Random Thoughts

  

I had a wonderful Christmas with family and friends, and now am getting ready for my next hospital admission on Wednesday. I have been meaning to post, but don’t really have a complete topic to post about, so here some thoughts and things I am processing.

• I am sleeping better (hence the lack of posts), which is a good thing! I think now that I am about 6 or 7 weeks into this I am starting to mentally adjust to the idea that I actually have cancer. I don’t know if that mental adjustment is good or bad for my mental health, or like everything else, just is what it is. All I can do is do the best I can every day, which I am very thankful is pretty good most of the time.
• Having cancer sucks! Not to state the obvious, but just when I think I have a routine down and I know what to expect, cancer will throw me a curve ball and I will end up in the emergency room at 3 am on Sunday morning with the worst headache I have ever had. It ended up being not that big of a deal (side effect of the lumbar puncture and dehydration), and now I know what it is like to take two doses of liquid morphine with my head packed in ice… Not everyone can say that! 
• I’m dreading going into the hospital again. I shouldn’t complain because it really could be so much worse… But I really don’t want to be there. It is so much more mentally and physically exhausting, and the constant monitoring of everything from vital signs to urine output to blood work is enough to drive anyone crazy! 
• My tastes have changed slightly. So far, I only notice it when I drink water. I get a weird after taste, making it unappealing (explains dehydration above).  I’m drinking flavored water, tea, soda, bubbly water to try to keep hydrated, but it is definitely a challenge, and I’m hoping this isn’t a sign of more changes in my taste buds to come.
•  My hair is VERY thin, like noticeably weird looking now. I have gone out in public in a wig twice. I feel super awkward at first, then don’t really notice after a while. It is nice to feel more feminine than my short haircut, and I think it makes my facial swelling less noticeable. That in itself makes me feel more like me. I am thankfull that I have the option of blending in with a crowd.
• Taking care of a 1 year old is a full time job! This I already knew, but can really appreciate this week because our daycare is closed. I love spending lots of time with Bea, but boy am I ready for bedtime when 7pm comes around. It is very hard for me to admit to myself that I am not really capable of taking care of her alone all day. Tom and the grandparents have been great, I just don’t have the energy I used to have. 
• Sick babies are no fun! Bea still has a cold (or possibly croup), which is making my normally good sleeper into a barking seal at night. Poor little thing, it breaks my heart to hear her cough and not be able to do anything about it! Also, I am freaked out about limiting my exposure to croup (impossible and already too late, I’m sure), but it is giving me something new to worry about.
• I miss work! Unexpectedly, I have been so busy I have hardly had a chance to be board, but I went to my office end of year party, and I miss both the people and the routine. I want to be there doing my job! This is a great reminder that I am so blessed to love what I do, that my treatment will be relatively short, and that I have a job to go back to.
• The new Star Wars movie was awesome! It was exactly the right blend of nostalgia and new characters/plot, and was a ton of fun. It was a great way to escape from everything for a few hours!

Guest Post – Wednesday’s with Del

 My sister and brother in law, Christina and Ken, arrive at 7:30 am every Wednesday (which is no small feet considering they live in Freemont), take me to either out patient treatment or my hospital admission, and then spend the rest of the day distracting me with games, food, and laughter. One of the only good things about having cancer is spending a lot more time with friends and family, and my Wednesday’s with Christina and Ken definitely fall into that category – I am so blessed to have such wonderful support!  Christina wrote this post two Wednesday’s ago after they spent the first day of my last hospital admission with me. 

Wednesday’s with Del, by Christina del Villar
12/17/2015

You’ve heard of Tuesdays with Morrie? Well Ken and I have Wednesdays with Del (and by extension, Tom, Bea, my mom and a slew of other friends, family and total strangers). It’s a special day for us, starting at 0’dark Jack Frost, when we pick Del up and take her for her “spa” day (or days depending on the treatment du jour). Once there, it literally takes several hours to admit her and get her treatments going. “On a scale of 1 to 10 how pukey do you feel? How is your pain level? Has anything changed? How do you like the color and design of our peek-a-boo gowns?” (Very different from the peek-a-boo gowns you see on the runways of Paris or in Hollywood I might add.)

