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!

Tough Decisions are Really...Tough

Again, I want to express my gratitude for all of the support John and I have gotten from so many.  I started to respond to the people who had posted comments on this blog and quickly realized the task was more than I can handle.  Until I come up with a manageable system, I must resort to this general THANK YOU to all of the people who have posted comments, called, sent cards, prayed, written emails, raked leaves, and provided meals.  Even more have asked how they can help.  It means so much to us we get weepy thinking of the generosity of such wonderful people.  So, to all, we say...

Thank you

&

We love you!

Decisions, decisions...

I have an entourage!  Peeps.  Homies.  Roadies.  It's true.  I'll explain.

Since August it feels like I have spent more time at a medical facility than at home.  Often I'm not even asked to present my insurance card.  Instead, they say, "Any changes since yesterday?"  Protocol requires that I give my name and birthday for just about everything, a rule I support, and now I'm kind of expecting a ton of birthday cards when my big day rolls around.

During all that time spent at Camp Dracula and Club Med, and now at Chemo Bay (Mankato Clinic Infusion Center), we have not had one bad experience with any of the personnel, from medical staff to food service.  Not one!   It's almost uncomfortable, if it weren't so comforting, to be cared for in such a thorough and thoughtful way.  I am blown away by their kindness.  One might say it's their job to be that way.  Well, yes and no.  For example, an aide might come in to change the bedding, do it and leave.  That's her job.  She doesn't have to linger, smile, wonder what else she can do for you, then with a twinkle in her eye ask what flavor slushy she can bring you.  Simple example, but representative.  

One day during my last Club Med stay, a tiny sprite of a woman popped into my room, announcing that she was the hospital social worker.   After a brief moment of bewilderment on my part (weren't my kids too old to be taken from me?), the young woman, Josie, charmed her way into my heart.  Before long, I agreed to a meeting with her colleague, Lacey, who would be happy to tell me all about the Palliative Care Team (PCT) of which she was a member.  Well, OK!

It went down mostly like this:  We met Lacey, a soft-spoken, kind-hearted young woman, and before long we were hooked.  Well, of course I was interested in palliative care--who wouldn't be?  Advocacy, help with decision making, a shoulder, an ear--who could turn down an offer like that?  Lacey arranged a meeting with the rest of the team: Ellen, oncology nurse; Dr. Cory Ingram, Phyllis, nurse practitioner.  At that meeting, in addition to getting acquainted, we discussed a situation that had presented itself a couple of days earlier:  Should I explore a bone marrow transplant, an option I had unenthusiastically left open when I was first diagnosed? 

What happened was that Dr. Tin, the infectious disease specialist who had been consulting on my case (because of the fevers), dropped in on me--John was still there--at about 10:00 p.m.  We had not yet met Dr. Tin, but had been told by many that he was a good person to have in your corner.  So, this guy marches in, introduces himself and wastes no time barking, "Why aren't you going for a transplant?  You are healthy in all other respects and you are wasting time the longer you wait."  Who is this man?  My head was still wrapped around the possible effects of a powerful antibiotic, Vanco, which had been started that evening (Dr. Tin's orders).  Vanco's the drug that would make me itch and turn my skin red.  Oh, and it could damage my kidney.  I'm thinking, go away and don't come back until you've got a good idea.

By the time Dr. Tin left, both John and I felt blessed to have had the conversation.  He had helped us see that EXPLORING the option of a transplant was a no-brainer.  No harm in being evaluated--might get rejected anyway.

Then the PCT weighed in.  The next step would be to gather all of the principals, including my children, to ponder the pros and cons.  They were all there: the PCT; Dr. Kumar, my oncologist; Dr. Lal, the hospitalist who was my doc while I remained at Club Med; John, Christopher, Megan and Rebekah (by phone, which didn't work out so we talked later).  After a thoughtful discussion, I made my decision:  I would pursue the transplant option.  

