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Tuesday, March 31, 2015

Another A-fib episode

Tonight I had another Atrial Fibrillation episode. It lasted about 2 hours and it's such an awful feeling. I'm trying to keep track of what I'm doing when the episodes happen so I can see if there are any identifiable triggers. Tonight's episode came when I bent over too fast to pick something up off the floor. The last one seemed to be triggered by drinking somethng hot. And the one before that -- the one that sent me to the hospital in an ambulance -- seemed to be caused by the stress of Marshall being in the emergency room. As time goes on we'll see if any of these things actually were triggers or if it was just coincidence.

The cardiologist I'm going to see next week is Dr. Janice Huang. I looked her up today and she is a Fellow at the University of Colorado Cardiology Department. I think being a Fellow is a pretty good thing, right?

Marshall spoke to the oncologist's office today about his issues with his leg and they told him to take Percocet for two days and see if that helped. They did not believe it was a side effect from the chemo pill. They suggested also that it is possible that the issues with his leg could relate back to the spine surgery and we may send a message to that surgeon as well to see what he thinks.

Monday, March 30, 2015

Cardiologist

Today I decided to widen my search for a cardiologist and found a branch of the University of Colorado (with a cardiology department) located in Colorado Springs, about 75 miles away from our house. Marshall gets his cancer treatments at the U of C in Aurora, Colorado and it has a really good reputation. Also, when we were in Aurora in early February, I went to the emergency room there (for 12 hours) and had a bunch of tests done. Those tests are all available to the U of C in Colorado Springs. I feel pretty sure now that the symptoms I had back in February will be found to be related to the atrial fibrillation diagnosis.

So I called them today and have an appointment for next Wednesday, the day after we get back from Wyoming. I asked to see an electrophysiologist but the scheduler told me that one cannot just make an appointment with an electrophysiologist, one must be referred. So I will see a cardiologist first and if she agrees with the diagnosis of A-fib, she will refer me to an electrophysiologist. I am so glad I will be seeing a doctor sooner than late May.

Marshall's legs have really been bothering him. Could maybe be a side effect of the chemo pills that he is on?

Sunday, March 29, 2015

Update

Well, I haven't been able to find a cardiologist yet that can see me sooner than the end of May, so I guess it will be a while before I can confirm the atrial fibrillation diagnosis and move forward on treeatment options. I've only had one real episode (heart rate about 180 lasting for over an hour) since the diagnosis but I have had quite a few little bitty ones. It's very scary. I will probably need to be on a blood thinner and may need surgery -- at least according to my research with "Dr. Google." I will try to be patient until I can see a specialist.

Marshall has been experiencing pain in his legs now that he is totally off of the morphine. His left knee keeps giving out. So he is wearing a brace on the left knee and putting lidocaine cream on the leg. I'm thinking the pain has been there all along and taking away the morphine just brought it to the forefront. But we left a message for the oncologist.

Marshall's nephew is getting married in Jackson Hole, Wyoming this Saturday and we are going to try to go. We will leave on Thursday and plan to take to take two days to get there. If Marshall's legs can't handle the traveling, we will just turn around and come back.

And hopefully I can handle the travel without any "episodes."

Monday, March 23, 2015

Now I am in hospital

They released Marshall and on the way home I had chest pains and was dizzy so we called 911 and met the ambulance in town. Marshall had to drive himself home and I am now in Parkview. Gina will stay with him to take care of him.

The doctor tells me I have Atrial fibrillation. I will see a cardiologist tomorrow to get the scoop. And I will be talking to my sister since she has had A-fib for quite a few years. I'm sure stress had something to do with this.

I'm so tired.....


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Back to emergency room!

Marshall has had a weird pain in his chest for several days and today it was a stabbing pain. It is in an area where he knows he has a hernia so maybe that's what it is but it moved around a bit today and intensified so it was worrisome. We are in the emergency room (at Parkview...his "favorite" hospital) waiting for various tests to be done.

We went to the clinic in town first (which has periodically come close to going out of business) and the doctor was so ridiculously unprofessional. He said "We all have to die some day." They couldn't do X-rays and they couldn't draw blood. Good grief.

I will post update later.


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Friday, March 20, 2015

TGIF

Another week has gone by. The home nurse called today and said the doctor is going to prescribe something for Marshall to help with the withdrawal symptoms. He thinks she said methodone, but we haven't heard from Walgreens yet so not sure.

Coco hasn't had any issues since last night, so maybe things are resolving. I am cautiously optimistic.

