Monday, December 29, 2014

Family visit

It was a snowy day and very very cold, so I had to leave early to get home -- it was nice to leave Marshall in the hands of his family (they drove here from Ohio):
Sister Audrey, Nephew Donald, Great-Great Nephew Hank

When I left, they hadn't yet decided if they were staying another day or not, but I hope they do stay another day so he has company.  Tomorrow is supposed to be more snow and it is also supposed to get to 20-below.  I may not be able to get there to see him tomorrow.

Sunday, December 28, 2014

Huge improvements

After just five days in the Veterans Home, Marshall has shown great improvement.

He is now eating again and is now able to transfer himself -- without help -- from his bed to his power chair and then from the power chair back to the bed. He still can't really stand up but the physical therapist should start working with him on Monday.

He took himself off of the Dilaudid (pain pill) when he realized it was causing the hallucinations and he has been a different person. Much more alert and more "himself."

Of course, that leaves a hole in the pain relief regimen. They've been giving him the Marinol which helps a lot but not quite enough. The doctor that is assigned to him (Dr. Buchanon) came to see him today and they talked about the different possibilities for pain. They are going to ramp up the morphine from 100mg twice a day to 90mg three times a day and then oxycodone for breakthrough pain.

Then they have to work on the constipation that is caused by the narcotic painkillers.

Some of his family showed up today for a short visit.

So things are going really well. It has now been six weeks since the radiation treatments were done -- and the radiation oncologist had told us that we should start seeing results at six-plus weeks -- so we are hoping there will be some pain relief from the radiation.

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Thursday, December 25, 2014

Getting settled in

First of all, a Christmas "selfie":

Marshall was admitted to McCandless on Christmas Eve and the day was spent getting a medication schedule set, etc. It didn't go well for him because he was in really bad pain again and they wouldn't start pain medication until their pharmacist went through the drug list and approved everything. So it looks like we got behind the pain and have to get caught up again. Marshall was miserable.

They have added a new medication called Marinol, which is basically a marijuana pill. It appears to be helping.

I am not sure when he will see his official doctor here, but I'm guessing probably on Friday.

The oncologist tells me that if he builds up his strength enough that he can tolerate further treatment for his cancer, we can discuss a new plan of action. We got the hospital to do a PSA test and Marshall's PSA has gone down from 35 to 28. Marshall is very motivated. So that's one bright spot.

The physical therapist came in and visited with him. His name is JB and he is muscular and motivating (not to mention gorgeous). He will start working with Marshall Friday or Monday.

I wish we could find out definitively what is causing his excruciating pain in his lower back. And why it is so hard to control. The only thing that really controlled it in the hospital was administered by IV and they don't do IV here at the VA Home.

When I got there today (Christmas) he was doing really well. He decided that getting so much of the pain pill Dilaudid was causing hallucinations (I can vouch for that) so he is trying to cut back. But by 3:00 he was in bad pain again. It was close to time for another Marinol so he opted for that instead of Dilaudid. I had already left to come home, so I'll find out later tonight how that worked. He did so good today the whole time I was there, it felt so normal.

The Christmas meal at McCandless was just delicious. Marshall had a good appetite today and ate the entire meal. All the guys got Christmas presents from the staff today.

He is able to transfer from his power chair to the bed and vice versa without help so that is good progress.

That's it for today. MERRY CHRISTMAS!!

PS: If anyone wants to send him a card:

Marshall Mullins
c/o McCandless Veterans Home
903 Moore Drive, Room 208-A
Florence, CO 81226

His phone will be his cell phone: 719-431-7112. If it turns out he doesn't keep track of it or doesn't keep it charged, I will go ahead and pay to have a land line installed.

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Tuesday, December 23, 2014

Paperwork all done today

I spent most of today at McCandless filling out paperwork and talking to the head nurse.  They showed me Marshall's room (208, BedA) and even though the room has two beds, right now Marshall is the only occupant in the room.  It's kind of nice to start out that way.

If anyone wants to send him a card:

Marshall Mullins
c/o McCandless Veterans Home
903 Moore Drive, Room 208-A
Florence, CO. 81226

His phone will be his cell phone:  (719) 431-7112.  If he has trouble keeping up with the cell phone -- or keeping it charged -- we may just pay to get a land line put in the room.  We'll see how that goes.

Marshall called me this afternoon and said the pain in his right side right under the ribcage has gotten much worse and nobody can tell us what is causing that pain.  I feel so bad for him. But he had another good day with the physical therapists.  He was able to walk the entire floor twice.  Progress.

Tomorrow he will be transferred from Parkview around 10:00A.  I will be at McCandless waiting for him when he arrives to help him get settled and spend the day with him.  I'll have his power chair since I noticed today that almost every veteran resident that I saw had a power chair.  Even though he needs to do some walking every day to build up his muscles, he will need the power chair to get around in general

There were lots of holiday visitors there today and it was really festive.  There were also canine visitors.  I was SO glad to see that.  One woman had an all-white German Shepherd.  I had never seen one of those.  He was gorgeous.

More tomorrow.

Monday, December 22, 2014

On more day at Parkview

Today Marshall was officially accepted into the McCandless Veterans Home in Florence, Colorado. He will be transferred there on Wednesday.

I will not be able to get over to see Marshall again tomorrow because I need to go to McCandless and fill out paperwork and take a week's worth of clothing for him. I'll find out what else he needs (like a TV, etc.) and I'll go out and get that on Wednesday.

Then I'll spend Christmas there with him. That actually should be very nice.

He called this morning and asked what he needed to do to come back home. I told him he needed to build up the strength in his legs so that he could walk again without falling (because I am simply unable to get him back up when he falls). I am just not able to care for him when he is so weak and also when he won't take his meds or leave his oxygen on. I told him this would not happen overnight but that McCandless did seem to have a good rehab program. Marshall said "Consider it done." Then he called me later today to tell me he had worked with the hospital's rehab people today and did very well. So that is very promising.

I spoke to the oncologist today (through his nurse) and he says as soon as Marshall is stabilized and has built up some strength we should come back to see Dr Flaig to discuss further treatments.

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Sunday, December 21, 2014

A quiet day

I was able to do a bunch of stuff around the house last night and this morning and it felt good to get some of that done.

I got to the hospital around noon and Marshall and I had lunch together. He had several periods of forgetfulness throughout today, but all things considered it was a good day.  The x-rays on his leg yesterday showed no broken bones or fractures.  Yay!

