I have to say, it’s been more than a minute since I’ve posted an update, and its not for lack of content, lol It’s more about myself, taking a break from all this cancer stuff to just … be.
Its been more than 2 years now since my husbands initial diagnosis and surgery. It’s been a little over a year since he completed (hellish) chemo. Just after chemo, we ran head first into Covid 19, which was a struggle in and of itself for other reasons. Honestly, I feel like now, just now, I’m finally coming out of the fog that started in April 2019.
So how have I survived?
Good question. People ask me this all the time. How did you do it? How did you get through all that? I mean, as this blog clearly illustrates, it was not easy, but time has given me something I did not have while I was in the thick of it. Perspective.
In the beginning, it was all about learning as much as I could about this cancer. I sucked up knowledge and became an encyclopedia of appendix cancer factoids and statistics. In retrospect, was all that healthy? Maybe, maybe not. I talked myself into scenarios and I put myself in the shoes of those going through something so much worse than what we were actually experiencing. I made myself believe that things were worse than they were at the time. I kept waiting for things to go very very wrong, and I couldn’t get on board with things actually going very very right. Maybe right is not the correct term, maybe okay, very very okay. But I think I was trying to shield myself from a worst case scenario. If I told myself that things were going to be awful, then I would not be caught off guard if that happened. IF that happened. It never did. My husband may have been healed, but I was not healing.
So how did I overcome this? Welp, a few things, but what it really all boils down to is this:
Giving back
I threw myself into others. Some efforts have panned out better than others, but the intention was the same through everything. One of my first attempts was a Kindness Brigade Facebook page which was focused on helping those in our immediate neighborhood facing tragedy. I live in a very tight knit neighborhood and we have a very giving community spirit. So I tried to organize around that and we had some success, but the effort ended up being a bit more than I could manage and I sort of just let it die. It was a really good idea tho!
My second attempt was sort of in the same vain, when Covid hit, I tried to rally our neighborhood to participate in a cash mob to flood our local businesses with a cash influx when everything was shutting down and the idea of carry out was the only option left for restaurants as a survival mechanism. It worked very well in the beginning, but as the pandemic wore on, people became disinterested and that effort faded as well.
At that point, I was sort of grasping at straws to find a way to channel my energy into something that was meaningful for me, but was less of an ownership role. That’s when the heavens parted and angels sang, and a notification that the ACPMP Research Foundation was accepting applications for a brand new Patient Advisory Council! This was EXACTLY the thing I was looking for! This is the only entity that exclusively supports my husbands rare type of cancer, I was elated! I couldnt wait to submit my application! I had found my niche group and I have been so happy participating in the calls and events to try to help raise awareness and raise funds for research!
Very soon after I become a part of the Patient Advisory Council, I had another opportunity to join the board for a local organization that helps celebrate milestones in cancer patients’ journeys, 3 Little Birds 4 Life, so I jumped at the opportunity to help in a local capacity too!
It is through the process of helping others that I have actually found the healing I was searching for for the past 2 years. It has helped me emerge from the fog and let go of a lot of the worry and doubt and concern that was weighing me down. It has been a slow and arduous process and, go figure, it has taken me WAY longer than my husband to heal from all of this. lol
So how is he doing?
Welp, he’s great! We were in Houston last month for his first face-to-face meeting with the specialist team at MD Anderson since our initial consultation way back in 2019. I am happy to report that the “thickening” that had been noted on my husbands previous scans was not seen on this scan and we finally, Finally, FINALLY saw the word UNREMARKABLE, and heard the words No Evidence of Disease, and for the first time in this journey,
(If you got that 80’s movie reference, you are my people. 🤪)
So. It’s been a minute. Let’s talk about unremarkable. This is the term that radiologists use when they have no finding to report on a CT scan. Unremarkable. Its absolutely insane to think that anyone who has been through cancer should be lumped into the same category as any old Joe off the street who goes in for a CT for something completely mundane (likely not mundane to the person undergoing the CT scan, but for all intents and purposes, ALL scans that do not have to do with cancer are, in my mind, mundane) and their scan indicates no problems found. “Unremarkable” is the term used when everything looks normal. As in, there is no remark to be made, all is as it should be. Unremarkable.
My husband had his last CT scan on April 6th, that was about 2 months ago. This scan was meant to confirm what we all hoped to be true, that there was no evidence of disease. Now — if you’ve been reading this blog for any amount of time, you’ll recall that I have quite a distrust of these scans. I really HATE that we’re in this position. Stuck with a cancer in which there really are no good diagnostic tools to detect, but here we are and, for better or worse, we have CT scans. And the scan didn’t exactly give me faith in the process. Instead of unremarkable, we got this:
There are subtle areas of non-masslike decreased enhancement involving the cortex of the lower pole of the right kidney. In addition there is mild diffuse thickening of bladder wall.
That doesn’t exactly sound like good news, does it? While our oncologist strongly pointed out to us that she “doesn’t think” its a recurrence, welllllll I’m not so sure. This word thickening is frequently used to describe how this cancer is found and it brings me no peace to see it used here … even if our oncologist thinks its not cancer. I wish I could do something! I wish we could send this to our specialist team at MSK, but my husbands insurance changed on Jan 1 and they are no longer in our network! So we’re stuck just taking the oncologists word for it.
To be clear, I pushed and pushed for my husband to reach back out to MD Anderson in Houston to see if they would be willing to take a look at the scans. (They ARE in my husbands new insurance network.) Since we had already met with the oncologist there too, I think we might have an in and at least get a specialist team to look at them to ease my mind a little bit. But, ultimately, this is not up to me. My husband has to be the one to push for this to happen. I can want him to do it all I want, but at the end of the day, I cannot make the calls for him, they won’t talk to me because of HIPAA privacy laws. So I’m stuck depending on my husband to take care of it — and he won’t. So I’ve sort of had to let it go.
So I did.
And things have been GLORIOUS! After chemo was over and we were through the thick of if, the air lifted and everything became calm … well, as calm as you could get in the middle of a pandemic. But it has been so wonderful not having to worry about chemo or cancer or any of that for these past few months! Apart from the port in my husbands chest and his more lean physique, (can’t say I’m super mad about that, lol hubba hubba) we have very little physical evidence left of this cancer journey.
So about that port, he attempted to get it removed a couple weeks after his last chemo treatment, but they had stopped allowing elective procedures so he couldn’t. They finally called him back last week and he made an appt to get the port taken out on Monday.
I thought I would be happy about this. This whole time, we’ve both hated that thing, this constant reminder of cancer, this foreign alien body sticking out of his chest. When we cuddle, I tend to lay on that side and this hard rock, for lack of better analogy, just pokes me and I want it gone. But that little voice in the back of my head keeps hearing that word thickening and my mind immediately goes to recurrence. If he has a recurrence, the next step will be a different chemo regimen. We’ll be back on the awful chemo boat and he’ll have to get the port put back in. Another surgery, more time spent looking at my husband passed out in a hospital bed. I think at this point, I question whether he should get it out or not. His next scan is in about a month, on July 9th. At that point, we’ll have the 2 scans to compare and I think we’ll know for sure whether there is any type of recurrence or whether our oncologist was correct, and there really wasn’t cancer on the April 6th scan. IDK. Maybe I’ll have a convo about it with my husband, he’s not usually open to these types of conversations, he wants me to be nothing but positive and he really doesn’t want to hear anything else except blatant positivity … but the closer I get to getting this out, the more apprehensive I am.
