12 days of Christmas

As you can tell, our blogging frequency has taken a dive with the holidays.  We've been busy playing Mexican trains, eating gourmet meals, and taking care of Wanda.  Over the past week, the whole family has been in town.  We rented an extra house in Nashville over the holidays, so we've been splitting time between the townhouse near the hospital and the other house.

Mom has settled into a nice routine.  She wakes up at 6, takes some nausea medicine, and goes back to bed.  At 7, she wakes up, takes more medicine, and gets ready for clinic.  Her breakfast usually consists of a fruit smoothie and an ensure.  When she gets to clinic (usually at 8 or 8:30), they take her blood and she waits for the nurse practitioner and doctor to see her.  After clinic, she returns home, takes a nap for around 2 hours, and then has lunch.  We then go for a walk of about 2-3 miles.  After the walk, we watch a movie or play games, eat dinner, and she gets to bed somewhere between 9 and 10.  This is her schedule, and hasn't deviated much in the past week.

Nothing has been eventful with her health.  There are three main markers in her daily blood tests that they check - platelets, hemacrit, and white blood cell count.  Her white blood cell count is 0.2, which is very low, but not unexpected.  Her platelet and hemacrit numbers have dropped, but not to the point that they do a platelet or blood transfusion, respectively.  Her platelet counts are actually in the normal range now, which may be good, may be bad, who knows.  The doctors don't seem to care.  They also regularly check her levels of cyclosporine.  They want to maintain the cyclosporine (immunosuppressant) levels between 300-400 to prevent out-of-control GVHD.  Her levels had stayed at 350 for the past few days, but yesterday they unexpectedly jumped to 692, an undesirably high level.  So, they had her skip 2 doses to get that under control.

That's about all on the stem cell front.  Mom's spirits are still high, even though she could do without the constant headache of varying degrees and her generally anemic appetite.  Emotionally, the transplant has been tough, because we are essentially waiting for the other shoe to drop.  GVHD could be serious, or it could be mild.  She could get an infection, or she could not.  Right now, we are happy that nothing of significance has happened and hopefully we will have many uneventful days to come.

Christmas in clinic.  Can you find the bling?

Callie & Wanda on the way to the clinic

Never a dull moment!

Today is Day 5 of my life after SCT. After several days of headaches and nausea, I am glad to report that today has offered a respite. I don't know where those two nasty fellows went or exactly why they decided to leave me alone, but, whatever the cause, I'll take it! I know they are hiding under the bed, but I'm eating and drinking until they decide to show their ugly faces again.

The days have fallen into a routine of going to the clinic for about three hours each morning, followed by lunch (when possible), a short nap, and a long walk around the neighborhood and beyond. Believe it or not, I have been able to take a three mile walk every day. Actually, during the extreme headache phase, I felt the best when I was walking outside!

Callie, Case, and Sophie have prepared extraordinary meals each night, including chicken noodle soup for the ailing eater. Friends in Chattanooga have kept Pat fed and watered in my absence (thank you, thank you, thank you), and Kit and Mike arrive tomorrow to add their culinary talents.

Remember the John Prine song about Christmas in Prison? No, no, this is not that bad, but my song will be Christmas in Clinic! I am excited about the BIG day on Saturday, but I have gotten my present already.

Thanks for all the notes, cards, and well wishes.

Breakfast, Lunch, Dinner and Dessert of Champions

I (Callie) thought mom summarized the days post-transplant pretty well when she told a nurse at the clinic today, "I know you told me this would be pretty terrible, but I'm not sure I believed you then. I believe you now."

She's doing really well in every area--all is 'normal' to 'good' in the clinic's assessment, but that doesn't mean she's actually feeling normal. We've spent the past few days getting used to the many pills she takes each day and finding out (the hard way) what the side effects are (headaches, nausea) and trying to adjust the schedule to minimize those side effects. Hopefully we're on the right track.

The up side to not feeling well is that she's not quite as envious as she normally would be at missing the holiday parties.

We got out for a 2-3 mile walk yesterday. An added bonus to her required mask is that it keeps her face warmer against the brisk weather we've been having. It's not quite cold enough for me to wear one myself...

She's keeping a smile on her face though. All your thoughts, e-mails, calls and prayers are very much appreciated.

