More Magnesium

I didn't need an infusion, but it was close. I will be taking 3 magnesium pills three times a day. Hopefully that will keep me level and I won't need infusions. Stoopid prograf.

I am on day 44. I can't wait until the prograf is tapered off or stopped. That is keeping my immune system down and causing all my discomfort. And it is necessary.  I am ready to move on, to be well.  It will be a while. For now I just juggle symptoms and do whatever I can to make myself comfortable.

I am sure everyone around me feels the same. There are many patients here in the same boat. It's interesting to hear their stories.  One lady, quite a bit older than me, is a rock. (Her husband tells a different story.) Everyone has something going on.  My biggest job is to eat and drink. That's hard enough. I can ride my bike or walk to problem, but nothing sounds good to eat. Bummer. If I push liquids, I get an upset tummy.

My tongue is better.  They gave me special mouthwash. I had a candy, so it looks red.

Dr. Holland saw me today. He says everything looks wonderful and my appetite will come back this month. Yay. New taste buds for Christmas. Also important to stay active. I am. 

Numbers are good: wbc 6.4, hct 28.3, plateletes 151 (normal!), ANC 4.55, CRE 1.3

I am also very much looking forward to getting this line out and not worry about showers. 

There is a lot to look forward to. 

No Headache

I didn't have my Pibb today, but haven't gotten a headache ... yet.

No clinic today.  I relaxed a bit and got some more organizing done. It's amazing how many random bills we have stuffed away and don't know where to file them. I guess I have to make a file called other.  Yah...  That won't be a mess.

I got a nice gift in the mail today. #5 the last installment of happy songs.  Very eclectic and fun.  Thank you, Dave! Love the card, too!

No nap needed today. I guess that's good. The dogs napped, of course.

I have been drinking a lot of hot tea, even though it's about 60 outside. It's nice not to freeze when you head out.

That's all the news fit to print today.

Short Post

I have a headache.  I guess I am caffeine addicted.  I forgot my afternoon Mr. Pibb. Ouch.

Special thanks to Darlene.  She drove me up, donated plateletes for the 9 th time, and brought me home.

My numbers are fine and I am keeping my every other day clinic.

Now, back lot bed.

Happy Thanksgiving!

It's a great day here. I hope you are enjoying who you are with and what you are doing. Many of my friends are working, like me.  I am working on getting better.  If you are with family and friends, you are extra lucky.

Here are a couple of my Wehner family photos. Not everyone is pictured, but it's special just the same. We always had Thanksgiving at Grandma and Grandpa Wehner's house.

50th anniversary

Grandma's 90th

Thanks to Aaron and his family for the smoked turkey.

I had to take a nap after that.

Thn my day consisted of trying to drink water and conserve energy.  I got to video chat with my family for a bit. There is a lot going on over there! Ed was missing, but expected home by 6.

Kent came home and we had dinner. Darlene brought us a giant care package from Linda's.  I had a little of everything. Delish.  We even have some more left over for tomorrow. We will have it all finished by then.  I can't have leftovers more than 24 hours after being made. It's a food safety rule. (But I seriously doubt mold will grow in that short of time...)

I hope you had an awesome day, even if you just sat around like I did.

Happy gobble gobble.

Am I Crazy?

Don't answer that. I am kind of stir crazy, but that's nothing new. I have been running around the house doing stuff, now I am thoroughly exhausted.  Even though I did nap today, I will be ready for bed. I have to wait for Kent to get home so we can have some pumpkin pie. ( he went to a neighbor's )

My brother is safe in another part of the county, not ferguson. He has 12 hour days and no time off. The only reason he would go to ferguson is if it gets really bad. Oh. Great.

I have been well taken care of for tomorrow, Thanksgiving.  The Sims are smoking a turkey and are sharing some with me for lunch.  Linda is having her "family +" dinner and will have Darlene send me a plate.  Well. That appetite had better kick in very quickly!!

Today ok eating wise.  I was waiting for Kent to come in and share an apple, but he was working in the hangar or with clients all day.  Thank you Beverly for the monster apples!

So for today I had a drink for breakfast, soup for lunch, soda and crack chex for snack, and tuna casserole for dinner. I didn't think it was a good idea to have tuna, but it was a quick protein. It actually turned out yummy. Yes... That makes me crazy. The "recipe" is rice, tuna, velveeta, peas and some pepper and Italian seasoning all microwaved together. I am surprised I liked it. Tomorrow I will do better with drinking.

