Saturday, November 30, 2013

T7

Today was much like yesterday in that we walked to the clinic and back in the chilly weather.  No critical news about the lab report so we are just back at the apartment giving hydration.   Terry is doing fine, though many of those obnoxious, irritating, and even painful symptoms are still hanging around.

We did take the elevator up to the room today instead of using the stairs so we saw this lovely cheerful sight in the PGH lobby.



It is beginning to look a lot like Christmas!

Oh! I completed one puzzle -



Looks good huh!

PS - We had a power outage for about 2 or 3 seconds.  Not long enough to even call it a black out, but it happened sometime between 4 and 4:30pm.  Fun to experience! 

Friday, November 29, 2013

T6

We walked both ways to the clinic again today and though it was chilly it was good to walk two days in a row.   We are happy that Terry feels good enough to walk.   We had lab work and a visit with the nurse, and then waited around for lab results.  Nothing new.

When we got home from the clinic we decided to check our mail box.  What a nice surprise ...
We had a note telling us that we had three packages in the office, so we stopped at the office to pick them up thinking that they were packages I'd ordered trying to get ready for Christmas. 

It was so fun to open the packages, especially since they were surprise boxes.

This first package was from Larsons.  Thank you!  It was just what we needed.  I had just mentioned last night that I should go get a puzzle from the lobby, but I didn't want to start one that didn't have all of the pieces again.



The second box contained so much love and fun from Gregory, Adena, Brayden, Tawny, Ethan, and Maddie. We will enjoy everything.  Thank You!


It's hard to see it all in the photo but it was filled with letters, pictures, hands and arms hugs, pumpkin bread, snicker doodles, pomegranates, Jolly Ranchers, m&ms, caramel apple suckers, a puzzle, a book, word search, sudoku book, and a puzzle.  Just what the doctor ordered.  Thank you so much.  We'll enjoy it all.

Now, the third box was ..., well, I can't say, because it was a box of things I'd ordered for Christmas, so I cannot tell what it was.  ;)  But, I looked in it and I am so excited about it.  It is perfect.  I can hardly wait to give them away. 

So, this Thanksgiving weekend is beginning to look a lot like Christmas.

:)  I've already started one of the puzzles.

Thursday, November 28, 2013

Happy Thanksgiving!

This was definitely a unique Thanksgiving for us. 

We started with a somewhat lazy morning, just putting a chicken (instead of a Turkey, because we didn't want so much turkey left over) in the oven and going to blood draw.

There were not very many people in the clinic today - even fewer than Saturdays and Sundays.  That's good!  We hope everyone else was off having a wonderful holiday.

The shuttle didn't run today so we walked both ways today - first time walking both ways since transplant, so we are happy that it was do-able.  We even took the stairs here at the PGH too.  That's good!  Terry is feeling okay.  He is always under the influence of nausea medicine so he is doing better that way, but still spends most of his day resting.

It was a foggy day, so foggy that we couldn't see the Space Needle like we normally can. The air was chilly, but not terrible.  It was really a nice walk and it made us feel good to be outside and strong enough to make the walk both ways.  That's good! 

We see some beautiful blossoms on our walk.  The beauties of nature always make me happy.  And these last few blossoms hanging on this fall are very beautiful.  I'm so glad they were there today. It made us happy.  That's good!



 
This next plant is lovely for fall.  I admire them every time I walk past them.  If I could have put fresh flowers or plants on the table today I would have used some of these.  I need to find out what they are and see if I can grow them at home so I can use them another year, and other years after that.
They are a prettier than this photo shows, and there is another group of them that is larger and quite lovely.


We are happy to be together today, but we miss our family.  Surely we would eventually have a Thanksgiving with just the two of us when all of our children are married and off to their other side of the family, but that will be many years down the road.  This seems a bit early for us.  I guess we are practicing for it so we can be ready when it comes more often. 

We heard a lady in the clinic today talking about their family gathering.  They invite all of his side of the family and all of her side of the family.  We don't know how many children they have, but we did hear that it is a small group when everyone is together.  "It's a nice small group!" is what she said.  Then she expounded - her husband just has his mother and a sister, and she had just her mother and two aunts.  They had more together than we had here this year, but they have fewer than we have with just our children.  I really don't know that kind of life.  Never had it.   And, for me, That's good!


There were many new and different experiences as I prepared the food today. 
- Chicken instead of turkey was the first.
- Preparing the meal in small amounts was really odd.
- I made the smallest amount of Lime Pear Delight I've ever made before (1/4 recipe) and there wasn't enough pear and cream cheese in the blender to make this blender work, so I added the whipping cream to it to whip it in the blender.  I was concerned if it would work, but it did.
- Deciding what to make and if it would be something Terry would be able to eat without getting nauseous was a big concern, especially since there is such a combination of things on the plate.
- Using only 2 sauce pans to cook 5 different foods was challenging, still trying to keep the first things warm by the time the last things got done.
- No pretty bowls ..., (the word pretty didn't even need to be there) ...,  trying to figure out what to serve the food in was interesting.  Disposable is what I have, so that is what I used.
- No décor!  Just the table!
- No rolls because I just couldn't fit it into my hectic Wednesday.
- No pies because I wasn't going to buy a pie (cause they just aren't good tasting to us) and I wasn't able to make one yesterday and the oven was full today until after the chicken was done and then it was just not something we thought we needed to do.  Maybe another day.

Other than that our meal was similar to the traditional Thanksgiving meal we usually have. Here is how it looked.


Not beautiful, but it tasted good and Terry was able to have some of everything.  That's good!  (Well, he did choose to not have the cranberry sauce.)  He was feeling well enough to eat a good meal, and That's good!

All in all ..., it's been a good day!  We hope yours was too! 

Happy Thanksgiving!



Wednesday, November 27, 2013

T4

It's day 4 after transplant day and things are slow, but steady.  Terry has not thrown up today so that is encouraging.  He still has all the other symptoms that I've mentioned before, so I'll not list them again.  They are part of the process and things we are to expect at this point.

We have a couple weeks of slow but steady ahead of us.  We are just going to blood draw and giving IV hydration each day for this week, with the exception of one visit with the nurse Friday.

