And So the Cancer Hath Summoned
It’s amazing at what a difference a day makes. Originally Terry’s surgery was scheduled for Wednesday, Feb. 22, but now has been moved up a day to the 21st. In reality a day less to worry and fret is a good thing. But I know I have things I wanted to get done, and that won’t be happening now.
Watching Terry this afternoon I think it’s a good idea that he has one less day to worry. He has paced and walked and paced some more around the house. It was a rainy drippy day, so going outside wasn’t an option. I really hope he gets some good rest tonight, as he’s going to need it.
We had a gathering this weekend, and it was fun to have friends and family around to take our minds off the impending surgery. But I can’t really say we didn’t think about it, because we were talking to one person or another about it all evening. Everyone is concerned, and their support is indescribable.
I made a request of friends to light a candle on Terry’s behalf tonight. Each time they see that light I want them to envision a healing warmth surrounding him and protecting him from harm. It’s a simple thing for people to do, but it provides an easy answer when asked what they can do to help. And it really does help.
The knowledge that we have friends and family members giving us their support through prayer, positive energy, and good thoughts makes such a difference. It helps reinforce that we are not alone in this. I’m more concerned about this surgery than I have been for other medical events he’s endured. A diagnosis of stage 4 cancer is never good, but their claims of confidence it hasn’t spread don’t comfort me and won’t until I hear from them after surgery that they did in fact get it all. Had it not gotten to this point I might have more confidence. For now I am sad and I am mad that it did.
The challenge tonight will be getting sleep when I know what we’re getting up to do. I can only hope that this is the last time we’ll have trouble getting to sleep because of an impending and invasive procedure to save his life. We’ve been here too many times already. It’s time to start a new trend and have nothing medical happen for a while. Would we know what to do? Probably not, but I’m ready to find out.
So keep a good thought and a prayer close for him. He’s got a really big hill to get over before it starts getting easier. Until I post updates, I want to articulate my thanks one more time for the support. We’re going to do all we can not to need it anymore!
The Countdown to No Cancer
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…
Where We Go From Here
Haven’t posted for a while, and it seems like there is much happening. The appointment with the surgeon was a little discouraging. For me, anyway. We went in to the appointment thinking Terry had two different, yet potential options. After the conversation with the surgeon it seems clear he really has only one choice, and it’s the one he didn’t want to have to consider.
His dad died of cancer that Terry tells me was colon cancer, but encroached into the colon, as opposed to starting inside. He felt his dad never fully recovered from the surgery to remove his colon and once he had an ostomy bag to deal with it began a slow decline, ending with his death. I’ve heard from Terry prior to his bladder cancer diagnosis that after witnessing what his dad went through he never wanted to have to deal with an ostomy bag. The description of both procedures indicated having the bag is going to be the better option for him.
Once they remove the bladder, prostate, and lymph tissue, they will remove a section of small intestine. If he was going to not have a bag, that tissue would be used to create an artificial bladder, or as they refer to it, a neo-bladder. The downside of that option is that due to the tissue used to function as a reservoir, there is no sensation of urgency, and he would have to empty it every two hours. That means even at night he would have to wake up, get up, and empty the neo-bladder. Not an attractive option for someone who has enough difficulty sleeping as it is.
A second issue is that the tissue from the intestine that would be used for the neo-bladder develops mucus. That mucus could plug up his reservoir, and he would have to perform a self catheterization and he is NOT interested in doing that. For me the bigger issue is the two hour drain schedule for the other option. He will never get his strength back if he cannot rest. Sleeping is a difficult enough proposition for him, so he truly does not need any additional difficulties there by being forced to get up every two hours every day. His surgeon says he will be able to swim and do activities he normally would be able to do with the ostomy.
His chemotherapy treatments are finished. He should have had the last one last week, but once again could not due to blood levels. He was low on several counts, but the white cell count was virtually non-existent. He was at extremely high risk to get an infection, and had to stay away from people and away from public spaces as a result. The benefit to that is it will give him an additional week, and minus a treatment, to start getting his strength back for surgery. It’s going to be a hard surgery on him, and the better shape he’s in when he starts will hopefully mean better shape when he’s finished.
His date for surgery has been set for February 22, which will be here before we know it. Neither of us are looking forward to it, but we are looking forward to it being over. And I’m looking forward to getting the Terry I know back. Treatment has been really tough on him so far, which necessitated missing 2 of his scheduled 8 treatments. He has no color, and his bald head make him look so much older that it’s hard to remember it was just 3 months ago when he still looked like himself. He won’t be the same when it’s all over, but at least he’ll look like himself again. If nothing else, I think it will help us to move on. When he looks like himself he won’t look like he does while he’s sick. It may just be a visual trick, but I’ll take whatever we can get. I just want him here, and healthier. That’s all.
