Missing You

We love you so, Alan, and we miss you more every day. Thank you for brightening our lives.

I Can't Leave Town for a Minute

Well, all's well that ends well.

It all began with a mole on Mike's chest. As Mike has spent most of his life out on a beach somewhere and the spot looked suspicious to me, I had been badgering him for months to have Dr. L take a look at it. We both know from prior experience that Dr. L will take a look about 15 seconds before he passes judgement, deadens Mike up, carves out said mole, and goes on to his next patient. I'm not sure if it's because most of Dr. L's patients are women, but he's pretty gruff toward Mike, and we like that just fine: get in, get it off, get out in less than an hour, get results in less than 2 days. None of this fussy come in for a consultation, come back a week later, waste 6 hours of your life, then 2 more weeks to hear from the lab.

Last time we went, Dr. L took a mole off Mike's back. That's the day I knew I could carry Mike's baby: I was riveted. Though Mike insisted that he didn't feel a thing, everything Dr. L did looked like it would hurt one of my own, and I had a visceral reaction to protect Mike. It was surprising that I literally had to sit on my hands to keep myself from stopping the procedure, only because such a deep voice in me was shouting to make that man stop stabbing my husband.

I didn't expect those protective feelings about somebody until I gave birth.

Anyway, it just happens that Mike's appointment was at the same time I was supposed to head to a client's office in Satartia, Mississippi. We agreed that as Mike had to drive us both home (the whole visceral experience left me wiped out and somewhat nauseated), it wasn't necessary for me to tag along and that he would take care of everything himself.

Next came Mom's eye. Have you ever seen somebody blow out a blood vessel in their eye? It doesn't hurt at all, but there's a lot of blood for such a sensitive area of the body, and it looks downright gnarly. Mom had recently changed a medication, so though she wasn't in any pain, she decided to err on the safe side and have it checked out. No big deal, no she didn't need me to go to the doctor with her.

And anyway, you guessed it: same time I was going to be in Satartia.

I was on my way home when Mike called first: "Since it was on my chest, I was able to watch this time. It was pretty gross. I had to sit down." Translation: it was gross enough that Mike almost passed out himself. Ha! He thought I was being a weenie last time. "Mike, do you need me to come and get you?" (knowing it would be at least an hour and a half before I could make it) "No, no, I'm on the road right now. Just wanted to let you know it was done."

Great. My recently-grossed-out-and-cut-up-husband is driving around and talking on the cell phone.

I was in the middle of a cotton field in the Delta when Mom called next: "I'm in the recovery room. They had to cut something out of my eye." What do you mean, out of your eye?!? Lymphoma is a weird thing and can apparently manifest itself on the eyeball. And the only way to find out is to actually cut out a sample and send it off to a pathologist.

Excellent. My recently-dilated-deadened-and-biopsied-on-her-eyeball mom is about to be woozily driving around and talking on the cell phone. And the doctor said it was OK, so there's nothing I can do about it.

No wonder I have migraines.

It's a wonder I wasn't stopped for speeding: my mind in a thousand different directions, and none of them included the road on which I was driving at the time. The day had snowballed from no-big-deal doctor appointments to samples taken out of somebody's eye, and that was just not acceptable. And though I was not necessarily needed at either of said appointments, it would have been nice to be there for moral support, hold a hand, or even to be able to drive the wounded home.

Welcome to motherhood: check your control over life at the door.

I found Mike at the house, gearing up to move furniture in the office. As he was supposed to keep the bandages (!!!) clean for 24 hours, he figured a trip to the pool was out. I had also convinced him not to mow the lawn or go for a run. So the next logical step would be moving filing cabinets and a pre-World-War II desk that weighs roughly 2.5 tons. Um, no. His bandage was so packed, it honestly looked like he had been stabbed.

In an effort to keep the man still, I decided we had to go check on Mom. She didn't look much better: the eye looked like she'd been socked. Between the two of them, they made Fight Club look like a bunch of pansies.

(You're welcome for the gratuitous Brad Pitt bare chest pic. Even if I did call him a pansy.)