The physical therapist came in and got Marshall up and over into a chair for a while. Then back to bed. They will be back tomorrow and maybe do more.

Tomorrow I will not be able to go to the hospital -- I have to stay here because the contractors will be finishing our floor tomorrow and I want to be here to see how it looks and also to pay them. I am also having a desk delivered. So I told Marshall several times today that I wouldn't be there tomorrow. However, when I left the hospital and reminded him again that I wouldn't see him tomorrow, he said, "Oh, yeah, you'll be at the bowling alley."

The intake people from the VA Home should be calling me here at home to get started on Marshall's admission to the Home, so that hopefully by Tuesday he can be transferred. I cried all day yesterday but today I am much calmer. I have to keep reminding myself that I cannot care for him at home any more.

Stay tuned.

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Saturday, December 20, 2014

Addendum to today

Parkview Hospital admitted Marshall today in order to hold him for transfer to another facility. (He told me I was sending him to prison....) When they brought him to his room they asked him to stand up to get on the scale and get weighed. He fell down and hurt his leg and twisted his back a little. (At least the nurses know I wasn't lying when I said he falls down at home.) His leg was bleeding and they stopped the bleeding and then decided they'd better take x-rays just in case because of the cancer in his bones. I guess I'll find out the results of the x-rays tomorrow when I get there. They also gave him pain medication for his back.

They did manage to weigh him and he is now down to 217 from 252 in just about 5 weeks.

They put a catheter in to help him pee and he hated it. So he asked over and over for it to be taken out. They took it out right before I left and said if he didn't produce urine overnight they would have to put it back in.

On the way home it occurred to me that I'm going to have to figure out a way that Marshall can still see his wonderful pets. I would imagine that I could bring a dog into the Veterans Home to visit a patient. I sure hope so.

I've done a whole lot of crying today and he did, too.

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Back to Parkview

Marshall woke me up this morning by banging on the walls till I heard him (I sleep at the other end of the house. When I got to him, he was sitting on the end of the bed saying he really needed to pee but couldn't. He was a bit crabby and was not happy with anything I tried to do.

He wouldn't take his pills (said I was trying to poison him). He said that the tables could be turned on that whole poison thing and I shouldn't think he wouldn't do it. Also, he wouldn't leave his oxygen on.

So I called 911 and they brought him back to Parkview.

I then called the hospice people and started the arrangements to get him transferred over to hospice care since it is very clear that I can no longer care for him at home. I can't lift him when he falls and I can't force him to take pills he doesn't want to take.

Then I came on down to Parkview and was met by several nurses and a doctor wanting to discuss the hospice thing. It seems Marshall is not agreeable to hospice because he would have to give up any treatments for his cancer. So there was some conversation about this and the nurses and doctor wanted to be sure that Marshall and i talked together and agreed together, which we did. He said he understood my feelings totally. That was a relief. I was a ball of nerves when I got here and knew we had to have that conversation.

It was clear that hospice isn't the answer. But they suggested the McCandless Veterans Home in Florence, Colorado. And I thought what a great idea. There are many pluses to that:

* It is much closer to the house so visits would be easier;
* It is totally free for Marshall;
* He would share a room with another veteran and he enjoys his military buddies no matter where he finds them;
* They have a lot of activities, some in-house and some actual outings;
* the facility and grounds are very nice with spectacular views of the mountains;
* They take care of all medicines and all necessary medical equipment (like walkers, power chairs, CPAP machine, etc.)
* I (or anybody) could pick him up any time and take him out for lunch or a play or whatever;
* He is free to check himself out at any time if things improve to the extent that I could care for him again; and, most important of all,
* I could still take him to the cancer center to get treatments for as long s there are treatments to get.

So now I have to cancel the Sangre de Cristo hospice care that I got started and have them come back out and get the hospital bed, the port-a-potty and the oxygen stuff. And then hopefully on Monday we can make the transfer to the nursing home. Or Tuesday at the latest.

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Friday, December 19, 2014


After the whole fiasco of him falling this morning and it taking a half hour or more to get him up, this afternoon around 4:00 or so, he insisted on getting up and walking to the bathroom and he fell again, facing the toilet so that he was straddling the toilet facing the back. He could not get up and I could not get him up. After an hour of trying, and him asking me why in the world the other people in the house weren't helping us (?), I tried to call a neighbor and he wasn't home. Gina was at another job.

So finally I found a small bench and set it up behind the toilet and he was able to slide his butt onto the stool. Then after a little rest, we were able to get his butt all the way on the stool and he was able to turn sideways. Still, I was unable to get him up. His legs kept giving out. So I went and got my office chair (on wheels) and after another ten minutes he was able to get on the office chair and I wheeled him to the bed, only took about an hour and a half total (!!!)

The guy bringing the hospital bed got lost and didn't get here until 11:00PM and when he was bringing the bed in, Marshall asked him if he would do him a favor. The guy said sure. Marshall said, "Would you go out and get me some peanut butter ice cream?" `

And while the guy was bringing in the various things, Marshall kept getting out of bed and losing his balance and if me and John weren't here, Marshall would have been on the floor again.

After John got the bed set up he started bringing in the oxygen setup. The girl that was here today from hospice did NOT describe this oxygen setup to me. What Marshall has right now is a great compact concentrator on wheels. It makes its own oxygen and it fits right in a corner of the room and can be easily moved.

What this guy just brought in is two HUGE HUGE oxygen containers (they are about two feet in diameter and 5 feet tall. And there are TWO of them. They are going to take up half of the bedroom and the oxygen containers have to be refilled every week. And refilling them isn't easy. We have to depend on some guy from Hospice to come out here every week, wheel these monstrous things outside, fill them and wheel them back in. That means disrupting the house every single week. It means my bedroom is so packed you can't walk through it. It means I have to get rid of my floor-standing jewelry box. It means I have to be here at a certain time each week for this process. I am absolutely disintegrating. This feels more like a prison every day. I tried to get the guy to take them back but he says he has to do what the hospice people tell him to do so he has to hook them up and get Marshall hooked up to that oxygen.

I think I may have made a big mistake calling hospice at this point. It's supposed to help me and so far (except for the wonderful hospital bed), it is raising my stress level beyond what I can handle. But the wheels are in motion and once I get my emotions under control I should be able to deal with this. (It is now past midnight and the hospice guy is still here. Sheesh.