And it's funny, but I'm back on oxygen here at the house. I don't need oxygen outside or even in town, but when I get home and in the house my oxygen levels drop.


And we got a call today from my doctor's office. He has decided he can still keep me as a patient so I have an appointment on May 1st and I will try to start figuring out if I'm having anxiety attacks or if there's anything else going on.

Thursday, March 19, 2015

Morphine withdrawal symptoms continue

The home health nurse was here today and she said she will check with the doctor to see what to do to make the morphine withdrawal a little easier to take.

The physical therapist was here today, too, so Marshall worked with her for 30 minutes.

The mud massage was just as glorious as I expected it to be. I will be doing it again for sure.

And Coco continues to have this little weird problem with his "plumbing" and we are monitoring it regularly to see if it resolves. Otherwise, we are told it is pretty serious stuff. Just what I needed -- something else to worry about. Hopefully it will resolve in a day or two. My worrying is at full capacity already.

That's it for today.....

Wednesday, March 18, 2015

Morphine withdrawal

Marshall is continuing to have pretty severe symptoms that we are pretty sure are still related to coming off of the morphine. The home health care nurse will be coming by tomorrow and they are going to talk about that.

But Marshall has severe insomnia (which is really tough because he takes sleeping pills), uncontrollable tremors, hot flashes, cold spells and pain, as well as others. He is really struggling with this. It seems like nothing will settle down, every day is something new to worry about.

The physical therapist came on Tuesday and got him started back on building his strength. And in the afternoon the chaplain from Humana Home Health Care came by and spent several hours with Marshall. This is his second visit and he really is more of a counselor when he's here than a chaplain. His visits have been very beneficial for Marshall and we've asked him to come by again.

Today I took Coco back to the vet for lab work and he FINALLY got a clean bill of health. He still has some small issues that we need to deal with but we don't go back to the vet for another six months -- unless, of course, we need to. For a 14-year-old dog, he's doing pretty good.

I tried to make an appointment with my doctor today (to get a good physical and see if I am having anxiety attacks or if something else is going on) and guess what! My doctor is now only working two days a week and he is cutting back on his patient load and since I haven't been to see him in a few years, I am no longer his patient. ARRGGGH. I'll try to get a referral tomorrow.

I have an appointment tomorrow to get a "mud massage." Not sure exactly what that is, but it sounded glorious.

Monday, March 16, 2015

Not feeling well

Sunday was kind of quiet and we got all unpacked and settled back at home.  He is starting to wean himself off of the big heavy brace he's been wearing.  It feels good to take it off but then his back gets very tired and he has to put it back on.

Today we went to Pueblo to see Dr. Gonzales at the VA.  It was just a 'touch base' appointment.

We went to lunch around noon and he started feeling bad, some chest pain and other joint pain that got him very depressed since he had gotten used to being pain free.

He's been weaning himself off of the morphine so I did some research when we got home on whether or not there are side effects from getting off of morphine.  And lo and behold, there are quite a few.  So it is possible that part of the reason he is feeling crappy is because of the withdrawal of morphine.  We'll see.

He didn't feel like eating anything and went to bed early.

Tomorrow he starts back on physical therapy.

We have a wedding to go to in Jackson Hole, Wyoming, on April 4.  I hope he ends up feeling good enough to go.

I'm still experiencing what I assume is anxiety attacks, but I'm working on the mindful breathing.  That seems to help.


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Saturday, March 14, 2015

We are home

Yesterday Marshall had his last radiation treatment and we had a relaxing night at the hotel and came home today. The hotel bill was outrageous but we both thought it was worth it to make this whole two weeks more comfortable.

Marshall is now starting to wean himself off of the heavy brace he's been wearing while his spine surgery heals. And he will get started back up with physical therapy to build strength in his legs so he can walk without being wobbly. He is also almost weaned off of the morphine and he remains pain free. So it's looking like a "go" for a period of normalcy.

It was good to see our pets again. Coco is doing really well so that was more good news.

On Monday we head to Pueblo for an appointment with his VA doctor to kind of touch base.

March 17 will be the three-year anniversary of Marshall's biopsy confirming the diagnosis of Stage 4 prostate cancer. We will be starting Year Four off on a good foot.

I forgot to mention that the oncologist put Marshall back on the oral chemotherapy pill (cyclophosphamide/Cytoxan) to treat the cancer. Marshall was on this drug last year but it was discontinued when Marshall started having the back pain and they weren't sure what was causing it. So he will be on it again starting tomorrow. I can't remember if it had any side effects or not (or if we even realized whether or not there were side effects), so I have some research to do.


