My New BFF

I get to carry around a pack for up to 2 weeks.  It has a boost of injectable antibiotic because they didn't like how my biopsy site was healing. Truth be told, I think it's infected. But no one used that word. Now is not the time to mess around and "hope" it gets better. We need to get in front of this. So I have to go to clinic every other day and be sure it's the right dose.

I needed blood today. I didn't know, but that makes it a long visit. In the hospital, I don't see what happens behind the scenes.  They show up with blood and hang it.  In the clinic, they have to draw and send it off to get typed. That can take up to 4 hours. Then they order the blood and when it comes it is checked by two nurses three ways.  I guess getting it wrong would be very bad. Then it takes an hour to infuse.

I did have the opportunity to go home and come back the next day, but really? Is it worth the drive? Besides, Kent went over to Atlanta Blood Services to donate platelets so that killed a couple of hours.

At least I had a private room today. Luck of the draw.

This is my patient face.

My platelets are at 44 (normal is 150-450), and white blood cells are at .3 (normal is 4.8-10.8). So, I am at rock bottom from the chemo. Which is the goal. Kill everything off, and start to recover again. I will get help from an injectable drug called Neupogen. Self administered at home. I did my first injection today with direction from my nurse. She said I did well, but I wouldn't say it is second nature.

Again, more and more awe for my health care providers. How do they deal with chickens like me day in and day out? 

Walkie Walkie

Look! My first time making homemade sausage gravy.

Today we went for a walk with the dogs. I forgot about my discharge papers saying 24 hours of bed rest "with bathroom privileges." Does Dexxi and Annie's bathroom visits count?  Sure they do...  So it was a short walk.  I had Kent to pick up after them, and a mask in case there was any grass cutting or smoke I had to shield against.

Mostly the rest of the day I spent feeling like a caged bird.  I do have a robin nesting on my front porch, so I can watch her.

I sat outside with Kent after lunch. Not long, but enough to enjoy this stunning day with low humidity, 85 degrees and clear skies. But, I fled inside at the first sight of a sweat bee. Any cut, scrape, bug bite is an open wound and a source of infection. 

Tomorrow's bloodwork will determine my counts, but I betcha they are near zero. Meaning zero immune system.

The hair loss is continuing nicely. It is finally paying off since I am noticing less on my legs. Ha! One good thing for a girl banned from razors since June 24.

I am stuffed full of lobster Mac n Cheese.  (Thanks, Dave!) So I must say Goodnight.  Thanks for reading.

LP LP LP

We got up super early for labs since yesterday's total wasted trip to the clinic missed the PT, PTT, and INR indicators the radiology department needed.  We did the blood pull at the clinic at 0730, and decided to try to push our way into an earlier appointment.

Admissions took us early, radiology took us early.  I got gowned up, hooked up to iv fluids, took my adavan then at about 09:40 wheeled to the procedure room.  It was all going so well.  My tech did a final check of paperwork.

(Sound of screeching brakes.)

The blood work from this morning showed platelets were 48. They require 50 to do the procedure.   Yesterday my platelets were 87. That's a huge drop, but I am told it is normal for platelets to drop after the chemo I had. But come on!!!

So it's back to the Tower to get an infusion of platelets. Free ride in a wheel chair. (Hi Brian)

It takes a while to get platelets ordered, delivered and infused. All of this on an empty stomach and two cups of coffee.

Darlene checked, I did not get her exact platelets. Drat.

All the while Darlene walks back and forth with me being my Sherpa. What a trooper. She thought she would catch up on reading. Ha!

Finally I go back to radiology in the main hospital. Get gowned up, and wait to be fit into a very hectic day.  Although the adavan had worn off, I decided to press on without it. I don't know if it was a smart decision,but it worked.

This LP did not hit a nerve.  Recovery as an outpatient is a bit odd. They wheeled me to the third floor to recover flat on my back for two hours. This is me on a gurney being wheeled upstairs.

