Homebound

Well, it’s time to face it.  My pain level is so high, my energy level so low (aided and abetted by the pain medication, chemotherapy, and other drugs), and sitting is so uncomfortable (a batch of cancer cells sits on my spine in what must be a lump, pushing on me when I sit normally) that I’m just not getting out much anymore.

Add a sick little boy to the mix (just the crud that’s been going around the schools), and none of us have left the house for days.

But are we really missing much?

Our groceries come to us via Peapod.  News of the day is delivered via TV, internet, or dead tree on the front doorstep.  Mail moved to email and automatic payments long ago.  Movies are easily streamed, and even my prescriptions can be mailed to me (although that requires a bit of advanced planning and recurring prescriptions; since mine have been changing a lot lately (more pain meds), we fill scrips on the way back from treatment).  My hairdresser cuts my hair out of her home, near the school, and her cuts are even better than the fancy ones downtown.  I can order anything I need through the internet, including clothes from Lands’ End and Christmas presents from Amazon.  With Amazon Prime, I can even get a razor delivered in 2 days, as I learned from Stimeyland and her mother one day this summer.

I can browse stores and ideas via Pinterest, buy via store web sites, try on in my own living room, and send back what doesn’t fit or flatter.  The boys and I got our fall outfits this way, and it’s actually been rather fun — particularly without the whining of physically visiting store after store.  There are few things that we can’t do via internet, aside from my cancer treatment — it turns out that even my pediatrician makes housecalls if a child gets very sick on the weekend (what a surprise!  But it’s easier than opening up the office, he said, if you both live nearby.  It was so nice for us all to be able to be there for his sick appointment, instead of worrying at home while I waited for my husband and son to return).

And as far as social media, a culture that I adopted out of necessity after my cancer diagnosis and treatment in 2007?  Well, both new and old friendships are alive and well using Facebook, Twitter, and our blogs, along with phone calls to keep up with the everyday.  I used Second Life to attend conferences I couldn’t attend then, reveling in the freedom I suddenly had to talk to other people I knew from around the world while our avatars stood in the same room together, listening to panels and enjoying virtual wine and cheese.  It didn’t have to be that complicated, of course; now we know that Ustream works just fine for panel discussions, and WebEx for smaller meetings.

I even have a groovy new tablet computer called the Kindle Fire that allows me to do some social media tasks (email, Facebook, blog reading and commenting) from from bed without the excess heat and weight of a laptop when that angry spot on my spine acts up and it’s impossible to sit too long at my desktop in the room next door.   It’s larger interface is perfect for blog reading and commenting is a breeze with the virtual keyboard and memory functions – a huge improvement over smartphones.

The Fire also entertains me, bringing web sites, ebooks, real books, tv, movies, music, Suduku, and crossword puzzles right to my bedside without the startup time of a laptop or the heaviness of its footprint.  It’s a new generation of accessibility – as I was happy for my laptop in 2007, I am grateful for my Fire in 2011.  As it turns out, there are workarounds after workarounds and we’re doing pretty well, all things considered.

I do, however, miss a few things quite a lot.

  • I miss going out with my friends.  Seeing many of them over at The DC Moms and on their own blogs or Facebook is awesome, but it’s just not the same.
  • I miss greeting the other moms at school dropoff and pickup, exchanging smiles and good wishes for the day.
  • I miss going to church with my family, little heads resting on shoulders and valiant little boy attempts next to me to sing the morning’s hymn.
  • I miss going to work, cheerfully saying hi to colleagues in the morning and brainstorming together over lunch, even though I still can do my work here, at my desk, or from bed if necessary if the pain is too high or poorly controlled.
  • I miss taking walks through the park with my little ones, although I suspect I did that more when they were very little than I might today, with 7 and 5 year olds.  Still, I had planned to go walking in the woods with them, enjoying the smells of Fall and the forest, so very many times … and, this year, we haven’t.

I do miss these times away from the house, although I see now that what I miss are the times with people, not the times running around doing errands or shopping for this or that or finding just the perfect whatever-it-is that’s on my list today.  As I have good days, and I know I will have good days again, I want to remember to prioritize times with people.

