Thursday, January 30, 2014

On Tuesday night my kiddos said goodbye to my mom for a while. We joined them after dinner for a little brownie dessert and a three-week-early birthday celebration (for me). Sneaky, sneaky.

I watched how my girls interact with my parents, the silly things my parents do and the immeasurable patience they have as they listen to Alyssa read her hand-written story eight times. And
I get ignored, which is perfectly okay because in those moments I'm the wallflower, the outsider, watching my amazing children.

Having babies and toddlers is difficult--they need you completely; whereas, hitting 5 or halfway through Kindergarten, as our marker seems to be, comes with independence. In some ways it has me longing for that neediness, but then I remember we adopted a toddler last year in the form of an orange tabby. There is something so glorious and wonderful about the ages five and eight. Maybe it's their curiosity about the world (heck, last night they were the ones glued to the State of the Union address), the constant evolution of their minds as they learn new math or reading skills that they are excited about, or the desire to still include me.

Just this week alone I've had the following questions from both girls:
  • Who is my birth mother? 
  • Is Elvis the leader of the Elf on the Shelf?
  • Can we spend my 10th birthday in Washington D.C. and visit The Capitol? (Said while watching the State of the Union address.)
  • Mom, why are those kids crying? (They didn't move through a UNICEF commercial, eyes wide.)
  • Why is running water important to kids in Central America?
They see everything and absorb so much more than I can fathom. I see the love, the compassion, and honesty in them. I feel so lucky that I get to watch them grow. 

Tuesday, January 28, 2014

And so it begins . . .

And just like that . . . it's time to pack up and go.

My mom has been feeling well and looks great. We've been taking a walk once a day--its a nice way to connect and keep us both active. She's been home, being creative, and out and about, within reason. We even headed to the delicious little bakery in San Juan Bautista on Saturday with the kids in tow.

My mom hasn't had much news from UCSF in the last two weeks so she called to check in. They asked if she could be there tomorrow to get a pick line in and start melphalan. Just like that! One minute you're eating lunch, the next your butt is in high gear to get ready for an extended hospital stay.

BAM!, a smack upside my head--that is pretty much how I feel. It's so easy to forget (or in my case, ignore) what is up ahead. My mom and I have one of those relationships where we talk every day, sometimes several times a day. We do lunch, we walk, we sew . . . together. We'll talk or text, but knowing she's not home is the hard part for me. I'll miss her.

She's really upbeat, however, this is simply my gripe. She wants to get it over with so that she can get through the tough part and be done. I want that too. So I'll take the kids over there tonight to say goodbye for now--they'd be devastated if I didn't.

Friday, January 24, 2014

Transplant update

No news is good news, right? My mom hasn't yet been called about coming back up to UCSF for transplant. She wants to get it over with, but at the same time it'll be a pretty lousy few weeks.

She's healing well--the blood counts are up. She's still not heading out to the grocery store or running out to Costco. She's been busy sewing and coming up with craft projects. She's taking daily two-mile walks and trying her best to make this time at home as normal as possible.

Interestingly, a family friend who also has Multiple Myeloma and is getting ready for transplant at UCSF mentioned to the doctor this week that he knows of 8! people in Hollister with Multiple Myeloma--that is 8 people he has met. What if there are others?

While we know that this is an environmental cancer (not genetic), why have there been no studies done on its origin? As my mom and I were discussing this she made an excellent point: "Do I want the doctors who treat me to spend money to find out how to cure me or where the cancer comes from? I chose cure me." I certainly can't argue with that.

Wednesday, January 22, 2014

Sunday, as I was getting ready to do a quick clean in the garage, I thought about how I've come to accept mediocrity. Mind you I'm not referencing anyone here but me, myself, and I. With the onset of my hand injuries I have had to scale back drastically. It is difficult learning how to stand by and watch but the pain was such that I was forced to accept it.

Before my weekends were filled with crafting, sewing, and gardening, at the onset I was reduced to ice packs on the couch a magazine in my lap. No more pushing kids on swings, cartwheels or softball in the backyard. I've become an encouraging observer in my daughters' activities and a director in tree trimming or rose cutting. All those things I love, my hobbies robbed.

A few weeks ago we took out Samantha's half broken bed (shoddy structure) and reconfigured her room. In doing so we had to switch around the bookcases, desk, bed, and pictures. There are holes all over the walls.  The pre-injured me would have had that room patched that night and painted the next day. As it stands, there are still holes everywhere, the bookcases are still brown, and the paint still sits in the unopened gallon, and I'm okay with that somehow. 

For now my big plans, my hobbies, will have to sit in a "to do" file just a bit longer. I'm on the last leg of my hand treatment. Mediocrity is here to stay for a while longer.