I went to Safeway today to do some shopping, leaving Terry home resting and receiving his hydration, staying away from the crowds.  It was a nightmare!
I will try to keep this long story short -
I had purchased a $75.00 gift card that wasn't working and I had to take care of that first thing.  It took at least an hour with customer service and phone calls to get that thing straightened out.  I was so frustrated that shopping was kinda difficult, but I pressed forward.
I piled things high in the cart trying to purchase something that Terry might enjoy eating, since he is not really feeling like eating anything right now. 
I finally got thru the check out stand and all the groceries were put into my personal re-usable bags. I ran my credit card and ...,  Oh my goodness!  It was not my day. My VISA card didn't work.  Okay, that was embarrassing, but I've had that happen before, because I have Chase using the same number in Nevada and Connor using the same number in Pennsylvania and it confuses "the computer" and I have to call in to make sure the purchases are authorized.  
I have never had a problem with American Express, so I pulled it out and used it and it wouldn't take it either.  WHAT? 
Wouldn't you know it - my check book was in the cupboard at the apartment because I try to empty my bag so it's not so heavy carrying it to the clinic everyday and I didn't put it back in my bag before heading to town.  Oh Bother! 
I asked them to leave my stuff in the cart and I'd be back.  I went to the car and called both cards and each said that because I confirmed the purchases, they knew it was me, and I would be able to use the card.  I should be happy they are making sure it's me making the purchases, but it is not a happy thing when the card is denied.  NOT AT ALL!
Anyway, I went back in line, waiting again thru the large lines to pay for my groceries. I couldn't believe it, VISA was still not accepted, but luckily the Amex was.  
I think the second problem was the stores equipment though, because it took two swipes to finally make our $30.00 cash card from our Thanksgiving package work, and I called the card again and they said there was no problem and no denied purchase, so it didn't go thru.  NO FUN!

I got back to Terry just as he was turning off his pump because it was complete, so I disconnected his line and put groceries away. 
I had been away 4 hours.  I thought maybe it would take me an hour.  I don't wanna go back! 
I'm not sure that was as short of a story as I thought it might be ..., sorry!  It's one of those days!
  

We thought we'd have the kids come visit for the Thanksgiving weekend, but because of Terry's critical condition for the next couple weeks they tell us to stay away from crowds and from people that are sick ..., visitors are not really a good thing right now.  I understand, and I want to do what is best here and not cause any problems, but I am sorry that they cannot come. 

I am however, grateful for the other family members, friends and neighbors who are taking care of our children.  They will still have a great Thanksgiving, but it will be different than any other we've had before.  I am very happy that we had a Thanksgiving dinner the last weekend we were home.  I'll be holding that thought in my heart tomorrow.


We are grateful for family!  We are grateful for Christ!  We are grateful for life!
We are grateful for tender mercies!

We are grateful ..., ..., ...,

(I am grateful this day is almost over!)  ;)

Tuesday, November 26, 2013

T3

Today's post is short and ..., well, not so sweet ..., just short.
Terry's morning was filled with nausea causing him to throw up a couple times, but this afternoon and evening he hasn't thrown up, though the nausea is still present.  We had a blood draw and picked up meds today, but stayed home the rest of the day just resting, hydrating, and trying to feel better and keep a little bit of food down.

T2 update - Hickman Line Cover

I can't believe I forgot this when I posted yesterday, but I'm so glad Terry remembered it this morning.

We were waiting for blood draw yesterday and Terry was sitting by and visiting with a man who was waiting for (possibly his son) another man who was in getting his blood drawn.  Terry had a pleasant visit with this man and I was sitting there thinking how pleased I was with their conversation and almost instant friendship. 

Then a man walked out from the lab, over our way, and was tucking his Hickman Line into his shirt.  My heart warmed and my eyes flooded and I almost felt unable to speak.  The cover he had on his lanyard was a cover that BrittanyJo had made.  This man coming toward us, was the person the man sitting down was waiting for.  I couldn't resist sharing with those two men that I had noticed his line cover and that it was our daughter who had made that one, and Terry was wearing one of the same fabric that day.  They were happy to learn it and told us to tell her thank you. 




It was such a tender mercy ..., one of those small and simple things that mean so very much. 

I guess yesterday was a bit of an emotional day for me - almost crying at the lab and then laughing at myself in the halls of the 6th floor (you'll have to read the previous post if this doesn't make sense to you).  Both were fine moments, but the one certainly warmed my heart and made my day.  Thanks BJo!


When Terry received his first line in 2010, they used medical tape wrapped around the lines that they would then clip to the lanyard.  They suggested buying baby socks instead of the tape if we wished, which we tried and it was awful since they kept getting caught in the clip and fuzzies were everywhere. Then the wife of a patient made some of these little envelopes/cases for her husband, and a few extra to share. 
Terry got a couple of those, and we really liked them.  I shared the idea with Ellen because she had asked if there was something she could do to help and I know she is a great seamstress and she made Terry some line covers (thank you Ellen), including some plain white ones so they don't show up under his white shirts.
No one else seems to have the white ones, because the nurses are always commenting on them and how they seem to represent a purity and cleanliness that the others don't.  However, we are told that many of the female patients go for the design and color, even trying to match the outfits they are wearing.

After they put this second line in this year they gave him a couple line covers - no more tape, everyone gets a couple line covers right out of the operating room after receiving a Hickman.  That lady who started this a few years ago could have made some good money if she patented her product, but instead it is kind people serving others that makes everyone so happy around here..., anywhere for that matter.

Terry is still using covers that Ellen made, and new ones that BJo made.  We are grateful!




Monday, November 25, 2013

T2

I'll just get right to the point today -

Terry is fatigued, nauseated, aching, has a headache, has chills on occasion, and bowel issues on occasion, his skin hurts to rub on it when changing or drying off from the shower, his hands and feet tingle, his mouth tingles and feels numb, and he is very shaky, oh, and he moves slowly.  He has a hard time taking some of the medicines some of the time, and today he threw up after he coughed a bit this afternoon, but that was the first time he'd thrown up since Friday night and we are hoping that it won't happen too often.

I could have missed something, but I'm trying to think of the things we discussed during our clinic visit today. 

