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!
Today, was a good day! Andy and I had the first meeting with our therapist. I am not above asking for help, and we needed some help. The past couple weeks, maybe months, I’ve felt like our relationship has gone from bad to worse. At a time when we should be coming together, focused on us, being happy, and making memories as a family with my husband… all I can focus on is how awful I feel, and how that makes him feel awful. We’ve been at an impasse for quite some time. Our arguments always end in the same way, regardless of what we were attempting to discuss. We can’t seem to find common ground or even middle ground, and this problem is way above my pay grade, so I reached out to our therapist that we saw years ago.
Andy and I have always had communication issues. His thought process is just so different than mine and I struggle to understand it. When we were dating, it was tumultuous, to say the least. On, off. On, off. Break up, back together. It was a lot of ups and downs. A lot of really high highs and awful low lows. When things finally seemed to even out a bit, I allowed him to move in with me, and things were good for a few years. But all that ended abruptly after we decided to take the plunge and build a house together. We ended up putting down a $6k deposit and signing a contract to build a new home and start our new life. Turns out, he wasn’t ready for that, he wasn’t ready to do any of that. So that night, after coming back from signing all the paperwork, I was on cloud 9, but Andy? He was silently retreating. A few days later, he made a choice. He left. Literally, left. And didn’t come back. He packed up all his things, took his TV and a single piece of furniture that he had brought with him when he moved in, and he left me. I was devastated. I packed up what I could and temporarily moved in with my parents. I slept 15 hours a day, I lost 15lbs because I just stopped eating, I wasn’t hungry, I didn’t care any more. My parents took care of me for those few weeks. It was awful. Painful. I have NEVER felt that way before. I have never felt that way since. I was, for all intents and purposes, lifeless. Completely and overwhelmingly heartbroken. But I picked myself up again, once I got over my pity-party, and tried to move forward.
Everything worked out, of course, there’s a loooooooong story here, lol But we were apart for 4 months, and once we got back together, I told him that was it. I wasn’t doing that any more, I was over the ups and downs and constant gray area that we always found ourselves in. And by God, I meant it. So I researched and found an amazing couples therapist in our area, and so began the healing process in our relationship. And healing we did! Blissfully healing and in complete sync with our communication. Our differences seemed to roll off our backs and all the things we agonized over for YEARS just seemed to become a non-issue. We were married about 6 months after we got back together and we lived this way, not in perfect harmony, not nearly, but on the same page at least, for many years.
But the differences between us have become exaggerated since this diagnosis began, and its at a tipping point now where every little thing sets me off, and I end up exploding all over the people I love the most. We hurt the ones we love the most, this is true. But I can also recognize when its time to call in the big guns.
It is time.
So last week, when my husband and I were in another dead-end argument, I told him that we needed to call the therapist. He agreed. We both felt like this impasse was nearly insurmountable for us to navigate without help. I reached out to our therapist the next day. Here’s the thing. Andy and I want to be with each other. We want to be together. We both feel compelled by a force greater than us that this was somehow meant to be. I love him more deeply than I have ever loved anyone, and he feels the same way. Above all, this has remained true. No matter how mad I am at him for smoking or being impossible, no matter what awful words I say to him to try to elicit a reaction, I love him. He truly is the love of my life, and I think that is why this whole cancer situation terrifies me. I can’t imagine losing him. Again. I know what it feels like to be alone without him, I know that pain, I endured it for 4 awful months. I don’t want that pain in my life. I want to be with him. I want him alive and in good health and with me for everything our life was supposed to be before this diagnosis.
Today we met with the therapist. It had been a while since we’d seen her and we had to catch her up on what had happened. It didn’t take long for us to get to the root of the problem, and me? Me. I was in tears in no time. Andy had heard it all before, this was not news to him. Everything I had to say to her was something that I had already said to him previously. And then she asked a very pointed question and Andy, somehow, went back to the beginning. He’s adopted, yes. But his adoptive father died when he was just 8 years old. It’s a terribly heartbreaking story, but my husband actually found him. He was the first person to see him hunched over, dead from a heart attack. This type of trauma leaves a lasting impression on a child, and I believe it is the single most important moment in my husbands childhood which has shaped, for better or for worse, the emotional skill set he has now. He admitted to the therapist that after his father died, he cried once at his funeral and then again 3 weeks later, but that was it. He considered himself the “man of the house” and with that, he believed he could no longer show emotion of any sort, that was a weakness. And this is how its been ever since. As he talked about his father to the therapist, I could see his eyes well up, I could hear his voice start to crack. I could sense that he’d never truly moved past this moment. Has he ever really mourned his father? I think to myself. I’m not sure. But he most certainly has sheltered himself from that hurt…and I get it. I understand why he doesn’t want to feel that pain. It hurts. Its awful. Why go there when you can ignore it and pretend it doesn’t exist?
Why?
