Visiting? Well...Maybe

My dear old imaginary (so it's really not you) friend: 

I heard you wanted to come visit.  I love you. I'm so honored by your love for me.

Let's talk.

It's like Monopoly. You visit, I'm stuck.

Here's an awful truth: I might not want you to come. I know that's a hard truth to swallow. And it isn't universally true. But consider this:

When we last got together, I felt a little impaired, and you could see it, for sure. I might have been a little tired, but generally, I was slogging through. I ate most of a meal. I had some energy to do things with the occasional nap. I would go out to dinner, maybe have a glass of wine or a cocktail. I could manage most of my life. I could travel maybe a little, walk a bit, slowly. I could drive and do things.

Things have changed. A lot.
For the last several weeks, I no longer felt well at all.  I had a hugely bad reaction to my last round of treatments. Maybe the cancer is taking over. I don't know why, but I'm much sicker.

Some days, I never left bed except to head down to the couch. I am often in pain from head to toe, spiking fevers randomly. My new big social event each day might be a doctor visit.

You don't know this, and I'm fine with you mostly not knowing, but I can't promise I'll be in shape to receive you when you come.

I have nearly zero energy. 
Walking up the stairs makes me exhausted. I'm not going anywhere, except the occasional RV trip. I avoid crowds, I can't drink anymore, and I'm not eating. I miss dancing so very much. Crowds tend to make me ill. Bars are out. Hubby does the grocery shopping. It's a remarkable day when I can do it. I'm not driving much! In the RV and the car, hubby is driving most of the time, and I'll be honest: our last RV trip was kind of awful for me. This saddens me beyond what I can tell you. Some days, I take four naps just to drag myself through the day.

I like my house clean for guests.
That's why I never sent that invite for a barbecue. Not only am I not eating, but my energy to clean the floors, the bathrooms, put things away - it's missing entirely some days. 

You need to understand: having you come visit will compel me to try. You can tell me "it doesn't matter" all you want: it matters to me. It humiliates me. It is another reminder that this is something I can no longer do: be a good hostess. Your visit is a reminder of my loss. Having someone care and clean for me: even worse. 

I have lots of embarrassing moments.
Last night, I felt well enough to go out to a restaurant. Silly me! I had to run to the bathroom where I fell into the worst coughing fit, apparently a side effect of my new meds. My new chemo has lots of other embarrassing side effects and fatigue that will make me wary of visits.

There are a few things I'll make an extra effort for: life events, our daughter...big things. But I'll be bringing the RV, so that I can manage my awful symptoms in private. Get it?

This is my new so-called life.

I am grateful for your love.

Look, I know you love me. There are several sadists that were in my life. They have left me altogether, unable to face my diagnosis, perhaps, and definitely unable to overcome their own feeling of failure, for which they strangely blame me yet for sins I never committed, as far as I can tell.  It's bizarre, but I can let that and them go, because they show me who they are and are not. Please know I am grateful for you. I appreciate all of your good intentions and it is comforting to know you're always going to be there emotionally, if not physically. There are much bumpier seas ahead; please be prepared.

I would be remiss if I didn't say that some of you have been perfect masters at all this. Better than I would have been. Thank you!

Here are some tips that might help, inspired from Cancer.net:

1. Prepare yourself. You might be upset by what you see - and you'd be even more upset if I showed you my reality. Try to be with me, not your feelings, anger, resentment or restless energy.
2. Ask before visiting. Most of the time, I might say no, at least until and when I feel better.
3. Be flexible. Listen, I can't say if I'm suddenly going to have a bad day. Be ready to cancel.
4. Read my blog. Take a minute to find out how I'm doing. It will help you avoid saying things like "take up a hobby." 
5. Don't try to fix it. Do you know what HER/neu is? What oncotyping means? Did you even bone up on stage IV breast cancer? Then, why do you think you can fix this? The day is coming when there is no fix.
6. Don't undermine my decisions. Asking if I'm doing the right thing (or words to that effect) is the same mistake we moms make, asking our girls if that's what they are going to wear. Actually, I do not care if you do question me, but expect me to say less and less to you about the whole thing.
7. Be present. I won't want to see anyone for long anyway, so for a few hours, put away everything else, and I will too. That even means that restless energy you feel -- I found out what you did last time, and yes, it hurt my feelings. 
8. Deal with this honestly. I know you're not happy. How do you think I feel? Did you think I want to pretend everything is just fine? Tell me you're upset if you are…and be self-aware enough to know. 
9. Don't come if you're the least bit sick.  Or, I do have masks and gloves. I just shouldn't be the one to wear them.
10. Use Skype or Hangouts instead. They are pretty amazing, and works great for the daughter and us. I can visit for hours on Skype. Way less pressure. Just be advised that I might be in PJs.

Thank you, dear friend. Know my love for you is not less because of this. I just wanted you to know. 

Healthcare Update

I am on day 4 of my new medication: Xeloda. It is taken by pill, three pills twice daily.  It comes in a biohazard bag that makes me think my pee should glow in the dark, but so far...well, mixed.

Last night, I developed a random bronchiospasm (coughing fit) that made me run from the restaurant proper as fast as possible. (Coughing causes other embarrassments, like I'm a senior in a nursing home.)

I am as fatigued as ever, or possibly a bit worse. I nonetheless have serious sleep cycle impairment. I don't have restless legs, I have legs that are marching to Pretoria.

But early returns for the cancer visually look positive, so I may just have to suck it up somehow.  Another HUGE plus: I don't seem to be as painful and feverish. For the first time in months, I haven't taken Tylenol today. But I still may have meds on board from the bronchiospasm, so it's unclear.

Oh, and I finally have an appointment for a second opinion at MD Anderson. I called them because I feared what the reaction to Kadcyla was doing; they are studying something similar. And I'm in. Finally. Houston, I have a problem....