Other than that, he feels okay!  Right! ;)

We will have blood drawn and tested daily to keep current on what is happening with his system.
Today platelets are at 18.  That is not surprising to them, but if it gets to 10 they will give him an infusion of platelets.   (I am trying to remember, but I think normal is about 150-400.)   He will also have hydration daily so we are really happy that we can do that at home/apartment.  (Yay for the Hickman Line.)

We didn't talk about any other blood counts, but they are certainly not normal and won't be for awhile.  We are confident that the team will take care of him.  Have I mentioned that they call the group of doctors and nurses and coordinators, etc. that work with us a team?  There are several teams in the clinic and we are on the tan team for this transplant.  The next couple weeks are critical and we are to do our best to stay away from groups of people and anyone who is sick.  He won't be able to handle it right now.  

We went to the clinic twice today but it was a chilly day and Terry wasn't up to walking especially in the cold.  So we took the shuttle to the clinic both times, and back to the apartment this evening.  But this morning we walked home in a little bit of sunshine after the blood draw.  It was so much better to be going thru transplant in Seattle in the summer when it was not so cold.  We won't be able to walk as often as we'd like because we can't chance getting chilled and sick.


Okay, on the lighter side -
I am going to have to slow down a bit or I'm gonna lose Terry when we walk.  I have noticed the last couple days that I just get up and go like normal and turn around a few steps later to see that Terry is still several steps behind me.  I am aware of it and I'm trying.  I had just mentioned that to the team and then as we were walking down the hall after leaving the room I turned the corner and turned around to talk to Terry and he was no where to be seen.  A couple seconds later he came around the corner and I had to laugh at myself again.  I really need to watch that!  Maybe if I say it out loud enough I'll remember it. SLOW DOWN!  He has every right to go slow right now, and I've gotta not push him or make him feel like he needs to keep up. 

I decided to get that puzzle done and send it back to the lobby cupboard.  It was missing 5 pieces.  It's very pretty though.  I'd love a garden just like it.



I think I'll start working on scrapbooking now.  I also decided to change the scrapbooking area today because I needed to have more room on the dining table for the laptop since I couldn't keep it on the scrapbooking table anymore.  So, here is the change.

From the scrapbooking in the dining area, when we first moved in
To the dining table in the dining room

 



And from the living room as it was when we moved in
To the scrapbooking area moved into the living room



The living room is a little more filled this way, but with just the two of us it's not a problem.  Each way has it's pros and cons, but as we walked in this evening after our clinic visit I looked down the hall and felt a more comfortable feeling ..., more like home.

We used to see the table, but now we see the sofa.



Not a big difference in the camera, but it was a big difference in how I felt when I walked in, and that is good.

Okay, I've said enough for the day.  We hope all is well for you and yours. 




Sunday, November 24, 2013

T1

Well, we woke up in the hospital this morning.  That's one of those "duh" things.  I don't say that complaining, it's just the first thing I thought as I began writing and decided to write what I was thinking.  Overall, things went well. 

I had more than just a chair this time, this was my bed -



Okay, now that we got the unimportant things out of the way, lets focus on the things that really matter.

The stem cells got started around 5:30 Saturday evening and didn't get finished until ..., well, we can't remember for sure, but around 11:30pm.  Terry had no adverse reaction to them, so we were pleased.

Sometime during the night we got word that Terry's red counts were low - 25 and the threshold is 26, so this morning they infused red blood cells, so with that and more fluids, they postponed our Sunday morning discharge until Sunday afternoon.  They are trying to flush those kidneys and keep him hydrated.  If we keep this up for long he is going to feel more like a water balloon.  Instructions are to give him hydration every day for a few days, so water balloon it is.

He is feeling strange - strange or goofy is the best way he can describe it right now.  It must be hard to tell what he is really feeling, but he knows it is not normal.  Just not well.  In addition to those goofy feelings he still has the pins and needles feeling and tender skin, but there has been no throwing up yesterday or today, so that's good.  Unfortunately he still has a headache, so that's not good.

Things are changing in his body and he can switch from one problem to it's opposite (like constipation to diarrhea or feeling no nausea to throwing up) in just a couple hours.  It's going to be a tricky week or two or ....


Good doctors and nurses help make a stay in the hospital more pleasant, and we feel like we got some great ones.  People are coming and going all throughout the day and night in the hospital.  We have seen so many new faces. However, one was a familiar face, our pharmacist came in to tell us about our new meds schedule and give us a new copy.  I am so happy to have that copy.  It's a three page list of meds and instructions for each and when they are scheduled throughout the day so they don't interact with each other or with foods we eat.  It's kinda tricky.

One doctor thanked Terry for being cooperative and agreeable. 
One male nurse saw us walking in the hall this morning and said hi to us.  He looked again and recognized Terry from having come in our room one time yesterday for a couple minutes to verify his blood product.  He then, once again, wished Terry a happy birthday, one day late.  The staff members are very pleasant and want to help make their patients happy.  They are succeeding with their good efforts. We are grateful for them.


I looked up and saw this board in our room, wishing Terry a Happy Birthday.  It was there when we came in yesterday and I just didn't think of taking a photo of it then.  The only thing that ever changed on it was the RN's name, and that wasn't always updated, so I am glad I saw it today so that I could get a photo of it and share it with you.



We did take a walk around the block this morning ..., well, the inside block .., the halls of 8 NE - that's what they call the wing of the hospital we were in.  We stayed inside, but the sun was shining nicely outside and we were able to view that from a few windows.  It was a slow walk, but when your reds are so low, where's the energy?   We would have walked longer, but the nurse met up with us and needed to take some vitals, so we had to go back to the room. 

Terry finished up the infusions and we were free to go.   We got home from the hospital at about 4:00pm. 

Terry is cold and icky and fatigued.  Oh Bother!  He tried to eat ..., succeeded with a little bit of applesauce but didn't want anything else.  He took a few meds, and has a few more left to take before the day is over.  He is resting, and I'm trying to be quiet.  So that means computer and puzzle.

I'm frustrated with this puzzle because it is missing some pieces.  I just don't know how many yet.  Puzzles with missing pieces are not worth much.  I'm gonna brand the box with "missing pieces" before I put it back so the next person won't get frustrated too.  I can't stop and put it back in the box without finishing it, believe me I've thought of it many times, but it's just not something I can do.  I've got to finish it quickly so I can put it away. 

