Seriously???

Aaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrggggggggggggggggg!!!  Now that I have that off my chest.... 


This is getting more convoluted as the process wears on.  Terry met with the surgeon who is going to do his colonoscopy yesterday, and he put an entirely different spin on this than the oncologist has.  It's becoming more and more difficult to accept what we're told because it keeps changing.  I just want them to know without a doubt what we're dealing with, so we CAN deal with it.


This is what we thought we knew:  Terry has a total of three masses.  One in the prostate, one in the thyroid, and the mass that started it all, in the adrenal gland.  He met with the gastroenterologists last Tuesday, and they talked about the need to focus on the prostate, as the adrenal mass was determined to be non malignant.   When he met with the oncologist two days later, he confirmed that the prostate was the primary concern.  He would be referred to a urologist for follow up with a biopsy.  


So, he met with the surgeon yesterday, and he was VERY enlightening.  From HIS perspective, the immediate issue is the functioning adrenal gland tumor.  While it's not malignant, which is evidently why the oncologist wasn't concerned, it is functioning, and may be overproducing the hormones which may have led to the thyroid mass.  Lab results from blood work they did showed elevated levels of multiple hormones, so there is no question to the surgeon that the adrenal mass is functional.  I'm not sure why the gastroenterologists and the oncologists didn't catch it, but I'm thankful he did.  He was able to tie things together as no one else has.  The scary part, but he didn't seem to be concerned about, is the fact that Terry may legitimately have 3 different issues going on.


He believes the prostate cancer and the thyroid cancers are not related.  Meaning he does not believe the thyroid metastasized from the prostate, but is a separate cancer from the prostate.  I'm not sure at this point that I find it more reassuring than not that he might have multiple cancers at the same time, as well as a malfunctioning adrenal gland.  The ray of hope in all of this is that where the cancers have been located so far, the glands themselves can be removed.  They can remove the prostate, the thyroid, and the adrenal gland.  I would assume that potential and opportunity does not always present itself.  


I want to believe we are moving in the right direction, but can't shake the concern about the pain he's had for so long.  We've had lots of conversations lately, and he understands I do not want what we ultimately find to be a terminal condition for him, further reducing his life span.  But I do feel it's my responsibility as his wife to make sure they haven't missed anything.  Until they tell us they're 100% confident they've located and removed all cancers, and treated anything else that can be to make him feel as comfortable as possible, I'm not willing to back off and breathe any sighs of relief.  Trusting doctors has not worked very well for him in this particular situation, so until we're officially through this situation, I remain on high alert.


This morning was the biopsy on the thyroid.  In 3-5 days he should have results back.  We'll have a better idea then if the local surgeon has figured out what the other doctors and professionals have not.  All we want is answers and treatment.  That's not asking for much.  Is it??

Can We Change Our Order, Please?

After literally years of not knowing what was wrong with Terry, we may finally be on to something.  The scary part is now that we are learning, the inclination is to want to go back to the days of ignorance and frustration when we were clueless.  


Now, after three weeks of knowing there was a mass in his adrenal gland, we are finally confronted with the "C" word that each family dreads.  Today the use of words like "inconsistencies" and "mass" and "abnormality" were replaced with the word "cancer."  And even though he had willingly and openly been talking with me about the possibilities of what he was facing, when he met the reality of that possibility, it was obvious he had hoped the news would be different.  He became very quiet once we left, and trying to force meaningless chit chat just for the sake of doing it seemed wrong.  I know how far away in thought I'd have been, and knew it was a lot for him to process.  


We still don't know a lot, but this is what we know.  It is pretty certain there is prostate cancer due to enlargement, increased PSA reading, PET scan result, and physical examination.  There is also a nodule on the right lobe of the thyroid that showed metabolic activity during the PET scan.  He needs to have biopsies of both locations.  The mass in the adrenal gland that started all of this did not show activity during the PET scan, and even if it had, it is still too small for them to deal with at this stage.  It is less than 2cm, and may have to get closer to 4 for action.  


Today was the beginning of figuring out what is going on and what he needs.  But unless things change, he won't see the urologist who will do the biopsy, until May 10.   Not that he will have the biopsy on May 10.  That's when he sees the doctor who will DO the biopsy.  Even though the oncologist explained the procedure today, and why he needs to have the biopsy and not just rely on the other markers was covered as well, he still has to have a conversation with the other doctor.  It's hard not to see this as more delay, when there has been so much delay already in his diagnosis.


The purpose of the biopsies are to show the stage and aggressiveness of the disease.  We were told prostate cancer metastasizes FROM not TO the prostate, so they need to make sure this is the primary location.  He is still on track to have a colonoscopy, so hopefully they aren't going to find that it's gone anywhere else.


