6th LP

I went to bed early to be well rested for today's lumbar puncture with chemo.

At 0230 I woke and couldn't get back to sleep until 4. 

When my alarm went off at 5 am, I was having a dream. In my dream I was almost done with the LP procedure.

Rude wake up call, and very disappointing that I had the whole thing ahead of me still.

Mom would love to be in the room for the procedure. Luckily it's not allowed. I would be a nervous wreck. I find all these procedures gross I do not want to know anything about them. Just tell me when it's done. Mom is the polar opposite.

I had a muscle that seized up during the procedure. Debbie said it was a normal body reaction. It took a few tries to get the needle deep enough. And then it worked just fine to extract spinal fluid and then inject chemo.

When the needle came out, I felt it in my foot. That was new. My back was slightly tender through recovery, but real no pain.  My 2 hour flat on my back recovery went well. Now it's 24 hour "bed rest." Drinking plenty of fluids, and up the intake on caffeine.

Tomorrow is a day off, then clinic on Thursday morning for the big talk.

I found out yesterday my brother is a match to be my blood marrow donor. He met 10 out of the 10 criterium, but there are still a few more tests to do.  The big talk should tell us if we need him as a donor. (Right now he is working 16+ hour days for St. Louis County in Ferguson as a police officer... Maybe he could use a break! Imagine that.. A bone marrow transplant would be like a vacation. Sad.)

Does this eye patch make me look fat? It think I will wear it to my consultation on Thursday. Or maybe my wig. At this point it could go either way.

Annie is even having fun dressing up today.

At some time I do expect to be able to chat about non-medical related items, but it will be months away.

Until then, we look for little milestones.

Need Blood

I need blood. Luckily, I am at the clinic and I hear they have it here. Well... If not immediately available at the clinic, then across the hall.

How do I know I need blood? I feel like I did in mid June when I was anemic: not enough oxygen which causes me to be tired. I also know better than to do strenuous activities and wear myself out.

Today I got a liter of fluids since I am slightly dehydrated. I tried to bargain for only 500ml, but that didn't work. Maybe I will only get charged for a small bag!

How cheap are we? 

We WON'T pay for parking, and the clinic does not validate. So, Kent went to donate platelets. They validate. There. Saved $4 for the day. That will make a difference.

Look out, Mary, he is catching up to you! I couldn't get him to stop at the good Costco, though! I will try next time.

Ok... For those of you who can't read between the lines, this is dripping with sarcasm. I guess I am feeling spunky. But remember I write this as is... No holds barred.

We do believe in donating platelets. They are only good for 5 days and cannot be frozen. Kent can donate again in 8 days. Whole blood is a different story. It can be frozen (up to 10 years) and saved for use. In addition, a donor can only donate every 56 days. Plateletes are always in need, and Kent happy to help.

Tomorrow I get a spinal tap. Wish me luck!

Happy Birthday, Kent

Kent worked his second flight of three last night. This morning he got home and took a nap and played the violin and guitar. I think he needed a break. He has been going at break-neck speeds.

The problem is he doesn't know how to say no. He tries to do too much in a day.

I, however, do not try to do too much.  I always was pretty good at listening to my body and taking what I needed. Nap? Sure, sleep. Feeling good? Walk. Bored? Complain.  It's pretty simple.

My big job is to rest, eat, drink. I am so well hydrated. I will leave it at that.  Maybe I will be a better cook since I have so much time at home. I attempted a beef stew this evening. Attempted. It wasn't what I would call flavorful. It was ...   ummm... Comfort food. The gravy came out very well and paired nicely with the bread. Oh well. So much for a yummy birthday dinner. And guess who didn't complain. What a great guy. I am a lucky girl.

This is what's left of the Birthday Brownies. Thanks, Mary! He really enjoyed them.

Tomorrow is clinic in the afternoon. Mom arrives again for a visit and we have another lumbar puncture with chemo on Tuesday. Maybe Wednesday will be a day off. Then Thursday is an early morning meeting with the doctor to discuss our long term treatment plan. I promise I will let you know what I know. The options are continue with chemo only or chemo coupled with a bone marrow transplant. We will see. 

Lastly, I know you are dying to know the outcome of the paint choice. It is Cocoa for the toes and Fairy Dust for the tops.

(I love boring days!) Good night!

This was not a staged photo. I was lying down to type and he parked himself on me. Best medicine ever.

Helpless?

Helpless??  I think not.

Just had to start with a giggle.

Dexter has decided to help. He is trying to get Kent out to work in the shop. He is bringing him his shoes. Much better than a bird, in my opinion.

So today is kind of a day of rest.  I am coming down off the steroids, and my numbers are falling. The combination makes for a quiet day.  

Luckily, Kent was super busy, and the dogs love to just hang.  They did get out and play, but I didn't. And that's ok and expected. There is really nothing to do either today or tomorrow.

We had lunch with the Hamiltons. Thanks, guys! It's nice you can come give me a taste of the outside world!

Little Livi got admitted for a fever. I feel for her. I am doing everything I know how to do to stay clean and safe. I am sure they are doing the same, but not everything can be controlled.

https://www.facebook.com/pages/Love-For-Livi/352050968275822

It is so sad when a child gets sick, but I know she is getting the best care possible. We are lucky we aren't trying to get through leukemia 20 years ago.

In other news, our neighbor Don, is still in the hospital for his broken arm. I think he is working on day 20 or so. Since he fell from a tree and ground his coumpound fractured wrist in the dirt, it takes a long time to kill the infection. Hopefully he will be able to come home Monday. Linda will be a great nurse!

