Saturday April 14th
(jump earlier)
Update time! Last night was the last of the IV meds, but the two lines must be flushed with heparin twice a day. I can handle that, no problem. The timing is not critical, which means I can lay in bed pretending to sleep for a bit longer than normal.
He had another fall last week...not really sure why that happens. Wednesday at 4:30AM I hear a big THUNK and immediately know what has happened. I jump out of bed and find him sitting on his butt near the door of the master bathroom. At least this time he was not unresponsive or incoherent. He was perfectly capable of telling me he didn't know WTF happened.
We are trying to watch the Netflix movie we have had for almost a month, but I don't think it is going too well. I can't tell if he is awake or not...doesn't matter.
We see the home nurse on Monday for a dressing change, the oncologist on Tuesday, and last but not least the hearing specialist on Friday. OH MAN, am I looking forward to that. It is so hard to communicate with him. I get soooo tired and irritable having to shout and repeat myself. I don't even try having a conversation...we only communicate for basic needs. That makes me very sad. I miss him  |
posted Saturday April 14th, @09:07PM
Friday April 6th
(jump earlier later)
MRI results are good for the current problem, but there are a couple of other spots that need to be watched.  Chest x-ray shows that he has pneumonia. Pneumonia, staph infection, what next? The meds he is getting per IV at home for the staph infection should take care of the pneumonia.
I think I am a bit too overwhelmed to continue this post, so I will just end it with Happy Easter. |
posted Friday April 6th, @09:42PM
Wednesday April 4th
(jump earlier later)
Nothing is going smoothly with this whole home nurse visit thing. The infusion company never told the nursing agency he was discharged, which resulted in the first nursing visit being 5 hours late. She put some extenders on the lumens "for safety's sake" which are completely unnecessary. They dangle down way too far and are very uncomfortable when trying to sleep. I figured out right away that these extenders are only required if the patient has to do everything himself and he doesn't. Off came the extenders when she left.
Yesterday the 2nd nurse was supposed to arrive at 11AM and didn't show up until 4:15. He did the dressing change and took labs. I guess I am an exhausted nerd because I started chuckling about the "lab in a box" remembering Saturday Night Live's D*ck in a Box. Anyway, he won't be back until Monday.
Hubs is now hooked up to his last pod, but they will be delivering some more sometime tonight. Last night they delivered some extra saline flush at almost 9PM.
The nightly fevers remain and he is just weak, short of breath, and slightly confused most of the time. Yesterday's trip to MD Anderson for his MRI wore him out to the point where he didn't think he could get up the stairs to change clothes when we got home. Tomorrow is the big scary day when we find out the results of the MRI. I don't see much sleep happening for me tonight.
Next week we have follow up visits with the infectious disease and kidney docs. I am worried about this infection and the low blood sodium levels. These issues should be gone by now.
Wish us luck for tomorrow! |
posted Wednesday April 4th, @08:00PM
Friday March 30th
(jump earlier later)
Well, he is home now. I don't think he should be home because he is still spiking fevers. I will have to monitor his temp frequently and watch for signs of confusion and joint swelling/pain due to his still low blood sodium level.
The IV meds have been delivered and I will start them tomorrow at 1PM. A nurse is supposed to come by and show me how to do it. I've done it before, but that was in 2008 so I could use a refresher course.
For the last 30 minutes we have been trying to figure out how much children's tylenol liquid to give a 200 lb. man. We are both too tired to figure it out. Off to bed with our thermometer and bottle of grape flavored Tylenol. |
posted Friday March 30th, @09:42PM
Wednesday March 28th
(jump earlier later)
Oh man, this is quite the roller coaster ride.
Temps are up and down all over the place and BP, too. A PICC line is now in place. Today they suspected a blood clot because his arm is swollen. Tomorrow they will do an x-ray of his bowels to check for an obstruction.
Just when I think I can relax a bit and let down my guard, all hell breaks loose. |
posted Wednesday March 28th, @09:46PM
Sunday March 25th
(jump earlier later)
posted Sunday March 25th, @06:18PM
Saturday March 24th
(jump earlier later)
Being too tired to type out a whole post I will just copy and paste the email I sent to family members today:
He called me at 6:30AM to say he wasn't doing that great. BP was very low in the 70s/40s range and temp back up around 101. I immediately got up, ready to go and packed all the things he asked for and arrived and the hospital by 8:30.
When I arrived his fever had broken and his BP was in normal range. It is now 2:30 and his vitals have been good all day. He is still having some issues with confusion but not as bad as yesterday. Right now he is getting a blood transfusion. Hemoglobin was 9.1 yesterday and only 7.6 today...normal is around 13.8-17.2. The transfusion will help with that and also his confusion.
Dr. P (Dr.T's colleague) has been in to see him and it was he who ordered the transfusion. Dr. Yancy, Infectious Disease, has also been in. She said that until the cultures come back they will just continue with a broad spectrum of antibiotics.
