Status Quo

Yesterday I was out almost all day catching up on errands and Gina was here with Marshall.  He pretty much stayed in bed all day and kept the pain at bay with the morphine.

The surgeon never called me back so Marshall will stay in that brace 24/7.  That thing looks so uncomfortable.

Today the Palliative Care nurse came by and spent quite a bit of time here talking to Marshall and then to Gina and me.  She says we should call her any time if we have questions about anything that's going on.  She will help us with changes in pain killers or any other questions we may have.

Tomorrow we head up to Denver so that we will be there for appointments on Thursday.

Lidocaine Ointment

Today I was looking through my arsenal of medications (we could open a pharmacy -- we have two kitchen cabinets filled top to bottom with drugs) and I came across two tubes of lidocaine ointment that had been prescribed for Marshall by the VA last year.  So we tried some of the ointment on his shoulder and he says it helped tremendously.  So I put some more on his shoulder this evening before bed.

He spent all day in bed and just didn't seem to be "with it" at all.  I believe the morphine may be dulling his senses which is okay, I guess, as long as we are controlling the pain.  I don't believe he got up at all today, which is bad.  The surgeon had said that he should at least stand up once an hour.  I should be insisting that he get up, but I just can't bring myself to wake him when he is resting really well.  But when Gina is here I'm pretty sure she gets him up.

I left a message for the surgeon today asking if Marshall could take the brace off for periods of time when he's in bed.  That thing is so uncomfortable for him.

Pain

Are you getting as tired of the word "pain" as we are?  Marshall is now having very bad pain in his right shoulder and his knee.  We think it is probabably arthritis but the doctor said not to take any Aleve because it could cause possible liver problems.  So he is taking the breakthrough morphine for the pain.

Yesterday he stood up twice but I didn't see him do any walking.  Perhaps he did with Gina, I forgot to ask her.  He's been sleeping A LOT.

The palliative care person was here the other day and she went over all of his medications and we signed the form for palliative care.  I can now call a nurse 24/7 and I guess I should probably call her about the shoulder pain.  It seems like I never know what to do, my brain is fuzzy.

This coming week he has to be at the hospital on Thursday to see the radiation oncologist to get "mapped" for radiation, the spine surgeon for a post-op visit, then get lab work done, and then see the oncologist to get the results of the scans that were done at the hospital last week, as well as the lab work.  So since it will be a long day we are going to go up on Wednesday and get a hotel room and then on Thursday after the day of doctors, we're going to stay with Jim and Char in Golden, and come home on Friday.  It will be a nice visit with dear friends.

Then I am assuming the following week will be the beginning of a series of radiation treatments.  We'll have more details on that on Thursday.

Marshall's new look

We shaved the head and the beard. I don't think I would recognize him if I saw him on the street.



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A quiet day

Marshall had no breakthrough pain today. He was also able to use his walker and walk around the house a few times. And his appetite is good.

I even left him all alone for an hour while I ran to town to get our week's worth of mail and he did well.

Tomorrow the palliative care lady is coming for her first home visit. And Gina will be here for four or five hours as well so I can leave and run errands.


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We are home

They finally discharged Marshall around 2:30 this afternoon.  We still haven't gotten the results of the scans.  And we learned that Century denied our request for home health care.  They didn't give a reason.  But at least we do have the palliative care thing.  So a few things still need to fall into place.

The drive home was very pleasant.  He felt good all the way.  We stopped at Walgreens to fill prescriptions for pain medications.

When we got home Marshall went to bed and after a little bit he was in pain again at the surgical site.  He took one of the breakthrough pills and it didn't seem to help.  We'll see how tonight goes.  He was thinking maybe it was the different bed causing the problem.  At the hospital not only could he adjust the bed in a million ways but the bed was constantly inflating and deflating (not sure how to describe that) to keep you from having circulation problems.  That probably helped with the pain, too.

It was so good to see the animals again.  Coco is getting so old and is having problems with his rear legs.  It's heartbreaking.  I miss him when we're gone.

More scans today

Today they took Marshall for another CT scan and a bone scan.  They also got him up and walking several times today.  Medications have been tweaked.  I guess tomorrow we will get the information on what his medications will be and then we should go home.

We hope the trip home is uneventful.  They don't want Marshall to be in a car for longer than 30 minutes at a time, so a 4-hour drive will take us a bit longer.