They did give me TV and a sandwich and chips and a coke.

We finally made it home 13.5 hours later. No incidents, no accidents.  I consider myself lucky!

Another Day, Another ....

Gross alert. Don't look at the bottom photo if you are squeemish .......

Just another day at the clinic. Blood draw, dressing change, wait on blood results.  Platelets have to be above 50 to do the spinal tap. They were. Drat.

I know I have to do it. Still dreading it. 

So, I have been calling it a spinal tap. What it actually is is intrathecal chemotherapy. They pull out 6cc of fluid, and put in 6cc of chemo (different kinds at different times). That's to be sure the cancer doesn't park itself in my spine or brain.

The problem is one time I had neck and shoulder pain for about 6 days. At least it wasn't a headache. I hear that's a distinct possibility too. Great.

My first and third ones went well, so who knows. If I project the schedule, I will only have 12 more after tomorrow. Yay.

And of course the clinic didn't get all the blood tests run for the procedure tomorrow, so I have to go in super early for more blood work.  Poor Darlene. Sorry you got the early shift.

I still think my PICC line is fascinating, but gross.  It doesn't hurt, but I really don't like seeing it floating out in the breeze.

So after essentially a wasted trip to the clinic, I really needed a boost.  It came in the form of a dinner party. Ahh... Just like old times. Curt and Darlene came over with an amazing dinner and silly. conversation.  Friends don't let friends stay in bitchyland for long.  It's just no fun.

At the end of the day, I am motivated to keep my eyes on the prize: get 'er done.

Caught Up

I had two sips of wine last night. It's the thought that counts! My doc said I could have a glass a week. Turns out I still don't have a taste for it. Guess that means I am still not healthy. I will listen to my body.

I got by with only one nap today.  I'm caught up on sleep, but boredom hasn't set in yet. I did get a few chores done.

I am not allowed to do any "dirty" cleaning since I am close to neutropenic low.  I have little white blood cells to fight off infection. Very soon they will be at zero. So I have to be extra careful not to be in contact with dirt or mold.

Tomorrow I start popping pills. One antibiotic, one anti fungal, and one other I forgot. They are all prepping me for the low. I have been meticulous in giving dogs medicines in the past, so I think I can remember to give myself pills. I have then set out in plain sight just in case.

I did move clean laundry to the dryer and then fold and put away. It seems like a normal day.  But what about tomorrow?

Tomorrow is a clinic appointment.  We will pull blood and get ready for a spinal tap on Tuesday.  Ugh. Would rather have a bone marrow biopsy.  No... Wait... Hate those too.

It's all necessary, I know. But I feel like whining about the process.

I have great support, though. My squeaky clean dogs are always close and keeping me company, and neighbors are checking in on me. FaceTime and Skype are lovely tools to connect too. 

So far, so good. I am thrilled I have nothing more to write about. Boring days are good days. Keep your paws crossed for no infections!

Hermit Girl

I think I am caught up on sleep now.  It's amazing how anyone can heal in the hospital. They keep you sleep deprived just doing their jobs. I try to nap at the hospital, but it's not like home.

At home I have unlimited quiet time. So, although this is a very short entry, it really is all that went on today.  Don't worry, I can stil sleep tonight thanks to Melissa and Dave and an awesome homemade chicken pot pie. I ate way too much!

Being Home Again

As Hot Rod Walt says:

"I know it's late it's 4 am, sure feels good being home again.  

My dogs run to see me after I've been away....."

     "Being Home Again"   From the album Rockabilly Rodeo

      http://psychodevilles.com.       <<Our favorite local band!

I can't wait to get to see the band and get out dancing.  It will be another 5 months, I think, before I can be in a crowd so I'm glad I have all their albums. I wonder if I will spin my wig off while dancing....

So, the tech came to draw blood and she said "whoa! I can see your vein from across the room!" Yah. I have good veins.  

The doc gave me some bad news, though. He said I have to remove my toe ring. That thing has only been removed once since 1989. Yah... Things are going so well *this* is what I worry about.