Friday, January 17, 2014

Waiting for transplant

My mom was able to harvest 6.5 MILLION stem cells! The body is an amazing thing.

Pre-haircut powwow
My mom finished up on Wednesday, had the catheter out, and made it home in the evening. Now she'll stay at home for a week or two until her counts go up. She didn't need a second transfusion although her platelet count was borderline. She is healing slower than normal for her, but normal post-apheresis. She still has to stay away from people (large crowds); otherwise, use common sense.

On Wednesday night Samantha started crying during dinner. She was having a difficult time just knowing that my mom was at UCSF. I think a lot of it had to do with not being able to see her and touch her. So I texted my mom and asked that she send us a picture. Samantha's spirits perked right up once that picture of my mom came through.

Thursday was the first day in over a week that my parents didn't have to drive up to San Francisco. They slept in! My mom asked if Samantha would be willing to skip ballet that day--her hair was falling out and it wasn't going to wait.

I took the kids to my parents house to give my mom a Mohawk. Then they shaved her head. She thought it might be easier on the kids--she was right.

Samantha's turn

Alyssa's turn (with Papa's help)
Lovingly--my dad cutting my mom's hair


Touching Gammy's buzzed head!

My girls and my beautiful mom!
So now we wait until she has to go back to UCSF to receive her stem cells. Then she'll stay for a few weeks. Until then we intend to spend as much time with my mom as we can. 

Tuesday, January 14, 2014

January 14, Day 13, stem cell collection

Today is stem cell collection day!

Yesterday my mom got the catheter (port/pick line) in her neck. She said it felt like she hurt her neck and couldn't move it real well. I fully expected her to have a restless night's sleep, but she proved me wrong again.

It was a long day yesterday. My parents had to check in at 10 and wait for her scheduled catheter placement at 1, but it was between 2 and 3 when she finally went in. Placement took about an hour and then she had to go back to clinic for her Neupogen shot. All in all it was about 7.5 hours in the hospital/clinic yesterday. That, of course, doesn't include the drive up to and back from SF.

Yesterday I made stew for my family and had plenty to share, for which I was so grateful. I was able to send a pot home with my dad after their long day. I think it was about 7:30 when they finally made it home.

When I am home, working and being a mom, it's hard on me. I'm constantly wondering what is going on with my parents. I wonder how she feels, what she needs, etc. So making sure they had dinner alleviated some of my anxiety, knowing that they had one less thing to worry about.

Today they were off again, extra early, to check in. Unfortunately, the collection area is set up much like an outpatient recover room, so my dad couldn't stay there, but he could come and visit for short periods. Apherisis is only about 3-3.5 hours, so they were done around lunch. Then came the waiting . . . a few hours to determine if they had enough cells.  My mom gave 4.5 MILLION cells today! Unfortunately, it wasn't quite enough and she has to go back and do it again tomorrow. One more day . . .

She had to have a blood transfusion today to help her make the remainder of the stem cell count for tomorrow. She'll have to get the catheter out and then she'll be done for a while. The nurses were so nice--they could tell my dad was exhausted (and he's the one who drives home) so they set up a private room so he could nap.

It's been a very long day and tomorrow will be just as long. I wish I could take away the wait, the worry, the exhaustion . . . But she's almost there.

Saturday, January 11, 2014

At least once during the school week I find myself exhausted to the point that I don't even attempt to consider dinner. My typical crash-and-burn day is Thursday nights. This week it ended up as Friday.

Al came home from work, Samantha was playing on the computer, and Alyssa and I were playing Hidden Puzzle games on the couch while the contents of my purse were scattered on the living room floor. In the middle of that purse cleansing I found a gift card for Papa Murphys--hooray! Dinner!

I'm trying to be much better about budgeting this year. In am attempting to keep my exhaustion from resorting in more costly pizza nights. I don't like resolutions--I don't keep them. I consider this a habit change so maybe I'll follow through. I also figure that we'll waste less food.

I will admit that on average we have "breakfast dinner" once a week. This is the girls favorite dinner, but Al and I get tired of it. For the last few weeks I've been making quiches for me and Al. I bought quite a few pie crusts during the holidays and froze them. I have been using one recipe, modified for lactose intolerant folks (Lactaid instead of milk and Parmesan cheese instead of cream cheese). Then I throw in the kitchen sink--I use whatever vegetables we have and chopped deli ham if I'm really lazy. Al and I eat it for dinner and breakfast and any time in between. Hot or cold, it's my favorite food of late.

