The hitchhiker’s guide

#royalwedding

When I was a kid, I would often almost get what I wanted for Christmas. You know, if I asked for Barbie, I got “Darcy”. Or if a Monchichi, I’d get some other simian derivation. So when I heard that when we went on a family trip to Taiwan that my uncle was going to get one of the cousins a Cabbage Patch doll, I was beyond thrilled.

On the much-anticipated doll-distributing day, true to my life story, I arrived to find that instead of said Cabbage Patch dolls we were each given a life-sized, realistic Prince William doll. Luckily for us Prince William was a newborn (an adult-sized Prince William doll would have been infinitely more disturbing). I soldiered on cheerfully carrying my infant Prince William doll with me everywhere I went, until his blinking eyes were no longer in synch and, one-eyed, would stare at me whenever I entered my room, contributing significantly to my lifelong battle with insomnia. (I know my audience — please do not suddenly flood my mailbox with Cabbage Patch kids 🙂 ). 

All this to say that I can’t believe his little brother just got married.

In 1981, I woke my brother at the crack of dawn and we ventured into the basement to watch coverage of the wedding of Charles and Diana. In 2018, I didn’t do that (but one of my kids did). Instead, I scrubbed through video footage afterwards pretending to be a royal wedding guest while in actuality wearing my “I only like NY as a friend” t-shirt, and cried (probably poisonous chemo tears) every time Harry cried or was about to cry. Sometimes, you just need a good love story with pretty dresses, inventive headwear and flowers to keep you going.

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For the past few weeks, I hadn’t felt like writing about cancer. So I’ve been doing other things, like watching the royal wedding, celebrating our own 17th wedding anniversary, running errands when I could, and work got really busy — it was nice to do normal people things for a while.

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17 years ago, at another wedding when an American married a Brit. The American is basically on stilts.

 

Bleh

That’s what I’ve been telling people how I’m feeling since I got my fourth infusion. It has definitely gotten harder with each one — more symptoms, and even the infusions themselves are a little harder to stomach — but I think of all the little kids with cancer who just go in and get the job done — and they push me along. I can taste and smell the drugs as they go in, and it stays with me for a week, seeping out of my pores and my very being. With the loss of every eyelash I feel a bit of my humanity is pecked away, and some days, it’s hard to remember that I had a life outside of chemo. Such is the price of shrinking a tumor.

I am getting better at it. This time I brought a cold compress and held onto it when the dacarbazine went in. I’d hypothesized that the stabbing pains I got afterward were due to the drugs circulating into my hands…and the cold compress experiment worked. No stabbing pains this time! Sucking on ice chips during the Red Devil infusion seems to prevent getting mouth sores. And I eat lots of probiotic yogurt during the first week, which seems to help with the digestive tract issues.

As my friend Alison, who was captain of the first American’ women’s Everest expedition, posts about her climbing experience: “I would love to be one of those people who could say that the climb ‘wasn’t that hard for me’ and that ‘I felt strong the entire time’ and that ‘I knew I would make it.’ But I doubted myself constantly, was never very fast and was never very strong. But here’s the thing you guys: You don’t have to be the best, fastest, strongest climber to get to the top of that mountain. You just have to be absolutely relentless about putting one foot in front of the other.”

That pretty much sums it up. Next scan: June 11.

Q&A

Some people tell me that they don’t know what to say to me, or do to support me. I get it. I wouldn’t know either. And it’s so personal — I read about folks who give advice like “just show up!” and that would actually be my own personal nightmare — please do not just show up. I want to have eyebrows on when you get here. A friend suggested it would be helpful for me to share some information on what would be helpful. Feel free to comment with any other questions too.

What do you wish I knew?

This is a really strange time for me — a time where I am uncomfortably amassing a huge social debt that I know I can ever repay. I want you to know that in whatever way you are dealing with my diagnosis, I appreciate it. The depth of my gratitude is in no way reflected in the length of my response or the frequency of my contact. Know that I receive and value your messages even if I don’t respond right away. Give me a pass if it slips my mind and I don’t respond at all. And if your way of dealing with my diagnosis is that you just can’t engage right now, that’s ok too.

Best thing to do is to have low expectations of me. I might cancel plans if I’m feeling crappy. I might not respond if I’m too exhausted. I’m basically going to be the worst friend ever while I’m going through this.

What’s the best way to contact you?

Short form communication is great. If you write a comment on my blog, I see it and know you’re thinking of me — and that gives me great encouragement without requiring a lot of energy on my part (when I “like” your comment, I really mean it!). Texts are good, but know that sometime I fall behind on them, so please don’t be offended if I don’t respond right away. Emails work, but again, it can take me longer to get through all of them and to respond.