So, when I get home it will be important I not do any cleaning or expose myself to hazards that will make me sick: mold, dirt, sick people.  I will be a hermit until my counts recover. That should be around August 10th. Then I am sure we will do another round of chemo.  Just when my blood cells recover, they beat them down again. Keep going, I say. Let's get this done. 

Just waiting on discharge papers. Should walk out at 2 pm.

More later....

Fat Feet

I am getting pumped with fluids. I keep telling them that I am drinking a lot of fluids to protect my kidneys, but they still need the iv of sodium bicarbonate because of the chemo.  We are at the end of chemo, so we will be ending the fluids. Whew.

Trust me, they are fat and weird feeling.  It's not uncomfortable, they just feel strange.

I can still walk, nothing is stopping me.

(Thanks Bev!)

My visitors today were Curt and Darlene. Unfortunately they caught me singing in the shower. Oops. The good thing is with no hair to wash, showers are pretty quick. Then they went to donate  - Curt's first, Darlene's second. Darlene actually produced 2 bags! Rock star! (Thanks!)

Coincidentally, I was visited by the coordinator for the Atlanta Blood Services.  I think I know who has donated on on my behalf, but she couldn't share names due to patient confidentiality.  If I missed thanking you, please forgive me!!

Medically speaking the doc is happy. We are on track for release tomorrow. BUT it is all depends on numbers. The Methotrexate must be clear of my system.

I will leave knowing home care will be a challenge.  I will be calling on neighbors to help with doctors appointments.  You have been warned!  I don't have my schedule yet, but it will probably be 2 - 3 trips to the clinic at Northside Hospital, Dunwoody, per week for the next 5 months.  The visits take an hour drive each way and about 4 - 6 hours in the clinic. So... It's an all day event. 

That's if I do long chemo. If the treatment plan includes a bone marrow transplant, I will have to be at the clinic every day for 100 days in a row.  We won't know which plan we are doing until August 21st.

I also will be giving myself Neupogen injections at home for a few days. I will learn how. This saves me from having to drive to the clinic for the sole purpose of getting a shot.  Phew!  It's amazing what you can do when you are determined.

I do have one more chemo at 5 am. Don't worry, I will sleep a little at a lime, then a lot at home. Whenever that will be.

Hair loss progressing very well. I am fitting in around here.  I have heard from many people I look good with short hair. Short? How about none? Except for the inevitable tan line, I don't mind at all.

LP Day

PIt's another lumbar puncture day which means 2 -  4 hours flat on my back afterwards. No walking. Bummed. But it worked. No migraine and the procedure did not get a nerve this time. I am very comfortable.

It's nice, though, to have a bed to come lie in for the rest of the day.  The next LP I will be at home, make the hour drive up here, do the 10 minute procedure, lie flat 2 hours, drive home, them rest. What could possibly go wrong?  I know they do these all the time, so I am sure it's safe. But still, there is some worry.

I got two transfusions today. It's expected. I was also put omfliids. I am starting to swell up again. So I got a dose of Lasix. I wish they would just decrease the fluids and let me drink to be hydrated. I will bring it up at rounds tomorrow. We have to protect the kidneys.

Other news about chemo is nothing new. I haven't felt a thing. No adverse side effects, so keep all those good wishes coming my way. It's working.

This chemo round I am on Methotrexate and Cytarabine.  They have so much chemo in my it's coming out of my eyes. No... NOT Literally. 

I am on steroids (Methylprednisolone) so my appetite is ramped up. I also expect to be a spaz and not sleep well. Just a temporary side effect. Glucose testing is back. Yuk. I don't enjoy the pinprick,but it doesn't hurt. I the the worst part is picking the finger to take the hit. And then the snap sound of the needle. Just annoying.

They also have to check blood peripherally for the chemo level. I registered 21. Which was over the limit.  So I got stuck again an hour later. I was a 11.8. No need to change the protocol. Onward.

