A little mental floss

Here is Mom and Dr. Jeong (aka: VA and Dr. J)! This has been one heck of a journey and you never know quite where the next turn will take you, but you just hang on for the ride! We have really gotten attached to Dr. Jeong. Every time he comes in to talk with Mom, in the hospital or in the Cancer Center, he gives 110% of his attention. He answers any question ... from Aunt Judy's big-word medical-terms to my hand-gesture "thingy" descriptions.

Now, we did have one little discussion this past week regarding certain activity Mom could (or couldn't)participate in. Mom has been feeling better and better every day - but that doesn't mean we get to over-do anything! Her cousins get together every couple of months just to hang out, walk down memory lane and have a little quality time. Now, I call that a party, but Mom calls it an "intimate social gathering of family" (I wish I had thought of that when I was in high-school ... Mom, I'll be back later, I'm just going to an intimate social gathering of my classmates!) So, we let Dr. J make the call.

Since her blood numbers were continuing to go up, and if she was getting cabin fever, Dr. J said she could attend- just make sure no one had been sick recently. So, Mom and Aunt Judy and about 6 of their cousins had a nice little get-together. Mom's rule for the night was No huggin', No kissin', No cryin' (I think those were her rules for me at my social gatherings back in the day)!

So, all's well that ends well. This has been a physical journey just as much as it's been an emotional one. Seeing family did her mental health some good, and will help her to get stronger. Thanks everyone for all the e-mails and cards. Those help the mental health, too!

Tomorrow (Wednesday) she will go in for outpatient surgery to have a mediport put in. She will get her chemo through that for the next 3 rounds. Monday (the 25th) she will start round 2. Dr. J said this one will not be as intense as the first one... and we all know Dr. J is always right!

Through and through

So far, this week has gone well. Mom is resting and healing and getting a little stronger each day. We went to the Cancer Center for a check-up and to talk with Dr. Jeong about the next round of chemo.

She still has the picc line, but it decided to get infected, so they treated it and will take it out soon. Next week she will go in the hospital for outpatient surgery and have a mediport put in. It's a small, round ball put under the skin, right below the collarbone. She will get her chemo through that and they can also draw blood from it. The picc line has a catheter sticking out, and she has to wrap her arm when she showers so it doesn't get wet, and there are 2 ports where they stick the needles in that flop around all the time. Everyone says she will like the mediport so much better because, once healed, you don't know it's there. It's less trouble for the patient vs a picc line.

The following week, Monday April 25, she will start chemo again. Mon, Wed., & Mon. she will go to the Cancer Center for treatment (Sat - she'll go to the hospital as outpatient). This round should be a little easier on her. We're hoping it is!

Before, she was weak and couldn't seem to get any strength built up. This week, she gets tired, but she can rest for a bit and then have some energy. It's weird how your body reacts at different stages - what's actually weird is that she functions at all considering what her body has been through... and what's been through her body!

Ladies and gentlemen, the Beatles

Is that Ringo Star? 

Oh, it's Mom and Chad (Wendy's husband). Can you tell who is wearing a wig?

Tricked you again, they both are! Those wigs are pretty convincing... and pretty entertaining!

Let's hit the open road!

The steroid sure kicked in! Mom is getting her strength back, and Dr. Jeong has released her. It's time to head home! 

She will go to the Cancer Center to have blood tests Mon, Wed, and Fri. In 2 weeks she will start another round of chemo. They say the first round is the hardest on your body, we hope that's the case!

She is still very susceptible to germs. Thank you to all the family and friends who have sent cards and e-mails. She really enjoys getting the mail everyday and having some contact with the outside world. It's hard for her now to be so "locked up," but she knows it will only last a little while, then she'll be back on the social circuit!

Peek-a-boo

Here's a sneak peek at my biker-chick mom. Isn't she cool!

Her hair is falling out pretty quick. She's still very weak but Dr. Jeong thinks she will go home Saturday.

The other day she was talking to Hadley on the phone and Hadley said "When I'm sick, I want my mom." Mom told her "Me, too!" 