Writing the new book

Mom came home from the hospital today, marking the start of the long journey towards recovery.  There are so many unknowns and potential missteps that she is feeling a bit anxious.  Here's a list of things that are making her feel that way:

• She is neutropenic right now, meaning that she has a very low number of neutrophils, which make up the majority of white blood cells.  Since she is neutropenic, she must be very careful about what she touches, what she breathes, what she eats, everything.  This is manageable, but is a departure from mom's normal 'if it won't kill you, it makes you stronger' approach to germs.
• Once engraftment begins (probably in 2 weeks), she'll start seeing the first bit of GVHD (graft-versus-host-disease).  This could be the elephant in the room, in that she could suffer mild GVHD and be done with it after 3 months to a year.  However, this could linger and be a chronic issue that will need to be managed.
• The number of drugs she's taking is daunting.  She'll be taking around 20-30 pills a day for the foreseeable future.

All that being said, mom is focusing on the positives.  Although her life may not be the same after the 100 days, she knows she'll still be the spunky, fun girl she's always been even though her lifestyle may need to be altered to manage any chronic GVHD issues.

A new (wo)man

Mom received her stem cells today at 1pm.  The transplant took about 36 minutes, so pretty quick.  As I had said before, the donor had the same blood type, which meant that they didn't need to premedicate with benadryl, steroids, and other drugs.  The stem cells came in two bags of reddish liquid and when the nurse was hooking them up, she commented about how cold the bags were, asking the nurse practitioner if they had been frozen (they hadn't).  We moved on and everything went smoothly.  That is, until mom needed to get up and use the bathroom.  When she left the comfort of the blankets, she started shivering uncontrollably, which was pretty scary to watch.  They piled blankets on her and continued to watch her vitals, making sure that nothing was spiking (nothing did).  This went on for about 5-10 minutes while the nurses got the drugs they thought she needed.  Within 5 seconds of receiving demoral, the shaking stopped and mom started feeling alright.  Of course, we found out that the first thing you do after you receive demoral is... vomit.  Time for more zofran IV.  So, now mom is relaxing with a smile on her face while she mumbles half-thoughts to us.  As far as I can tell, the nurses think that the cold blood is what caused her shivers, and that it will improve.  So, so far so good!

 Callie and Mom showing their emotions (Thanks Mandi!)

Receiving the stem cells in style

She already has the strength of a 22 year old

Apparently if you ask mom to 'look stoned' while she's on demoral, she'll look like a zombie

Daisy Row

We owe our positive-sounding subject line to one of our friends who thought for a while that mom would be undergoing chemo to prepare for 'daisy row' which in my mind sounds less apocalyptic than 'day zero.' So far things are coming up daisies. Mom is officially neutropenic, meaning her white blood count is lower than low and ready for the transfusion scheduled for 1:00 this afternoon.

The day has started off well- Case got to sleep in and get some rest while dad came over early, and I (Callie) got to bring over the hairdryer to make sure mom is looking at the top of her game for the big day. They dont have a hairdryer on the floor because so few people have hair. I felt a little guilty firing it up to be honest--I know people in adjoining rooms could hear it. But I got over it and she looks amazing! She's showing me up big time in her crossword puzzle pjs and her light up Christmas light necklace (thanks Annie).

I'm watching mom take pill after pill and shot after shot in preparation for the big show this afternoon. Thanks for all your notes, prayers and thoughts. We are praying things will continue going well.

Rarin' to go

Tomorrow (Friday) is the big day.  It's funny how when people hear 'transplant,' they immediately think surgery.  I'm trying to imagine a doctor performing a stem cell transplant surgically - I'm assuming it would look something like them cutting open your pelvis, scooping out some bone marrow, and then shoving in new bone marrow.  In this imaginary transplant, the marrow is a thick, chalky paste, like toothpaste, that is grayish in color.

That, of course, is not what happens.  The stem cell transplant is basically like a blood transfusion, which is  similar to receiving an IV drug.  The infusion of the new cells will take between 1 and 2 hours.  Many patients sleep through it.  I think it will be curious that once it's done, we'll just have to have faith that something is happening.  There won't be incision to look at and say "yup, that happened."  Nothin.  Not until about 2 weeks after the infusion will we see that anything is happening.  When her white blood cell count rises three days in a row, that's when we know the cells have 'engrafted' and that the donor's cells did their job.  Interesting stuff.

We got a little more information about the donor.  As we said before, he is 22 and has lived or is living abroad.  We found out today that he is also the same blood type (O+), which is another plus in mom's column, because that means that they don't have to do more processing on the harvested stem cells to make the transplant successful.  As a reminder, if you haven't added yourself to the stem cell registry, you should.  They will mail a kit to you that you send back to them for processing.  You, too, could be the Superman that swoops in to save someone's life by giving just 6 hours of your time in a chair, watching your blood go through a machine.  

Finally, the support crew has increased in size.  Dad and Callie got in tonight.  It's nice to have the company and extra support.  My beautiful wife will be arriving here on Saturday (I haven't seen her in 4 weeks!) and Kit & Mike will arrive on the 23rd.  We're all looking forward to the time together.