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Thursday, March 12, 2015

THE BEST DAY EVER!!

We both had a rough night last night, very worried about what today would bring.

We saw the oncologist at 9:30 this morning to get the results of yesterday's scans. The bone scan showed very little change from the scan back in October ... there was maybe one spot that lit up a little bigger than before but not enough to concern Dr. Flaig. And on the other hand there were a few spots that were disappearing.

The spots on the liver haven't changed a bit from the last time they were seen on the scans and they are so tiny it is hard to even find them in the CT scan. Dr. Flaig feels like they are nothing to worry about -- they could be hemangiomas, fatty deposits (which are common in patients with diabetes) or cysts. We will keep an eye on them.

The spots on the lungs are the same as they've been for the past three years and Dr Flaig says they are simply the lungs of an ex-smoker.

So based on the scans and the labwork, Dr. Flaig has put infusion chemotherapy on the back burner. He wants Marshall to go back on the oral chemo (cytoxan) for a few months to see if it works. Marshall was on it before but they took him off when he was having so many problems at the end of the year (which turned out to be related to the drug Dilaudid) and they took him off of the cytoxan at that time because they weren't sure what drug was causing all those odd and goofy side effects. Now that we know it was the Dilaudid we can resume what we were doing with the Cytoxan.

So we start the cytoxan again when we get home and Marshall will be monitored closely for the next few months.

This was all very good stuff. Marshall has no pain, he finishes radiation tomorrow, he is walking better and better with the walker and he has his head on straight again. We are back in the room right now and go back for the 9th radiation treatment at 5:00 today. Tomorrow at 5:00 we have the last radiation treatment and on Saturday we go back home.

Looking forward to seeing our "babies" again and hope Coco's little problem has gotten better.

Maybe we are in for a period of "normalcy."


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Wednesday, March 11, 2015

Day 8

Today was the 8th radiation treatment. Two more to go.

But first this morning we got over there early so Marshall could get his CT scan and bone scan. That all went smoothly.

The oncologist called and said he wants to see us tomorrow instead of Friday to go over the results of the scans. So we will see him tomorrow at 9:30A. We will be on edge until then.

I've been doing a ton of internet research -- I know that's not the best thing to do but it makes me feel better. I found so many things that could cause spots on the liver (fatty deposits, harmless hemangiomas, broken blood vessels, medication reactions, and others), so I am remaining as upbeat as I can.

Marshall is being such a fighter!


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Monday, March 9, 2015

A day of ups and downs

The first visit -- to the surgeon who removed the tumor -- went well. He took some x-rays and said all the screws were still in place and the surgical incision has healed nicely. He said that Marshall needs to wear the brace for one more week and then he can slowly wean himself off of it.

Then we went to get the lab work done, and from there we met our patient advocate friend for lunch.

At 1:00 we went to our appointment with the oncologist. The PSA has gone up from 40 to 43. That is really not bad at all. It's staying kind of steady.

But then the oncologist pointed out some small spots on the liver and said it's not at all clear if those spots are cancer or if they are something else. More scans are in order to find out definitively what those spots are. So now in the middle of a week of radiation he is going to have to get a full body scan and a CT scan and then on Friday we will see the oncologist again to get the results.

Dr. Flaig feels like it is very close to time for Marshall to start having chemo (every 21 days) and we will talk about that on Friday as well. He feels that Marshall needs to be a little stronger before doing chemo so we would need to get through the radiation first and rest a bit before starting it. There are also other drugs available that could be used depending on how things stand with the liver.

So Marshall left the hospital today in a huge depression. It's hard to not be depressed. I must say, though, that he is not going into the kind of depression I've seen in the past.

After seeing Dr. Flaig we went for Marshall's radiation treatment and then back to the hotel. A long and emotional day.

Now we need to see what happens with the scans. Please send prayers and good thoughts our way!


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Sunday, March 8, 2015

Nice quiet weekend

Marshall is still suffering the extreme fatigue from the radiation treatments so he slept A LOT this weekend. He tries to do a little walking, even if it's just across the hotel room and back, to try to keep some of the strength in his legs.

Today I was able to meet a dear friend for breakfast and that was a very enjoyable outing for me while Marshall was sleeping (he didn't get up till about 1:00 today!!)

Tomorrow is going to be tough, so we're going to take the power chair to make it easier on both of us (he can get around really good in the chair and I won't be pushing a wheelchair around). Ordinarily the wheelchair is no big deal but tomorrow we have so many appointments that the wheelchair just won't do.