Granny has been up to visit every day. She brings food to try and tempt Mom into eating (sometimes it works!) These last couple days she has helped her with a shower. Who would think their 78-year-old mom would still be giving their kid a bath?  :)

Her blood numbers are still going up every day, that's a good sign! Friday they started her on a steroid to help her get stronger.

Get up and scream & shout!

If you are reading this, I want you to stand up, and jump up in the air at least once... come on... at least 1 jump! You can let out a "whoo hoo" if you want.  Come on.... I'm just asking for 1 jump!

Why are we jumping? Dr. Jeong came to visit this evening and said he had the results of the bone marrow test. It's all clear – no cancer cells left in the bone marrow! She is officially in remission. The chemo got them all. It was a fight to the finish, and worth the battle! What relief this feels like! 

Today is the first day her platelets increased on their own. Her white blood cells and red blood cells are up, too. That's a good sign. She got started on a steroid today to help her get stronger. She is still very weak and tired. Day-by-day her mouth is getting better, too.

Mom will continue to do 3 more rounds of chemo, so we still have a long road ahead. This chemo will make sure there are no cancer cells floating around in her blood. There will still be good days and bad days, but from now on she's a survivor! That's just awesome!

Come on...if you didn't jump the first time, you gotta jump now!

Put her on ice!

I'm happy to say that today got better as the day went on. This morning was rough. Mom had a temp of 102 and a terrible headache, which made her sick to her stomach. The nurse called it a neutropenic headache. A what?

The chemo is killing off the white blood cells, red blood cells and platelets. Neutrophils are a type of white blood cell. Neutropenic is when the number of neutrophils in the bloodstream drops very low. It stops the ability to fight infection (why she has limited exposure to people/germs). Mom has been neutropenic for so long (over 10 days), her body is just reacting to the stress. How was that for an explanation!  :)

The nurses brought in some ice and packed it all around her. It dropped to 100 by 10:30 a.m. and by noon it was down to 98. Fever means infection, and infection is what we don't need. She doesn't have anything to fight it. The headache finally went away this afternoon, too.

Dr. Jeong did not like that fever, either. He seemed very concerned... which really gives you a pit in your stomach! He is having an infection specialist come in and check her over. We still don't have the results of the bone marrow biopsy. "Thursday or Friday we'll get it" he said today. He also explained how this type of leukemia/chemo is different from others. Most of the time, you do a bone marrow test on the 14th day and you can see if all the cancer cells are gone. What Mom has differs in that there is no certain day to do the bone marrow biopsy. Did he do it too early? Possibly. If the results come back and there are still cancer cells swimming around, then he will do another biopsy in a week and be able to tell if they will all disappear. Either way she will have a couple more rounds of chemo.

For now, we make sure to keep Mom as comfortable as we can. Once that headache and temperature were gone, she perked right up, ate a little lunch and read some cards. Thank you to everyone out there who sends her cards, e-mails and good wishes. They sure do boost her spirit!

What could these dime store items mean?

What do these things have in common? 

Nothing really, but they came in handy today. Between the dry hospital air and the medications drying Mom's breathing passages out, a little vaseline up the nose feels good! So, today's invention: Q-tips with medicated vaseline on the ends. For use up-the-nose only, please.

On Sunday, Chad was chewing gum. "Boy, that looks refreshing" Mom thought. The only kind of gum we had was spearmint. That was a little too spicy for her sore mouth. But juicy fruit really hit the spot today! It's bland, but has enough kick to make you spit a little.

Mom's platelets dropped again yesterday so last night she got another platelet infusion. The results of the bone marrow biopsy were suppose to be in today, but Dr. Jeong wanted to run another test on the bone marrow. We should have the results Thursday. 

Slowly, she's trying to get back to "real food." She ate pancakes for breakfast and a cheeseburger for lunch... and not just a hospital cheeseburger, a DQ cheeseburger! 

Caution, Caution...

This bracelet just cracks me up every time I see it, so I had to share. It's on her left wrist and says "LIMB ALERT." So, if you get queasy by the sight of a limb, take caution!  :)

It's not like she has an extra limb, this is just her left arm. But, what if there was no limb, where would they put the bracelet? 

