Sunday February 5th
(jump earlier)
Hubby is doing okay...sleeping a lot, but then so am I. I think I might be suffering from a bit of exhaustion. I can't seem to keep my eyes open for long when I am sitting down.
I've hurt my back somehow and am hobbling around trying to take care of things. There is only so much I can do and thankfully I have Son around to help out. He is really helping a lot.
I'm going to stop agonizing over feeding hubby. He seems to be faring pretty well on power shakes, pudding, and ramen noodles. I tried out a ham and cheese quesadilla and he was able to eat a few bites. No way will he eat the dinner I have prepared for me and Son....Chicken Cacciatore w/cippolini onions and golden bell peppers served over linguine.
Pretty soon I am going to have to face whatever is happening with the arrangements for my brother's cremation and service. Maybe tomorrow. |
posted Sunday February 5th, @06:55PM
Friday February 3rd
(jump earlier later)
Ring the Bell -- treatment is over! Today was the last day of radiation. They have a brass bell on the wall for patients to ring when they complete treatment. All the docs, techs, nurses, and whatnot come to applaud and give encouragement and good wishes. Then we had to go upstairs and do a few bags of fluids/magnesium to give him a little boost. It is a good thing this is over because he is looking pretty rough. Let the healing begin!
We are looking forward to a few days of rest, sloth, sleep, mindless TV, and maybe some more rest. I think I will avoid looking at his upcoming schedule until Monday. They won't do any scans for 8 weeks, but we are expecting a few things to show up.
Almost dinner time...must get busy! |
posted Friday February 3rd, @06:44PM
Tuesday January 31st
(jump earlier later)
Only 3 more radiation treatments!!! We are still trying to figure out if he has to have one more chemo session on Friday. The doc wanted to consult with the original doc at the main campus before they decide one way or another. I just sent her an email asking about it so we should hear from her soon.
Last night I tried making Sunny Anderson's Spicy Macaroni and Cheese, but I left out all the spices. It was just okay, but he ate some along with some Polish sausage and broccoli. Today it was pretty dried up looking so I added some cream and heated it up slowly in a saucepan. He is tolerating that okay, too.
I am having a crappy couple of weeks. Last week the property manager of my rental house in AR informed me the tenants are seeing rats in the house. I approved $375 for rat removal and blocking the holes where they are coming in. Who knows how much it will cost me for them to repair the interior damage?
2.5 weeks ago they called to tell me that the house was broken in to while the tenants were on vacation and there was damage to one door and two windows as well as a bunch of stuff stolen. I'm responsible for repairing the damage, but not replacing the stolen goods.
Then last night I get another email saying the tenants are moving out immediately because the don't feel safe. They will look for new tenants, but it could be a while.
To top it off, today, just as we were getting out of the car to go in for the radiation treatment, my phone rings. It is my sister telling me our brother (in hospice) is actively dying and they don't expect him to make it through the day. As soon as we got home my phone rang again and it was my sister saying he just passed away around noon. |
posted Tuesday January 31st, @04:00PM
Sunday January 29th
(jump earlier later)
Pain management is much improved with these new Duragesic (Fentanyl) patches he is on. The patches seem to smooth things out and even if he is late taking the liquid, it is not too bad!
Today he had a shake w/instant breakfast, protein powder, half & half, whole milk, and ice cream. A pudding snack later, and then a crustless egg salad sandwich on whole wheat. Dinner will be a can of Campbell's Homestyle Chicken Noodle Soup made with 1/2 water and 1/2 broth. I am going to make some dumplings to cook in the soup. I can't figure out why he can eat dumplings, which are kind of dense, but whatever. I will encourage some ice cream for dessert.
ONLY ONE MORE WEEK OF TREATMENT!!!!!!!! I might have mentioned that before.  |
posted Sunday January 29th, @06:38PM
Saturday January 28th
(jump earlier later)
Well, I made chicken and dumplings from the leftover chicken and stock and he couldn't eat it. He said it really burned his mouth. It is really hard to figure out what he can eat comfortably and why. It had onions in it, but so did the original chicken dish. For two nights he ate a dumpling in a bowl of Campbell's Chicken Soup and that was fine.