But as I mentioned, all's well that ends well. Over the next few days, we learned that neither Mike's mole nor Mom's eye had any traces of cancer, and though they were the worse for wear, they have both almost completely recovered. It was worth it in the end to know the good news. Mom will have to return to have her eye checked on by professionals, and Mike and I both were surprised at the size of the incision on his chest.

It's ok Honey. Chicks dig scars.

Photos courtesy of icanhascheezburger and Huffington Post.

Italian Cream Cake

Mike proposed to me on July 11, 2006. Mom was diagnosed with lymphoma on August 5 of the same year, and doctors started dumping cytoxin, vincristine, and rituxin in her body shortly thereafter. Everything turned out OK, but the process was difficult when we were in the midst of it.

Especially so because our good friends Cindy and James were getting married late that October. Mom had offered to bake the wedding cake, but there was no way she would be able to do it: the chemo had rendered her unable to hold a can of Coke, much less bake a quadruple-batch Italian cream cake.

So with much trepidation, I stepped up. I went for a simple design - very much like the one above that I baked this morning - but it was much larger and rectangular with two tiers. My favorite part of it was that I took Tropicana sweetheart cluster roses, clipped each bud to have about a 1 inch stem, and tucked them in a tight, neat row at the base of the cake. That way, everybody had a piece of cake with a rosebud on it. I wish I could find the photo of us during the reception - Cindy had Mike and me feed each other cake as practice for our own upcoming wedding. It was a hoot and a half.

We are still blessed enough to have Cindy and James as good friends, and I look forward to my visits at their place in the country. Meet Red and Spot, the calves James gave Cindy for her birthday a couple of weeks ago. Aren't they beautiful? They were bottle-raised and came from the Vet School at Mississippi State.

Happy anniversary, you two.

Italian Cream Cake
1 stick margarine
1/2 cup vegetable shortening
2 cups sugar
5 egg yolks
2 cups flour
1 teaspoon soda
1 cup buttermilk
1 teaspoon vanilla extract
1 small package coconut
1 cup chopped nuts
5 egg whites, stiffly beaten

- Cream margarine and shortening, add sugar and beat until mixture is smooth.
- Add egg yolks and beat well.
- Combine flour and soda; add to creamed mixture alternately with buttermilk.
- Stir in vanilla and add coconut and nuts.
- Fold in egg whites.
- Pour batter into 3 greased and floured 8-inch cake pans
- Bake at 350 for 25 minutes. Cool and frost.

Cream Cheese Frosting

1 (8 ounce) package cream cheese, softened
1/2 stick margarine
1 box powdered sugar
1 teaspoon vanilla
Chopped pecans

- Beat cream cheese and margarine until smooth; add sugar and mix well.
- Add vanilla, beat until smooth. Spread on cake and sprinkle with pecans.

Another Scan Bites the Dust

Mom's PET scan last week came back "clean." But instead of coming back in 6 months like Dr. S. said we would do 3 months ago, she wants Mom to get another one in December, 3 months away. I'm pretty sure she's just being cautious becuase of a few other health risks, but it's still a little disappointing.

I wonder what Dr. S.'s other patients in the waiting room think of us when we hang out. We're used to being the last name called because Mom doesn't have any sort of emergency situation going on. So I take my laptop, and we surf the Interwebs in search of humor. Here we are, surrounded by the sick and dying, people who can't walk and who have no hair, huddled in blankets because their bodies can't keep their own warmth. We can empathize as Mom has been wheeled into that office several times without the strength to walk in. We sit literally in the Valley of the Shadow of Death.

And we're hooting it up. I guess we honestly fear no evil. I never realized that until I sat down to write this post.

God gives us mirth for so many reasons, but right now I'm most thankful for the comfort of it. Like laughing out loud in a dark alley to scare the bad spirits away, hearing Mom's laughter while we sit in such a dismal spot in life means so much. It lifts our spirits, and if somebody's sitting close to us, we'll turn the computer around to spread the smiles. Usually it starts a conversation, and here we sit, talking to complete strangers to whom we are deeply bonded by the lowest common demoninator of cancer.

Mom tried to do this last PET scan without an Ambien, Adavan, or any other "nerve pill," but it was really hard. She found herself apologizing to the nurse, saying, "I thought after a dozen of these, I would be used to them by now." The sweet nurse replied, "Oh honey, you never get used to this."