We had a nice weather day. I went out a couple of times and enjoyed the fresh air. It's not quite cold yet. But in 2 days it will be the Christmas season.  That is in no way an invitation for cold weather.  I'm just sayin'.

Kent's spot:

So, if you are headed out, be safe on the roads. It's a jungle out there.

I'm Off

Good news! I'm off till Friday.  I have to be sure to eat and drink well. Back at clinic Friday. Next week I am hoping for Monday, Wednesday, Friday.  It will be more likely to be every other day. We will know on Friday for sure.  I know I haven't updated the sign up sheet for drivers.its hard to do it if you don't know what it will be. So, I will put up M, W, F mad hope for the best.

Today's clinic went well enough. I did take 2 ltrs of fluid and magnesium. I am set for 2 days off.  Numbers are up, fluctuating, but up. I learned the chimerism report was expected to be 50/50. And I got 100 on the myeloid line and 70 on the lymphoid line. Even better. 

My energy level and appetite are coming up. Yay.

Our family is worried about my brother, Ed. He is a St. Louis County police officer. That means he could be deployed to Ferguson MO to deal with rioters.  Let's hope not.

I got gifted today. Thank you, Glenda.

New slippers. (I got caught wearing plain white socks. How embarrassing!) Kent and the dogs got treats too.  (dog treats and crack chex mix) Yum.  

Getting There

I got up and rode the bike, but also walked the dogs. Kent helped. That was a bunch for me. But still didn't nap.

I am thinking I turned the corner. I ate well, and drank well. Tomorrow is the day I find out if I can have two days off. Ooooo..... So hopeful.

Look at my tongue.

It has a white covering all over it.  Gross. I can't brush it because of my gag reflex. So I am using hydrogen peroxide 3 times a day. Hopefully it will remove the film (or dead taste buds or whatever it is).  No wonder I am not hungry. In addition, my constant complaint is my olfactory senses are in overdrive. Even water smells bad.

Ok enough about me.

Tonight we are thinking about my family and friends in St. Louis. The Grand Jury is announcing whether or not a police officer will be indicted in the shooting of a prisoner he arrested. Hopefully the "protesters" will behave and not create havoc.

The Results Are In

Today I was given the results of the transplant test.

They measure two categories. In one category I had 100% engraftment, the other was 70%. Both were very good numbers. Nothing to worry about.

I will have another test on day 60, and again on day 100 after transplant. 

The rest of the numbers were good, except creatinine, which measures kidney function. It was 1.5 and normal is 1.0.  Again, nothing to worry about. It is caused by the drugs, so my prograf was reduced. Phew.  No mag needed today.

My next appt is Tuesday.  If I do well, I may be off till Friday. But more likely in on Wednesday or Thursday for fluids. The clinic is closed Thursday for some odd reason, so I would report to the infusion center.  

We had some rain today. Dave took me in then home to nap for his work trip.  What a trooper. Thank you.  My rock came for me, then went off to work for the night.  But not before we went to the basement for a tornado drill. The sirens went off and I leashed ip the dogs and drug them down with me.  Kent joined us and informed us it was already passed.  Oh. At least we had a great sunset.

No, I did not stage this photo. ( but I did fake the sleeping part! )

Nighty night!

Saturday Off / Quick Summary

Hi new readers! We have a very dedicated following, so I post daily.  It's a bit much if you are starting now.

Here's a quicky summary: I started feeling weak the first of June on vacation.

I used a lot of air diving, and we thought it was weird. Two days after returning, I flew a 3 day trip. At the end of that, I called out sick and took myself to the doctor. 6 hours, and many tests later, I returned home awaiting blood results. That took about a week or week and a half. I called Mom down to take care of me. We got the blood results and got checked into the hospital the same day.

The hospital got the vomiting under control and fluids and food in me, and I got much better. Then we started treatment. I stayed in the hospital 23 days, then released to the clinic to get supervisory care.  I have had 2 other hospital stays due to a fever, and one stay for the bone marrow transplant. The transplant was harvested from my brother/hero, Ed, through a process like donating blood.

The first 28 days after my brother donated his stem cells for the transplant, I was at the clinic every day for bloodwork, fluids and whatever else I needed. The transplant is going well and no sign of "rejection" thanks to the drug prograf. 