Actually, the bracelet is to alert the tech not to take her blood pressure on the arm with the PICC line... but I would think they would see it... but again, I have an art degree not a medical degree!  :)

Can't we just cut them off?

The bone marrow biopsy went well. Mom was real groggy most of the day. Just when you think there can't be anymore wires or tubes attached to you, they attach some more. After the biopsy, and Mom was awake, she had to tinkle. I helped her get up... and boy did we have knot. She has a tube to her IV for the pain pump, and a tube for 3 bags of antibiotics and 1 bag of sugar water. For the biopsy they put electrodes on her chest to monitor her heart, so that meant more wires. We successfully rolled an IV pole, heart monitor and 80 feet of tubing into the bathroom, and Mom, of course!

We will get the results tomorrow. Today, her platelet number was back down to 16. She just got an infusion on Saturday, so Dr. Jeong was a little concerned. He did explain how the blood infusions work: the first time she got platelets, her number jumped to 82. This time it only jumped to 58 (on Sunday). He says the health of the blood donor is a factor in how the blood does. Maybe she had a young, super healthy donor the first time and maybe the second time the donor was a little older. We have learned nothing is exact science, everything is a gray area. We'll see what tomorrow brings!

The best medicine...

Since Mom (Grandma) had been a good girl all week, we scrubbed, cleaned and de-germed the kids and brought them up for a quick visit on Sunday. Mom says they do more help than any pill. 

Dr. Jeong said he would do another bone marrow biopsy tomorrow morning. It will show if all the cancer cells are gone. That's what we are hoping for!

Lunch Lady

Doesn't Granny look cute with her mask and gloves on?! She comes to visit, and sometimes brings lunch from the outside. Baked Potato Soup is a favorite!

Tough chicks!

The rest of the week went pretty smooth. Every day was a little better than the day before. Slowly her mouth was getting easier to move, but it still hurt like the dickens!

Friday was April Fool's Day (Happy Birthday Uncle Denny!). Hadley and Chad went to the LeRoy Girl Scouts' Father/Daughter dance. I think Mom was just as excited as Hadley was. I took pictures and brought them in Saturday morning and we hung them on her board to brighten up the room. Hadley looked so pretty!

Her platelet number kept dropping so Saturday she got 2 bags of platelets again. What should have taken 1 hour actually took 4. Hopefully it will give her a little energy!

And I must say, when all this first started, I had to step out of the room when they started doing anything with blood. Now I'm not only in the room, but I handed the lab girl the blood tubes! And Mom doesn't pass out at the sight of blood, either. We are both tough chicks!

Memory lane

The cards keep pouring in. Please keep them coming... they lift Mom's spirits! This one was sent from Aunt Kate (Granny's sister). Can you tell which one is Mom?

Hint: She's the littlest one.

Update: Virginia and her brother, Donnie, are the 2 little ones, Darlene Underwood and Eddie Miller are the older two kids, they are posing with Aunt Kate. Where are they? Granny and Aunt Kate are guessing Uncle Rich's house.

By Hadley & Haden

Hadley and Haden made some art to decorate Mom's room. Top left is Hadley's interpretation of Grandma in bed with Hadley and Haden. Bottom left is by Haden. Haden always tells her "There is a special place in my heart for you." He also has a special place in his heart for the cat...

Who's up for cocktails

The pain pump is working well. Mom is able to be more comfortable. It hurts like the dickens to talk, but the cream and sponge-on-a-stick help a bunch.

Every day Mom has to drink "Dr. Jeong's cocktail." It's his own special recipe of Benedryl for soothing, Maalox for GI track, Caraphate for coating the mouth/throat and viscous lidocaine to numb it. He has it made at the Cancer Center, and now his patients ask for it while they are in the hospital. It is a thick, pink liquid that tastes bad, but feels so good!  She can take it up to 4 times a day. Yummy!

Now we know, Dr. Jeong is always right!

