Saturday, March 31, 2012

A pleasant lazy day

I picked Tanya up at the Colorado Springs airport last night and we got to the house around 10:30PM. Everybody was tired and we went to bed. Today Marshall's injection pain is finally starting to subside and we have been just enjoying this beautiful day very quietly and relaxed. With a nap here and there. Marshall got a bunch of DVDs from Catherine and from Debbie in Chicago we got two big fat pizzas from Lou Malnatti's. Oh, the memories! And lots and lots of phone calls, cards and emails. We are surrounded with love and support and it feels so good.

Friday, March 30, 2012

At home for 28 days

We did come home yesterday.  (Marshall rested a little bit and then felt like making the trip -- he even drove the whole way!)  It felt so NORMAL!  But by the time we got home he had a lot of pain at the two injection sites where the Firmagon was administered and there was a lot of fatigue, so he went to bed early.  And without a catheter!  I know he was happy to see that catheter go, but I think I was even more happy!  He goes back to Anschutz on April 30 for another injection.

Our animals were so glad to see us after spending the night alone for the first time (they are so spoiled) and we were definitely glad to see them.  Dave and Cathy, our neighbors, pampered them a lot during the day while we were gone.  Such a relief.

This morning he still has injection pain, but he is resting.

I found an online chat room last night with men who have prostate cancer who are being treated with Firmagon and who are doing very well and who are willing to deal with the side effects (injection pain, fatigue, weight gain, developing breasts --  which they are calling "moobs" for Man Boobs) and it was actually fun reading.  They referred to the injections as feeling like being hit with a Mack Truck so every time they go for another injection they say they are getting their Mack Attack.  I think Marshall will enjoy this chat room when he feels better.

Tanya arrives this evening so I will be driving to Colorado Springs to pick her up.  While she's here I hope to do some much-needed self maintenance:  hair cut, manicure, pedicure, etc.....  Looking forward to that.

So today looks like it will be a very good day.  (Oops, forget what I just said -- he is having bone pain now and needed another Percocet, maybe the day will not be the good day I was hoping for...)  :(

Thursday, March 29, 2012

Biopsy is over, treatment has started...

Last night was unbelievably stressful for Marshall. He couldn't sleep and his mind was on all the bad stuff ... not to mention that the catheter was causing excruciating pain. So we were up most of the night. We got to Anschutz at 7:30AM and again, from the valet parkers all the way up to doctors and nurses, this place has the most calming effect. Our urologist was Dr. Paul Maroni. He spent a lot of time with us before the procedure and the best thing that has happened in days --- he took the damn catheter out!! He thinks that maybe the catheter didn't need to be put in in the first place. The hospital was probably being cautious. He will call us with the results of the biopsy in about a week. He conferred with the oncologist while we were there and they decided on a different course of treatment. Instead of the Casodex accompanied with Lupron shots starting on April 12, they decided to give him two shots TODAY of something called Firmagon and then he doesn't come back for a month. He said this stuff should act quicker with fewer side effects. I don't know what changed their minds but it lifted a lot of stress off of Marshall. So now we are back at the hotel resting. Not sure if we are going back to Westcliffe today yet ... there is a little residual pain from the biopsy and Marshall isn't sure he wants to make the drive home today so we may stay another night. That is a real bummer for me because I want to be back home with the animals, but it is what it is.

Wednesday, March 28, 2012

Relaxing at the Quality Inn

We got to Aurora around 3:30 and got settled in. Ordered a pizza. Marshall has a cousin who lives in Aurora so we called Kevin and he came by and spent the evening with us. Very nice diversion. We got lots of well wishes from a lot of friends and relatives today and we appreciate every one of you. Now we try to get some sleep so we are ready to get up at the crack of dawn to get to the hospital. The people at the Quality Inn are wonderful and are giving us a late checkout tomorrow so we can come back after the biopsy and Marshall can get a little rest before heading home.

Off To Anschutz for Thursday's Biopsy

Yesterday (Tuesday), the day started out pretty good.  I had to go to Pueblo to pick up his Calodex that he is supposed to start taking right after the biopsy on Thursday.  I got to Walgreen's and for the second time, they didn't have it.  So I had a minor meltdown right there at the Walgreen's counter.  I called my daughter and she called the University for me and learned that they have a pharmacy and they carry the drug, so we will just pick it up when we get there.