We will get physical therapy set up again to build his strength so that he can walk better.  And Thursday the palliative care lady will be coming to the house to get all the necessary information to help  us deal with the pain.   And since the pain is mostly surgical pain, they said he may be able to cut back on pain meds in the next six weeks. They've put him on MS Contin for now.

Father's Day

Marshall had a busy day today with physical therapy and doctors coming by, etc.  He was able to get up and walk across the room with his walker and he did a good job.

He felt slightly nauseous today so he didn't eat much.

The doctor may take him off of the pain medication pump tonight so that they can see how well he does without it before discharging him.  He was going to discontinue the pump yesterday but changed his mind.  So right now we are tentatively going home tomorrow but that's not positive yet.

His daughter called him a little while ago for Father's Day -- all in all it was a good day.

I wear my Fitbit pedometer all the time and even though I feel like I'm just sitting around in his hospital room doing nothing, this hospital is HUGE so just going down to the cafeteria and back is a lot of steps.  I've been logging almost 5000 steps a day and that's pretty good when I'm not doing hardly anything.  Of course, the cafeteeria food is good so who am I fooling...

By the way, I asked the surgeon about the way Marshall is so hot above his waist and yet his knees and thighs are freezing.  He said that is perfectly normal when dealing with the kind of spine surgery he had.

Today went well

They got Marshall up this morning and had him sitting in a chair to eat breakfast.  He did well.

A friend came and took me to the Cherry Creek Farmers Market and then we stopped at a little coffee shop to get caught up with each other.  It was such a welcome diversion.  Thank you, Catherine!

When I got back, Marshall was still in the chair and was getting ready to go back to the bed. Up to this point Marshall had one of those buttons to push for pain medication. The doctor came by and said that if Marshall wants to go home tomorrow he is going to have to give up the pain pump today and rely on oral medication for pain to see if he can make it through the night that way before he gets in a car for a 4-hour trip.  Marshall agreed.  So we will see how tonight goes.

So far today Marshall has not had any nausea.  And last night's enema took care of that other problem.  We're getting there.

They just took him down for an x-ray to be sure all the screws and pins are staying in place.  His back is now pretty much totally fused and he won't ever be able to bend or twist.  We will need to invest in a few of those "grabber" things.

Post surgery

Marshall didn't feel so good today.  He couldn't keep any food or liquid down and was vomiting all day long.  They were giving him IV fluids and potassium and other things that he lost due to the nausea.  He is also extremely constipated and they worked at that today as well, with no luck.

They came with his brace and put it on him and he was told he cannot remove the brace at all for at least six weeks.  That is going to be tough because sleeping in that brace isn't pleasant.

The nursing staff is extremely busy with admissions this evening so we are not getting the constant attention we've been getting. :)  Marshall is extremely hot and I've been putting cool wash cloths on his head and when I feel his head it is cool and clammy even though he says he is burning up and he's sweating a lot -- his pillow is all wet.  I felt his legs and they are freezing and yet his feet are warm.  The nurse just came in and I asked her to feel his legs and his forehead and she agreed he was cold and clammy but she did not seem too concerned.  Weird.

They are going to give him an enema at some point tonight.  But while he is waiting for that he is trying to sleep.

Today was surgery

This morning they took Marshall to surgery at about 10:00A.  I was on my way to look at a house so he and I talked on the phone right before he went into surgery.

So I looked at a house in Parker today.  The photos that were posted on the internet made this house look incredible.  But the house was incredibly awful.  I think it should be against the rules to post photos that are not truly representative of what the house looks like.  Very disappointing.

So I got back to the hospital around 2:00.  Marshall got out of surgery around 3:30 and got back to the room around 5:30.  The surgeon said the surgery was successful.  He said they got everything they could see and now the radiation will have to get rid of the microscopic cells. Marshall is on pain medication and he's feeling okay.

They also started him on the Zytiga today.  We are hoping it will work again for Marshall like it did back in 2013.

I left the hospital around 7:30 and came back to the hotel.  Tomorrow I'll check out of the hotel and move in with Marshall until he is released, which may be on Sunday.

Update

Well, surgery won't happen tonight.  The surgeons' communication skills leave a lot to be desired with regard to the time of surgery.  Marshall was left hanging all day long, no food, no water.  Not good.  So we assume surgery will be tomorrow.

By the time Marshall knew there would be no surgery tonight, it was too late to get dinner, so a wonderful nurse went out and got him a cheeseburger.  He said it was delicious, he was so hungry.