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Nurse/hospice care

Yesterday around 10:30 Marshall woke up and said he wanted a cheeseburger. So I went to town and got cheeseburgers for Marshall, me and Gina. He ate three or four bites (and a few bites of the cheesecake i got him) and he went back to sleep. He told me to wake him up at dinnertime and he would eat the rest of the cheeseburger and cheesecake.

I tried to get him up around 6:00 but he wasn't interested.

When I came to bed around 11:00, he had taken his CPAP mask off, as well as oxygen. I tried to put it back on and he wouldn't let me. We tried this little drill several times and he simply refused to have it on, so I let it go.

This morning he got up while I was still sleeping and i heard a loud thud. He had fallen in the bathroom. He landed on top of the cat's litterbox and broke it into many pieces. Marshall did not break any bones (thank goodness) and nothing was bleeding. But I couldn't get him up by myself.

So I called Gina and she rushed over and she immediately checked for injuries before attempting to get him up. Then the two of us got him back to bed and Gina took off to her other job. We tried to put the CPAP back on but he said no, he was going somewhere. I asked him where and he said he thought i was taking him somewhere. We eventually got the mask back on him.

Then he had diarrhea, so I got all of that all cleaned up. I put rugs on the bed for protection since everything else had to go into the wash. He was not able to urinate and he still isn't able to urinate. He is back in bed resting.

So I called hospice in order to get some nursing help. They are sending someone out today to do the paperwork and to evaluate Marshall and see what the needs will be

Stay tuned. This is breaking my heart.

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Wednesday, December 17, 2014

We are home

I'm too tired to say much but he is still in pain and is sleeping now. Very disappointing. It was an awful ride home.

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Tuesday, December 16, 2014

Somewhat better news

Today was a doctor-filled day. The doctors here at Parkview consulted with Marshall's oncologist, Dr. Flaig, all day long. Here's the final results in no particular order (my brain is overflowing):

* Dr. Flaig says there is no reason we need to kill ourselves to get up to see him this week. He says there is nothing going on that can't wait a few weeks. He thinks we should go home, try to relax and regroup and then make a followup appointment. So the hospitalist says that if the pain is still relatively controlled today and tomorrow morning when Marshall wakes up, we will go home tomorrow.

* Dr. Flaig has also told us to discontinue the oral chemotherapy for a few weeks to see if that could have conceivably caused any of the recent problems.

* The palliative care doctor suggested a radioactive drug called Strontium and another one called Xofigo. Both of them hone in on cancer in the bones. We have been asking about Xofigo for quite a while. He spoke to Dr. Flaig and between the two of them they decided that since they think Marshall's main pain right now is low back pain, the Strontium and the Xofigo would probably not help.

* The severe back pain Marshall is having is most likely related to simple low back pain and no matter how they look at the scans and x-rays they cannot relate that pain to cancer. (Marshall has had back problems all his life and had back surgery in the 90s.) The suggestion for that is to use a heating pad and perhaps try alternative things like electrical stimulation or acupuncture. Our chiropractor has a wonderful electrical stimulation gizmo and we will get an appointment with him

* With regard to the other pain Marshall is having (in his right side), the palliative care doctor that spent most of the afternoon with us has recommended 60mg of morphine every 8 hours and then liquid morphine for breakthrough pain.

* They took him off of the IV this evening to be sure he can do well without it so that he can be discharged tomorrow.

* With regard to depression, the palliative care doctor is prescribing Remeron which he says works well with the Venlafaxine Marshall is already taking.

* I spoke with Mario from Sangre de Cristo Palliative Care. He has now received the paperwork from our doctor to get us in the system for care. He says as soon as we get home and get rested, we should call him and he'll come out and we'll go over everything.

* I also spoke with a patient advocate today and she has suggested that we switch our cancer care from University of Colorado (180 miles away) to Rocky Mountain (Dorcy) Cancer Center (60 miles away). She believes that we are at a stage in this disease where the treatments are fairly routine and the lab work can certainly be done in Pueblo so that it really doesn't warrant that long trip (and often hotel stay). She believes that Dr. Flaig could still be our oncologist but give his instructions through the Rocky Mountain Cancer Center. Somehow I don't think it would be that smooth, but it would be a huge relief to stay close to home.

* And lastly, we need to see our primary care doctor (Dr. Bliss) and have him go through the gazillion medications Marshall takes to see if they are all absolutely necessary. With the cancer treatments Marshall has had, for example, his diabetes medication really needs to be overhauled. We have gotten so many prescriptions from so many doctors that it really is time to step back and take a look. It is conceivable that one or more of them could be causing problems. I run them through Drugs.com from time to time, but that doesn't tell me much.

In the meantime, the contractors were at our house today to start laying the floor. Gina says they got there late, took up the carpeting and then left for the day. So what else is new....

Gina will have to leave tomorrow to care for her dad and Marshall and I should be getting home close to when she leaves so that the animals won't be alone all that long, if at all. Here's Gina with her girls (Baby and Annie) and my cutie (Coco).

I think this covers everything. I am so relieved that we now have a little breathing room. I hope all of this has us moving to a calmer, pain-free future.

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Bad night

We stayed up and watched television for a while last night and it was kind of like we were home watching TV, very calm and nice.

He has had a lot of itching around the waistline so before we turned the lights off he asked me to put some lotion on that area, which I did. Within ten minutes, he said the lotion was burning him and we needed to get it off. So we got a wet wash cloth and tried to get all the lotion off. It was driving him crazy.

But from that moment on, he was totally agitated and restless. He wanted his hospital gown off, then back on, socks off, etc. He finally decided to try to sleep and he laid down (and I got settled on my hospital chair-bed). We turned the lights off.

Then I heard him get up and pull his IV stand around. He got the tubes all twisted and we called the nurse in to help get it straightened out. He paced for a while and his breathing was heavy. He refused to put his CPAP mask on. He finally seemed to calm down so I went back to sleep.

Throughout the night I heard him push the call button over and over for pain relief. We will see what today will bring.

I am starting to get worried about our animals. Gina can only stay through Wednesday and then she has another job she is committed to. (Cathy, if Marshall doesn't get released today or tomorrow, I may call you to see if you could run by the house twice a day and feed them and let Coco out -- I'll try to call you later today.)

I may just cancel the guys doing the floors. Way too much to keep track of.

More later.

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Monday, December 15, 2014

Still in Hospital

I got back to the hospital today around 10:30 and Kevin and Angie left shortly after that to drive back to Wyoming. They will try to come back at Christmas.