Then I went to Parkview Hospital to try to get all of Marshall's radiological tests on a CD to take to Anschutz.  They've already got the written reports, but since we are happier when we are doing something proactive, we thought it couldn't hurt to have the actual tests.  I thought that might be difficult to get, but they had me fill out a form and gave me the CD on the spot.

While I was off in Pueblo, Marshall went to his appointment with Dr. Bliss at the local clinic in Westcliffe so he could get a relationship started with them for any small needs that don't require the 200-mile drive to Aurora.  Dr. Bliss will now be his primary physician.

When Marshall got back, he was exhausted and went to bed, slept until I woke him up at 10:00P to take his medications.

This morning he takes his first antibiotic in anticipation of the biopsy.  We are leaving shortly to drive up to Aurora, get a hotel and hopefully have a relaxing night.

Monday, March 26, 2012

The waiting game

Today started out good -- Marshall woke up with no pain.  Had a nice breakfast.

I was supposed to go to Walgreen's in Pueblo to pick up his Casodex (a 1-hour drive), but their truck doesn't come in until 2:00 and we won't know till then whether or not the medication will even be there.  That means if I go to Pueblo, it will be this evening.  That's a bummer.

Then we get a call from the oncologist setting an appointment for April 12 to discuss the results of the biopsy (which will be done this Thursday).  Another big bummer because it's such a long time to wait and worry.  And he'll probably have to have the catheter the whole time.  This morning is unusually depressing.

Sunday, March 25, 2012

First 10 days...

March 14, 2012

Marshall woke up this morning with bad chest pain, so we went to the emergency room. They did a lot of tests and could not find a problem with the heart. They did x-rays and couldn't find anything going on with the lungs.  So they did a CT scan and blood work. The scan showed what they called an "anomaly" on his spine and while they didn't tell us this at the time, his PSA was at 49, so he was admitted to the hospital for a full bone scan.

March 15, 2012
Tonight they diagnosed him with prostate cancer.  The regular doctors say that the full body bone scan they took this morning shows lesions in the spine, the ribs, the arms and the legs.  I have no idea what that means, but it doesn't sound good to me.

However, tomorrow they transfer him to the cancer floor and he will see an oncologist first thing and then supposedly he will get a PET scan done, at which time we will find out what stage cancer it is.  And what the treatment options are.

We are both still in a bit of shock.  So many things go through your mind.  After tomorrow we will have a better idea of the prognosis.

March 16, 2012

Frustrating.  We waited all day and the oncologist never showed up.  So we wait another day to see how bad it is and what the treatment will be.  This didn't help Marshall's frame of mind at all.  They have been keeping him on morphine because he is in a lot of pain (his ribs and pelvic area).  They did a pelvic CAT scan today but we didn't get results yet.

Marshall is scared to death.  Tonight I started calling his family.  We are both numb.

March 17, 2012

Without humor, we wouldn't be able to make it.  The nurses here are absolutely wonderful.

We are told the oncologist will be here within 30 minutes.

Once we have some definite info, I will be wanting to find the very best cancer treatment centers.

Oncologist finally got here at 11:30. 
Stage 4 prostate cancer metastasized to bone.
Marshall asked about life expectancy.  He said too early to tell but then mentioned range could be as little as six months and as long as "years" (and when he said that he spread his arms as wide as he could...we choose to interpret that as more than ten years!)
Anyway, he will be in hospital at least another two days and then we go to outpatient.

March 18, 2012

I am still numb and in disbelief. 