And it's true. The cancer road is one to which I thought I would become accustomed, like how you doze off on a long car ride. But after four years I'm still not used to it. I still get that bad thrill of anxiety in the pit of my stomach. I still get nervous and itchy. I still have sad days, grumpy days, and days where I don't want to get out of bed. And I'm just a lowly caregiver.

But God gives us strength in each other and in our laughter. We literally giggle in the face of death. It reminds me of Psalm 126:2: Then was our mouth filled with laughter, and our tongue with singing, then said they among the heathen, the Lord hath done great things for them. The Lord HAS done great things for us: He has provided Mom with the best health care around. He has given us friends, family, connections, and support. He has given us each other for a little while longer.

And He has given us laughter.

Photo courtesy of icanhascheezburger.

An Anniversary

Rest in blessed peace Alan, and into the glorious company of the saints in light.

Time

Two nights ago, I had the most vivid dream. It was one of many that I have had about communication. I had a piece of special cloth and thread. The cloth was a red plaid with golden yellow cross marks, and the thread was pink. I embroidered on it the words, "I sure do miss you, Alan."

As I watched the fabric, in a hand that was distinctly Alan's, an embroidered pair of beautiful silver skates appeared. They had rabbits engraved on them. And I knew as I watched the embroidery work that though Alan didn't like using the pink, he was active, happy, up, playing, mobile. He was being a normal little boy and having a good time wherever he was.

Once finished, the fabric was such a treasure. I held onto it tightly with both hands. And when I woke up, my left hand was clenched so tightly that it's still a little sore.
And so once again, I find myself digging my heels in as unslowable, unstoppable time keeps marching on to October. This happened as 2008 came to a close: I didn't want 2009 to come. It wasn't fair, wasn't right, wasn't natural that a year would exist in which Alan wasn't here. Now I don't want it to have been a full year without him. Most people would say that time heals all wounds, but I'm still railing against it.
I remember when I first heard. My initial reaction was to say out loud, "I'm so glad." But I was glad he wasn't in pain, glad he was free from worry and strife and his uncomfortable mortal coil. And I still am. Now I'm so glad he's somewhere skating on silver skates. But the vast gap between us is more difficult than I ever imagined.

We sure do miss you, Alan.

Photo courtesy of FreeFoto.

Negative.

Oh the nerves of today. Mom had her PET scan last Thursday, June 11th, and we were to report to Dr. S's office this morning. At that point, Dr. S. would tell us what the PET scan revealed and whether or not Mom was going to undergo the last two rounds of Rituxin and Fluderabine, the first of which put her in the ER on Mother's Day, followed by a three night's stay at Baptist. Yeah, we were nervous. I wish we could have taken some of the pills pictured above. A good dose of sanity would have been nice.

Mom's nurse took us back to a treatment room, so we figured the cancer was still there and settled in. Mom reminded the nurse that we haven't yet seen the results of the PET scan, so the nurse disappeared to find Dr. S, only to reappear 15 minutes later to take us to a consultation room. Soon Dr. S. came in to say Mom's PET scans were NEGATIVE. As in, NO MORE CANCER IS PREVALENT IN THE SCAN.

Woot!

The negative doesn't mean that Mom is completely cancer free, and chances are very good (almost positive) that her lymphoma will come back. But for now she is free and clear and doesn't have to worry about anything cancer-related until her next PET scan in October. I think quarterly PETS are going to become a way of life, but as long as it's not chemo, Mom's happy.

Thank you for all your prayers, thoughts, and support. It worked.

Photo courtesy of We Heart It.

White Blood Cell Delay

Mom and I reported bright and early this morning to get her second of three chemo treatments. You might remember that the first chemo treatment resulted in hives that landed her in the ER, followed by a 3-night hospital stay, so we were both anxious about this dose.

It's normal procedure to run bloodwork on cancer patients before they undergo a round of chemotherapy, and today was no exception. Mom's port went in easily and returned blood well, but I knew something was up when they put us in a room when they called her back instead of in a treatment area. Turns out, Mom's white blood cells have been knocked so low by the Fluderabine that it's not safe to have a chemotherapy treatment right now.