In other news, I FINALLY got my daughters senior pictures taken! We took them last night and I am BEYOND excited to see them! We rescheduled 5 times and yesterday was such a special day for us!! She got her makeup professionally done, we went shopping last weekend for some outfits, we got to spend some really amazing quality time together and I do believe that as she begins her college career, our relationship is starting to mend itself a bit. This makes my heart so incredibly happy! Here are some shots I snapped from my phone, not the best angles, but I just ADORE them already!
So I guess the moral of this story is — I’m still desperately waiting for a scan that proclaims UNREMARKABLE! I have faith that it will happen, I just don’t know when that will be. Fingers crossed that its with this next scan!
Believe it or not, today marks my husbands LAST chemo treatment! We were SURE he would not qualify after going 2 weeks last round with his ANC being too low. But, we went in this morning anyway, certain we would be turning around and walking right back out within 30 mins, and low and behold! A Monday miracle! His ANC was at 1.9! That is the highest its been since this whole nightmare began, almost exactly, one year ago this month! He qualified! Tho his nephropathy has worsened, such that my my husband is having some balance issues … not that he told me this prior to walking into the chemo center and speaking with our oncologist, lol (Some things will never change, sigh) But when she asked about his nephropathy, he said it had gotten significantly worse and he was not only having trouble holding on to things with his fingers and buttoning buttons, but his feet were tingly almost constantly and its affecting his balance. He has not fallen, thank God, but they certainly did not want it to get any worse, so they completely removed the oxaliplatin from his regimen today and all they had to do was hook him up to the pump and he was ready to go back home! It was the SHORTEST chemo treatment ever! This was a welcomed surprise and it’s so close to the end, I actually don’t even care if the efficacy is lowered at all because of the dose reduction! I am SO happy to be SO CLOSE to the end of all this!
We were both clearly happy, giddy, even, at the news that he COULD get the treatment today and we WERE, in fact, only hours away from the end! It’s unbelievable actually. He will go back in on Wednesday to get the chemo-sabe box removed and then … THEN, he will truly be done! We will truly be free!
Wow. I never thought we would get here.
This entire past year has been so awful, so life-changingly miserable, that all I want to do now is just exist. The kind of existence that doesn’t know what I know about all this cancer stuff. The kind of existence that doesn’t constantly consider life or death situations. The kind of existence that finds it completely normal and sane to see my husband alive and well, and in my family’s future. I just want that existence for a bit.
So now I look to the CELEBRATION! Only recently have Andy and I talked about taking a small trip after all this is over with. No where extravagant, just a road trip to Kansas City (since we live in St. Louis, KC is only about a 3.5 hour car ride away.) But we didn’t want to jinx anything and all this has been SO unpredictable (to say the least) I think we both thought that if we even spoke the words, even mentioned “the end” that it would somehow not happen. Ridiculous probably, but I think we were both happy to sort of turn a blind eye and understand that we would just see it when we got here. Well, here it is! It was SO rewarding to hear my husband talking about it! At first he told me that he was taking an entire month off work once chemo was complete, lol While I knew that was a bit of an over exaggeration, I was SO happy to hear that he was SO happy to be done with this too! It’s no mystery that I’ve been in some very, very dark places over the course of the past year, that we’ve been in some very, very dark places with our relationship. I know we are not through the problems yet, but I do feel like we can finally turn a page. Things aren’t going to magically get better once the chemo is over, I know this, but I do think that without the weight of chemo on our (my) shoulders, I can finally relax for a hot minute and take a step back without being so damn intense and fatalistic all the time!
Maybe I can find the old me!? The one who was nothing but puddles of constant positivity and happy energy. The one who wasn’t angry all the time or who didn’t blow up at the slightest hint of change when some expectation was not met. The one who is thankful and considerate and shows those emotions in appropriate and caring ways. The one who is not resentful and can handle her kids for more than an hour at a time without feeling like I need to bring in reinforcements. I really hope that person is not gone. I miss her. I want to be her again.
The other day I snapped this picture of these two clowns, lol The sun was shining in through the windows along the back wall of our house and it illuminated the kitchen. I caught this pic just before the sun went behind a cloud and when I took it, I stood there looking at it and I thought, my heart! This boy loves is daddy so much, it makes my entire heart want to burst!
So now we celebrate! The week we’re planning to go is intentional. All this began a year ago, that random Thursday in late March when my husband had his appendix out. It was March 28, and he found out he had cancer a week later, on April 4th. We are planning our trip for March 30-April 5. It will be exactly a year since this nightmare began. I hope to have a very real and open conversation with my husband on our trip. I want to talk about the past year and how we’ve grown, and what we’ve learned. But most of all, I want to find our happiness again! That is my hope for the future.
What’s next?
Good question. My husband has his first follow-up CT scan 4 weeks from today. From there, he’ll have scans every 3-6 months for the next 2 years, then it will go to once a year until year 5. Of course, that is all assuming he does not have any sort of recurrence. I am scared of this reality, but I just can’t let my mind go there right now. Right now I am happy to sit in the moment and just be. We have made it this far, we will make it the rest of the way too.
Yep. $409,220.50 USD. That is how much Andy’s care over the course of 2019 would have cost us if we didn’t have insurance. It is completely insane to think about. I remember being SO mad at our decision to go for the high deductible plan through work back when all this started. It seemed like such an awful decision at the time, but, looking back? Oh man. I am SO grateful for our insurance! Sure. We’re still fighting with them and filing appeals about the $40k number up there under “Patient Responsibility,” and, sure, $40k is a HUGE number. But you know what an even larger number is? $409k!! Holy hell! This year, we put my husband on his own insurance plan. The deductible is only $2k and the out of pocket max is only $3500. This is MUSIC to my ears as we continue to struggle with the $12.5k out of pocket max from last year — not counting the co-pays for chemo, specialists visits, oncologist visits, ER visits … I could go on, but I won’t. I know we’re blessed, and Andy is doing so well!
But as we closed out 2019, I started wondering what 2020 was going to bring us? I’ve been so focused on getting through all this awful chemo that I had not really considered what would happen after its all over. From then on out, it’s basically a waiting game.
I hate waiting.
We are supposed to just move on. Go about living our lives as if everything is fine and like none of this ever happened. And as enticing as that seems, as much as I long for some normalcy and schedules that aren’t constantly in flux — how does one just forget that all this happened? Andy will have a CT scan every 3 months for the first 2 years after treatment and his tumor markers will be checked too. But I don’t trust scans as far as I can throw them and Andy’s tumor markers have basically always been relatively normal, even when the cancer was raging in his body … the tumor markers remained normal. Speaking of tumor markers, Andy’s were recently checked and they came back, not surprisingly, normal.
CEA: 1.4 (same as last time, normal is 3 or below)
CA 125: 8.8 (this is 1pt lower than last time, normal is 30 or below)
I’m afraid that there is nothing that we’ll be able use as a good diagnostic tool for this cancer as it does not trigger any of the “normal” ways to check for recurrence. Since the tumors themselves produce a clear mucus substance (which is INVISIBLE, because its CLEAR) it cannot be seen on a scans, and blood work for tumor markers is unreliable at best. I’ve had this doubt from the very get-go with this journey, and now here we are, and it’s all becoming real.
But I have to breathe.