Midnight labs. 3-4 am meds and vitals, weigh in,6 am meds, 0730 shift change , 8 am vitals and weigh in, 0820 breakfast, then rounds begin and a full day of staff visits and maybe a fun guest!  

Today Dave, Charlie and Bev came. Bev tried to donate, but they couldn't find a vein. Charlie, Mark and Joan all donated platelets, Wow! That makes twice for each of them. Super heroes!! Thanks, guys!

1. Xena Warrior Princess 

Back In The Hospital

They didn't save my old room, but I am very close. I am in Room 456.  Outside the window the "king and queen" buildings are just a little right of center, but the rest is the same.  It's  as if I never left. But I know I was home since I have dog hair on me. 

I heard today there is one patient who has been here since March. Ouch. See? It could be worse.

I get a giggle out of the staff.  They don't recognize me at first since I am nearly bald. I forget they haven't seen my new haircut.  (I actually forget I HAVE a new haircut.)

Mom and I baked two chocolate cakes for the staff. One for day shift and one for night shift. It went over very well so far.

I had a dressing change, chest X-ray, and started a 2 hr drip of chemo at 4 pm.  Now continuous drip for 12 hrs.  So far, so good! No adverse reactions. Paws crossed!

They are testing to my glucose. Crap. Had I known there was going to be a test I would have chosen a healthier dinner. But the pizza and brownies were darn tasty!  (Was 206 tonight instead of a normal 96)

I expect to go home on day 4. We will see. It depends on when the chemo passes through my system.

This was me yesterday. Note Annie in the #1 spot, not hiding on the floor!

And then she stole my spot.  Good girl! 

(Not spoiled at all!)

I Wouldn't Say I Missed It...

Today is a good day. I get one more night at home before checking back in the hospital tomorrow for chemotherapy.

My bloodwork came back and I am at mostly normal levels now. My magnesium was off, and my white blood cell counts over recovered and are high.  Technically, I could go out for lunch and have a normal day. But I will not. It's not worth the risk of infection.

The biopsy went well today. No pain afterwards. How nice! The most annoying thing is the gigantic dressing pulling at my skin. I am pretty lucky.

They sent me home connected to a bag of fluids and a pump. It's about the size of a bottle of wine.  I can carry it like a purse and not have to do anything to it. It is preprogrammed to drip slowly now then go at a quick rate at 4 am. Of course it will start beeping at that time.

Chemotherapy

There is an "A" cycle and a "B" cycle. The first round was an A cycle.  Tomorrow is a B cycle which requires a hospital stay.  The B has different chemo drugs than I had in the past. Hopefully the side effects will not be too bad.

I expect 4 days in the hospital this time, but it depends on the chemo passing through my system before being released to home.  Then it will be 2-3 trips a week to the clinic for blood work and probably an infusion of blood and platelets

 And I must do two spinal taps in the next week and a half. Man, I hate those....

When I get home on day 4, I will be at Rock Bottom again. As far as I know, they will let me recover at home. Which means I will be severely neutropenic and susceptible to any infection.  When I told Kent this, he was concerned. As he should be. We will be very very careful and if I get a fever of 100.5, I will probably get rushed to the hospital and admitted to my 4th floor dorm.

But we don't need to worry about that right now.  I just need to rest and let them do their jobs. (We made 2 chocolate cakes to help grease the wheels!)

No news is good news

Have I told you how great Northside Hospital is? They mailed a package of cards that were sent to me, but not delivered to my room.  I had escaped too quickly.

Wow.

I don't think normal hospitals do that.  This one really has a family feel to it.

Although it's a bad hair day (thanks Paul and Teresa), it's a good day overall. I am trying to enjoy today at home because I know tomorrow we drive to the clinic. Early. Very early. Ugh. It's biopsy day which means I will be "uncomfortable" for 24 hours. I don't know what else is planned for tomorrow, but I hope it will be a short visit.

