the coming End of a Battle

"Love does not begin and end the way we seem to think it does.
Love is a battle, Love is a war; Love is growing up."

- James A. Baldwin

I have no idea who James A. Baldwin is... but I like his thoughts.

I feel ravaged from Battle... and yet, I know that so much more is going to come.

I haven't written; I didn't know how. I still have a hard time putting anything into coherent sentences.

My Mom is dying.

She was released from the hospital 10 days ago, to basically go home and succumb to the infection that she contracted in the hospital. There was nothing more that they could do, so they unplugged her from the IVs and platelets and medications, and that was that.

Since she felt great, we met her at Riverside Casino for an afternoon of her favorite hobby. And she and Dad won pretty well too - which helped in their visits to the casino since (2 or 3 more times, I've lost track.) But things...

I'm just going to post this as is... interrupted and all.
So much has happened since I started this post, and I will need time to process my next post. I know this doesn't answer any pending questions, but it is what it is.

"LoverLove does not begin and end the way we seem to think it does. Love is a battle, love is a war; love is a growing up.

James A. Baldwin

Read more at http://www.brainyquote.com/quotes/quotes/j/jamesabal100681.html#2gH8fkthfzqXzi1L.99

Love does not begin and end the way we seem to think it does. Love is a battle, love is a war; love is a growing up.
James A. Baldwin
Read more at http://www.brainyquote.com/quotes/keywords/battle.html#iFuvF7oj4dHP8Hi6.99

Cancer is a Bitch!

on another note... I am feeling angry, and selfish, and miserable... and thrilled by how much these little boys are moving!

My Mom had a sore throat a week ago. But Tuesday she was admitted to the hospital; by 6pm that night she was transferred to the main hospital in the state; by 10pm that night, the doctors had called it a Recurrence of ALL - Acute Lymphocytic Leukemia. My mom battled this in 2010, and had a Stem Cell Transplant in 2011. In 2012, she battled a localized spot with radiation and everything was fine.

Mom and me, Sunday, 9/30

To say this is a shock is an understatement. We had so many plans for this Fall... making blankets for these boys, refinishing 2 dressers for their room, decorating all 3 boys' rooms. She was coming out to stay with me for about 2 weeks to pick up Weston from School when daycare is closed. And she was coming out when these boys are born for weeks to help. I feel so selfish thinking of all the things she won't be able to do with me... and wondering how they are going to get done.

Here's what we found out this weekend:

We converged on Iowa City en masse Friday night. We spent 40+ mins with Dr. Carter and here's what we learned: her cancer is fatal, all they can do is try to give her time and make her comfortable. Apparently the team knew that her Stem Cell transplant was considered a "failure" since last year when the leukemia came back localized in her elbow. The doctors just never told us that- and I'm not going to lie, we all got mad at that. They were just waiting for it to come back, and we should feel incredibly "lucky" to have had the time we've had. I'm not feeling very lucky right now. 
Everything revolves around her kidneys. They've been slow all week. If they come back and start to work better, then Mom could have months. If not... We're down to days or weeks. Her oncologist is against all machines to extend life - dialysis and such- He calls it a "Quality of Life" thing. But her kidneys aren't bad enough for that yet - but they very soon could be.
It's a 50/50 battle for the kidneys. And they're slow because the leukemia is reproducing so fast and dumping cellular garbage into her blood that its overloading her kidneys.
 
Saturday was a brighter day. She had started steroids over night and woke with minimal pain and was able to move around all day really well! It surprised her doctors, but we all know what a fighter Mom is. We had some good laughs and some tears - lots of talking, etc. 

Sunday brought the good news of better kidney function (not great, but any improvement is a positive sign for us!), but also a lot of exhaustion and a headache that went away after food - I think we wore her out yesterday! So we visited and painted her nails, and let Mom get some much needed rest. The highlight of my day was Mom walking to the family room to check on her grandbabies - and then the photo op that followed (pictures to follow.)

Mom walked down to the Family Room to
give her Grandbabies hugs and kisses.