Maybe it will be good to just forget all this happened for a bit, I mean, at least until our first scan. lol Maybe we’ll get lucky (lucky … not the right word here, but) and Andy will need surgery for a bowel obstruction once a year, and we’ll be able to get the surgeons confirmation that the cancer is not back. Honestly, that is the only way I will actually believe that he is truly in remission. And we know, as of this moment, that the cancer is NOT there, so after these final 4 chemo sessions, he will be in remission! That is a HUGE relief and an amazing testament to my husbands resilience and strength. To OUR resilience and strength as a couple in that we did not kill each other during this whole ordeal! But I can’t be mad at it. My husband and I were talking the other day and he said something that caught me a bit off guard. He said that he thought this cancer actually brought us closer together. I stood there, looking puzzled when he said that. I mean, nothing like a good life or death situation to really force you to prioritize your relationship over everything else. So I sat back and really thought about it. And in the grand scheme of things, in between our massive drop down, blow out arguments and constant bickering, we did learn a lot about each other. Things we likely would never have learned any other way. We learned a lot about ourselves and how much we could withstand and handle. We were forced to analyze and dive deeper into our relationship than either of us probably ever wanted to, and while this surfaced quite a few problems that were deeply hidden, I am so glad they were uncovered. It forced us to work through them and understand the others perspective and try to accept what we couldn’t understand (I still have problems with this!! lol) even if we didn’t like it. And now that we are near the end of this, I am actually grateful for the journey.
My husband and I are closer today than we might ever have been. I feel proud of him and his accomplishments, not just with this cancer fight, but with his everyday life! I want to enthusiastically encourage him to do the things he has planned this summer, such as getting his strength back and being more mindful of his time with family. I am, after all, his biggest cheerleader and I will always be there for him for as long as he’ll have me and accept my help.
I want to provide a small update on where things stand. While I am not excusing my husbands behavior in any way, he did come to me and offer a bit of an explanation into what has been going on. Over the course of the past 168 hours, or 7 days, he’s basically been in bed for 120 of those hours. This was agonizing for everyone, including him. I think a lot of the time I don’t show the sweet and kind side of my husband. His cool, calm and collected side which is rational and balances out my crazy. I use this blog to help myself understand my own thoughts and emotions and in turn, they are often displayed in a way that is raw, full of intensity, harsh and abrupt.
And one-sided.
While I am very comfortable displaying my struggle flag, waving it around for all to see — helping me feel less alone and providing comfort and support while I struggle, my husband is very private about his struggle. He wants noone to know, and does not want sympathy or comfort from others. He even gets upset with me, sometimes, when I tell others about his struggle. He claims that it causes unnecessary worry and he would just rather say nothing. He would prefer to suffer in silence with only me knowing the (somewhat) full extent of what he is going through. I’m sure what he’s shared with me and what I have witnessed is not even half of what his true struggle actually is.
While waving my struggle flag around helps me tremendously because it allows me to organize my thoughts in a cohesive manner and I find it unbelievably cathartic to write it all down, as I feel it, as it’s happening. I’m not always right.
Yesterday (Saturday) was the first day that my husband was able to get out of bed since getting the chemo box removed. It took him a bit to get going, but he mustered up enough energy to join us at a volleyball tournament and even participate in a Christmas walk along one of the cutest and most festive streets in our city! It certainly wasn’t easy for him and he had to take frequent break’s, but he managed because he knew how much he had missed, and how much it was affecting me. So he sucked it up and powered through.
When we got home that evening, he looked exhausted. Not only has he lost, what is likely, another 5lbs from this week of being in bed, not really eating, and sleeping all day, but his eyes are sort of sunken in now, and its very easy to tell when he needs to rest. It kills me to see his body withering away knowing that its only going to get worse and it will never be “back to normal.” But I am hopeful that after chemo is over, he’ll be able to regain some strength and start to take better care of himself on a consistent basis. Right now its all about survival.
Once we got monster to bed, we started talking about next weekend. He’s been planning a trip with his 2 best friends for a few months. Why I never put 2 and 2 together that it was THIS month, in DECEMBER, during one of the ONLY weekends he’ll be feeling well, is beyond me. (face-palm) Regardless, he’s been planning this trip for months and its next weekend. They are all driving to Cincinnati together to watch a football game. The three stooges! lol Srsly tho, one of them is in kidney failure and has to bring ALL of his dialysis equipment with them to do dialysis every night for 12 hours, my husband is in stage 4 cancer and currently going through chemotherapy, and the other one … well, lol He’s the lucky one of the bunch I suppose, he’s just fine. But here they all are, bound and determined to watch this football game. So, Andy is supposed to get chemo again on that Monday after the football game and, in passing, he tells me, oh — I’m just switching my chemo to Tues instead of Mon that week. And I sort of start to flip out. I tell him that switching to Tues would completely throw off the entire schedule for the remaining treatments. Not just that, but we purchased tickets for the Polar Express, which is a BIG deal to me and if he switches to Tues then he basically has NO chance of coming with us to this event and that literally breaks my heart … and I go on and on.
This conversation begins a bigger conversation about what had transpired that week. I tell him about the internal struggle I was having and that I had been thinking about letting go of that burden of concern. When he challenged me to think about what would happen, like what the result would be from letting that go, how that would actually physically manifest itself — I told him. I was completely honest. Through tear filled eyes, I shared with him that I was terrified, because if I gave it all to him, he may never ask for my help. He may never tell me I was needed or wanted for the support I could offer. And that was what I thought would happen if I gave it away. It is the most terrifying outcome that could possibly happen for me out of this situation.
He looked at me, he walked over to me, he put his arms around me and he said “I can’t do this without you.” He told me that he did want my help and my support, that of course he wanted me there with him at all his doctors appts and during hospital stays, he appreciated all the time I was spending with him at every step along the way. He admitted he did not have the capacity to remember all the information or stats or even understand half of what they doctors were talking about and he relied on me for that too. He said the day he told me he didn’t owe me any information was a rough day for him. He was feeling awful and he was embarrassed and in pain from his constant diarrhea situation and was just completely over it. He took his frustration out on me and he didn’t mean to do that.
The conversation continued for a bit and he even said that he’d been thinking of just calling the oncologist and cancelling chemo for December, like I had wanted all along. He admitted that he didn’t want to deal with it either and clearly this was only going to get harder from here on out. He hadn’t made a decision yet, but he wanted me to know that he was considering it.
I was reading something today on a Facebook post in my Appendix Cancer Support group. The person posting was worried about an upcoming CT scan (something we call “scan-xiety”) and, fearing the cancer was back, was wondering what others who had a recurrence had seen/felt/been through just prior to that 6 month scan. So others were helping her out giving their experience and advice, and someone had commented with a response that literally shook my world. She said that she has decided not to worry about her scans any longer. She emphasized that she is not being complacent by any means, and that worry creeps into her life at very random times, but she had chosen to let the experts carry the burden of concern. She said she was doing her part in following their recommendations and staying on top of appointments and such, but this has allowed her to live her life free from guilt.
The burden of concern. Wow. This spoke to me.
This week began (again) the chemo journey for my husband. Almost 5 weeks to the day from his last surgery, he’s back on chemo. The time off was GLORIOUS! Andy was feeling well, he was getting his strength back and I could see the light starting to return to his eyes. It was all I could hope for! There was little to no arguing, a VERY good thing for us, lol There were simple nights, there was consistency with schedules, there was no panic or concern for his well being or his health. We went on dates, he was energetic and we were connecting again like never before! And I wanted it to last.