The palliative care people came in (5 of them) and spent several hours with us today talking about pain management, power of attorney, what we want out of life, etc.

The chaplain came by for an hour and we chatted and prayed.

Over the course of the past year we met a patient advocate and we have built a great friendship with her.  She came by today and spent quite a bit of time with us.  She also found a renowned prostate cancer oncologist in New York who is willing to look at all of Marshall's records and give us a second opinion, so over the next few weeks we will be gathering all records to send off to him.  He agreed at this point that going ahead with the surgery and radiation is exactly what Marshall should be doing right now.

Then he said that Marshall needs to work diligently on building up his strength and getting strong enough to tolerate chemotherapy.  He will elaborate further after he has been able to review Marshall's records.  It will be great to get a second opinion.  There is always hope.

Tomorrow while Marshall is in surgery I'm going to look at a house.  It is becoming more and more crucial that we get Marshall closer to medical care.

Surgery

Marshall got through the MRI last night and this moning the doctors came by to tell him he had another tumor wrapped around the spine, this time in the lumbar area.

More teams of doctors have now come to see us, all with the same prognosis -- he is pretty much out of options.  

Then Dr. Flaig, the oncologist, came to see Marshall.  He told us that the MRI showed that the cancer metastases in the bones have not really changed, they have remained stable.  But the tumor wrapped around the lumbar spine is problematic because it is growing so aggressively.  Marshall no sooner recovers from one surgery than there's more cancer and another surgery opportunity.

Dr. Flaig said there are two ways to go.  The one he clearly recommended was going into hospice.  The other way is to be aggressive and have the surgery to remove the tumor around the lumbar spine, then get two weeks of radiation and then go back on Zytiga to see if he will respond to Zytiga for a second time.  I asked him about another drug that's out there called Xtandi and he said he has had two patients in the past two weeks who were on Xtandi and who had seizures and really hurt themelves.  He said he is very hesitant to put Marshall on Xtandi but if the Zytiga didn't work and if Marshall still wanted to be aggressive he might try it.

Dr. Flaig said that (1) the cancer is very aggressive; and (2) the Zytiga only works the second time around in 30% of men.  He clearly thought the aggressive way to go would be very tough for Marshall to handle.

Marshall asked Dr. Flaig how much time he has left. Dr. Flaig said that if he goes into hospice he has "long months" to go, maybe 6 to 10.  If he went the aggressive route and had the surgery/radiation and IF the Zytiga works, he might have as much as a year to even two years.   

So Marshall has decided to have the surgery and radiation and give the Zytiga a try.  The surgery will be this afternoon.  Poor Marshall, he hasn't had anything to eat or drink (except ice chips) in two days because they don't want him to eat before surgery and they weren't sure if or when the surgery would be.  He is starving.

I have the hotel room until Friday and then I'm not sure what I will do.  The hotel is $200 a night and it's silly to pay that kind of money when I'll spend most time here at the hospital.  So depending on how the surgery goes I may either just move into the hospital room with him or I may go home for a day or two and then come back.

After the last surgery it seems to me he was released pretty quickly, like after three or four days, and I thought they sent him to the nursing home for rehab.  But I've been reminded that that wasn't the case.  He came straight home (the nursing home situation was at another time).  So I am assuming that will be the case this time, too.  I can see that our CNA (Gina) will have her work cut out for her! because I will definitely be able to uss the help.

Hospitalized

Marshall has been admitted to the University Hospital to try and figure out what is causing the pain. They say he will be here several days.

They did a CT scan this evening and will also want to do an MRI. He is hugely claustrophobic and can get really agitated in an MRI so we will see how that goes.

We should get CT results this evening.

More tomorrow.


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Off to Denver!

The oncologist's office returned my call today and he wants us in his office tomorrow at 10:30A.  So we will need to leave here around 6AM to get there in time.  Dr. Flaig says he may send Marshall straight to get scans or he may even hospitalize him.  Tomorrow will be full of surprises.

Now I have to hope I can reach Gina to watch the animals....  If my heart stays calm through all of this it will be a miracle.

Marshall still has too much pain

Yesterday and today Marshall has pretty much stayed in bed.  He got up a few times but the pain was too much for him.  He is taking the oxycodone every six hours as prescribed and it helps but doesn't really do the trick.  He hasn't been eating much because he says when he chews, the pain goes down his back and it's bad enough to make him cry.

