Latest Update from my PCP - 08-14-14

David,
When you were posting your accelerating weight loss recently I had a feeling this was getting to be a red flag and that why I asked about delaying the dental surgery until you have this issue figured out. I hope that it is reversible, at least to some degree. I am also very concerned when your doctor said you have about a month before being hospitalized.

I will throw this out there. Is there a reason why he doesn't think it's the prostate cancer? I ask because you have a rising PSA, and the timing of it. Numbers wise, what would be the odds of a blood cancer showing up over a year ago and causing wasting? I guess in the end it doesn't make a difference as far as the wasting goes. If it's the prostate cancer, perhaps hormone therapy will curb the wasting. If it's a blood cancer, it sounds that they will have to quickly treat it too.

You are in my thoughts and prayers.

So many wonderful responses since I checked earlier this afternoon, let me give an united thanks from my heart and soul. For those that pray, every prayer is appreciated. As usual, I always pray for God's will to be done in my life. I hope it means that I will be healed at some point, but again, being the pragmatic person that I am, it may not be the case. Either way, His will be done.

Other than a high PSA number post failed SRT, there is no evidence of mets anywhere, at least as late as the end of February of this year. It may not be "wasting" disease, its currently on the highly suspect list do the nature of the symptoms. I refuse to worry or get too excited. I am a fact person, and I will base any decisions, treatments or remedies, on the basis of facts found. That's how I have operated my entire life, and it has done me well. Worry, as I often say here, is non-productive and even counter-productive.

It's very possible, that after my PCP talks to my oncologist, they may make a joint plan, they may order fresh MRI's, they may even decide it would be in my best interest to be sent to Duke or some other center of excellence. All options are on the table.

In the mean time, I will live day by day, as I do know. Despite all my physical woes, I manage to keep my mind busy at all times, and still continue to help those around me to the best of my abilities. I will always do that.

I rarely admit to crying, but after leaving my doctor's office, I suddenly became overcome with grief about the situation, and broke down and had a short cry. Later, when updating my wife at work via phone, I began to break down a second time. It happens, was no shame in it. I often wonder how others would react, if for nearly 6 years, they had to deal with as much physically enduring ordeals as I have had in my journey. The sad part, is that other than a brief 3 month period in the spring of 2009, I have never had a moment where I wasn't suffering from some level of severe physical distress or pain.

A person can only take so much. It's more surprising, that I am not bitter or angry, that I don't lash out at my friends or family, I just keep finding ways to suck it in, and to push to the next day.

This evening, I fixed cheese raviolis (frozen) and a red sauce, and green beans with almonds. But I knew I could never get that into me. I was feeling very nauseated, even though I hadn't eaten a bite all day.
I sat down, fixed a plate (minus the sauce), and took a couple of bites, and knew instantly that it would make me sick.

So I stopped eating, went and fixed a bowl of Cream of Wheat. Got that down without feeling sick, but within 30 minutes of eating, I am sitting here with moderate stomach cramps. That's happened the last two times I have eaten the Cream of Wheat. Whatever is going on, seems to be worsening, and I did tell that to the doctor today. It's pretty bad when the mildest of foods triggers such a violent reaction.
Now I wished I had never eaten. Have started eating plain old Saltine crackers when my stomach is being touchy. No nutrician in them, but they have a way of calming things.

Tomorrow, will have the x-rays ordered. And see what the blood tests reveal, if anything. So far, all the testing that I have underwent this year, has come up with a big goose egg.

Thanks again, for your prayers and heart felt support. To those that think I am either tough or brave, I am neither. I am just dealing with the cards I have been dealt, plain and simple. What is my alternative? To throw a fit and get mad? Whom would I vent that anger out on? Don't mind me, just talking to myself really.

In the bigger picture of things, I am content with my life thus far, I already get more than I deserve, and while I am happy being alive living my own life, my own way, I am more than ready to move on to the next world, when its my time. I never worry about dying either, its all part of the natural process we all call life. Better to accept it in grace, than to fight it with anger.

David

David,

We haven't spoken before, but I have followed your posts since you were on the CP forum.

I wish I had some new idea to suggest that could turn things around for you, but sadly I don't have any ideas.

But I can continue to do what I've been doing for a long time, and that is to pray for you.

I am praying for all the dots to connect and for the drs to come up w/ the right answers very soon.

I wish you a restful night and a very good tomorrow.

God bless. Alice.

Hi Purgatory, I am just back from seeing Paul at the hospital and I am reading this and it sounds so much what may be happening to Paul too. Its scary to see.... He seems to be slowly getting worse... despite them doing all they can and at the same time insisting that all looks good... I know in my heart, and in my eyes that things aren't good with him...

I had to return to work yesterday as the bills need to be paid somehow. It kills me, but at same time a diversion and I truly love my job so much and the people I work with are great. BUT.... I get crappy calls like today (more on that later).

I have had to advocate and fight for a lot with Paul on this as so much has gone wrong, been missed, overlooked, etc. I feel sometimes maybe I am just being paranoid that they are missing things and its all good and well but then I KNOW that is not the case. I talk to other docs every day, I fill them in, get their input etc. Something is so wrong still but we don't know what.