Rabbit-like?

Hopping along

It's 11:30am, and mom still hasn't started on her next round of thymoglobulin.  If anyone thought that getting injected with rabbit syrum would make you as happy as a rabbit, I'm sorry to say it's not the case.  Although mom woke up rather hoppy, she's not feeling so great now.  We walked 8 laps of this section of the hospital this morning -- 25 laps is a mile -- and she was in good spirits.  We then had breakfast, which mom actually ate a fair amount of.  She's been feeling pretty nauseous most of the morning, though - not a good feeling.

You may be asking what this thymoglobulin is and why it's given as a 'anti-rejection' drug.  Well, I found a pretty good description of the drug online.  I'm not a doctor, and the doctors out there can correct me, but it looks like thymoglobulin wipes out most all of the T-cells in your body.  Remember the T-cells?  I talked about them in an earlier post when I was talking about Gengraf.  The T-cells are the maestro of the immune system, so without them, you basically don't have a response to infection.  While Gengraf dampens the immune response, thymoglobulin wipes it out.  So, by tomorrow, mom will have little to no T-cells (due to thymo), little to no white blood cells (due to chemo), and the T-cells that are still around will be dampened (due to Gengraf).  That means that when she receives her new cells tomorrow, her body won't put up much of a fight.

Rabbit it is

We awoke early to get to the hospital at 7am.  We hurried up and got there at 7:30... to wait.  The bed wasn't ready.  Luckily, we only had to wait for an hour before going to the room, but by that time, mom wasn't the happiest camper.  I think she just wanted to get it over already.

Things moved slowly and the infusion didn't start until around 1 or 2 pm.  They had to run a skin test on her to see if she would have a serious reaction to the thymoglobulin, which she didn't.  They then premedicated her with benadryl & prednisone (steroids) before starting the infusion.  For the past 4-5 hours, she's been laying in bed getting an infusion of thymoglobulin.  We were lucky in that she didn't show any serious reaction to the infusion.  However, after about 3 hours, she started feeling pretty nauseous, so they gave her some more nausea medicine, and now she's sleeping soundly.  She should be done with the infusion around 7pm.  We'll do the same thing tomorrow, although the infusion will more than likely start earlier in the day.

The emotions have run the gamut today.  Anxiety at the beginning of the day, followed by anger/annoyance with how slow things were moving, then boredom since she was just laying in a bed receiving drugs, then the discomfort of nausea, and now beautiful sleep.

Thanks for everyone's support.  Mom has loved everyone's comments on the blog and emails that she has received.  It gives her something to do when she bores of talking to me, reading Ana Karenina or playing Spider Solitaire.

In front of our tree in the townhouse before leaving for the hospital

Her smile masks her displeasure with having to wait

All Aboard

As mom said, today was the last day of the outpatient chemo.  Tomorrow, she'll be inpatient until after the transplant.  We don't know how bad these next two days will be, but the nurses have prepared us for the worst.  They don't know if she'll have a reaction to the rabbit (or horse) derived drugs, and they don't know how severe the reaction will be.  The nurses say that she could have high blood pressure, chills, high fever, and/or hives.  We should know very soon after the infusion starts whether the next 2 days are going to be from hell or not.  Some people have suffered very mild reactions, whereas some (very few) end up in ICU.  The infusion will take between 4-6 hours, depending on how she's reacting.

This is also the first day so far that mom has felt more-than-minor effects of the chemotherapy.  We spent the last day of freedom for a month by visiting the wig store yet again, this time to get pictures of the wig options.  I've posted a poll on the right side of the blog, so please vote for which wig mom should get if/when her hair falls out.

Wish her luck!

Day -3

On Day -3, Case and I find ourselves once again in the outpatient chemo lab. This weekend we had it to ourselves, but on weekdays, it is a very busy place.
Yesterday I began getting two drugs, and while we are still enjoying time together, we are seeing the signs of working our way to the bottom. Bright and early tomorrow morning, I check into the hospital for two days of monitored chemo before DAY ZERO. Scary, huh? I think it's too late to turn back now (another song, but I'm not singing it for you right now), so full steam ahead.

Stepping it up

It's hard to believe that the transplant is in less than 4 days.  Hopefully we can keep our spirits up, but it will be hard to ignore the impending transplant.  Mom will be admitted to the hospital on Wednesday and remain there until Saturday at the earliest.

