Mother’s Day: T+10

It’s T+10 today.  The doctor told my Mom she’s finishing the “first bad third” of this transplant journey, and she’ll soon enter the “second bad third”, which is slightly less bad.  The final third is recovery, but in this situation it’s really best to take things one day at a time.

I’m glad we’ve moved on to math metaphors.  Previously we inhabited a world filled with the kind of clichés that would have driven your freshman English comp professor around the bend:  “This rocket has launched,” “It gets worse before it gets better,” “there’s no going back,” “it’s darkest before dawn,” etc.

A good day: T+7

Monday and Tuesday of this past week were Mom’s final days of Cytoxan.  They were almost as dreadful as the initial rounds, however, they did control the nausea and vomiting in a way they didn’t the first time.  Now that the Cytoxan is done, she’s on a host of medications to help the transplant itself.  Antibiotics, antivirals, antifungals.  She gets transfusions of red blood cells and platelets as needed.  The chemo has almost completely killed her own marrow—her blood counts go down every day.  Sometime between T+14 and T+21, we’re going to see the counts go up…IF THIS WORKED…that will be MY bone marrow doing it’s thing.  I asked a nurse a lot of questions about what to look for—she got concerned and said to me, “I want you to remember, sometimes this doesn’t work, and you are not responsible”.

Of course it will work.  And of course I’m responsible.  OK, rationally, I’m not—the nurse is right; but I think it’s impossible not to feel invested in this.  I guess that’s why anonymous donors are not invited to meet their recipient until a year after the transplant has passed.

We’ve had some good days and some bad days.  One good day my Dad and I spent 4 hours with her and we talked about lots of good times and the day flew by.  We’ve had some bad days where Mom is in so much pain she can’t even move her head from the pillow.  The situation changes from hour to hour.  Dad and I find our moods are influenced by how well she feels.  If she’s good, we’re up, if she’s bad, we’re down.  One thing remains though—the conviction that she’s made the right choice.  In spite of the expected, and extremely difficult physical side effects of this procedure, SHE IS DOING IT.  She made it through the bad chemo—ten times stronger than what they give most cancer patients.  She is free from infection (knock on wood, throw salt, etc).

Each day the staff marks where Mom is in the process and what her counts are

Mom’s biggest challenge right now has the lovely name “mucositis”.  Those are sores that appear in all the mucous membranes (think about that for a second.  Yep.  ALL)  after the kind of chemo she’s had.  They won’t go away until her body can fight them off, so they’re going to be there a while.  They make eating nearly impossible.   They are giving her a strong pain-killer for that.  If it becomes unbearable, they will give her a pain pump.

Mom and Dad on T+7

As for me, I’ve been amazed at how tired I am.  The discharge sheet did say “2-4 weeks” until I felt better, but I’m tough!  They didn’t mean me!  Ha!  I’ve been sleeping 10 hours a night and taking 3 hour naps every afternoon.  And I still hobble around.  I’m heading back to work tomorrow—hopefully they won’t find me curled up under my desk by 9th mod.  And if they do find me, maybe they’ll just slip me a pillow.

Did you know that transplant patients can’t have live flowers?  Actually, they can’t garden for the duration—there are lots of nasty fungus in dirt and mulch.  I made my Mom some tissue paper roses for Mother’s Day and my son drew some pictures.  He chose the subject matter:  “Grandpa with one leg eaten by a crocodile” (yet he’s smiling…Dad says it’s because he still has the other leg) and “Grammy sticking her tongue out” (sort of appropriate).

 

 

Posted in May 2012, Uncategorized | 2 Comments

From the Trenches: Day T+2, Update from Kathy

I’ve been here eleven days.  It seems like a month.  I am entrenched into the routine of the ward now, and have my daily rituals, based on what times vitals are taken, blood, doctors’ rounds, etc.  There is no interaction between patients, all doors to rooms are closed.  When some of us do our laps in the hall pulling along our IV poles, it is basically eyes straight ahead with maybe a nod of hello.  I’ve begun to think that everyone undergoing this transplant process is so focused and into themselves, that they cannot break that pattern, even for a brief chat.

Everyone else is very chatty, and you are never left alone too long.  I am constantly being checked on and asked if there is anything I need.  There is a pantry down the hall stocked with sodas, popsicles, Ensure products, Campbell soups and lots of crushed ice and water.  When the appetite is bad, I do take advantage of this pantry.  There is also a snack cart that comes around once a day.  Everything is done wearing a mask and using the antiseptic hand sanitizer all the time.  I have never seen so many boxes of purple gloves.

