Went to Kearney to the oncologist yesterday. Doc thought maybe Dad’s calcium is staying high because of parathyroid involvement…perhaps a node there or something. If he could get that out, then he could quit the monthly Zymeda (which is now making Dad feel achy and crappy) so he wants Dad to see an endocrinologist. They are trying to set that up now. Of course there is no such animal as an endocrinologist nearby or anything. Omaha or LIncoln.

Today Dad had a Dr appointment in Kearney. The oncologist decided he needed to have his heart checked out. See if the fluid problem lies within that area. He doesn’t think cancer is the culprit. So…now we pursue that. Good report really. The chest x-ray showed fluid in the left lung, as always but no tumor growth. We are happy but remain watchful.

Dad’s scan showed, hold your breath, fluid in his lungs…again.
duh
I’m afraid this is how things will be. Take the fluid out, back the fluid comes.
I would have to say that Dad doesn’t have as many symptoms of the reaccumulation of fluid…as he did last time.
We went to the oncologist today.
Basically she said she thought the fluid was reaccumulating because of “cancer”. I really think that Dad thought his cancer was, well, gone. Because of all the radiation, the chemo, the procedures he’s undergone and the side effects of these things he had forgotton one thing. He has cancer. Cancer AND side effects of those other things.
The oncologist gave us three options. One…a different type of chemo, Two…consult with a thoracic surgeon who could put Dad in the hospital for several days, insert bilateral chest tubes, drain both lungs, “scar” up the pleural spaces and MAYBE this would work to keep the fluid from reaccumulating, Three…go on as we have been, still getting monthly Zymeda, draining the lungs as needed.
I don’t know, for some reason I had convinced myself that the fluid was related to, perhaps, the radiation or chemo. As we were about to leave I thought to ask the Dr. this question. She said, No…the fluid is not caused by these things. She seemed sure. I still question it. I don’t think she likes me. I don’t think the nurses like us either. I hate that place. I see them visiting with other patients, caring, asking questions, touching, making eye contact…and then…they seem very very different to us. I wonder why.
Anyway, we have to talk about our options and figure out what to do now.

Dad is to have a CT scan tomorrow. We haven’t seen the Dr. in a month. Dad is pretty short of breath. His activity is very limited. His appetite is poor but he eats anyway. Time is flying and we don’t know what is in store for us. Everything revolves around the cancer.
We maybe should have went to North Platte for treatment.
I don’t know.
I don’t know.
I don’t know.

We are heading up to Kearney soon. I talked with the on call (new guy of course…so new he is squeaking…but he did see Dad last Thursday os he sort of “knows” of him) Oncologist who is supposed to be setting up a thorecentesis this morning. All hinging upon the INR results to be < 1.5 (if not then it’s fresh frozen plasma first) and really if we can make it to all the different buildings we have to go to in order to get the treatment done. I wonder if we can.
Every movement is difficult now. Air is a precious commodity.
I listened to Dads lung sounds and the left lung is completely filled up with fluid except for a small area of air movement. The right has a few rhonci.
We are supposed to get on the road and try to be up in Kearney by 8:30 - 9 this morning. I am to call the Oncologist while on the road (cuz it takes us 1 1/2 hours to get there) and they are supposed to be telling us where to go and what to do and yadda yadda yadda yadda yadda.
I know it’s going to be a cluster.
We cannot have a bunch of wasted trips here and there. Dad won’t be able to tolerate it.
I hope to hell they get it set up and set up so that this will be as easy as it can be.
I doubt it.

Dad needs a left thorecentesis again…like yesterday really.
Why the hell we didn’t already schedule it when we were at the oncologist is beyond me. It’s like we are struck dumb at the office.
Of course we had the new guy…had to start over from scratch…had to do a cliff note on dads condition. Instead of getting set up for the procedure we ended up just adding Aldactone to the 80mg of Lasix per day.
Every day is a struggle now. The O2 is a necessity. Dad won’t wear the portable though his sats dip below 85 percent. He is using a cane at times to walk to the bathroom…”for balance”. His activity is extremely limited which in essense limits moms activity too.
There is no answer, no fix no way to make this easier.
We are waiting for Monday to call the oncologist and set up something.
DAMN IT TO HELL I WISH WE WOULD HAVE DONE THAT ALREADY!!!!!