Last night I made baked fish drizzled with EVOO. Mine was seasoned with lemon pepper, a dash of salt, and some dried oregano. His was seasoned with a dash of salt and the oregano. He ate the fish fine. The side dishes were mashed potatoes and spinach. I made the mashed potatoes with butter, half and half, salt, and a drizzle of chicken broth to make it less dense. He could not eat the potatoes. The spinach was just frozen spinach with butter and salt and he couldn't eat that either. He can eat fresh steamed broccoli with butter and salt just fine  I once tried fresh spinach with the same seasonings and he couldn't eat that either.
He wants to go to unsalted butter, which is fine. But everything I cook is seasoned with salt and it is just hit and miss what he can eat and what he can't. There is just no rhyme or reason here. He is mostly living on shakes made with half and half, whole milk, protein powder (sometimes) and vanilla ice cream. He has a vanilla pudding once in a while as well. Oh, and today he ate some egg salad made with just eggs and mayo...no added salt or anything. Scrambled eggs seem to go down okay.
One more week of radiation and then maybe a month or two of recovery and healing. It is getting hard to understand him when he talks to me. Don't know what will happen after that... |
posted Saturday January 28th, @06:16PM
Sunday January 22nd
(jump earlier later)
| Dinner was a success! He was able to eat a good sized portion. |
posted Sunday January 22nd, @10:08PM
(jump earlier later)
No fever yet -- looks like we might get through the weekend without incident.
I am cooking Emeril's Slow-Cooked Whole Chicken, Garlic Butter Rice, and roasted asparagus. I have made this chicken before and it is falling-off-the-bone tender, so he should be able to eat it. The rice is nice and soft and buttery with a hint of garlic. He might not be able to eat the asparagus, but maybe I will switch to steamed instead. I'll use the leftover chicken for Chicken & Dumplings later in the week. He actually requested the Chicken & Dumplings!
MIL just called and Hubby always talks to her using the speakerphone. At one point she says "I was only there for 15-20 min. and didn't even have a chance to strike up a conversation with anyone." That made me LOL as it is the polar opposite of what I would think. If it were me I would say "I was only there 15-20 min. and thankfully, didn't have to talk to anyone."  |
posted Sunday January 22nd, @05:07PM
Saturday January 21st
(jump earlier later)
Crap, what a week! I don't even remember all the stuff that went on, but there sure wasn't anything good.
On Wednesday the labs didn't look good. His magnesium was way too low as well as his white blood count and blood pressure. That means IV fluids, yay! Approx. 3 hours in the infusion room for a nice big bag of stuff. The doctor scheduled labs again for Friday morning and chemo for that day would depend upon the results.
On Friday his counts had come up some, but his blood pressure was the lowest I can recall and he was running a slight fever. Doc decided on no chemo this week, but he did have another big bag on fluid.
He is losing too much weight. There is not much he can eat other than shakes made with whole milk, instant breakfast, and ice cream...he can also eat oatmeal, pudding, and I am making some kind of soup or stew 2-3 days a week. I guess he did alright with the spaghetti earlier this week, too.
This weekend we are on fever watch and have to monitor his temperature closely. If it goes up to 100.1 it's off to the ER. He has had chemo fever before, so we are keeping our fingers crossed. It was okay until about an hour ago...99.1. |
posted Saturday January 21st, @04:27PM
Monday January 16th
(jump earlier later)
Okay, scratch that.
I insisted he take a fish oil capsule daily. He took one and immediately starts gagging, runs to the bathroom, and then starts spewing blood from his mouth and nose. I guess we can skip the fish oil capsules. Phew, that was scary...it even brought Son down out of his room. |
posted Monday January 16th, @08:39PM
Saturday January 14th
(jump earlier later)
Friday's chemo was not what we expected. The port catheter was implanted to make things easier. Last week the surgeon and left the needle in to facilitate chemo the following day. This week there was no needle and little did we know how difficult it was going to be.
After radiation we went upstairs to the clinic to have the port accessed for labs downstairs. They couldn't get a freaking blood return! ACK! It took 30 min., 3 nurses, several doses of heparin, a few saline flushes, and some acrobatics to get it going. "Lean forward, raise your arms over your head, cough, breathe deeply, bend over, stand up and raise your arms...WTF? They finally changed the needle size to get a blood return. We were joking that he might have to stand on his head to get things going. Thank God it finally worked. I hope we don't have to go through this every week.