Larry and Kellie have been the only visitors so far, because we have been going through a very busy chemo-filled several days.  I get the last two days of the dreaded Cytoxan chemo Monday and Tuesday.  Even the name sounds, well, toxic.  My blood counts will eventually basically drop to zero before Kellie’s takes over.  This could take up to three weeks.  They post the blood counts every morning on a board in my room.  My rebirth day was May 4, 2012, so I will be celebrating my birthdays on that date from then on.  Earlier presents.  Yeah!

I have a lot of electronic devices with me and I do switch off when I feel good.  I am into reading a novel about Ireland called The Yellow House, but at times I can’t concentrate too well.  Chemo brain is real.  I’ll spare you the details about the other nasty side effects I’m having.  Use your imagination.  Kellie brought me a 500 piece puzzle and I have it set up on my table near the big window.  It’s a great way to pass the time.  People come in just to see how much more I’ve done.

Lonnie and Michael are holding down the fort at home (Kellie is home now recuperating).  Lonnie promised me some  homemade chocolate chip cookies when I’m ready.  Michael and Grammy SKYPE from time to time, so that makes things easier.  Larry is so busy trying to do so much, and I know he is very tired at times.  But just to sit this afternoon with him and watch a ball game is heaven.

I am hanging in there.  As the doctor put it the other day, “the shuttle is launched, there is no turning back now”.  It’s not a walk in Disney World, but it’s doable.  He has a lot of phrases like that.  I am thinking about all the paintings I want to create when I come home, but that won’t be until at the very least a year after discharge.  They say it takes that long to get full strength.  The mantra is one day at a time.  Don’t look too far ahead.

Once again, thanks everyone for all the prayers, support and phone calls, cards and e-mails.  I am riding on all of your wings.  I am truly blessed.

Posted in May 2012, Uncategorized | 1 Comment

Day Zero–Let the Miracle Begin! Update by Kellie

Yesterday was Day Zero, a very special day in the world of bone marrow transplant patients.  It’s considered a new birthday of sorts, and certainly a rebirth, hopefully into health.  Yesterday my Mom received my bone marrow, and now those amazing cells are finding where in her body they “know” to go.  If all is successful, her blood type (A+) will become my blood type (O+), but most importantly if all is successful she will have a shot at a longer life.

The day began for me at 3:45 am, since Hopkins told me to be in the surgical center by 5:30 am.  My Dad drove me down and Lon stayed home to watch Michael.  When I arrived at Hopkins it turns out there was a mix-up, so I didn’t get in to surgery until almost 10am.  In spite of the snafu, I have nothing but praise for the staff at Hopkins– I’ve been in a few hospitals here and there, and Hopkins excels at professional courtesy.

I met with the anesthesiologist to discuss pain management during the procedure.   There are two ways they can do it: 1) a spinal block and something to make you relax or 2) general anesthesia.   Up until my discussion with the doctor I had imagined I would pick the spinal.  I have an unreasoning fear of general– it makes me sick afterward and I’m freaked out by the mere mention of “death” (however remote) as a side effect.  But when she described the spinal to me, I thought better of it– I would be aware of what was happening, it might take as long as 4 hours, and sometimes it would feel difficult to breathe (because I’d be propped on my side and my airway would be in a funny position).  As to what would be happening?  4 incisions in my lower back, to allow entry for multiple long needle sticks into my hip bones (about 16).  General it is then!

So, no makeup, questionable hair, and blind as a bat (no contacts) they wheeled me into the OR where I met Dr. Matsui for all of a minute.  I got a quick, blurry look around, and saw I would be on a rather cushy looking memory foam mattress, propped between two large silicon “sleep positioners” (like for babies) in the unfortunate color of blood red.  Then, one of the doctors asked if I was nervous, and I said I was, and they gave me something for that….and I woke up in the recovery room.

And…ouch!  Who knew “lower back” was a euphemism for “we’ll suck it out of your butt” and “discomfort” meant it will feel like you decided to use a thigh press at the gym ALL DAY set on 500lbs?  So, yes, it hurts, BUT, it is a totally manageable and almost comical (if you could see how I’m walking today) pain.  Having endured labor and a kidney stone, this is doable.  It’s localized, and narcotics are my friend.

I spent 3 hours in recovery with my Dad at my side (when he wasn’t trying to finagle one of the PACU recliners for Mom’s room– the chair in her room is not comfortable).  Here are some blurry pictures.  I forgot my camera and had to depend on my phone for pictures.

This is me, on some nice drugs…

 

This is Dad, between recliner negotiations….

Recovery involved sucking down 5 cups of water and/or pepsi, and getting my pain meds adjusted until I was able to walk.  At about 2:30pm, I asked them to wheel me upstairs, to see my Mom.