While I've always believed information is power, I may have to stop doing research and looking into what this all means until we have more complete information.  I still maintain I'd rather be prepared for the worst, and hear the better news, than the other way around, but I'm reading too much and learning too much and it's a bit overwhelming.  And scary....I need to walk the tightrope of trying to understand what we're in for without falling the long fall of "what if?"...that fall is too, too far down....and we're just starting to inch ourselves out onto that rope.  We have to be steady for now.  It's hard to believe we wanted to know all of this not so long ago....

Wake Me When It's Over

Today is the day we've both been anticipating and dreading. Today is the day for the PET scan. While we know we won't learn anything before we leave, we do recognize this is the step we need to take to know what we're dealing with and what options are available.

And I realize I use the word "we" a little lightly. I'm not the one going through the tests and dealing with a potentially alarming diagnosis. But I am with him as he goes through all of this, and know that it will impact me as well. I do think I'm mentally prepared for whatever comes our way. Since his heart attack 10 years ago, I've lived with the reality that he may not be here to grow old with me. This is not a new thought process. But everyone keeps telling me to think positively....and while I try not to worry unnecessarily about things, I do try to think in realistic terms of what is happening. I'm not sure I know or appreciate the value of telling myself nothing's wrong and he'll be fine only to find out otherwise. My own personal philosophy is prepare for the worst and hope for the best. I'd much rather prepare to be told what we don't want to hear and then not hear it, than bury my head in the sand and learn things were much worse than expected. But that's just me.....

So, for now, we'll spend the next week trying to act as though nothing is happening, until we're told otherwise. That week will give me the time to figure out in my own head how I'm feeling about what's going on. I know I need to be ready to deal, whatever we're told....part of that will be figuring out what I'll need to do to make things as easy and positive for Terry as I can. Even if the news we get is better than expected, there's STILL something going on with him that needs to be diagnosed and fixed. The challenge will be keeping him from getting too down from continuing to deal with this. When you've felt crummy as long as Terry has, the last thing you want to hear is that yet one more time, they don't know what's happening to him. Even bad news at this point would be an answer. This not knowing is not working.....

Thanks For Nothing....

How does it happen that you think you're prepared for something, but when the real event happens, it turns out you really didn't have a clue?? I thought we were prepared to receive bad news, but the bad news we were expecting turned out to be potentially better news than we received.

We were both prepared, I think, to confirm that the mass in his adrenal gland was malignant. What we weren't prepared for, and I'm not sure we've processed yet, is that the malignancy may have metastasized from someplace else. How does that happen when someone is in the medical condition he's in, and going to different doctors all the time? It's becoming eerily reminiscent of what I experienced with both of my dads. One had Parkinson's and was under medical care, and one had emphysema, and was under medical care. My stepdad died less than 5 months after his diagnosis of cancer that had metastasized to his brain and spinal column, and my dad died less than 7 months after his diagnosis of lung cancer.

I'm not saying I don't expect Terry to make it through this year with whatever they find. But I am saying I'm extremely distressed to have been as demanding as I was about what he needed, only to be denied, and now possibly validated that something major was happening. There are times you want to be right, and times you hope you're not right. I didn't want to learn that he may have cancer in multiple places in his body. I wanted them to determine without a doubt that nothing was going on. They didn't, and there is.

But to learn that it may have originated in the bladder or prostate was a cruel blow. As far as we knew, there were no problems with EITHER of those areas, and it turns out one those may be the site of origin for the cancer. And there's a chance it might not be either of those sites, which means there could be more bad news to come. For now, I'm going to keep reminding myself that at least they may be on to something, and there is hope.

It has reinforced my understanding of the fact that despite the fact that doctors are the professionals, they aren't the one living with whatever medical condition it is that makes one seek out medical care. When they disregard the patient, and the patient's loved ones, they do a real disservice to those patients. If they had quit reverting back to their protocols and looked at the situation through different eyes, or our eyes, they might have seen something that might have made a difference.

We can't change what's happened. We need to look ahead and plan for the future, whatever it may bring. We've worked too hard to get there.

Be Careful What You Wish For

Tomorrow (today) is the appointment with the oncologist. No matter what we're told, it will be a double edged sword. If the mass is malignant, at least we finally know what we're doing with. That's bad, but it's good. If it's benign, then we're back to square one with not knowing what the problem is. That's good, but it's bad. It's really hard to know what I should want to be the outcome.

I do know the pain he's feeling is happening more often, and at times with more intensity. The nausea has been diminished, and he hasn't had a full blown vomiting episode for three months now. We've tried to make the point that even though it's been 5 1/2 years since this started, the vomiting is not our primary concern right now. The pain is. It would be nice if someone was looking at the big picture, rather than than piecing him out by specialty.

It's been a sleepless week, and I think it's knowing about this appointment that's doing it. I just want it to be over so we don't have to wait any longer. But knowing either answer does not bring relief and comfort does not bring me much relief or comfort at the moment. We'll get through it. We always do.