Because sometimes, you get diagnosed with stage 4 cancer, and you have no choice but to go there and feel that pain. But if you’ve never learned how to deal with pain, and sit with that hurt, and overcome that awfulness, you won’t know how to handle it when it impacts you again.
So here he was, talking about his father. It was the first glimmer of emotion I have seen from him in months. It had nothing to do with cancer and everything to do with his father’s death. It was raw, it was real, it was freeing. I was privileged to be there to witness it. But it was gone as quickly as it came, and before a tear could emerge, he quickly moved away from that feeling. It floated past, as, I imagine, it always does for him, and he was back to being the “man of the house” who doesn’t let emotion get in the way.
But in my mind, it was a breakthrough.
In the same conversation, when the therapist was asking my husband about how he knew he couldn’t show emotion, and he could not articulate a reason why, she asked him why then, does he know he loves me? In that breath, with a shaky voice and more tears welling in his eyes, he explained to her that fate had brought him and I back together and that he loved me more than he could express. That we were meant to be together beyond a shadow of a doubt. He didn’t let those tears slip. No. He shoved them back down, but I had a lump in my throat the entire time as I listened to him articulate these words to the therapist, and I was at peace.
More was talked about and more was said, of course, during the course of the session. I cried, he did not, but we did engage in a conversation that met every expectation that I could have had. It was real, it was raw, he was vulnerable and open. Tonight, I feel very content. We have a lot of work to do, yes, but this is only the start! To know that we have already got this far and we’ve only just begun?? Its an incredible win in my book!
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.
After the failed attempt at getting chemo last week, round 3 (take 2) this week was successfully administered. As a very good friend and neighbor pointed out to me today, we are 1/4 of the way done! Wow!Great perspective, I told her, and it was very welcomed today as I’m struggling a bit through some extra sensitive emotions.
My grandmother on my mom’s side died a few days ago. She was very old and died not because of some terrible disease that she had struggled with for years, not because of infection or a fall or some awful tragedy. She died because it was her time. She was surrounded by all her children in a quiet peaceful room. She hung on for way longer than the doctors thought she would, as my mom put it, She’s a tough old bird! And she was. She was loved and will be missed incredibly, she lived a good long time. But all this got me thinking, Shouldn’t we all be so lucky? To die without pain, at an old age, after a good run at life, surrounded by those we love. Everyone deserves that.
This week has been a rough one. My sons 5th birthday party was such a success, but I don’t know if I can adequately describe the fight my husband and I got into the night before the party. I admit it, my emotions run high during holidays and birthdays. Add this on top of the cancer treatment and the passiveness I’ve taken on over the past 3-4 weeks in an attempt to keep everything very calm and not create any undue stress for my husband. I hit an inflection point and I knew I was going to blow my lid. Not just that, but the fact that I still can’t get my husband to talk to me about any of this! I am still convinced he is in deep denial, and as I’m trying to work through this, he remains unphased and completely disregards any real or raw emotions I try to bring to him. Do you know how unbearably maddening it is to have the one person who understands exactly what you’re going through just up and refuse to talk about it? He makes me feel like I’m a complete lunatic! While he remains calm, joyful even, as he is making appointments for chemotherapy (poison) and scheduling all this shit that NOONE should be happy about. He just happily whistles a little tune and carries on like everything is fucking fine. Meanwhile, I am trying my best to maintain normalcy and pretend (for him) like things are fine. Well things are not fucking fine. And I just couldn’t take it any more. So that night, the night before the party, I let it all out. All the dirty laundry that had been piling up for weeks, I was airing it ALL out. The vitamins that he was refusing to take, but was blissfully still smoking cigarettes. (While on chemotherapy. For cancer.) The fact that he adamantly denies he’s in denial about all this. (Isn’t that, like, the most classic symptom of denial?) The fact that he WON’T talk to me or listen to me about any of my emotions. He is SO disconnected that when I attempt to have an open and honest conversation with him, he tells me I’m making it all about me, and gets up, and literally walks out of the room. It makes me feel completely disregarded and insignificant and like an absolute basket case because I NEED to talk about this! Then I’m left second guessing myself, like, Am I making this all about me? I mean, yes, I am an asshole some of the time, but I feel like I’ve truly turned a corner in that regard. And, while I admit, I am the one that needs to talk about this, and he might need something different. Even so, this is definitely not all about me. But it is also not only about him.