Prograf depletes magnesium, so that's my biggest struggle. I try to eat the foods high in magnesium, but right now it's hard to eat anything.  Thanks to 4 rounds of many chemo and 8 rounds of radiation and 4 more doses of chemo, I have no hair, no appetite, and no energy. 

Today, though, I am hungry. That's huge. I think I have more energy too. Time to go take photos of dogs. I know you have seen enough of them.

Let's hope for test results tomorrow and feeling a little better.

Results Not In Yet

Chimerism:   A state in bone marrow transplantation in which bone marrow and host cells exist compatibly without signs of graft-versus-host rejection disease. We sent off the test on Monday. The results are still not in. Boo. Maybe Sunday or Tuesday. 

Sunday. I don't get the whole weekend off.  Kidneys are a bit stressed due to the medicines. Need to keep hydrated.  What I drink doesn't cover it.

The numbers: white up 8.2, Hgb 10.5, red3.62, plate 95, and 5.69 ( up), magnesium 1.2 so needed some. Then I had a flushed face since we ran it fast for my 1 pm appointment.

I had an inhaled medicine today. It is a once a month treatment to prevent pneumonia.  I had some side effects of coughing like most people do. Then I got a bronchial inhaler to open the airways. 

Got no nap,

Dexter said sorry. 

I ate a big bowl of Hamilton chicken soup. So yummy! Thank you!

Lastly, my neighbor was released today from the hospital. 

TGIF

Tomorrow is going to be good.  Normal clinic at 7, then at 1pm I have to see a pulmonary specialist at 1. They will give me medicine to help prevent pneumonia.  Good idea.

I also should have the results on how the transplant is doing. Let's hope for great.

I do think my energy is up, but tired myself out a bit today. Oops. The dogs let me have a half hour nap. Geee. Thanks.

Dinner was stuffing and ground chicken. The chicken was flavored by ketchup.  I have weird tastes.i am trying hard to eat and drink, but it's never enough. Worst part is working around the pills that I have to take on an empty stomach.

Dexter. Would love to do a black on white silhouette of each of my dogs. I will put that on my craft list. Which will be after I complete sorting 2 years of bills. Most importantly, PUTTING THEM AWAY. Later.

Fight!

Paws crossed!  Thank you for your support. Goodnight.

No changes

I am still about a 6 on the energy scale.  I did feel a solid 7.5 for a short time this afternoon. It's just hard to gain energy and do things.  But I got some energy and used it on laundry.  It's good to get something done.

Big thank you to Stephanie. She drove me round trip, donated plateletes, and got some shopping done.  I can't wait until I can shop.  It will be a while.

I am still vulnerable.  In fact friday I get some preliminary results on how much transplanted cells have taken.  I also get a respiratory medicine to prevent pneumonia.  

Numbers remain about the same.

No other news,except the end of the weekend will be warm again.

Blog written by AnnieBug with help from flat Jeanel.

Self Absorbed

I am so self absorbed and hating it.  I missed at least 2 friends' birthdays. Sorry Barbara and Kim.  Happy Birhday to you both.

I hate being unable to do much or socialize at all.  Not that the weather allows much.

The dogs and I did get out and play. It was short, but got the job done, if you know what I mean.  Dex and Chip played frisbee.  Annie even wanted to be chased. They like the cold weather.

Sorry, no photos.  I mainly tried to stay warm.

I rattled around the house a bit and didn't require a nap.  We will see what tomorrow brings.  I ate nuts and artichokes so I hope I don't need magnesium.  But if I do, that will produce a nice nap at clinic.

Neighbor Stephanie is driving tomorrow and donating plateletes.  Thank you!

I guess there really is no more news on me.

Others are having a hard time too.  Our neighbor, who fell out of a tree in June, is still in the hospital. Please consider even a tiny amount. They have big hearts, but empty pockets right now.

http://www.gofundme.com/h8accs?fb_action_ids=10203119099274162&fb_action_types=og.shares&fb_source=other_multiline&action_object_map=%5B653889441394817%5D&action_type_map=%5B%22og.shares%22%5D&action_ref_map=%5B%5D

Hope the link works.

Goodnight!

Crap WX

Dave drove me to clinic in light rain. (Thank you!) There were only 2 wrecks and traffic was light. It was amazing.

We are expecting the rain to stop and have below freezing temperatures tonight and cold days ahead. Ick. But no snow, or ice, so that's ok.

Dave appreciated the HOV lane taking me back home. We were very lucky with the ATL traffic today.

