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.

How To Be Heard...Or Die Trying

I've had some time to digest the news of last week that there is a mass in Terry's adrenal gland. The more I think about it and chew it over and over in my head the more frustrated I am with the conclusion. There's a good chance this is malignant, and we'll find out more after meeting with the oncologist on April 8.

The frustration stems not from knowing he may have a malignancy, but rather from the perspective that whatever is there might have been discovered sooner. Terry's family history includes his father's death from colon cancer, which Terry tells me started in the abdominal cavity and encroached into the colon, metastasizing there. I've maintained for some time that he needed a scan of some type to determine whether there was something there. Evidently, you must follow a series of other diagnostics and tests to rule other things out before you can justify doing a scan; specifically, a PET scan which can determine with a high probability whether masses are malignant or not. Terry was subjected to the same type of tests repeated at different times that never revealed anything.

I have to wonder what happens to those who don't have advocates looking out for them and attempting to navigate the system on their behalf. Are they just routed through standard protocols until at times it is too late? The attending physician at KU Med in the Gastroenterology Dept last week looked at me as though I had a third eye when I was questioning why he wanted to subject Terry to repetitive tests that kept coming back negative. They did do a CT scan on Friday to rule out a brain tumor, so I suppose that's thinking outside the box where recurrent vomiting and abdominal pain are concerned.

I'm not trying to borrow trouble and worry about whether it is or isn't malignant. But if it is and he has to endure surgery, chemo, and radiation as research online suggests, I will always wonder whether it might have all been avoided. It might not be that he could have avoided it completely, but maybe it might have been discovered sooner than it was, with treatment minimized as a result. Had he not been in pain at the time of Internal Medicine Dept appointment and had an empty stomach because of the discomfort, we still might not know there was a mass.

For now I'll focus on the fact that we know something's there, and on April 8 we'll have a better idea of what we'll be dealing with to come. Until then, I'll try not to freak every time he's telling me about a new pain or discomfort. I'll remind myself to keep demanding of his doctors what we think he needs. They know medicine, but I know Terry and what he's going through. I'll keep working to be heard, and in the process protect Terry from unnecessary tests. It's all I can do to keep the focus on him.

We May Be On To Something

After beginning with the Internal Medicine Dept at KU Med Center, Terry had his first appointment with the gastroenterology side of things. Once again, we met with a third year intern, and again, he was interested and inquisitive and for the first time we felt heard.

He did have some ideas to pursue, and this is really the first time we've had any type of hypothesis about what's happening. Results of the CT Scan he had at the last appointment at KU Med showed a mass in the adrenal gland. They aren't sure what it is, and will be referring him on to possibly an endocrinologist. They will also do a CT Scan of his head to look at his sinuses, but also to look for the potential of a brain tumor. On the bright side, the doctor did say if there is a tumor, the likelihood is that it is benign. If it were malignant with as long as Terry's had the vomiting problem, he would be dead by now. Yay.....

Additionally, they will be checking for steroid levels, specifically the hormone cortisol. There will also be a four hour stomach dumping test, and a blood test which would indicate if it is vagel nerve related. The intern spoke of potential causes for the vomiting, and concluded his conversation with us by talking about cyclical vomiting, which is not diagnosed as to the cause. They do all the tests to rule out potential causes, and when left with nothing, term it cyclical vomiting.

After feeling optimistic for the first time in a long time that we might actually be making some headway, the supervising physician began by talking about cyclical vomiting. Terry had stressed with the intern that it was primarily pain now that was the issue, and not so much the nausea and vomiting. To begin the discussion with us by talking about having a condition with an undetermined cause felt like he was following a blueprint of diagnostic tests that they all follow.

I could feel myself becoming increasingly frustrated and irritated by this physician. We explained that much of what he was recommending, Terry had already been put through. I told him we needed to do something different if we were going to figure this out. So, to a certain degree, what I was trying to avoid with repetitive testing that was always negative was what he was going to experience. If it gives us the answers we need, it will be worth it in the end, but I can tell I'm losing patience with not knowing why he goes through this. The increased pain and disclosure that they've found a mass in his adrenal gland is making me think that this may be something that should have been, and could have been found much sooner.

I'm hopeful that's not the case and we're finally on track to find out the cause of his pain and suffering. I know we're both weary of living like this.