Phone is the mode that requires the most energy from me. I’m not opposed to talking on the phone, but it is definitely the most taxing of the modes of communication…and I need to be in the right mindset to be able to do it. But know that I listen to your voicemails!

Basically, reach out any way that you’d like, but if you can be generous about allowing me time to respond, that gives me time to rest and recover.

What do you want to talk / hear / read about?

I get out so little nowadays that I want to engage with anything that helps me feel like I’m still a part of the world. I want to hear about your everyday life. I want to know what delicious new thing you found at the grocery store, or the best new comfy pants you’ve found on the market. I want to see the details of Meghan Markle’s dress and flowers, or know what people with hair are doing with it nowadays.

I want to look at beautiful things. I want to hear about astonishing developments in technology. I want to see the worst memes on the internet. I want to laugh.

I’m not clamoring to snuggle up with books about death, or mortality, or suffering. I don’t want to talk about cancer all the time, or even talk about me all the time. I’m not ready to hear about your courageous friend or relative who lost their battle with cancer.

Can I visit you?

Yes, but see above. I may not have the energy to be engaged for very long. Here’s a proposal that some lovely friends put together that’s perfect in so many ways:

[Friend] and I have decided to meet up for the day in San Diego because someone we love and adore lives there and we just wanted to be in the same zip code as her even if we can’t see her. We are totally happy to spend a day with just the two of us in San Diego shopping, eating, talking, etc. If we are lucky enough to catch said loved and adored person on a good day we would be made even happier by as much of her presence as we can get. We will take her anywhere she wants (or has) to go, bring her anything she wants to eat/drink, stay for only as long as she wants whether that’s 60 seconds or 60 minutes. But seeing her is not expected, just an added treat. Think of it as flying to LA to see Beyoncé’s house  – the purpose of the journey is to worship Beyoncé via proximity. Actually seeing her walk out of the mansion to yell at the gardener would just be a bonus.
Your end of the bargain is that when you get a text from us saying we’re in town and you don’t feel up to company you reply “purple pineapple”.  That’s also the code phrase if we do see you and you start feeling tired & want to be alone. 
Depending on the day in the cycle, I can also have low immunity levels, so if I don’t give you a hug, please don’t be offended — I’m just trying to stay out of the hospital. Short walks with me are often good ways to visit since being outdoors reduces the risk of exposure, and I like to get a bit of exercise in when I can.
Because my energy levels are low, smaller groups are better, and for short amounts of time. Of course if you’re coming in from out of town I will do everything I can to make a worthwhile visit happen — but just wanted to share all the caveats.

The bright side

Benjamin Franklin

I’m about to post some pictures, and I must divulge that most of them involved drag queen levels of makeup. Most days I look like crap, and I don’t have the energy to put in the effort to either put mascara on my two remaining eyelashes, or put fake ones on.

These arrived on my doorstep a couple of weeks ago:

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I don’t know what it says about me, but I feel most like myself in the blue and pink wigs — more so than in wigs that are supposed to look like real hair. I wore the blue one for a work videoconference, which amused me (and only me) greatly.

One of the moms on our volleyball team is a photographer and kindly offered to come take some family pictures for us. This is great because just recently one of the kids asked me to send her pictures of the two of us together, and I realized that there really aren’t that many — because I’m usually the person behind the camera. For that photo shoot I decided it would be fun to have hair, and eyelashes, and even though by the end of the shoot my fake eyelashes were falling off and part of my eyebrow was erased, it felt good to look like a normal person again. But the blonde wig is really hot and sticks to my face, so not really practical for me on a daily basis.a81u0125

Which brings me to this: there are a category of wigs called halo wigs, which have hair just along the sides — like so:

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I have one of these wigs which we dubbed the “Benjamin Franklin” — and obviously, you have to wear a scarf or hat on top for it to look like you have a full head of hair.

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I am wearing about 10 pounds of makeup in this picture and the fake eyelashes are hanging on by a thread.

I have this fantasy that I’m going to wear the Benjamin Franklin the next time I fly, and when I go through security TSA will invariably ask me to remove my hat or scarf, at which point I’ll just have to say, “Well, okay…!”

Actually I don’t even have to wait for that. I wore this wig for a couple of hours when we went out to breakfast one day, and put a straw hat over the scarf to keep the sun off my face. When I got in the car, I took the hat off, and didn’t even notice that the scarf came off too. For about 30 minutes, a small but fortunate sliver of the San Diego population got a rare glimpse of an Asian-American Benjamin Franklin on the 5 freeway.

Enjoy the little things.