Once settled, we can get down to business. There is no shortage of activities, food, conversation and visitors (hey, she’s the one who said she didn’t want to be bored). We rotate through deciding what to have for breakfast, games, knitting, what to have for lunch, coloring (yes, adult coloring books are all the rage this Christmas season. And if you visit, you will be expected to participate), more knitting (we won’t ask you to participate), review of our Christmas shopping list, playing princess, deciding what to eat for dinner, etc. etc.

This past weekend Ken and I went to seven (yes, seven), different events. This included a few birthday parties, several Christmas shin-digs (who wouldn’t want to dance with the Sugar Plum Fairy? Ken in a tutu = priceless), and even a night at the SF Symphony with Jimmy Stewart. At every one of these events, I heard myself say over and over again to friends who we hadn’t seen since last year at the same time, “Geez, has it been a year since we saw you last? We need to get together more often! Let’s not let another year go by. Ha, ha, ha, I think we said the same thing last year.” Um, yeah, seriously said that about 15 times.

But this year, I really meant it. Watching Del and seeing the level of support she has is truly astonishing. It is a testament to her and Tom, and the friendships they have built up over the years. Sure we get busy with our jobs, family and life. But when push comes to shove, when life throws you a sucker punch (aka cancer), these are the folks who are going to be by your side, helping you through whatever it is that is going on.

When we got home from Wednesday with Del, our Christmas card from the Bosses was waiting for us. (Seriously, Del is a machine!) In it she wrote “One of the only good things about cancer is seeing a lot more of you guys.” Yay!! Wait! What? Crap, did it really take Del getting cancer for us to spend more time with her??!

I vow to do better in 2016 and spend more time with family and get together with old and new friends. Don’t wait to have that dinner, drinks, coffee, pedicure, walk, bike ride, movie night, game night, (add your activity here_____), with your friends and family. Life is too short!

 

427!

I am almost through my second hospital visit, which has gone much like the first. I feel like crap, but I’m getting through it. 

I spent at least half of the first night I was here writing another pity-party blog post in my head about the physical changes and how hard it is to not recognize the person looking back at you in the mirror… Bla bla bla. I was working on the post, trying (and failing) to come up with a new and interesting angle on Thursday morning when my oncologist came in and gave us some great news.

My HGC levels are down to 427 (from 379,000) and he thinks it will take as little as a few more weeks to got to zero (they will treat me until I get to zero, then for 8 more weeks to be sure). And just like that, I don’t care about the physical changes anymore. No hair? No problem? Swollen chipmunk face, who cares? This cancer now has a tentative expiration date. 

I didn’t realize how much I have been hedging my own bets in my head. Not letting myself think to much about how long the torture treatment would continue because it felt like some far off date in 2016. But 10 or 12 weeks feels so much more finite. I can count it out on the calendar and it feels just around the corner. I can stand anything for 12 more weeks!

Last night, while I couldn’t sleep, I left myself think about the “after” cancer for the first time. I’m going to get to go back to my regular life, working, and spending time with family and friends, worrying about things as trivial as what to make for dinner, or what to do over the weekend, and I cried tears of pure joy.

I let go of the breath I didn’t know I was holding, and it is such a relief! 

I Am The Lucky One

  

Today is my husband’s birthday. Oh how I wish I could make my usual show of trying to spoil him just a little, making sure he got out on a mountain bike ride with his friends, and taking care of the baby so he could have a few beers at the pub, and maybe even stay out past *gasp* 7:30 pm. 

Unfortunately, those simple wifely things are not in the cards this year. Instead, I’m being admitted for another hospital stay. A hospital stay that means he will have to spend the next four days coordinating care for Bea, taking care of all household chores, and visiting me, all while working, and for that I am sorry.