Well, I think I've said enough today, so I'll stop here.  If I forgot something I'll post it later.


Saturday, November 23, 2013

Stem Cell Infusion

We walked to the clinic for blood draw this morning.  The weather was chilly, but not as bad as the days previous.  Coming back was beautiful as we walked over the overpass and the sun was shining warmth down onto us.  It was a wonderful warm feeling.

Terry is feeling a little better today. He hasn't thrown up, but has not eaten very much either.

We are in the hospital and he has been receiving cells for a few hours now, and is tolerating it well.  Nurses and doctors have been coming and going from the room all afternoon.  Everyone is very kind and wants to be helpful.  Today might be an "easy" day compared to yesterday and the days to come.  We are grateful for it.

The bag of cells can be seen hanging with the fluids - they are the red bag.  It's just that easy - they connect them to the Hickman Line and they are infused just like the fluids or any other blood product.



We will stay the night and if all is well, go back to the apartment tomorrow.  He started up Cyclosporine again tonight, but a bit smaller dose.  We'll see how that goes.  He is feeling tired, and is ready for some sleep, so I'll say good night and turn out the lights.


We thank you for all your prayers on our behalf.  Over here (meaning clinic, hospital, bus drivers, etc.) the best they can do is to send "positive thoughts" our way.  We appreciate those too, and must remember that to some that might mean prayers, but we love the faith that is accompanied with prayer.  We are grateful for that faith and prayers.
 
A couple of the nurses today have wished Terry a happy birthday because these cells are a sort of re-birth for him.  I pray that is the case this time!  Maybe we will have cake and ice cream on November 23rd next year?????

Okay, lights out!
Love ya all!

Friday, November 22, 2013

Hello Family and Friends

Friday - the day that everyone seems so excited have over.  It was the talk in the clinic today as I waited for Terry.  Many were happy that it is Friday, so they could move on to the rest of the weekend.

As I sit and write this I feel like joining them in their joy of Friday being almost over.  Terry has been feeling crummy all week, but this afternoon is the hardest.  He is chilling and throwing up and feeling awful.  He is in bed trying to be warm and as comfortable as possible in the condition he's in.

We received a call for him to check in at the hospital at 1:00 tomorrow.  The cells will probably be there around 4:00pm.  Hopefully that day will go better than this one. 

We got another call telling him he should not take his Cyclosporine medication tonight or tomorrow morning, and that he should come in for a blood draw tomorrow at 10:00am for a levels check to see how much he will take after that.  That is actually good news because we know that mediation really has been causing many undesirable symptoms.  His skin hurts to rub against it, he feels shaky and itchy and icky.  Too much cyclosporine - so now we'll get a better dosage for him.  It's kind of trial and error with this stuff sometimes.

TBI (Total Body Irradiation) is pretty hard on a body.  It's not so bad at the time of radiation, but it's a few hours later that it really attacks - or at least that is the case with Terry and the dose of radiation he had.  The attending nurse (a man) told me that Terry was a strong man and that he did very well. He seemed to be impressed with him.  I agree with him, Terry is a strong person and he has a high tolerance for pain, so when he does a little "complaining" I know that things are pretty bad.  Often times he doesn't even tell me how bad he is feeling, but I am learning that I can see it in his eyes ..., I'm learning how to "read" him.

I hope he gets feeling better soon, because he's feeling pretty crummy right now.
However, as awful as it is, we are glad to have each step in this process getting done.  We have been waiting long enough now, and are anxious for things to be happening ..., positive things!

Well, I guess that's our day!  We hope yours is a good one!
I think I'll go find a piece of chocolate!

Thursday, November 21, 2013

Okay, Today's News Today!

I didn't forget to post about today, today!


We received a Thanksgiving package this morning from "The Volunteer Service Program" and "generous donors" at the SCCA Clinic.


A few days ago I got a call telling us that we had been selected to receive this package.  If I remember correctly, someone had suggested it or given them our name.  The lady that called was so happy sounding and pleasant that the call itself made my day.  I truly felt Heavenly Father's love for us through this woman on the phone.

I knew that we didn't really need this financially, but we did need to feel this love.  I can't express how happy and pleased we were after this call.

I was told when and where to go to pick up this package.  A few seconds after we hung up she called back and said she just realized that we are in the Pete Gross House and that means they would deliver it to us. Can it get any better?  I think not!  Anyway, today they delivered it. 




It came in a reusable bag, not just a paper bag. They couldn't deliver perishables, so they included a $30.00 Safeway card.  We do feel blessed.  We know that the Lord is aware of us and loves us.  We are so grateful for the goodness of the people who give and share and bless others lives..., our lives.

 
Oh, we got a new toilet today too.  The toilet in our bedroom wouldn't flush, so we told them and they came and checked it out the next day.  Two days later they replaced the toilet.  Easy as that!  Never had it so easy!
 
We had a blood draw and clinic visit and pump teach today.  The only new news at the clinic visit was that we know for sure that the donor will take two days to collect, which means transplant will be Saturday.  Terry will receive TBI tomorrow.
 
The pump class was to remind us how to use the pump for hydration that Terry is now getting here at home.  I remember being so nervous the first time I had to be responsible for this, and today I was much more relaxed.  I guess I proved I could do it already.  I still have a little concern ..., enough to help me make sure that I am doing it right.  It's hard to tell what this next picture is, but it's a back pack with his pump (bottom left side) and his hydration (upper right side).  This photo was taken after I set it up and connected it to his line - it's pumping right now, and takes a total of 4 hours to infuse 1000 ml of fluid.  (He's almost done.)
 


Terry is feeling about the same as yesterday.  Tomorrow could be the worst day yet depending on how he feels after TBI.  It wasn't too pleasant last time, as he was throwing up and feeling rotten.  I so wish I could make things better for him, but all I can do is love him and help him, and pray for him.  I'm doing all that, so now I need to keep a good attitude! 

The sun was out today and yesterday, but the chill in the air keeps our hands and noses cold as we walk to and from the clinic. 

Oh!  Gotta Go!  The pump is beeping, telling us it's done!

Wednesday, Day 3 of Conditioning

My Bad - I went to bed without posting last night.  Sorry!  I remembered at 10:00pm, but didn't want to get up and do it then because I get up early in the morning no matter what time I go to bed, and 10:00 was already late enough.

