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Saturday, November 29, 2014

Nice quiet weekend

Marshall is still in bed and still not able to really eat anything. He tried to get up today but it didn't last long before the pain sent him back to bed. He is sleeping A LOT, but we were told the radiation would cause exhaustion.

We have tried to make sure he gets pain pills every two hours but that is not as easy to do as you would think. Time can fly by and before you know it, it's three hours later and, oops, forgot the pill. But all in all we're doing pretty good at remembering and I think it's making a difference.

I spent today sitting in front of a nice fire, listening to Christmas music and writing out Christmas cards. I also enjoyed Thanksgiving leftovers!


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Thursday, November 27, 2014

Happy Thanksgiving!

We hope everyone is having a lovely Thanksgiving.

Marshall basically hasn't gotten out of bed for several weeks now, but he appears to me to be resting comfortably. Today he says he doesn't have as much pain but he just doesn't feel good. I'm still waiting for him to turn the corner and have the radiation kick in and do its job.

I had bought a lot of different dishes for Thanksgiving just in case he was in the mood, but he wasn't. However, I had a lovely meal and a nice quiet day with my boys. I miss Marlee like crazy and every now and then something will hit me with memories (like today I found one of his favorite balls sitting in a corner).

But Marshall and I are thankful today for all of you who continue to support us through this chapter of life. Happy Thanksgiving.


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Monday, November 24, 2014

Tomorrow we say goodbye to our sheltie Marlee....

This is just devastating. But yesterday and today Marlee has made it very clear that he is ready to go. He has stopped eating and drinking -- won't even take his favorite treat -- and he looks at us with those sad eyes while he keeps circling the room over and over and over. He's been kind of sick today, too. I just called the vet's emergency line and chatted with her a while and she agrees that he is asking us to let him go.

So tomorrow at 11:00, I will be at the vet while Marlee moves on to his next life. Marshall can't go because of his bone pain, so I will have Nurse Gina here with him. She is also our dogsitter so she and Marshall will be crying together.

I'm glad we have some tranquilizers here because I don't think I could do this without something to keep me calm and I definitely want to be the last thing he sees and smells.

And with regard to Marshall today, he is still in pain and stayed in bed most of the day, except when we had to go to the clinic here in town so he could get an oxygen test.  So we got that done and within the next week to ten days he should have a portable oxygen concentrator that he can carry around.



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Sunday, November 23, 2014

No change

Marshall is still in bed -- he's pretty much been in bed since last Tuesday. Still in pain, even with the morphine and Dilaudid. The radiation oncologist had said that it could take as long as 6 weeks to see if the radiation did its job, but that it could be as little as 2 weeks. Today is Day 10.

At least the pain isn't at a 10 like it was for so long. He says it is about a 5 or 6 and that it moves back and forth across his back. Weird.

And he got on the scale today. He's lost over 17 pounds in the past few weeks because he just can't keep food down. But today he was able to eat a little bit.


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Thursday, November 20, 2014

Oxygen

We had Gina come to the house again today and I spent the whole day catching up on so many things. It was wonderful to be getting things done without worrying about Marshall.

With regard to the whole oxygen thing, we still have to take the steps to get insurance approval, but with the help of Dr. Bliss we were at least allowed to purchase oxygen without going through insurance. So I came home today with 4 bottles of oxygen. Now he can at least leave the house and not worry about oxygen.

I ran a lot of errands and was gone all day. Marshall stayed in bed almost all day today again. I guess those radiation treatments really zonked him.

Tonight his sugar was very high, so we need to get an appointment with his endocrinologist to get back on track with the diabetes medications.


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Still in pain

Marshall is still in a lot of pain, but we have gotten on a good schedule of morphine twice a day and Dilaudid every 2 hours. I hope today shows improvement. But we are still working on the constipation caused by the opioids.

Marshall has been in bed and pretty much continuously sleeping ever since we got back from the Cancer Center on Tuesday. I wake him up for his medications and he got up once or twice and tried to get comfortable in the living room but he couldn't so he went back to bed.

