This 'n' That

I'm having a so-so day—wish it were a sew-sew day. I'm feeling a little light-headed, so I wouldn't be surprised if tomorrow's blood draw reveals a low hemoglobin. I also have a backache that surfaced last evening out of the blue. Just a little spasm, I suppose, but today was to be a FREE DAY, no aches, no pains. In the meantime, though, I can do a few things including writing on this blog and catching up on my thank you notes.

I've heard from a few people who would like to comment on the blog, but have trouble posting. If you can't get in under your own name, use the Anonymous setting and then sign your name at the end of your comment if you really don't want to be anonymous. However, I want you to know that a response isn't required; I just appreciate that you are with me. Another option is to email me at wtldrn@charter.net.  I treasure hearing from people.

Recently I featured our youngest grandchild, Eliza. You must meet the other three.  
So, here are more photos of the children I love to love.

Here's Sleeping Ruby, 3, Rebekah's youngest.

This is Cora, Ruby's older sister.  She'll be 5 in January.  She'd like her own show on the Disney Channel.

Cora and Ruby with Santa, 

Christmas 2011 

This is Kyle, Eliza's brother.  This photo was taken just as he was waking up on his 7th birthday, his GOLDEN birthday, on October 7th.

 Halloween 2011

John and I are just our scary old selves.  Kyle is Indiana Jones while Eliza the Owl has us all hooting.

One of the very first thoughts I had after my diagnosis was handed down was, I hope I live long enough so the grandchildren remember me. I am especially concerned about Eliza because I haven't had as much time with her and now I can't be with her as much as I would like because of my suppressed immune system. I feel like I'm losing ground somewhat with the others, too. We used to babysit them often and I really miss that. I know it's irrational to worry about this, but I can't seem to shake it.  Some dear colleagues of mine ameliorated the problem by presenting me with a Grandmother Book for each child. Writing in them is not easy as I labor over the most precise and meaningful verbiage, but I hope it will pay off as a way for the kids to keep me in their thoughts. What I really hope is that the chemo treatment buys me some time and I get to the point where we can DO things together again: visit the zoo, bake cookies, read more books, have popcorn and candy at the movies, play house and store, dress up in silly clothes, dance, sing songs, cuddle...

We have Skype, but still...

Fill 'er up!

I had my Monday blood draw this a.m. and my platelet count had dropped to 9, so off we went to Camp Dracula for another refill.  This time we super-sized it -- hold the fries -- so the little buggers start feeling more at home and stick around.

We see so many people we know during our frequent visits to the clinic and hospital.  We've also met many others who are becoming our friends.  It would be nice to have a party and invite them all, but they wouldn't be able to come because they're too sick.  Dang!  Now that's a dilemma.

This is Eliza Schoeneberger, Megan's almost two-year-old.  She brought her brother's hats (two of them), gloves and shoes to Mommy for help putting them on.  The defining accessory, though, is the Mr. Potato Head eyewear.  Is Project Runway in her future?

Here's our little fashionista just hangin' out.

Random Ramblings

Health Update

Petechiae. Pronounced puh-TEE-kee-eye.

These tiny red spots showed up last week on my neck and chest, with a few rogue rascals taking up residence on my left temple. While they are not often a problem in and of themselves, they do signal a larger issue, a low platelet count, which can cause internal bleeding. My platelet count on Thursday was 11,000 (normal range starts at 150,000). This precipitated a trip to Camp Dracula for a platelet transfusion. On Friday my count had risen to only 16,000 so off I went for a refill. I'll have another blood draw tomorrow and we'll see...

I completed my second round of drug therapy (Vidaza) last Wednesday. One side effect of Vidaza is that blood counts can get worse before they get better, which is probably why the petechiae showed up. My hemoglobin has actually stabilized around 9 (normal range is 12-15) so my energy level has been much improved. My white blood cell count is low so I must remain vigilant about not exposing myself to germs. My immune system is severely compromised at this time and I'm so vulnerable to infections. Of course, this limits my time spent with the grandkids, which makes me sad.

My third round of Vidaza begins on Dec. 19.  I feel fortunate that, other than the petechiae, I really have had no troublesome side effects of chemo. I've been fever free since Nov. 18 and have not required red blood transfusions since then either. And my hair has not fallen out! Knock on wood.

John snapped this photo of me in Chemo Bay

during  my last round of Vidaza.

Thank You

Again, I must thank all of the folks who are supporting me on my Big Adventure. The outpouring of kindness is astounding. It humbles me beyond words. Some of you get concerned when this blog is silent for a long period of time. I am sorry for that. Let's do it this way: No news is good news.