Tomorrow night I will report on the events/results of the day.


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Friday, March 6, 2015

Day 5

Another quiet uneventful day sleeping in, radiation treatment at 5PM, then dinner, a little TV, some ice cream and bedtime. The only real side effect thus far is extreme fatigue.

Now we have a 2-day break in radiation treatments and start again on Monday.

Monday will be kind of ugly.  9:45 we see the surgeon for Marshall's post-op visit; noon is lab work; 1:00 is the oncologist to get the results of the lab work and talk about the next steps in cancer treatment; and then a radiation treatment.  Marshall will REALLY be tired on Monday.


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Thursday, March 5, 2015

Day 4

Another day of fatigue for Marshall. But no nausea. (And he is still pain free.) By the time we need to leave for the 5PM radiation treatment, he is ready for bed. But we made it through another session, came back, had a little dinner and now he's in bed.

Tomorrow evening we will be halfway through the treatments. The weekend will probably just be lots of sleeping and then next week is the countdown.

Unfortunately, Marshall has been too fatigued to get much exercise in, so when we get home and he starts up with physical therapy again, he will have gone backwards a few steps. Too bad, but he pushes through it all no matter what!


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Wednesday, March 4, 2015

Day 3

Marshall had another radiation side effect today -- nausea. So he took a nap (the other side effect -- fatigue).

We went to the daily 5PM radiation treatment and then came back to the room to do more resting!


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Tuesday, March 3, 2015

We're back.....

I can't say that I'm as relaxed or regrouped as I'd like to be but I'm back anyway.

After Marshall got home from the hospital after the spinal surgery, we had a physical therapist from Centura Home Health come in twice a week to work on his muscle strength again. She made a lot of progress with Marshall. She also arranged for a nurse to come in regularly to check Marshall's vital signs and medications and to also talk about diet. That will be a wonderful thing because she may notice things that I'm too tired to see.

Over the course of several weeks, Marshall's pain diminished gradually until all he had was a bit of soreness from the surgery. So he is weaning himself off of the morphine. He was taking three 100mg morphine pills a day (one every 8 hours) and now he is down to only one every 24 hours. Pretty soon he will experiment with stopping the morphine altogether and see what his pain level is. Hopefully it will be at zero.

We went back to Denver for Marshall to get "mapped" for his radiation treatments. That was a quick one-day trip.

Then we had another emergency visit to the veterinarian for Coco. He has a kind of X-rated problem so I won't go into detail but it requires some additional care for him in addition to his other health issues. Poor little guy.

Then we had to put the physical therapist and the nurse on hold so we could come up to Denver for Marshall's two weeks of radiation. We got here on Sunday, March 1st, and checked into the hotel that we always stay at. It will be a hefty hotel bill but when you consider that so far we have had very little out-of-pocket expense, we thought we deserved the comfort level of this hotel during a stressful time. Yesterday was his first treatment and today was his second. They are scheduled for every day at 5PM (excluding weekends) for 10 days. We are prepared with anti-nausea medication and anti-diarrhea medication just in case. So far, the only side effect he has had is fatigue.

He has slacked off on his exercises but today he got back in the swing of things. It would be terrible to lose ground with his leg strength after all he has put into building it back up.

He still has to wear the bulky intricate brace all the time and he's getting a little tired of it. It looks like a bulletproof vest! We see the surgeon on Monday for our post-op visit and we hope that he will tell us the brace can come off soon. The surgical incision has healed nicely.

He felt pretty good today after the radiation treatment so he wanted to go to Panera for dinner. He decided not to use his walker but instead to just hold onto me to go in and out of the restaurant. Bad idea. On the way out his legs gave out and he kind of slid to the sidewalk. Two lovely young people ran over and got him back up. We won't try that again unless the physical therapist says he is ready for it.

We will also be seeing the oncologist while we're here (on Monday) for lab work and to discuss what kind of treatment Marshall will be on going forward.

I'm still having anxiety attacks (palpitations and balance issues) but after 12 hours in the emergency room, several EKGs and an MRI of the head, nothing was found, so I guess I'll live. Tricia found an online meditation course and we both took it. It helped a lot. The "mindful" breathing showed me that I was constantly holding my breath so now I spend a lot of time concentrating on breathing. I no longer need the oxygen. It was a happy day to learn I don't have to lug that oxygen tank around any more -- and it's a great motivation to keep up with the mindful breathing.

I think I've caught you up. I will try to report regularly from here on out.



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