The two days off were nice, but I overdid it on Saturday, so was sure to rest well Sunday. That worked. I woke up well rested. But took a Benadryl nap at clinic and had magnesium drip.

Here is my latest batch of cards.  I appreciate the moral boost. Thank you!

And cool gifts. Thanks, Kathy.

I got home from clinic and rested a bit.  Then simmered black beans for a few hours.  Dinner is served!

But not for me for an hour.  I have to take my 8pm pills on an empty stomach.

I got good numbers today. The white blood cells are increasing on their own.  Dr. Bashey saw me at clinic today. In the hospital, we call him the "go home" doctor.  I will now call home the "stay home" doctor since he set my schedule as Monday, Wednesday, and Friday.  We will see about the weekend. 

I am thrilled!!  We have progress!

Trying

It's all such a challenge. Trying to keep on schedule and relax and not over do it.

Eating is hard. Drinking is hard. I think the key is to keep something in me.

But I am making it.

I spent some good couch time. The dogs swapped out visiting me.  

And we played a bit. They love the stuffed duckie from Annie. Dexter is so good, he lets Chip take it from him.  Good Dex.

Kent even took a turn snuggling.

What To Eat

It's a challenge. Nothing sounds good to me. I had Kent go get a job pizza to bake.  Nope. That didn't taste good.

So he ran up to Publix again in search of rice. Let's see how that goes.

It really sucks to wanting to eat. Or drink. It's a crazy thing.

Come on, when am I going to be over this hump??

I get up and out a bit and do stuff around here, but other than that I rest. I don't sleep a lot, but I try.

So sorry I haven't returned your emails or calls. I am just so tired.

Tomorrow is another day.

Weekend Off

Whew. Got great news today. I have the weekend off. Saturday and Sunday. Back at 0815 Monday. My last day off was before the transplant. Of course I go the the hospital for all the normal reasons: fever of 100.5, chills, rigors, uncontrolled bleeding, etc.

I don't ask a lot of questions like "why?" So I guess my numbers just look good enough. I am amazed. And happy. Let's see if some good sleep comes since I don't have to be up at the crack of dawn.

Buffy and I had a great drive in to clinic. Coming home took much longer. Urgh. Oh well, we will get there when we get there. Fridays are always difficult.  Thank you, Buffy, for the ride. I will miss you next week!

The numbers: white 5.9, red 3.44, Hgb 9.9, plateletes 94, ANC 3.80. They are stabilizing. I did ask the doc point blank if he's happy with the numbers and he said yes.

The day is not over, but I have not thrown up and I feel pretty good.  I got pre meds for magnesium and a Benadryl nap at clinic. Then about an hour and a half nap at home, so my energy is up a little. 

The weather has turned cold. The dogs love it, we humans do not.  

I guess Fall is over. Good thing. We only had 3 pumpkin cookies left.  Thanks, Linda!!

But I promise not to do any Christmas decorating until AFTER Thanksgiving.

Lastly, I hate missing a Special event. Happy Birthday, Kim! Thanks for sharing your cookie cake!

Hmmmm.....

Dare I say I'm better? The bone pain is better. I have to take something every 6 hours to keep it under control, just like the anti nausea medications. 

But that didn't work yesterday. There was so much pain, I threw up 4 times beginning with the drive in. So sorry, Buffy. But I was prepared. I have very sturdy sick sacks. They open to hold 1 ltr. Didn't have that much, but good to know it is there if you need it. Again...sorry Buffy. 

So, that's full disclosure on yesterday. Now you understand why I wasn't so chatty yesterday.

Today is better.  White blood cells up to normal 8.2, ANC 5.80, plateletes are 110 (shooting for a normal min of 150), Hgb 10.4 (normal is 12-16), magnesium is 1.5 (normal is 1.6) CRE is 1.1 (normal is 1.0)

So nothing but fluids needed at clinic today. Let's hope the same for tomorrow.

Tomorrow I find out my schedule, like maybe a little time off. 5 times a week? Every other day? Who knows.

I ate well today. Maybe now I am turning a corner.

Thank you for your continued support!

 

Ok

Pretty sunrise. Rode in with Buffy, and home with Kent. Thank You! 

Numbers today show ANC and white cells up.  Plateletes and red cells down slightly.

Bone pain is pretty debilitating.  Just don't want to do anything. When will this be over? Soon, I hope.

No one on staff is worried. So you don't be either.

Thank you, Byrds, for the cd. I would show you the songs, but that would mean I have to get up. Don't wanna.  