Wednesday was a simple day for us as far as appointments go. 
Infusion at 8:00am.  The nurse and doctor came to see how Terry was doing.  These people, including our infusion nurse today, are all good people and we are grateful for their care.

We didn't leave the infusion room as early as we did the last couple days, because Terry had to have some more fluids.  They watch the creatinine levels here really closely and want to make sure that the kidneys are getting enough fluids to flush through all this medicine and chemical they give him, especially now that conditioning has begun and transplant is on it's way.  That count was too high on the last lab report so they want him to do some daily IV fluids.  We haven't had the pump class yet so it was done in clinic yesterday. 

They told him to drink more, which he did, and now he's getting IV fluids so he is feeling pretty water logged now.  With the other crummy feelings he has, including a headache, yesterday became a kinda miserable day for him.  He is getting deeper into this each and every day and is not looking forward to the way he will feel after TBI and transplant.  I really hope and pray that this works!

He got to take his last Bactrim yesterday and today he gets to take his last Allopurinol, but tomorrow he begins MMF, which will put him at 32 pills a day, 6 different times a day, and more if he needs some for nausea or in clinic procedures.  It is getting kind of tricky.  (No wonder his kidneys are complaining.)  They give us a great medicine schedule that helps a lot with figuring out times of day to give them, so I transfer some of that to our weekly schedule to remind me what days he starts and finishes what medicines.  


Well ...,
I am wondering if I should report about today on this post, or wait until tonight ..., 


While I was processing that thought I heard another siren.  That happens often throughout the night, similar to the coyotes at home.  I do not really like coyotes, but I don't mind hearing them.  It's kinda cool sounding sometimes, so long as I feel safe inside.  These sirens aren't as pleasant of a sound, because they usually mean distress of some sort, and even injury or loss of life or possessions, so it's a bit unnerving to hear.  I suppose one gets used to it after months and years of hearing it, but it's not quite as nice for me as coyotes yelping and sounding off in the fields.


Okay ...,
I have processed that thought and I think I'll wait.  I'll write you again tonight to share todays happenings.

Love to all!
And again, sorry I didn't get the word out last night ..., my bad.  Getting up at 5:00am is too hard if I don't try to get some sleep around 9:30 or 10:00pm the night before.  And I can't seem to keep myself asleep past 5:00 or 6:00am.   Oh Bother!  Sometimes it is just too early.


Oh! I almost forgot!
I borrowed a puzzle from the lobby yesterday.

 
1000 piece puzzle of flowers.  There's more than one way to enjoy a beautiful garden.  Taking care of this garden won't be as dirty ..., my fingernails will stay clean and there will be no dirt or pollen in the room ..., but it might be as time consuming.  It's a tough one. 
But no more eating at the dining table until it's done!  ;)

Okay, write ya later!

Tuesday, November 19, 2013

Second Day of Conditioning and Gettysburg Address

Well, today we had blood draw on the 6th floor instead of the 1st floor, which meant we could go in at 8:00am instead of 7:30am.  That half hour was nice.

Chemo infusion was at 8:30 and we were out of there a little before 10:00.

While in the infusion room Terry began to feel flushed and itchy.  He was only getting the saline at the moment so he knew it had to be something else.  His thought was that it was because of the new meds he took this morning - Cyclosporine (si [long I]  klo [long o] spore een).  It continued getting worse, and was very irritating.  He mentioned it to the nurses.

The infusion nurse and the clinic nurse both assured us that it was indeed the Cyclosporine that was causing those problems, and that those symptoms would probably not last forever.  Sadly, he could not take any Benadryl because of his appointment after infusion, but luckily, those irritating symptoms did eventually subside.  The flushed feeling is gone, but the itchiness is still present though not as bad.  Too bad he has to take another dose of that stuff this evening.  He's not looking forward to it.    

After infusion we waited for the shuttle to take us to the UW Medical Center for an appointment with the ENT.  Dr. Davis said that things are still pretty swollen and that the low platelet count could be the reason for the blood that is still present.  He says to keep up the irrigation/rinsing and come see him again in January.  Yip, January ..., we have made our first appointment for next year.  WOW!   Todays appointment was not so pleasant because the doctor caused some pain and suffering during the check up. For a body that is already weak and uncomfortable, that just added more irritation.  Oh Bother!  We left the office with Terry feeling crummy, but you know ..., he's doing fine!

He's chugging water and juice, trying to hydrate his body as instructed.

So that is the medical news for the day!
Other news:
We were reminded of this while listening to the news today -

Abraham Lincoln
Abraham Lincoln delivered
the Gettysburg Address on
this day 150 years ago.
(images from Bing search)

















Monday, November 18, 2013

Conditioning Begins

We started somewhat early this morning, walking to the clinic for our 7:30am lab appointment. 
We had some time before the infusion so we stopped at the Resource Center for a few minutes. 
Then, off to the infusion room for the Fludarabine infusion.  The Conditioning Began!
That was easy!  In at 8:30am, Out at ..., well, the clock was broken in that room, but we think we were out around 9:45am. 
That was the end of our time at the clinic today!

There was still much to do.  I hadn't done any Saturday cleaning last week, so today was the day for that ..., vacuuming, mopping, dusting, cleaning bathrooms, etc.   I added laundry to that list of things to do too, including bedding.  So, by the end of this day, everything will be nice and clean.  I'm leaving ironing for tomorrow though. ;)

Do you remember the construction out our window at SCCA House?  We showed a few photos HERE.
Well, I don't think I've told you about the construction out our window here at Pete Gross House.  It's at a different stage, but it's happening.  Pete Gross House is to the left of this view from the street.

 
This view is from our window, looking East.
 
 
You may have noticed in that photo that there was a large white bag of mulch being raised up to the roof with the crane. 
A big crane pulled in (in the dark of morning) and was setting up before we left for the clinic today.  They were still working when we got back, and didn't stop until quitting time this afternoon. They moved several bags and several pallets of plants up there too (over two semi loads).  We'd love to see what they are doing and creating up on that roof.
 
 
 
This next photo is out the North window.  (I have to admit I have to ask Terry what the directions are because I am lost over here.  It just sounds so wrong that I am looking toward the North when I look toward Lake Union.  And this next view is toward Lake Union. Not much of a view of the lake, but it's a little better when it's not foggy.) 