The one thing we did argue about during that 5 week hiatus was him restarting chemo again in December. I wanted him to hold off for another 4 weeks so we could have the holidays and just be “normal” for a little bit longer. In my mind I was thinking that this could be the last set of holidays I could ever possibly celebrate with him. I know that sounds awful, and BELIEVE ME, I do NOT want that to happen, or even to really think about it at all. But. It’s a reality I now have to contend with and as awful as it sounds, if that is our future, I want these last holiday memories to be full of life and joy and I want him to be healthy, showing off that light in his eyes, that has been missing for so many months, for the kids and for me! On top of that, I just do NOT want to be all alone during Christmas. Being a single parent doing EVERYTHING while he sleeps for 70-80 hours at a time. Drinking wine, watching Christmas movies by myself. Shopping by myself. Creating memories void of him, all the while trying to keep a happy face on for everyone else, while inside I’m screaming and crying. It’s just a lot to handle and I feel like he is not doing anything to acknowledge that struggle. In addition, the efficacy of this chemo is basically SO low at this point, that waiting another 4 weeks to start this again in January would NOT have one iota of effect on anything. Haven’t we been through enough this year? Why couldn’t we just take this month and celebrate how far we’ve come, give thanks for all the small miracles that have happened, and rest and recoup for the next 6 chemo cycles to begin again in Jan? Why can’t we think of the surgery as a blessing in disguise and use the break it has afforded us as a MUCH NEEDED reprieve, and extend it through the holidays?
His argument against all that? “The oncologist advises we start as soon as possible.”
Ughhhh WHAT? You mean to tell me that the oncologist who we don’t like and have had problems with from day 1 is all of a sudden your single source of truth and your taking her word as gospel? You mean the oncologist who’s advice you have always taken with a grain of salt? You mean the oncologist who’s recommendations you outright ignore and continue to do what YOU want to do regardless of what she tells you will be best? You mean to tell me that now, right now, all of a sudden, THIS is the advice you are taking as prescribed without any qualms or questions or thought into how that might effect all the other people around you? You really, truly think that this, THIS one thing, this one suggestion is the single piece of advice that is going to make ALL the difference in your course of treatment? Is that what you’re telling me?
It was.
And regardless of how much I pleaded and begged and reasoned, he had made up his mind and there was no changing it. I just couldn’t understand why he would choose this ONE thing to hang his hat on. It felt vindictive. It felt like he was doing this to spite me or to do the opposite of what I wanted him to do to win some weird, twisted and completely unwarranted power struggle. I just couldn’t wrap my mind around it. It made absolutely no sense to me. But, as I’ve learned, this is his treatment and every step of the way, he’s done what he wants to do.
So we met with our therapist and we talked about this issue. I know she can’t take “sides” but I swear she was on my side on this one! I voiced my concern that I just wanted to be on the same page, and not only were we NOT on the same page, but we were in completely different books.
What does it mean to be on the same page? In my mind, I think of a team. A football team, for example. Everyone on the team has the same goal, everyone is aligned on how to achieve that goal and the plays are agreed upon and carried out by those who are ALL on board with that strategy. While Andy and I have the same goal, there is absolutely no alignment on how we get to the end zone.
While we didn’t come to a resolution during our therapy session, we talked a bit more that night, and to my absolute surprise, something amazing happened! We were getting back into it and I again talked about being on the same page. He was having trouble understanding what I meant by this. So I kept trying to give him examples, and he kept telling me that he didn’t understand what I was saying. It was frustrating. So, I tried one last time to explain to him what I wanted, and how he needed to take that, and re-purpose it to fit into how he did things. I gave one last ditch example. The week before all this, I was at my annual work conference and I ended up with the emcee job for our Innovation Summit. My coworker (who happens to be a HUGE football fan, just like my husband) and I had worked on the script together for a couple weeks. He ended up putting a few football references into the script. Now, admittedly, I am not a sports person, and although I had NO idea who those players were, and I felt sort of silly saying their names and talking sports during my speech, I knew they were players on a football team. I made that connection. So, I asked Andy to relate that to the conversation we were having. In the same way I was telling him how I needed to be on the same page, he needed to be able to take what I was saying and put it into a context that he connected with. And he did.
He took a moment, thought for a second, and then walked over to the stove. He pulled our small kitchen rug that’s positioned under the stove over to the middle of the floor and walked back to me. He took my hand, looked at me and said, “I’m going to tell you something and you’re not going to like it.” He led me over to the rug and we both stood on it. He said, “This is our page, and I need you to be on it with me. I don’t like this page, but here we are.” I immediately started bawling my eyes out. He gave me a huge hug and I told him that I hated this page, but I was on it with him.
It was a soft and tender moment that I needed. I reset my expectations and immediately began to come to terms with being on board with starting the chemo again the first week of December.
And everything was going so smoothly! We went to the chemo center on Monday, he got the infusion, was sent home with the chemo box and things were okay. This is round 7 for him and this whole time we have been warned that the effects of this chemo are cumulative and my husband really wouldn’t start feeling all of them until the back half of the treatment cycles. Welp, we’re there, and he’s feeling it. He’s basically been in bed since Monday evening. Other than the 8 hours he was at work on Tuesday, he’s been in bed. Its Friday. He’s still in bed. That’s 5 days he’s been in bed. He’s never been this laid up with his other treatments, so I kept asking him if everything was alright and how he was feeling. Now, I get that this can be annoying. I absolutely appreciate that. Honestly, the one thing I just CANNOT stand right now is when people ask me if I need anything or ask how I’m doing. I know they mean well, and I know they don’t know what to say, so they ask me and they think I’ll know what I need. But I don’t know either. I am always kind when people ask — but, really. Stop. I digress. So I basically equate the how are you feeling? question that I’m sure he gets ALL the time to my what do you need? question. And I GET that! I get it. But its one thing for my husband to ask me what I need, and its a completely different thing for a friend or neighbor to ask what I need. First off, I would LOVE if my husband would ask me that question (hasn’t happened yet) but find it unbelievably irritating when other people ask me.
So on Wednesday, all was well, I had a really good work meeting that morning and I went up to check on my husband in bed and found myself asking him a series of questions, How are you feeling, are you still feeling nauseous, are you ready to leave to head to the chemo center to get the box removed? Not a big deal, just trying to get a gauge on his well being that day. He said that he would need 10-15 mins before he was ready to leave and I inquired further about this time he needed, asking him why? I was thinking he might be in pain or was so out of it that it would take him 10-15 mins just to compose himself and muster up enough energy to get out of bed. Basically, I just wanted to know if there was something I could do to help. So I asked another question about why he needed all that time — which apparently set off an entire series of events which left me completely dumbfounded and lost.
He rolled over to get out of bed, headed towards the door to the bathroom, and he said over his shoulder to me, “I don’t owe you any information.” As he continues his walk to the bathroom I say in a very defensive voice, “Excuse me? What did you just say to me?” And the the bathroom door shuts.
I could feel my blood start to boil. Wait. What just happened? What the actual fuck is happening right now? You don’t owe me anything? EXCUSE ME? OMG! I was furious at this statement! It was completely unwarranted, absolutely out of place and, MY GOD, everything was going SO WELL!! What do you mean you don’t owe me anything? DO YOU KNOW WHAT I HAVE DONE FOR YOU???!! I mean, I know most everything I do goes completely unnoticed and unappreciated by him, but to be told blatantly, to my face, in an open statement, that he doesn’t owe me anything? Oh, I was livid. So I went into another bathroom and instead of getting ready to head to the chemo center I popped on my workout gear and got ready to head to the basement, where I have my home gym. You don’t owe me anything, huh? You’re right. I don’t owe you anything either, so why don’t you just take care of today on your own. I have better things to do with my time, I said to myself in the bathroom mirror, trying to come up with some comeback for this hurtful and reprehensible comment he just made.
I head down to the basement and start setting up for my workout that day, I’m moving the bench around and putting the correct weights on the bar. I’m getting my music setup and I get a text message, I see that its from my husband, but I don’t read it.