 

 

 

 

42 thoughts on “The hitchhiker’s guide”

  1. The last pic is just unbelievable. Beauty queen! I do like blue and red wigs. Surprisingly, the one I like the least is dark hair. Boring… And – OMG – now I know who to talk to about all things Meghan Markle! I’m a huge fan and I engage in constant fights with haters and she’s-a-social-climber theory supporters. I totally think that she’s a pretty genuine person. At least in my world she is. At first, I wasn’t sure if I liked her dress, but she looked so good that I ultimately loved it! I also hope you saw SNL episode on royal wedding. Wasn’t their greatest but still funny:)

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  2. And I’m thinking of you and thanks a lot for the tips. I often want to reach out but knowing how obsessed you’re about responding, I don’t want to impose the burden. Needless to say, I genuinely don’t expect any response. But reading your updates and your thoughts so nicely put together is always great. Thanks for doing that in your very Sandi style.

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  3. I like blue, magenta, and Chloe Kim wigs. You look sheek and fab and young in all of them. In all honesty, the black longer wig makes you look like a ….uhm… cartoon character?!? like the scooby doo character Velma with longer darker hair, and the lighter pink makes you look strange like a goth person who just dyed their hair pink. I still want to see ‘who wore it better’ between you and Sacha! Let me know if you want to take a walk around the neighborhood. Been so tired and busy but summer is coming soon!

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  4. You look like a great badass pinkie lady and beautiful “red head” in the photos. The cabbage patch baby story brought back funny memories of me with my cousins riding in the back of my uncle’s station wagon on the way to the cabbage patch hospital somewhere near Helen, Georgia. My mom says, “We are all lucky to have that one Uncle who makes us laugh.”

    Wishing you well.

    Janet

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  5. I think of you daily. You are a champion, my friend. I am honored to be rooting for you from the sidelines, wishing that I could do more from across the miles. Know that I am sending you healing energy everyday. XO

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  6. Love the pictures you look amazing in what ever you wear. Glad that the treatment is going ok, I will be so happy when it’s all over with. I’d love to come see you, but I know that it’s dangerous to be around a lot of people. And besides that I no longer have a car. On may 6 I was traveling Down El Carmelo Rd and was stopped at a red light and this kid on a F150 pickup truck hit me in the rear end and totaled my car. I had my granddaughter with me in the back seat and she was injured and I have Whip lash and back pain. The young man admitted he was texting, so I have to wait for all the insurance and so forth to get settled before I can get another car. So that’s what going on in my life, hope this finds you feeling better. Love Jane

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  7. Love the posts. We should be making you feel better, not the other way around!
    Those kids go in there and just do it, but I’m pretty sure they are all promised ice cream.

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  8. HALO WIGS!! The halo wig and blue scarf look super cute on you, despite your attempted connection of your face to Benj Franklin!!! Makes me even want to look into getting a halo wig with a head scarf! On a totally unrelated matter, the air-cleaning snake plants we recently brought into our office now makes our office smell like soil…. Maybe we should have stuck with beautiful images of a cow instead….

    Liked by 1 person

  9. I think you look gorgeous in all the photos and I wish I could make you chuckle and smile like I do every time I read your posts! I appreciate the updates as I am thinking of you all the time.😎

    Liked by 1 person

  10. I agree with Janet. You look bad ass.
    If I ever crossed you in a dark alley, I am sure you would pull some Jet Li moves, and mutter as you walked away from me writhing in pain, ‘is that all you got Feller?”
    You and Sasha are persistently in my prayers. Dallas thinks of you!

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  11. Wow! You look stunning in the last picture wearing the halo and scarf. I admire and adore your reflection, insights and humor. Keeping me smile and laugh. So thankful that you are in my life, Sandi. ❤️💙❤️💙

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    1. Love your wedding picture in black and white! Daniel and I got married in 2001 as well. My dress/hair/veil then were very similar to yours. Will have to show you our picture sometime. 🙂

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  12. You give me a laugh Sandi- good on you, girl for finding some humor in all of this. Have u seen the Silicon Valley series on HBO? really good!
    Thinking of u, dahlin’ (love the pink wig)

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  13. I am beyond honored to know that my thoughts about Everest resonated with you. You don’t always have to be strong. You don’t always have to be brave — let’s face it, those things take energy and sometimes you just don’t feel up to it. You just have to keep putting one foot in front of the other and that is enough. You are my hero (and the wind beneath my wings :-)). I love your outlook and your humor. And thank you for answering so many questions that I know a lot of us wonder about but aren’t sure if we should ask. Love you Sandi.
    PS: Cancer f’ing sucks.

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  14. Thinking about you (and the handsome bald fellow too). I may get down to SD for this consulting gig I’m doing, but I get that you may not be up for visitors.