Yesterday in the afternoon when they were talking about releasing him today, he became unable to urinate because of the swollen prostate pressing against the internal organs.  So they inserted a "take-home" catheter.  They started him on steroids and on morphine-by-pill and if by this morning (1) the catheter is doing the job; (2) the morphine pills are managing the pain; and (3) the steroids are helping the pain to abate a bit, they are going to send him home.  I am leaving for the hospital shortly.
The next step is to see the urologist.  Evidently the beginning treatment is monitored by the urologist.  That was kind of a surprise.  So I will call the urologist tomorrow morning and see how soon we can get in.  The urologist will probably schedule a biopsy to see what kind of cancer we are talking about, whether it's aggressive or a little slower.  The biopsy is not pleasant and they expect the possibility of bleeding so since Marshall is on blood thinners they may have to delay the biopsy while he gets the blood thinners out of his system.  He hasn't really been taking them for a week now so we are hoping there will be no delay in the biopsy.
The oncologist felt that -- barring anything unforeseen from the biopsy -- they will start Marshall on hormone treatments (he doesn't think surgery should even be considered and I missed the reasoning for that), something called Casodex in conjunction with Lupron.  The point is to kill all of the testosterone (testosterone feeds prostate cancer, did you know that?  I sure didn't) and to continue to keep the testosterone from building.  He said that once we are able to start the hormone treatments, the pain should disappear almost immediately.
The pain is caused by the cancer lesions in the bones.  As the cancer grows it pushes on the bones and causes little tiny splinters that causes the pain and weakens the bones.  So he will also have to be on a bone-strengthening regimen of some sort.
I think that about covers it for now.  When he is discharged I have asked for a complete copy of his records.  I want to take them somewhere else to just get another doctor's perspective (after we get the biopsy).  I don't believe we need to try to get another opinion on the cancer diagnosis, but I would like to see if there are other treatment options that we should at least consider.
As an aside:  Marshall has gotten his PSA levels checked religiously every six months ever since I've known him because his dad died of prostate cancer.  And his PSA levels have never been higher than 3.  His last PSA test was 5 months ago and it was 2.  Now it is 49.  How in the world did this happen this fast?  We are just blown away.
One thing that could have been a trigger is that also 5 months ago, Marshall's new doctor (he finally decided to get away from the VA doctors) told him his testosterone levels were at 180 when they should be between 600 and 1200.  So she started him on testosterone shots.  He was so tickled because he thought that was the answer to the fatigue he's been feeling and the mood swings.  The doctor said it was like male menopause.  But he's only had two shots so far.  However, the oncologist said it is possible that the testosterone shots caused a "tumor flare."  So we don't know whether to be thankful for those shots that brought the cancer to our attention or whether to wonder whether the cancer would have stayed dormant but for the shots.  This just happened way too fast.  Life is really a kick.
Of course, I have been researching the daylights out of this and I found case after case after case where men with Stage 4 Prostate cancer that has gone to the bones have gotten the hormone treatments and have lived relatively normal lives for another 4 to 7 years.  Encouraging..
I am now researching cutting-edge cancer treatment centers.
They have decided to let Marshall come home but he was unable to move his bowels. They spent the entire day trying to get the other end going, but with no luck. (I won’t go into the ugly details on that but some of it involved warm prune juice with butter mixed in!). Late this afternoon the doctor decided to take one more x-ray to be sure there wasn’t any blockage and they determined there wasn’t. So they said he could go ahead and go home. We left the hospital around 5:00.
Had to stop at Walgreen’s to get morphine pills (and, by the way, the morphine is what is causing the extreme constipation), Percoset, and prednisone. He has to take the morphine twice a day for pain, Percoset as needed, and the prednisone every day (also for the pain). They feel he can manage the pain that way while we wait to see the urologist. But he is home at least and that feels good. Just a little bit of normalcy.
Our next step is to call the urologist tomorrow and make an appointment, which I hope to God is immediately. The urologist will see Marshall and then schedule a biopsy so they can determine what grade the cancer is (high grade is aggressive, low grade is slow-growing). After the biopsy, it will take three or four days to get the results. Then the urologist will have us back to see him to discuss a treatment plan.

March 19, 2012
Called the urologist and it appears that we have to talk to his "scheduler" and she is away at a conference for two to three days.  Stress level shot back up to the limits again.

Marshall is so sick today and I feel so helpless.  I called the hospital back and they said to call his primary doctor.  Well, his primary is the VA and they don't return calls.  But the oncologist was kind enough to return my panic call in the wee hours of the morning (God bless him) and he thinks it's the prednisone causing the sickness.  He said to stop the prednisone and give Marshall some Tums and if he doesn't feel better in a few hours I need to get him back to the emergency room.
I have called two urologists so far and neither one has called me back, so getting that biopsy done is getting kind of difficult.  I am trying to get him into the University of Colorado Anschutz Cancer Center in Aurora but so far they haven't returned my calls, either.  This morning I am going to start a call-every-hour campaign.  It makes a person understand someone who takes a gun and starts shooting.  The frustration level is unbearable.
The internet also says good things about Rose Medical Center in Denver and Rose is next door to the VA, for whatever good that would do.
March 20, 2012