The ulcerations/blisters are getting worse. When we left the infusion room last night he had blood oozing from the corner of his mouth because one of the blisters had opened up. Nevertheless, he was able to eat the fish, spinach, and potatoes I cooked when we got home.
Eating is really getting to be a problem because most any kind of seasoning bothers him now. Tonight I am making Sloppy Joes with homemade fries. I hope he can eat it. I am leaving out most of the seasonings. It's hard to cook without seasoning the food and not very appetizing either.
Nerves are getting frayed. I am hearing lots of big sighs when I ask him to do something that the doctor said he has to do. I am doing my best, but it not easy. |
posted Saturday January 14th, @06:10PM
Wednesday January 11th
(jump earlier later)
It seems that the episode Sunday morning was a vasovagal incident causing him to pass out...not a big deal in the grand scheme of things.
It is now Wednesday and his radiation treatment is half over. This sounds great, but when you factor in the side effects so far, looking forward looks pretty scary. He is getting some severe mouth/lip ulcerations which are causing problems. Eating is difficult and also brushing his teeth. He is supposed to rinse his mouth with a baking soda solution several times a day. Low blood pressure is giving him dizzy spells and causing general fatigue.
When the doctor saw how much weight he had lost since Friday the dietician was called in. There are plenty of things he can still eat but he does not seem interested most of the time. I wish I had that problem. The pain meds are causing constipation and that can get pretty serious.
So, what else can suck these days? My rental property manager informs me that the house was broken into while the tenants were on vacation. Two doors and a window were smashed in. I just know that my deductible will be just over what it costs to repair the damage.
My lumbar disc problem is acting up. After my surgery in 2009 I was told I should not be surprised if further problems arised. Surprise! I can barely walk some days. We are quite a pair. |
posted Wednesday January 11th, @11:11PM
Sunday January 8th
(jump earlier later)
The implant on Thursday went pretty well. I did not know that conscious sedation meant that he would be awake during the entire procedure.  They talked to him and he answered during the whole time. They did have a drape in place so that he did not have to see his chest being cut open and them digging in it.  Reminds me of my C-Section only that was a tad lower down.
Friday was somewhat of a, um, Fustercluck, yeah, that's it.
10AM: Blood/Specimen Collection
10:15 Nursing Clinic Visit (this is new--?)
10:45 IMRT (radiation)
11:15 Blood/Specimen Collection (huh?)
11:30 Chemo
So, we go for the blood draw and then go upstairs for the Nursing Clinic Visit and check in at the desk. We wait for 30-40 min. and then then call us and say that he has to go back down for a blood draw because his blood is "clumping". We are to come back upstairs after the 2nd blood draw...okay.
We are back upstairs and they eventually call us in to take vitals. Then they show us to a room, which is an infusion room, not a clinic room. In walks the nurse with the IV kit and we are like "Whoa, hold on here, we were supposed to have radiation after a "Nursing Clinic Visit" which we have never heard of before.
It took forever for things to get straightened out. Eventually, they called radiation and told them we would be down after the pre-meds were infused. Then there was the problem of the nurse figuring out the Power Port. She knew what it was, but as it was so newly implanted, she wasn't sure how to proceed after accessing the port...should the dressing be replaced or should it be left uncovered?
The surgeon left the needle in knowing that he would be having chemo the very next day. Once the nurse saw that she was good to go.
While the premeds were being infused the head nurse came in and informed us that the clinic rooms were full up and the oncologist's nurse would come and visit us in the infusion room. Okay, so this must be the Nursing Clinic Visit...okay. We went back down for radiation and finally things started to calm down.
Back upstairs for the rest of the chemo and wow, it was fast with that port in! We got home before 4PM! Spaghetti for dinner and hubby was able to eat it fine.
Saturday seemed pretty normal. I made bean soup with the ham bone and ham chunks leftover from Christmas. Hubby was able to eat the soup and herb rolls. I went to bed early, but later on all hell broke loose. Hubby had a fall and it scared the crap out of me.
So far, Sunday is quiet. Son is folding the laundry and he also cooked dinner. Early bedtime is the plan. |
posted Sunday January 8th, @07:58PM
Wednesday January 4th
(jump earlier later)
Tomorrow we go to a local hospital to have his port catheter implanted. It is actually called a portacatheter, but that sounds too much like port-a-potty so I refuse to call it that! The procedure will be done under conscious sedation so it isn't too big a deal. He still has to have his radiation treatment before the procedure, but chemo will be postponed until Friday.