The Caregiver

When my mother-in-law became incapacitated by dementia, I saw my father-in-law rise to the occasion in ways I never expected. He was an inspiration to us all, lovingly caring for her in their home for a long five plus years. Yes, he had help from family, friends and home health care professionals, but he was the day to day, 24/7 care provider. Through it all I never saw or heard him do or say anything that indicated he wasn't up for the task. Maybe others heard a grumble or two, but I didn't.

Like father, like son. John has taken up the mantle of caregiving with the same brand of selflessness. Always an optimist (he's a glass half full guy, I'm a glass half empty gal), he is truly my rock. I'm convinced it is as hard to be the caregiver as it is to be the one needing the care. I can only hope that, if the tables were turned, I would be as cheerful, willing, and accommodating as my partner of 46 years has been.

John, thank you for learning how to do laundry, including hanging the clothes on the line; thank you for making me toast while I was in the hospital; thank you for vacuuming, dusting, doing the dishes, along with your regular “manly” chores; thanks for putting up all the Christmas decorations (under my supervision); thank you for showing your love in countless ways. I love you, Johnny D.

Say What?

I'm a big fan of Bartlett's Quotations, an indispensable tool when you need someone else's words to express what you are feeling or thinking. Also, it's great when you need to pad your term paper.

Anyway, I have a few favorites to share with you. Feel free to add your own to the mix.

“Live in such a way that you would not be ashamed to sell your parrot to the town gossip.”

--Will Rogers

“ Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom.”

--Marcel Proust

“It's not true that life is one damn thing after another; it is one damn thing over and over.”

--Edna St. Vincent Millay

“The unexamined life is not worth living”

--Socrates

“The web of our life is of a mingled yarn, good and ill together.”

--William Shakespeare

My personal favorite:

“I haven't eaten since yesterday and tomorrow will be the third day.”

--Jorgen Christian Larsen, my Danish grandfather who, according to my mother, uttered these words frequently right before breakfast.

Life's Big Questions

Why does everything new have to get old?

Why do noses and ears continue to grow as we get older?

Why is it that when women get together they invariably disparage their mothers, as in “Ack! I'm turning into my mother!”? Certainly one of their mothers is worthy of admiration, right? And when they say that, don't they realize (as I have) that their daughters will say the same of them?

Will the children of today ever need to learn to tie their shoes or read an analog clock?

One Last Conundrum

Why does one have to get sick to hear the words, we want you to maintain your weight?

.

Home Again

Hi! We just wanted to let everybody know that Mom was discharged from the hospital at about 10:30 this morning, We are assuming that chemo treatments will begin as scheduled tomorrow.

Thanks again for your support!

Megan and John

11/19/11

After having a good Wednesday that got better as the day went on, Kathy went from bad to worse on Thursday. The chills arrived while reading the morning paper, then the fever.  We finally made it to the scheduled blood draw at 2:00 but the nurses couldn't eliminate the fever either.  I think it was in the 103-104+ range.

So, back to the hospital.  They used cold cloths or ice packs when it spiked around 2 a.m. and when I got there at 8 a.m. she was fever free.  Let's hope it stays away so we can start Round 2 of the chemo on Monday (scheduled for Nov. 21,22,23,25,28,29,30.

Kathy did have some toast and bacon for breakfast and then needed to sleep. I'll try to update this tonight or tomorrow.

John

A Detour

Bad News and Good News:  The bad news is that at I am not a viable candidate for a Blood and Marrow Transplant; the good news is that I am  not a viable candidate for a Blood and Marrow Transplant.  Say what?

Late afternoon on Thursday we (John, Pat Dorn and I) met with Dr Hogan, one of Mayo Clinic's hematologists/oncologists and an expert in BMT transplants. We had seen him in August and after that meeting, I was pretty sure I didn't want to pursue a transplant. But after encouragement from others--family, friends and medical personnel--I decided to kick the door wide open, the door I'd left open in August, in order to at least explore my eligibility.  Nothing to lose, right?

Well, It was the right decision and I didn't lose a darn thing in the process.  In fact, I think if I would have lost had I NOT pursued the exploration.  I can say with satisfaction that I did everything I could and left no stone unturned.

Here's the gist of our meeting:
Blood and Marrow Transplants are dicey for everyone, but dicier for people who have a number of risk factors.  The disease itself, of course, is the biggest risk factor, but pile on a few others and the chance of a successful outcome is greatly diminished.  The risk factors I'm dealing with include my age, the nature of my particular type of Myelodysplastic Syndrome (atypical, with a relatively rare chromosome abnormality), and a history of breast cancer (even though my breast cancer was teeny tiny, removed with a lumpectomy).