We will head to Rochester on Nov.10 for the screening.  We were told we would know pretty quickly if I even qualify.  If I don't, well then, it's back to the status quo: Vidaza (chemo) and transfusions.  If I do, then I'm in it for the long haul.  It's a scary proposition, one I sometimes can't bear to think about, but one I am confident I can face, especially with the support of my family and friends.

My entourage?  If you've read this far into my long-winded entry, you have figured out that my peeps, homies and roadies are all of the players mentioned above.  How lucky I am to be so well cared for!

It's a Beautiful Day--Every day

 Saturday, October 29, 12:30 p.m.

Life is full of surprises, as "they" say.  I thought I'd be posting on this crazy blog like, well, like crazy.  Instead I've just been going crazy trying to keep infections and fevers at bay.  It has not gone according to the script I had carefully crafted in my head.  But today's a new day and a beautiful one at that.  So here I go...

I am home alone.  I know!  I'm thinking here's my chance.  Trouble is, I can't think of anything to do that wouldn't involve getting out of my pj's to do it.  I am so disappointed in myself.

Today is Ruby's 3rd birthday party.  John, Megan, and Megan's two kids, Kyle (7) and Eliza (almost 2) drove to Apple Valley to celebrate.  I decided to stay home because we felt it would be too risky to be among a group of people, especially young ones, so soon after a round of chemo when I am most vulnerable.  Rebekah set us up with Skype the last time she visited so the plan is to connect towards the end of the party so Grandma Kathy can wish Ruby Lu the happiest of birthdays.  Because I love her so, I will even clean up and wear fresh pajamas!

Ruby's birthday isn't actually until November 3 (her GOLDEN  birthday), but this turned out to be a good weekend to celebrate particularly since Halloween is the theme of the party.  It should be lots of fun -- I love seeing the kiddos in their costumes.  Rebekah has no doubt unleashed her creative impulses with the party decorations.  She always does such a good job.

Cora (4) and Ruby are both Little Mermaids this year -- different versions.  Kyle is going to be Indiana Jones and Eliza will be a colorful owl.  Megan scoured thrift stores searching for "authentic" Indy apparel which included a leather satchel, not an easy item to procure.  Can't wait to see the world adventurer when he and Eliza come to 1040 for their tricks and treats.

Eliza's owl costume was made by Megan, probably just this past week if she's at all like her mother.  If she finished it only last night, then I know for sure it's my good example she's following.  I don't think we EVER had our costumes ready until the evening before, or more likely, the day of the event for which they were needed (like a school parade).

When Megan was a kindergartner, we (probably me--I don't think I gave my kids much choice) decided she would be a crayon.  I found a piece of cardboard, shaped it as best I could into a cylinder (although the back edges overlapped and we used shoelaces to tie the cylinder together--easy to get into and out of), cut holes for her arms, painted it white (thinking about safety--more visible on a dark night--or maybe it was the only paint I had and it was too late to go to the store), glued a paper "point," with an opening for her adorable little face, on to the cylinder, and with black paint topped it all off with the official Crayola trademark logo and lettering.  Perfect!  And the paint was even dry for her to wear it to school the next day.

Halloween night Rebekah offered, or was enlisted, to take her little sis around the neighborhood to score some loot.  Usually John had that honor. Honor, hah!  It was a strategic move on his part--he always offered to carry their treat bags between houses--so he could steal from his kids while they blithely skipped to the next door.  On this night, though, John wanted to hand out the candy (I think he had found a scary mask to try out on our trick 'n' treaters) and I probably was cleaning up the guts and blood we'd had for supper (spaghetti) and was way happy to give our ten-year-old, dressed as a gypsy I think (that good old standby), the job of escorting Megan.

I'm a little fuzzy on the sequence of events, but I think one of our neighbors came to our door and said Megan was having some kind of a problem.  I recall that John quickly passed his door duties to me and hightailed it over to the neighbor's to assess the situation.  What he found was a white crayon on the ground trying desperately to get up while her older sister was nearly doubled over with laughter.  Poor Megan had fallen and she couldn't get up!