He is on prednisone, morphine, percocet, stool softeners, laxatives (which so far have not accomplished a thing), and this morning when the doctor asked if Marshall was still taking his Prilosec, Marshall said, "I'm taking whatever you give me."  So for the first time I learn that he hasn't been taking any of his regular medications (diabetes, blood pressure, and on and on) because he was depending on me.  Ohmygod.  It didn't even occur to me to question whether he was taking his regular everyday meds.
If he needs to go back to emergency today, I believe I will call 911 so that he has care on the way there.  I sure hope that between the VA and Medicare and our supplemental insurance, a lot of this will be covered. 
Marshall took a few Tums and went back to sleep. I just peeked in and he appears to be sleeping comfortably. I hope, I hope...
I look outside and it apparently snowed an inch or so last night, so if he has to go back to the hospital, I’m calling 911. I am a nervous wreck now and if I had to drive to the hospital with the way he’s feeling (and throwing up), in my frame of mind, and with snow on the ground, they would have to admit me, too.
The truck wouldn’t start yesterday (our 4-wheel drive vehicle) so I called a neighbor and he came up and charged the battery. Something is causing the battery to drain and he doesn’t know what it is. So now I have to get the truck to the shop. We are getting into snow season and if I needed 4-wheel drive, I would be in trouble
March 20, 2012 2:40PM:
The University of Colorado Anschutz Cancer Center has scheduled Marshall for Thursday at 2:15. He will be admitted (at least I think I understood that correctly) for a biopsy and they will keep him at least until they decide on a course of treatment. After that I’m not sure. Now if he can just get to feeling better between now and Thursday.
I just went to the pharmacy to get magnesium citrate, enemas, Phillips Milk of Magnesia, Senna Vegetable Laxatives. I am expecting an explosion (smile).
However, he tried to drink the mag citrate and couldn’t keep it down, so we are back at square one.
I’ll keep you posted. I am excited about the Anschutz thing.
March 21, 2012  7:00AM:
I am a fairly strong person but this is wiping me out. Marshall’s daughter will be here on March 30th but she can only stay for three or four days. I intend to let her take over for those days.
One of my biggest stresses right now is finding people to watch the animals while I’m gone. They have never spent the night alone and it looks like I’m going to have no choice but to get them used to it. We have plenty of friends who will come over during the day and feed them and play with them and let them out, but not many who can stay the night. Our dogsitter is being wonderful and she is covering the time I’ll be at Anschutz, at least for three nights, and then after that we’ll see.
One wonderful neighbor brought me a big thing of soup and some french bread last night and it was the best chicken soup I’ve ever had. Eating is so far from my mind.
Marshall is no longer taking phone calls. But that’s understandable. I hope we are coming to a point where he can have some good days. right now it’s just the medications causing him problems and the catheter is no fun, either.
He made it through the night without throwing up, so the steroids are apparently now out of his system.  He slept fairly well last night.  This morning he was able to keep liquids down, a little yogurt, and his medications. 
He drank some of that magnesium citrate this morning and finally he was able to go to the bathroom.  That was making him so miserable.  He is going to try his best to not take any more morphine and just use Percocet for the pain so he can avoid the constipation.  He's mostly sleeping.

We were laying on the bed holding hands when we noticed a rumpling of his t-shirt.  We felt it and it was a lump.  Oh, god....
The Anschutz Center has been awesome so far.  They called this morning to see if I was doing okay and if there was anything they could do for me while I'm tending to Marshall.  Wasn't that exceptional?  And the urology/oncology nurse sent me an email as well inviting me to call her as often as I'd like with questions.  You can't ask for more than that.
Our dogsitter is going to stay here for several days so that worry is alleviated for the time being.
And tomorrow when we get to Anschutz I am told we just pull up to the front door and an aide comes out with a wheelchair and takes Marshall directly to where he is going.  And a free valet service parks the car.
So all in all, I'd say things are moving along as well as anyone could hope.  We are both really looking forward to tomorrow to get things moving. 
March 22, 2012, 7:51PM:
Left the house at 9:00 AM to drive up to the Anschutz Center in Aurora.  We got there around 1:00.  A valet ran out to park the car.  A wheelchair was provided to get Marshall upstairs.  When we got upstairs a coordinator rushed us into a comfortable room where Marshall could lay back and relax.

This place is awesome.  But they couldn't do a biopsy this time because today was a series of meetings with doctors and nurses and really getting to know us, in a very caring empathetic way.

Anyway, they said that he definitely has Stage 4 prostate cancer that has metastasized to the bones. It is incurable, but treatable.

They were very optimistic and discussed the possible treatment options available based on what they think the biopsy will show and they talked about some exciting new drugs that have recently been approved.