We are going to Kearney tomorrow. We missed Dads Zymeta infusion on Tuesday. We just plain thought it was scheduled for thursday. Dad needs to see the Dr. too. He hasn’t had much improvement in his breathing since the last thorecentesis. His activity is very limited. He doesn’t like to wear the oxygen except when he is sitting on the couch. He doesn’t want to wear the portable at all.
We will take it tomorrow anyway.’
I don’t know if the chemo damaged dad’s heart…put him into heart failure, if the excess fluid around his lower extremities will remain, if he has fluid building up in his lungs again, if the cancer has spread, if if if if if . I listen to his lungs and I hear diminished sounds, rhonci, but I can’t really tell if there is fluid in the pleural area. I just have the worst time assessing his lungs. I always have…even before he had cancer. I don’t know what to do really.
I caught him smoking on the back step the other day. He says he has been. 1 or 2 maybe. I didn’t know what to say really. I felt pissed and sad and yet I understood.
Nothing is enjoyable for him or for mom. He sits on the couch and “rests” all day. Watches a bit of TV, eats sparingly. He drives to town once in awile but he doesn’t want anyone to see him gasping for breath so that has generally limited his errend running. He can’t mow. He can barely get to the step without grabbing furniture because he’s so short of breath.
Everything seems overwhelming and uncertain.

Since Dad has his right lung drained things are looking up…as up as they can look. The fluid is caused by the chemo and we hope that no cancer cells will be found in this 1 1/2 litre of fluid. He is only using O2 when he rests at night…for the “healing” effect it has. He gets a bit short of breath when the humidity is high but other than that…he feels better. His BP remains a bit low and the PT/INR is an ongoing lab to check and change the coumadin.
Dad’s hair is now coming back in. His fingernails and toenails are brownish and now growing out.
One wonders…now that the hair and the fingernails are growing will the cancer start in again??
Time will tell. For now we enjoy the fact that Dad can breath without assistance

Mom called the oncology office on Tuesday and said that Dad wasn’t feeling better and she wondered if the other lung could be scheduled to be drained as soon as possible. She got a call on Tuesday, from one of the nurses (surprise…no Dr call), who explained that Dad needed a PT/INR drawn, that he had an appointment to get the lung drained at 1pm on Thursday at the hospital.
okay.
Then, she got a call later Wednesday afternoon explaining that due to Dad’s PT/INR being too high and that it was too late to “thicken” the blood with Vitamin K, Dad was to be at the radiology center for an infusion of platelets at 9 am and then he was to see the oncologist at her office at 11:15 and that he was still tentatively scheduled for the thorecentesis at 1pm.
okay
So, we got to the radiology department at 9am and found that not only was Dad supposed to have 3 units of platelets but that the nurses there are AWESOME and CARE about patients and their families. I cannot tell you how exceptionally nice it was to finally meet someone with compassion and empathy. It made me want to cry. Dad was actually assessed and monitored and cared for…by the people who worked for the facility. The staff made all the necessary phone calls and arrangements for us and it felt great! They even offered to make mom and I lunch (we declined) but my God how wonderful. Dad almost slept through the entire infusion. His O2 sats were 79 to 83 on room air and he was set up on oxygen and did he sleep! He tolerated the fluids well and as soon as they were done we headed up to “see the Dr”.
yah right
You guessed it. We did not see the Dr. In fact, we did see the NP and she gave Dad a “thorough exam” NOT and was about to send us out the door as fast as she could so we “wouldn’t be late for the prodedure”…in fact I had to say…Hey…is Dad’s PT/INR okay? Will they actually do the procedure when we get there? When in fact, the only reason we were at the Dr office in the first place was the fact that we were told that since Dad’s blood was too thin he had to have platelets and then have the PT/INR rechecked and then and only then after seeing the Dr could we for sure go and have the damn procedure anyway. But did she EVEN REVIEW THE LAB REPORTS BEFORE SEEING US?? HELL NO!! HELL NO!! AND HELL NO!!
I am sick of that place and their total lack of concern.
So is Mom.
Well, we got to go and have the right lung drained finally. Another 1 1/2 liters of fluid drawn off. Dad tolerated it well.
Mom and I are in agreement…We want to switch to the Cancer Center for all of Dad’s treatments.
A little bit of kindness goes a hell of a long way.