We spent a bit more time in the clinic today, since mom was receiving an infusion of Busulfan as well as the usual Fludarabine.  As I said in an earlier post, she had to start taking anti-seizure medicine to pre-medicate against a Busulfan-induced seizure.  Last night was the first night in a few days where mom got in a good night's sleep.  I had to wake her up at 10pm so she could take the final Diflucan pill and so I could take her temperature.  In order to do these two things, I had to wake her up 3 different times.  Once to tell her I was going to take her temperature.  Once (five seconds later) when I was ready to take her temperature.  Once (15 seconds later) when the thermometer started beeping and she didn't move at all.  Very amusing.

Tomorrow marks the beginning of immuno-suppression.  She will start taking Gengraf (cyclosporine), which dampens the effectiveness of T-cells in her body to reduce graft-versus-host disease (GVHD).  GVHD is caused by the donor's stem cells producing T-cells that incorrectly identify mom's skin, gut, or liver cells as foreign, resulting in a buildup of white blood cells that attack her tissues.  By minimizing the effectiveness of the T-cells, the immune response to the 'foreign' tissues is dampened, leading to milder reactions.  Of course, this also means that her immune response is dampened for real infections, so the doctors have to balance the desire to minimize GVHD with the need for her to be able to fight off infections.

Tomorrow is also the last day of outpatient chemo.  On Wednesday, mom will be admitted into the hospital to receive infusions of either Atgam (from horses) or Thymoglobulin (from rabbits).  These Anti-thymocyte Globulins (you know, ATGs) are used to reduce the chances of rejection of the donor cells.  She will be in the hospital for this because they want to monitor her, since the side effects of these infusions include high blood pressure, high fever, chills, and other similar things.

It's the Final Countdown

The countdown is on. Today is Day -5, counting down to Friday, December 17, the blast off, better known in the SCT world as DAY 0. Kit has a funny 80's song going through her head. The title is "It's the Final Countdown." Now the chorus is in my head, so I thought we would share it with you, too. You can sing along with us, if you dare, after watching the video below:

Enjoy, or maybe not!

Thanks for keeping me laughing with your posts and emails.

More of the same, with family

Kit got into Nashville on Friday night and Dad got here yesterday.  The last two days have been the same routine as the first two days.  They take blood, inject Zofran through the central line (anti-nausea), she takes Decadron (anti-nausea), and then they start her on a drip for an hour of fluids, then 30 minutes of Fludarabine, followed by another hour of fluids.  At some point, the doctor will come in and do a quick check on her.  She's done by around noon, central time.  Kit went with her today and yesterday, and dad stayed with her for 2 hours today.

Tomorrow is going to be a bit different, though.  We'll be at the clinic much longer.  On tomorrow and Tuesday, she'll be receiving two chemo drugs - Fludarabine and Busulfan.  As usual, the Fludarabine drip takes 30 minutes, but the Busulfan drip is spread over 3 hours.  One of the side effects of Busulfan could be seizures, so starting today, mom is taking Dilantin to pre-medicate against seizures.

It's been nice to have Kit and Dad here for the weekend.  All of us went on a walk around Nashville before retiring to the house due to rain.  Last night, I made a meal of kale, caramelized onions, and sweet potatoes to go with salmon that Kit prepared.  Every time I write about food on here, I ponder whether I am becoming my dad, who will tell me what he ate for dinner every time we talk on the phone.  I think I'm describing it because people may find it fun and interesting, but who knows, maybe my dad and I are the only ones that care.

Kit and Mom (note the snow)

Mom and Dad

A Match Made in Heaven

I keep forgetting to tell my family and friends about my "match made in heaven." He is twenty-two years old and has lived abroad, or may be currently living abroad. He is an American citizen, and the nurse intimated that Europe is the place where he has/is living. She seemed to think that a fun reunion in a desirable European location might be in my future. That sounds terrific, and I will be excited to have such an event to look forward to, but all I really want to know is:

• How much hair I will grow and where?
• Will I have the potential muscle tone of a 22 year old?
• Will this tired face tighten up with the blood of a 22 year old being produced in the marrow of my bones?
• How much testosterone can a mature woman enjoy?

Does anyone remember that Carly Simon song with the lyric "chills my bone right to the mar-a-row?"

Seriously, I am so impressed that a 22 year old young man would be willing to donate his time and stem cells to a mature woman such as me. Whoever he is and wherever he is, he is my Hero, right up there next to my fabulous family and friends! Today, though, I am praying especially for HIM!

Carbon Copy

Today was a lot like yesterday.  Mom received more chemotherapy, had to wear her mask, and still feels moderately normal.  Sensing that her time to shop is running out, we went on a whirlwind tour of a wig shop, Sally's Beauty Supply, Publix, Sam's, and Lowes.  You gotta do what you gotta do, right?  The surprising part of it all is that we actually bought stuff at most of these places.  I'm so used to shopping with mom and browsing that I just didn't know what to do with myself.  Sorry, no pictures of the wigs she tried on, but I can tell you that she did look good in the ones she tried on.

