I have been delinquent over the past few weeks. It hasn’t been for lack of interest, but rather, well, I’m not sure. We made the anniversary of the diagnosis of stage 4 bladder cancer, and with that recognition we moved … Continue reading
Last December Terry’s niece, Kaci, got married down in Florida. We had tickets to fly down and desperately needed the escape. The wedding was occurring just weeks after his diagnosis of stage 4 bladder cancer, and we needed to have … Continue reading
We’ve dealt with Terry’s health issues more years out of our marriage than not. We’ve faced life threatening events, scary diagnoses, and disability. It’s been difficult and life altering, and I know the day is coming when I tell our … Continue reading
Now that summer is ending we’re heading into a busy period of medical appointments for Terry. When it’s all said and done I believe the month will simply be a blur in passing as we move from one specialist to the other.
He saw the local surgeon last week about the abdominal hernia. He confirmed my suspicions that it was his intestine dropping into the weakened area of his lower abdomen. Terry had been reading some forums that indicated hernias were not uncommon after abdominal surgery. He had it diagnosed several years ago, and while it hadn’t been problematic then since the surgery it had become painful and extremely swollen. We had even ordered a special hernia support belt for him to wear. The surgeon wanted to fix it as soon as possible, but knew he had other diagnostics that were already scheduled. We’ve now added to the appointments he already had, so once the appointments are completed he will have an outpatient surgery to repair the hernia.
Tomorrow he has labs and scans and appointments with the doctors who did the chemotherapy and the surgery for the stage 4 bladder cancer. He still hasn’t gained weight back so I’m sure they’ll ask about that. I’ll be anxious to hear what they have to say. I’m hoping they’ll have good news. Good news would be greatly appreciated!!
The following Wednesday we’ll head to the main hospital. He’ll go through admitting and then get an injection. It’s called a thyroglobulen stimulating hormone. He’ll have this shot and then go back the next day and repeat it. The day after the second shot he will have labs and a radioactive dosing that he will swallow. Three days later I’ll take him back one more time and they’ll do another scan trying to see if there are any thyroid cells still showing up in his system. He should have no thyroid cells since they removed the thyroid due to cancer. If there are stray cells showing up, they may be what’s forming the mass that they’ve found in his throat. We’ve waited several months for approval to do this test, and had I not called again he might still be waiting. We need to know what he’s dealing with right now.
Once all of those are done and finished, he’ll have surgery to repair the hernia. By that point the month of August should be just a reminder that it’s almost September. I know it’s no fun for him to have to go through all of the diagnostics, but it’s no fun for me knowing what he’s doing, and why he’s doing it. I wish for both of us that he could get just a small break and heal and improve his health before having to deal with more problems. Or better yet, it would be nice to not have any problems for a while!
Enjoy your August…I know there’s fun to be had out there somewhere!
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It seems as though Terry may have plateaued with getting any healthier post surgery for stage 4 bladder cancer. It’s been more than four months now, and there just don’t seem to be any changes in his physical condition. No … Continue reading
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In response to today’s ruling by the US Supreme Court regarding the constitutionality of the Affordable Care Act, I am posting the same blog on both my medical/health website: themedicalmysterytour.com and my political website: progressiveviewfromthemiddle.com. Today’s ruling encompasses components of … Continue reading
When Terry met with his endocrinologist earlier this month she ordered a sonogram to look at his throat where the thyroid was located before it was removed due to thyroid cancer two years ago. We really felt it was just a routine follow up that was not unexpected due to the passing time frame. What wasn’t routine or expected was the news we received as a result.
At the time of the thyroid cancer in early 2010, the mass that was discovered on his left adrenal gland was eventually diagnosed as a pheochromocytoma. This pheo is typically diagnosed in conjunction with high blood pressure, which as a cardiac patient with significantly damaged heart tissue, Terry does not have. He does have a history of a pheo now, so I suspect they will monitor that in his future. It turns out they’re monitoring it now, and the lab specimen came back with an abnormal reading. She wants him to do the 24 hour urine collection specimen again, which is much more reliable as an indicator. I hope she is coordinating that with the doctors he will see in May for the bladder cancer.