That's it so far. He had a shower and has been sleeping most of the day (in between dr./nurse/housekeeping/whatnot visits).
Maggie |
posted Saturday March 24th, @09:40PM
Friday March 23rd
(jump earlier later)
Bye bye port catheter! It was taken out today during the day-long visit to the ER and he is still there, by the way. I had to come home for some rest because I am close to being incapacitated myself from sitting in that miserable torture device they call a visitor's chair for 11 hours. He was close to getting a room when I left so hopefully the patient rooms have better seating for family.
We already had the appointment to get it removed at 9AM today, but hubby had a different plan. His plan was to start acting squirrely during the last 36 hours or so. Then last night his behavior was even stranger. By this morning I absolutely knew something was wrong when he got so weak he could barely walk and then I took his temp...102.7,ACK!!! Very dangerous for a cancer patient.
I had to get Son's help in getting him to the car and run in and get a wheelchair when we arrived. The waiting room was completely empty, but that was just trick. Every last treatment room was full after hubby got into one and there was a 20 hour wait for patient rooms for those being admitted. Damn.
Anyway, when we reported to the ER I told them about the appointment for catheter removal which resulted in quite the kerfuffle of ER docs and Interventional Radiology docs trying to figure out the best way to proceed. New port on the other side? PICC line? Central line? All were discussed and they finally settled on a PICC line but once again hubby had other ideas. During the removal procedure he refused the PICC line.
Back in the treatment room an ER nurse was able to get an IV line in his wrist. He has been on fluids and also antibiotics of various kinds every six hours. I ran home and got some of his formula and a feeding bag and fed him. After a few hours he was doing much better and seemed quite lucid. Finally around 6PM I started making noises about going home and he wanted to sleep so home I went. The nurse stopped me on the way out with good news that a room will be ready for him within the hour. Yay!
First thing in the morning I will be headed back to the hospital to see what the day will bring. |
posted Friday March 23rd, @08:39PM
Sunday March 18th
(jump earlier later)
MIL's visit is over and it went okay. I cooked dinner all but one or two nights and she enjoyed the meals. She went home on Thursday, so I/we have been resting up.
Doc still wants that port catheter to come out. The site is still not healed and the redness persists. We are on the lookout for any signs of infection such as fever or chills and have not had any thus far. Hopefully, it will be able to stay until after the upcoming week full of appointments at the main campus. He is going to need IV access for all of the tests he will be put through. We have all of next week off (YAY) and the following week will be all the scans and whatnot.
I'm making Thomas Keller's Roasted Chicken recipe for dinner along with some roasted asparagus. Hubby will be enjoying his two cans of IsoSource Adult Medical Formula. The last load of laundry is spinning and I predict some serious sloth is going to be happening very soon. |
posted Sunday March 18th, @07:40PM
Friday March 2nd
(jump earlier later)
I am very tired, but since I have to stay up until his bag of water finishes I might as well update this, um, whatever it is.
Some time ago, maybe 10-15 days, the site where the port catheter was placed started to develop a blister about 2" across. The doc looked at it last week during the weekly visit and pretty much said "hmmm...we should keep and eye on this." I pointed out that there was a rather large area of redness radiating upwards from the site. No fevers or anything, but it was worrisome.
Today, being Friday, we again visited the doctor. She noted that what had been a blister was now an open wound and did not look good. I agreed with that assessment and explained what I had done to dress the wound on a daily basis. Nevertheless, she called in a surgeon to look and she agreed that the port catheter should be removed. She excused herself to call the hospital to schedule the removal. Surprisingly, they said to come on over because the radiology dept. had an opening.
Several hours later after the radiology doc has taken him into surgery and looked at it he decides not to remove the port catheter. He came out to the waiting room to explain what happened and it was not infected! He does not want to remove it because if he did then hubby would have no IV access...his veins are really and truly shot.
Back in recovery, hubby is getting dressed and takes off his gown. I looked at him and "ICK what is that stuff all over your belly???" He just looks down and starts wiping with a tissue but I see an angry red patch and stuff oozing down from the site where his PEG tube is placed. ACK!!! I called Marie (the nurse we have gotten to know) and she looked and went to get the doctor. Doctor looks and says "THIS is where your infection is, this is pus!" He poked at it a bit and more pus came out. I thought I smelled something funky while we were sitting in the waiting room, but I thought maybe it was that really old gardenia scented lotion I had but on after my shower.
Apparently pus coming from the PEG tube site is no big deal. Pus coming from the port catheter site would be a very big deal. The port catheter is placed under his collar bone and goes right into a vein close to his heart and any infection would be systemic and a big mess. The PEG tube, not so much.