Mom was going nuts all morning, worrying about me, but I’m happy to tell you, she’s back in her real clothes, she’s eating again, and she looks great.  Her’s a shot of her:

By the time I got upstairs, she had been receiving my marrow through her port.  They brought up what turned out to be a two-liter bag, and then (so as not to damage the cells) they allow gravity to do it’s work.  The drip took from 1:30pm until about 6pm.  I took a blurry picture of the bag, and it doesn’t do it justice.  My marrow was a beautiful cherry color, and looked nice and healthy.  It actually received compliments from the nursing staff.

Mom felt no side effects during the infusion, but did develop a low fever later yesterday evening (which is normal).

Now is the part where I sound a little kooky, but I will tell you once in the room I had a chat with my bone marrow and with Mom’s body (hey, if they say the marrow “knows” where to go in the body, maybe it pays attention to other stuff.  Isn’t mitochondrial DNA a whole universe unto itself?  It was worth a shot).  I reminded both parties that 41 years ago they had shared a lymphatic system, and that I was not a stranger–I told my marrow to burrow in, and Mom’s body to REMEMBER ME and welcome me back.

This whole experience has been awesome and humbling.  I am so grateful to be able to help my Mom and I hope with all of my being that this works.  I am humbled to know after all the physicals I have been through over the last few weeks that I am absolutely healthy.  THAT is a gift not to squander.  Consequently, since the only thing “wrong” with me is that I’m an overweight stress eater, I’ve started a new lifestyle change (can’t say diet) called “Your Mom is Going through Hell, Certainly You can Stop Stuffing Your Face”.  So far I’ve lost 6 lbs.  I owe it to MY son to be as healthy as I can.  Some things are out of our control, but I’ve made a vow to do what I can with what I can control.

My friend Ilyse sent me a beautiful prayer that was said for my Mom at her temple.  I’m going to close today’s entry with it:

May the One who blessed our ancestors — Patriarchs Abraham, Isaac, and Jacob; Matriarchs Sarah, Rebecca, Rachel, and Leah — bless and heal Kathy. May the Holy Blessed One overflow with compassion upon her, to restore her, to heal her, to strengthen her, to enliven her. The One will send her, speedily, a complete healing — healing of the soul and healing of the body — along with all the ill, among the people of Israel and all humankind, soon, speedily, without delay, and let us all say: Amen!

 

 

Posted in May 2012, Uncategorized | 6 Comments

Cytoxan: Update by Kellie, May 1

Cytoxin is pretty nasty stuff.

My Mom likes to look nice, and she bought a whole new wardrobe of track suits, button front tops and pajamas to wear at the hospital.  You know things are bad when she abandons them all for a hospital gown.

They started preparing her for the Cytoxan at 6am on Monday.  Treatment began at 10am.  They side effects were immediate and severe.  Her face turned bright red and she experienced burning in her sinuses and bronchial passages.  She spent the entire day vomiting.  They did an EKG just to make sure her chest pain was not heart- related.  It wasn’t.   Turns out they had forgotten to give her acid reflux medication for the past 4 days (which she takes regularly) and once the vomiting started, things got out of hand quickly.  They countered the redness and burning with protonix and benedryl, gave her more zofran and a dose of the pain killer delaudid for fun.

No fun was had.  She couldn’t manage to talk on the phone with anyone, but my Dad was with her all day.

I spoke with her at 8:30 AM this morning (Tuesday), and she was preparing for the next round.  They are giving her benadryl, protonix, zofran and dilauded BEFORE they start the chemo this time, rather than waiting to see what reaction she has (um, hello?  What a great idea…).  She has 3 more days of Cytoxan– today, and next Monday and Tuesday

My Dad stayed home today and played with Michael for the first time since Tuesday.  It did them both good.

I’m glad she gets a “break” from the chemo starting tomorrow.

We knew it wouldn’t be a picnic.  Still wish it could be easier on her.

 

Posted in May 2012, Uncategorized | 1 Comment

Kellie’s Update, Sunday April 29

Mom was admitted to Hopkins on Thursday.  It was really a comedy of errors, and the staff apologized profusely.  She was scheduled to be admitted at noon, but her room wasn’t ready until nearly 5pm.  She hadn’t slept any the night before, being anxious about the day, so she wasn’t having a good time of it.  Once in the room, she discovered the TV didn’t work, and neither did the phone (it seemed), so that added to chaos.  The first night in, they start the chemo right away and take your blood every hour (to see how your body is metabolizing the drugs), so she had no opportunity to sleep then either.