Even more unexpected, and the real sucker punch to the news was that they discovered a nodule on his lymph nodes when they did a sonogram of his throat. That cancer had not been a fast growing cancer, and had not been present in the lymph nodes when the thyroid was removed. Now that he’s had the subsequent diagnosis of bladder cancer I don’t suppose we can assume it’s thyroid cancer, if it turns out to be another malignancy. We don’t know anything for sure at this point, but we’re both pretty sure there shouldn’t be anything there.
On May 11 he has an x-ray, a scan, labs, and two doctor appointments. I’ll contact the endocrinologist’s office this week to see if there’s anything that can be coordinated with them that can be done at that time. We won’t know anything for sure about anything until well after that, so it will be another waiting game. Those are never any fun, and when you weren’t expecting to play the game to begin with, it seems even longer than it is.
Terry’s expression when I conveyed the information from the phone call said he was not happy with the news. I worry about him if this is the new trend for us…if he can’t get ahead with one medical issue before a repeat medical issue starts demanding attention again, it’s going to be an even tougher battle. I’m trying not to get ahead of the situation, but we were not anticipating the potential for bad news. We realize and acknowledge that he will have to go through lots of diagnostic testing in the future to ensure nothing bad is making a comeback, but given the type of thyroid cancer it was we didn’t expect a recurrence. And we don’t know that it is. We just know how it should be. It should be nodule free. We’ll soon see.
As Terry moves closer to the two month post surgery date from his surgery for bladder cancer, he is going to start making the rounds of the other “gists” who treat him. He begins with the endocrinologist tomorrow, and then visits the cardiologist two days after that. It should be interesting to hear their take on what’s transpired with him since he last saw each of them.
An interesting aspect to these doctors he will see this week is they are both women. I know we shouldn’t be making generalizations, but those two women are the two doctors he sees on a regular basis who actually listen to him and look at total body involvement. One of our complaints is that the specialists specialize, and as he experienced at the last urology appointment when they learned he was having trouble sleeping and needed a sleep aide, they don’t want to deal with anything outside their specialty. I may be a bit biased where he’s concerned, but it seems to me a patient who has been through all he’s been through would recover better if his body actually got recuperative rest. When you sleep in two hour blocks at night, you are not getting the kind of rest your body needs even if you haven’t been through the stress of cancer, chemo, and surgery.
He has seen the cardiologist, as he could not go through the surgery without cardiology approval, but he’s not seen the endocrinologist. He is taking very few medications right now, so we’re both hopeful it remains that way. Without an adrenal gland and his thyroid his energy is definitely still an issue. I have to believe if he got adequate sleep his energy levels would benefit as well as his overall healing.
His weight continues to be a concern, and that is one area that the endocrinologist may be able to address. If he’s currently “amped” up too much on the synthetic thyroid he isn’t going to be able to keep weight on, or sleep well. The lab will likely be based on labs drawn a couple of months ago when he was hospitalized, so it’s hard to know whether time would make much of a difference looking at those levels. He may have to do that again to get accurate information.
I think she will be very surprised when she sees him. The cardiologist saw him just prior to the surgery, but the endocrinologist has not seen him at all since the diagnosis of bladder cancer. Even though his beard and hair have started growing back in, his face is still very gaunt, and the weight loss shows on him.
In some ways, starting to attend appointments with the other doctors in his life is a symbol of things getting better. The more he’s getting around, the less we are reminded of the urgency that had been associated with the stage 4 bladder cancer. It generated an intensity that we’re both glad to be rid of for now. Hopefully going to see the other specialists he works with, those other “gists” who take care of him, will begin the path to our new normal, whatever that may be.
Terry had the last of his pre-operative requirements completed today. It was interesting to find he had the exact same person do his admission paperwork, AND the same nurse doing the medical history. In addition, the anesthesiologist mentioned that the guy who did his anesthesia during his last surgery was talking about Terry at a staff discussion. We know that a pheochromocytoma is very rare, and that is confirmed each time we inform a new medical professional about his medical history. Now that this particular anesthesiologist worked on Terry, and actually altered the way they were going to do the surgery, he has experience he can discuss. It was just interesting to find that even after two years, with as many patients as they HAVE to see day after day, they remembered us. I’m sure that’s in no small part to the fact that we try to have a positive attitude and interact with people on a personal level.