I'm not sure how long she had to endure such abject humiliation, but I'm pretty sure it was longer than it should have been.  When I reviewed the scenario from my vantage point at our front door, it looked liked Megan's father--her own father!-- and the neighbor had joined Rebekah in the frivolity.  I didn't worry too much, though, because I figured John would never want to face my wrath when the whole crayon debacle ended.  Sure enough, he rescued her and  they completed the rounds as a trio.

What had happened was that a huge design flaw had gone undetected.  Actually, Megan had faced an issue with the costume earlier in the day when the kindergarten class had to climb the risers at a program in the school auditorium.  She was unable to bend her knees because the cardboard covered them!  Of course, I didn't hear about this until well after the whole falling down incident or I might have made an adjustment.  So, there she lay, unable to bend her knees while her sister, too weak with laughter to be of help, watched her flail around like some upended albino turtle.  Don't bother telling me the obvious--I know the laces in the back could have been untied and Ms. White could have been freed a lot sooner.  Alas, no one but me knew the intricate workings of this child  trap.  Besides, the story is better as is.  And Megan's therapy is working.

Happy Halloween!

Edited on 11/10/11: I found a picture of me in my crayon costume. I don't think Mom will mind if I add it.  

I guess I had a few details wrong with regard to the construction of the costume.  Oh well, the outcome was the same.  My poor baby!

~Kathy 11/12/2011

Wednesday Evening 8:00

Today, the 3rd day of chemo, went much better than the 2nd dose.

 

Yesterday, after breaking a fever in the morning,  Kathy's temp went over 102 while getting infused in the p.m. so we stayed an extra 60-90 minutes and took advantage of some extra saline hydration. 

 

Seems like the chills, fever, sweats, nausea, and headaches show up when they feel like it.

 

Today, a headache and low-grade, short-lived fever were the most noticeable bumps.  We even went for a drive through the Kasota prairie just to enjoy the late afternoon October weather.

 

Hope all of you smelled a flower or two as well.

 

John

Tuesday, October 25

Hello Again.

Monday was a low fever day (99+ around noon) but Tylenol helped break it rather quickly.  Then the usual "sweats" followed.  We were a little late for the 1:30 chemo infusion, but it happened.  They checked blood and hemoglobin was 9.2 but platelets were low, so we went to the cancer center after the Vidaza and Kathy got her platelets boosted (for those of you less familiar with our health system, the Mankato Clinic and Mayo-Mankato Hospital are all on the same campus--we get the chemo at the clinic infusion center and the transfusions at the hospital cancer center).  Kathy got stronger as the day went on and we had a good evening.

Today started with the "sweats" during the night, fever at 99+ at 8:00 am, then Tylenol, then chills, then fever spike at 102+, then temp back down at 10:00 am.  We leave for chemo at 12:45, and it looks like a go right now.

I will try to be more consistent with my daily entries.

Enjoy each day.

John

I'm baaaack!

Dear family and friends,



Thank you so much  for all of the support you have given me and John while I've been on hiatus at Club Med, aka the hospital.  Your thoughts, prayers, good vibes and emanating love have sustained me and lifted me up during dark times when it all seemed futile.   And, so now here I am, fever free at the moment and able to actually focus on a few thoughts.



First, a shout out to my ghost writers!  THANK YOU!



I recently came across a poem I wrote in the '80s which actually seems more relevant in the present time.  It will never appear in an anthology, but it accurately describes my state of mind.

The Butterfly Dance

An old woman who looks like me

Is dancing the butterfly dance.

Flutter by, butterfly.