Today we organized my Tupperware, painted my nails, and we made a crockpot chicken dish for lunch. It feels like normal life.  I still have my #1 job of drinking lots of water and eating every chance I can.  My favorite today was dinner. Enchiladas (home made) delivered by Curt and Darlene with sides and DG Chocolate cake. Wow! Spoiled!  Thanks, guys!

So, it's a short "nothing going on" day.  Love it.

Buzzzzzzz

We gave me a buzz cut today.  Relief. That's the word that comes to mind. I was annoyed with all the long strands falling out and leaving a mess. (And I can tolerate a LOT of shedding!)

Exhibit A

Exhibit B

I finally got Kent to do the cut for me. He wasn't really ready to, but was a trooper.

That's the big news for the day. Other health news is the same: strong, eating well, moving well, etc..

This is big visual progress and will take some getting used to for those who have to look at me.  I have no problem with it since I rarely look in the mirror.  It just one more example of how this is more difficult for those around me than it actually is for me.  Sorry, everybody!

We will hope to get through this whole cancer treatment quickly and look back on it like the speed bump it is.

I am wondering if I should post photos of my bald head..... I think I would have a revolt if I did not include them so...

 Darlene has gifted me with a lovely wig to help me feel beautiful. Thank you!

The Clinic

Today was the first outing to the outpatient clinic.  It was in the same complex as the hospital, but in the tower across the way.  They are super nice there, too, but there is definately less privacy and many more patients.

Mom was a trooper driving me up in an unfamiliar car, just before dawn, in scary Atlanta traffic. Actually we took 75/675/285 to x28 and were right there in an hour. Easy squeezy.

I had vitals taken, weight (110# yikes!) and a blood draw. We had the picc line bandage changed and were seated awaiting results.  I got a bag of fluids started and waited to be seen.  The physicians assistant, Meagan, saw me and said I looked good.  Much better than she expected.  She don't know me, do she?  I explain I had been having some neck and shoulder pain. She wanted to see if I wanted pain meds or a muscle relaxer for it. Umm.. No thanks. But how nice that it is at my disposal.

Dr. Holland came in and as usual it was a quick visit. He explained the pain is probably due to the lumbar puncture when they got the nerve. Great. So that will be with me. A while. Hopefully not too long. It's annoying, but as long as I am in a reclined position it does not hurt.

So we were waiting for the bag of fluids to finish, and we dozed off. The nurse had to come wake me and Mom up and kick us out. No transfusion or platelets needed today.  I know that will change. I am on an up swing. It still looks like Tuesday will be another round of chemo sending, me to rock bottom again.

The hair loss is continuing at a steady rate.  I think I am ready for a comb over. Or a crew cut.

Probably the last hair shot.

Then it going to be ultra low maintenance hair do for a while.  And the dogs will have to go back and be the primary shedding beings in the house. 

Tomorrow and Sunday have nothing scheduled. Paws crossed it stays that way! I want to be bored!

A Girl Could Get Used To This

Today is a homebody day.

I am eating well, and doing well, still.  I have been checking for a fever, and have none.  No medical issues. Phew.

I have Dex and Annie to watch over me, and friends to help with everything else.

(I had to fake a nap to be sure my caregivers have some time off.)

Mom got to stil still for a few minutes.  Then Dexter ratted me out.

Annie too!

All in all it was a good day. I can't tell you how nice it is to be home.  I really do look for the silver lining but now I realize how many things in the hospital were irritating.  Just the thought of the sound of the electric hospital bed annoys me. Oh well... Don't have to worry about that.

Tomorrow is an early appt at the out patient clinic.  A quick check of my blood and bandage change on my picc line. Hopefully I won't need a transfusion or platelets and my numbers are still up.  That will make it a short visit.  

Cross them paws!

Headed Home

I just got the news this morning about my discharge today, July 16, 2014.

Coincidentally it is exactly a calendar month after the day I took myself to my regular doctor because I was a bit under the weather.  What a weird month.