We saw the general oncologist today. Hubby told her that he was experiencing marked hearing loss, which is a side effect of one of the chemo drugs. He noticed that he could no longer hear the shower running when I take mine in the morning. He already has lost quite a bit of his hearing due to this same drug during previous chemotherapy. She is changing that drug to a "sister drug" that does not normally cause hearing loss. We will see.
It is tricky treating a patient that has been through so much treatment previously. Radiation has a cumulative effect and they are monitoring his reactions very closely as there can be some serious issues in re-radiating the same area. Chemo can also be a problem. He never regained the hearing he lost the last time. His veins are shot to hell and his labs have to be closely watched for kidney function and things like magnesium and even sodium.
I am cooking Short Ribs and root vegetables braised in red wine and beef stock. Hubby gained 4 lbs., which is a good thing. Unfortunately his mouth is starting to get sore and tender so soft foods might not be far off. We are hoping to avoid a feeding tube this time.
I didn't sleep much last night and hubby was having some pain that kept him awake a bit. He got some good pain meds today so that should help. It will be an early night for both of us. |
posted Wednesday January 4th, @06:14PM
Monday January 2nd
(jump earlier later)
The 2nd radiation machine was up so we were in and out of there in around 35 min. Hubby has been reading or napping most of the day (more napping than reading). He is starting to complain about some pain in his face. We will certainly bring this up when we see the docs this week.
Never did cook yesterday's planned food...too tired. I'm making some chicken tonight and went ahead and wrapped the bacon around the shrimp and will just throw that in the oven along with the chicken.
I am looking forward to bedtime, but I have dinner, cleanup, and 2 loads of laundry to finish up...yawn... |
posted Monday January 2nd, @06:59PM
Saturday December 31st
(jump earlier later)
The stupid dentist made that 8:30 AM appointment to give hubby his stent, which he has had since he started treatment on 12/19! It's a good thing we chose to ignore that appointment or we would have been royally pissed. The gastro guy wants to do a needle biopsy on the spot near his liver using an endoscope through the mouth. It is not a good idea to do this procedure during radiation and chemo so it will wait until treatment is over.
The 2nd radiation machine has been down all week and the wait times have been long. Friday it wasn't too bad, but Thursday we had to wait over an hour which pushed back the time we could get to the chemo appointment. Chemo was scheduled for 1PM, we got there at 2:30 or so and didn't even get going for another hour.
Hubby has bad veins and they always have problems getting an IV started. At the main campus they have a special IV Team that will come and help out with difficult cases. We have had to take advantage of their help many times. At the satellite location there is no IV Team. When his nurse first came in I told her that he was a difficult stick...she laughed and said it would be no problem...20 min. later she called for help. After the 2nd nurse arrived they both worked on him for another 20 min. or so and then called in a 3rd nurse. Eventually he had all three nurses holding one arm or the other, slapping, poking, patting, and doing whatever they could think of to get a vein to present.
It took six sticks and over an hour to get the IV in. I told her, but she didn't believe me! Now there is a plan to have a port catheter surgically inserted under his collar bone next week. Even though there are only four more chemo treatments, the port can be used to take blood for lab work and whatever. It can stay in for quite a while.
Today is New Year's Eve and we are just hanging around doing nothing, which is a good thing. I'm going to make shrimp & grits with some crusty bread and a salad. We have some champagne to drink and I'm sure we will be awake late with all the fireworks that go off around here. Maybe we will step out on the front porch and watch.
Tomorrow I plan on making all kinds of finger foods wrapped with bacon. Jumbo shrimp, sweet bacon chicken wraps, little smokies, and some non-bacon wrapped chicken wings. We also decided to try out some home made fettuccine in our pasta maker. It should be fun.
Happy New Year! |
posted Saturday December 31st, @06:13PM
Monday December 26th
(jump earlier later)
Christmas was nice and peaceful with just the three of us. Somehow, our cooking efforts were slightly off all day. Hubby made French toast that wouldn't brown and then got too dried out from putting them in the oven to keep warm. While frosting the Red Velvet Cake the cake plate (which is on a pedestal) started to topple and the cake went sliding into the raised breakfast bar area over the sink. I managed to catch it and avoid serious damage, but it ended up looking pretty lopsided and now has a big crack down the middle. Oh well...dinner tasted good and we had a nice bottle of champagne.