You see- Paul is just deteriorating before our eyes. Instead of improving he now has severe nausea, his pain is worse and comes on faster and stronger than every before. Through this whole thing he has never had nausea at all, except in the last week- and keeps getting worse..... And his weakness and strength are being sucked right out of him. Even in bad shape right out of ICU he was walking at least 4 times a day all over the hospital, Now he needs a wheelchair to get off the hall he is on. He said yesterday he went downstairs to have a smoke (in the wheelchair mind you), and had to stop at least three times to take a long break just to get back to his room! this same walk he could do with ease several times a day even a week ago.....

He hasn't eaten. They have him on TPN. IV nutrition and have upped his intake (more than double now) to something like over 190 grans of protein a day among the other lipids, vitamins, etc.. yet he gains no weight, gains no strength, its not helping much.

He can't eat much- so far he has had a pudding cup yesterday he said he had to force down. A few days ago he had a few bites of Jello.... Today he ate a pack of Reeses which seemed to me like a HUGE feat- what a victory for something so trivial, eh??

I spoke with the nutritionist late last week about his intake, etc as they assumed he would be eating more now (He says he has to force himself to eat and he gets so nauseated, hates the taste of everything and has diarrhea, too).... Well we discussed the protein drinks. Apparently there are others like Boost that are prescription- ones that are non dairy and suitable for a clear liquid diet, as well as others with a much higher protein content than Boost has and supposedly more tolerable and easier to digest. WE discussed he would need this soon due to the cancer, the healing, the wasting, etc.... But this was before his decline since then.

His decline is strange- his vitals are good save for some high BP readings when his pain and nausea is really bad (he says its nearly constantly intolerable). His labs seem okay- some things are out of range but not by much to be concerned and some expected given condition, meds, etc. would be normal in this case. His infection is clearing with the antibiotics, his wound is healing slowly but as expected. All looks good. EXCEPT his intractable nausea, weakness and fatigue and his pain- all getting worse and worse as the days go by.

I mention all this because it seems to be where you are, or where you were, or where you are heading. Paul still has a lot of pounds to go on his big frame but his face is gaunt. Not to disrespect anyone but the way he can't tolerate foods after a month without and all this surgery and invasion (and still a partial blockage!) I halfheatedly compared him to a person liberated from a concentration camp or starving- they hadn't had food in so long they no longer can digest or tolerate it anymore..... I think now my offhanded remark may be more on the money than I realized at the time.....

The call I got today- the case manager. Telling me that even though I needed to return to work and had, that maybe I want to rethink this decision. She said that Paul may be as good as he is getting and that maybe this is the end, and that things would just go fast from here, and I needed to prepare as it could go very very fast from here on out. I was so shocked I am still processing what she said... I think I didn't understand until reading this thread and your other that was closed that this may be the same thing.....

Seems to me that it starts to snowball and comes to a point where it can't be stopped or to a point of no return. They think Paul may be there.... Not really sure yet but saying I need to be prepared and him and I need to start having some conversations and that maybe in hospital palliative care team (hospice) should be involved... There was more to this conversation but we will have another tomorrow....Not looking forward to it..... I HAVE to work- rent is coming due- my daughter may have to drop out of college because we can't pay the last semester bills which just consist of her taking her semester teaching practicum at a local school.... She already walked the ceremony in May and this is all she needs for her Bachelors (and was beginning her Masters). So yeah, I can't take off any more time as it is unpaid. My job would be secure, but my home and car and everything else wouldn't be.... Its killing me....

But hey, back on track.... Please please please don't wait until this gets to the point of no return. Don't hesitate. Pester for those lab results NOW... as soon as they come back you should have them.... See if they can get you on some of this liquid nutrition high protein stuff that is different than Boost.... Do all you can....

Jeez, I have gone and wrote a novel now. Sorry for all who have stuck through it and for those that it put to sleep, I am glad I could be of help in that, too!

Purgatory- you take care. Fight. Look into this. Talk to me.... I think you can understand what I am saying and how I am feeling as his wife....Let's get through this together- you, Paul and me.... Please?

kukukajoo

kuku,

thanks for your update on Paul. there are similar things going on with the two of us, but it may be for entirely different reasons and circumstances.

have any of the doctors mentioned cachexia (wasting disease)? its a horrible thing to suggest, but even my own PCP is getting suspicious that is what is going on with me. all my eating is forced eating. I am having mild all day long lasting nausea now days, something I am not accustomed to or comfortable dealing with. So I understand that part.

with cachexia, if that is what it is, eating more, even all the protein you mention, in most cases, will not reverse the damage or the weight loss or the general wasting you are witnessing. so I hope and pray that is not the case.