Radiation is supposed to make you very tired so when you take the radiation on top of the medications, no wonder he is sleepy. But I guess that's a good thing.

Today I'm having Gina come up for the day so I can go and try to get his oxygen situation straightened out, as well as pick up prescriptions.

And in early December we are bringing his daughter and grandkids in for a three-day visit. He hasn't seen them in quite a while, and he isn't able to travel to Virginia right now, so it's time.


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Tuesday, November 18, 2014

Today's trip to the Cancer Center

From my perspective, today was a good day. The PSA went up only two points (from 33 to 35). The NP (nurse practitioner) said that meant the chemo was working and the PSA was stabilizing. We should now see it head downward. We go back on December 18 for the next test.

All of the lab work was right exactly where it should be, so that's good news. He lost 13 pounds but that's because he has been in so much pain that he can't bring himself to eat.

She said the new pain Marshall is having is from a radiation "flare." And even though the radiation oncologist told Marshall he would not experience any side effect pain from the radiation, the NP said it happens quite often. This type of radiation flare usually resolves itself within 10 to 14 days after the last treatment but it could take as long as 6 weeks.

So she stressed that we need to stay on the morphine/Dilaudid regimen for a while to get the pain under control and when the pain starts letting up we will need to wean Marshall off of the painkillers. I tried to get a feel for how we will know if the pain is letting up if we keep him pain free with morphine. She said we will just know. (???)

Now, that was my perspective. Marshall didn't really think any of this was good news. He was in one of those depressions while we were in the doctor's office where he pulls his hat down over his eyes and won't participate in his own doctor's visit. If he is asked questions he gives one-word answers. This puts me in an awful position because I have to answer questions for him and I have to absorb everything that is being said and hope I don't make any mistakes. I should be used to it by now but I hate it.

We've decided it's time for a good family visit so we are arranging for Marshall's daughter and grandkids to come and visit in early December. We only have one guest bedroom, so it will be like a big slumber party!


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Monday, November 17, 2014

More pain

For some reason, some brand new pains have popped up for Marshall, on his right side and across his back (his recent radiation was on his left side). He has been in bed and living on morphine and Dilaudid which still doesn't completely stop the pain. I feel so bad for him. Maybe the radiation caused some swelling that will go away in time? Maybe he is having gallbladder problems (the pain he feels is centered right where the gallbladder is)?

Tomorrow is another trip up to Denver to get lab work done and to get another hormone shot, so we will be able to discuss this new pain with the Nurse Practitioner. But the 3-1/2 hour trip to Denver with him in pain is going to be awful. I sure hope we get some answers.

(Amy, I got that darling card today -- it was a bright spot in an otherwise yukky day.)



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Saturday, November 15, 2014

Home health care

Today we hired our housesitter as a CNA. She stayed with Marshall while I took 6 hours to run errands and go shopping. This was our first time using home health care.

When she house-sits for us, she brings her two doggies with her. We asked her to leave her dogs behind when she wears her CNA hat because we felt that six animals in the house might be distracting in the event Marshall needed her complete attention. She had no problem with that. And, of course, she gets paid quite a bit more as a CNA than she does as a housesitter.

She arrived at the house this morning very professional. She was dressed in scrubs, had a stethoscope around her neck, brought her blood pressure cuff, etc. She even had that big strap with her that I think is to help get someone up who has fallen. I briefed her on the medication situation and I took off.

This worked very well. Marshall was comfortable with her and so was I. I was able to get the errands done without worrying. We will be doing this more often. I don't know if I can get Medicare to pay for it but I'm going to check into it. She is a certified CNA so hopefully I can get her approved. But regardless, she is going to be a godsend.




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Thursday, November 13, 2014

All done with radiation

Today was the last day of radiation. Marshall is pretty tired but we are both glad it's over and we get to go home tomorrow and see our babies. So much has happened that it feels like we've been up here for a month.

Whenever a patient has their last day of radiation, when they come out of the treatment and back into the waiting room, the people at the front desk give the patient a "graduation" certificate and a little pom-pom. And everyone in the waiting room applauds. So we had that little ceremony today. Now we have two of those graduation certificates.