A few minutes later I hear the water run down the pipes from what I assumed to be a toilet flush. A minute or two after that, I hear my husband come down to the basement. He comes into the gym area where I’m still setting up and he stands there doing something on his phone. I look at him and I say “I will not be spoken to like that” and I start in on how absolutely uncalled for that statement was, all the while he’s still trying to do something with his phone. Irritated that he’s not talking to me, I just stand there and wait for him to finish his phone situation. He finally says, oh, got it and, not looking at me or making any eye contact, he holds his phone up. I hear a computer voice. Apparently he was downloading a text-to-voice app and it was reading aloud the text message he just sent me. Here’s what the computer voice said:
The information that I’m hiding from you, is that I have to poop. It’s not a good poop. It’s bad poop. I’d rather not tell you that, because I don’t want you to think about good trooper bad poop when we are being intimate. I don’t want you to think about smelling it, I don’t want you to think about me having poop on my balls. I would rather you not know about all the poop. But you seem to really wanna know about it. Because I don’t owe you information, I have a right to withhold certain items. I know you’re going through a lot right now, and I’m not going through too much at all, but I ask you to bear with me.
As soon as the computer voice finishes. He shuts his phone off and silently walks away.
This infuriates me even more than I was before. First off, I have SO many questions on what just happened here and what the contents of that text imply, but more importantly, I am NOT going through a lot right now, I was 1000% absolutely on board with ALL of this as of 30 mins ago, and NOW its all gone to shit — not because I’m overwhelmed with the situation but because my husband is being a complete ass hole!
So I follow up him the stairs, voice raised, telling him that I want to talk about this! That I didn’t understand what I had done and I was completely caught off guard and I was SO completely hurt at what he said. He calmly walks around the house gathering his things and as I’m getting more and more angry at this whole situation, he chimes in with little digs like oh, looks like I must have tripped another live wire, and other belittling comments about how I’m overreacting and he won’t talk to me when I’m like this. He walks out the door, gets in his car and leaves. He was going to the chemo center without me, and I was an absolute mess. I call my best friend and immediately start telling her what just happened.
It takes her a good hour to calm me down. She is probably the one person who’s advice I trust the most as she can see both sides of the story, frequently plays devils advocate and has a perspective that is unique. She lost her husband about 5 years ago in a tragic accident. She had 4 young children, the youngest being 7 months old at the time of his death. She knows what agony all this is on me and she might be the only person who can truly understand how I feel. She knows our struggle more intimately than anyone else on this planet, besides myself and my husband, and on this call, she gives me some advice that she had never given me before. She said that it was time to give him what he had been asking for this entire time. The thing I had been fighting against tooth and nail because it goes against EVERYTHING that I am. It’s basically asking me to be a different person, to change my entire thought process and compassion model and literally everything about how I do anything.
She was asking me to let go. She reasoned that my husband had told me time and time and time again that he didn’t want my help, he didn’t need my support, he didn’t like any of the ways in which I was attempting to encourage or empathize or champion his care. His actions have spoken louder than any words could. And she was right. He was constantly pushing me away and in turn, those actions told me I wasn’t needed. But I WANTED to be needed, I WANT to help him! The reality stands tho, he doesn’t want my help. Not when he’s feeling sick, not at doctors appts, in fact, he rarely wants me present anywhere, even when he’s on the phone talking about his treatment. The questions I want to ask his care team he finds irrelevant and won’t allow me the opportunity to ask. The hours of research and studying I have done to find second opinions and learn as much as I could about this cancer and how to combat all the symptoms of the awful treatment, he completely disregards and dismisses as unsubstantiated nonsense. The organizations that I have found which offer support and give advice for those faced with this diagnosis, he has no interest in reaching out to or connecting with in any way. He pays no attention to how his decisions will impact me or the kids or anyone else, for that matter. He simply wants to be left alone in this. …Except for maybe when he has a bowel obstruction and needs a ride to and from the hospital. Great. Now I’m a taxi.
So here I find myself. Less than a week ago, my husband and I shared this amazing moment where we were finally on the same page, and now — we’re again in different books. And I’m struggling with a decision I have to make. How do I stop caring? How do I stand back and just watch this happen from the sidelines? I am finding this internal struggle to be one of the most difficult things I have ever dealt with. But what choice do I have? Continue on like we have been? Fighting against eachother, me on one side wanting to give care and support. Him on the other side telling me to go the fuck away, he doesn’t want my help? They say the true definition of insanity is doing the same thing and expecting different results. I know what the next 5 months will be like if something doesn’t change. I can’t expect him to change, I know that won’t happen, so I have to be the one to completely change who I am, with the hope that it will only be temporary until this treatment is over. But still I am struggling, and that’s why this concept of handing over the burden of concern really piqued my interest. Sure, the original idea was about anxiety over scans (scan-xiety), but it is a direct parallel to my current situation. Handing over the burden of concern to my husband is something I never really entertained. Mostly because he doesn’t feel any type of burden by this diagnosis and just keeps on keeping on completely unphased. I have been the one to carry all this on my shoulders, but I have to question, is that the right place for it? Especially since there seems to be no slack being taken up by him. I’m coming to the realization that I’ve been shouldering all this on my own for far too long and maybe I just need to place that burden on someone else. My husband, the doctors, anyone else except me.
Im not sure how I’ll navigate this next part. I’m scared because on one hand, I want to remain in control and know the information, such as my husbands ANC levels, his test results, his weight, his tumor markers, all this which has been my coping mechanism and has helped tremendously throughout this journey! Especially since my husband doesn’t talk to me about this and I’m fairly certain he won’t share any of these stats with me … he probably doesn’t even take note of them. On the other hand, I want to let go, give him what he has been asking for and not have to constantly worry about this. I want peace in my life and to be free from this battle between me and my husband fighting against eachother.
I hate this. There is not an option that brings me peace or happiness in any way. It’s basically a choice between constant outward struggle between me and my husband or constant inward struggle between me and myself. I don’t know what to do.
No way to sugar coat this one, we’re back in the hospital again with another bowel obstruction. A really shitty problem that I feel like we just battled with. As of now, I’ve been up since about 3AM when my husband started stirring enough in bed that I took notice. Around 3:15, he got up and exited the bedroom. 15 or so minutes later, he came back in and attempted to lay down again. I could feel him wiggling and moving his knees and as he was laying there, I could tell that he was uncomfortable. Then he got up, moved to the floor and assumed the child’s pose position. I knew immediately what this meant.
Another bowel obstruction.
So, we gather a bag and I appoint my oldest teenager in charge of the 5 year old should he wake up and notice we are not there. I tell her that we’re headed to the hospital and I’ll be back before she leaves for school. So off we go directly to Barnes downtown (a 40 min drive away from our house) knowing that if we go anywhere else, we’d be transferred there anyway and then we’d have another $800 ambulance bill to contend with. (rolls eyes) So we arrive around 4AM and we get checked into the ER. Once they decide to admit my husband, they roll him off for a CT scan, and I decide to head back home hoping I can get back with enough time to catch a quick nap before I do preschool drop off for the 5 year old. However, when I get home, my mind won’t shut off, and my attempt to sleep for a bit is undermined by my anxious brain. So I get up, drop monster off at preschool, make sure my babysitter is avail to pick him up, and rush back to the hospital.
Now, almost 9:30AM, I weave my way from the parking garage up to my husbands room on floor 6. Back together with our old friend, the GI floor, lol Clearly it had been too long since we’d seen the whole staff! The only bright spot here is that we’ll be back under the care of Dr. Glasgow. Our favorite surgeon! So now, here we sit, my husband with this nasty NG tube up his nose and the pump running to suck all the contents out … only nothing is coming out. I realize that every obstruction is different, but last time there were buckets of gunk coming out of my husbands stomach almost immediately after inserting the NG tube. This was gross, yes, but it also alleviated the pressure and the pain he was experiencing. But this time? We’ve been here now for almost 12 hours and he’s still in pain with lots of pressure and NOTHING is coming out of the NG tube!? So I’m not sure what that means.