Tonight, as I listen to him quietly sleep next to me on his birthday, I am reminded of one of my favorite lines from our wedding vows, “marriage is risking who we are for the sake of who we can be.” When I wrote the words to our ceramoney, I was thinking big changes, and big risks. Supporting each other through career changes, financial trouble, raising children together, and yes, even dealing with health problems. What I didn’t realize was that while those things are all true and important, it is the little things that really count. 

Every day we help, compromise, and support each other in small ways. He volunteers to give Bea her bath because I just don’t have the energy that night, or I fold and put away the laundry that he said he would deal with a few days ago, but hasn’t found the time yet. We both ignore the messy house or the project that needs to be done to relax together, have a drink, and talk about work, or the world in general, or nothing at all. These quiet moments that pass without notice are our true marriage, where we give up pieces of ourselves, becoming who we are together.

Now, while we are dealing cancer, and the million complications, both large and small that need no be navigated, decided, and figured out, I am so thankful that I risked my life on his. 

Neither of us expected to be going through a major health scare so soon.   I am too young, it just isn’t fair. But through it all, I will remain thankfull for the good things and the small moments. Yesterday’s afternoon dog walk in the sunshine, that he remembered to buy dish soap (which I have forgotten on two separate trips to the grocery store), as well as the shared moment of relief when the baby is finally asleep, and we can have a few minutes together. I am thankfull for all of the million little things, day in and day out, that make us stronger together. 

Happy Birthday Tom. I do hope you find the time to get out on a bike ride and have a beer today. I love you, and I will always be the lucky one. 

Hair Today, Gone Tomorrow

  My hair is really failing out now. The shower looks like a small animal was sacrificed after I’m done, my pillow is covered in hair in the morning, and every time I touch my head, my hands come away full of hair. 

I’m thinking about taking a buzzer to it, to avoid some of the mess, and combat the cancer pattern baldness that is starting to develop (hair is much thinner on the back of my head where it rubs against my pillow at night). The only problem with this plan, is that I want it to be shorter, but not a full buzz cut, and we have lost all the guards that came with out clipper – except the left ear taper guard…. Which I’m sure would lead to a very interesting look cancer patient or no.  My guess is my laziness for dealing with this particular problem will out last my hair, which probably only has a few showers left anyway.

Honestly, I think I am ready for it to be gone.  It will almost be a relief for the whole messy process to be over, and then I can move on to dealing physically and emotionally with what I look like as a baldy. I have never seen my scalp, I’m semi interested in what it will look like.

Many people have asked what I plan to do, wigs, scarves, or hats? The answer is, I don’t know yet, probably a combination of all three. I know there will be days when I will just want to blend in with the crowd, and there are wigs for that. At least this will be an opportunity to try out a few new hair styles. Maybe I’ll find out if blonds really do have more fun after all.

An Exercise in Flexibility

There is so much in my life that is out of control right now, that I have found myself fixating on the little things I can control or manage.  Most notably, that has been my chemo schedule.

When I was discharged from the hospital, I thought we had a clear plan for my upcoming schedule.  Outpatient chemo Tuesday and Wednesday every other week.  Then inpatient Monday – Thursday.

Tom and I started organizing our lives, and our helping hands calendar, and Bea’s schedule around what we thought was going to be our new way of life for the next few months.

Then everything changed again.  My outpatient chemo has been changed to Wednesday’s only, and at a much larger, and more sick-making dose, and then my hospital admission will now be Wednesday – Friday or Saturday every other week.

The change made me so mad!  I was convinced that the doctor made a mistake, or the scheduling staff made a mistake, or somehow something went wrong.  I now realize that I don’t really care about the schedule.  Monday or Wednesday doesn’t really matter if your job is fighting chemo, it was the slipping away of one of the only things I felt like would be predictable.

I have no control over this cancer.  I have control over many things in my life, including how I respond to this terrible thing that is happening to me.  I need to take a deep breath, know that this is temporary, surrender myself to the million changes that are happening and will continue to happen and move forward with as much grace as I possibly can.