At midnight, Mom woke up in a sweat and her mouth was locked shut. She could not believe the pain she was in. It had escalated in her sleep and now it was about unbearable. Do you remember me mentioning a couple posts ago that Dr. Jeong had ordered a pain pump? Well, Mom kept telling the nurses to hold off and finally she said she didn't want it. It was just more medication. "How does all this medicine know where to go?" she said.

Well, now she wants it. She buzzed the nurse and started to get her mouth open so she could talk. When the nurse came in, she said "I changed my mind, I'll take the pain pump now." Sadly to say, since she refused it earlier, the only way to get it was to call Dr. Jeong and have him reorder it.

"Absolutely not!" No way in the world was Mom going to wake up Dr. Jeong at midnight when she should have listened to him in the first place. "I'll be ok. As soon as he calls in the morning, ask him then."

So, she coated her tongue and used the sponge-on-a-stick and tried to rest as much as possible. She didn't sleep much rest of the night, and at 9:00 a.m. Beka, her nurse, brought in a pain killer. She got 1 does right away in her IV, then they hooked up the pain pump. She can hit it 1 time every 10 minutes, as needed.

Boy did that do the trick! She got very sleepy and saw cats jumping on her bed and up towards her head and a bunch of other weird stuff.

After she awoke from her drug-induced state, her mouth was feeling much better. It was day-and-night difference. She was ready for a shower, drank a glass of water and swallowed her chemo pills with no problem. Was it too good to be true? Yes! All that water she drank came splattering back out! Her belly hadn't had anything since Saturday at noon, and now a whole glass of water was flooding it. But not for long. From now on she'll drink slowly... and the morale of this story is: Dr. Jeong is always right!

The neighbors are restless

Last night Mom had a rough night, but Harold's was worse. At one point, Mom heard a nurse yell, "What are you doing? We don't need you standing there!"

Wonder where he was standing?

I should have been a nurse!

Harold is next door. He is a cute, little old man with his gown 1/2 on (or 1/2 off - how ever you want to look at it). I stopped and asked the nurse a question at the nurses' station, and as I walked back in Mom's room, Harold waived his hand and motioned for me to come in his room. Poor thing, all alone, so I went in.

"Can you move my tray? The wheels are locked" he said. Being the kind sole I am, I said "sure." Well, the tray wheels were wedged in under his bed wheels. It was wedged in there good! As I set it free, Harold was thankful and his face lit up.

I walked back in Mom's room happy that I could help poor Harold. As I started telling Mom the story I hear a nurse yell "Hey, how did you get up? Get back in bed!"

Oops! I didn't do a good deed at all... He was planning his get-away and just needed a sucker!

Good luck Harold, I'll stick to room 586 from now on.

The name of the patient was changed to protect me from the nurses who may be reading this.

Mirror, mirror on the wall...

We decided to investigate the situation ourselves... "open wide," I said. Mom slowly opened her mouth as far as she could and stuck out her tongue. She was in so much pain that it took her about 5 minutes to do that.

Here is how Mom describes it. "You know when that kid takes the double dog dare and licks the flagpole in 'A Christmas Story?' That's how it feels every time I move my tongue. My mouth is so dry that my tongue just sticks to my teeth."

All along the side of her pale, swollen tongue were imprints of where her teeth have laid. It hurt just looking at it. Mom tried to look in the mirror, but I had a better idea! "Hold still, I'll get my camera!" So, if it wasn't for those quick reflexes of mine, you wouldn't be enjoying this photo right now.... see, my art degree may just come in handy after all!

So long, friends

Today is the first day she feels hair tickling her face. When she brushes it away, it is no longer attached. Thank goodness we got her those sporty hats!

Pictured is Mom and her sister, Judy. Can you tell who is wearing a wig?

They both are! Judy has alopecia and lost her hair 2 years ago. Mom's friend Vicki, of Fox & Hound's, set them up with these stylish do's. Thanks Fox & Hound's!

Mom gets an A+

With Mom's platelets at 0, and white blood cells dropping, Dr. Jeong ordered some blood. At 11:00 p.m. Ryan, her nurse, started a bag of A+ platelets. She had 2 bags and they dripped all night. At 4:00 a.m. it was finally done - just in time for the morning labs at 5:30 a.m.