A low white blood cell count isn't a really bad thing. She just feels punk and gets tired easily. White blood cells fight off infection, so it can be very dangerous if Mom is exposed to sickness. If you see her, don't hug or touch unless you've washed your hands.

Dr. S. decided to give Mom 2 weeks to try to raise her white blood cell count naturally. There are drugs that she could take, but it's better to save those for an emergency (i.e. infection) situation. Mom will receive another PET scan on Thursday, June 11th. Dr. S. will receive those results the next day and will decide what to do next. Mom's reaction was so violent last time that if the lymphoma is in remission, Dr. S. might decide to quit chemotherapy altogether.

So we're in a holding pattern. As always, I can't tell you how much your thoughts, prayers, and support are appreciated.

Photo courtesy Psychsurvivor2.

Headed home!

Thanks to you for your prayers, help, and thoughts.

Mom's still having a few little problems here and there, but at least she can deal with them in the comfort of her own home. She's most looking forward to seeing the dogs!

Twice in as many weeks

Everything's OK now, but I'm on a first-name basis with too many emergency room nurses down at Baptist Hospital.

Mom had Rituxin and Fluderabine last Monday, followed by Fluderabine Tuesday-Friday. Dr. S. expected her to react to the Rituxin on Monday, so she preceeded it with a drip of Benadryl and Decadron. Sure, Mom had a few hives Monday afternoon, but another dose of Benadryl fixed her right up.

Mom had an OK day Saturday. She didn't feel like going to work, and she didn't have much of an appetite, but it was expected from the chemo this past week. Saturday night she developed a few hives too.

By Sunday around lunch, Mom itched all over. Around 5:30, she finally let me take her in due to trouble breathing. I'll spare you the rest of the details. They admitted her to the hospital; she was in a room by 10 PM. I'd like to think I'm good in a situation like that, but when it's your mom, that's a scary thing.

Right now she's sleeping soundly on Ativan, Atarax, and Solu-Medrol. Through the night, the Benadryl just wasn't working, and by noon today Mom wanted to cut off her feet so she could scratch them better. Dr. S. decided to bump it up and knock her out. Now the hives look much, much better, and her normal color is coming back.

I'm hoping we'll get out of here soon, but we've received no word from Dr. S yet. Sure, she LOOKS much better, and she's getting to sleep, but I'm a little worried about what she'll do when the antihistamines and steroids wear off.

The doctors and nurses here at Baptist are lovely people. A nurse in the ER caught my eye on my way to the bathroom to ask how Mike's ear was. We were in the ER two Tuesdays ago with his very infected ear, and I was suprised that she remembered me. If you can make it to Baptist, I highly recommend it.

One Week Down.....

So far Mom has tolerated this round of chemotherapy rather well. We were in the hospital for about 8 hours Monday, then about an hour and a half Tuesday-Friday. The timing was actually a lot easier than we expected it to be, but both Mom and I were suprised how much it took out of both of us.

Monday was rough. The nurse had a hard time accessing Mom's port, which really hurt. Even though they started with a drip (not a shot - a DRIP!) of Decadron and Benadryl, throughout the day Mom intermittently broke out in hives from the Rituxin. When she broke out badly enough, the nurse would stop the Rituxin and pump Mom full of more Decadron and Benadryl. Between the high from the steroids and the low from the Benadryl, Mom's body couldn't decide if it was wired or woozy. Baptist has WiFi access, so most of the time we watched Carol Burnett reruns on YouTube.

Something I've learned from long-term healthcare: PAY ATTENTION, and sometimes you can keep from getting stuck all the time. The nurse took Mom's port access needle out at the end of Monday before I could say, "wait! You're going to have to access that again tomorrow!" In the end it was just as well, as Mom really didn't like how that first port access needle was seated. But once they accessed her port Tuesday morning, the nurses were able to just leave that needle taped in (with a gentle reminder from me) for the rest of the week. Therefore, next time Mom starts a week of chemo on June 1st, she will only have to be stuck once!