Tomorrow I hope the acupuncturist returns my calls.  And I've also got a call in to our primary care physician to ask about fibromyalgia.  He's only in two days a week so trying to reach him is very frustrating.  Our CNA, Gina, has suggested that his urinary tract infection might be causing some pain, too.  He only has four more days of antibiotics.

I am now on eight days without an A-fib episode, which is wonderful, but since the medications I'm on control the heart rate, I'm wondering how that affects exercise.  If I get on the treadmill for 30 minutes and my body wants the heart rate to rise and yet it can't rise because it's being controlled, is that a good thing or a bad thing?  It's on my list of things to ask the doctor about.

Busy day

I spent today running errands so Gina was at the house with Marshall.  She said he took his pain pills every few hours and spent the day in bed.  Lots of pain still in his lower back.  And lots of fatigue.

The landscaping guys have been here the past few days working on finishing up the xeriscaping (and by "xeriscaping" I mean laying rock) around the house so maybe by Tuesday the real estate agent will take the photos and get this house on the online market.

Clinic Visit

We went to the local clinic today and saw one of the doctors in order to get x-rays.  The clinic only does x-rays on Thursdays.  The doctor leaves a lot to be desired -- I'll leave it at that -- so we did not discuss fibromyalgia.  But we did get x-rays.  The doctor didn't see anything in the x-ray to be alarmed about but said the radiologist would be there later today and would write up his findings.

They sent the x-rays and interpretation to the doctor in Denver who did Marshall's spine surgery to see what he has to say and he probably won't get back to us until next Friday.  In the meantime, the doctor today gave us a prescription for oxycodone which I will pick up tomorrow so that Marshall can switch over from hydrocodone.

I contacted Marshall's Nurse Practitioner at the Cancer Center and asked her about the fibromyalgia thing and she said that to diagnose fibromyalgia you have to go through an 18-point test (at least I think that's what she said) and she wanted to hear what the surgeon had to say first.  So I guess we wait till the end of next week.

Marshall napped a lot today and then came out to the living room for a few hours this evening.  When he got up to go to bed, his right leg kind of gave out and he said it felt numb.  I rubbed his leg and he said he could barely feel my hand.  But as a few minutes passed it felt better so we are assuming his leg went to sleep while he was sitting in the living room.  I'll check on him again in a bit to be sure it's still okay.

I've been wanting to have Marshall give acupuncture a try -- and he is all for it -- and there is an acupuncurist in town so I may give her a call this weekend and get an appointment set up.  And maybe a massage.

The pain continues

Marshall has remained in pretty bad pain all day today and he's been taking an oxycodone (or hydrocodone) every three hours.  Around 3:00 he asked me to take him to the emergency room because he feels like something is really wrong, but then the pill kicked in and he decided to just sleep.  Which is what he's doing now.

I got a message today from a woman who follows this blog because her husband's cancer pretty much parallels Marshall's.  She said her husband has metastasis to his bones just as extensive as Marshall's (and he was diagnosed just a few months after Marshall) and he started experiencing the same awful low back pain Marshall has and he was taking oxycontin and oxycodone.  She took him to the Mayo Clinic and they diagnosed fibromyalgia and they told her that oxycodone and oxycontin can actually bring on fibromyalgia.  They weaned him off of the oxy's and put him on Cymbalta and his pain level went from a 10 down to a 2.  It's certainly worth checking into.  I made an appointment for Marshall at the local clinic for 11:00 tomorrow to get x-rays. We will ask that doctor about fibromyalgia.

Pain is back

Yesterday and today Marshall has been experiencing some pretty severe pain (in the lower back and down his right leg).  It kind of comes and goes, but mostly it comes.  We don't know the cause.  But we took the advice of Nurse Janel and Nurse Margie (the oncology nurse) and we are keeping him on a regular regimen of oxycodone and that has been helping quite a bit.  It breaks my heart to see him suffering like that.

Fortunately, the new drug I'm taking has kept me totally symptom free -- no A-fib for almost a full week.

Drugs are working

Marshall has taken three of the antibiotic pills now and his urinary issues have pretty much all cleared up.  It is wonderful!  Just goes to show that we shouldn't immediately blame everything on the cancer.  We should have gone to the doctor when the problems first started.  He's feeling so much better.  And his mood has been so much better.  He still has back pain which he says feels like the back pain he's had off and on for his whole life and we're treating it with oycodone.

