Category Archives: Neuropathy

A Year Out

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This month marks a year since I completed my chemo last January, and in some ways I feel I’ve just been marking time.

When I look at my own recovery this past year, it seems SO slow that at times I felt that I was moving backwards.  That’s why it’s so good to have friends who only see me every 3 or 6 months, they can give me a much better assessment of how well I’m doing.

We moved this week.  We found a house that allows me to do all of my living on one floor (LR, Kitchen, BR, Bathroom all on ground level!) with a floor for Andy (attic, charming and cozy) and a floor for Max (basement, not as cozy, but he has a space heater…)  The bonus is that the laundry and storage rooms in the basement will lend themselves nicely to dyeing.  This also means that we’ll have to build some kind of wall dividing Max’s space from the dyeing space, but we have until Max graduates in June.

And, every three months I’ve been going in for my checkup with my oncologist, every 6 months I get a pet scan to make sure the Lymphoma’s not returning.  So far, so good – until today.  The numbers were a bit wacky, so I have to go back on Thursday for some more decisive tests.  I’m expecting all to be well, it’s really the only way to focus my mind and not go a bit crazy waiting for test results.

The weirdest thing is that this has been a year without Gerry.

For the first half of the year, I’m not sure I was even fully aware that Gerry was gone.  Yes, I KNEW that he had died in October, but I was spending so much of my energy, mental and physical, on just coming back from Lymphoma and sepsis that I compartmentalized his loss and worked hard not to dwell on it.

Sometime in July it really hit me hard, though, and I started attending a Grief and Loss group at the Twin Cities Gilda’s Club.  I only wish they had one closer than Wayzata, but it’s a lovely group and I look forward to it every week.

I miss Gerry, and I do feel a bit lonesome sometimes, but I’m very fortunate to have amazing kids who have promised to be with me for a few more years, and now we have a lovely house that I can actually GET AROUND IN, and where I can live a more normal life than I could in our old house.  And, mentally, I think it was probably time for a fresh start.

So I just keep on keeping on.  Walking is still very difficult, my legs are still numb from toes to waist and I don’t feel much positive movement there.  Next week my business partner Kathleen and I will be traveling to Hawaii for a long-awaited and much deserved break (she, because she’s run the company single handed; me, because I have survived!!) Boy, that feels weird, saying I’ll be leaving for Hawaii next week.  I hope I come back with a bit of sun to see me through the rest of the Minnesota winter!

A Positive Frame

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I’m feeling like I’m moving backwards, as though my pain has increased this week and my ability to deal with my numb legs is diminishing.  My knees are SO sore (I fell on them in the shower a little over a month ago…) that they scream with every step.

Part of this feeling is due to the fact we’ve reduced my Oxycontin from 30mg to 20mg, so there’s where some of the pain is coming from.  But I just can’t shake the feeling that I’m moving backwards.

I need to keep myself in a positive frame of mind; that is vital.  But it’s SO damned hard.

I try to think of how far I’ve come, and what a different place I’m in now than I was just six weeks ago.  It’s valid and a good point.  Then I get up and try to walk to the bathroom and my legs are screaming, my knees feel weak, and I feel almost ready to give up.

Almost.

I know that I’m feeling scared about Andy leaving for 8 days at the end of Feb, but I’m THRILLED that friends will be coming to stay with me.  I worry that my pain levels will continue to increase and I will be a burden on our friends who come to baby sit me, but I just have to get over that.

On the HUGE plus side: I took a shower this morning, I ran the water, got into the shower, soaped up and rinsed off and got OUT of the shower.  While I was drying my legs were shaking so hard – I just don’t have the stamina that I used to have – but doing stuff like taking a shower on my own is how I WILL create the stamina that I need.

If only it didn’t take so damned long.

Friends + Andy

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I don’t think it’s an exaggeration to say that without my friends + Andy, I would not be here right now.

From the immediate, jaw-dropping LOVE response when I was first diagnosed through the many small gifties and visits from local friends, to the actual financial donations that have kept our heads above water these past 9 months (thank you, thank you, thank you!) and the ‘cleaning crew’ and ‘cooking crew’ love from members of my knitting group (thank you so much, ladies!) i have no idea what state we would be in right now.