Mom didn't get much sleep. The PICC line was getting a little temperamental. The slightest movement of her arm made the machine beep... and we didn't pack Cathy's afghan this time, there was no place to stick her thumb. Note: Bring the afghan tomorrow!

Her labs came back critical so Dr. Jeong ordered 2 bags of red blood cells. Hopefully these would help her strength and make her start feeling better. He also ordered a pain pump to help with her mouth.

Tuesday she tried a bite of omelet for breakfast. I don't think so!

For lunch she tried a bite of cheeseburger. Are you crazy! Not with that throat.

Jell-o went down a little easier, but not much. The IV diet will have to do for now. Yum!

Happy Birthday

What a miracle today was. Remember, Kristi's water broke last Wednesday. That was a little early, so they tried to keep baby cookin' for a little longer. Aunt Judy kept calling with updates and finally, this afternoon, baby Fasig was ready to see the world. At 1:24 p.m. Sadie Ann Fasig was born.

Mom thinks she went through sympathy labor with Kristi. 

• Kristi got an IV and was induced at 3:00 a.m.; Mom had an IV and was up taking meds at 3:00 a.m.
• All Kristi could have was ice chips; All Mom could stand to have on her throat was ice chips.
• Kristi was in a lot of pain; Mom was in a lot of pain (however they were each suffering at opposite ends).
• Kristi got something new: Baby Sadie; Mom got something new: platelets.

Happy Birthday Sadie.

So, you're Virginia!

As we checked in at the desk at BroMenn, I told them "This is Virginia Lowery. Dr. Jeong just admitted her again." The man at the desk looked at her, then turned around and grabbed a stack of cards and said "We've been collecting quite a pile since you left. You're a popular gal!" He handed her a stack of about 30 cards and sent her over to admitting.

Once we got up to her room, a couple of the nurses and techs from the first visit came down to see how she was. Darci got her some packets of oral balance cream. It was like a miracle cream. She was able to get her tongue unstuck from her teeth and move it around a little. She also brought her some sponges on a stick. It was one of those times when you say "Gee, I wish I would have invented that!" You dunk the sponge in water then rub it in your mouth and it soothes and loosens up your sore mouth.

A sponge on a sucker stick, who would have thought!

A new room, a new view... and what's your name little fella?

Today is Monday, and Mom's immune system should be at its lowest point today. She is in a lot of pain. Her mouth is so dry and swollen and there are sores in it everywhere. One thing Dr. Jeong told us to watch for was bleeding. Her platelets should be very low, so her blood won't clot. Her nose is so dry, it's bleeding a little inside. She had an appointment at the Cancer Center today.

They took her blood, then put her in a room to see Dr. Jeong. Mom sat on the table/bench thing, laid down on her side and covered up with her coat. "Wake me when he comes in" she said. And she was out. So tired. So tired of being tired. And had a mouth so sore it even hurt on the outside.

Dr. Jeong came in and she sat up to listen to what he had to say. Her blood test revealed that her white blood cells were at 300 (that's good... low, but that's what it should be) and her platelets were 0. She had a slight fever on and off from Sunday and she was very dehydrated. Dr. Jeong thought the best thing to do was put her back in the hospital. Right now the side-effects were winning. In the hospital she could get some medicine for the pain, an IV to re-hydrate her, and best of all, she could take her medicine through her IV... no swallowing pills! Her mouth was thankful for that. 

At home, in order to get the chemo pills down, she had decided to name them. (What ever works, right? If she wants to name her pills, then we name her pills). Their names were: Wendy; Hadley; Haden; Family&Friends; and that BIG potassium pill she had named Chad. Now that she's going to the hospital, she was glad she didn't have to dissolve Chad in water anymore- swallowing it was bad, but dissolving it in water was like drinking sand. The only pills she had to take in the hospital were Wendy, Hadley, Haden and Family&Friends! 

Bottoms Up!

Home Sweet Home

It took a little while to get a routine down. Now that she's home, she has to take all her medicines in pill form - no more IV. She had 6 pills to take in the morning and 10 pills to take in the evening. She was getting more tired every day, but still feeling pretty good. Aunt Judy was going to be here until Thursday... but a baby girl 6 hours away had other plans!

