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