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  15. Can I just say you’re %&*@ing amazing? Apologies for dragging more mileage out of the most overused adjective ever, but you, my friend, are. Bright like a diamond, humorous like an SNL all star team, strong like Serena. If you meant what you wrote, gear up for some stories coming your way soon. Love you lots. 😘

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  16. Love your wigs! Very Sydney Bristowish from Alias! When I told you that the cancer kids were able to get through their treatments in my attempt to encourage you, I neglected to mention that many of them vomited on me, urinated or worse diarrhea’d (fancy medical term) on the floor just so I could clean it up, kicked, hit, screamed, spat out their medicine, cried, fought. All to be expected given the circumstances. I still view them and their families as Super Stars, just like you. So go ahead and cry, scream, complain, kick, whatever you need to do because cancer sucks. Still love you all the same!

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  17. Too bad the blond wig is not comfortable to wear..that is my absolutely favorite. You look like a top model in it. And your makeup is stunning….I love your eye brows or without…think Mona Lisa…Praying for the shrinking of the tumor…6/11….

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  18. Love the post! You always make me chuckle, in between your words. And it always ends with a smile and a virtual hug that I envision sending you! I appreciate you. XOXO!

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  19. Sandi you are an inspiration to us all. Everyday that I’m at Coast or at a tournament, especially when I see the Moon’s and Kim’s I think of you and your family and the tremendous strength that you all have. The wig collection is outstanding.
    Allan

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  20. Urban Dictionary–Unspoken Rules of Being Badass: 
    1. First rule of being a badass. A badass does not talk about being a badass. Period.

    2. Second rule of being a badass, a badass does not try to be a badass or look tough. A badass simply is a badass.

    3. A badass stays true to themselves, always. This means being themselves for themselves, and not being fake to impress others.

    4. A badass does not give up. Badasses will always push themselves for the better, no matter how hard it gets.

    You’re a badass! The end!

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  21. Thinking of you and sending prayers your way. Your posts make me laugh, inspire me, and also educate. I bought a scan pan, by the way, after one of your early posts. 💗💗 Keep strong!

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  22. I don’t know how you have the energy to write so much and so well, but thank you for sharing. On more serious matters, if you are taking requests, I am voting for the conehead look – you know that great family from Remulac France? They love bacon in mass quantities.

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  23. No one can make me laugh and cry at the same time as you, Sandi. All of the wigs look fabulous on you but I am partial to the pink one! Let me know when you’re up for another impromptu walk so I can see the secret waterfall that I never knew existed! Keep on putting one foot in front of the other, Sandi. We love you so much and we are praying for you daily.

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  24. LOVE THIS POST! Yes to all of this.

    I love the blue and pink wigs too. Wish I had to guts to get one. 🙂 Love the wedding pic! ❤

    Trying to put one foot in front of the other with you! xoxo

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  25. You look amazing in all the pictures!! I wait for your posts you always put a smile on my face, you are in my thoughts almost daily and I send your way lots of prayers.. I’m going to Egypt this summer and I will bring you the pharaohs good luck charm 🙂 let me know if you would like anything else!! XO

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  26. We loved seeing you yesterday. Huge prayers for the 11th! Like we said, best news it’s all gone!!!!! We love you no matter how many eyelashes you have. :). XO K&G.

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  27. You are WAY prettier than Benjamin Franklin!! 🙂 I hope you realize that. 😉 Sandi, with every post you write, you amaze me more with your humor, insightfulness, strength and wit. I always knew you were a sweet and wonderful human being but you have far exceeded my expectations on every level. So thank you. I’m so proud to have you as a friend. I enjoy every conversation that we have even if it’s only texting or IG messenger. I would love to visit with you any time you tell me is good. How about this – if you need a friend, I’ll be there! At your doorstep with flowers, chocolate chip cookies, comfy slippers or anything that makes you feel better. Do you have super comfy slippers BTW? Like the smooshy, fluffy kind? I’m working on my gift to you and want it to be special. Let me know if you found out anything about Reiki healing and if not no worries. LOVE YOU! XOXOXO

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  28. I am sending healing and healthy vibes your way. Thinking of you lots and I am in awe of your strength and honesty. Plus, you are just an outstanding and entertaining writer. Always have been!

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  29. You are truly one of the most creative and gifted writers ever! Your posts are real, vulnerable, truthful and just plain awesome. Thank you for the part about those of us who love you but don’t know how to enter into this journey with you very well. I find I fear that only your most inner circle should be present with you so that you don’t have to converse with 2nd thru 100th level circle life stories. Just know I love you, admire you, respect you and want to be there for you. Prayer has been my way of loving you so far. I get to bring dinner or groceries to you next week. I expect NOTHING from you – you don’t even have to answer the door. Just tell me truthfully what you want and i will move heaven and earth to get it. Home made cookies, focaccia bread, charcuterie tray, store bought anything.

    Some how I don’t get your posts unless steve forwards them to me.

    Liked by 1 person

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