Fast forward 24 hours later — WOW. Things moved fast yesterday. After hours and hours of my husband being in pain and being uncomfortable, we finally saw our friend Dr. Glasgow around 5pm. He said that the results of the CT scan clearly showed a closed loop bowel obstruction and this was very different than the bowel obstruction he had last time. He said this type of obstruction rarely cleared on its own and suggested surgery ASAP to resolve this. He was worried that if they waited any longer the blood flow to that part of the bowel would be so restricted that the bowel might die and he’d have to remove that portion. Not something we wanted. The thought of putting my husband through yet ANOTHER surgery was literally unbearable, but we really had no choice. We could have waited to see if it cleared on its own, but 1. Andy would have had to suffer through another night in pain and 2. we could have risked further damage to the bowel. So we agreed to proceed and my husband was immediately prepped for surgery. Since Dr. Glasgow is intimately familiar with my husbands history and innerds, he said that while he had him open he would also look around for any signs that the cancer had returned. Honestly, this was the ONE bright spot in this whole awful ordeal! I mean, our cancer surgeon, opening my husband back up to physically look inside with his own eye balls??! This is EXACTLY what I wanted! I don’t trust a CT scan as far as I can throw one. They don’t work for this type of cancer, so I was elated, overjoyed even, that he offered to take a look around while he was “under the hood” anyway!
The surgery only lasted about 45mins, but they went in through the same incision they used last time … and they cut him just as wide open too. Ughhhh My poor husband. The good news, tho, was that everything went just as planned, no surprises! Which I was so happy to hear. Dr. Glasgow said there were 2 prominent “bands” of scar tissue strangling the bowel and another band that was almost as close. He removed them and even went through and removed scar tissue from other areas on the intestines that looked like it could potentially turn into a bowel obstruction of some sort. Then, (my favorite part) he took a look around for any signs that the cancer had returned … and it HADN’T! He didn’t see any signs of recurrence! Hallelujah! He said that he resected a larger portion of scar tissue and sent that to pathology, just to be sure, but he did not expect that to come back positive for cancer. I can’t even begin to describe how relieved I felt when he told me this! I mean, here we were, not even 6 months out from my husbands big HIPEC surgery and he was still clear from the big clean out! Breathe. Such a wave of relief! This is the thing I’ve been most worried about; Tracking this cancer. It seems that CT scans and blood work are extremely unreliable to detect growth, but a surgeons eyes? That is the detection mechanism that will never fail, will never be unreliable and will always provide me with the fullest, most complete picture and the most comfort as we move forward. Now, I realize I can’t really expect this to happen every 6 months, or even every year, but I’ll take it when I can get it, and this is pure joy for me! A nearly 100% confirmation that the cancer had not returned! …pending the pathology from the scar tissue sample.
So now its a bit of a waiting game. Since he had this surgery, chemo will have to go on hold for 4-6 weeks. I wonder if I can talk my husband into taking the rest of this year off from chemo and having the holidays, then finishing off the remaining 6 rounds in January? I mean, haven’t we been through enough this year??! For reelz. Who knows? lol For now, its back to healing, and hanging out around the house, and more episodes of The Office. (rolls eyes) Which I’ll gladly take any day over seeing my husband in that kind of pain!
Over the course of the last week Andy has slept more than he ever has. We were so surprised when we went in for his infusion at the 2 week mark for round 6 — and he actually qualified to receive the chemo! His ANC was at 1.3! Andy and I were both elated …and dumbfounded. And frustrated, since we had already planned for this week not to work out and that we’d be back next week for the actual chemo infusion. But, nope, that’s not our life! No planning for us, nope. None.
So he got the chemo, for the first time EVER, on schedule, at the 2 week mark. But even before he received this round, he seemed exhausted. Over last weekend we went to the pumpkin patch, its close to Halloween and picking pumpkins is one of my favorite family traditions! Andy was so exhausted after we came back that he literally laid down on the couch and slept all afternoon, into the night and right through to the next morning until about 9am when he finally woke up. I counted it. It was 18 hours straight. 18. Hours. Straight. What I wouldn’t GIVE to sleep 18 hours straight! Then he went to bed at 8pm that night!? I get it, you’re exhausted, but bloody fucking hell!?
So chemo was this week. We just came home from getting the chemo box removed and his symptoms are intense. I’m not sure if its because of the cumulative effect of the chemo and now that he’s on round 6, hes just feeling the effects of everything? Or if its because of the lessened recovery time? Since he’s never had chemo on the 2 week cycle, its always been 3 weeks, we’ve never actually got the chance to see what an every 2 week infusion would feel like before now. Either way, he freaked out yesterday when he went into work and his fingertips were numb and tingling and painful. This is the neuropathy I’ve been warning him about. He said it got progressively worse from about 9am to noon when he called the doctors office and they told him to go to the ER!? I’m not entirely sure what the ER could have done for him at that point, but regardless, he decided to “clear his desk” at work before heading to the hospital. By the time he was done and ready to go, the numbness had subsided a bit and it was no longer that bad. So he ended up not going. He didn’t tell me any of this until about 3pm when he had already decided that he was not going. I encouraged him to reach back out to the doctors office and see what they had to say, so he did. He called and left 2 messages but since it was already 3-4pm, it was basically closing time and he never received a call back. It was fine since we were going there the next day anyway. Then this morning, he was attempting to make breakfast and he was dropping cheese from the refrigerator onto the floor and telling me about how his fingers were just not working with cold things. Me, being prepared for this exact situation, I show him where the gloves were that I stashed on top of the fridge, just for moments like this. I had done this and told him about the gloves a while ago, but it had never really been an issue until this point, so he likely forgot about it. Chemo brain and brain fog are REAL people! He forgets things and is certain that he has NOT forgotten things, and its so frustrating for both him and I! For example, last weekend, we were talking about replacing the tires on my husbands car. He drives a ton for work and his tires were looking pretty bald. So, we stood outside, near his car, and had an ENTIRE conversation about getting a few different estimates and then going with the one we thought was best, etc… yadda, yadda, yadda. Not really a big deal. But he legitimately forgot we even discussed this whatsoever! So when I asked him for an update on what he found out about the tires, he looked at me like I had 2 heads! He had this puzzled look on his face like he had NO idea what I was talking about. He actually did have NO idea what I was talking about. He misplaced the entire conversation in his brain and was absolutely convinced that we did not talk about the tires and I was the one who was mistaken. I just smiled and nodded and brushed it off. Of course I did give him some trouble about it a few days later, lol Joking of course, I mean, if you can’t make fun of cancer, what can you do?
But the exhaustion. Oh dear Lord! The exhaustion! I’ve stated before that I just totally don’t get this whole exhaustion thing. Geez. I mean, come on! It’s only going to get worse! And, I know, I know. I understand that he’s on chemo and that this causes it. I know there is nothing he can do to prevent it or mitigate it. Yes! I know all these things! I’m not upset or angry because of it, its just SO frustrating that I’m basically a single parent while he’s SLEEPING. It just rubs me the wrong way. I can’t help that, and I’m not going to apologize for feeling that way. What can I say? I’m an ass hole. Just because I know all these things, doesn’t make them any easier to accept. I don’t have to be happy about the fact that all this is happening, I just have to get through it. And if I have to get through it, I’m going to bitch about it the whole way. It’s a cycle that clearly works for me, lol So here’s my husband, at the chemo center, getting the chemo box taken off and getting fluids, asleep, cool, calm, not a care in the world and completely unaware of anything that’s happening. And here I am. Well, being me, a ball of anxiousness. Watching my husband hooked up to tubes that drip God only knows what. I don’t know why I have such a problem with this port in his chest!? I mean, I don’t have a problem with IVs that go in your arm. Why does it just seem SO. Much. Worse. because its going through this port?? I can’t get over it. It is what it is.