Tuesday Mom was ready to fight tigers from all the Decadron. Her cheeks were rosy enough for her to look slightly drunk all day, and she felt really great. Port access was much much easier. Wednesday-Friday she has been falling off the Decadron high, and by last night, she was feeling rather punk. Her white blood cell count is currently taking a nose-dive, so she'll feel pretty bad next week.

She will also be highly susceptible to infection, so if you have the sniffles, please stay away.

Remembering her pain from last chemo, even though she's taking different drugs this time, I made a point on Wednesday that we wanted some pain pills for this weekend, just in case. Mom was sent home with SIXTY Lortab! So she's set for a while. That kind of makes me worry about what we should expect. We know that since this is the first round of three, it will hit her harder than the next two will. She's not in the Vincristine-induced bone pain, but she is having trouble getting comfortable, and she rarely sleeps more than one hour at a time, but the Lortab should fix that.

And we have some good news: Monday's report from Mom's PET scan was a positive one. Previously, she had some cancer cells on the right side of her neck, but the PET scan showed that they were gone. I'm reluctant to believe it, but the cancer might actually be going away. Dr. S won't yet use the R-word. We've lived with it for so long, I wouldn't know what to do with a cancer-free mom!

I've felt pretty crummy lately. Maybe I've been exposed to something at the hospital or maybe I'm getting older or just a little run down. I have a new appreciation for healthcare providers. Guess I'm just not as young as I used to be.

She's going back in on Thursday for bloodwork to be sure her counts are OK and that she's not becoming anemic. Then we'll report back to the hospital on Monday, June 1st for the second round of three.

Meanwhile, Mike's ear is still stuffy and bothering him. We were in the ER two Tuesdays ago with an ear so infected that it almost ruptured. He's on his third round of antibiotics. The good news is that now he is almost consistently able to pop it, so we're hoping it'll get better every day.

The Verdict

The spot on Mom's face has changed, but Dr. S isn't going to do a biopsy of it. She didn't schedule a bone marrow biopsy either. From Mom's symptoms, Dr. S has decided it's time to try chemotherapy again.

Two weeks from today, May 4th, Mom will start a protocol of Fludarabine and Rituxin. Dr. S says Mom won't lose as much hair as she did on the Cytoxin, Rituxin, and Vincristine, AND Mom won't have to take Prednizone (yay - no grumpiness!). Dr. S doesn't expect Mom to get as physically ill as she did the first go 'round. Mom will take Bactrim, an antibiotic, for about 6 months to help her fend off infection and Allopurinol to help her body handle the toxins.

In preparation, she'll have a tooth fixed on April 23, as this kind of chemotherapy will drastically reduce her white blood cell count and make her susceptible to infections. Then she'll have a PET scan done at the Colonades a week from today, Monday, April 27th, to see what the cancer's doing and to get a benchmark against which to compare any progress.

This chemo is once a day for five days. We'll do that once every four weeks. The first day will take about 8 hours, and each day after that should take 2-3 hours, depending on Mom's bloodwork.

So we'll do a PET scan, 3 rounds of chemo, and then another PET scan to find out if it's making a difference.

Photo courtesy of Corbis.

I Sing a Song for the Saints of God

Four years ago this Wednesday, April 1st, Dad called my cell phone at 11:40 AM to let me know that A3's headaches had finally been diagnosed. I was standing in front of the Edison Wathall Hotel in downtown Jackson, wearing a teal springtime dress. It's the first time I remember the world falling out from underneath me. He fought so hard and never gave up. I never gave up. I truly never believed it was the beginning of his end on this earth.

We recently visited the Boy's headstone.

It's an odd, smoldering grief. A good friend who works with Hospice told me that it will take at least three years to get over it, and I believe that now. I still dream about him, and I pray that I always will. I cling to and cherish reminders of him: a flower he made me, a plastic dog he put on top of my birthday cake, turtle pillowcases he picked out for me, the whistle of a train, a cardinal outside.

There are so many facets of this sadness, so many regrets on my part. To have been there more for the family, to have realized what was really going on. To have known him better, to watch him grow up, to attend his wedding, to be there for him through anything.

But I can't imagine what his nuclear family must be going through. What they will carry with them always. I wish there was something to do, but nothing will ever replace him.

