Showered

I got my shower today. I am out of practice. Yes, it's a real thing. I was still careful of my hole on my chest. It will take a few more times until I relax and really enjoy the shower.

I thought today was Friday. It was a nice surprise to find it was Saturday. We went to dinner at the Hamiltons. Very nice, indeed. Thanks for having us!

We got a walk in today. Chip misbehaved around the horses. Very embarrassing. But it was a lovely day to get out.

Thought for the day:

One More Sleep

One more sleep and I can shower. Ahhh.. Relief. I know what's going to happen. I will be in and out in 5 minutes. But it will be a nice, warm 5 minutes.

I got to see Buck today. That was my visitor for the day.

A big thank you for the drop off gift from the Tonellis!

Today had lots of doggie play time.

Hair and nail report: both growing well. Almost as long as my fingers.

Kent did a whole lot of running around today. The last thing he did was go to Publix for emergency ice cream. It took a very long time. He kept running into neighbors. He came home in such a good mood. Kent wanted me to thank you, neighbors who read the blog, for your support this evening.

Thought for the day:

Relief?

Well... I got my port out today. Just local anesthesia, like they said. The lidocaine was the only "painful" part. The person doing the procedure was the same I had two days ago, Suzanne. She had also remembered doing my lumbar puncture once. Great memory and a very nice lady.

The worst part of getting the line out was the explanation of what was going to happen. I would rather have been surprised. They took the length of it and yanked it out of the hole, so it made all sorts of turns. It took a while, but didn't hurt. And no, I didn't look at the alien they pulled out of me.

Now it's a bit tender. I have to leave the bandage on for 48 hours, then I can shower.

I was productive, then took a nap. That was about it for the day. Tomorrow I will make a pizza cheese ball. I happen to have the ingredients. Barely. I need some new snacky foods. Plus, I think it will be good on a bagel or mixed in scrambled eggs in the morning. Just thinking...

Here's our happy quote of the day:

Great News!

I forgot to mention the best thing about yesterday. I came home to a clean house! Linda came in and did a cleaning while I was gone. Hey! I should have big days more often!! Thank you, Linda!

We changed the bandage on the bone marrow biopsy site. It looks good. (But I am still a little traumatized. They used a Makita on me.)

I got the call I was waiting for this morning. Tomorrow I will get my line out. The "line" is a NeoStar 3 lumen catheter. It was necessary for the transplant, and very handy during recovery. They can take blood samples without sticking me each day, and they can easily (and quickly) administer saline, medicines, plateletes, blood, etc.

Last gross photo of the line:

See how it tunnels under the skin to the clavicle? It then it drops down in the chest cavity. GROSS!

On to nicer things to think about....

Curt and Darlene returned from their vacation.  We had a nice visit. They even brought me gifts. Very generous and appreciated.

Thank you, Curt and Darlene!

I have to get to bed early for my early appointment.  Buffy will take me in (thank you!), and Kent will pick me up after his trip. But there will be no sleep when these three are playing.

Last good thought of the day:

Day 100 Testing on Day 102

Clinic went well today. 12 hours door to door. Not eating from last night until 3 pm wasn't that bad. But I was ready for my complimentary sandwich and Sprite.

Here are my numbers:

White blood cells up to 5.8 (normal is 4.8-10.8)

Hematocrit down slightly to 27.8 (normal is 38-48) so I got a unit of blood

Plateletes down slightly to 133 (normal 150-450)

Absolute Neutophile Count up to 4.76 (normal 1.70-8.90)

Magnesium up to 1.7 (normal 1.3-2.7)

Potassium down to 4.6 (normal 3.5-5.1)

Thank you, Buffy, for the ride in. Kent really appreciated sleeping in and getting some stuff done. While I sat at clinic. I got the labs pulled and a bag of fluids. One of the blood tests had to be pulled from a vein. I have huge veins. The nurse poked me and said oops. She blew it. So she bandaged that arm up and got someone else to try the other arm. We filled the vial until it stopped. And we bandaged that arm up. About an hour later they came again. Apparently the vial was supposed to be completely full, so they pulled two more vials from my hand.

Not a very good start. Then I find out I need blood. Type and cross takes 4 hours an I had to do the other tests. Luckily I had time after the procedures to go back. Saves us a trip tomorrow!