Preparing To Have The Conversation
We meet with the surgeon who will do Terry’s surgery to remove his bladder, prostate, and lymph tissue resulting from his stage 4 bladder cancer diagnosis in two days. The list of questions we have for him is growing by the day, and I’m hopeful we don’t forget anything we need to know. Sadly, experience has taught us we don’t know what we need to know until we NEED to know, and that can be too late at times.
What we do know is the surgery he will have is major. Terry has been through open heart surgery, removal of an adrenal gland and his thyroid, and has had 3 different pacemaker/defibrillators implanted. He really thought he’d been through the worst, but the surgeon indicated this is going to be unbelievably bad. In addition to what they’re removing, they’re going to take a section of small intestine and resection and reconfigure it to create a reservoir for urine which will be drained out through a tube. It’s hard to really know what kind of time line we’ll be looking at for his recovery, but without a doubt it’s going to be a long one.
For me the real question is after he goes through all of this, what is his quality of life? If the expectation is that once he recovers he really will have strength and mobility, then I’m all for it. If they cannot guarantee that, I think we need to have more information. I’m not saying if he can’t fully recover then he shouldn’t have the surgery. I would never presume to say additional health limitations would be a reason for not having the surgery. Not at all, and quite the contrary. But I do know what Terry’s been through over the past 12 years of health issues, and to give up even more in strength and his ability to actually enjoy the activities he engages in is a major consideration. For both of us.
I’m trying to put some subtle but consistent pressure on him to think of all the questions he may have, because he is the one that matters. It’s easy for me to look at this and how it will impact me, but I’m not the one going through the physical demands of a physically demanding surgery. Terry is, but he really needs to go into this with full disclosure of what it’s going to mean to, and for him. It’s so disappointing to try to put a positive spin on a situation we both thought we had a handle on, only to later discover we were a bit naive. The treatments he’s been through to get ready to have this future surgery have taken a toll on him. It’s hard to believe that with as crappy as he feels now, at some point in the near future we’re going to look back and marvel at how good he must have felt in comparison to how he feels then.
For now, we compile the list of questions, and hope that we’ve covered the bases we need to when we meet with the surgeon. And hope what he tells us gives us pause to be grateful. We could really use some of that about now.
All the Things You Don’t Know To Worry About
Four days ago, Terry passed out cold on the kitchen floor, walking through after a hot bath. He didn’t know he was going down, and didn’t realize he was down until he came to, thinking he had gone to lie down in bed. When he gained consciousness and I asked him how he was feeling, he told me his foot hurt. When I checked it out, I could see it was red, with the beginning on a knot forming on the top of his foot. I assumed he hit it on the door frame going down, and was actually more worried about the fact he had passed out unexpectedly.
He did lie down for a short time, and when I checked his foot later, I was stunned by what I saw. The swelling was immense, and the discoloration had already begun.
While the damage was obvious, and there was no doubt he was in pain, the real issue for me was the knowledge that the chemo has forced his platelet count so low that his ability to clot is impaired. I did not want the swelling to continue indicating he needed emergency care. It’s a fine line as a non-medical professional trying to make that determination when his condition warrants emergency attention or not. I’m not sure I will be able to handle it if I ever make the call incorrectly. So far, so good…
I encouraged all the things that should be done, such as ice, elevation, and keeping it wrapped to avoid additional swelling. By the next day, the discoloration had become more pronounced, and had even spread to the underneath of his foot. I decided maintaining photographs to show his oncologist would be a good idea since he didn’t go to the ER.
My mom had kept some of the medical equipment obtained for my dad when he was ill, such as a walker and a cane. We borrowed both, but Terry found using the cane was a better option than wrangling the walker. I was trying to keep him off his foot as much as possible, but that’s also counterproductive to the effects of chemo, which are often diminished if he can get up and move around some. It’s one step forward, and two steps back when he’s already in a compromised health condition, and then suffers an injury.
Each day seemed to bring less swelling, but more color. The fact that the swelling was under control made me believe his system was responding appropriately, and clotting as it should to respond to an injury such as the one he had sustained. He may have kicked the door frame as he went through it, but I wondered if he bent it in some awkward manner when he went down.
By the fourth day the color was getting extreme under the foot. The purple is wrapping around his ankle, and gathering on the arch. I must admit I’m beginning to develop a morbid curiosity about how it’s going to continue to change. The body is an amazing thing.
I know passing out may be an unintended consequence of the effects of the aggressive chemotherapy for stage 4 bladder cancer he is undergoing, but there seem to be more considerations to his health than we initially understood. We expected the nausea, and to feel run down, but didn’t know internal injuries or bodily injuries that cause bleeding could be life threatening. If his foot looks like this after hitting a door frame, what would happen to him if we had an accident on the way to treatment? It adds additional pressure to an already pressure filled experience to try to protect him from any and all potential threats. All I can do is all I can do. And hope that it’s enough.