So now he’s off to sleep for about 72 hours. Meanwhile, I get to hold down the fort and keep everyone sane and fed and to the right practice/class/activity at the right time…maybe a little late, lol
I’m not sure what symptoms we’ll encounter this round. It seems like every round is completely different! The diarrhea has actually been SO much better for a few weeks, which my toilets (and me) are SO grateful for!! He lost another 3.5 lbs, but he was up a few pounds when we first checked in on Monday, so its sort of a wash. He stays between 190-195 lbs now-a-days. He was down to 186 lbs at one point, but he’s had a bit of a comeback and has held fairly steady at 190-195 for a few rounds now. Hoping that trend continues!
To say the last few weeks have been frustrating would be an understatement. Both because of ongoing differences of opinion between myself and my husband, and, more prominently, because Andy’s ANC count has been abysmally low and is a constant thorn in our side. Right now, as I sit here in the chemo center, Andy is in the process of infusing round 5. If you are keeping track, we should be on round 7 right now. Instead, here we sit. Round 5.
Its impossibly frustrating to be constantly told that you have to wait another week. We plan our lives, our schedules, our kids schedules, our work schedules, literally EVERYTHING around this ridiculous chemo — and to have to reschedule everything because his ANC counts are too low EVERY. SINGLE. TIME. This shit is getting old. He is not responding to the chemo well, its been much harder on him that anyone could have anticipated, his body is just not tolerating it.
And there is nothing we can do about it.
So, instead of getting the chemo every other week, we have gotten it every 3 weeks. He has never once, NOT ONCE, received his chemo on schedule. He’s getting the Neupogen shots, they even LOWERED the dosage of his chemo for round 4 thinking that the lower dose would give his body a fighting chance to recover properly, but nope. We came in last week (on the 2 week schedule he’s supposed to be on) and his ANC was still at 0.8. We just can’t get it any higher on that 2 week mark. We’re doing the shots, we lowered the dose — they REALLY don’t want to lower the dose any more because, I mean, at what point does it just become completely ineffective? At what point are we putting him through all this awful chemotherapy for it to have no effect on the cancer whatsoever?
Our oncologist insists that she has witnessed people’s bodies just somehow miraculously decide to start cooperating with the chemo and handle it better after a period of time, so she decided to keep the same (lowered) dosage for him for this round. But Andy and I are convinced that it won’t be enough and we’ll be in the same boat in 2 weeks when we come back. Ughhhh It is just so damn frustrating.
This is just so much harder than I ever imagined it would be. Even as I sit here, I’ve seen him receive this chemo 5 times now. It never gets easier for me. I still feel a wave of panic as they bring it out and hook him up. Knowing he has this special port in his chest for easier access. Why do I want to make this easy for them? I want to scream at them to get that shit away from my husband! Completely irrational, I know. But it still makes me uneasy knowing this poison is going into his heart, knowing how it’s going to make him feel and how his body is basically withering away from all this. He has no muscle tone left, like, none. He gets winded walking for too long or heaven forbid he have to go up more than 1 flight of stairs. He’s lost more weight, only 2lbs this week, but still. His 34 waist pants are literally falling off him. Time to sneak the 33’s I’ve stashed away, somehow knowing this is what would happen, into his wardrobe.
Beyond the actual chemo, this week has been good, but the few weeks prior to this, it really was constant fighting between us. His smoking has gotten SO much worse. He went from maybe 1-2 nights a week to more like 4-5 nights. I went through, one day, in a total rage, and literally threw away all his smoking shit. I hid all the lighters in the house, all the matches and anything that could be used to light a cigarette. I threw out all his vaping things all the battery chargers, all the liquid nastiness juice crap that goes inside them. I cleaned out his bin of smoking shit he kept “hidden” in the basement. I took all of it and literally threw it in the dumpster. I couldn’t take it any more. Everywhere I turn I hear people dying from vaping and smoking and it was all just too much. He already has cancer for Christ’s sake! So I tossed it all out. And it felt really, really good.
And he was SO mad at me. I mean, I have never seen him so mad. Now, his brand of “mad” is very different than mine. I could tell I hit a nerve because he started giving me the silent treatment. But in my mind, this was actually PROGRESS! I mean, I had been trying anything, everything to get him to react, and nothing I did garnered any type of reaction from him other than complete indifference or apathy. But this, THIS, I hit a nerve, and I hit it hard. This was probably the biggest fight we’ve ever had. The day after he realized I got rid of all his shit, he bagged up all the nice clothes I ever purchased for him and threw them into one of those parking lot donation boxes.
–Side note, my husband has a bit of a slob problem. He would probably still be wearing his size 38 waist pants at this point if I hadn’t hid them and gradually replaced them with smaller sizes. Srsly. He refuses to buy anything new from an actual store, he will only get his clothes from Goodwill or second hand stores. Which there is NO shame in, but he buys clothes that are 2, 3, 4 sizes too big for him! He has no style other than sloppy, and could really care less what others think about it. Which, again, is totally fine when we’re at home, sure. But I, on the other hand, while I am not a fashionista by any stretch of the imagination, I do like to buy nice clothes, but more importantly, clothes that FIT! So, I’ll go to Nordstroms or somewhere, to buy Andy clothes, then I’ll wash them and tell him I got them from a second hand store. That is the ONLY way he will wear the clothes I buy. It’s ridiculous, I know, but its SUCH a thing between us! I just want him to look nice in public, is that too much to ask? I think not.
Anyway, he knows his lack of understanding of the phrase “clothes that fit” bothers me, so he rounded up all the things he could remember me getting for him, put them in 2 big trash bags, took them to a parking lot donation box and tossed them in. I actually had no idea what he was throwing in there at first, but I figured it out pretty quickly. After that, for about 24 hours, it was a series of silent passive aggressive slights in my direction. I was LIVID. I was over it, I just wanted peace and I was sick of feeling angry ALL. THE. TIME. I hate what this cancer has done to me and how it has forced this huge wedge between my husband and I. I just want my old life back, like the one that was calm and peaceful and we were content with each other. I just want that life back!
Whatever, that’s not my life now.
So, that night, while he was ignoring me, chain smoking outside on our back patio, I decided that we were going to discuss this. I was doing the talking, he was happily watching football on his phone, trying to ignore me. But I wasn’t giving up. I sat down right next to him and I put my face about 2 inches away from his face and I was just sitting there, in his space. Sometimes I’d speak and say awful things, sometimes he’d speak and say awful things and then blow smoke in my face, and then sometimes I’d just sit there. We did this for at least an hour. It was hard, I was at the end of my rope, which is surprisingly short these days. We finally did end up talking, but there wasn’t really a resolution. It was just more of the same.
The next day, he was scheduled for chemo, so we went in, and, surprise, surprise, he didn’t qualify. That was a week ago today. That evening I thought that maybe we should start to be more positive, so I told him about an idea I had to only say nice things to each other for the whole week. If we had something that was not nice, we would just not say anything. So this week — its actually been pretty good! I sort of heard about doing this on a TV show, and it was kind of an idea in jest, but it actually did work! Things have been wonderful this past week!
Have we talked more about the incident? No.
But we also have not fought and have been totally on the same side all week! This past weekend was our 6th wedding anniversary, so I had made reservations at a restaurant about 4 months ago, and the whole evening was amazing! Since he missed his chemo last week, he was feeling really good, which I was so grateful for!