The biopsy was weird. It took forever to check in. They used a CT scanner to find the perfect spot. Then they used a power drill to take a sample. I wasn't knocked out completely.  Gross. Then apparently I flipped over for the CT scan. I don't remember that. Somehow I got on a stretcher and was wheeled to recovery. Kent was there and came with us.  The fog cleared quickly after that.

Next biopsy should be 6 months after Oct. 17th.

We went back to clinic, got the blood infusion and next appointment scheduled then went home.  Traffic wasn't bad.

So the results of all these tests will be read to me by the doctor on February 4th. When I saw Dr. Morris today I asked about getting my line out. He said schedule it. So it will be soon! I will make a special trip in for that! But they will let me know.  I found out today they just use local anesthesia and yank it out. Yay.

Here is my happy thought for the day:

Last Day Off

Yesterday was day 100. I should have acknowledged it better.  Stacey wished me a happy 100, and I still forgot to blog about it. Tomorrow I do my day 100 testing. It's nothing I haven't been through before. I will have blood draw, ct scan, and a bone marrow biopsy.  

The biopsy consists of jamming a needle through bone in my back at my pelvis and pulling out fluid as well as a marrow sample. It's not as bad as it sounds. It's not as bad as a lumbar puncture with chemo. That one had some wicked side effects like terrible headaches. The biopsy leaves a tender spot for about 24 hours. Unless it gets infected. Then it is tender until it clears up. Had that one time. Still have a target shaped scar.

There were no appointments available in the clinic, so I have to go to the hospital for the biopsy.  I got the call from radiology to prescreen me. They said no food after midnight. I was confused. She said they put me under anesthesia for the biopsy. That's a first. I have had 4 or 5 biopsies without being in "twilight."  Of course I told her that I was fine with just local numbing at the site. She said I can make the decision tomorrow. Then I thought about it. If they are offering it, I had better take it. So tomorrow will be my second time ever under anesthesia. Last time I had no problems, so I expect the same.

Dinner was lasagna.  Think I filled the pan full enough?

And if I am still awake, I will have a brownie as a snack.  Kent already did.

Lastly, here is my happy thought for the day.

Day 100!

We worked hard on finishing leftovers today. Tomorrow will be lasagna day.

I got a long distance care package with gingerbread and sugar martinis! I am going to enjoy the heck out of those! Thanks, Bev! (Love the case, too!)

I also had a visitor. Sandy came over bearing gifts. Thank you! One of them was from the Bunco Babes writing uplifting notes. How sweet! So we will post a note each day.

I tried to do some catch up work for my real job. Unfortunately, I am unable to do the required quarterly training while out on disability. I will have plenty of catch up to do when I get my job back.

But no sense worrying about it.  It will be a while.

Saturday

Today I rode up to the airport to deliver Mom to her flight.  She got home with no drama. Good.

Our friend, Dave, has a full blown cold, so we can't see him for a while.

I did have a visitor today. Kerri brought over home made soup, which was delicious! Thank you! 

I almost had two bowls, but I restrained myself. It was very hearty, and warm, and filled with love.

Speaking of, Kerri got to see her love, Dexter.  He is a special boy. Kerri was the first to notice his super powers.  He has watched over me ever since I got sick. Even before I knew I was sick he was comforting me by laying on me.

Now he doesn't lay on me as much. I snapped this photo quickly, and just a moment later, he went to lie on the floor. We will take that as a very good sign. Even before I get confirmation from the doctors, Dexter is telling me I am healing well, and his services aren't needed as much. After dinner, he napped next to me. I got the butt side.

We watched a movie called Mirror Mirror. Cute.

One more outing, then bed.

Rainy Day

Rainy day and nothing got done. That's just how it goes.  There was 3 meals and snacks. I did squats and calf lifts, but no walk. I have lost a lot of muscle mass, but I will get it back. When I get my line out, I can start lifting.

The dogs entertained themselves well inside the house by playing in the morning and again in the evening. I could watch them all day long. We did go out, but they didn't want to stay outside long. I expect that of princess AnnieBug, but not Dexter.  The neighbor dogs were inside, so Chip had nothing to bark at. Thank goodness. 

Hmmmm..... What else? I'm telling you, no news is good news. I would rather be at home bored, than stuck at clinic. Tuesday will be a very long day, so I will enjoy this time at home.