The original recipe can be found here:

Here is one of my modifications:

1 9-inch pie crust (Pillsbury's refrigerated crust)
6 strips of cooked bacon (or three slices of deli ham, chopped)
Half a small onion, sliced and caramelized
5 eggs
1 1/2 cups nonfat milk (Lactaid)
1 tsp salt
1 cup grated Parmesan cheese
1/2 cup partially cooked vegetable (broccoli, mushrooms, and/or asparagus work well)

Pre-bake the crust:
Preheat oven to 350 degrees.
Roll out one pie crust and transfer to a pie dish. Place pie crust in freezer for 15 minutes. Line pie crust with greased foil, shiny side down, and weight with pie weights (or uncooked rice). Bake for 20 minutes. Remove the weights and the foil, bake for 10 more minutes. Remove from oven and set aside.

Whisk together the eggs, salt, and milk. Add 3/4 cup Parmesan cheese.
Caramelize the onions until they are brown.
Par-boil the broccoli and asparagus for 2 minutes, drain and then rinse in cold water.
Cook the bacon until browned. Drain grease. Chop into smaller pieces.

Layer the bacon, onions, and vegetables in the baked pie crust. Pour in egg mixture. Top with the 1/4 cup of Parmesan cheese. Place the pie pan on a cookie sheet and bake until golden brown and center is set, approximately 35 minutes.

Wednesday, January 8, 2014

January 8--day 7 (last day out)

Today is the last day my mom will be able to eat out, go to the store, generally be in public for the next few months. Tomorrow her counts should drop too low to provide much protection.

Today is the second Neupogen shot. She learned last night that she may not need all 6 or 7 shots. It depends on how her blood work looks on Friday. If the counts are unstable, meaning too many white blood cells, then they'd stop because it could be risky to the patient. That doesn't mean she would get the catheter and apheresis earlier. She'd just get to stay home for a couple of days.

If I didn't mention it before, the catheter or pick line, is direct access to her blood. Last time she had one in her chest for several months. They used it for chemotherapy, apheresis, and any other drip/infusion she had to have. This time they'll put the catheter in her neck. Highly uncomfortable, but only required for apheresis this time.

Yesterday she spoke to a man who had had his catheter in only one day. UCSF was able to collect all the stem cells needed for his transplant in one day. Amazing!

The reason UCSF uses the neck is so that they have access to the jugular vein--the big one. This makes it easier to extract the blood. However, the patient cannot shower while the catheter is in. The patient is highly susceptible to infection, unlike with the catheter in the chest. Considering that the neck catheter is only in for a few days this should be manageable.

Sometime this weekend I'll give my dad a break and drive my mom up to UCSF so that I can see where she will be, meet the nurses, etc. I was so much more involved last time, but then again I didn't have two little girls.

* * *

I am so grateful to all the scientists, medical personnel, doctors, and brilliant people who discovered stem cell transplantation and those who work in the field today. My mom would not be alive today had this not been an option. And she would not have met my two beautiful girls who love their Gammy more than words can say. She's taught them so much as I'm sure they've taught her. So . . . THANK YOU!

Tuesday, January 7, 2014

January 7--day 6 (stem cell bank?)

My mom is funny--she makes me smile. She was out shopping today on her way up to San Francisco for her shot. She was buying birthday presents for everyone who has a birthday from mid-January through May, although in May she should be nearing normal. 

The interesting thing about stem cell transplants, even when using your own cells is that you lose any immunity you've built up. For example, if you've and the chicken pox and are now immune to the disease you may no longer be immune to chicken pox. The same goes for every darn virus you've ever had. That part stinks. 

But think about it . . . medical science has come so far that you can use your OWN stem cells to heal your own cancer. Beautiful and wonderful. Now I just wish that we could make a stem cell bank the same way we make a bone marrow bank. I'm not talking embryonic stem cells. I'm talking about the stem cells--the new cells--that our bodies produce every day. I would gladly give a million bag-fulls of my stem cells if it could save someone or prolong their life. 

This weekend there is a bone marrow donation drive in our town. I'm going to be in that line. What about you?

Monday, January 6, 2014

January 6--Day 5

Maybe my memory is imperfect but my mom seems so much better this time. True, she is much healthier than last time, but I'm still very surprised. I expected her to be exhausted.

This Sunday she wanted me to come over and help with a computer issue. I was very surprised when she was in her sewing room preparing to work on my last curtain panel for the family room. She had been out to the airport for lunch with my dad and to the store a few hours before.

I was thinking about the differences between this time and last time, and this, while very heavy chemotherapy, feels much more like one of her maintenance therapies.

Tomorrow my mom will start the Neupogen shots. She'll get one shot each for 6 days. The Neupogen will increase her blood counts quickly. If all goes well she'll start apheresis (stem cell collection) next week. Then she'll get two weeks off to rest and the transplant begins. Transplant is the riskiest part, of course.