I got a message from the oncologist's nurse Margie and she said Dr. Flaig would like to see the lab work that was done here at the hospital. So I spoke to Marshall's nurse and he says everything got faxed. However, I did not get a return call from Margie.

We saw the hospitalist late today (I will call her Dr. S because her last name is Suryadevera) and she said that the blood counts were off a bit but not so much to be alarmed about. The nurse who called me at home yesterday led me to believe there were some real problems with the blood counts.

Dr. S is more concerned about Marshall's pain. They have managed to get it from a level 10 down to a level 5 by using IV Dilaudid. The doctor did not want to release Marshall until we had a better pain management plan in place. She said that only way she would feel comfortable releasing him would be if he was released directly into the care of his oncologist.

She said that first thing tomorrow morning she will call Dr. Flaig (1) and see if Marshall could stay right here at Parkview and Dr. Flaig could get any tests he wanted done by Parkview personnel, which would be ideal; or (2) see if Marshall could be transferred to University of Colorado Hospital by ambulance so that he could keep the IV painkillers.

This doctor also suggested a fentanyl pain patch - she will talk to Dr. Flaig about that as well.

Marshall is on a liquid diet for the time being and he has actually been eating it.

He seems much calmer and more alert here at the hospital than he was at home.

Our dogsitter can only stick around through Wednesday so I'm going to need to be back at home Wednesday night. I keep telling myself everything will work out, everything will work out....

Kevin brought Marshall a popsicle so that he could have something a little different and yet remain on his liquid diet -- here's a silly picture:

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Sunday, December 14, 2014

To add to everything else, it is snowing!

I got to the hospital last night around 10:30PM. Marshall's nephew Kevin and Kevin's fiance Angie were there and had spent the day at the hospital with Marshall. They left and got a hotel and I spent the night with Marshall.

The plan was that I would come home this morning and get Marshall's medications and then drive back to Parkview Hospital, get Marshall released and drive up to Denver and get a hotel room at the cancer center.

So this morning I hit the road at about 9:30 and after about 35 miles drove into a snowstorm. Visibility was AWFUL. It was clear that I was not going to be able to get back to Pueblo today.

WhenI finally got close to the road that turns off to our house, there was an overturned cattle truck blocking the road and cows were everywhere (poor things, some were limping). There were ranchers on their ATVs trying to corral the cattle and get them off the road. So that was an adventure:

When I finally got home I called the hospital and learned that they are not going to release Marshall today because his blood counts are low. I knew something was going on because during the night they kept coming back to get more blood because they said it was "murky" and they weren't able to do the tests. When they finally did, the counts were low. I'm waiting for the nurse to call me back and elaborate.

So I guess I'll cancel our hotel reservation and cancel our appointment at the cancer center. I think Kevin and Angie will stay with him today since I can't get back there. God bless them.


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Saturday, December 13, 2014

Marshall back in hospital

Last night I went to our firm's Christmas party and had such a lovely time. I walked back to the hotel still enjoying the "energy" of the city. When I got to my room i started getting calls from Gina that Marshall was in extreme pain and wanted more morphine than we were told to give him. She didn't know what to do.

He got on the phone with me and was very very agitated and in pain so I told Gina to give him the morphine that he wants.

She called me back two more times to tell me how agitated and upset he was getting so I told her to call 911 and get him to the hospital. So he is on his way to Parkview Hospital in Pueblo at this moment (9AM Mountain time).

I wasn't able to get a good flight back, but at least there was a flight available. My plane leaves here at 2:00, has a stopover in Houston and arrives in Colorado Springs around 7:00 and then I've got a one-hour drive to Pueblo,. So I should be with him around 8:00 this evening and I'll fill everyone in.

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Friday, December 12, 2014


I got to Chicago yesterday and got checked into my hotel and then met Marshall's cousin Janice and her son Bill (and Bill's partner David). They took me to a Brazilian restaurant called Fogo de Chao and it was incredible. We had a wonderful visit and really enjoyed the meal.

I walked back to the hotel and walked down Michigan Avenue for a while with all the light and music and Christmas shoppers. It was just the best feeling to be back here for a while. When I lived here all those years ago there was a really neat Rock 'n Roll McDonald's. Well, it is now more than twice the size that it was in the "old days":
Today I met my friend Sue for lunch and we decided to take a selfie. I think this is my first-ever selfie (Claudia, we sure missed you!):

And here is awesome city view from my hotel window. I am truly enjoying seeing the big city again. In Colorado my "big city" is Pueblo and somehow that does not do the trick:
I've called Marshall three or four times and he seems to be doing better with me not there. I guess there's something to be said for a change of scenery on both sides of the coin.

Now I'm heading off to our firm's Christmas party! Happy Holidays!

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Tuesday, December 9, 2014

No doctor visit today

Marshall was very tired again today and didn't even wake up except for when I woke him up for medications. I tried to get him up for his doctor appointment today with his primary care doctor, but he just seemed too "out of it" so I canceled the appointment. At one point, he looked at me and said, "We don't have to go to that wedding, do we?" I said no, and he went back to sleep.

He was experiencing a lot of pain today. Sometimes I have a hard time keeping on top of the pain medications and I guess I inadvertently cause him more pain. Makes me feel awful.

I got a call this afternoon from a dietician from the University. She called at the request of our oncologist and she wanted to see if she could help figure out a way to get Marshall to eat and drink. So she talked to me for quite a while and asked a lot of questions.

Based on what I said, she thinks he may be dehydrated. She said that dehydration can cause most of the symptoms that he is experiencing right now (exhaustion/sleeping a lot, mental confusion, nausea, loss of appetite, dark urine and minimal urine output, etc.) The only symptom it wouldn't cover would be the pain. So she said I need to really try to get him to drink more liquids. She thought that if he got better hydrated he would perk up a lot.

So at 5:00 when I woke him up for medications, I tried to get him to drink a larger amount of water and he did the best he could but I obviously have my work cut out for me. (And so does Gina because I leave for Chicago on Thursday and Gina will be staying here for those four days).

And on another note (and this might explain the wedding comment), Marshall got a wedding invitation today addressed to just him. Neither one of us recognize the name of the bride or the groom. We are probably going to feel ridiculous whenever we figure out who it is, but if anyone reading this recognizes the names Renfroe or Felker, would you let me know? The wedding is in Denver at the Eisenhower Chapel.