One of the great pleasures of my life is watching the elegant butterfly soar, glide, dip and dive among the coneflowers and black-eyed Susans, stopping to rest long enough to be oohed and aahed over. I feel compelled to offer encouragement as I think about the hard work that lies ahead for this wonder of nature. Safe journey, Bella! – shouldn't butterflies have names, too? – I hope to see your child next year!

Whimsy? Not entirely. There is a lot of similarity between the chronically ill human and the dancing butterfly. There are times, between fevers, when I must remind myself how important it is to restore my mind, body, and spirit so I am able to reach my destination (whatever that may be) knowing I twirled and whirled at least as hard as my hero, Ms. Bella Butterfly.

Update Tuesday, October 19 11:00 a.m.

Hello!

Kathy is still in the hospital, working on a 5th day without a fever. When they finish the course of Vanco, the antibiotic they are giving her, she will be discharged (Thursday or Friday).

 

We hope the chemo can resume on Monday.

 

Be Well.

 

JD

Update for Saturday, October 15

Hi! Megan here again. We just have a quick update today because it was a relatively uneventful day. At least it has been so far. I feel like I need to add the "so far" because we never know what it's going to be like five minutes from now.

Mom made it through the day (so far) with no fever. She also got a unit of blood and a bag of platelets. She had a little more energy today and even went for a walk with Dad around the hospital floor.

So that's about it for today. Keep your fingers crossed, knock on wood, sacrifice a small goat--whatever it takes so that Mom can have another good day tomorrow.

I'm just kidding about the goat. Any animal would work, really.

No, I'm kidding. Please don't hurt any animals on Mom's behalf.

Love,

Megan

Friday the 14th, 3:30 p.m.

Greetings Again.

 

Not much change to report.  Kathy had a good morning, but then the fever came, spiked, and departed.

 

They drew more blood in two places, so it's at least 2 more days in the hospital as they try to determine what it is that they are treating.

 

We can only hope.

 

Be well.

John

Thursday, 10/13/11 1:00

Of course, since Kathy's journey seems to be an endless series of detours, yesterday's post was, unfortunately, premature. 

 

I left my notes at the hospital, so the sequence is muddled, but the detour is a familiar one.

 

Early in the evening the chills started.  Soon the temp started to rise.  The blankets came off, ice packs were positioned, and the temp spiked somewhere between 104&105.  A Doctor ordered a different antibiotic but Kathy was hesitant because of the side effects.  It (Vacon for short) can trigger a redness or flushing of the skin, so it is referred to as Redman's whatever.  Unfortunately (I can type that word with, unfortunately, great dexterity) a good deal of itching, especially of the scalp, accompanies the flushing.  Kathy was also a bit weary of the reality she blames on no one--only trial and error strategies are available in a game with a fairly clear ending.  But after a healthy discussion between Kathy and her night nurse and the pharmacist (just two of the many, many wonderful people who provide remarkable care) is was clear that the new anti-biotic might be able to take out a Bug that was resistant to the antibiotics used so far.  Kathy said yes, did itch, and somewhere in the sequence the temp started to drop.

 

(I can't do justice to Kathy's phrasing of her acceptance of the new drug--in essence she shared with the nurse and pharmacist that her maiden name was Ruddy, which is only fitting for a person who is about to turn red.  Laughter released the tension in all of us)

 

I decided to get some supper (it was 10:30) and lock up the house and return for the night to keep her company in case she got an itch.  Oops.  Rephrase that.

 

Since Kathy is on the floor used for moms and newborns, there is a chair that converts to a bed.  As with all such dual purpose furniture, it came equipped with the requisite iron bar that was positioned perfectly to inflict pain across the middle of the back.  Fortunately, I could skrunch or skooch towards the end and slept fairly well until 4:40. 

 

I slept more at home and then went over with the paper.  We went through some of that and then had a very good meeting with Lacy, who coordinates palliative care for the hospital.

 

I thank all of you for your interest and support.  I will post again.

 

John

Wednesday, October 12

Hi, everyone. Megan here. I just talked to Dad, and he asked me to post a brief update.