After all of the above the final outcome is some antibiotics that have to be taken EVERY SIX HOURS and it has to be kept refrigerated and he won't take it by mouth and insists on having it administered in his tube. I will be going up and down the stairs at all hours trying to keep on top of this. It is not quite as bad as the IV antibiotics that require heparin flushes, but it is not pleasant.
I'm even more tired now after putting all this into words. |
posted Friday March 2nd, @11:03PM
Wednesday February 22nd
(jump earlier later)
What was to be a simple 30 min. procedure with 2 hours in recovery turned in to a 10 hour day. The gastro doc could not get the tube inserted?!?!? He eventually gave up. When he came to tell me about it he looked extremely embarrassed. He said there would be two options. 1st option -- have the radiology dept. do it with x-ray guidance and a fluoroscope. 2nd option -- admit him to the hospital and do a surgical insertion. We went with door #1.
Several hours later the radiology doc came to tell me that everything looks good, BUT we don't have the proper gastric tube and we will have to get one from another hospital. That took forever. Once they got it everything went smoothly. He will be passing gas from both ends for a while until he gets all of it out of his system (they have to pump your stomach full of gas to do this procedure).
On top of everything else, the tube is completely different from what I know how to use. I had told the Central Line people I didn't need training thinking it would be the same kind. Oh well, I figured it out and he is sitting there have his experimental 1/2 can of formula to see how he tolerates it. So far, so good. Also, Gracie, our cord chewing cat chewed off the cord that was to attach the metal rod you slip through the pole to keep it from collapsing. I went to get the pole and thought something looked strange. When I first brought it in from the garage that cord was there and the metal peg was clanging against the pole. Now there is nothing clanging. After looking around under furniture and such I found the peg and some of the cord. I hope she didn't eat the rest, but she never has before.
I have a killer headache. |
posted Wednesday February 22nd, @08:15PM
Tuesday February 21st
(jump earlier later)
Sheesh, what a day. I am completely rattled from dealing with so much stuff today. I'm so glad we have Chinese leftovers to eat for dinner as I am way too pooped to cook. Hubby will be having his usual, which is NOTHING. He has lost 12 lbs. in two weeks. If only I could do that.
The PEG tube will be placed tomorrow morning. We have to be at the hospital by 7:30AM. Thankfully, since we started going to the local MD Anderson regional care center, we won't have to leave the house at an ungodly hour. I'm thinking we can be out the door at 7:10 and be on time.
Today I had to arrange the delivery of the canned formula that goes in the bag/feeding tube and all of the supplies required. I have been on the phone all day with insurance (they won't pay for the food and maybe not even the supplies), Central Line Infusion, delivery service, and the hospital. I am still waiting for the someone to email the list of medications he is on, but it doesn't look like that will happen.
I had a minor meltdown at the pharmacy yesterday. After hubby finished getting IV fluids we stopped to pick up the prescriptions I dropped off Friday while hubby was getting his fluids. At that time, they said everything was in stock. I told them I would come back after hubby was finished and pick it up. Before I even got back to hubby they had called him to say they didn't have one of the items. No problem, we can just pick everything up on Monday as we had enough to last the weekend. We even remarked on the way home that it was the first time ever we did not have to stop at the pharmacy or the store or both on the way home...awesome!
So, yesterday we stop by on the way home and they did not include one of the meds in the huge shopping bag full of meds. I ask about it and they told me I picked it up Friday. "I did?" "I honestly don't remember what happened on Friday...I am pretty worn out." And that's when I lost it and tears start to form and then the ladies are all fluttering around saying things like "bless your heart" or "hang in there" and whatnot. I still had a big lump in my throat and tears were threatening all the way home. Sure enough, the missing meds were not at home. I'm just going to ask for a new Rx rather than mess with the pharmacy.
Sigh...just now he tells me he wants to have some of his feedings in bed. That is an awful lot of crap to be hauling upstairs and down every day. Not going to happen. He can come downstairs at 9AM and start his feeding. After a day or two he will have more energy and not mind so much. |
posted Tuesday February 21st, @05:30PM
Friday February 17th
(jump earlier later)
I haven't updated in a while...
Hubby has gotten to the point where he can't eat anything other than the shakes and pudding. Two shakes and one pudding a day is a good day, but those don't happen that often. He continues to lose weight and get weaker and more tired.
Finally, he has given up fighting the feeding tube! He has a consult for a PEG tube with a gastro doc on Monday. Even though the feeding tube business is a lot of work and can be tiresome I am happy that he will be getting proper nutrition, which should quickly lead to him feeling better. Yay!!!
Brother was cremated last weekend. We are tossing around ideas for a family reunion and scattering of ashes in California sometime in the future, possibly early summer.
That's all I can think of right now. It is not even 7PM and I am ready for bed. |
posted Friday February 17th, @07:42PM
Sunday February 5th
(jump earlier later)
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
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maggie2101