Sometime over the past 3 days 2 new appointments at the main campus showed up on the schedule. Tomorrow they want us to be there at 8:30 AM to see one of the dental oncologists, drive back home (40-60 min. drive) for radiation, and then drive back to main to be at a 2:30 appt. for a gastrointestinal consult. No way! We will just pop in to the dental clinic after the gastro appt. and see what they want.
Only four days this week, but we don't get a three day weekend for New Years Day. Bummer. |
posted Monday December 26th, @03:41PM
Friday December 23rd
(jump earlier later)
Treatment is over until Tuesday! Hubby is starting to get very tired and falls asleep almost as soon as he sits down. His face is starting to show some redness and irritation from the radiation. No issues related to the chemo yet, though. I know what to look for and have not seen any evidence of problems.
I'm cooking up some chicken stew with tons of veggies and some dumplings to top it. I'm trying to cook very nutritious, but homestyle meals that hubby will want to eat. The stew has carrots, onions, celery, parsnips, rutabaga, fresh bay leaves and thyme, and I'll add some baby red potatoes at the end.
Last night our new kitty got out and spent the night outside. She is a feral we caught with a trap, spayed, vaccinated, and adopted her into our household. Her name is Cinder. Son went to take the trash cans out without thinking to see if there were cats in the garage and out she went. Both Son and I went outside to call for her and look through the bushes, but she was gone. I was really worried and barely slept.
I got up at 5:30 AM and sat outside on the patio, calling her name very quietly. Within a few minutes she showed up meowing and rubbing up against my legs, but she would not let me pick her up. I came inside, put the other two cats in the laundry room, and opened the back door. She just sauntered in and plopped down on the rug as if it was no big deal! Thank God! |
posted Friday December 23rd, @06:50PM
Thursday December 22nd
(jump earlier later)
Glad today is over! The infusion rooms at this center beat the main campus hands down with one exception, the visitor chair. Dang, that thing is like a torture device after two hours.
I made lunch to bring with us as there is no cafeteria or anything and I was glad I did. Hubby got hungry and ate all his lunch except for the grapes. After lunch he slept. He woke up each time the IV bag needed changing thanks to that infernal beeping those things do, but he went back to sleep just fine.
Everything was very festive! The nurses were all wearing blinking Christmas light necklaces. There were patients bringing presents of baked goods and whatnot to the nurses. I can see where we might have done that if this hadn't been our first day in the infusion therapy clinic.
Three day weekend! We don't have to report back until Tuesday.
Merry Christmas! |
posted Thursday December 22nd, @09:16PM
Wednesday December 21st
(jump earlier later)
Day 2 included a visit to the medical oncologist (Dr.T) onsite at our local clinic. We both like her a lot and we are happy to have her. She spent lots of time going through hubby's extensive history and listened and asked questions. She will keep in touch with the doc at the main campus to coordinate treatment.
At one point during the visit Dr. T looked a me and said "you look very stressed out" to which I just shrugged in response. Then I started getting all teary eyed and choked up hoping nobody would notice. I don't know why that happens. I am okay until someone points out that maybe I'm not. 
Today was day 3 and it was short and sweet. Well, maybe just short. Tomorrow will be radiation and then chemo for three hours. This will be a long day as nothing ever goes as expected.
When we got home today there was a call from the main campus regarding a new appointment at the gastrointestinal center. Ack, I guess they are now wanting to look into that issue in the midst of everything else going on. It would not be a good idea to do any kind of procedure during chemo and radiation.
We are settled in for the evening and dinner is on the stove...Peasant Pasta. Son and I made some fudge a while ago. Hubby has been nodding off in his chair, but still interested in what's cooking.
Can't wait for bedtime! |
posted Wednesday December 21st, @07:30PM
Monday December 19th
(jump earlier later)
Day 1 of treatment was not without some confusion. The chemo appointment never got set and they were late in getting him into the radiation. Once he was in and the preliminary stuff was done, it went pretty well.
While he was in there the chemo consult magically appeared on his schedule. Tomorrow he will have his radiation treatment and then go upstairs to consult with the chemo doc and then? Hopefully the chemo will be set for very soon as it really needs to be done in conjunction with the radiation.
Still no mention of the biopsy. |
posted Monday December 19th, @09:03PM
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maggie2101