I just got a call from my sister that the headaches aren't as simple as we thought... they did a Cat Scan this morning and the results showed 2 small brain bleeds. She had hit her head on the car over a week ago... that could be one of them. But they aren't sure, and she is still bleeding. The plan is to pump her full of platelets and hope that these damned bleeds clot by themselves. There is no way that Mom can have surgery - her counts are way too small. I take comfort in knowing that her personality is the same and that they found them quickly. We're waiting to hear back on what we need to do, but for now, we're hanging out together.

So Pregnancy Hormones plus Cancer. I'm not in the best place most of the time. And the fact that no one wants to stress me out - it's not working. I just want to bury my head in a cold pillow and cry myself to sleep most of the time.

The amount of fear that I am living with makes me worry for these babies. I just want them and my mom to be healthy. I want her to hold them. I want her to be here for all of it. I want her to get out of the hospital and to spend some quality time with her favorite casinos. :)  I want her to go out in her own style.

Recovery

I had surgery last Friday.

It was originally scheduled for 7:00 am, but was moved to 10:30am. Not a bad deal actually. I was able to take Weston to preschool myself, and I stopped at the post office to mail invitations I had made for a baby shower. Scott even ran to the grocery store before we left at 930 to pick up Mom in Ankeny. We got to the surgery center and checked in right on time. I think I only waited 5 or so minutes before being called back into the Pre-Op area. Mom came with me, since Scott didn't seem as interested as she did. I had a great nurse named Michelle. We did an EKG, and got me hooked up to the IV. We had about a 25 minute delay due to the surgery prior to mine. The anesthesiologist actually walked me back to my OR holding my IV in his hands. It was nice, and gentle. They loaded me up on the narrow operating table, and buckled me in. Each are was buckled onto a board - I looked like I was shackled to a metal cross. No sooner than they strapped the blood pressure cuff on me, I was out. No idea what they used, but it worked. I was apparently out for an extra hour after surgery too. But it went well. There wasn't much endometriosis to clean up, but they got it as well as some scar tissue and adhesions from the previous surgery. They used only 2 surgical points, instead of 3. But man... I am sore! And nauseous. I'm on Percocet. And back at work today. Though I shouldn't be... and I will probably go home early. I'm just out of it today. Way off. Going to try lunch now... see if the food helps out at all. If not, I'm going home. Mom and Aunt Linda are there with Weston... maybe I can get a little TLC too. :)

Homonymy

Mom in the '60s or 70s on Christmas

Looking at this picture, it's no wonder that I love plaid, big hair, and more than anything, vests! I love Vests! I have 9 I think. At least 4 sweater vests, 3 suit vests, and 2 long cotton ones - one of which has a lace back and lace panels.
That being said... definition states:
In linguistics, a homonym is, in the strict sense, one of a group of words that share the same spelling and the same pronunciation but have different meanings. Thus homonyms are simultaneously homographs (words that share the same spelling, regardless of their pronunciation) and homophones (words that share the same pronunciation, regardless of their spelling.) The state of being a homonym is called homonymy. Examples include: stalk (like a corn stalk) and stalk (the act of following/harassing a person.)
(thank you Wikipedia.)

So, why the Grammar lesson, you ask?
Well, first of all, I like grammar. And everyone could use a grammar lesson once in a while. But seriously, upon reflection this past weekend, I think my Mom and I are Homonymy. We are the same, but with completely different meanings.

My parents have sold our childhood home. Their home for the last 18 years. My Dad was in the Navy until the summer of 1990. Prior to that, we moved every 3 years to military housing. So in 1990 we moved to Clinton, Iowa. In 1992, my parents purchased their first home. And it was a doozy. Built in the 1860s (I think) it was 2200 sq and 2 stories with 4 bedrooms and 1 upstairs bathroom, an unfinished basement that still had the original oil drums from when the furnace was converted from coal to oil, before our own natural gas, and no central air conditioners. It had many previous owners, the last of which was a middle-aged bachelor who started projects and then... moved onto something else. So my parents had a lot of work to do with their first home. But they (along with my aunt and uncle) did it. They made a huge house into a home. And we loved it. So... Shannon and my little family travelled back to snap some pictures of our old house and our hometown. To have something to show for the 18 years of memories that we made. We plan on making Shutterfly books to hold these memories.