He even took a walk outside today.   By himself.  How cool is that?

We spent some time today getting the house in order so that it will look presentable when prospective buyers come to look at it.  And, as a matter of fact, we had a couple come and look at it today.  It was the daughter of one of our neighbors.  She and her family walked in, looked around quickly, and left without hardly saying two words to us, so they did not appear to be interested.

UTI

The nurse practitioner called today to say that yes, Marshall does have a urinary tract infection which could be causing all of the problems he's been experiencing.  So she prescribed an antibiotic and we picked it up this afternoon.  It will be WONDERFUL if those problems go away in the next two weeks.

We also started weaning him off of the Effexor and the Remeron (both are antidepressants).  In ten days we start him on Wellbutrin.

So we are on a new medication regimen now.  And this next week he goes back to physical therapy.  Today his mood was much better.

I started on my new drug today (Flecainide).

Cancer center

We made the 180-mile trip to the cancer center and it was a miserable trip.  Marshall was in a deep hole of depression and there was basically no conversation at all.  Miserable.

His lab work all came back in normal (or very close to normal) ranges and his white blood cell count raised some more, which is really good.  The Nurse Practitioner said things were going well.  His PSA was 65 (it was 64 two weeks ago so it only went up one point), so even though it's a high number it didn't move hardly at all and that is a good thing.

We discussed some urinary problems Marshall has been having so they took a urine sample and we are still waiting for those results.  They did an ultrasound to be sure he was voiding his urine completely and he was.

Then we discussed depression and fatigue so Kathryn went over his medications and we are making some changes.  He will be weaned off of Effexor and Remeron and he will start on Wellbutrin.  She said that Wellbutrin can generate some energy so he should take it in the morning.  She is hoping that in the next four weeks he will notice less depression and a higher energy level.  And then they will also wean him off of Provigil.  This all sounds very positive to me, but he is still very very depressed.  (We discussed Abilify but Kathryn said that she thought it could cause agitation and that Wellbutrin would be a better way to go.)

Kathryn advised that he start seeing a psychologist on a regular basis to try to help keep him in a more stable mood.

We go back in four weeks to see the oncologist and do lab work again.

My doctor appointment

I know this is Marshall's blog, but today was my doctor appointment so it's the lead story.

First of all, I have learned that the doctor I'm seeing is not a cardiologist.  It is my fault for not being very clear when I made the appointment with the Cardiology Department.  Dr. Huang is an internist who specializes in cardiovascular disease.  But I do like her and for my purposes at this point, she will do just fine.

She went over all my tests with me.  The echocardiogram showed normal heart function and no blockages.  She said that the left side of my heart is slightly enlarged so that is something we have to watch.  It is possible that a slight enlargement is normal for me but we won't know for sure until we repeat the testing in a year.

She also said that a valve that goes to my heart is also slightly enlarged and we will watch that as well.  If it gets larger she believes a valve replacement might be in order.  However, she thought that was highly unlikely.

The stress test was also good.  She said that the majority of people who take the stress test do it at 40% capacity but I did 60% so that indicated a strong heart.

So based on the tests -- and on the fact that the episodes have lessened (and she agreed that the magnesium could be a reason for that) -- she is prescribing an additional drug for me, something called flecanide, to work in conjunction with the Metropolol that I am already taking and, of course, the baby aspirin every day.  She feels that may stop the episodes entirely.  I see her again in two months for a status update.

I am glad to finally have a plan of action.  It makes me feel better.

Now I suppose you'd like to hear a little about Marshall.  Tomorrow we head up to the cancer center for more lab work and a visit with the Nurse Practitioner.  We'll see what the PSA is doing and then maybe schedule repeat scans.  He felt pretty decent today but he always gets majorly depressed over these visits.  So he stayed medicated today.

We're going to spend the night and on Friday we thought we'd drive around in the area where we lived when we were in Denver.  We liked it so if there are houses for sale, we would consider moving back to Henderson, CO.  Our timing sucks, though.  When we sold our house in 2007 we had to pretty much give it away.   Today, the same model house that we lived in is selling for about $60,000 more than we got for our house.  If only we could have held out.....

Our Anniversary

Today is our 25th wedding anniversary!

I don't think he feels like going out -- except for his physical therapy appointment today -- but it is still a very special day.