Tomorrow Mom flies back to St. Louis. I may ride to the airport to drop her off, but I can't leave the car. I really can't be in public. I think the car will be a safe bubble.

It's all about staying healthy and healing. That's my job.

Starting To Turn

1/22/15

It's starting to turn into January. It's getting more overcast and chilly.

So we turned to homemade soup and bread.

We did get in a walk today. We had to go pick up Dexter from his play date with Shelby, the neighbors' goldendoodle. They had to get the play date in before the rain comes. Tonight. Here we go... Wet paws again.

All in all, another good day.

Another Gorgeous Day

1/21/15

Even though it started off cool, it warmed up nicely and was very sunny.

Mom started the day by doing my grocery shopping. 

Then she took me to fill a prescription. lots of drama surrounding that one.  It was my 3rd attempt at getting it filled. I finally got it at Walgreens on Jonesboro Rd. The pharmacist could not have been more helpful and patient. I was really impressed. The best part was they have a drive through so my health was not compromised. It wasn't quick, but what else do we have to do.

After that, we went to the Dollar Store for a few things, then home.

Mom and I took the dogs for a nice long walk. Kent was too busy. It's supposed to get colder this week, so he is against the oncoming normal cold temps.  It is January. It's not supposed to be 63, but we love it.

Dinner was pulled pork sandwiches and roasted cauliflower. We will have cocoa Krispy treats for dessert.

All in all, a pretty good day.

Up!

My numbers were up at clinic today. It really takes a load off. My white blood cells took a jump from 3.9 to 4.4.  That's the one that takes the longest to come up. Exciting. The red was slightly down, but I had gotten an infusion boost, so now it's leveling off. Plateletes are up. Magnesium stayed the same at 1.5, but potassium was slightly up, but within normal range.

I was just about finished with my liter of fluids when I checked my schedule for next week. At the top of the email was pulmonary testing at 1030 today. Oops. It was 1045. I called and told them I was on my way. I got that done and went back to clinic for flushes, a bandage change and my next appointment, which is Tuesday the 27th.

On Tuesday, I will get a ct scan and a bone marrow biopsy and about 19 vials of blood pulled.  This will be the day 100 testing (on day 102). Results will be in February 4th. Hopefully it will be very good news: transplant took hold completely, cured the leukemia, and I can begin coming off the prograf. Of course, that's pretty much unrealistic. Tapering off is supposed to begin on day 180.

Other hopes are getting my line pulled sooner than later. But I am sure it will be after the results on the 4th. It can't happen soon enough, even though it means getting poked in the arm each clinic day. I will take it in exchange for a real shower.

Mom made it in town just fine. I gave her the night off and made dinner. Ok... I ordered pizza. It was yummy. I am still trying to gain weight. Within reason. Mostly trying to put on muscle mass, and eat 3 squares a day. Today was splurge dinner. Not the healthiest, I know.  We will make up for it. After the leftovers are gone.

So, no work for a week, unless I feel anemic and need blood. The I just have to call them and go in and get tested. As always, if I spike a fever, get a cold or flu, or anything else bad comes up, I have to call in and probably get admitted to the hospital. That's the last thing I want. That's the why I have to stay away from crowds. For just a while longer....

Getting Out

What a gorgeous day for a walk. The week's forecast is for more nice days. That's good since Mom is coming tomorrow.

On our walk we saw the Bercegays, Krea, Perkins, Scroggs, Bobby and Aaron. Kind of fun to see people. But we didn't see them all at once, so I wasn't in a crowd. That's still not allowed, and everyone was healthy.

Other than that, I did some busy work. That's it for the day.

Oh! I got to enjoy the dogs playing. AnnieBug and Chip have turned into dogs: they play and chew on toys. At one point each of the three dogs had a toy. AnnieBug and Dexter even tried to play tug o war. She is starting to understand. We will see. Hey, as long as she leaves our shoes alone, I am happy.

Tomorrow is clinic. Wish me luck for higher numbers and a short visit!

Sunday Funday

I had a visitor today. Linda P stopped by for a short visit and we caught up

You know how bored I am when an exciting day is cleaning out another closet. How many sweaters and tshirts and turtlenecks does one person need? Apparently all of them, since I couldn't bring myself to donate much. But hey... I have the room, I do wear them, and it will keep me from buying more. (When I can get out shopping...) I found two turtlenecks with the tags still on them. I paid 80 cents each for them. I used to find good deals off season.