Mom and Dad are scheduled to sign the papers on their new condo on Thursday, November 10th.
Scary... a whole new place to live.

Guess what? I am wearing a sweater vest today. Navy blue over a white button down... with my hair in a high (but much smaller) bun.
The Homonymy continues.

WE HAVE STEM CELLS!

Mom is doing well!

She had her stem cell transplant just after 2pm yesterday. It was about an hour late from what we were told in the morning. Which of course did nothing for Mom's anxiety. It took about 20 minutes and was an amazingly simple process.

Mom was anxious and nervous... teary all morning. She rested and we took a walk. She found a stationary bike at the end of the hall, and rode over a Mile!!!! We had a simple lunch and chatted and took lots of pictures.

There was the potential for problems - shock, even death. But luckily everything went perfectly!

Her nurses, Paula and Stephanie, stayed about 20 or so minutes after the end of the transplant to make sure everything was ok. About a half hour after that, the nurses, doctors, etc on the floor came in and sang "Happy T-Day" to Mom and gave her a big gold balloon.

She was just beaming after the sing-along!

We have been blessed so far. Now it's just a matter of not rejecting these stem cells and beating this shitty disease.

Interesting Facts:

1. You could actually see the Stem Cells travelling through the lines from the bag to the Hickman Port in Mom's chest.
2. It will take about 4 days for the Stem Cells to travel to their perfect resting place within Mom's body to everywhere that they need to be. And they get there through the blood stream all by themselves. Pretty Darn Cool if you ask me.
3. Once this whole thing is a success, Mom's blood type will match her Stem Cell Donor's, even if it is different than what hers is now! So... Mom was born as a B- (haha, B Negative), and her Stem Cell Donor is a B+. Well, after Mom's body accepts the transplant and grows her own immune system back, she will now match the Donor's type: B+. (this is just an example. We know nothing about the donor. Not even the blood type.) Crazy and Awesome isn't it?

Thank you so much for all of your Prayers and Positive Thoughts. Keep it Up!!!! I have become a true believer in the Power of Positive Thinking.

TRANSPLANT DAY

Transplant Day is tomorrow!!!

Some time between 10 am and 2 pm, Mom is receiving her Stem Cell Transplant!!!

Shannon and I are travelling from Des Moines tonight and staying at her friend's house... so we don't have to wake up so early tomorrow. I am going to miss Weston though.

If all goes well (and it will) we will be back in Des Moines by dinner time tomorrow.

Cross your fingers and include us once again in your thoughts and prayers! Thanks!

Mom update

Mom is still very week. Her Blood counts, including white cell counts, are not coming up. She has to have transfusions of red blood cells, platelets, or both every 2-3 days. She has to have these transfusions in order to survive each day. I think that is the scariest thing I have heard in months. Well, that, and Scott saying these exact words to me Monday afternoon after spending the weekend with the family, "She's wasting away."

Yeah... he said that out loud. He also told me that he's scared. He's so scared of Weston losing his MieMie. Scared of Mom not seeing Weston grow up. He voiced my fears. And yet, while he's saying this to me in the car yesterday, all I can think is What about me? What do you think will happen to me if I don't have a Mom? Who will I talk to every day? How will I survive? How will Aunt Linda survive? Shannon? Nathan? Dad? Where will Dad live? What will he do? All of this ran through my head in under 10 seconds, I swear. And then the guilt for thinking these thoughts. The guilt for writing them is weighing on me this very minute, but how could I keep it all in? I've already exploded once in my life from withholding all of my emotions; I'm not sure I could survive that again. Not with everything else. Not while Weston and Scott are here to watch.

Mom had a bone marrow biopsy on Tuesday. The results can go one of two ways. First option is that there is less than 3% cancer cells found. This means that the leukemia is still in remission and the blood count problem is related to an infection or medicine-induced. As a precaution (because this has happened before, though not this badly) the doctors have stopped all of her meds (about 17 different pills a day) until they narrow down the problem. Option number 2 is the one we all dread: Her leukemia has come back and is resisting the Chemo, etc. We're praying it's a simple pharmaceutical problem. Hopefully we will have the biopsy results tomorrow.

