The Road Back

I’m bedridden.

I haven’t left my bed (except for bathroom, doctor’s visits and 4 or 5 attempts to go downstairs and watch TV with the kids and friends) in months, which is something I never expected to live through.

It’s very odd to be trapped in this way.  My legs are both so numb from the toes all the way up to my hips that walking is very difficult (and I have the bruises from several falls to prove it!)  The numbness —also known as Neuropathy — is terrifying because I’m not sure if it will eventually go away, or if I’ll have it forever.  None of my nurses or doctors seems as worried about it as I am, so I take that as a good sign…

I’m also trapped by exhaustion.  Yes, sleeping for 22 hours a day STILL leaves me with a huge energy suck of exhaustion.  When I walk to the stairs and maneuver myself down them on my bottom, one step at a time, I’m ready for a 2-hour nap by the time I reach the last step.

Coming back up, I’ve graduated from crawling back up on hands and knees to walking up, one step at a time, with my cane, and I’m damned proud of that.  But by the time I get to the top step I’m ready to plotz!

Recovery takes time, I just wasn’t prepared for how MUCH time it is taking.

When my doctor used the word, “Remission,” I thought that meant that I’d be back to ‘normal’ immediately.  But I’m not, and I won’t be anywhere near my old self (because, after all, WHAT IS NORMAL?) for months.  I haven’t set goals for myself because this is such new territory for me that I have no idea of the time frame for any of it.

All I know is that I’m exhausted, in pain, and my balance is for shit.  For months I was dizzy just being upright, which is the main reason I hadn’t been blogging.  But now I’m feeling strong enough to commit to blogging about my Lymphoma recovery.

Every day I work on my stamina and balance.  I walk to the bathroom at least 10 times a day (TMI?), and I practice just STANDING next to my bed to help me feel more confident in my strength.

Thank you so much for coming along with me on this adventure so far.  I look forward to the day when I can run up and down stairs again, and RIDE MY BIKE around Lake Phalen.

A girl can dream!

33 thoughts on “The Road Back

  1. Words cannot express my admiration of the way you are walking through this with grace and dignity. (Don’t argue, you are walking through this with grace and dignity, it’s just a different definition than you’re used to. :-)). Sending you as much love, support, and energy that I can from Upstate NY.

  2. Walking, writing, talking to us via the blog and Facebook, taking oral nourishment = recovering. Our love continues to surround you and yours.

  3. Love you! You are one of the smartest, most resilient, woman I know……… how proud of you, all the women in our family (past and present) are. Stay strong!!!!

  4. I have missed you and prayed for you and will continue. Thank you for sharing this road you are traveling, we need to know how to survive and you certainly are doing it. Daily prayers for you and your family.

  5. You are making progress just in being able and willing to share. I read an article recently about thinking of goals as lighthouses, showing where to head for and avoid. You are heading towards wellness.

  6. So glad you were able to post. I was diagnosed with ovarian cancer last summer and have some neuropathy in my fingers and toes as a result of chemo, so I can sympathize. My oncologist has prescribed gabapentin to relieve the numbness, and it has helped.

  7. I did not know you were going through such long recovery. Prayers for quicker healing. So you can buzz down those steps and be total mobile. Best wishes in this new year.

  8. Good news. The best was knowing how much better you feel after telling us your progress, AND TELLING YOURSELF ABOUT YOUR PROGRESS. Your thoughts and inner dialogue should be your best friends; tell them to KEEP IT UP. If they falter, put them in time-out, give ’em a little shake, and remind them to Keep With The Program.

  9. OH – the best!! You’re back with us – however you can be!! The best word: REMISSION. This cannot be sold short, for it’s the word of beginning. Take care & comfort at all the good wishes coming your way. So glad to hear from you. Do not get impatient at this time. Remember the word beginning. Do whatever feels right & trust your feelings. You have to rely on your body’s smarts at how fast it will go. You’re doing fine!

  10. O how I wish we could all help you more just sending good wishes for a quick recovery and normalcy. You’re in my thoughts and prayers

  11. Good to see your post. I’m going through a second treatment for Ovarian cancer… those exits parades from the hospital are maddening – I agree 🙂 Here’s to good nutrition, good friends and support, good transfusions and best drugs for you and great physicians to continue their eyes on your continuing healing.

  12. I’m so happy you are in remission! Your strength is so amazing! Keep up your good work , hey standing by your bed getting your strength back is job #1! I hope you will feel stronger everyday ❤️

  13. Patience with recovery is as much a necessity as the fortitude to go through the chemo treatments. It takes time to recover from all the damage those poisons do to the body, along with the good! It is a good thing to rest all you need, and be as active as you can, pushing yourself gently but never overdoing it. Asking for help is good too…This is where a good physiotherapist can suggest realistic ways to help get your muscles progressively stronger without overtaxing your system.
    Remission is a very good word! So happy for you and your kids!

  14. Annie, so glad to hear from you – I’ve been terribly worried. I know you’re suffering and that it’s harder than hard, but I can tell you from experience that it will get better! Wish there was something I could do from California to help you feel better.

  15. Your body’s been through a doozy of a time. Don’t forget the power grief has on your body, too. It’s going to take time, months and months to get back to any level of functional, but the progress you’re making is really good, so don’t denigrate that! Walking with a cane! That’s huge!

    You’re a fighter, and you will come through this dark, awful time. You are surrounded by the love of so many, even if you feel really, horribly alone. *hug*

  16. I’m seeing you on a bike! Maybe you can start with one of those big 3-wheelers as your balance improves. Know that people are thinking of you.

  17. Never commented here before, but I want to say something as you move along on your journey to recovery. When I returned to knitting ca.2004 after about a thirty-year hiatus, your writing and your blog gave me heart and confidence. I’ve been grateful ever since. Your words and moxy and passion encouraged me and set me on a good knitting path. Thank you for that! And now I can return the favor in a tiny way by sending you my best thoughts every day and talking to the Universe on your behalf. And here are some virtual embraces for a true warrior. OOO

  18. So good hearing from YOU! I’ve missed you and your smart alecky (sp?) remarks. You’ve come so far and soon things will come along faster for you, so get ready!! Think of all of us who are lifting the load from afar, helping as we can. Lots of hugs your way…pat in Houston

  19. I was so glad to read your latest entry. I can only hope that an invisible host of good wishes for recovery from illness and support for your and your family’s grief are helping. Thank you for sharing this painful journey.

  20. Yes, recovery takes the time it takes. You’ll get there… just keep being kick ass and stubborn. Try not to get discouraged (easy to say, tough to do)… just close your eyes and think of the wind in your hair and the sun on your back and the pedals beneath you feet. You dream on, and don’t you ever stop dreaming! And we’ll dream with you… I am looking forward to seeing photos of you zipping along on that bike!

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