There isn't much to report. Mom had a relatively uneventful day. All cultures remain negative, and so far no fever today. If the fever stays away, she will hopefully be discharged tomorrow. And hopefully she will be able to get more chemo at that point.

That's all I have to report. Thanks for keeping her in your thoughts and prayers.

Love,

Megan

Tuesday, Oct. 11

Treatment was scheduled for 10:00.  Yesterday went well, but we only had time for 1 unit of blood (another detour--antibody stuff). The second unit was scheduled for this afternoon.  May still happen tonight.

 

Dr. Kumar first needed to visit because the final culture for TB (taken Oct. 1 I believe) showed positive. However, an Infectious Disease Center follow-up determined around 2:35 that there was no TB.  Her journey is on a road that only has detours.

 

Kathy started Saline around 10:30 and then the anti-nausea bag, but chills were growing and a fever took over.  The Vidaza bag was stopped at 11:15, only 8 minutes finished out of a 30 minute bag.

 

The short of it is that the fever was strong and tenacious at by 12:30 Dr. Kumar said she would be best served in the hospital.  Kathy ended up in a private room around 3:30, wearing a mask again to keep her as germ-protected as possible. 

 

They can't pinpoint the cause of her current fever, and aren't sure that pneumonia was the culprit in the Sept. 25-Oct. 3 hospital stay.  So here we go again.

 

Kathy felt better by the time she got to the hospital room, especially compared to how she felt between 11 and 2:30-ish.

 

She lost a lot of fluids when she vomited in the early afternoon but is happy to have cups of ice chips.

 

Sometime in the midst of all this, Kathy wondered out loud: "Am I bringing this (fever) on myself?"  I blame the mask and her sickly state on the fact that I heard her words to be "My brain is on the shelf."   We had a good laugh at my confusion, and she graciously pointed out that I often say "What?" to something she says even when there is no mask or fever in sight.

 

Around 1:45, with a fever around 105 and a stomach still unpredictable, Kathy struck up a conversation with a lady across the room (most of the patients had long since finished) and found a lot of common ground (the lady was in brother Rob's grade school class).  An unusual time and place to make a new friend.

 

For now, visits won't work.  Even our 3 kids will stay away.  It's a germ thing.

And my ability to return phone calls seems to be diminishing from a high point of unreliable to a lower point of undoable. I plan to spend more time at the hospital.

 

However, I will try to post something every day and hope that will keep you in the loop. 

 

Be well.  Stay the course.

 

John

Monday, Oct. 10 11:00

Kathy is in the Mankato Clinic Infusion Center getting a 2 hour saline solution for dehydration issues (she vomited in the Dr.'s office) and a 15 minute anti-nausea solution (she was very weak this morning).  Then a 15-20 minute Vidaza injection.  If timing allows, she will move over to the Andreas Cancer Center for a transfusion (not sure if it's both platelets and blood or just the blood).  That's 4-5 hours, either today or tomorrow. 

 

I'm going back with a book or two so I can read something with her from time to time.

 

One day at a time.

 

John

Friday 9/30

Just a quick update.  In the quest to identify the source(s) of Kathy's infection,

the hospital doctor wanted to rule out TB (which evidently can show up with MDS).

 

So, yesterday she was given the Mantoux (sp?) shot and put into an isolation room.

We should get the results by Sunday morning.  Her temp has been normal since Wednesday

morning and other vital signs are ok.  No nausea or chills, but the night sweats still show up.

They may be caused by her cancer.

 

I can visit her, but I am supposed to wear a mask.

 

Seize this day.  JD

A Teeny-Tiny Bump in the Road

Hello. Megan here again.

After I talked to Mom last night, she got another fever. But the good news is that the doctors had it under control by 9:00, and she has been fever-free so far today. Still, the fever threw a wrench in her plans to possibly go home today. Keep your fingers crossed for tomorrow.