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Monday, December 8, 2014

Busy day; Marshall still in bed

Well, Marshall is still in bed and not really eating (except for drinking Boost). Last night he asked me to get some fried chicken, so I did. He was able to get out of bed and eat a small dinner, along with a very small piece of pie, and then the pain put him back in bed again.

He got up once today but got nauseous and had a lot of pain so went back to bed. It's been almost four weeks since the last radiation treatment, so I was hoping to see some improvement by now. And we still haven't heard from the doctor with the results of the brain scan.

But today I was able to completely clear out Marshall's office (in preparation for the contractors who are going to put the wood laminate floor down) and I even painted the room. I did a pitiful job, but there just wasn't enough time for a quality job. And I would rather get it painted badly (for instance, I didn't fill in any holes and I painted right over cobwebs) and touch it up later than to have to move all that furniture again some day in the future to do a better job. When the floor is done and everything is back in the room, it will be a thing of beauty and no one will notice the flaws!!

Tomorrow Marshall has appointment with his primary care physician and we're going to see if he will take some x-rays to see if he can find any reason for the pain.

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Sunday, December 7, 2014

A weird morning

I woke Marshall up at 7:30 this morning to give him his first morphine pills. Usually when I wake him up, he takes off his CPAP mask and props himself up on his elbow and takes the pills. Then he goes right back to sleep.

This morning he just laid there and looked at me and didn't talk. I gave him a little time to get himself together but he still just laid there. The pillow was soaking wet with sweat so I got him a fresh pillow.

Finally I took the mask off of his face and propped a pillow behind him and got him to take the pills. Then I got him laid back down, put the mask back on and I went to feed the animals.

When I came back to the bedroom he had taken the mask back off and he was laying at the other end of the bed and when I asked him what he was doing, he said, "Getting ready to go." I asked him where he was going and he just looked at me. I told him we weren't going anywhere today and he said, "Can I go back to bed?"

So he is now sleeping comfortably again. Gina is coming today because I've got to get over to Walgreens and get more prescriptions filled. I'm going to Chicago on Thursday for four glorious days and I want to be sure I don't get behind on any medications for Gina. She's going to stay in the guest bedroom while I'm gone. I've set up a baby monitor so she can hear Marshall if he needs anything.

Then on Monday, Dec. 15, the contractors will be here again to finish putting down the wood flooring in the house. The 15th has turned out to not be a good day since we have to be back at the oncologist's on the 15th, but we've waited MONTHS for these guys to have time to finish this floor and I'm not about to try to reschedule. So Gina will be here for that Monday.

Then I will be back for the rest of the week as they finish it up (they are doing two rooms). So before I head to Chicago I have the fun job of totally emptying out two rooms and, if some extra energy magically appears, I'd like to paint the rooms before the floor is put in. Who among us thinks that is going to happen??? Hah!

But better to stay crazy busy than to sit and dwell on things, right?

The contractor told me that as long as they are going to be here they might as well go ahead and do the master bedroom, too. Now, I really want that done, but that will be a monumental project. First, the furniture in there is heavy and I can't move it by myself (the other two rooms will be a breeze, nothing heavy). But even more importantly, Marshall will need to be moved to the guest bedroom with CPAP machine and oxygen concentrator and all the tubing that goes with it. I haven't decided yet if I want to go ahead with that room just now or not.

So that's today's story.

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Friday, December 5, 2014

MRI is finished

When we finally got to the hospital at 5:00, Marshall started getting anxious about the MRI because he has extreme claustrophobia and he was afraid that he would not be able to get through it.

But after driving 200 miles to get here, he decided to give it a try. So he made it through the MRI and then immediately started throwing up so the technicians were scrambling to get him feeling better. On the way to the car he started shaking uncontrollably but by the time we got back to the hotel he was calmer.

The oncologist has raised the amount of morphine from 30mg twice a day to 45mg three times a day, along with the Dilaudid. Maybe that will help the pain.

It is 7:30PM and he is in bed asleep again. And he hasn't eaten anything today.

Tomorrow we get to sleep in.....

Now we wait for the results.

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Thursday, December 4, 2014

Unscheduled visit to Cancer Center

I've been calling the oncologist's office keeping them up to date on the fact that Marshall has been in bed and not eating for several weeks now. He got on the scale today and he weighs 227 (down from 252). Also, I let them know that Marshall has kind of been in la-la-land with the morphine and Dilaudid he's been taking. But even though he's in la-la-land, I still requested stronger pain pills because Marshall says the pain won't let up.

So today the doctor calls and he wants us up in Denver ASAP (tomorrow) for a full body MRI and brain scan to see if they can find a reason for what's going on. We need to check in at 4:45P and the tests will start at 5:15P

So I have our suitcases packed and Gina will be here tomorrow and Saturday to watch the animals.

Stay tuned.

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Tuesday, December 2, 2014

Still in pain

I had Gina come over again so I could do some errands in Pueblo. Marshall was still in bed when I left the house at 10:00 and still in pain. Still on morphine twice a day and Dilaudid every two hours.

When I got home, Gina said he had gotten up for a little while but pain sent him back to bed. Then this evening around 8:30 he got up again and had a little something to eat and then pain sent him back to bed. I see that as a good sign. Baby steps.... It's just odd that he can get into comfortable almost-pain-free positions in bed but can't do it in a comfortable recliner.

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Monday, December 1, 2014

Still no change

I had Gina come over today and I was able to get out and do a lot of errands (one of which was picking up his Dilaudid pills). And I'm going to do it again tomorrow. I should be able to get all caught up.

Marshall is still in bed and not really eating anything. Last night he managed to eat a little bit of macaroni and a small piece of ham but that was it. It feels like he's been in bed for three or four weeks, but I figured it out and it's only been two weeks and three days. The radiation oncologist did say to give it six weeks.....

When I got home today Marshall was up and watching a movie with Gina but as soon as I got here with the pain pills, he went right back to bed and stayed there.

We still miss Marlee.

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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


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


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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Friday, October 31, 2014


Today the hospital staff dressed up for Halloween. It was kind of fun watching witches whizzing around pushing wheelchairs! And Marshall was treated by a variety of people today -- Freddie Krueger, Pinky Tuscadero from Grease (she was so cool), a zombie and a skeleton. You couldn't help but smile today.

The palliative care doctor came by today and he said he was putting together the regimen of pain management that we would follow when we leave. He thinks we can leave tomorrow or Sunday.

