  Can't wait.

So here's the short of it,
Details are so interesting. 

And here's the long

Surely this cough I have is some kind of allergy! I had a dose of zithromax and within 3 days a round of Levaquin!  Surely if it was a bug those would have knocked it out.  I'm now taking Musinex.   If I stay on my one every 12 hours schedule, the cough is pretty calm - but if I don't I really start hacking away.  I'm eager to have this cough gone.

This evening, we decided to use one of the pieces written in the journal that Emily kept at the hospital.  She asked Gene's caregivers and visitors if they would mind writing in it.  Many did.  Emily brought it home after Gene died, and it was at the house after the funeral.  Several of the family took an opportunity to write in it during the days before and just after the funeral.  Tonight we chose to use the piece written by Elizabeth's husband, Josh.  As I typed the words he wrote, I was so tearful I could hardly see the words.  It is a beautiful tribute. 

Elizabeth and Alan took on the tremendous task of copying the legal pads that Dad used to write in.  They are so interesting.  He was a poet, a philosopher, a gardener, a planner, a letter writer, a pray-er, and probably lots of other things.  These pads show all these sides of him. In one pad you might find, a letter to someone, a garden plan, a meditation on evil, a prayer list, his monthly activities, a Bible verse he had chosen for meditation.  It's really pretty amazing.  The two of them got it together and spent the equivalent of at least a day getting a copy for each child.  It will be priceless.

I'm feeling pretty good today except for the darn cough.  And of course pretty good is pretty relative.  I'm awfully tired and achy.  I understand that one of the side effects of Abraxane is achy joints and muscles.  I didn't have that with the Taxotere - but all in all, I think I'm happy with the Abraxane for these last two treatments.  I'm in a positive thinking mode that the Procrit shot from last week will get my blood counts up enough for me to have my last Chemo treatment on Wednesday.  I looked up how Procrit works and I'm amazed.  Our kidneys produce something called erythropoietin.  It tells the bone marrow that it needs to produce red blood cells - Procrit is a synthetic version of erythropoietin.  It should be in there telling my bone marrow, make more red cells, make more red cells!  Who knew (except you doctors and other medical people) that your kidneys talked to your bone marrow and told them how many red blood cells they need to make!

In the meantime, I'm  trying very hard to continue living in the now and not racing ahead to Wednesday.

Staying in the Moment

So here's the short of it,

I'm trying really hard to stay in the moment.

And here's the long

It' s really difficult for me to stay in the moment now.  I'm feeling pretty good although I'm awfully tired.  I worked today and felt like I am just a million miles behind.  There are so many just routine things that I usually have done by this time of the year that I just haven't done.  My supervisor/director, Margaret, came by the office today and her comment about it all was something like "well, just try to make a dent in it."  And that's what I'm trying to do! She has been so supportive.

I had an appointment with my surgeon this morning, and she says the surgery looks great, and that I don't need to come back to her for four months.  By that time, it will be time to start having mammograms every 6 months for awhile.  While there, we started talking about my treatment schedule and radiation and how that will impact the breast.  And I just started focusing on this coming Wednesday being my last Chemotherapy treatment.  Of course, my blood counts have to come up. I so hope that the Procrit shot that I got this last Wednesday will work it's magic and those counts will be high enough!  I am so eager for Wednesday to get here!  I've been trying so hard all through this to just live one day at a time and not think about tomorrow or the next treatment, or whether or not I'll be really sick when I have the next one.  I've been pretty good about it most of the time, but as the time for the last one grows nearer, I keep thinking about it.  Which chair will be available.  Will Lori ( my regular Oncology Nurse) be there.  Will I feel like celebrating that afternoon.  How sick will I be? Maybe I'll get away without being too wiped out.  Will my red blood counts hold?   These and many more questions are just swirling around at the edges of my consciousness.  And whatever I'm trying to do one of them will pop through to interrupt my thought processes. 

Last night I did pretty good sleeping on my other side - the side where I don't have the port, and I remember now why I started sleeping on my right side.  My left shoulder gets really sore if I sleep on it!  So maybe I could learn to sleep on my back.  I think the problem with that is that if I'm on my back I snore as loud as a big train.  I come by that honestly, both my parents could raise the roof - especially if they were snoring together!

At my doctor appointment today, she asked me if Dad had been sick for a long time.  I was struck hard one more time by how tragic the whole thing was.  He was so active and healthy.  He drove himself to Kiwanis, to the Christian Businessmen's group, to Gideons, to the Master Gardener's group. The Wednesday before his surgery, he gave a presentation at his Church.  He was active, busy, and extraordinarilly alert - and the surgical complication seems so unfair.  But I will say this - even in his illness, he continued to be an example of how to live.  I hope I can hold on to his last lessons.

A Mixed Bag

So here's the short of it,
Just some random thoughts tonight

And here's the long

Today I stopped by the cemetery.  There are several sections open for burials now; Dad is buried in section DD3.  There is a small gravel access to a spot very near his grave.  Since he was buried, seven days ago, there have been five more burials just in this section.  We went to the cemetery together at least once a year for the Veteran's Day celebration, and sometimes for other occasions.  I believe that Dad also went by himself from time to time.  It's only about 10 minutes from where we live.  He often said that he felt very good knowing that he would be buried there.  I do too.

Yesterday I asked why my port area is so achey some of the time.  My nurse pondered a couple of minutes and asked a couple of questions.  "Do you sleep on that side?" she said.  Well, of course that's the side I prefer to sleep on, and it turns out she thinks that's what's making it achey.  I tried last night to sleep on the other side.  That's hard!  I'll have the port until sometime in June or July or maybe even longer, so I'm going to keep working on that.

This morning Carrie, our secretary, stopped by the office to offer her condolences.  As she spoke about her own father's death, she began to tear up - and shared that it's been several years since her father died.  We were both weeping and I found myself understanding how years later a person can still be so emotional about the loss of a parent.

I got quite a bit of stuff done today and feel pretty good about the day.  I was so extra careful not to expose myself to anyone or anything that might be germy.  I know that there's lots of flu in the school buildings, so I'm doing everything I can from the office.  I really wonder how long it will be before I'm able to just kind of get back to normal.  I understand that sometimes radiation can cause fatigue and low white counts.  Apparently not for everyone though.  So I'm hoping I'll luck out of that one..... there I go worrying about the future instead of just staying in the now - I'm really trying though.

From my office I can look out across 40th Street to the beautiful Forrest Hills Cemetery.  It's very different from the very uniform look at the National Cemetery, but I still found it strangely compelling today.

Tonight Elizabeth was reflecting on Dad's life and she said that we were extremely lucky to have someone like him in our lives for so long.  She's right.  We were blessed beyond measure.