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.