Halfway point

This Thursday, the 6th, my mom reached her halfway point or the lowest point, depending on how you look at it.

She is halfway through her stay at UCSF. She'll likely come home by Valentine's Day even though she'll feel lousy. Her numbers will be near normal or better than they were upon her entry, but her body will not feel like it's ready to go.

Her platelets and hematocrit were near zero on Thursday and Friday. On Friday she received two units of blood and one unit of platelets on Saturday. She had been doing well until then, walking one to two miles a day around the halls. Then she was hit with all of the expected side effects. The nausea has been particularly bad as the levels have dropped. On Saturday morning the nurses gave her a different, stronger anti-nausea drug. It made her so groggy that she couldn't stay awake long enough to eat much.

My dad and I drove up on Saturday to visit, but considering the side effects my mom couldn't converse with us. So instead my dad and I teased her a bit, otherwise we read the day-old SF Chronicle and watched some lame program on Animal Planet.

My poor mom kept apologizing to us, which is about all she could do. Although it was a bit of a wash, it was nice to lay eyes on her.

It'll be much easier when she gets home. She won't feel great, but she'll be at home.

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.

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. 

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. 

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.

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.