All bodily functions worked well today. All in all, today was SO much better than the past three days. He is eating again and keeping it down. We still have a little ways to go until we can get the radiation, but it was nice to see him a little relaxed for a change.

Our dogsitter tells us things are fine at home but I can't wait to get there . The hospital is making me as comfortable as possible, but home is better.

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Morning report

During the night, the heavy duty pain medication caused Marshall's breathing to slow down to the point where there were nurses in and out of here all night long. So he is on oxygen now..

Then around 6:00A, he was unable to urinate. They did an ultrasound and found that he had quite a bit of urine so they brought in a "straight catheter" which is inserted to drain the urine and then gets removed. They said that they would give him a few hours and if he still wasn't able to go he would probably get a more long-term catheter. They thought that his inability to go might have been related to anxiety.

Around 10:30 he tried again and was able to go so that was good news. It must have indeed been anxiety.

Now they are working on the constipation. They've tried a whole host of things and about an hour ago they gave him a suppository.

With the pain-med pump he has been way more comfortable but the pain level still stays at a 3 or 4. But he thinks he can manage a 3 or 4 pain level, so we'll see what the palliative doctor says later today. I am still hoping to get out of here tomorrow. The hospitalist wasn't optimistic about that.

I miss my animals.

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Thursday, October 30, 2014

Comfortable at last

They FINALLY got the morphine pump up and running so all Marshall has to do is push a button for pain relief. Now we need to work on nausea and constipation.

Once he goes through a whole 24 hours of monitoring how much morphine he uses (along with a separate drug called Dilaudid) then I think they will send us home with a pain medication plan. I hope that will be Saturday.

He just ate dinner and didn't throw it up (and he hadn't eaten anything for two days), so we are making progress.

Can't wait to get the radiation treatments going and hope that will alleviate the pain and let us do away with this heavy duty opiod use.

We are now sitting here watching TV and using our iPads -- all "normal" stuff -- hoping for a quiet pain-free night.

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We just saw a doctor

Dr. Kamell just came by. He deals in palliative care. He and his colleague spent a bit of time with us asking questions and forming a plan for palliative care.

They want Marshall to stay in the hospital for at least two more days so that they can be sure their plan is working for pain, nausea and constipation. (I just made an appointment with the radiation oncologist at the University for Tuesday at 3:30, so hopefully everything will mesh so that we can spend a day or two at home and then head to Denver with a good plan working for pain control.)

They are going to set Marshall up shortly with a pump so that he can control when he gets the pain meds (thank you, Debra, for that suggestion). Not sure yet what the pain medication is going to be, but we hope it's Dilaudid. They will monitor his usage over a 24-hour period and then set up a medication plan based on his own usage that we can take home with us. They are also going to start a new nausea medication and they will get his bowels cleaned out and start us on a maintenance plan for that.

They said his CT scan did not show anything that we didn't already know except for the extensive constipation that showed up. As Dr. Kamell put it, we can't deal with the bottom end until we get the top end cleared out.

They are going to stop the pyridium (that caused the scary red urine) and they are going to do more blood work today.

So that's where we stand as of noon today.

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Thursday, still at hospital

I slept pretty good last night here in the hospital room. Marshall also had a quiet night but the pain whacked him again this morning around 9:00. He was in awful pain and we called the nurse. We were told it would be another 15 minutes and he couldn't handle that. We managed to get the nurse (Kelly) in here quicker and she gave him more intravenous Dilaudid as well as another lidocaine pain patch on his back. He has drifted off to sleep now.

Kelly said they are going to alternate drugs today. They can give IV Dilaudid three hours apart and they can give Percocet three hours apart so they are going to alternate the two so that hopefully he stays comfortable more consistently.

She told us that the red urine was caused by a drug called Pyridium that was added to his mix of drugs yesterday to either treat a UTI or prevent a UTI. That was a relief. We wonder why yesterday's nursing staff couldn't tell us that.

Kelly also said they have requested a palliative oncologist to come and see Marshall.

So now we are waiting for doctors. And for the time being he is resting comfortably..

More later.

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Wednesday, October 29, 2014

Still working on pain control

When I got here today, around 10:30A, Marshall was doing okay. They had put a lidocaine patch on his back, in addition to the Dilaudid. But around 2:00 the pain was back with a vengeance. So the pain patch only was effective for about 6 hours and it's supposed to work for 12 hours. So around 3:00 they gave him more Dilaudid and in a few minutes he started to relax.

He hadn't eaten at all yesterday and this morning he had a few crackers and some milk in order to take his chemo pill. An hour or so later he threw up. At noon he ate a little bit of chicken soup. An hour or so later he threw up again.

A little while ago he went to the bathroom and had blood in his urine, so they took it to do a urinalysis. The nurse came back later and said it wasn't blood and there wasn't an infection so she assumes it is caused by a medication. Hopefully it will clear up by tomorrow.

Dr. Flaig's nurse just called and said that the University Hospital doesn't work with Parkview so she couldn't send orders here for any blood work that the University would have done today if we had made our appointment. However, she said she was sure that -- except for the PSA -- they would do the same tests anyway. She said to keep her posted.

It is now 8PM and no doctor has been in to see us today. This is quite frustrating. Marshall just told the night nurse how upset he is about not seeing a doctor today. My emotions are sooooooooo fragile right now.

I am going to spend the night here with him tonight. Our dogsitter has agreed to stay at the house as long as we need her.

Hope to have news tomorrow.

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Tuesday, October 28, 2014


I just got home from the hospital. He was admitted mainly so that they could get his pain under control, and hopefully to figure out what is causing it. I could have spent the night in his room but I wanted to get back to my animals and bask in their love and support before hearing any more bad news. So I drove the 60 miles home and I will drive the 60 miles back to the hospital tomorrow morning early.

When I left this evening they had FINALLY gotten him some pain relief. He got so many opiods (I think that's the word) today that he won't be able to go to the bathroom for years! But after moaning and calling out in unbelievable pain all day today, when I left he was actually sleeping (they finally got the okay to give him something called Dilaudid). And they had gotten the okay to keep giving him the Dilaudid every three hours. Very hard core painkiller. Morphine didn't work but the Dilaudid did.

They did a CT scan and took blood, but when I left we still hadn't officially heard the results. I heard one of the nurses say that there was nothing remarkable with any of the tests they did, so now what? I guess that means the pain is definitely just the cancer in the bones and he's going to have to live with it until we can get him in good enough shape to get up to the cancer center and get set up for his radiation.