Organizing took up most of the day, then we went for a walk with dogs. We saw Linda C and Carol on our walk. Yay! More people! If the wind wasn't there, it would have been perfect weather.

Tomorrow is my last day off. I go to "work" on Tuesday. I feel fine, so let's hope the numbers are up.

Just Another Saturday

We puttered around the house today. Nothing spectacular.

It was supposed to be quite warm, but I couldn't shed big pink. We had a nice play date with the neighbor puppy, Penny, and her Aunt Patches.

I wanted to take the dogs for a walk, but my chief pooper scooper was not available.  I saw him for dinner and a movie. I made green curry. It's always better the second day.

Maybe tomorrow I will have to make brownies or something sweet.  I don't go to clinic, so maybe I will have a cup of coffee in the morning. Just one. I read it depletes magnesium. I will have a chance to rebuild before Tuesday.

That's it for today. Happy weekend.

Good Evening

Exciting news today. My skin is finally healing from the radiation. What looked like dirt on my neck and chest was actually damaged skin. Today I had finally grown enough healthy skin under the dead, that I could scrub it off with a washcloth. Ahhh..... Relief. And progress!

It's a great day to be outside with a fur coat. The dogs enjoyed some good time out there, but I wasn't going to stay out there too long.  Here is my punishment.

I don't know how, AnnieBug got a red head. What was she doing?

I finally got brave and tried the nail polish Linda sent with the New Year's basket. It's cool and very sparkly. Thank you, Linda!

I went shopping today.

Thank you for the GC, Melissa!

This evening we went over to the Hamiltons for dinner. The it's great to get out! We had Greek pizza on the grill and a great night.  Thank you Hamiltons!

Better Numbers

Today's numbers are better. My creatinine was back to normal (for me on prograf) at 1.3. White blood cells are holding and due to the blood infusion on Tuesday, red blood was up. Magnesium is up to 1.5 so I will keep eating the beans and pumpkin seeds.

We decided to try once a week on Tuesday, and if the creatinine spikes to 1.7 again, we will have to add another appointment.

Tuesday they did a test to see if my body is breaking down red blood cells. The results today say no. Phew. The doctor said since my donor was a different blood type, it could take 60 days to 6 months to fully take. Come on! I was A+ and Ed is A- so I wouldn't think it was that much of a change. I guess it really is, though. But now I am A- too so it's working.

They pulled blood for a chimerism test. Results in a week. Last one was 100/76 percent engrafted. All we need is a little higher. We really want 100/100, of course.

Be careful what you wish for. Annie is becoming more of a dog. Yay! With it comes playing with toys. However, I forgot to tell her shoes are not toys. She got my boot. I think it adds character, but now it doesn't zip.

Hair update:

A Clean Cabinet

This was a day off. I got lots of office work done then tackled the mess of a cabinet.

Before:

My helper who is not in the way at all.

After:

Trust me. It's a lot better. I have a bag for Goodwill and a large bag of treats for the shelter. I should give them the baconators, but I can't. The dogs love them so. I take one bacon strip and split it for 3 dogs. It's not too much, right?

We got some sad news today. One of our former foster dogs had passed away. He had 8 1/2 wonderful years with his adoptive family, which is never enough. He was lucky to find them. He is survived by his "sister," another Sheltie Rescue of GA dog.

Bummed, But Then...

Long clinic today. The lab results revealed my numbers are lower still. Except for creatinine. It's up and that's bad.

I spoke to the doctor and told him I was really bummed about my numbers. He blames the medicines I am on, and is not concerned, since the white blood cells have been hanging out at 4 or 5. Today was 3.9. That's not a 4.  He will look at the prograf level checked today, and adjust my pills if needed.

My magnesium is 1.4. So not over magnesiumed. Without trying at all I was 1.3. But I will continue to try.

With my creatinine level at 1.7, they decided to give me fluids and bring me back Thursday. Bummer. 9 am appointment. I will ride in with Buffy anyway and just wait around 2 hours. It's either that or sit in traffic 2 hours.

