All Systems Go(ing)

Hi! Megan here.

Dad just asked me to post a quick update to let everyone know that Mom was released around noon today (Thursday, Jan. 12). She got more blood last night, and is feeling pretty good now that she is refueled.

Thanks for keeping her in your thoughts!

Megan

Latest Update

Greetings.  And thank you for your support as you share in the journey that is "Being Kathy Dorn."

 

We haven't posted anything in a month, which has mostly meant good news.  Kathy's 7 December Days of chemo were finished on the 28th.  Her last transfusion was the 23rd, so some stabilization seems to be happening some of the time.  Today, her hemoglobin just dipped below 8 (the threshold for a transfusion) and her platelets and white blood count are always low, but usually a bit above the critically low mark.

 

Thus, she was strong enough to sew some Christmas presents (we finally celebrated with the kids and grandkids on Jan. 2) and fully intended to use her next energy hours to share more thoughts on this site.  However....

 

What I have been referring to as "digestive issues" (I became quite accustomed to hearing that I was full of "&#!t" during my political years, but I hesitated to say Kathy was also full of it until the Dr. confirmed it) have made Kathy more and more miserable over the last 10 days or so.  So after trying more and more powerful over the counter remedies, we finally capitulated and headed to Urgent Care yesterday afternoon (the 6th) around 4:30.  By 6:30 they had wheelchaired her to the ER, and by 9:30 she was back on the 5th floor at ISJ-Mayo.  A CAT scan revealed diverticulitis (inflammation, pressure on the system that could trigger a very dangerous leak).  So she is receiving antibiotics and hoping for relief.  It could be a few days, it could be more than a few.  

 

At least she has been fever-free the last 47 days, and at least being in the hospital isn't all bad news.  She is in good spirits between cramping spasms that she refers to as "contractions" (she is not one to exaggerate pain--her dentist can't believe her refusals to use Novocain).  And, with a bit of luck, these digestive issues, too, shall pass.

 

Be well.  Enjoy each day as best you can.

 

John 

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