The emergency room doctor suggested that maybe they could transport Marshall up to the University Hospital so that he could be admitted there and get started on his treatment, but I don't know if that idea will fly or not. If they do that, I will have to scramble to get a dogsitter in place....

And I don't know if a CT scan would show fractures or not, but the way he was acting, not being able to take a big breath without lots of pain, I was thinking maybe he had a fractured rib. But what do I know?

I'll post an update tomorrow.

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Had to call 911 for Marshall this morning. He had excruciating pain in his left side and couldn't breathe. I just got to the hospital (1:00). Not sure what's going on. Stay tuned.

The good news is that Westcliffe still has an ambulance service!!  They were there in 16 minutes flat.

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Monday, October 27, 2014

Gearing up for the Cancer Center

Wednesday is our next trip to the cancer center and the anxiety is starting to set in.  And the pain continues.  And taking oxycodone every six hours has brought on another woe -- constipation -- which finally caused an emergency call to the oncologist today.  His nurse called us back and we worked out a plan of attack!

Marshall has been on the chemo pill for over a week now and today for the first time he said there was a lessening of the pain in his hip.  So that sounds great!

Tomorrow will hopefully be a quiet day and then we hit the road early on Wednesday to head to Denver.  I sure hope his pain continues to let up because I do the driving now and it is awful every time I hit a bump of any kind...

Wednesday, October 22, 2014

Keeping the pain at bay

Marshall is having some pretty bad pains in his back and the only thing that will relieve the pain is oxycodone. So he's been taking oxycodone several times a day. We've been concentrating on pain relief, laying low and getting rested.

Nothing else to report right now.

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Monday, October 20, 2014


We got up at 4:45A this morning and headed to Denver for our appointment with the radiation oncologist, Dr. David Raben. He and his associate, Dr. Chad Rusthoven, put up all of Marshall's scans and x-rays and pointed out the "hot spots." They took as much time as we needed and we really liked both of them.

There were two hot spots that they said need attention now. One in the spine and the other in the left hip. Both are places where Marshall has been having some pretty bad pain which has caused him to be on every-six-hour oxycodone.

Dr. Raben is going to talk to Dr. Flaig to see if they think it's necessary to see an orthopedic guy first to check the strength of the hip area before radiating it. He said his opinion is that the area is strong enough to handle the radiation without fracturing but he wants other opinions on that.

Assuming we don't have to see an orthopedic doctor first, we have an appointment for next Wednesday with Dr. Raben to get the radiation areas "mapped" and start preparing for the actual treatments. Then, if everything goes as planned, we will be given our radiation schedule. Dr. Raben says it will be between 5 and 10 treatments (to be determined later) given daily (not sure if that includes weekends or not). So we will just move up to the hotel for that period of time because it is right across the street from the hospital.

If anyone remembers Marshall's last radiation sessions two years ago, you will remember he developed severe radiation colitis which put him in the hospital for three days.  Dr. Raben has promised us that won't happen this time....

Also next Wednesday, we will get lab work done and then we see the Nurse Practitioner to get the results. They want to keep close tabs on the blood counts now that Marshall is on the chemotherapy pill. And I am guessing they will also check the PSA again to see if the chemo has had any effect yet.

We asked if getting chemo and radiation at the same time could cause any problems and both doctors said no, that was actually a really good approach.

So far, Marshall has been experiencing EXTREME fatigue, but no other side effects of the chemo have shown up. Let's hope it stays that way. And we are told that the radiation will probably also add even more fatigue to the mix.

Now we move on to our older dog, Marlee. He is deaf and partially blind and he has some doggie dementia. He walks into corners and can't figure out how to back out of them, when he goes outside he can't figure out how to get back in the house, he falls a lot, etc. etc. But he does not appear to be in any pain. We've done a bit of crying over this because it probably won't be very long before we have to make a decision about him. It is heartbreaking. We're going to get him to the vet this week to have her check him out. It just kills us to leave him behind when we are in Denver for long periods of time because we want to spend time with him.

That's the story for today. It was a very long and emotional day. I had to ignore my job today and I thank the gals who covered for me even though they were already being pulled in ten directions.

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Sunday, October 19, 2014

3rd day of chemo

Marshall has now taken the chemo pill for three days (and the prednisone was reduced to 4mg twice a day instead of 5mg twice a day -- I think they may wean him off of the prednisone) and so far the only possible side effect he feels is fatigue.  But he's had that all along with the other medications, too, so not sure if it's the chemo or not.

The pain he was having in his back has let up.  He didn't take any oxycodone today at all.  So it probably was stress related.  He does still have the hip pain when he moves in certain ways.

Tomorrow we need to get up at 5AM to hit the road back to Denver to see the radiation oncologist and find out what our plan of action is going to be.  Boy, I wish we could just say "Beam me up, Scottie" for these trips to Denver!

Tonight we got on the internet to see what rent costs are in Denver so that maybe we could rent an apartment and we could take our animals with us on these trips rather than agonize over trying to get a dogsitter.  But the rents are pretty high so that may not be an option for us.

Through an interesting series of events, we were able to get a second opinion on Marshall's treatment.  Our oncologist is Thomas Flaig.  Dr. Flaig's boss is Dr. David Crawford at the University Hospital.  It turns out that Dr. Crawford knows Fred (my boss).  A few weeks ago Dr. Crawford was coordinating a big charity golf tournament to benefit prostate cancer research and I got a call from Wendy, a gal who works with him.

Wendy and I talked a lot while coordinating Fred's foursomes for the golf tournament and last week when we were at the cancer center Wendy met us for lunch.  She brought Dr. Crawford with her!  So I couldn't resist asking his opinion.  He said he would check Marshall's records and let us know what he thought.

He sent me an email last night saying that he agreed with Dr. Flaig's plan of action but there was one other drug that he might suggest to add to the mix.  He said he would talk to Dr. Flaig about it and they would get back to us.  That was kind of cool.

And it turns out that Wendy is a patient advocate for many doctors and medical facilities so she is going to be a huge resource for us.  She brought us a ton of information when we met.  We were very fortunate to make her acquaintance.

Off to bed -- tomorrow will be a long day.

Thursday, October 16, 2014

Radiation and chemo

On Wednesday, Marshall saw the dentist. He worked on the dentures some more and Marshall said they felt pretty good when we left the office but within a few hours -- and after eating lunch -- the pain was back. So we will need to see him again.