There have been many days when Andy is at their wit’s end.  Andy is essentially dealing with a rather large, middle aged BABY who needs feeding and cleaning and entertaining.  At the same time, Andy has taken over the financial, legal, emotional and other necessary paperwork/office visits surrounding long-time disability and recent widowhood, which would be a huge job for an older person, forget a 22 year old just out of college!

Andy is amazing, but this job is a huge one and there are times it’s been TOO BIG.  Now that my mental state is returning to pre-cancer levels and I can actually REMEMBER when I’ve signed a form, or made a visit to a bank, the nuts and bolts of Andy’s job will be getting easier and easier.

A mind is a terrible thing to lose, I’m glad to be getting my own back.

Caring for a family member with cancer, who is struggling with the residual effects of chemo therapy, is NEVER easy.  The fact that Andy does it with such grace is astounding, and the few times that they lose their temper or feel overwhelmed are more than validated by their hard work during all of the other times.

When Max was home for the holidays he stepped up, but it’s hard to just insert someone into a routine, so of course Andy ended up doing yeoman work all through the holidays.  It did give them a bit of respite, though, and we’re looking forward to that this Summer when Max is home for the entire season.

Because I’m doing so much better, and because Andy is in NEED of a respite, they’ve arranged to go visit some college friends for a week at the end of Feb, and will be bringing one friend home to help them with some projects they’ve started.

Who knew my kid had a skill for laying out a room, organizing a basement or creating a really good flow for a home office.  They’ve also showing some skill with the power tools, which gives me a sense of pride since I’ve always loved me a DeWalt Drill.

We’re lining up folks to come and check in on me / stay with me during Andy’s absence. I think we’re pretty much covered now, and that also warms my heart.  My business partner, Kathleen, has been amazing with her visits, and her ever-ready help for Andy.

  Kathleen will be staying with me for almost a week, during which time we will watch EVERY episode of RuPaul’s Drag Race and Outlander. 

Just try and stop us…

So although I am still light years from where I want to be, I do feel myself getting better every day, and that is almost ENTIRELY due to the hard work of Andy and our friends.  (Of course, the doctors and nurses had something to do with it, I’m speaking pretty much about at-home help…)

I still can’t walk easily, my legs are numb and I almost fall all the time.  Almost.  That’s a very important word.  I don’t get downstairs as often as I’d like due to balance and exhaustion issues, but I do what I can, and I walk around upstairs quite a bit each day.  The more I walk, the better my legs feel!

I cannot WAIT for warmer weather so I can walk outside!!
I don’t like to set time-goals because that can lead to disappointment,
but I’m thinking I may be AT LEAST six months away from any kind of bike joy.
I’ll live with that.  I kind of have to…

And today a few very dear friends are coming over to help us clean the house.  This has been a pretty regular thing, thank heavens, because aside from sweeping up a broken glass that the cats knocked onto the floor, there’s not really a lot that I can do to keep the house clean.

I wouldn’t say I’m a clean-freak, but I DO care whether my house is clean, even though I’m in bed more than I’m OUT of bed each day.  Andy does their best, but keeping the house clean is really the least of what they should be worrying about, so we’re VERY grateful to Ellen and Lisa, who are coming over today, with their mops and rubber gloves.

And me? I’ll be SITTING UP IN A CHAIR in my room.  Andy’s rearranged it so that there’s a rocking chair at the foot of my bed, and I’ve been taking advantage of it by sitting up for an hour or so each day.  Just a month ago I couldn’t sit up for more than 15 minutes – huzzah!!

If this sitting up ability keeps growing, maybe I’ll be able to go to a movie with Andy??  There are several local theaters that have recliners and stadium seating,
maybe that would work? 

I need to feel that my physical strength will stand up to 30 minutes of riding in a car each way and 2 hours of movie, but it would be so nice to see How To Train Your Dragon 3 since it’s a family movie series we both love.

The Road Back

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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!