I am on lock down and still can only have limited visitors, but at least it is home! I didn't have much notice. The midnight blood draw was read by my the doctor this morning, and showed .6 (up from .2 the night before.). Wow. Shock.

It Takes A Village.

There are so many things I don't know about.  I have been very far removed and the household was all up to Kent. You know, on top of his normal life and my sick life.

So when the word came down I could go home today, there was a flurry of excitement. Neighbors swarmed the house and got it hospital clean.  (Thank you Darlene, Darlene, Linda, Linda, Andrea, Kim, Nick, and Mary and Bev!) The dogs were being groomed anyway, and Beverly picked them up while Charlie and my two Sherpas came to retrieve me.

Meanwhile, Mom and Melissa were packing up my hospital room, and I was trying to remain calm. Yah. Right.

I got my marching orders and next appointment (Friday) and drugs and on my way. Of course it took all  day, but it was worth it.

I feel so lucky to be home. I don't know how long I have until the next phase of treatment and if it will require a long stay in the hospital again, or a short stay.  As I was leaving, it sounded like I would be admitted again on Tuesday for another round of chemo. Hopefully it will be a short stay.  (I told them I would like to reserve my same room, but to be honest, a change of scenery would be ok too!)

For now I will enjoy my time at home. Poor Kent and Mom have their work cut out for them. I really have become quite accustomed to being served!

Newton's 3rd Law of Motion

For every action there is an equal and opposite reaction. 

Apparently the side effect from one of my drugs has reared it's ugly head. Neupogen is an injection that will help my blood count recover. The side effect is bone pain. Although I have been on it for many days, last night I started having pulsing pain in my knees and hips. I am on pain meds and now mobile and back to "normal" hospital life.

I don't read or study what is coming next. I prefer to be surprised and react to what happens. The nurses knew this was coming. The side effects usually show up at day 15 after the start of chemo. Ta Da!  The good news is they appear as my blood counts climb. I am out of 0 and now at .2 (.5 is the minimum to go home).

Charlie and Bev came up. Charlie donated platelets and Bev has an appointment on Thursday. (Thanks!!)  They were treated to a drugged up Jeanel. I seriously felt drunk and disorientated all day, but no pain!

More good news is that the kidney doctors have released me. They are so happy with my progress that they are taking a back seat and will be consulted as needed. Yay. Very good news.

Mom and Melissa are here. Mom flew in for a couple of nights and Melissa drove down from her convention in Nashville. Wee!

In case you were wondering, I am still shedding!

Good night!

Sheddin' Like A Sheltie

Today is the start of the inevitable hair loss. It is a welcome change. It is a visual stage in my progress that tells me I have received chemo. (Secretly I have been wanting a short haircut for a while, but Kent likes long hair!)

Kent can gather the pieces and save it if he wants it. I am done with it!

Today's excursion:  Lumbar Puncture with chemo. AKA spinal tap.

This spinal tap was not as nice as the first. The needle just landed on a nerve and was very uncomfortable. Well... Painful for about 2 minutes, (probably less in actuality) then it was all over. The operator was very comforting and soothing and I got through it. 

Dr. Morris said out of 10 spinal taps chances are you will get a nerve once and get a headache once. Great. Headache to go. Great 8 more spinal taps to go.

Mark and Joan visited after they donated platelets.  (Thank you!) They said it was very high tech and comfortable.  Mark is a rock star: they got 2 bags out of him in one sitting!  

Their reward for visiting?  Not much. All they got was this view of me.

Darlene came up and donated platelets too! (Thanks, Dar!) She brought....

If you don't know what it is, you are missing out.  It is "Darn Good Chocolate Cake."

So good, I couldn't stop at one piece.  (I thought I would share with staff but they didn't get much!)

I will get out and walk it off when I can. But hey, a girl needs a treat once in a while. Chocolate cake takes my mind off my back!

Great day here! Hope the same for you!