Also, my hemocrit was 26.3, meaning I needed a unit of blood. I certainly didn't feel like I needed it. No shortness of breath, no fatigue. So, it took 4 hours to type and cross. Of course, the computers went down too. We contemplated waiting until Thursday, but the computers came up about 2 pm.

I got home at 3:30. No traffic. Phew.

(Thanks, Patsy, for the picture!)

Poor Kent. He worked last night, came to retrieve me, then donated plateletes while waiting.

Poor dogs. All alone. Thanks to Dave, they got out at noon.

I gave them some treats since they had breakfast just before 6 am. In giving treats, I found out Dex is lazy on his commands. Time for remedial. Yay. I have a job!

We had a nice after dinner show. They all played together.

Tonight we will find a movie and just chill. Oooooo..... Popcorn. Haven't had that in months. After Kent's violin lesson.

Until then, I will start into my new book. Thank you, David! It's just what I needed after the day I had!

Lastly, remember my sister's certified mail from Atlanta Blood Services? Just a letter. Bummer.

Over Magnesiumed??

Probably not too much, but I am trying. The foods I have been eating have been high in potassium and I did overshoot on that front because I wasn't paying attention  Here is the highlight of my day:

Dave brought me a giant bag of pumpkin seeds/pepitas.  (Yay! No salt!). Thank you, Dave!! It must be 5 pounds. This is the best source of magnesium, and low in potassium. 

The other foods high in magnesium are navy beans and artichokes. So, I made roasted some artichokes and made a giant pot of ham and bean soup. I will do better with the artichokes next time. They are a bit scorched.

No photo of the soup. Hmmmm... Maybe tomorrow. But really, it just looked like soup.

Today was a dreary day. Very foggy and a little soggy.

So I took the opportunity to organize a closet. Anyone need any empty pill bottles? I have an insane amount.  Hi. I'm Jeanel and I'm a horder.  We have a lot of closets that need help. I should do one a day. But not tomorrow. I have clinic. (Lame excuse!)

My sister has a "hold for signature" package waiting for her at the post office. It is from Atlanta Blood Services. I hope it's because she won a contest. Could be cool!  I will let you know.

Now... One more outing for the soggy paw club.

Lazy Sunday

I was semi productive for about 2hours today. The rest was trying to figure out what to do. 

I sent Kent to the grocery store.  Still no pumpkin seeds. But I got Navy beans.  Those are high in magnesium. (And low in potassium!). I'll make those tomorrow when I have all day to cook them. Hopefully they will turn out well. I have not had good luck in the past. I guess I have some homework to do tonight.

One highlight of my day was doggie play time. It lasted over an hour.  

Kent went to work. It's so sweet how worried he is leaving me alone. I have plenty of neighbors who can rush me to the hospital. It won't be needed. Maybe we shouldn't have watched that movie last night about the cancer patient. Oops. It was Sweet November. By the time I realized she had cancer and stopped treatments, it was too late to turn it. Oh well.

And I have pretty good health. At least on the way to being cured. We will know more after the day 100 testing.

Big Pink Goes For A Ride

We have a friend with a collection of fun cars: a viper, a cobra, and this.

A 2009 Ferrari F430. After the owner gave Kent a check out, I got a ride. Too bad I am not allowed to drive. This car really scoots!

The rest of the day paled in comparison. Just hanging around, picking up a little and doing laundry.

Even though kent stayed in bed until 9:40, he got everything done in the hangar. Amazing since he even went out to lunch and drove the Ferrari. 

It Worked

Clinic was busy today. Not only was it a 1 pm appt, but they were full. So I had to wait in the lobby for a chair to open up.  Our ride home was square in Atlanta traffic on a Friday. Luckily Dave is good company and the time went by quickly. Thanks for the ride!

Next week I am down to one visit on Tuesday only. I asked about getting fluids, and my P.A. agreed that we can try no fluids. That's great news since it will make my visit about 1 hour long.  The important thing is to keep eating magnesium rich foods. The lab results today showed I had high potassium, so I have to avoid those foods.  Luckily I have a list.

In consulting the list, I found the culprit. Spinach. I have been sautéing a handful for dinner, and adding some to eggs in the morning. Every day. Oops. Got rid of that. I have a fine tolerance in blood chemistry, and I have to be aware of what I eat. What a chore.

Jill and Jim made lasagna for us with bread and two types of dessert. Yum! Thank you guys! Kent added some wine and here is the result. Food coma at 8 pm. Dexter is cheating on me. Maybe he knows I am ok, and Kent needed attention.