We also found out last week that Mom is not eligible for a stem cell or bone marrow transplant. Dr. Jameson very bluntly said that the transplant protocol will kill her. Transplants are 10 times harder on the body than a single round of Chemotherapy. Right this minute, Mom couldn't survive a round of Chemo, let alone a transplant. Every Round of Chemo is dangerous for her, so a transplant is out of the question.
Mom has fallen 3 times at home. These falls have also greatly weakened her. They have caused bruises and aggravated her hip and back pain.

She's trying to keep her spirits up. Last Saturday, we went to a Cedar Rapids Kernels game. Mom was exhausted after a day of infusions in Iowa City, but she had a great time and even made it through the post-game fireworks.

This weekend, we're headed back to Cedar Rapids to hang with Mom so that Linda and Dave can head to Clinton to continue getting our house ready for sale. Dad is working in Nebraska and can't get away. He's been told that he needs to "get his head in the game and step up" at work. He needs to get back to normal. So... working 60+ hours a week while his wife is beyond sick. Right... PSC Bastards. I don't wish this on any one, but a day in our emotional stockpile might put them in their place.

Alright... that's all for now. I ask that you please keep my Mom in your thoughts and prayers. I have a firm belief that positive thought and energy pushing in the right direction gives birth to miracles. And I think it's time for a miracle.

Mom...

So, my Mom is in the hospital battling Round 4 of Chemo.
She has caught yet another infection while in the hospital. You would think that the hospital would be a safe place. That especially the 7th floor, the Bone Marrow Transplant and Adult Blood Cancer floor or the 4th floor, which is technically the Leukemia floor. But yet, their are dust-bunnies floating around, and if you wipe up a spill on the floor, it shows how dirty the floor is. It's ridiculous. The hospital is more dangerous for her than we are. This intestinal infection is so painful for her that my dad says that her doctors have her on Morphine. But if all goes well, she should be released to home tomorrow.
And I just got off the phone with Mom. She sounds awful. She is in so much pain. And then the morphine makes her kind of out of it. There is no way she will be released tomorrow. Until they get this infection under control, I have no idea when she will be released. The sound of her today... I haven't been this scared since the first night. She was sobbing from the pain. Sobbing from the fact that she thought I was crying (which I wasn't), sobbing when she realized that she forgot Scott's birthday (he wouldn't care.) Everything hits her so much more when she is in physical pain. It's like she can only handle one kind of pain at a time. If she is being attacked physically, then she has no defense against the emotional pain. If she's battling emotions, well then she's the strongest person ever. This bitch, Cancer, is hitting on both levels at the same time. And it's hard. She is also suffering from Neuropathy. Which is when you lose the feeling in a part of your body, it can also be accompanied by pain. Mom's neuropathy is in the heels and toes of her feet. Socks even cause traumatic pain.
So... now I feel like vomiting. The feelings inside me are threatening to choke me to death. They sit on my chest, trouble my dreams, follow me around. It feels like a blanket pulled too tight around my entire body. And while I needed to express my feelings, I also need to look toward the future.
Above is a picture taken of my Mom in May. The one and only time she visited our new place in Des Moines. She was resting in Weston's room and I was showing her how I was storing my formal dresses in Weston's closet. She said that she has never tried on a true formal dress. Really? Really?!?!? So I whipped out one of my favorites. This is the one I was supposed to wear at Shannon's almost-wedding. I love it. The color, the fit, the price ($104!!!) So Mom tells Scott to stay out and gets into the dress, and she looks amazing! I have decided to give her this dress for the Cancer Prom that I am throwing for my Mom when she beats this damned disease! We're throwing her a prom (because she never went.) and we'll have a cover charge with all proceeds going to Cancer research!!! As soon as she wins the war!!! Because, we all know she will. And it just might be a beautiful raspberry formal dress that pushes her ahead.