Hair Today, Dome Tomorrow
The ravages of chemotherapy are known. Extreme nausea, lack of energy, risk of infection, and an overall sense of feeling ill are all known side effects of receiving chemo. The classic, tell tale sign above all others, though, is hair loss. Not a thinning, but all but complete loss of hair on the head, and often on the body as well. It’s visible evidence of the destructive nature of the “cure” cancer patients are subjected to in the name of getting well.
Terry at the start of chemo
Terry’s hair loss was sudden when it started. It began early in December, so at a time when he was already feeling cold and run down with thinning blood, his head was exposed as it hasn’t been since he was first born. He noticed immediately the sense of heat loss and how quickly he felt colder as a result. He has already received a couple of new hats to wear, and I suspect they will be popular Christmas gifts for him.
Two and a half weeks after starting chemo; starting hair loss
The hair loss is still hard for me to accept, but the loss of gray hair on his face has in some ways made him look younger. While we are all hopeful he has other holidays ahead of him, I don’t want to take any chances and not have pictures of him on our daughter’s recent birthday, or for Christmas cards, or at Christmas. I tend to over document our lives with pictures, because the digital age has made it so easy. I wouldn’t wish his and our experience on anyone, but because we are going through it, I will chronicle it with words and pictures. He hasn’t lost as much body hair as expected, but the hair loss on his head was dramatic.
The result of chemotherapy
He is halfway through chemo for stage 4 bladder cancer now, and will have two scans done on Friday looking at whether there is evidence of positive response to the chemo. If there is, he’s on track and we’ll start the new year knowing that while it’s been extremely tough on him, in the long run it may be worth it.
Aside from the typical symptoms of receiving chemo, Terry has complained about pain in multiple areas across his body. He claims that in the week after a treatment, the pain works its way down his body, starting at his head and working down to his feet. He’s also complained this week about pain in the area of his kidneys. Naturally, after talking with the urologist and learning that the type of tissue leading to and into the kidney is like that in the bladder, when he’s complaining of pain there post treatment I worry if there is a cause.
We won’t get the results of the scan or lab work until his appointment on Tuesday after Christmas, so for the holiday, the focus will be where it belongs. We will focus on having the kids and the grandkids around and everyone having a fun and memorable time. It’s what we always do, and this year won’t be any different. Terry will just look a little different in the pictures I get of him, but he’ll be here for those pictures. That’s all we can ask for this year.
Going Back For More When You Know What’s Coming…
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.
And the Cancer Taketh Away
This week brought disappointment from a truly selfish standpoint. We had planned to attend Terry’s niece’s wedding down by Miami. Four days of sun and white sands beach seemed like a wonderful recuperative respite for both of us. We planned to go a few days before the wedding and simply lounge by the water, soaking up healing warmth and relaxation. Since Terry had only been through one cycle of chemotherapy, we thought it would be the best opportunity for him to feel well enough to travel. No good deed goes unpunished, however, so rather than writing from the sunny beaches of Florida, I remain planted in Kansas, with the cold predicted to bring snow when I drive to the airport to bring home my mother in law and her daughter when they return. Not quite the scenario we had been hoping for.
We had discussed with Terry’s oncologist the plans to travel. He agreed a happy occasion in a warm location would be beneficial for Terry and how he felt. As a result, he wanted us to have Terry go through some labs and check blood count before we left to ensure Terry was healthy enough to make the trip. We went to the appointment feeling it was more of a formality than a potential barrier. Wrong. His platelet count was low enough there was discussion of hospitalizing him. The doctor was concerned that if he started bleeding for some reason he might not be able to produce a clot to stop that bleeding. That was not a situation Terry needed to be a part of, so the recommendation was to stay home. They wanted him to come back in the next day to check his platelet count again to see whether he had bottomed out or it was still continuing to drop. The return visit verified that it was as low as it would be, so the assumption was it would start to go back up. Hhmmmph. Too late for us. The tickets had been canceled and the family had been contacted we weren’t going to be able to make it.
Hindsight being what it is, always makes it a 20/20 proposition. In hindsight, if the appointment had been on Monday, rather than Tuesday which was the day before we were supposed to leave, the outcome might have been different. But we didn’t go on Monday, so we didn’t go on our trip. Because we didn’t go on our trip he should be able to get extra rest and build his strength up for the next round of chemo starting on Monday. Ultimately that is going to be in his best interests, but it was easy to see how a joyous family occasion in the warmth of Florida in December would have served to make him feel better overall.