I expected on Friday she would be pretty furious, but she sounded positively upbeat. 26 laps around her circular ward equals 1 mile, and she had already walked 3 miles!  She did not sleep again on Friday night, but was still amazingly peppy when I went to see her on Saturday.  She walked 3 miles on Saturday as well.  It turns out that the chemo or the anti-nausea drugs were affecting her as a stimulant (not typical).  Saturday night they gave her a dose of Ambien, and she was able to get 6 consecutive hours of sleep.

Her room is spacious, but I’ll bet by the end of this, it feels like a closet.  The TV is fixed–it’s a 19 inch perched precariously on the top of a wardrobe.  The phone does work, but to call out you have to set up a calling card.  Every staff member we’ve met so far has been very friendly and helpful.  I was able to spend about 2 hours visiting with her on Saturday.

My Dad came down with a cold on Friday, so he hasn’t been able to visit her since the day she was admitted.  They say he can see her on Monday, if he wears a mask.  I didn’t want to catch his cold and possibly delay my end of the transplant, so I haven’t seen him either.  Instead, we exchanged things to take to Mom in the garage, waved at each other at 20 feet, and have chatted on the phone.

Today Mom has been hit by the nausea and she hasn’t been able to eat.  Tomorrow the Cytoxan starts, and that is the one that has the really hard hitting side effects.  She will be on that Monday and Tuesday, and then she will get a break.  The protocol calls for 5 days of chemo, then the transplant, then 2 more days of Cytoxan.

Posted in April 2012 | Leave a comment

Kathy’s Message to Our Family, April 24, 2012

My family and I have had a wonderful weekend visiting with family who are giving us much love and support. Larry’s brother, Jerry, flew up from Atlanta to be with us a few days, and we are so grateful.

The previous three weeks consisted of very rigorous testing and giving enough blood between Kellie and I to float a cruise ship. Yesterday we
met with the head research oncologist at Johns Hopkins to get the results of all those tests and to sign consent forms for the transplant. The great news is that I apparently aced all the tests, and the doctor told us that even though my chronological age is 64, that I have the physiology of someone who is forty years old. Well, I laughed out loud at that statement, thinking that he was just being flattering or trying to make me feel good. But he assured me that he was very serious. Apparently I am in great physical condition in spite of the leukemia, and that is a big plus for me.

And so after all of this, everything will now proceed forward. He told us that all the data shows that the time is right and it couldn’t be a more perfect time to do this. I will be in a clinical trial of 300 people across the U.S. receiving half match transplants. Hopkins has been doing this with great success for several years, but other hospitals around the country are just really starting. I gave permission for them to monitor me closely for the next few years and to share my data with other research hospitals, including the National Institutes of Health, so that others might benefit from anything they may learn from my
disease and my transplant. My leukemia is SO rare that I feel it’s necessary for them to find out as much as they can from me.

Tomorrow I will get the catheter implanted into my chest, and on Thursday I will be admitted to Hopkins. I packed two suitcases this morning; One for clothes and a smaller one with all the
electronics, IPad, Nook, MP3 player, etc. I’m also taking a sketchbook and watercolor pencils. I won’t be able to have any toxic materials
like oil paints. Hopefully I will have good days when I feel like doing things. I know there will be times when I’ll sleep a lot and won’t feel so well, but others have told me that keeping busy is
therapeutic. I’ve also been told that exercise is very important when I’m in the transplant ward, and doing laps around the halls with my mask on
and pulling my IV pole will definitely be helpful.

An art friend of mine sent me some very interesting information on “guided imagery” and
I plan to use that to get through some of the hard stuff. It’s similar to meditation, but can be modified for cancer patients to help speed up
healing and help reduce pain and nausea. It’s been proven that it works. I have been practicing while listening to some of my favorite soothing music. And thank you Anna Pat (in New Mexico) for the art websites info. I will definitely be checking them out.

Kellie seems to be holding up okay, and she will be gearing up for her part in all this soon. The approximate date for her bone marrow to be
taken is May 5. She is a trooper and I am so blessed to have her.

We have set up SKYPE on our computers so that maybe we can get that going when I’m in the hospital so our little Michael can see his Grammy
from time to time. We have tried to prepare him for this, but it’s hard for the little guy to realize how long this will take. I will certainly lose my hair and have bought a wig and three hats. Michael calls my wig “Grammy’s other hair”. I even let him try it on and he proceeded to run around my house laughing hysterically. It was a sight to see.

I am as ready as anyone can be for this and I am focused like a laser beam on making it through. With all the prayers and support I have
received from family and friends, I feel so strong physically and mentally. As they used to say at NASA, all systems are go. The next update you’ll get will be from my hospital room.

I love you all, and Larry, Kellie, Lonnie and Michael send their love too.
Posted in April 2012 | Leave a comment