She'll have to stay at USCF for 2-4 weeks, until her counts come up enough for her to come home. Then she'll have to be home with limited human contact--no family gatherings, no grocery store shopping, no visitors, etc.

*  *  *

This weekend my mom had pictures of her hairless head from the last transplant. The girls had a hard time at first. It scared Samantha a bit, but on a second look they were curious and fascinated. They brought the pictures home and hung them in their rooms. So when she does loose her hair it might be easier for them. 

Friday, January 3, 2014

January 3--Day 2 (post-Cytoxan)

My mom and dad got home around 8 last night. Unfortunately, my mom did end up getting sick as soon as they got on the highway. That was disappointing for all of us.

Because this type of chemotherapy drug can cause serious damage to the kidneys my dad kept a timer running all night. Every two hours he woke my mom up so that she could drink water and go to the bathroom. Not a real restful night, but the alternative is less than ideal.

I was surprised this morning when my mom called. She sounded fine. She said that she felt remarkably well, almost normal. And we (girls included) can see her this weekend before the drug starts knocking down her white counts!

* * *

I didn't sleep too well last night--I worried all night. I kept saying to myself They're fine. They're adults and you are an adult. They can handle this--it isn't the first time.  I did get up and check my cell phone a few times--I don't typically leave it on at night.

That got me thinking, however, that we need to come up with a plan. If my dad needs me in the middle of the night I need to know that he'll call me. He needs to know that I'll be there no matter what.

Last transplant they went somewhere without telling me (yes, they're adults), but I panicked the entire time I couldn't not reach them. My dad was also in an accident a few days after her first chemotherapy and I had to help to take care of both of them. He was on crutches and in pain and she was too weak to do much. It was surreal, but we did it with the help of my grandparents.

* * *

My girls were not born last time so the concept of hair loss is foreign to them. Alyssa (5) asked a very logical question of my mom, "Where does the hair go?" The last two days she's asked me if Gammy's hair fell out already. She doesn't understand that my mom will look normal today but in a week or so she'll be bald. My husband suggested that the girls ask Gammy if she had a picture of her without hair. She found one this morning that we'll share with the kids to help answer their questions. I'm curious what their reaction will be like. 

Thursday, January 2, 2014

January 2--start chemotherapy

January 2, 2014

My mom and dad headed up to UCSF today for Cytoxan, the chemotherapy drug that will start the transplant process. My parents stayed up there for most of the day while they infused the drug along with saline. This particular chemotherapy drug is tough on the kidneys. My mom will need to drink 2 liters of water a day for the next two days to flush her kidneys. If she cannot then she'll have to go back up to UCSF to be admitted. (She's been practicing--that is a lot of water.)

Unlike the last transplant (10 years ago), we texted throughout the day. If she was sleeping, my dad texted; if my mom was awake then she texted. She ate well and was not nauseated. She said that she felt woozy, but otherwise okay.

Thankfully my mom kept meticulous notes on the treatment last time and notified the nurses that either the anti-nausea drug or the Cytoxan gave her the "worst headache of her life." I took the same anti-nausea drug during both my pregnancies and not once did it give me headaches. We talked and determined it was likely the Cytoxan. So the nurses were prepared. They wanted to keep her comfortable. So my mom had some caffeine via coffee (not a drip). It seemed to help. She is dealing with a reasonable headache. (Yay, for small victories!)

This time my mom received a medication to help with the after-effects of the chemotherapy. She received a drip earlier tonight and will take pills for the next dose--they're to lessen the effects of the drug from bone pain to sickness to anything else.

It's amazing how far stem-cell transplantation has come in the last ten years!

And . . . I must admit that being able to text throughout the day helped me cope while she was 90 miles away in the hospital.

Wednesday, January 1, 2014

January 1, 2014 . . . I spent this afternoon sewing curtains for my house with my mom. It was nice and bittersweet. Tomorrow she heads off to UCSF to get her first dose of chemotherapy. In a couple of weeks she'll lose her hair and in a month she'll have a stem-cell transplant.

It's rough for all of us. Right now she's fairly healthy, tomorrow she won't be.

My girls spent a few minutes getting in last minute hugs. They know that they won't be able to see her for a while. It's especially difficult because we live around the corner from her--literally four houses away.

Technology, however, will be our saving grace. We'll be trying to FaceTime with her as much as we can from UCSF or from our home to hers.

I'm so thankful for medical advances--she can use her own cells to save herself. But I can't still the worry/anxiety/sadness that I feel. I can see it in my dad's eyes when he looks away or tries to casually clear his throat or looks at me with red eyes.

Cancer sucks.