I think even the weather is going to cooperate tomorrow for our drive home. We are, I hope, on an upswing.


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Wednesday, November 12, 2014

Two more radiation treatments under our belt

Yesterday's treatment went well, but Marshall was extremely exhausted. He slept most of the day.

This morning he woke up in extreme pain and took two morphine pills. As the day progressed, he took an Aleve to help with the pain. He is trying very very hard to not take the morphine because of all the issues it brings with it (like constipation). Today's radiation treatment went well but he got light-headed when he got off the table so they brought him back to me in a wheelchair. Tomorrow will be the last treatment.

We got back to the hotel and he says he has pain but at this point it is manageable pain. We are hoping that the next week or two will bring steady relief of the bone pain.

When we came up here last week the weather was very mild so we packed accordingly. Well, as you've probably seen on the news, it is snowing like crazy and some of the lowest temperatures ever experienced at this time of year in Denver. We didn't even have a snow scraper in the car so the hotel let me use a broom to clear off the several inches of snow on the car. I wore one of Marshall's sweatshirts today to go to the hospital and thank goodness we didn't have to be outside much, but brrrrrrrr, it was cold!


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Monday, November 10, 2014

Depression continues

Marshall stayed in a depression throughout Sunday night. I guess every now and then the enormity of everything just hits him.

This morning a whole parade of doctors came through and they all said that they felt it was definitely not the cancer causing the diarrhea and nausea. They felt it was a combination of drugs and they made some changes in the medications.

This hospital is awesome. Almost every doctor or nurse who came in had thoroughly reviewed Marshall's chart and therefore could talk to us intelligently about everything that was going on. At Parkview Hospital the doctors never came in fully prepared. What a refreshing difference.

He was released around 11:00 and we went directly over to radiation oncology and he had his scheduled radiation treatment.

We came back to the hotel and he got down in the dumps again.

I went out and looked at a few mobile home parks. One of them was a retirement community that was just darling. Very nice homes on fairly large lots. I could see us living there. So I went to the sales office only to learn that they have a 2-pet limit. So back to the drawing board.

Another radiation treatment is scheduled for tomorrow.


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Sunday, November 9, 2014

Back in the hospital

Late in the day on Saturday Marshall developed what he called a strange feeling, kind of dizzy, and he had diarrhea for hours, as well as nausea. This went on for a few hours and then he said he felt numb in his groin area and he hadn't urinated in a long time.

So I called the radiation oncologist on duty and he said to bring Marshall to the University Hospital's emergency room, which I did. The diarrhea continued and the nausea continued until you wonder how he could possibly have anything left in him.

They did an MRI and an x-ray and lab work. Then he was finally admitted around 4:30AM. By the time we got settled in the room it was around 5:30AM so we went right to sleep.

Sunday morning they said that the MRI did not show anything unusual. And neither did the x-ray. All lab work was within normal ranges. It is possible that the radiation caused a bit of swelling which could have caused the numbness. So they gave him steroids to try to calm that down. The diarrhea finally calmed down and so did the nausea. They say Marshall should be on anti-nausea medication twice a day now.

They also speculated that the diarrhea may have been caused by the assortment of stool softeners he'd been put on, so we are going to adjust that.

Well, from my perspective things are going along pretty good. The MRI didn't show anything and neither did the x-rays. They are thinking that there was perhaps some swelling that may or may not have been caused by the radiation that pressed against some nerves that caused the numbness in the groin and they gave him steroids for that. That appears to be getting a little bit better.

And he doesn't have much pain at the moment (although they have decided to keep him on a morphine schedule for now).

But, he has fallen into a worse depression than I've ever seen. It breaks my heart and throws me into a depression.

They are not sure if they will release him tomorrow or not, but if they don't release him, they will be sure he gets his second radiation treatment.

Saturday, November 8, 2014

A comfortable Saturday

Outside of waking up for medications every hour or so, we both slept till 10:30 this morning. It felt so good.