So... Although there is not much to report medically today, I am thankful for a boring, catch up day.

Early Mornings

Enough of the early mornings. I never was a morning person, but sheesh. Yesterday I got to clinic and napped a bit. Poor Buffy had a full day of work.

Today I gave up and napped in the car and let Kent have some silence. Here he is all bright-eyed and bushy-tailed.

Annoying, huh? But I have my cup of coffee and trying to wake up.

Bloodwork came back ok today. I am a little low on potassium and protein. So hopefully Kent will get me some groceries tomorrow. He has a list, but may need a reminder. It will be a good excuse to send him out for lunch if he doesn't stop on his way home from in the morning.

I can't tell you how full the days have been: wake, meds, 1 hr drive, clinic, drive home, meds, nap?, drink 3 ltrs of water, meds, dogs, make 3 meals and snacks (since I can't go out to eat) fold laundry, put away clean dishes, and hopefully 2 hrs of TV (the Chew {need a new antenna to get that one} and Rachael Ray). What the heck? It's just living and looks easy on paper, but really isn't.  Anymore.

I did get 8 hrs of sleep last night, first time in a while, and that's not even trying to be social. You know how much I miss that. Decking next summer for sure.

Oh well. It's my full time job, so nothing else matters.  Except keep my spirits up. THAT'S the easy job. I am so lucky to keep getting emails and snail mail every day. Every day, every day. The notes range from inspirational to hilarious. Thank you!

So now Kent has gone to work and I can concentrate on me. I will begin step one in "me time" and remove the nail polish and try another color. Taupe? Purple? Both? The sky is the limit.

So... I have the weekend off (unless I get anemic or spike a fever) then labs, blood, and platelets on Monday. Out patient lumbar puncture on Tuesday. That will be 6 of 8. Almonst done.

Found out there is another friend with a friend who was recently diagnosed with leukemia. 40 yo husband, father. Hopefully I can help him in some way. (HI if you are reading this!)

Hmmm. Dexter tried to bring me a gift. Call me silly, but I don't think it's sanitary enough for me. Sorry, Dex. I do appreciate your skills and the wonderful obedience to the "Drop it! Come!" commands.

I am hoping that is all the news for today. I certainly think it's enough. Good night!

Quick Clinic

Very quick clinic today. 8 am to 1045. That includes a pint of blood and a chemo and Mensa fluid change for my BFF. This should be the last 24 hours crying around the fanny pack.

I am supposed to have been on bed rest from the lumbar puncture yesterday. Kinda hard to do with a clinic appt. but they have recliners, and blankets, so I snoozed a bit until it got busy.

In addition to the take home fluids, I am drinking 3 ltr of water, plus whatever coffee, tea, or juice I feel like. I do try to steer clear of caffeine and sugar. My CRE is now 1.0 which is normal people numbers - yay! The antibiotic drip probably bumped it, so we back to normal now.

Since I am getting plenty of fluids, the fat feet are back. They don't hurt, but look funny. Time to elevate.

"Put one foot in front of the other. And soon you'll be walking out the door!"

Check out this video on YouTube:  http://youtu.be/OORsz2d1H7s

It's another early clinic... So getting ready for bed.  Leave you with this thought. (Thanks, Patsy!)

Do It Now!

 Do you have a health issue you thought wasn't a big deal? I did. I was just a little tired. 

Turns out my bone marrow was comprised of 83% leukemia cells. My blood was 90% leukemia cells. I do believe I was on death's door. Literally. Had I ignored it, I probably would have been dead by June 30th. That was a wake up call for me.

Hopefully what I am going through is a wake up call for you. Turn the mirror on yourself.  What are you ignoring? What preventative medical items have you deferred? Do it! Do it now!

Although this is from United Healthcare, it think it's information is useful:  http://www.uhcpreventivecare.com

Ok?  Off my soap box...

Clinic today. My chauffeur, Buffy, brought me in again. I actually am 154 on platelets! That is up from yesterday and in the normal range. Kind of cool! But the next 3 days of chemo will take care of that quickly. Thanks to Jim, I envision Indy killing the aggressive Leukemia in with a single shot!

Creatinine was down from 1.3 to 1.1 which is a better number for the kidneys. I am super sensitive about the kidneys functioning well since they are doing such hard work filtering the anti-toxins released from destroyed leukemia cells. 

Nice collection of arm bands going. Feels like airshow days.  My red blood cells are beginning to tank, so I will need blood tomowwow, but I am Typed and ready. Maybe tomorrow will be a short clinic day!

I had an expected rough night sleeping due to the steroids. Now I am on steroids and caffeine. Nice (Caffeine mitigates the side effect of "worse than a migraine" headache from the LP) Trying to sit still in my clinic chair proves to be a challenge. Must focus!

My "happy goto clinic bag" today. In addition, I am dressed in black.

Arrrrrrggggghhhhhhh!

Got a nasal lavage today. Basically a squirt of saline up the nose, then blow it out in a cup. That is to check for a virus since I had a sneeze attack at 9pm and 2:30 am. Great Air Dexter photos have a price, I guess.... But there are several workers wearing masks. Hopefully I didn't pick up a bug. Will find out tomorrow.

The LP went well. Did not get a nerve. Phew, so 2 hrs flat on my back, then released and Buffy took  me home. The rest of the 24 hours will be bed rest with bathroom priviledges. 5 LP down, 3 to go. Excited!

Can't you tell?

Bed rest it will be at clinic tomorrow. Day three tomorrow with the at home chemo bag then day 4 will be in clinic one day different chemo.

Then maybe some days off. Who knows.