Love you, Mom!!!

update

I made it home fine. No one called me, but it wasn't so bad. I called Scott and Anousha for some short talks. Weston fell asleep right by Little Amana, about 15 minutes from Iowa City. Not that he would talk to me either. :)
We got home around 10:30. I handed Weston to Scott, got in the shower, and then right into bed since I heard Weston asleep on the monitor. We all went right to bed. And were a little lazy waking up. But, we all got up.

Heard from Shannon that mom had a rough night sleeping. So she moved to the chair. They slept a bit this morning. But she's still in pain in her back. Waiting to see what the doctor says about the clot. She may be released with blood thinner shots that someone at home will have to give her. We're waiting to see.

Mom update

So I got about half an hour out of Des Moines when my dad called and told me to turn around, Mom was not well enough to be admitted today. I was 2 blocks from work when he called me back and said that they had decided to run some tests, could I pleased come out to IA City since he needed to leave. Ok…

I got here about noon. She’s had a chest x-ray, a CT scan, some other tests. So we sat in the waiting room. Around 1:40 her doctor stopped by… the CT Scan had revealed a blood clot, she needed another opinion and would be back. Around 1:50 the PA came by. There was a blood clot in her jugular vein, right where her port ended, right where the vein split to go up to the brain and down to the heart. Pretty much the worst place to form. The clot is large enough to cause trouble swallowing and swelling. She was admitted at 2pm. They have removed the chest port. 

Right now she is being given antibiotics and is scheduled for blood thinning shots around 8pm. Hopefully these will do the trick.

She’ll be here until this is under control. And then released to heal. And then her next round of Chemo after that.

So... Shannon picked up Weston and is driving him here. She's in the parking garage now. We're letting Weston visit mom for a bit, then he and I will head home. Shannon has overnight and tomorrow. So on and so forth until Friday. Hopefully she is home by then.

Life...

So my mom has cancer. Leukemia to be exact. I have become a child of cancer.

More appropriately, I have become my mother. 

My Grandma Stahl was diagnosed with Multiple Myoloma (a rare blood cancer similar to ALL) in 1982, she was almost 60 years old. She was given a prognosis of 6 months. She lived until 1989, when she died at the age of 66, just like her mother before her. I remember our trips to Iowa City for Grandma's visits with Dr. MacFarland. I remember holding her hand while she had her chemo. I remember walking these very same halls with her. I remember my mom and my aunt taking care of her when she was too weak to take care of herself. I remember my mom telling us of the funny things Grandma said. But everything I remember, I remember through the eyes of a child. Innocent, jaded by the pain of her loss, over 20 years later.

Flash Forward 20 years. I am 30 years old. My mom is 62 years old. I talk to my mom every single day. Just like she did with her mom. It seems natural, normal. I know that this isn't always the case. But there it is... I am so like my mom in so many ways. We're social on the outside, nowhere as close to being as self-c0nfident on the inside. We are sharp-tongued, and as equally sharp-witted. And we love with a loyalty and a fierceness unrecognizable to most. We are selective in our friends, but we keep our friends for life. Who can say that they have benn friends with someone more than half their life? Not too many I am afraid.

So, my mom was diagnosed with Acute Lymphocitic Leukemia with a Positive Philadelphia chromosome. This makes her 50-50 chance much more difficult to fight. She is covered in bruises from failed IV attempts and holding and bumping against things. Everyday she receives blood transfusions. Most days she receives platelets too. They tried to do a lumbar puncture today to drain some spinal fluid and to replace that amount with Chemo. It's important that they keep the cervical areas clear of cancer. This procedure did not work. After over 2 hours of being poked and prodded, they returned her to us in her room. She will now need a port placed in her head to access the fluid around the brain. A neurosurgeon will place the poet and her dr will administer the chemo directly to her brain. This should work. And it will occur in 10-14 days.

I am now a child of cancer. My mom could die from this. Or from  simple infection. She is on constant meds and right now is asleep - talking about all sorts of things (her neighbors, the Smiths and the Oranges are getting married. Weston needs new shoes... it goes on and on. We are leaving for home tomorrow and I'm not sure of my emotions regarding cancer. It has robbed me of so much, and now it is trying to do it again. I am hurt, scared and angry. And I need to find a way to cope.