 
See the blue walls?  That is also construction. There were no walls when we first got here, and surely there will be an outside wall still going up.
 
Those are the only two views we have, because our South and West walls are inside walls.  If we could see the block to the South, we would see construction on the block across the street. I could keep going with other areas of construction all over this place.   It's amazing.  We've seen several homes and buildings that really need torn down and new rebuilt, and I'm sure that in time that will happen.

That last photo was taken this afternoon while the food truck was here.  It pulls in every day and several construction workers meet it and purchase their lunch.  We recognize the sound - in fact, the first time I heard it I thought it was an ice cream truck.  It's fun to look out and see the workers walking over toward it, almost reminds me of ants at a picnic.  ;)  After they are done, the truck pulls out, but today it stayed a few minutes longer.  Maybe they had to make more to sell before traveling to their next area.  ??? 

Well, that's our day and a little more about the Sights and Sounds of our little part of Seattle.

Sunday, November 17, 2013

Merry and Missionary and Medical Moments

I forgot to mention something that happened yesterday.  I was either cleaning or fixing a meal and Terry was on the computer when we heard some children talking and laughing.  It seemed to be so close and it was so fun to hear.  I walked to the window and saw that there were children on the deck below us.  It's not a very big deck but it is larger than the two foot ledge we have, and it was so fun to hear and see them enjoy the moment.  It was kind of a tender mercy for us, bringing some light and joy and cheerfulness to our day.  It reminded us of the fun times we had with our children and grandchildren when we were here over 3 years ago.  We have missed the grandkids, so it was a pleasant sound.  I even wanted to go out and thank them but didn't want their parents or grandparents to worry.  If we ever meet the people who live below us I will share our feelings of this merry moment with them.


First thing this morning I wrote to our missionary sons, as I normally do each Sunday morning.  We don't hear from them till sometime on Monday, but I like to be sure to get an email out to them early.   I always get to re-read their letters before I write them, so I was reminded of something Connor told us.  A little 7 year old girl was telling her grandpa that her favorite missionary was the black missionary.  The grandpa was confused because they have never had a black missionary in their area.  As they kept talking he learned that this little gal's favorite missionary was Elder Hebdon, the missionary who has black hair.  Connor's hair does look black when he gels it or when it's wet, and that is why she was calling him black.  So now Elder Connor Hebdon has become the first black missionary in the ward and everyone is having fun with that.  I thought it sounded so cute, it made me wish I could be a part of it, yet very happy that he shared that with us.  ;)

Chase sent a short email last week, but it was sweet.  He thanked us for being great examples for him.  His letters from previous weeks have shared that he is in a Tongan ward and enjoying the members there.  He says they are spiritually strong and very compassionate and kind.  He loves to hear them sing because of the sound and also because of the feel, as it touches his heart.


We enjoyed listening to a few speakers from the Saturday morning conference session.  Each Sunday during our stay for the first transplant (in 2010) we listened to past conference messages so we decided to do that again this time.   It's something I look forward to all week.  I love the counsel those great men and women give us and the spirit that accompanies them.  Each message makes me want to be better.


We walked to the clinic for a chemo teach, which means we learned about the chemos coming up and all of the medicines that Terry is and will be taking.  It becomes very confusing information, but we listened carefully, kept notes, and received a medicine schedule to help us.  We walked home and the first thing I did was pull out our notes and schedules and reviewed them and combined them so that I could be more prepared.  It all starts tomorrow at 7:30am.


We had a nice visit with Skyler today (on the phone) for about 50 minutes before we walked back from the clinic.  The nurse let us stay in the room to talk.  The clinic was pretty empty today - we were the only people in the waiting room, and we saw maybe half a dozen patients in the halls or other parts of the clinic. That's kinda the way Sundays are. 

There is a table of complementary coffee and cocoa set up in the lobby on weekends so we made some hot cocoa to help make our walk home a bit more pleasant since it was a chilly, windy, rainy day.


Thank you for your comments, emails, cards and letters.  We thank you for loving us, and letting us know that you love us!  It feels good and helps us along our way. 
WE LOVE YOU!

Saturday, November 16, 2013

A Little Red Vase and A Smile

Today was free of clinic visits but we filled it with other things. 

We had talked about going home for a day, but decided that driving in the rain in the dark was a bit tricky and then we heard that there was going to be a foot of snow on the pass and we did have much time, so we decided that we should stay in Seattle.

Then we got some cute photos of Elsie, celebrating her first birthday, and we wished we had made a different choice.   However, we are glad that we didn't have to drive anywhere in the dark, rain, or snow, and very grateful for the photos and video clips sent our way to help us feel a part of that event. 

Maybe you'd like to know how we filled our day ... well, we took a walk down the block. Actually, several blocks.  We came upon this along our way.


We wanted to get some fresh air and exercise and see some more sights and sounds of Seattle.  Seeing Terry Avenue was just a bonus for the day. We found a Goodwill, which was the reason for our walk in that direction, because I was hoping to find some vintage china plates.  We didn't find any, however I did get a goblet, an old pink glass, a sweet little butter knife, and a cute red vase.  Fun stuff.  The little vase is just like some I saw in the Shine, which is the little gift shop in the clinic.  They were such cute colors that I wanted one of each.  When I looked at the price I saw that they were $20.00 each so I carefully set it back down.  This one from Goodwill is the exact thing, but cost me 99 cents ..., pretty good huh!  There wasn't even a red one in the Shine, so I'm feeling pretty good.


They told me a story about the vases when I was looking at them in the Shine, so I checked online to see if I could find it, to share the story with you.  I found a sight here, just incase you are interested.  The short version of the story is that this company that makes the vases donates to those affected with cancer. They have so many great colors here, and will even take individual orders.  Do I feel guilty owning this cute little vase without making the donation to help those affected by cancer?  Nope!  I think I'm already doing that as it is, and I don't really think that 10 percent is enough for a little vase that costs that much.  However, I do thank the person who first purchased this little vase, and then gave it away so that I could get it for a dollar.  Love it!