Keep your paws crossed for a speedier recovery.

A boost

I got a little higher today. ANC.33 (last .28) without a NEUPOGEN boost.

Wbc holding at 1.5 and rbc 29.3.  Plateletes at 120. Mag at 1.6. Bottom line is nothing needed today except fluids. Done at 1145.

They decided to give me Something like Neupogen. Yes, bone pain. Yes, I took my tramadol.

Happy Veterns Day

Day 23

Today marks 23 days after transplant. Good news is the blood pressure is down to 115/87. Finally getting closer to normal, instead of 140/97. My numbers are: white 1.5, red 30.4, ANC .28 and Mag .9 so I need a supplement which is a 4 hr drip and premed with Benadryl and Tylenol. The PA is starting to think about Neupogen. I will feel great when my numbers come up.

I am constantly battling with nausea. I have to stay on top of my medications and on a strict schedule of taking something every 4 hours.  My experiment of no napping didn't really help with sleep last night. I only took one sleeping pill. I forgot she suggested to take 2, and be extra careful about dizziness. I think I will cool the room down a little more tonight. Hot flashes woke me up twice last night. At least. Unfortunately, I couldn't get good sleep at my 0247 wake up. Took over an hour. Then I woke up a half an hour prior to the alarm. Drat! But I feel good from the Benadryl nap at clinic this morning.

I am very frustrated my numbers aren't climbing quickly. I am looking hard for the bright side.  I came up with a) I know this is temporary b) at least I am not connected to anything 24/7 or pushing an IV pole and c) overheard a lady with some kind of cancer she had battling for 5 years. See? Could be worse.

I took my midnight and 6 am pills. Here is the rest of the day's.

I got to ride in and back with Buffy today. Thank you! Tomorrow I will go in with her and Kent will come pick me up. Let's hope for being done at 1130, like I had Sunday.

We went for a short walk and had some yard time.

 Wrong way, Chip!

There you go, but Dexter still gets the catch.

Sweet AnnieBaNannie.

My pack.

I ate well today, and celebrated with a Mr. Pibb soft drink on the way home . That is nice. 

Now bed.

More Time

Yesterday slipped away quickly. That's why it was a short post. But don't panic, I really am good. Maybe even a little better than yesterday. I will still require a nap. Tired. Always tired.

I thought I would be able to spend some time with Linda P today since was going to take me to clinic.  That didn't work. As soon as I told the doc about Don and Linda visiting him, he said it's not a good idea. She needs to be clear of the hospital for 3 days just to be sure she hasn't caught anything. Hospitals have FUNKY viruses and germs. I am so sorry, Linda.

I have the immune system of a newborn baby. Like the new Syracuse baby, Connor. Congrats! He will be compromised for a shorter duration than me, since I will be on immuno suppressing drugs until June, I think.

The physician's assistant suggested I not nap in the day to ensure a good night's sleep. So we will try that. Wish me luck!

More fun photos tomorrow.

Good

I'm good today.

Got rid of the pump. Now on oral medications.

Tired.

Mom left.

I will try to survive. Thanks, Mom. It was great care like only a Mom can give

Good night.

Ch-ch-ch-Changes

What? My teeth are moving. I am getting a gap in front.

That and no hair again. Stupid TBI (total body irradiation)

As if those are not worrying me enough, I had another restless night. Maybe the house is too warm, especially if you factor in hot flashes.  I will try 2 degrees lower tonight. Wish me luck.

Here is my "work place" where I spend 6+ hours each day.

Oh. I forgot to tell on myself yesterday. I get premedications for magnesium. It consists of 2 Tylenol and a Benadryl injection. The Benadryl makes me sleep.  At nearly the end of my time I still hadn't been seen by the mid level or doctor. My nurse, Selena called and checked. I actually was seen by both. I have absolutely no recollection of either.  Oh dear, what did I say in my foggy state??

Today's numbers: plateletes 106 (normal is 150-450), white blood cells holding at 1.2 (normal 4.8), red at 3.65 (normal 4.2), and ANC dropped to .39 (normal 1.7).

Since the plateletes are going strong, we are sure the engraftment is doing well.  The white blood cells are just slow. We are not worried.

I am starting levoquin for extra antibiotic help. And I must stay from those sick, or those who are around someone sick. Sorry.

Dinner was provided by our favorite bachelor chef / neighbor. Thank you so much!!

We made short work of that poor bird. Delicious!