In other news, the new Wednesday chemo is way worse than the Monday – Tuesday outpatient chemo I had 2 weeks ago.  It is a much higher dose a kind of chemo that the doctor said, and I quote “makes everyone pukey”  So far, I have managed to avoid puking due to a ton of anti-nausea drugs (and a new even larger does of steroids – yay), but for really the first or second time in all this I feel like shit.  I just want to climb in bed and sleep until I feel like myself again.

My only consolation is that if I am having a bad day, I hope my cancer is having a much much worse day.  Pack your bag cancer, there is no room for you here!!!

Complicated Feelings

 Today, my beautiful daughter turns one. She is the greatest thing Tom and I have ever done, and I am amazed by her daily. I love that I get to be her mom, watch her grow and change, and turn into the person she will become someday. Her personality is becoming more and more her own, and it kills me when she thinks something is fun or funny and her cute little smile lights up her face. I love her in a way that I never could have imagined possible in my pre-baby life. 

That being said, I’m not going to sugar coat it my feelings about being a mom. Having a kid is hard. They need everything from you at all times. All your energy, all your time, all your money, all your attention, everything. They don’t care if you had a bad day at work, are exhausted, have cancer, or just need a break. They need you to dig a little deeper, find the energy you didn’t know you had, and give them the attention they need. And the strangest part is you love them all the more for it. 

Even before my diagnosis, I would fantasie about my pre-baby life, full of sleep, free time, freedom and disposable income. Drinks on a Tuesday? No problem, lets have two. Impromptu weekend getaway? Sure, where do we sign up? Plan a day that involves more than two errands and isn’t oriented around a tiny dictators nap schedule (which they probably won’t stick to anyway) – yes please! 

Then I got diagnosed with cancer. A cancer (or at least the rogue fetal cells) that are also having a birthday today. I can’t help but occasionally think that if I had never had a baby, I wouldn’t be going through this now. I am strong enough, and positive enough, and extremely well supported by friends and family, and I WILL get through this, but I wouldn’t have to. I could have gone on with my comfortable, full, happy life, never knowing the highs and lows of having a child or fighting cancer. 

Right now, Bea is my greatest joy and sense of strength, and also my greatest challenge.  She needs so much from me all the time, and some days I just don’t have the energy to keep up. I do my best to make sure I am rested and ready when she gets home for daycare, so I can just be her mom for an hour or two before bedtime, but she knows something is different, and is going through a clingy faze, and most nights my relief is palpable when bedtime comes. 

The hospital stays are the worst. Tom or my parents are great at bringing her by one or twice a day for a short visit so I get a chance to snuggle and play with her, but the hospital isn’t an ideal place for her to be. No one wants her on the gross hospital floor, so she is pretty much confined to being held or on the bed, and if you have ever spent time with a one year old, her patience for that doesn’t last long. I basically don’t see her for four days, and I feel life I am missing so much!

I remind myself daily that I didn’t just have A baby, I had MY baby. My sweet, silly, goofy little girl.  None of this is her fault, but I sure wish I could press the Bea pause button, focus on KILLING this cancer, get all this time back with her.

Beating cancer is my job. I need to focus a little more on myself right now, so that I can be a mom for Bea’s whole life, but I’m missing things, missing her, and it is hard and complicated. 

  

Monday Funday

power breakfast before my big day out

My diagnosis and beginning of treatment happened so quickly that it didn’t leave a lot of processing time. On Friday 11/13, I had more or less a normal day at work, and Saturday morning at 9:00 am I was admitted to start chemo. Aside from the shock of adjusting to having cancer (still working on it), I had to adjust to the realities of being a cancer patient. 

I went from being a working mom, over sheduled with not quite enough time to do it all, to someone who needed to be driven everywhere, visited,  cooked for (so far, best part about having cancer!), and looked after. It has been quite a mental shift. My husband immediately took time off work, which was great, and meant that he was always available to help in a million ways. But sometimes I just need a few minutes alone, and I just want to do it myself! 