We'll keep you updated as best we can.

Love,

Megan

Pneumonia

Hi, everyone. Megan here. Dad asked if I could just go ahead and post an update tonight. So here it is.

I talked to Mom on the phone for a little while tonight. She said she was feeling much better. The blood bags were hooked up and she was getting yet another transfusion, but her fever has been gone since yesterday. The doctors have confirmed that she has pneumonia. She probably has been fighting it for quite some time. She had a bad cold about a month ago, and the pneumonia most likely stems from that cold. Whether or not that's the only infection wreaking havoc right now, the doctors aren't sure. She's on an all-purpose antibiotic that should knock everything out. She needs to get rid of the infection(s) completely before she can start the drug therapy. She thinks she might be able to go home tomorrow or Thursday.

Thanks everyone for all your support. It means a lot to all of us.

Love,

Megan

Another Update

Hello Again.

 

Just a quick update on a busy five days.

 

Thursday--We spent the whole day at Andreas Cancer Center.  The transfusion took longer than expected because of an antibody/antigen issue.

 

Friday--Same Day Surgery.  The port is in (hooray).  Friday evening, Kathy felt especially good.  We hoped to visit her Quilt Club's retreat in Sleepy Eye on Saturday.

 

Saturday--Gradually less energy through the day.  Sick in the night, sicker Sunday morning.  Fever and upset stomach and chills and nausea and general unsteadiness took turns or partnered to prevent us from doing anything.

 

Sunday Afternoon--Off to the ER (almost needed an ambulance to get her there)  The ER Doctor thought she needed to be in the hospital to stabilize her condition.  We agreed.  Too much doctoring for my skill level plus the possibility that pneumonia was the mayhem behind the scenes.

 

Sunday night--Kathy was feeling better.  The blood bags were being attached around 9:30 and she was in a dozing mood, so I headed for home (only 2 blocks away, fortunately).

 

Needless to say (but I made a living saying the needless, so I can't stop myself) the frequent transfusions require the words that my Irish wife said would only appear occasionally in her blog. (Kathy taught me those words and conducted review lessons whenever necessary. I have learned them very well, but won't use them in this venue until she says I can.) 

 

Thanks,

John

An Update from John

This is Kathy’s blog, but she asked me to fill in for the last few days.

I can’t match her style so I won’t try.

And I’ll start with a disclaimer.  If the following is confusing, it is because it is confusing.

Kathy was scheduled to get a port on Friday the 16^th and start chemo on Monday the 19^th.

But on Wednesday the 14^th Kathy identified the symptoms for a bladder infection and we went to Urgent Care and things took a while and by the end of the day the analysis did not confirm a bladder infection.

We went in early on Thursday the 15^th for the bloodwork (CBC—Complete Blood Count) because we were sure she would need a transfusion on that day before she could have the surgery.  

But the results were slower getting to us because usually the bloodwork was ordered by her oncologist but this time the surgeon was the primary Dr. and he was naturally checking her platelets (which were low) and…anyway, the transfusion was pushed to Friday the 16^th and the surgery moved to Monday the 19^th.

So on Friday we went to Andreas Cancer Center at 11:00 for blood and maybe platelets (it’s a bit of a blur) and finished up around 4ish.

But by Monday the 19^th Kathy knew the urine analysis would reveal that she did have a bladder infection.  It did.

She was given antibiotics and the surgery was moved to Friday the 23^rd.

But today (Tuesday the 20^th) she felt especially weak and unsteady and stayed on the couch most of the day.  Her temp got up to 102.6 and after talking to an oncologist nurse and an urgent care nurse who talked to the Dr. who treated her bladder infection the day before we headed to the ER around 4:30.  Four hours later, with a much emptier stomach but a broken fever (hooray), a few x-rays (no pneumonia—hooray) and another CBC (bloodwork—low hemoglobin—6.6—not good at all) we came home.

It is almost midnight.