His hair has started to fall out in a noticeable way, and the weather is turning colder, so he won’t get out much before his next chemo treatment. While hunkering down at home when it gets cold in Kansas will allow him to rest, the whole experience has made us both painfully aware that this is absolutely as good as he’s going to feel for a while. That was a sobering thought in light of the expectations of traveling for a wedding. As it turns out, Terry was feeling much worse than anticipated, so staying here really was in his best interest.
For both of us, it was a realization of what cancer takes without asking. I can’t say it often enough…. cancer sucks.
The Chemo Fun Begins
Terry has had two chemotherapy treatments so far as a result of his diagnosis of stage 4 bladder cancer. He came out of the first treatment feeling a wee bit cocky, but that has since caught up with him. It was easy to think there wouldn’t be any nausea when he wasn’t having any. It was hard to believe he would feel better once he started getting sick.
Now that he has started getting sick, and has slowly started to lose his hair, I think he’s starting to question what is worse: the disease or the cure. He wasn’t nauseous or feeling complications from the cancer yet, so the treatment has been the tough part. It’s ironic that once he started receiving treatments he started feeling bad. Trust me when I say the irony is not lost on him.
One of the more surprising aspects to this chemo treatment has been just how much it’s sucked his energy levels down. For someone who has lost his thyroid and one adrenal gland already, going through this is bringing his energy down in ways I think has surprised both of us. He has not had the energy to do much of anything since he started chemo. What concerns me, and what I’m sure he’s thinking as well, is that he’s just started, so it’s bound to get worse before it gets better.
We have been getting his picture daily, and hope it turns out to be as enlightening as I hope it will regarding what he’s going through with these treatments. One picture in particular really highlighted the changes to his color that occurred right after he began. His face and neck had been very red, and amazingly enough, was captured with his picture. His hair is hanging on much stronger than we thought it might, so it’s been nice to remind him that he still, during chemo, has more hair than some of his friends. Oh, the ironies are everywhere when we simply take the time to be aware.
He gets a week off now, and while he may think that’s a good thing, I think he also realizes what it will mean to him to start the cycle over again. He may just be getting his feet under him when he starts all over again. At least he does seem to get relief from the anti-nausea meds they prescribed for him. We are both hopeful that he will hunker down for the winter and once chemo is over he will get some of his energy levels back. With the cold coming, it’s not too smart on our part to be thinking we’ll be doing anything but laying low. It’s just unfortunate timing for Terry right now that this is going on around the holidays. I want him better, but I also want him to enjoy the season and not just endure it.
Tomorrow he has labs, and provided everything looks ok, we’ll head to Miami the following day for his niece, Kaci’s wedding. Our plans involve nothing more than sitting on the beach, and soaking up all the healing, beneficial, soothing rays of the sun we can. I think it will help both our mental outlook as well as our physical beings to spend a couple of days on the beach. White sand, blue water, clear skies? Color us there. Until it’s time to head back home, so he can start chemo all over again. Hopefully the benefits of the brief escape will continue and he’ll find the next round isn’t as bad as the first one was…time will tell.
Chemo: The Other “C” Word
Tomorrow is the day Terry starts chemotherapy for the bladder cancer. His regimen will be a combination of three aggressive drugs the first time. He will lose one of each of them over the next two weeks, and by the fourth week will have no treatment. After that week he starts the cycle over.
He will receive two months of treatment like that, and they will do another scan to see if the cancer has had a favorable response to the chemo. If so, they will continue with plans to remove the bladder, prostate, and lymph nodes six weeks after he completes chemo. That six week period will give him the chance to build his strength back up. If there is no measurable response, or if there’s been no response and the cancer has continued to advance, that will lead to a different plan of attack. We aren’t discussing that yet because we are still optimistic that where it is will be contained enough to allow surgery.
The surgery will be really hard on him. He asked the surgeon about the surgery, and the fact that he’s had open heart surgery makes him want to believe that’s as bad as surgery can get. He was told that not only will there be a 4 inch incision in his abdomen to permit removal of the diseased organs, but they will be taking a section of small intestine to create a reservoir to trap urine in place of the bladder which will be removed. It’s going to be really tough on him.
But he has to get through the chemo first before we worry about the surgery. We’re going to start taking a picture a day, beginning today, to chronicle the changes he goes through. Fortunately for him he’ll be doing this short term. Unfortunately for him, the results of the chemo will be felt very quickly due to the intensity of the drugs. I’m hopeful he comes out of it on the other end without too much nausea or discomfort. That would be a blessing for him. And for me. The idea is to get him better, not make him worse.
Keep checking in to see the changes in Terry as he begins this challenge. I think you’ll find it gives a more personal acknowledgement to what he’s going through. It’s easy to think of people in terms of numbers, rather than individuals. Each cancer fight is about individuals, and those who love them. The personal face of Terry will make it real, not hypothetical.
Round one: diagnosis. Round two: treatment. Here we come….