6 Weeks Post-Transplant

My mom is doing well. She's able to venture out to the store in off times. We've been taking 2-mile walks daily. She's getting her hair back slowly, too. Pretty soon the maintenance side of this whole transplant will be in place. She'll have to have the Aredia every three months and then Revlimid, maintenance chemotherapy, sometime after that. I can't recall how often she'll need that.

She hasn't had the sickness like she did after last transplant, but there is a certain amount of sensitivity or taste-shock (I'm not sure what to call it) that comes along with it. Taste is very intense post transplant: mints taste really strong, spicy things are magnified, and sweets are beyond intense.

We're planning our annual girl trips: Arizona and Las Vegas already. I was surprised when my mom asked if me and the girls were still planning to go see my Grandparents for Easter break--she wants to come too! I would have taken the 9-hour drive without her, but I would much rather she come. This has been our tradition for at least 4 years now and I can't imagine missing it. While she won't be able to come join us in the water for the daily visit to the swim center, I'm hoping that she'll be ready to jump in and play when we head to Las Vegas this summer.

My kids and I have been confined to home this week. They brought home some childhood disease and decided to wrap it up for my birthday. Yay! The kids were excited because I had to make a grocery store run yesterday. We made it two blocks before Alyssa started coughing and couldn't breathe. So we turned around and I gathered up the inhalers and administered them. It's that time of year when I have to carry a nebulizer in the car and inhalers in my purse. And here I thought we lucked out this year.

As you might have figured out that means that we can't go anywhere near my mom or dad. She's a bit blah, which is to be expected, but I would love to at least take a walk around the block with her. Not going to happen for a couple of weeks I guess.

For now my girls are playing nicely while I continue to work. It's challenging to have to sick kids home and two-hour conference calls. Boy do I love my mute button. Now that they're older they can handle being alone for two hours; we've raised them well enough that they understand boundaries and how to behave when mom and dad aren't looking.

Home again

Thursday of last week my mom came home from UCSF. Her numbers went up exponentially from Wednesday to Thursday (from 10 to 67 on platelet count, for example). She got the OK to come home. She was so excited.

In the hospital, she was expected to get at least a minimum of 1,000 calories a day, which she was barely hitting. At home, however, she's a champ. I bet she's getting 1,000 calories at breakfast. Now that she can control what she eats and eats what she wants, she's doing much better. She's been getting back in the grind slowly, with lots of breaks in between.

My kids decided to go and get sick this week with some respiratory virus and so it will be a while before I get to see her. I'm bummed, but more that my kids are sick with no end in sight.

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.

Happy Birthday--transplant day

Yesterday, at about noon, my mom received her cells. She received them over a 45-minute period. There was no violent illness this time, just a funny tickle in the throat that a hard candy cured. Last night the nurses came in singing "Happy Birthday" and brought my mom a cupcake. That was day 0.

A stem cell transplant is a reboot. Today is Day 1. On Day 6 my mom will start Neupogen shots again to help produce more cells. She'll bottom out, as they call it, be the most vulnerable about days 8 - 10. They want to keep ahead of that drop by administering the Neupogen.

She's in her own private room, where she'll stay until she gets to come home. She's near another man from Hollister, and they'll get to visit one another while they're there.

I felt down yesterday and I realized that it was because I couldn't be there while she got her transplant. It's something to be celebrated and she did it alone this time. My brother and sister in law were able to go visit yesterday afternoon, which seemed to perk her up, too.

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.

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.

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

Gel!

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. 

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.

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!

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.

2013 was a full year for our family: introduction to theatre for Al and Samantha, ballet recital, dancing in The Nutcracker as a family, and the lead role in a dinner theatre performance for Al. Then we have the not so good parts: Al laid off for a bit and my hand issues. Thankfully Al's unemployment was short lived. All in all it was a busy year of firsts.

We have decided to make 2014 a quieter year--a year about family. We'll be skipping The Nutcracker for the first time in three years, and after Harvey finishes there will be no auditions for a while.

So we'll celebrate Al's birthday on the 31st and on January 2nd we'll flip a switch as my mom prepares for another transplant. 

I've mixed emotions about this; we all do. She's not sick now, but healthy, which is why this is a good time to do an autologous stem cell transplant. To be sick when you aren't sick won't be fun. We are also trying to prepare the kids for the realization that they are going to see very little of her over the next few months. 

Ten years ago, after the first transplant, my mom had 5 years without a need for any further treatment. We're hoping for the same this time. And thankfully, the transplant will be much easier this time. My mom will not have to endure four to five rounds of chemotherapy. She'll have a short dose on the 2nd and another right before they re-introduce the stem cells back in her body. The whole process from preparing the cells for extraction (apheresis) through the official transplant will likely take only a month. Amazing! 

I'm so thankful for the hospitals and specialists in our area that specialize in Multiple Myeloma and stem cell transplants. If we didn't live near the Bay Area, I can't fathom what her options would be. 

And my mom . . . she's so strong. I'm so proud of her and so thankful that we are and live so close. 

Here's to a healthy, happy, and family-centered 2014! Cheers.