Struggling

It has been a rough day.

I am not feeling all that badly, actually. I'm eating and though I don't think it's having an effect yet, it does feel good to eat.  And some wonderful things have happened - I got to sit outside yesterday with Julia, who has been an amazing support, and with Miriam, who has brought daffodils and sent encouraging texts and just been the same wonderful friend she has been for the last four plus decades.

Today, we had breakfast with Sabastian and Jamie - something we haven't done in a couple months. They sat at the bottom of the front stairs, where we set up a table and chairs, and we sat up on the glider with TV trays. It was wonderful, and felt very familiar. And so great to see the two of them, both so happy, talking about the wedding and their plans.

But it has been a hard day because I have felt so trapped. I spent most of the day in our bedroom, reclining on the bed, watching weird shit on TV and dealing with the weirdness that is my body. My ears are clogged up again, so I'm using the Miracle Mouthwash to deal with that. Having my ears clogged always freaks me out - I can't stand the feeling of being deaf and blind. 

Lounging on the bed, I can hear people driving and walking and biking past the house, talking, laughing, doing things. I remember what it was like to walk down the street and do errands and move around without a thought. Now I'm unable to do the things others are doing, and I have to admit: I'm feeling very sorry for myself. It makes me feel like this is all useless, that I am not going to beat back the cancer and that I'll soon be in hospice care. 

Struggling is a big part of this. I struggle to not fall into depression, to believe that all this is working and that I will recover some semblance of health. I am eating, and I struggle to believe I will gain weight, that it will make a difference.

But there are times when I can't bring myself to believe it - I find myself imaging my upcoming death struggle. It is not a pretty picture.

Sometimes the fear becomes overwhelming, and I feel incapacitated by it. I find myself wanting to run away - just jump out of bed and run down the block and leave cancer and morphine and clogged ears behind. But of course, I don't have the strength to do that, nor the ability. This is my world, and I am stuck with it. At these times, I feel like a "person with cancer." No, Jim Tobias is right: I feel like a "cancer victim." Sometimes I look at my hands and see them trembling and think, "what is going on? Neuropathy?  A new symptom? And then it hits me: it's my old buddy, fear. My constant traveling companion.

Finally, around 3 PM, I just couldn't take it anymore, and so I got Tom to take me out for a drive. We drove over to the storefront, and I got to see, first hand, the work that Luis has done to finish the shop for us.

The place looks amazing. It's small - about 600 sf - but has a galley kitchen, a nice backroom that can be a bedroom or an office, a closet with an operable window, a nice big front room that could either be living space or some kind of storefront or studio, and a large ADA bathroom. 

 As Luis finishes up the space, we are starting to think about who would rent it. Of course, Ricky is our obvious choice, but he doesn't seem ready to leave New York yet. So we're going to advertise it as a live/work space, as well as just a studio/one bedroom apartment. 

 

The amazing ting about all this was how much I walked. I went down the front stairs unassisted, walked to the car, and we drove to the shop. I walked around inside and got to see everything. It made me feel better: I know I'm not the one doing the finish work, but it's getting done, and I'm happy to see that all the work and sweat we put into saving that little building is finally coming to completion. 

 

So, I'm feeling a bit better. Getting out in the beautiful day, getting some fresh air, having the wind blow in my face as we drove - it was all exhilarating.

Here are some photos for your viewing pleasure. Enjoy!