Mom receiving chemo.  Shirt says "It's a wanderful life."

While last night we had a college-esque meal of tortellini, brocoli, and squash, tonight I took a tip from a friend and made something roughly based on this recipe, only I used butternut squash and onions instead of acorn squash.  Can anyone spot my amateur mistake in the photo?

Thanks for all the emails and comments that people have been sending.  Mom and I have both enjoyed reading them while sitting in the clinic.

Yuuuum

Who's That Lady?

Chemo started today, day -8.  First, the nurses flushed the catheter with saline and heparin.  They then started a drip of fluids before putting in the chemo drug, Fludarabine.  The catheter means that they don't have to insert an IV every day, but I'm not sure if mom thinks that the annoyance of the catheter is worth it yet.  While we were sitting, a man who had his stem cell transplant 3 years prior was in the clinic and we talked to for a while.  Although he has had some residual graft versus host disease issues, he appreciated the quality of life and curative effect of the transplant.  In all, mom sat in the chair at the clinic for about 3 hours - mom on her iPad and me on my Kindle.  Aren't we cool?

This also marks the beginning of all the restrictions.  Although her white blood cell counts aren't going to be dangerously low for a few more days, they want to start her getting used to all the restrictions.  So, this means that she needs to wear a mask everywhere except home, car, and clinic.  She does not like the mask and does not enjoy her son telling her to wear her mask, but she's making do.  The good news is that the mask did not stop her from visiting her favorite dress shop in Nashville, Scarlet Begonia.  We walked 3 miles in total in order to shop there.

Mom faces the world incognito

Trifusion Catheter

Today, mom had her Hickman Trifusion catheter  installed in her chest.  We woke up early so that we could get to the radiology department by 7 for her 8 o'clock appointment.  Mom was none too pleased that after getting onto the hospital bed, she had to wait for 2.5 hours until the operating room cleared.

You may be asking yourself what a Hickman catheter is, and why did she go to radiology.  Well, the catheter goes into one of her central veins in her chest.  With this, she will be able to receive IVs and (I believe) chemotherapy without having to get an IV line installed every day.  Infection of these lines is, unfortunately, very common, so the dressing is changed every day or every other day in a sterile environment by the nursing staff.  The catheter is installed in the radiology department because they use ultrasound to locate the vein that they are aiming for, prior to making an incision.  Apparently, these used to be installed in the dark, where the doctor's would make their best (and I'm sure well educated) guess as to where the vein would be.  Scary, huh?

Mom was able to walk out of the hospital and we walked back to our townhouse, before heading to Wal-Mart for some more essentials.  The catheter wasn't bothering her much until we got to Wal-Mart, where she became aware of it again - either that, or the seat belt was irritating it.  The pain didn't seem that bad, and was to be expected according to the nurse, but it was a reminder to mom that things aren't normal, and also that things are going to get worse.  We ended our day by watching Up and grabbing a bite to eat at a nearby restaurant.  Chemo starts tomorrow.

Breakfast of Champions

Nashville

We arrived into Nashville last night at around 11 Nashville time.  It is freezing here -- the thermometer says 25 degrees.  Yeesh!

The townhouse where mom will be staying for the next 110 days is actually pretty nice.  It's two stories and has two bedrooms.  We didn't do much last night, aside from get all of our stuff inside and set up my computer.

This morning I did about 2 hours of work before we made our way to the hospital - mom for some tests, me for caregiver training.  We'd watched the caregiving dvd before, so nothing was really new, but it was interesting to see what other people are going through, and how they're coping.  There were 3 other donor supporting groups in the room.  One had MDS that had turned into AML and had a related donor,  one had lymphoma and had a 10/10 unrelated match, and one had ALL (not sure if they said their donor status).  None of them looked like they were doing that well, but they all seemed optimistic about their chances.

After the training, we came back to the townhouse before heading to lunch at the San Antonio Taco Company.  We enjoyed one of the last meals out that mom will have for a while.  After lunch, mom was proud to guide me to a Target and Publix that were a good ways away, based solely on her memory from when she lived in Nashville in the early to mid 70s.  Pretty impressive.

I just finished cooking my first of many meals for mom.  Chicken, brocoli, green pepper, onion, soy sauce, and rice.  Yum.  I'm looking for recipe ideas, so please post some in the comments.

Mom in her Christmas gift - a zebra print Snuggie!