Today I am getting my wish. Sunday’s (and Monday’s on out patient weeks) are the furthest days from my chemo treatment, and so far the days I have the most energy. Today is also the day Tom is going back to work, and I have convinced him I feel well enough to do a bunch of errands – and I even get to drive myself (I know I sound ridiculous, but I have not driven in over 3 weeks)!

I have set loose but ambitious goals for the day, and have no problem heading home early if I get too tired. 

Plan for Today:

• Drop Bea with my parents
• Lab work at Kaiser
• Grocery store
• Post office
• Target to return something and find flip flops for gross hospital floor/shower
• Trip to the mall to return something and do a little Christmas shopping 
• Pedicure (time permitting) to reward myself for going to a mall between Thanksgiving and Christmas… Even on a Monday 
• Home in time for a nap before Bea gets home so I have the energy to be a mom for a few hours this evening

This is exactly the kind of list that would have stressed my out a few weeks ago, and now I’m excited to do silly errands… My my what a difference a few weeks can make. 

I’m sure I won’t accomplish it all, but there is familiarity and even comfort in having a plan for the day, and a slightly ambitious list to work on. I’m looking forward to being the old me, even if it it is just for a few hours. 

Vanity

  I have never really considered myself a vain person. Sure, I have my moments, but as most of you know, I’m a pony tail and jeans kind of girl. Most days I would rather sleep an extra 20 minutes than get up and do the whole hair and makeup thing. I’m generally pretty comfortable in my own skin – flaws and all, but over the last 48 hours my body is changing in unexpected ways, and it is making me self consious and uncomfortable.

My hair is starting to fall out.  I have been expecting it, and feel reasonably mentally prepared for it it go. What I didn’t expect was for my  physical appearance to change in other ways. My face is swollen and puffy. I’m not sure if it is the chemo, the steroids of some combination of the two, but it is noticeable enough to change my face shape. I am startled every time I look in the mirror. My skin is extremely irritated, scaly and tender and breaking out all over. My gums are starting to hurt, making even water somewhat  unappealing. 

While I have already lost some weight, my body feels oddly round and puffy. my stomach protrudes in a way it didn’t before. My whole body is sore, and I move with the pained slowness of a much older person. 

I was expecting to feel side effects from the chemo, I never expected for my physical appearance to change so dramatically, and so quickly. 

We had friends and family come over today to celebrate Bea’s first birthday. While I was excited to see everyone, and mark this important milestone in my daughters life, part of me didn’t  want to be seen. I didn’t want people to see the physical symptoms of what is happening to me, the proof that I am really sick, and everything is not business as usual. 

I want to hide from this a little longer.

Treatment Plan

   
 I am now home in my own bed after an all inclusive, 3 night, 4 day stay in the hospital.  What just a few days ago seemed so overwhelming and scary, now feels like it will be routine and mundane.  I would not say I am looking forward to my next hospital stay, but there is a certain amount of comfort in knowing what to expect.

The three most difficult challenges are sleep, boredom, and baby Bea (seeing her for only brief  visits once or twice a day, instead of being home and being her mom – but that is a topic for another post entirely). I will develop strategies and get better at all three. 

The current treatment plan is  an every-other week cycle. I will have out patient chemo on Tuesdays and Wednesdays (starting 12/8), then have Thursday -Sunday off, and then I will go back into the hospital from Monday – Thursday (12/8 – 12/11) for inpatient chemo. This schedule will continue until my HGC leveles are essentially zero (which they expect to take 10ish weeks), and then they continue for 2 additional months just to be sure. 

It feels good to have a tentative game plan, but right now that 10 weeks and 2 months feels like a REALLY long time from now.  I know focusing on one day/hour/week at a time is the only way I’m to get through it, but man, that is hard for me! 

Thank you to everyone who came to visit, called, texted, facebooked, and sent good thoughts. It all helped me get through those long days and nights!