Now, hopefully, we’re back to a good pattern. We do not anticipate that he will qualify for his next scheduled chemo treatment in 2 weeks, so we’re planning everything around the 3 week schedule, just to try to stay ahead of this. But for today, his chemo is almost done and he’ll go home with his chemo-sabe box, then he’ll feel awful on Wed/Thrs/Fri and probably on Sat, but by Sunday, that will be a good day.
While not “technically” a makeup date because we did not “technically” discuss the fight, Andy did surprise me with an amazing, out-of-the-blue day date! And it was SO needed!
Last Saturday, a week, to the day, after the fight, Andy popped out of bed feeling much better. He usually does start to feel better on Saturdays, but this Saturday came with an unusual amount of energy! I’ll take it! He let me sleep in, getting up with the 5 year old at the crack of dawn, which isn’t that out of the ordinary, but either way it was much appreciated! So when I finally awoke and got downstairs, I smelled the coffee, I heard the laughter and I saw the two boys, my husband and my youngest, monkeying around. They had made a fort and although the living room was a complete disaster and all the chairs from the kitchen table were now laying upside down on the carpet, positioned underneath what looked like every single blanket in the house. It was a complete mess, but to my surprise, I didn’t care! It literally made my heart soar! I couldn’t believe the energy I was seeing from Andy! It was amazing. I bet he hadn’t felt that good in weeks! So when my mom called to tell me she was coming over to pick up the little monster and take him for the rest of the weekend, I was elated! I love my children, all of them, I love them all for different reasons and because of different qualities, but I also love when they GO AWAY! And that is nothing to be ashamed about. My sanity is WAY more important to me than any outdated and misdirected notion that you must enjoy your children every second of every day. Ha! That is definitely not me. There are PLENTY of times that I do not enjoy my children, especially the teenagers these days (rolls eyes) but to get a weekend off??! That is paradise!
So mom comes over and picks up crazy man, who is more excited about spending the night at Grandma’s than any child possibly should be, lol And when they leave, Andy and I wave goodbye, and look at each other with a snarky brow raise as if we’re pulling a fast one over on my mom and giving each other an imaginary high-five at the thought of being rid of the little dictator for a few days! WOO-FUCKING-HOO! As soon as they are out of view, we walk back in the house and Andy asks, Do you want to do something today?Ummm, Yes! I say, excitedly! I tell him that I want to workout real quick and then we can go after I shower. I sense that he has something planned and he doesn’t want to tell me what we’re doing, which is okay by me since I LOVE surprises! So that’s what I do, and by 11:30AM, we’re ready to head out the door.
We hop in the car and we head to an adorable part of the city called Clayton. I LOVE Clayton! I used to work there and I just loved being in that area! They have amazing schools, there is always a big, new, up-and-coming restaurant opening, there are parks, there are old houses with TONS of character and charm, there is a Whole Foods nearby!! Its like a dream! If only we could afford to live there, lol I’d move in a heartbeat! So, we hit this restaurant called Louie’s Wine Dive, which I had been to before, but never for brunch! So we start with some drinks and we actually never get to the food! Had I known we were going to brunch, I would not have eaten before we left, but oh well, I was happy to be out on the beautiful day with the man I love the most, just doing some day drinking! It was wonderful! Purely wonderful!
So as we’re sitting there, Andy pulls out this “license” he made for me. It was SO adorable and so thoughtful and just such a cute thing to do!! Its like when you are first dating someone and they do cutesy things for you. You know, you don’t really do those cutesy things anymore when you’re married, well, maybe to an extent, but this was like over the top cutesy! I was floored and I loved it so much!
So we went on to our next stop, a photography exhibit at the Art Museum that I mentioned I wanted to see! We spent about an hour and a half in the exhibit, just looking at the pictures and then roamed the museum for a while longer, until I noticed Andy starting to slow down. I asked if he was okay and he admitted that he was losing steam. Really not wanting this day to end, but trying to be understanding about his condition, I ask if he wanted to head back home (hoping he’d say no…) and he said yes.
So we walk back to the car and I’m a bit disappointed, but then I stop myself and start to think Why?? I tell myself that we just had an AMAZING afternoon together! Sure, it might have only lasted 3.5 hours, and yea, it would have been nice to parlay this beautiful day date into an evening dinner date, but Andy planned all of this just for me! He even drank a Bloody Mary with me! And so I started to cheer up and turned my disappointment into gratefulness. I offered to drive home and as soon as we get to the highway, he is out cold, lol Sleepy man. Side thought; I totally don’t get this exhaustion thing. I mean, the man had literally been in bed, asleep, for the prior 70ish something hours leading up to this day!!?? How could he still be so tired? I mean, I ran 2 full marathons, like the full 26.2 miles, and I wasn’t anywhere NEAR this exhausted after doing that. Cancer confuses me. I’ll never know. I don’t get it. Also, doesn’t matter.
So Andy naps on the way home and I get a brilliant idea to participate in this goofy Chick-fil-A vs. Popeye’s chicken sandwich challenge, lol Its a stupid Facebook thing that had been going around for about 24 hours. Since I’m always up for a good food challenge, I thought this might be a fun something I could do to sort of extend this day date in a home-bound way. So I drop my husband off at home and I head out to grab the sandwiches. We recorded the taste test and it was ridiculously silly! lol But it was another fun thing we got to do on our day together!
I do try to make the best of the situation and although sometimes I fall into a bit of self-pity, poor-me mentality, I really try my hardest to find the positive in the hand we’ve been dealt. I can’t change this situation. I can’t go back and make it disappear and, for the most part, I can’t effect the outcome of what will happen. So I try to live life in a positive light. I am, after all, hopelessly optimistic by nature, I don’t think this experience has changed that. I just think that sometimes reality hits you hard and forces you to evaluate or re-evaluate a lot of things.
After finishing our food challenge (Chick-fil-A won, btw) we spent the rest of our day on the couch. It was relaxing and both of us were content and happy. I had an AMAZING day and I told him so! I told him how much I appreciated what he did and that it meant a lot to me! I went to bed in a wonderful mood and I woke up the next morning in a wonderful mood! Until I realized that my husband hadn’t come into bed with me that night.
You know what that means.
He was smoking. Ughhhhh I went outside to check for ashes on our concrete patio in the backyard where he sits and smokes. And there they were. Like cold hard evidence discovered in a murder case. I immediately start fuming. I am again disgusted. So all morning I sit and stir, unsure of what to do. Do I say something AGAIN? Do I let it go? We just had an AMAZING day yesterday, do I ruin that just to say something about this? Is that worth it? He knows how much I HATE his smoking. He knows my stance and viewpoint on this. I cannot make it any clearer for him. So the day passes and I just ignore him. I do not approach him or say anything to him. I think he knew what I was upset about, or maybe he didn’t, he is infuriatingly oblivious most of the time. Either way, we go almost all day with barely a word said. In my head, all day tho, I was trying to figure out a different approach to bring this up to him. In my mind I would fabricate conversations and try to figure out what the outcome of those conversations would be. And no matter which words I used, or which stance I took, I always came to the same conclusion — it wouldn’t matter.
He is not going to stop smoking.
Not for me, not because he has cancer, not for his child, not for his life. So I decided to turn my focus inward. How do I help myself come to terms with this? I still don’t know what to do to help myself. Here I am, almost a week after that, and I wake up this morning to find my husband not in bed again. I know he smoked last night, I see the cigarette butts on our patio. It STILL infuriates me. I don’t know how to let it go, it means SO MUCH to me. But I have to stop focusing on him, and getting him to stop, and getting him to see the light, and getting him to change his ways. He has seen the light, he just doesn’t care.
Stage IV Appendix Cancer, Mucinous Adenocarcinoma 