So I'll type the two pieces that have followed me. They both enter my head when life gets quiet; I'll say them with the rhythm of walks with Dante, the tumble of clothes in the dryer, the tick of a timer. And maybe, just maybe they'll help fill the gap until I get to see him again.

I sing a song of the saints of God,
patient and brave and true,
who toiled and fought and lived and died
for the Lord they loved and knew.
And one was a doctor, and one was a queen,
and one was a shepherdess on the green;
they were all of them saints of God, and I mean,
God helping, to be one too.

They loved their Lord so dear, so dear,
and His love made them strong;
and they followed the right for Jesus' sake
the whole of their good lives long.
And one was a soldier, and one was a priest,
and one was slain by a fierce wild beast;
and there's not any reason, no not the least,
why I sholuldn't be one too.

They lived not only in ages past;
there are hundereds of thousands still.
The world is bright with the joyous saints
who love to do Jesus' will.
You can meet them in school, on the street, in the store,
in the church by the sea, in the house next door;
they are saints of God, whether rich or poor,
and I mean to be one too.

~

Do not stand at my grave and weep,
I am not there, I do not sleep.
I am in a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight,
I am the starshine of the night.
I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in each lovely thing.
Do not stand at my grave and cry,
I am not there. I do not die.

Mary Elizabeth Frye (1905-2004)

Photo courtesy The Plant Directory.

Here We Go Again

Mike asked me to marry him on July 11, 2006. Mom was diagnosed with B cell, abdominal, non-operable, non-hodgkins lymphoma on August 6th of the same year. It's classified officially as stage 4, but just barely, as only little spots of cancer were present in her marrow. So we call it stage 3 1/2. Later in 2006, she underwent nine weeks of chemotherapy - cytoxin, vincristine, and rituxin - but the lymphoma didn't budge.

So her oncologist decided that we would wait to pour more toxins into Mom until the cancer was once again on the move. Cancer reacts to chemo when the cells are dividing, so a slow-moving cancer like Mom's doesn't react as well as fast-growing cancers do. So Mom would do scans every 3-6 months to see what was going on, and so far, so good.

Pessimists see a glass as half-empty. Optimists see a glass as half-full. I see a glass with something in it.

On one hand, yay! No chemotherapy! On the other hand, Mom still has something in her that's not suppposed to be there. It's kind of a catch-22.

Around March of last year, Mom developed a spot on her right cheek. After visiting three dermatologists (and asking each one of them to biopsy it, which they wouldn't), she was finally referred to a plastic surgeon to remove what all the doctors thought was a subaceous cyst. Yep, it was a manifestation of the lymphoma. We went straight to her oncologist, who was rather frustrated that she didn't get to take a stab (no pun intended) at it, but we figured it was a one-time deal. It was gone, and now we just had to deal with the scar that was left.

Last week another spot came up on Mom's face. It's just above her left temple. She happened to have a follow-up appointment with one of her surgeons on Tuesday, but he said that we can't remove this new spot surgically: it's too big and in a spot on her face that doesn't have much fat. We went to Mom's oncologist on Wednesday morning. Her scans all show a stable status: the lymphoma in her body hasn't moved. But Dr. Shumaker believes that Mom's symptoms are enough to consider treatment as opposed to maintaining the status quo.

Dr. Shumaker put Mom on Keflex, an antibiotic, Tagamet, a histamine 2 blocker, and Benadryl as needed when she breaks out in hives on her arms and legs (this happens about once a week). She also upped Mom's Lexapro because Mom and her oncologist have a suspicion that maybe the stress from tax season leads to these nodes popping up on her face. I'm not convinced of that but hey, at least she'll be happy about what's going on!

So we're going to wait the 6 weeks until tax season is over and have a follow-up on April 20th. If the spot is still there, we'll have it biopsied. If it turns out to be lymphoma, we'll start on a systemic chemotherapy for reoccurrent lymphoma, even though Mom's cancer has always just sat there and hasn't really occurred again.

Her last chemo was relatively easy - one day every three weeks. If we do go in for this new chemo, it'll be more involved - five mornings every three weeks, depending on her cell counts. Again, on one hand, yay! She may get rid of the lymphoma! On the other hand, boo. Chemo.