This morning he got lab work done and then we saw the oncologist. The PSA is now up to 33. Dr. Flaig brought up the scans taken this week and compared them to the scans taken last month and on the bone scan there is a new area in the mid-back. However, when he looked at the CT scan, that new area didn't show up. He said that CT scans take over a thousand images but they can still miss things.

And there is cancer growing in the left hip area.

Dr. Flaig said that even though the PSA is rising, the progression of the cancer is fairly slow. But he says it is time to move on to new treatments. So we are discontinuing the Zytiga immediately.

And he scheduled us with the radiation oncologist to get radiation on Marshall's left hip. We see him on Monday to get it in place.

Then he said there are three options for going forward:

1. A new drug called Xtandi. Dr. Flaig does not recommend Marshall going on Xtandi because a small percentage of men have had seizures as a side effect and have fallen and fractured a bone, which in his words would be "devastating."

2. Old-fashioned chemotherapy (docetaxel) by infusion. Dr. Flaig does not recommend this either because he thinks Marshall has weakened over the past 2-1/2 years and that this type of chemo would weaken him more and make it more likely that he might fall.

3. Chemotherapy by pill (cytoxin). This is what Dr. Flaig recommended, so we are starting cytoxin tomorrow. He said that compared to the docetaxel, the cytoxin is a VERY low dose and the side effects should be minimal. He also said that the cytoxin works in about 40% of men. Marshall will be monitored every three weeks to check his blood counts and kidney function.

So we went to the pharmacy at the hospital and got the cytoxin prescription filled and we had to pay $181. Good grief.

We talked to the doctor about the excruciating pain Marshall has been having and he said that the way Marshall describes the pain it sounds muscular to him. He recommended taking 2 oxycodone every 6 hours and seeing if the pain lets up over the next few days. I personally think the pain could be related to stress (he's been worried about this visit for 5 weeks). I think it will let up now that we have a plan of action.

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Tuesday, October 14, 2014

Scans are done

We got to the hospital at 9:30 and by 1:30 his scans were all done and we headed back to the hotel.

As usual, they had a tough time finding a vein for the port and he had to be sent to the experts who use a computer of some sort to locate a good vein. He was in a much better frame of mind than he usually is for these scans, but he still has a lot of pain so he was taking Ativan and a muscle relaxer, as well as 4 Advils every 4 or 5 hours.

Tomorrow is the dentist and it's not till 11:45 so we get to sleep in and then we will have the afternoon free.

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Monday, October 13, 2014

Getting ready for tomorrow

We made it to Denver and are in our hotel. Trying to stay calm while waiting for tomorrow's tests. Marshall has been having LOTS of pain and has a swollen area in the left part of his back. Scary.

We need to be at the radiology department tomorrow by 10:00A so that he can get prepped for the various scans and tests. We should be done by 2:00.

We will try to relax the rest of the day. Wednesday is the dentist appointment. The dentures just aren't working out and Dr. Dhawan has stayed in touch with us to have Marshall come back in and try to figure out what's going wrong.

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Sunday, October 12, 2014

Back to Cancer Center

We will be there all week to see where we stand and what we do next. Keep Marshall in your prayers.

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Friday, October 10, 2014

We are home!

The trip home was very long and very tiring. We put our luggage out at 6:15A and then the Viking bus took us to Budapest Airport at 6:45A. The airport was gorgeous and was like a huge high-end shopping mall. All kinds of designer shops. I enjoyed browsing (and yes, buying...)

There was a wheelchair waiting for Marshall and they got him seated on the plane. When we got to Frankfurt, Germany, there was supposed to be a wheelchair there for him as well. But there wasn't. The people in the wheelchair area were extremely rude and kept saying "Sit! Wait!" We approached them every 15 minutes or so because we were getting close to time to board the plane. And each time it was "Sit! Wait!" But finally they called us up to get on one of those golf cart type vehicles and we got a lecture from the driver about "Too many people need wheelchair, not enough wheelchair, not our fault if you miss plane," etc.

When we got to the plane they had just finished boarding so we made it but it was close. Very stressful. It was a 10-hour flight and we didn't get much sleep. When we got to Denver we got through Customs easily and quickly so that was a relief.

Then we had a 4-hour drive from the Denver airport to our house. And we were EXHAUSTED. We slept for hours and we are still tired.

It is good to be home! What a great trip!

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Monday, October 6, 2014

Budapest, Day Two and a Half

Photos of our favorite shipmates and photos from today's 3-hour tour with a wonderful driver who was full of fun and serious information.
June and Ted from Britain.

Phil and Yvonne from Scotland.

Our hotel - Le Meridien

Hotel restaurant.

Budapest has many spas -- our driver told us this was the largest hot water spring spa in the world and people come from all over to "take the water."

Hot water springs spa.

Tomb of the Unknown Soldier at Heroes' Square.  Two soldiers are on guard at all times.

Marshall and me in front of the Parliament building.  Incredibly beautiful.
These Budapest photos were all taken on the Pest side of the Danube River.  The driver then took us to the Buda side but the batteries in my iPhone died and I couldn't take any photos over there.  I was SOOO bummed.  The views and the buildings were very different from Pest and I would have loved some photos.

Budapest, Day Two

Yesterday I walked all around the hotel.  Many many shops, but they are all designer shops (Hugo Boss, Tommy Hilfiger, and scores of others) so I didn't go into any of them.

The Harley store was 2-1/2 blocks away, so I got over there and bought more shirts and other Harley paraphernalia.  We wanted shirts that said Budapest.  There were a whole bunch of Americans in there asking for shirts that said Budapest.

Then Marshall and I walked up and down the shopping district.  There was a Starbucks at one end (you know I love my Starbucks...) and the Starbucks took Euros, Forints or US Dollars, so I didn't have to worry about exchanging any money. 

We got back to the room and tried our best to watch TV, but it was beyond our abilities to figure out how to use the TV.  (We didn't have any luck getting on the internet, either). And we were honestly so darn tired that we took a nap that lasted all night!

This morning we went down for breakfast and then over to Starbucks.  We figured out the TV and the hotel helped us get on the internet.  In about an hour we leave for our 3-hour tour of both sides of the city.

Here are some representative photos so far:
Budapest bridge at night

Across the street from the hotel.

Fair across from hotel.
Tomorrow morning we leave for the airport and on our way back home.  May post pictures tonight of our tour today around Budapest (now that we have command of the internet once again!!)