What Dr. Hogan was most worried about was that even though I have good health in many ways--low blood pressure, low cholesterol, no history of heart problems--my disease is not under control enough to consider a transplant. I've had only one round of chemo, not enough to determine the efficacy of the drug.  He said I really need to complete 4 or 5 cycles, followed by a bone marrow biopsy, to know if my blood has gotten healthy enough for a transplant.

Add an extremely short list of possible donors to the mix and it becomes formidable.  My siblings are really the only donors to consider because, in my case, anything less than a perfect match would be another risk factor. 

I asked Dr. Hogan what he would say if I insisted that we go through with a transplant.  His answer was sobering.  He said, "I would have grave concerns if we were to attempt it." 

So, here's where we are...
I will continue to have transfusions as needed while I'm having chemo treatments.  In February or March, assuming everything goes as planned, I'll have the biopsy and we'll see.  Dr. Hogan said it's always possible to revisit a transplant if my disease stabilizes.   If, after another evaluation, I'm still not a good candidate, there are other options, clinical trials among them.

So how is this Good News?

Because I actually felt a sense of relief by the time our meeting was over.  Quality of life is more important to me than length of life and post transplant life, with all of those risk factors working against a positive outcome, would most likely be a hell more hellish than Hell. 

My sister-in-law said that  if they told you that a there was a 90% chance of a successful cure after you put in the biggest fight of your life, (which, by the way would never happen for anyone) you may be more willing to go the distance no matter how hard it is.  My chance is under 40%, probably closer to 10%, and that's the deal breaker.

I want to live the rest of my life as normally as possible.  I want to spend time with my husband, our children and grandchildren.  I want to visit with my siblings, my in-laws, whether by phone or in person.  I want to stay connected to my friends.  I don't know how the future's gonna look, because my crystal ball is on the fritz, but I hope to live each day to its fullest even if that means only reading the morning paper.

Next week I have a blood draw on Monday and another on Thursday.  If a transfusion is necessary, it would probably be on Friday.  Thanksgiving week I will start my second round of treatment in Chemo Bay. 

We'll be hosting our family again the Saturday after Thanksgiving, if all goes according to plan. We'll make the turkey and all the rest will be provided by the kids.  If there's some reason they can't come here (I'm sick, the kids are sick), the back-up plan is to go to Megan and Troy's.  We will have much to be thankful for this year.

It's My Party and I'll Cry if I Want To

Oh, yeah...I've thrown myself a big old Pity Party the last few days.  I know all about being positive in times of health crises; however, emotions hijack my intellect and negative thoughts poison my outlook.  I'm not beating myself up for how I feel -- I think it would be worse if I didn't acknowledge my feelings -- but the hard part is getting back on an even keel, not dwelling on the stinkiest aspects of this stinky experience.

So what does a Pity Party look like?  I submit that most people know because they've thrown one of their own.  (Aside: What's the origin of THROWING parties?  I mean, I've thrown showers, birthday parties, anniversary celebrations and I can't recall even one time when I've actually THROWN something. Just wondering.)  In my case, the party "un-favors" included fear, frustration, sadness, anger, exhaustion -- just overall bitchiness.  OK, so John asks how different is that from my everyday demeanor.  But, seriously and, more importantly, honestly, I am trying to teach myself to embrace these emotions because I think it helps me better appreciate the tiniest of silver linings that appear now and then.  I want to be fully human and that means I need to accept the whole kit and kaboodle of this disease and all of its implications.

Full disclosure -- nobody would want to come to one of my Pity Parties; they're not fun.  There's a lot of crying, arguing, and blaming (self and others).  I think my biggest issue is loss of independence.  I've never wanted to be a diva or princess and consider myself to be fairly self-sufficient.  Now I rely on others for so much and it doesn't sit too well with me.  I know the drill -- other people want to help just as I want to help others -- but it's just so damn hard to accept!

Pity Party's over, folks! Thanks for listening.  Oh, one last thing...cancer sucks!  OK, now it's over.

John and I are heading to Rochester this evening ahead of my appointment tomorrow with Dr. Hogan, one of Mayo Clinic's hematologists.  By the weekend we should know if I am a viable candidate for a Blood and Marrow Transplant (BMT).

John's brother and his wife,  Dave and Pat Dorn, graciously invited us to stay at their home in Rochester when we have appointments.  We are so grateful for their kindness and hospitality.  Plus, Pat will come to our appointments to be another pair of ears.  See, that's one of those silver linings!

Love, kisses and hugs to everyone!