Face of Cancer - Part II

 Part II - Observations

I'm angry in hindsight at a lot of things, things like why don't doctors that are giving him his palliative care say - hey, we need you to take care of your bones, you should eat this or do these exercises, avoid that, etc.? Nada until we were talking to our radiation oncologist back in January/early February - Brandon mentioned riding motorcycles and he (rad. oncologist) said he should probably avoid that; one wrong step putting your leg down at a stop, boom, fracture. (us - uhhhh, didn't think about that). Had to ask at his latest chemo appointment about this very thing and they're supposed to be working on getting him an injection that will/should help with protecting his bones. 

No suggestions on how to help with his edema he's had since he had his last surgery (End of March, he had a catheter surgically placed into his right pleural space of his right lung to allow him/us to drain the fluid that accumulates there daily).  (For those of you curious: Aspira Catheter FAQ)

It's just bizarre, not the cath, just the no suggestions/helpful tips/re-routes bit. 

Mentions of the shortness of breath and his cough and all that (stuff that wound up hospitalizing him three? times now) were acknowledged, but no action was taken. "Hopefully the cough will get better." 

I realize the oncology team has a LOT of other patients in similar scenarios; some probably more severe, lots not as severe but just as important. Frankly though, I'm surprised there are not suggestions of talking to specialists to get to the bottom of the "why" and let's help with symptom A or B or C or all of the above.

We very recently had a follow-up appointment with his pulmonologist who pulled 2.5 liters of fluid off his lung a few weeks back. When he mentioned he wanted him to have a chest x-ray to see how things are looking, I brought up the fact that he's so tired at times that he's almost narcoleptic and asked for a CBC, too. Last few days prior to the appointment he'd slept pretty much all day. Literally ALL day long. 

Doc looked at his eyelids and under his tongue and said from observation that yes, he does look anemic. He talked to us a little bit about probably having a transfusion,  but we never got any further than that. No follow-up call saying hey, here's your lab results, this is low or things are on target. I even made a few follow-up phone calls asking for them to please call US back. Crickets. 

Went to chemo week before last and after having his labs done, one of the nurses said he's not healthy enough for chemo and asked how he was feeling; 'are you short of breath, tired all the time?' Yes, Yes. 

I asked about him getting a transfusion to which she asked if he wanted one. YES

Transfusion time. He got two liters of blood the next day and felt a little crappy after, but seemed to improve/perk up a little bit. 

We moved forward, but we also took two steps back.   

To be continued. 

The Face of Cancer - Part 1

Blog begun many times...just post it already! (notes to self)

The "face" of cancer and caring for someone who has it.

Disclaimer: This is only from my standpoint; wife, lover, best friend, partner, and now caregiver to my husband of 23 years. This is me ""prattling" away with loads of thoughts in my head. There is language maybe not appropriate, but well...this is pretty serious and I'm being honest. 

What is this existence like? Maybe you've asked yourself or another friend or acquaintance. Or, maybe you've wondered, and wanted to ask but didn't know what to say. (Please) Just ask. :)

There is nothing private anymore really and that's okay. I've not thrown it out "there" really in such detail until now on what IT is like. No over-dramatization. Just reality. Brandon mentioned I should write it out. Look back, haul out a calendar and do it. 

So, here we go. Therapy time for Mel or some such. Not a plea FOR anything, just acknowledgement of life as we now know it.

cancer - not giving it a capital letter, it's too shitty of a word/connotation. 

IT is dreadful, for both of us, because we are a team. I can't feel the feelings he has or feel the pain he feels or any of that, but I do witness what he is going through daily. It's affected me a LOT as well. I'm taking meds now to help with my anxiety. I saw a phrase the other day, anticipatory grief. I think that's what some of my feelings are.

Since this all started and reared its ugly head last year, we've had some very frank conversations. Stuff you really would think you'd only see or hear about in a book or on a show or a movie. But no, this is real as real can get. 

My husband in a very short timespan has gone from a robust, very active and healthy man to a man who looks very different than he did a year ago. He's lost 50 something pounds, if not more and NOT from exercise or healthy eating. His hair is very sparse now, where previously that wasn't the case. His shoulders are so thin that he looks "frail"; he said he wants to take photos, not to be morbid but to just display the reality of things. Why? 

Why commemorate something like this? Well, Why not? It's harsh, yes, but it's real. It is daily, now. 

 He is a changed man, externally, the Brandon you and I can see physically and internally, too.

We've had conversations on: What happens when, what happens now, what do I do, how do you feel, what can I do, what do you want to happen, what about the house, what about this, what about that. How will I live without you. I felt absolutely gutted when he said he's resigned to this the other day. I felt gutted a few days back too (April 6) when he said he's trying to help make things easier for "when he's gone". 

That statement is just so final. 

There have been tears, there have been insane laughs because it was just the right damn thing to do right then and there. Mostly it's been a very helpless feeling and lots of dread for both of us. This is happening right before our eyes and there's not a fucking thing either of us can do except keep on trudging along. 

How long can one do that?