I’ve been summoned to get some sleep.

To be continued.

Wednesday a.m.

Not much to add.  It may be a transfusion day.  If normal hemoglobin level is 12-14, 6.6 is below any acceptable level. 

John

PS  Throughout all these days, the people at the Mankato Clinic and the Mayo Clinic/Hospital have been working cheerfully and tirelessly to make the best of a bad situation.  The ripple effects of bad blood are rather daunting.  When the doors are off their hinges and the windows are broken and holes in the roof are widening it’s a challenge to deal with changes in the weather.  The staff is helped, of course, by Kathy.  The number of  times she says “Thank You” in one day is uncountable.  But she has never been one to take daily acts and expressions of kindness for granted.  I am trying to follow her example. 

Thank you for listening.

About Final Journeys or We're All in the Same Boat

I've been mulling over what I chose for the subject line when I extended an invitation to you to participate in my blog.  I used, "a bump in the road--an invitation to follow my final journey".  Now, I'm pretty sure you haven't gotten stuck on that little turn of phrase, maybe you didn't even read it, and if you did, you aren't losing any sleep over it.  It's just a subject line, for goodness sake!

OK, but I taught writing for a while and could possibly have attended one too many writers' workshops where the Famous Author at the podium answered the usual question, "To what do you attribute your success?" with the usual answer, "Rewrite, rewrite, rewrite!"  I took the advice way to heart and I find myself thinking about my writing in a very "Brokeback Mountain" way.  Think: "Word (sentence, phrase, paragraph, whatever), I can't quit you!"

So there I was, looking at the subject line, thinking, "That's not quite what I meant."  Because, I realized, we are all on a final journey.  All of us.  Every single one of us.  That's what life is: a final journey, unless you plan to freeze your head a la Ted Williams in an attempt at immortality.

There may be other interpretations.  If you are a faith-based individual, of whatever denomination, you might argue that there is everlasting life after death.  But, another spiritually-minded person might counter with the notion that even everlastingness has a finite feel to it.  A paradox?

Never mind, I'm going with the idea that birth is the beginning of the journey and that life (and death) is the final journey.  Could be wrong.  Maybe next month I'll have another idea.  

Years ago, someone once asked me what my philosophy of life was.  I said it was trying to figure out what my philosophy of life was.  Yegads, how convoluted can a person be?

So, there I was doing my mulling when an image flashed in my head.  Backstory...My beloved daughters, Rebekah and Megan (and their husbands, Paul and Troy, respectively) granted me and John the privilege of attending to the births of each grandchild.  First Kyle (2004), then Cora (2007), followed by Ruby (2008) and anchored by Eliza (2009).  I couldn't have been given a better gift in my whole lifetime than to see those precious babes come into the world.  I could have done without all the icky blood and placenta, but I digress.

My imagined scenario went like this:  As each baby slid through what I'll call the tube (I taught seventh grade Health so I know the correct terminology) and after everyone screamed,  "It's a boy!" or more often, "It's a girl!" we noticed a tag tied to the little piggy that goes wee-wee-wee  all the way home that read, You are invited to accompany me on my final journey.  In my mind's eye, we didn't turn the tag over, but maybe the flip side said, I made it this far; are you with me?

And then I replied, in my mind's eye (whatever the heck a mind's eye is), Yes, I'm with you, but please don't poop on me.

So, I guess what I'm trying to convey is that we truly are journeying together.  And it started whenever it was that we let each other into our lives, for which I am grateful beyond words.  Thank you.

But, since those little grandchildren aren't here messing with my head right now, I'll just come out and say it, Let's promise not to shit on each other ever again.  I'm with you, dude or dudette.

Kyle

Cora

Ruby

Eliza

Today was a good day--I even got some sewing done!  

Next entry will be about a remarkable young woman who shared a little of her life with me and, in particular, about the time she showed me what she had been doing all morning in a summer school class.  I wish I had photographed it!