They said the cancer is incurable but they believe very treatable.  They said that almost every man with cancer like Marshall's responds to the hormone treatment for at least eight months. And if they stop responding, there are other options.

The one doctor felt the lump on his chest and she said she was just positive it was not cancer.  She thinks it is just what everyone has at the base of their ribs.  She thinks it has been there all along and we just noticed it because of our stress.  BIG SIGH.....
They said there is a spot on the ribs and a spot on his right leg.  There is concern about the strength of the leg bone because it is weight bearing but he can take meds for that when the time comes.

Anyway, our moods are so much better. We have to stop at a pharmacy and find out how much this one drug is going to cost.  A quick Internet search hints that it will cost us around $250 a month out of pocket.  We are going to stop at the VA and see what they may cover, if anything.

They need to do a biopsy to determine whether it's an aggressive cancer or a slower one. (They wanted to send us back to Pueblo for the biopsy and we both said no, we want to come here. So there will be some long trips, but worth it for the peace of mind and the utter calm in this place.)

We think we'll be going back this next Thursday to get that done.  Right after the biopsy is done they are going to start him on a hormone therapy intended to kill off the testosterone because the testosterone feeds the cancer.  We should have the results of the biopsy a week later and then if they need to adjust the treatment they will do it at that time.  But unless they discover something unexpected from the biopsy, he will take a hormone pill every day and get a hormone shot once a month.
The oncologist said that almost every single man with this kind of cancer responds to this treatment for at least 8 months and some go well beyond that.  If and when he stops responding to the treatment, the doctor said there are some very new exciting treatments that have just been approved and we can move on to one of them.
The cancer that is in the bones is going to cause weakening of the bone and I guess we'll find out what to do about that when we go back.  The spot in his ribs isn't as worrisome because it's not weight bearing.  But the spot on the right thigh could weaken the bone enough to cause a broken leg.  So we have to be careful about that.
He has an at-home catheter right now and will probably to have it in for several more weeks.  It's not pleasant, but it has to be there because the biopsy will likely make the prostate swell again and it's better to leave it in than to remove it and have to re-insert it (ugh!).
The thing that has us reeling is that one of the doctors he saw a month or two ago said his testosterone levels were very low and she started him on testosterone shots.  The oncologist at UCH told us that testosterone is the WORST thing you can do when there is prostate cancer present.  He says it causes a cancer "flare" that shoots the cancer out into the body.  That just killed us.

We left Anschutz and got a room at the Quality Inn nearby -- they give discounts for Anschutz cancer patients.  We went out and had a nice dinner -- the first good meal in over a week -- and then got a pretty good night's sleep.

March 23, 2012:

On the way back to Westcliffe, we had to stop in Pueblo to try to get Marshall's medical records from the VA and from Parkview (the clinic where the doctor gave him the testosterone shots).  the oncologist at UCH said he really would like to see as many past PSA test results as we could get.  We figured the VA would be completely uncooperative and Parkview would give us their records if he signed a release.

Well, weren't we surprised.  We went to Parkview first and they absolutely would not give us anything, even when I got hysterical and called them uncaring.  They were very cold and said we would have to fill out the forms and they would send the records in a few weeks.  Unbelievable.

So we were really dreading the VA.  But Marshall went in and came out a short time later carrying a fistful of papers.  They gave him all of his records and they were very sympathetic and understanding.  You just never know...

Then we stopped at Walgreen's to see how much the Casodex was going to cost because it is not covered by Medicare.  They tell us it will be $200 a month.  That's hefty, but at this point it is affordable.
March 24, 2012:
Marshall and I spent most of today crying. This is so scary. I did tons of research on the Internet today and found an awesome forum where guys in Marshall's same condition were able to live five to twelve years feeling good most of the time. They had down times and sometimes hospitalizations, but sometimes as much as two years of normalcy with no treatment at all except bone strengthened. It made me feel better but he wasn't in the mood to read any of them.
But that sick feeling in the pit of the stomach just won't go away. His daughter Tanya comes on Friday for four days and I can't wait. She has been an absolute rock. If she didn't have a job to worry about, I would love to have her stay here a few months and take some of the care away from me.

March 25, 2012

He woke up this morning with pain again.  I was really hoping there wouldn't be any more bone pain now that the testosterone shots stopped and supposedly the tumor flares stopped.  But he took a Percocet and is resting better now.