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

My, that's a big needle you have

Today the chemo is going in a little differently. It will go in through the new PICC line, but instead of hanging an IV bag, Donna will squirt it through a big syringe. I had to take this picture... I didn't know how else to describe it!

The whole hospital knows she has an underwire

It's Wednesday, and time for chemo again. Every dose of chemo has to go in a fresh IV and she's running out of places to poke. So, she is going to get a PICC line today which is a catheter inserted into a vein by her bicep and runs through the vein, across her chest and stops between her 4th and 5th rib (close to the heart, but not too close). The nurses will hook up IVs and take blood from the PICC line. No more poking! Chemo can be administered through it, too. And the catheter is like a watering hose - it has little holes along it for the medicine to slowly leak out instead of all at the end.

CJ, the nurse inserting the PICC line, was great. She had to sterilize the area and then insert the catheter. Mom was very nervous. CJ was very personable and shared some stories from her previous job as a gastrointestinal nurse. "It's amazing what people get stuck up there!" Her stories kept Mom's mind off the procedure, and she was done in no time.

To make sure the catheter was in the right place, CJ took a chest x-ray. Mom just had to stay laying in bed and they brought in the portable X-ray machine. First, it was in too far, so she backed it out. She took another X-ray. It was still in too far, so she backed it out a little more and took another X-ray. That one was perfect- just where it needs to be. When CJ looked at the X-ray she said "Well my heavens, she's got on an underwire!"

Now she knows what a pin cushion feels like

When I got to the hospital Tuesday morning, Mom was up decorating her room with cards, pictures, and drawings she had received, with the IV cart in-tow. She had hardly gotten out of bed since 5:00 p.m. Friday, but it's a new day. Dr. Jeong had worked magic. We can laugh or cry. Some days we will laugh and some days we will cry. But everyday we will fight.

With every day that passes, she will also get poked. They had her first IV in her hand, then switched to the opposite elbow. The picture above shows how bruised her hand got. And every morning they keep taking blood. Her arms look like a leopard. They even poked that hand a couple times. Ouch!

The magic of chemo and Dr. Jeong's words

It was Monday. Chemo would start in her IV today. How would Mom react to it? Would she throw up? Would she get tired? Will it get worse with every treatment? So far, the only answer to any of those questions was "It's hard to say, everyone is different and reacts differently."

In preparation for the chemo, Mom got a flu shot and pneumonia shot. In 61 years, she had never had a flu shot! She also got some Benedryl and a steroid in her IV - to counter act the side effects of the chemo. But if they won't tell us what side effects she'll have, how can they medicate them?

At 4:00 p.m. Donna, her nurse, came in wearing a mask, 3 pairs of gloves and a splatter apron. She was holding the chemo. It was a bright orange bag. She said it would take about 20 minutes to drip through the IV. That's not too bad. I thought it took hours and hours and she would get weaker and weaker with every drop, but of course, everyone is different. As Donna hung the bag and stuck it in her IV, I had that feeling of when you take your kids to the doctor and they have to get a shot. You have to hold their chubby, baby legs down while the nurse stabs the needle in. It hurts you more than it hurts them. They need the medicine, but isn't there a better, easier way? Did they really have to put that bag of bright orange poison into my mom's veins? Isn't there a better, easier way to treat this disease?

Twenty minutes of dripping went by. No puking. No tired-ness, No swelling. Nothing. In fact, she was much more alert and attentive after it was done. The steroid had kicked in!

So, that was pretty uneventful. Pretty easy. And we don't have to do it again until Wednesday.

Dr. Jeong had said he would stop in and see her today. By 7:00 p.m. we had given up on that. But never underestimate Dr. Jeong. If he says he will do something, he does it. It will be on his time frame, but it will get done. At 9:45 p.m. he came to visit. He sat down and talked to mom about everything that had taken place so far and what would happen next. He said the chemo pills were working like they should (boosting the white blood cells to mature which stops the cycle of producing immature white blood cells) and now the liquid chemo would start doing its job (to kill all the white blood cells: to kill the immature ones, you have to kill them all). He explained the treatment again: 3-4 rounds of M, W, F, Su IV chemo then 4 weeks off. During those 4 weeks, she will have her blood tested M, W, F. She will probably go home after Sundays chemo and recover there. WHAT? I thought we were staying for 30 days here at the hospital? There was no talk of "IF." He said "Leukemia I can fix, but infection can cause death." So, all we need to do in the next 4 weeks is not get an infection. He had a very positive outlook. "Side-effects will be rough, but you can get through it. It will be ok."

Those were the magic words spoken by Dr. Jeong. Very different than his first talk. I think he was preparing us for the unexpected. But Mom was a tough bird. She is good health, only 61 years young and they had caught the leukemia very early. Most of the time people show symptoms or collapse from exhaustion and then discover it. Hers was found by accident in a blizzard by her OB/GYN. After that night I think we all had a new outlook. We weren't out of the woods, and we have a long way to go. So, what are we waiting for? We had been in shock, cried our eyes out for a couple days, now it's time to kick this leukemia!

There is more than 1 use for those gloves

Hadley and Haden have fun with the gloves!

The first 48 hours

Mom left the Cancer Center and went home to pack a bag. What in the world do you pack? What will I need? Who will get the mail? A million things raced thru her head. Who do I call? How can I say those words? "I have leukemia." But it was official. No more hope that the test could be negative. It was positive.