So, I am really looking forward to once a week. My appointment is 7:15 am on Tuesday, so I will ask Buffy for a ride in.  Then when Kent gets done with his trip, he can pick me up. Perfect!

The thing I will need to do is drink lots of water each day. Check. Already doing that. The second thing is I will need to flush my own lines with saline, then heparin, to be sure they keep working. It's a simple screw on syringe and push the pre measured amount in. Easy. Well worth not coming in for an office visit.

My numbers were slightly up except for the white blood cells. I'm sad about that, but still, nothing to do about it. (I thought eating some leafy greens would help. Again, oops!) All I can do is concentrate on the magnesium. More nuts, artichokes, and avocados. Mmmm....

It's Big Pink Cold

Big pink is my winter coat. It's an 3/4 length LL Bean with wind check rated to way below zero. It's not glamorous or stylish, but it keeps me warm and makes me think it's not that cold out.

But it is cold out there. Well... Cold for us.  There are a lot more areas of the US colder than Georgia.  It's all what you get used to.

I had a visitor today. Dave came over and had a cup of tea after running some errands for us. Thanks, Dave.

No other big news. It's late and not much to report. No news is good news.

Road Trip

We went to Birmingham today. Kent bought some airplane pieces and we had to pick them up.

By we, I mean everyone.

Chip found a Frito under the seat. It was the highlight of his trip. No one, except me, napped. Since we left at 6:30 am, I was undercooked and took about an hour nap. It was about a 3 hour drive, hour load up, and 3 hours back. I was just so relieved we made the round trip without incident. I worry about the van breaking down. It's no Spring chicken. But we made it! Thank goodness for $2 gas prices!

When we got home the dogs zoomed the yard a bit. Then they went down for their naps.

Then I got the best phone call. Glenda had made some homemade soup and brought it over with all the trimmings and treats for the dogs. (Thank you! It was delicious!!)

Now we huddle inside trying to stay warm. Very windy tonight and cold. Then it will just be cold the next few days.  Maybe we will play ball in the house. Or maybe just attack the vacuum cleaner. That's always fun.

That's my Dexter. (Except he always comes to me.)

Good Enough

Clinic wasn't super long today. Just got fluids. My numbers are still not as high as they have been. I don't get it. Why?

And no one is worried but me. I know there is nothing I can do, so I trust that I am doing ok.  I feel good.  

We went for a walk today. A nice long one.  It was somewhat chilly in the wind, but mostly a nice walk. That's the last one for a while, since I refuse to go when the arctic blast gets here. Tomorrow and Thursday will be mostly inside days.  We should be back in the fifties by Friday and then rain over the weekend. We will walk when we can.

I have clinic on Friday at 1. Then the next one is Tuesday. I was told next week I will be down to Tuesdays only. Just one day a week. Yay. Maybe we can skip the fluids. Obviously I am drinking enough to keep my kidneys lubricated 5 days a week (soon to be 6). Is sitting there captive for 4 hours really necessary?? I will ask on Friday.

Nothing New

I guess no news is good news.  I have clinic tomorrow.  I really hope my numbers are up and we can see some upward trend.  Today is day 80.  I'm nervously awaiting day 100. I hope numbers will be good enough then to get my line removed.  

I doubt they will remove it if I will still need blood or plateletes or magnesium.  Maybe I had better have someone buy some pumpkin seeds. Unfortunately, Linda just went to the store for me. (Thank you!) Maybe next time.

So far I have been lucky not to get sick. Here we are in January in the middle of flu season. Lucky lucky lucky.

It's been kind of warm too. I know the cold is coming Thursday. I hope we don't have any snow or ice. It literally shuts down the city. We can't get caught in traffic for 36 hours like some people did last year.

The hardest part of my day is planning eating around pills. I cannot eat 2 hours before and 1 hour after taking pills. It has to do with how the prograf is absorbed.  Must be consistent. So dinner is 6 pm, pills are 8 pm, and snack is sometime after 9 pm.  Usually 10 pm, and asleep at 11 pm.  The morning is easy. Pills at 8 am, breakfast after 9 am. So I have to be sure to bring something to clinic tomorrow both for breakfast and lunch.

I had better go get that ready.