During our conversation the anesthesiologist joked with Terry that I was feisty. I told him we had decided the fact that I speak up for him is in good measure why he is still here after all he’s been through. He laughed and said the devil didn’t want to deal with me so he was letting me keep Terry a little longer. I think I liked that comparison. But I think in this case the cancer is the devil, and I am definitely trying to get Terry as far away from that particular devil as I can. I will do all I can to fight that fight and see Terry come through it all one more time.
It’s hard not to be nervous about what is coming for Terry. While he has a tremendous will to live, his body is getting battled out. He has not bounced back the way we both had hoped he would from the chemotherapy. I keep reminding him that they told us how aggressive they treated him, and how harsh those drugs really are to your body. I want him to always feel like he’s doing what he can to beat this, even when he’s feeling physically spent. He’s been through so much already, and has fought hard each time it’s been required. I tell him when he’s through he’ll be the latest Six Million Dollar Man. He just won’t be in quite the same shape as the other one!
With surgery one week from today on the 22nd, the countdown to no cancer has officially begun. We’re ready for him to be cancer free, and for his head to be covered in hair again, and for his body to adapt to the newest changes the surgical procedure will bring. It’s one more adventure for us to see through, so we can come out on the other side of the experience in better shape than we went into it.
It’s time to stop talking about it, and start doing it! This will be the last Thursday he has a bladder. Tomorrow will be the last Friday. Here’s hoping the day gets here quickly when we look back on this as one more story we can tell about how Terry won the battle one more time. That’s not asking too much. Lest we forget, cancer sucks…
Terry started another round of chemotherapy today for his bladder cancer. This was the cocktail of 3 chemos which work well together in attacking bladder cancer, and as a result, take the hardest toll on him physically. He learned the hard way after the first treatment that it isn’t how he feels right afterward that is indicative of how he’ll feel later. Unfortunately, the single chemo treatment he also gets on alternate weeks was hard on him as well.
He had been told starting out that due to the aggressive nature of the drugs being used he would lose not only the hair on his head, but on his body as well. Two weeks into chemo and he hadn’t lost a noticeable amount. That all changed this past week when it came out in handfuls. In a 24 hr period he lost almost all of it, with long wispy strands holding on and sticking out. Our daughter, Molly, shaved the rest of it off two nights ago, so it’s a new look for him. As one of the few guys his age who actually had kept his hair, it was a bit of an added insult that he had to shave it off.
I’ve tried to be strong, but couldn’t help from crying when I saw him the morning it was all coming out. It was amazing how quickly losing his hair gave him not only that “cancer” look, but how much it aged him. His beard had been getting grayer and grayer, but his hair had remained a dark, dark blonde for the most part. With the hair gone, and the gray beard holding on he aged 10 years overnight. I know he didn’t but the way he looked did for sure.
He woke up nauseous this morning and it’s hard to tell if it was nervousness for what was coming or the same old thing that still is not identified but is the usual culprit for nausea. Whatever it was, in some measure, had to be attributed to knowing what was coming after having been here before. There’s apprehension that occurs from not knowing what is coming, and there’s apprehension from knowing EXACTLY what is coming. I’m truly not sure which is worse. The unknown experience happens just once, but the known is experienced over and over again.
It feels like there is an exclusive club that we are now members of, and we didn’t even apply. As a result, you can better pick out those who are undergoing treatment, and accept that knitted caps on bald heads happen for a reason. You want to believe your experience will be different, but cancer and chemo care not who you are. They are both designed to destroy, and will go for clean healthy tissue if given half a chance. The gaunt look of a cancer patient appears much quicker than you expect. Now you better understand the experience, and all that it involves. You and your loved ones are now official members of “The C Club”. It would just be nice if it were a club you could decline to join.