Mom called Chad and asked him to tell me. She couldn't do it - no way would I be able to understand her words through the tears. Chad came home, told me the diagnosis and we all headed to the hospital. We didn't know anything at that point - what they were going to do, what was going to happen, nothing.

At 5:00 p.m. Mom was admitted and an IV was started. Dr. Jeong came in to talk about how he would treat the Acute Promyelocytic Leukemia. He was very concerned and tried to explain the severity of this disease. The only descriptive word that got across was "if." He explained how her white blood cells are not maturing before they are released into her bloodstream. "This is a fast growing disease and we will use aggressive chemotherapy for 30 days to treat it. IF you get past that".... and the rest of his words were lost. Mom heard that 1 word, those 2 little letters, and did not hear any more. Dr Jeong went on talking, but his words disappeared into thin air. The rest of the night is a blur to me now. Lots of uncertainty and tears.

Little by little, we contacted friends and family. Saturday was filled with many visitors and many more tears. It seemed we had bits and pieces of this process and we were all trying to fit it together into one master plan. With a room full of visitors, a nurse would come in and explain something. Once she left, we would all talk and somehow we all heard something different. Dr Siratna was on call that weekend and he explained her treatment plan:

• She will take a chemo pill called Tretinoin. She would take 4 pills in the morning and 4 pills at night. She has to wear rubber gloves to touch the pills and put them in her mouth. Don't touch them, but please swallow them...does that seem right?
• They will draw her blood every morning, test it, and watch her white blood cell count, red blood cell count and platelet count. In addition, they will watch her absolute neutropenic count. Once it is below 1 she can't have visitors. She will be too susceptible to germs and infection and will have no immune system to fight it.
• She will be on a continuous IV of sugar water. 
• Every night she will get a shot in the belly of Lovenox (a blood thinner). 
• On Monday, they would start chemotherapy through her IV. She would get that Mon., Wed., Fri. & Sun., then stop for 4 weeks. She would do that cycle 3-4 times.

With every piece of information, I felt a little better. I think it was just such a shock to get the diagnosis and worst-case scenario, then it takes awhile to slow down and sort it out.

On Sunday, Aunt Judy (Mom's sister) came up from Nashville. She is a nurse, her daughter, Kristi, is a pathologist and other daughter, Kim, is a doctor. Aunt Judy got all Mom's medical records faxed to Kristi so she could analyze them also. Kristi saw the good news she was hoping for. If we were going to go through this, she had "the best kind of leukemia to have."

Sunday was filled with many family and friends and more and more pieces of the puzzle. Blankets, lotion, books, movies, flowers, plants, cards, phone calls, CDs, pictures and a whole lot of love and support from all walks of life.

That weekend was a roller coaster. I don't remember everything that happened. I do know I have never cried, laughed, hugged and been so scared and relieved in all my life.

Yes, Virginia, it's just an annual check-up

On March 11, 2011, our world was turned upside down. Mom was told by the Cancer Center "I can't believe it, your results came back positive. You have leukemia. You really stumped me. I can't believe you have leukemia."

You can't believe it? I can't believe it! No one could believe it. But, as we've learned, blood doesn't lie.

It all started Feb. 1 at her annual OB/GYN check-up. It was a blizzard outside, an estimated 10-13 inches of snow was due to fall on Central IL over the next 24 hours. The doctors office had orders to do a regular blood test, but no one in the lab was there... it was a blizzard outside. So, they sent mom over to the lab that they send the blood samples to. They did the blood test and 1 week later they called with her results.

"We have made you an appointment at the Cancer Center" they told her. "Your blood came back irregular and we just want to rule out leukemia."

Now, imagine where your mind wanders after hearing that. Leukemia? Leukemia. I didn't even know adults could get leukemia.

I quickly learned that they can, and they do. There are 4 different types, and different variations within those. Some are fast growing, some are slow growing, but it all sounded scary.

Mom went to the Cancer Center and they did another blood test. The same results came back. Her blood showed all the signs of leukemia, but she had no symptoms to support it. The doctor said he was stumped. He ordered a bone marrow test, just to make sure. On Wed., March 9, we went in to have the bone marrow test. They put her in a "twilight" state and stuck a fat needle in her hip all the way into the bone. Then they took smaller needles and stuck them in the center of the fat needle and gathered their sample. (By the way, this is my own interpretation... the doctor used bigger words when he explained it). "We will have the results in 1 week" they told her. So, with just a band-aid and sore hip, we went home.

I remember thinking we shouldn't get too worked up (yea, right!). We won't know anything for a week. We could make ourselves crazy for that week thinking of what may be, or try and put it out of our mind and go on with day-to-day activity until we know for sure. I think I did a little of both, but it never left my mind.

Seven days ended up being only 2. The Cancer Center called Fri., March 11, and asked that she come in at 2:30 p.m.– they had her results. So, the work-a-holic left work, with full intentions of returning to finish up some loose ends before the weekend, and headed to the Cancer Center.

She sat down and was told by one of the doctors, "I can't believe it, your results came back positive. You have leukemia. You really stumped me. I can't believe you have leukemia." They said "This is a medical emergency. Go home and pack a bag and be at the hospital at 5:00 p.m. We will start chemo immediately."

So, that's how we got here. A simple blood test in a blizzard. We didn't know it at the time, but it was a blessing. In the coming weeks/months I will share what mom is going through, and hopefully she will share some, too.