In the meantime, I’m going to start commenting on blogs again.  Calling my friends just to talk.  And letting you know how very much you mean to me, keeping me sane and happy, even though I’m almost completely homebound.

Nothing is permanent.  Although this is how I feel today, as my meds are only poorly controlling the pain, I was able to get out two weeks ago, and it was marvelous.  I had a wonderful time at the Women and Mars Conference.  It took me days to recover from attending just two panels that day (and then chemo the next day), but it was absolutely wonderful to leave the house and share what I’ve been studying lately.  By the way, the panel discussion was livestreamed and recorded – you can view Astronaut Catherine Coleman’s remarks and the  Women and Mars Panel 1 from this link - the panel begins at about 1:19 on the clip, and I give my prepared remarks at about 1:48 into the clip.  As a bonus, Dr. Jim Green, the Planetary Science Division Director at NASA, awarded me the Planetary Science Division Public Service Award a few minutes before the end, at 2:52; at this point, I was simply jello.

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51 Responses to Homebound

  1. Donna W says:

    I think of you often throughout the day.

  2. Hope your little one gets better soon.
    Here’s wishing you less pain and sending you good energy.

    • Widget is finally recovered, except for some exhaustion mid-afternoon. Thank you. He had a tough time – 103′ for four days! But we spent the time together, and he’s well now.

  3. Linda Lawrence says:

    Thanks for keeping us updated! You are basically, always, in our thoughts and prayers. Love you!

  4. Mama Echo says:

    We love you Whymommy!

  5. I’m so grateful for the ways we get to stay connected. But yes, I miss being with you.

  6. As much as I love how the online world helps me stay connected to friends and family, I still miss seeing their faces in ways other than through an avatar or a webcam too. Lunch date after Thanksgiving, ok? Sending tons of love and well wishes for you and your sick little one!

  7. Aunt Pat says:

    Thanks for the update. We think about everyday and you’re in our thought and prayers. Hope everyone feeling better soon.
    Take Care
    Lots of Love

  8. Sending lots of love and good thoughts your way. xox

  9. Brandie says:

    I hope the boys get better soon and they can control the pain for you. I think of you often, even though I don’t reach out and say hi very often.

  10. magpie says:

    Love to you, Susan.

  11. I’m glad homebound has improved in recent years, but so sorry you’re there and missing your people. I’m deeply grateful that I got to actually meet you, if only for a weekend in May. I think of you every day, keep you and your family in my prayers, and read every word you write. Bless you sister. Thank you for keeping us in the loop about how you are. I hope and pray that your pain subsides and you can be out enjoying the people you love.

    • Thanks, Elizabeth. Wasn’t that a wild meeting? It spawned so much good work this year.

      And what are you doing here so soon after your accident? (Oh, wait, I see it was a week ago.) Take care, friend, take care.

  12. Your posts are always inspirational. Our prayers and thoughts are with you and your family this Thanksgiving.

  13. Loran says:

    Susan you are so amazing. Thank you for reminding us that it’s the time w people – family, friends, colleagues, neighbors, that’s what’s important in each day. So appreciative of you, your wisdom, your spirit, your fire to take charge of your time. Thinking of you, as always. xo

  14. Tammie says:

    Wow Susan. I can tell how passionate you are about your work. It shows in the way you speak about it. Amazing to see someone talk about something they clearly love and have invested so much in.
    Congratulations on your award. I hope you are feeling a bit better today. Peace and love to you.

  15. Stimey says:

    Susan, I love you so much. Call me anytime to chat, as you are one of the few people whose calls I actually DON’T screen. I love that you can do so much without leaving your house, but the last thing in the world I want is for you to be lonely. Not to sound too forward or anything, but I would like to come hang out next to you in your bed someday soon. Love you.

  16. Amanda says:

    And so I’ll comment here, telling you again, how deeply what you write means to me. The way that you share, whether it’s fear or anger, joy or gratitude, you make me think. Thank you for this window and for letting those of us you’ve met through this window, offer what we can.

    Love to you all.

  17. Technology really has changed our lives. And I I have been wondering lately if it is for the better; which might be shocking to anyone who knows me since I am a Technology geek. But when I hear stories like this I am reminded it is a tool like anything else, and can be so very helpful to people in need. It is all a matter of how it is used. Thank you for once again for putting things into perspective.