I went out and bought snacks for the hotel room so we don't have to pay the hotel's exorbitant rates for food. And now we are spending the rest of the day relaxing.

Marshall hasn't taken any morphine pills yet today so he is definitely feeling better.


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Friday, November 7, 2014

Oxygen

We had an appointment on Thursday with the primary care physician, Dr. Bliss, to get a prescription for portable oxygen. But when the nurse checked the oxygen level it was 95 and she tested it a bunch of times -- even had Marshall walk around the office twice -- and the oxygen level was still within the normal range.

So that was puzzling. When we are at home his levels go down to 77. So it appears that altitude has something to do with it. Our house is at 8300 feet and the doctor's office in Canon City, Colorado, is at about 4800 feet. So they would not approve portable oxygen for us..

However, he obviously is going to need oxygen at home and it would be nice to have portable canisters rather than this long tube running through the house. So when we get home we need to go to the clinic in Westcliffe and get them to do an oxygen reading and, assuming it will also be very low just like the tester we use at home, they should write a prescription for portable oxygen that we can get filled.

And, of course, I am also hoping that once Marshall can get off of the morphine his respiration will improve and oxygen won't be needed at all.

Marshall was still in extreme pain all day yesterday, even with the full doses of morphine and Dilaudid.

Today he woke up with huge pain again. He also had some pretty bad nausea this morning. But we had to hit the road for Denver so I gave him the morphine and Dilaudid and we got going.

It was a miserable 4-hour trip. Every little bump and turn caused him pain and I felt like I was personally torturing him. I was a wreck by the time we got here.

We checked into the hotel and Marshall got a little nap and then we went over to the radiation oncologist's office. The first treatment is now behind us. The oncologist said that it is possible to experience pain relief after one treatment but it is more likely that he won't notice any relief until up to 4 to 6 weeks after the last treatment. He said that if Marshall doesn't feel a relief in his pain level after 6 weeks, then the radiation didn't work. But he said that he truly feels the radiation will work.

Marshall thought he felt better today. We came back to the hotel and he went to bed. He still hasn't really eaten anything for several days but he has had a few bottles of Boost so hopefully he's getting a little nutrition.

We discussed the nausea situation with the oncologist and he said that instead of one anti-nausea pill a day, Marshall should start taking two. So he took an anti-nausea pill before he went to bed. I'll wake him up at 10:00 to take the rest of his daily medications and to get his 10:00 morphine pills.

Tomorrow and Sunday are going to be rest days.


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Wednesday, November 5, 2014

Radiation will start on Friday

We went to the radiation oncologist's office on Tuesday and they "mapped" Marshall for his radiation. They said he will have five treatments starting this Friday (then Monday, Tuesday, Wednesday and Thursday). So I reserved a room at the Springhill Suites for those nights. Our housesitter will be able to be here for those 7 days.

The morphine was really holding the pain at bay but yesterday was a bad day for Marshall so when he finally went to sleep I didn't want to disturb him and I skipped his 10PM morphine pills. Today he slept until about 4:00. I woke him up four times for his scheduled medications and he went right back to sleep. When he did get up he was in really bad pain again. I think that's my fault for missing last night's dose. So we won't miss any more.

He also had some nausea this evening. He tried to eat a sandwich but couldn't. So he hasn't had hardly anything to eat in three or four days. They tell you to have good nutrition (and drink a lot of water) in advance of the radiation treatments. Supposedly it makes things go easier. So we did fairly good on the water, but not on the nutrition part. It's so hard to do everything we are supposed to do.

He went back to bed around 10:00 right after his 10:00 morphine pills. The radiation oncologist sent me an email saying that Marshall should also be on an anti-inflammatory so along with the morphine I gave him some Aleve. Tomorrow we will be picking up the anti-inflammatory that the doctor prescribed (something called Salsalate).