I can't put any flowers in my little vase because we can have no live plants or cut flowers.  Those are the rules, and we will abide by them.  But it's red and cheery and it make me happy just looking at it.  Funny how that can happen. It is not a Christmas vase, but it makes me feel like it's my first Christmas décor for the apartment.  I can leave it up after Christmas and it will then be my first Valentine décor ...,  Happy Day!

After that stop we walked down another block and found an antique store - three stories filled with old furniture - chairs, sideboards, armoires, tables, and more of the same.  There were not very many little things in that store, mostly chairs and furniture pieces. It was a large store and very fun to look through, but we didn't purchase a thing. 

We walked back to the apartment and had lunch, then drove to Safeway for groceries.  We are trying to stock up for the next few weeks of lock down.  Not really lock down, but we aren't sure how Terry is going to be feeling next week with daily appointments and chemos, so this weekend was our last weekend before transplant and we needed to use it to prepare. 

Of course we are back at the apartment again, we've had our dinner and I'm doing laundry and cleaning, and taking a moment to send a post your way.

Hope your day was a good one!  We send our love!
see write ya  tomorrow ...


Friday, November 15, 2013

Friday

We had a blood draw today but we won't hear about results of that unless there is a big problem with the counts, so we expect a simple weekend as far as infusion or blood needs.

We met with the doctors to determine what Terry should do about the sores he has on his skin.  He has had these (they come and go) for several months now, but no one has suggested anything for it until now, and we have asked about them several times, including to our oncologist in Wenatchee.  We now have an antibiotic cream to put on them so that they might heal better.

When we stopped at the pharmacy we thought we would come home with just a small tube of ointment, but we ended up with a full large bag of medicines that Terry will begin taking after transplant. Our medicine shelf is stacked full now.  These are not new to him, and in fact, they are well known and not very desirable. He doesn't look forward to having to take them, but it will be worth it if this transplant works.

We are back at the apartment for another lazy evening. 

I was thinking that there have been too many days that I'm not sure what to write and don't feel like my posts are as good as I'd like them to be, but I post them anyway.  Today I thought I'd search for a quote to add, maybe something to help you smile, and ironically, I came upon this one - 


“If you would not be forgotten
as soon as you are dead and rotten,
either write something worth reading
or do things worth the writing.”
 
- Benjamin Franklin
quote found here


I guess I'll have to work harder at one of those things.  Hope you have a great evening.

Thursday, November 14, 2013

Friday, 14th

Today's appointments included a visit to the radiology department to learn about what will take place with the TBI (Total Body Irradiation) next week (22nd) and to be measured for it.

We also had a clinic visit with our nurse and doctor just confirming that Terry is doing well and that things are continuing on schedule. 

We picked up more meds for Terry to take, and will have an appointment next week to talk about more meds and get his meds schedule.   As the medicine counts increase daily it gets a bit tricky, especially since they will need to be taken at about 5 different times throughout the day, so those schedule sheets really help.  I'm looking forward to getting it.

This week has been slow compared to what next week will be, but we are anxious to get this week complete so that the transplant can take place. 

Conditioning starts Monday, the 18th, with transplant on the 22nd or 23, depending on when the blood product from the donor gets here.  She is a smaller lady and they do not know if they can gather all they need in one draw, and won't know until it takes place.  If one draw, transplant will take place on Friday night, but if two draws, then transplant will wait until Saturday.  We will know on Friday morning which it will be.  They reminded us that the two or three weeks after transplant are very critical and that we must be very careful.  We promise to do nothing to compromise his health.  We do not want to do anything that will make this not work.

Surely this lady somewhere in Europe, our donor, is feeling anxious about what is taking place in her life, and we are so grateful for her selflessness in our behalf. We are grateful that she is a match for Terry and willing to share. May the Lord bless her for her selfless service.

http://www.bethematchfoundation.org/site/PageServer?pagename=ecard_preview_btm_flowers
Be The Match



Wednesday, November 13, 2013

Wednesday Appointment

We had just one appointment today, and that was to sign the paperwork to let the doctors perform this transplant.  The paper is signed and we continue to move forward.

There is really nothing new to tell, so we will take each day, one day at a time, and share what we can with you.



image from here



 

Tuesday, November 12, 2013

Weekend Report!


Our weekend was wonderful!  We enjoyed our time with family.  There was a new addition to our gathering - Michael and Tawnee have a puppy, named Ginger.  Auger had a few moments of fun with it. 


The little ones enjoy being together and I enjoy when they are together.   Here they are playing with the Duplo's and the empty Duplo bucket (on wheels).

 
 

We had some other guests too, not new to the family gathering, but visiting for the weekend, and different than any other weekend this last couple months.  Brandon and Megan and we all loved having them here - it didn't take long for the kids to really enjoy being around them.  Wish we could do this more often.  (I'm so sorry for the blurry photos, it's not a very good camera for movement, so it's tricky to get it right, but just look at the fun they are having.)


While we were together we decided it would be a great idea to have a Thanksgiving meal.  I didn't want to do too much for the décor because we weren't going to be home very long, making clean up a bit tricky with so little time.  I did however use the assorted china and goblets - a look I love.

 

It came time to say good-bye to Brandon and Megan - we will miss them until next time, but we are grateful for the time they spent with us this weekend.


I had almost forgotten to give Elsie her birthday gift, so I was happy when I remembered to do that before we left.  We won't be able to be here for her birthday later this week.  ;(  We gave her a blanket and a baby doll.


Elsie enjoyed her doll for a moment, but was very anxious to be up and going. She has such a sweet smile and we are anxious to watch her grow.  It was so fun to see some of the new little things she is doing (like climbing up into a children's rocking chair all by herself) and will be anxious to see her growth in a few more months.


We gave Akleigh a baby doll for Christmas, just like this one we gave Elsie, so Akleigh was worried that we had taken hers. We assured her that hers is at her house and this one is for Elsie.  She still loved and hugged it for a minute.  She loves babies.  It's so sweet to see her be so tender with them.



Tuesday morning came and it was time for us to travel back to Seattle.  There was rain, but it wasn't bad, and there was a lot of traffic when we got past Issaquah, but thankfully, we were able to get where we needed to be with some ease.   So we are back in Seattle again and anxious to get this transplant going strong.  It was a simple blood draw appointment that brought us back for the day, but each day gets us closer to T-day (transplant day). Our home visits are probably done for a few months so we are happy that this last one was such a good one.