Confirmed Diagnosis

Mom has Acute Lymphocytic Leukemia. It's not good. Here are the details:

Acute Lymphocytic Leukemia (ALL)

ALL is the most common pediatric cancer; it also strikes adults of all ages. Malignant transformation and uncontrolled proliferation of an abnormally differentiated, long-lived hematopoietic progenitor cell results in a high circulating number of blasts, replacement of normal marrow by malignant cells, and the potential for leukemic infiltration of the CNS and abdominal organs. Symptoms include fatigue, pallor, infection, and easy bruising and bleeding. Examination of peripheral smear and bone marrow is usually diagnostic. Treatment typically includes combination chemotherapy to achieve remission, intrathecal chemotherapy for CNS prophylaxis and/or cerebral irradiation for intracerebral leukemic infiltration, consolidation chemotherapy with or without stem cell transplantation, and maintenance chemotherapy for 1 to 3 yr to avoid relapse.

Two thirds of all ALL cases occur in children, with a peak incidence at age 2 to 5 yr; ALL is the most common cancer in children and the 2nd most common cause of death in children < age 15. A 2nd rise in incidence occurs after age 45.

Prognosis
Prognostic factors help determine treatment protocol and intensity.

Favorable prognostic factors are
· Age 3 to 7 yr
· WBC count < 25,000/μL
· French-American-British (FAB) L1 morphology
· Leukemic cell karyotype with > 50 chromosomes and t(12;21)
· No CNS disease at diagnosis

Unfavorable factors are
· A leukemic cell karyotype with chromosomes that are normal in number but abnormal in morphology (pseudodiploid)
· Presence of the Philadelphia (Ph) chromosome t(9;22)
*** waiting for results on this***
· Increased age in adults
· B-cell immunophenotype with surface or cytoplasmic immunoglobulin

Regardless of prognostic factors, the likelihood of initial remission is ≥ 95% in children and 70 to 90% in adults. About 75% of children and 30 to 40% of adults have continuous disease-free survival for 5 yr and appear cured. Imatinib Some Trade Names GLEEVECClick for Drug Monograph improves outcome in patients with Ph chromosome–positive ALL. Most investigatory protocols select patients with poor prognostic factors for more intense therapy, because the increased risk of and toxicity from treatment are outweighed by the greater risk of treatment failure leading to death.

Treatment
· Chemotherapy
· Sometimes stem cell transplantation or radiation therapy

The 4 general phases of chemotherapy for ALL include
· Remission induction
· CNS prophylaxis
· Postremission consolidation or intensification
· Maintenance

Day 2 in the ICU

Mom's kidney functions have improved overnight. The doctors did a CAT Scan at 2am to make sure that there weren't pockets of infection or masses in her body. She came through that clear. They have given her transfusions of pure platelets again and whole blood. She is on constant pain medication as well as other things. the bone marrow biopsy is on hold. they can diagnose the type of leukemia with the additional blood work that they have taken from the Central line port in her neck. If she chooses to be part of a research study this afternoon they will then schedule a bone marrow biopsy.
Right now she will be in the hospital for 4-6 weeks undergoing chemotherapy, etc.
We will know this afternoon exactly what she has, and what the plans will definitely be. Schedules will have to be made. rotations decided. everything is up in the air now.

another mom update

Mom has been moved to the ICU. Her kidneys are in bad shape. they've been trying to get an IV and an access line since 330pm. they finally took some blood from her foot. They are having to put in a Central Line... a surgically installed IV/Port into the artery in her neck. No one is saying, yes it's leukemia, but they aren't telling us that it could be anything else. Hospital food sucks. Especially on a Sunday.
She is having a bone marrow biopsy in the morning. we should know more then.

Mom update

Mom's platelet count dropped again.
She needs a transfusion of platelets before she can be transported to Iowa City. She'll hopefully be on the move by noon today. Just waiting for the call to leave.