  18. JenC says:

    Oh Susan, I hope they can get your pain under control.

  19. Fran says:

    Susan Dear….. It is so good hearing from you, as always. It seems like a long time since you posted?

    You are in my thoughts often even though I don’t often post consistently. Since you are nearly homebound and unable to sit very long, have you thought of a Temperpedic motorized mattress with remote control? I got one during chemo, as I already had severe Fibromyalgia worsened by the cancer treatment. It changed my life for the better. Since on Arimidex for 5 years post cancer, the mattress helps with all the arthralgia side effects which exacerbates the Fibromyalgia.

    This is just a suggestion from a fellow breast cancer sufferer who still lives with long term nerve damage and severe arthralgias which has been helped by this incredible mattress. I highly recommend it and I get no compensation for advocating this brand, haaa.

    May you and your amazing family have a wonderful Thanksgiving celebration!! May you find adequate pain relief to ease your suffering. You remain in my thoughts and prayers….

  20. Tina says:

    Susan – your positive attitude is truly inspirational. Thank you. I hope that you are able to get out and about soon, but happy that you find such happiness and contentment in where ever you are.
    Sending hugs.

  21. Susan,
    Still lifting you up from South Carolina. You are in my prayers….often. I am thankful for you and what you teach me…especially this week.

  22. Jane Gassner says:

    Susan,
    How is it that I always feel better after reading one of your posts? I think it’s because of your willingness to share yourself and your joy (yes, that’s how you come across to me, as joyous) in living. Thank you so very much for, well, for being you!
    Jane

  23. Elaine says:

    I hope your pain is managed better in the near future and that you can be out and about when and where you want to be.

  24. Hi friend! Would you be up for a leisurely drive? I’d love to pick you up and we could drive around town for a bit to see the scenery, take in fresh air and catch up! Just say the word.

  25. zahra says:

    Susan,

    I hope your pain gets better. Did you ever consider Samarium 153?

    Happy thanksgiven

  26. Thanks, friends. It’s a bit of a tough time.

  27. Elana says:

    You are a wonderful teacher about life, loving and living. We met several years ago at BlogHer and. I have been lurking around here since then.I learn something important every time I read your posts.

    Thank you.

    Hope yo can enjoy Thanksgiving.

  28. [...] Toddler Planet Posted in cause, diagnosis, paget's disease, treatment, Uncategorized | Tags: cancer, cause, [...]

  29. Just wanted to let you know I’m thinking about you. Always.

  30. Toby Ratcliffe says:

    This was a great video segment, Susan! I was at a STEM event the other day and met Pamela Conrad and she mentioned your name and I told her I knew you!
    I have been thinking of you a lot and wishing that there was some way I could help.

    • Yes! I saw your name promoted on the advertising for that event and couldn’t believe it was you! Awesome!

      Thanks for the compliments – and for all you do at work and in STEM too!

  31. nancyspoint says:

    I’m so sorry to hear your pain level is so high and your energy so low. It is nice to be able to do so much from home, but I certainly understand your wishing to get out and see certain people, walk through the forest, visit the park with your little ones, go to church and all the rest. Being homebound is tough. It just is. Hopefully you’ll be able to get out again soon. Thinking of you and sending my best.

  32. ROBsLab says:

    Watching you in the panel conference is probably the closest I’m ever gonna get to meeting you. I’m glad to have watched it.

    Being able to go out and about is something many of us take for granted and I enjoy it when I can. But when needed, the internet and other technologies work wonders.

    I’m not sure what your house is like but may I suggest sitting on the porch or in your garden if you are able to, so that you have the feeling of being outdoors and the fresh breeze against your face but I guess being Winter, you’d end up being a living (ice) statue or a snow-woman for Little Bear and Widget. ;-)

    You are an incredible woman and when you put your award on the chair, I’m glad you didn’t lean back and break it! :-)

    I will end quoting Dr Jim Green.
    “Susan, you are the strongest woman I know.”

    ROBsLab :-).

  33. darmowe filmy online…

    [...]Homebound « Toddler Planet[...]…

  34. [...] of the most difficult things about being homebound with a serious illness (or two) is remembering that (most likely) things will get better.  That you [...]

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