Saturday, November 9, 2013

Friday Report!

Friday appointments included a blood draw and a CT scan for Terry.  These might seem somewhat easy, and indeed they are, but Terry has been having a hard time sleeping, due to the chemos and meds he's been given, so he's feeling quite weak and tired, though not sleepy enough to sleep, so he was up all night Thursday, which seems to make him more weak, of course.  I can see that he is shaky and hear that his voice is not very strong, but  I am glad that all this will subside with time. 

The drink he has to take for the CT scan always makes him feel strange too, so that will not be pleasant.

We did some grocery shopping in the morning before heading to the clinic.  We walked home at about 4:30 and anxiously awaited the arrival of Brandon and Megan.  They came and saw the apartment and then we headed down the road, with Royal City our destination.

We had one stop on the way, and that was Costco at Issaquah.  We purchased the final groceries needed and headed home, about 6:30. 

I have a hard time driving at night because I just can't see and judge distances very well in the dark, and it's so much worse when it rains.  It started raining, so I was struggling.  I was so grateful for the new roads that have been constructed just over the pass, because the lanes are wider and the lines are brighter, making it a bit easier than years past.  My eyes were glued to the lines and I couldn't tell you how anything else around me looked, but Terry says there was no snow on the pass.  The trees were pretty, with a bit of snow on them when we traveled over Tuesday ..., I guess that's gone, but I can only tell you that because that's what Terry told me.

We are happy to be home again!
(For many reasons.)

Photo for today is a duplicate - if you saw this post, a couple days ago, you might wonder why I'm posting the same photo again.  Well, let me tell you -


We did some counting as we walked this hill to give you an idea of just how steep this is.  The corner where Terry is standing is where I will begin.  I'll call that floor level, which it would be if we were up to the end of the sidewalk all the way, or inside that building Terry is standing beside.

Walking down this first block takes us down almost 3 stories difference.
The next block is 1 story difference from one end to the other.
The last block down this walking route is a 2 story difference.

So, that is about a 6 story difference from the top of this hill to the bottom of it, where we turn left to go to the Pete Gross House - about a three block walk. 


Maybe I'll remember to get some photos this weekend so you can see something new on the next post.

Have a great weekend!



Thursday, November 7, 2013

Thursday - last Ofa infusion before transplant.

Ofa (chemo) infusion today, then home resting because Terry is feeling the effects of the last couple days.  He's okay, just needs to relax.  Happy to have one more day down!

All is well!

Wednesday, November 6, 2013

Tuesday and Wednesday

We made it back to Seattle without any travel issues (Tuesday, late afternoon) ..., clear roads and not too much traffic, so all was nice and smooth all the way to the apartment. 

It was hard to leave home again, but we were rewarded with a visit from my mom and dad.  They were on their way home from after attending my nephews wedding and decided to stop it in and see us here at the apartment.  We had dinner together and a nice visit.  It was good to see them and to feel of their love and concern - a great way to help the rest of the week slide by.

Wednesday began with a blood draw and a clinic visit.  The visit with the doctors was somewhat normal, they say things are going well, and transplant is on schedule.  3 more meds were started (nothing really new, just some he hasn't been taking for awhile and needs to start up again).   Then the dreaded bone marrow biopsy.  REALLY!  It has apparently been too long since they did the first one when we arrived and they have to have a more current baseline for transplant.  OH BOTHER! 

Well, that went well, except that one side required a second drill for the piece of bone they have to take out.   The lady that performed the biopsy told us that she tried to talk the doctors out of having to do this biopsy since it was only five weeks since the last one.  Then she tried to talk them into just doing one side, but ..., well, the doctors couldn't be talked out of it.   Both sides ..., again!

So, that was done, and we headed back to the apartment.  A few minutes later we had our second set of guests at this apartment.  Tawnee and Michael came and then we went out for lunch.  We enjoyed their company and then we went our separate ways.  Oh, but they are sneaky - we got up from our meal and Terry took the check/bill up to the counter to pay and Michael had already given them his card, so lunch was on them, not us.  You have to watch out for him!  He's a good guy!

This is a great week - in two days we will have two more visitors and then head home again.  Brandon and Megan are coming, and then we will all head to Royal for one last weekend before transplant.  Surely it will be a lovely weekend.

Only two more days here!  ;)

I apologize for not getting photos of our guests, but I did have my camera when we walked to clinic this morning, so this is what you get for photos today.

These flowers are still so pretty.  We get to see them on our walk every day.



Here is one of the hills we climb every walk to the clinic. I was talking with Terry about how steep it felt and when we got to the top he told me to look down the line of the bottom of the brick on this first building ... it's the level that we are standing on at the top of the corner.  Then follow it to the end of the building and it's above the roof of the next building about half way down the block.   It just keeps going down and down.  Up is hard, down is tricky. 


We are back at the apartment resting now, with a new day ahead!  Hope you are having a good one!

Tuesday, November 5, 2013

More Fun with Family

After watching a Joanie Bartels video - The Rainy Day Adventure, the kids enjoyed their own adventure going around and through this "limbo box".  They had so much fun and we had a lot of fun watching them. 






Our weekend is over and we are heading back to Seattle.  It was good to be home to enjoy some of the normal day to day life without medical issues.  Oh wait, we still had those, and that's kinda normal too, but just being home was great!  After a week with a sore throat, and it getting worse daily, I (Elaine) went into the clinic Monday to find that I have a sinus infection.  I knew I needed to get in to the doctor so that I could start taking meds to clear it up if is was necessary, but I thought it would be more of a throat issue than a sinus issue.  Crazy huh!  Anyway, I'm on the meds ..., on the mend.   It seems that we must have all caught this bug, because most everyone of us has a sore throat or other problem. I suppose we will trickle into the doctor and get it all taken care of.  Maybe by next week we will all be healthy again.  HOPE!  PRAY!

Lastly, one of the normal happenings was that we heard and saw these planes going over the house.  This has been a normal occurrence for ..., well, ever since we've lived here, over 20 years now.  However, this is the first time we have seen 7 at one time.  Usually there are 2 or 3, and maybe we've seen 4 or 5 a time or two, but never this many, so it was kinda cool.  Sometimes they are so low it feels like you could reach up and touch them.  I always enjoy seeing them.