I was nauseated all day, and when I was cooking our dinner tonight, it was making me feel sicker and sicker. I knew I would never be able to stomach what was being prepared. I did take a couple of bites, but immediately told my wife, that this was going to make me sick, so I stopped. I went and fixed my fave comfort food these days, a bowl of Cream of Wheat. I make it with 3 parts water, 1 part almond milk. can't get any milder than that. I forced the single serving into me, and within 30 minutes, started feeling bloated and cramped up. Not severe cramps, but enough to be very nervous and uncomfortable.

Later this evening, ate a single portion of some plain, barely sweeten plain cookies, the brand is belvita. they are mild, and I seem to tolerate them at times. also, I have been eating a few regular saltine crackers, no many calories there, and not really any nutrition, but, they do have a way of soothing some of the nausea. Perhaps Paul could nibble on a few crackers like that to help.

so for today, I only ate a total of about 420 calories, and virtually no protein. I am having a lot of trouble with meat in general. I do better if I eat an egg or two, cooked in Pam spray, not butter. I can usually tolerate a couple of eggs mixed with a pack of instant grits.

I realize that is so few calories, but it was the best I could do. I have little tolerance with either the regular boost or ensure products, I didn't know there were higher level ones out there, will ask my doctor about that when I speak to him.

So far, my energy level is not really any different with the weight loss, well, perhaps a little weaker, but my chronic fatigue has worsened considerably. I am always tired, and sleep is as elusive as ever for me, 4-5 hours of broken sleep is the best I can hope for, and with making taking 2 types of prescription sleep aids to even get that much. How is Paul doing in the sleep department?

I feel you are doing all you can for your husband, and I know how terrible and heartbreaking it must be for you to see this downward spiral he is on. My wife is a nurse, and works among the elderly and dying every day of the week, trust me, she's done a pretty good job of not falling to pieces watching my own spiral downward. Her frustration, is that with all her knowledge and training , there is nothing she can actually do to help me.

You being Paul's best advocate is wonderful, though I am sure it alone is zapping all your mental and emotional strength to do so. My hat is off to you for never giving up. I personally don't believe in giving up. I will continue to struggle forward, one day at the time, and do the best I can each day. Self preservation is a mighty strong force if one sets his mind on it.

I find it equally important to keep my mind fit every day, as it helps me to cope with all I am dealing with. I refuse to let the cancer or these medical problems get me down, I am still the same me (for good or for bad, depending on whom you ask, lol), and I will not let my medical condition dictate the real me.

Please never give up hope with Paul, still possible that something could still change or delay the outcome, you never know what might pop up, or if some providential happening changes his condition for the good. I hope his spirits are holding up, despite what he is going through, that's real important in his condition.

If you ever want to talk more in depth, or in privacy, please e-mail me, and I will be happy to exchange phone numbers with you. I am a little hard to reach by phone (ask anyone that knows me, lol), but I wouldn't mind a bit, if you think it would be useful to you and/or Paul.

As far as I am concerned, I will be thinking positive thoughts for you both, and hope and pray that he has better days ahead, despite what appears to be the writing on the wall. Nothing is over, until its over.

I trust you can get some decent sleep, so your mind will be fresh in the morning.

My very best to both of you,

David

Dear Mr. Purgatory,

I am truly sorry to hear about your condition. You and everyone else on this forum remind me what a horrible beast we are all dealing with, and how there can be so many twists and turns as we fight and hope that we will either be cured or outlive this thing. I am not a religious person but I find myself praying more and more each day. And I pray for your and your wife that you will overcome this and that you find peace, joy and tranquility.

Robert

Good Afternoon David

I read you update in the wee hours of the morning. You and Paul have been on my mind all day long.Everyone here at HW is concerned and pulling for you both. Many have said they are praying for you which is wonderful. As we all know, everyone that is dealing with PC is always concerned for the condition of their bones. You have stated that your's are pretty much sticking out because you have no fat left. This verse is my prayer for you and Paul today and everyday: 11 And the Lord shall guide thee continually, and satisfy thy soul in drought, and make fat thy bones; and thou shalt be like a watered garden, and like a spring of water whose waters fail not.

David you have been like a spring of fresh water to many who travel here. I pray that your bones will be made FAT!

David in Texas

compiler said...


... then something like HT could reverse much of this for quite awhile.

Are you kidding? At this point his body could not withstand the rigors of advanced treatment. No way would he pass the blood tests. I agree with his doctors approaches of watchful waiting, WW.

Well, Jack, what if this is advanced PC?

Tell David I wish him good luck, as we continue with his pretend/ignore regarding my posts!

Mel

Thank you, Moon, and for Don's sentiments also. There was no rhyme or reason why this drastic weight loss began out of the clear blue, that's for sure, and I am still hopeful, that something will be found, and a remedy offered, before I reach the point of no return.

If it is truly cachexia, its pretty scary, because once it takes hold deeply, its often not reversible. Hoping that isn't the case for me.

David

David, you are in my prayers and my thoughts. Most of us are always trying not to gain weight and you are trying not to lose.

David,

Always thinking and praying for you....

Refresh my memory...you've had a recent endoscopy and colonoscopy correct? And they showed?

Jerry

Words fail for this situation, but prayers have been sent. Wish you appetite, strength, rest and peace of mind.

Robert