Tomorrow also we will see Marshall's primary care doctor to get the oxygen thing set up. He needs portable oxygen for these trips to Denver. When we went to the hospital on Tuesday, the only thing we had was those great big oxygen bottles and when we got to the hospital they didn't have any of the wheelchairs available that had a slot for the oxygen tank so we had to carry it. We looked very odd with me pushing him in the wheelchair and him carrying a big oxygen tank in his lap. This time when we go to Denver we are going to lug the big oxygen generator along with us, too. Might as well be prepared for the oxygen needed for his CPAP machine.


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Sunday, November 2, 2014

We are home, but.....

We left the hospital around 1:30 and went to Walgreens to fill a bunch of prescriptions. The prescription for Dilaudid couldn't be filled because it is evidently such a heavy duty drug that we have to go through several layers of approval in order to get it. So I will take the necessary paperwork to Walgreens tomorrow to try to get that in the works.

Marshall was fine all the way home. We got home and he was getting all settled to watch a football game when all of a sudden he had trouble breathing. He has oxygen here (he uses oxygen at night) so we got the oxygen out and hooked him up.

I left the room for a few minutes and when I came back, he was face down on the floor. He says he fainted. I was going to call 911 and he wouldn't let me. He says he is not going back to the hospital and delay that radiation any longer.

Somehow he was able to get into bed with the oxygen and he fell asleep leaving me in a total panic.

Since his only oxygen problem here at the house was due to his sleep apnea and he uses a CPAP machine with oxygen at night because of that, and he's never had problems during the day before, I am inclined to think that this evening's episode was brought on by anxiety. I gave him an Ativan a little while ago to calm him. But he is still sleeping with the CPAP mask on.

So now tomorrow I need to get over to the oxygen place and see if we can get him set up for our trip to Denver on Tuesday and if it turns out we need to spend a week or so in Denver, we're going to need to be ready with oxygen. I told him tonight that it is time to start looking for nursing help. After he went to sleep I tried to get a plan together for taking the MANY MANY pills he has to take every day and I was completely and totally overwhelmed.

He needs morphine at 6AM, 2PM and 10PM. If he has any breakthrough pain between those times he gets to take a Dilaudid "as needed." He needs Zofran at 7:30A. He needs chemo at 8:00A. He needs prednisone at 9:00 and 5:00. He needs Prilosec in the morning and at bedtime. He needs Spiriva in the morning whenever he gets up. He needs sleeping pills at bedtime, as well as an antidepressant. He has allergy pills that need to be given twice a day and also "as needed" if there is any coughing.

Then there's the over-the-counter stuff: fish oil, vitamin B, vitamin D3.

Then there's the insulin injection before bed, one blood pressure pill in the morning and a different blood pressure pill at night. And then I need to be sure prescriptions get renewed before they run out (keeping in mind that with things like sleeping pills or antidepressants or tranquilizers you can't renew them too far in advance -- they have to be almost gone before a renewal will be allowed which cuts it very close). When you add the possible need for oxygen on top of that, I'm so afraid that he will have serious health problems because I screwed up on the meds.

But for now, we will limp through this whole radiation thing. At least once we get up there we will be just a block away from the University Hospital. I've sent a message to the radiation oncologist to see if he can tell me now what the radiation schedule will be so I will know whether to pack for one day or two weeks. And also we have to give our house-sitter a little idea of how long we need her.

Let's hope that tomorrow I have little or nothing to report in this blog.



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Going home

We are in discharge mode. Should be leaving in an hour and need to get prescriptions filled. May be home by 3:30 or 4:00.

I will update later.


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Saturday, November 1, 2014

May go home tomorrow

I'm losing my ability to keep up with everything that is going on.

But today they decided to start him on an 8-hour extended release morphine tablet. They gave him one dose this morning and when they give him the second 8-hour dose they will disconnect the pump to see if he can stay comfortable with just that morphine pill regimen.

Marshall says we are leaving the hospital tomorrow whether they want to release him or not. So if we leave and the pain is not under control, life is going to suck. Driving home, hitting bumps that cause him pain, then driving all the way to Denver on Tuesday, causing him more pain, etc...... So I have my fingers crossed that this works.


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