Kristi called Wednesday morning and said her water broke. She was due at the end of April, but babies don't seem to follow the same calendar as we do. Aunt Judy and Zach packed up and headed south. The rest of the week went pretty well. Dr. Jeong said she would slowly get weaker and the side effects of the chemo and medicines would start showing up. Monday, March 28, she should hit rock bottom and then slowly start to improve.

By the weekend, Mom's mouth was getting very sore. It was bright red and her tongue was swollen. She talked less and less and by Sunday afternoon she could hardly talk at all. She stopped eating and only drank a little. Her mouth was SO dry. It was hard to swallow all those pills! One of her pills she took at night was a HUGE potassium pill. It disintegrated the minute any liquid touched it, and it was like a pile of sand. There was no way that sucker was going to slide down that throat. My sister-in-law (Chad's sister), Jodi, is a pharmacist. We asked her if we could dissolve that pill in pudding or water or something. She told us how to dissolve it and Mom got it down. I don't know what we would do without doctors, a nurse and a pharmacist in the family! I mean, my art degree is real handy to have, but the medical degrees have really helped us get through some of this!

Home again, home again lickity split

The 4th chemo treatment was Sunday, March 20. Dr. Jeong said it was best if she went home for the 4 weeks of recovery. "You are too sick to be in the hospital." Have you ever heard of such a thing? She will have no immunity to fight germs, and people around here have plenty of germs!

Aunt Judy was back again from Nashville, this time with Zach, her 15 yr old grandson (Kristi's son). He was on spring break and was going to visit with grandparents and friends he has here. On Monday afternoon they discharged Mom and she headed for home. It was nice to have our own private nurse at the the house! We got her settled in and hauled in all the stuff she had collected while in the hospital. Thank you to all the people who sent cards and flowers and gifts. It was very much appreciated. The hospital stay was like a family reunion mixed with a neighborhood block party with a little happy hour on top. But now we were in the danger zone. Mom was neutropenic. That meant she had no immune system, nothing to fight off infection or these Illinois colds that linger around this time of year. The visitors would come to a halt - after all, that's why we left the hospital.

What would you use the holes for?

This afghan was made by Chad's mom, Cathy. It's made up of squares that are crochet together. Nurses, visitors and even the dietician constantly commented on how pretty it was. Chad explained that he liked it "because I can poke my big toe through one of the holes and that keeps it down and my feet covered." What a good use for those holes!

The 2nd IV Mom had was in her arm by her elbow. As the bag of fluid would drip, it would beep and stop dripping every time she bent her arm. Do you know how many times you bend your elbow a day? Many! And at night-- even more. That darn machine beeped all night long. Finally, one night, she decided to try Chad's trick. She laid on her side and poked her thumb through one of the holes. With her thumb "stuck," she didn't bend her arm the rest of the night. What a way to get some shut-eye!

Tiny soaps and a mint on the pillow? I don't think so!

The next few days were filled with family, friends and needles. Mom has had a hospital cheeseburger for almost every meal. They want her to eat, but nothing sounds good. And nothing tastes good. When she packed her bag, she must have thought she was checking in to the Hilton. She didn't pack shampoo, soap or toothpaste (but she did have about 25 pairs of underwear... who has 25 pairs of underwear?). We made a Target run to get some of the bare essentials. She specifically described the toothpaste I was to get. "Get the kind in the squeeze bottle that stands upside down so it's always ready to come out."

The next day she said "Wendy, about that toothpaste..." Uh oh. I didn't get the right kind. She explained how she put some on her toothbrush and shoved it in her mouth. Quickly, she jerked it out and about gaged on the taste. That was the nastiest tasting toothpaste she had ever tasted. She grabbed the bottle to see what kind it was and was ready to give me a "talkin' to" for buying such a nasty toothpaste... but when she looked at it, she saw it was the same kind as she used at home.

Poor taste buds!

Can you guess what today is?

Happy St. Patrick's Day! Can you believe their kids let them out of the house?
Thanks for the smiles Duane & Sue