It was late at night when this all erupted. In that moment, I was literally fuming. We had actually had a pretty calm conversation earlier in the day as I could feel I was almost at my boiling point. We sat down across from eachother, he talked, I cried, he attempted to listen, and when it was all said and done, we had a list of to-do’s. I had had a conversation with a friend a few weekends back and she mentioned something to me about asking him how I could help him. This all came about because I beyond frustrated that everything I was doing in an attempt to be helpful and useful was being met with resistance or was being thrown by the wayside in some form. So my friend asked me if I had asked him how I could help. I had not, but I thought it was a good enough idea and decided I had nothing to lose. So I asked, and out of that came this “to-do” list, so to speak. It consisted of him agreeing to try to be more aware of when I was struggling and taking initiative to offer me reassurance during those times (for example, him seeing me struggle, coming over to me and saying something like, I see that you’re struggling, how can I help?) and me, agreeing to ask more direct questions on topics or feelings I’d like to discuss (for example, me asking things like, If you were to tell someone who was just diagnosed with cancer how chemotherapy felt, what would you say?) So now, although I have no background as an investigative journalist, I somehow have to become an expert at formulating the right questions and asking them at an appropriate time just to get my husband to tell me about how he is feeling. Ughhh Whatever. I was not happy with this setup. Just more of the mental load for me to shoulder. Why was it solely up to me to draw this out of my husband? Why couldn’t he just offer this up to me like some little glimmer of a normal reaction to a stage 4 cancer diagnosis? Nope, I don’t get that. That is not my life.
Yea, I was not happy with this setup. So, as we were running around getting the birthday cake and picking up last minute decorations for my sons 5th birthday party, it stirred in me. All I could think about was that he just gets to live his life like normal, and if I wanted any sort of connection with him about this, it was up to me to make that happen. I was furious! How could he do that to me! I have literally given up EVERYTHING to make him comfortable! All my energy, all my time, all my brain power, all my focus, every effort I put in to researching doctors and hospitals and vitamins and procedures and creating a log of medications and his reactions to each. The backseat that I’ve taken at my job, with my own children, with my friends. Literally EVERYTHING has been put on the back burner and all I ask is for a bit of real vulnerability from the one person who I love most in this world, the one who knows exactly what I’m going through! I couldn’t take it any more, I was completely done. It was ALL weighing on me.
And I let it out.
Have you ever heard the saying that no good conversation happens after 10pm? Its true. It was probably midnight, I was outside screaming at him in our backyard, likely with neighbors listening. I didn’t care. He was chain smoking cigarettes, and that was just the icing on this shit cake. I told him everything. All the things he didn’t want to hear. All the awful statistics that he refused to read or know about. I told him that the reason I was SO upset was because I didn’t want him to die. And I didn’t! I DON’T! That is the absolute truth! I told him that I didn’t want him to fall into the 62% statistic for those who are dead 5 years after this diagnosis. I told him that all these things I was doing, all the research, all the vitamins, was because I wanted him to LIVE! And he was taking all that and just throwing it out the door, and SMOKING on top of it. Which, if you don’t know, is AWFUL for anyone with cancer, not to mention those that are actively on chemotherapy. Srsly. I told him that he deserved to feel like crap after his chemotherapy treatment and I hoped he did. And I meant it.
And I felt awful.
Guess I am still an asshole after all. It was another one of those moments that I am not proud of. It was a hard night. Its been a hard week. This whole thing has been hard. We both said things that we regret, well, at least I know I said things I regret, we haven’t actually talked about that night. I have a feeling we’d both just rather forget it happened and move on. Sometimes sorry just isn’t enough.
So we got the chemo box off today, and right on schedule, my husband feels like crap. The diarrhea is back with a vengeance and his energy has completely tanked. At least when he’s so exhausted, he’s not on the toilet! There’s a bright spot, lol He’s had a bit more nauseousness this round, no actual puking yet, but he just feels queezy. That’s not fun. This is only round 3. I cannot believe we’re ONLY on round 3!! Why do I feel like time is just creeping along? I feel like we may NEVER get to the end at this pace! We might kill eachother before then.
I think I’ve heard that one before. It was funnier when it wasn’t actually my life, lol But legit, I ran into Andy’s oncologist in a bar last weekend! No, I didn’t say anything. If you recall, Andy and I don’t really love her, so no, I didn’t say anything when I saw her. But I’m 100% certain it was her, lol I wish that story had a funnier ending.
As I predicted, we went in for Andy’s chemo treatment #3 on Monday and his absolute Neutrophil count was again too low. It was 0.8 this time, we need it to be at least 1.0 to be eligible for chemo. I hate it when I’m right about these things. –No I dont. I actually love that I can predict and anticipate what is happening here in reality while Andy frolics in lala land. In some weird way, it feels like some sort of credibility or something. Cancer street cred.
Yea, I’m cool.
Anyway, Andy received the Neupogen shots. He had his first shot on Monday, second on Tues and he finished off the series today. He crashed Monday night, Tuesday he attempted to cut the lawn after he came home from work, but came in half way through saying he was exhausted. (Yea, dummy. Why did you think you could cut the lawn? Just another project started by my sick husband who thinks he has the energy to do things as normal, but fails miserably at follow through on just about everything he begins these days. Add finishing the lawn to the top of the list after cleaning out the garage, power washing the driveway, replacing our front door bell, mulching the landscaping and staining the deck. … Guess who’s left to complete/clean up/finish all these projects he begins and is too exhausted to end? Yep, me. Guess how I feel about that?) So today he came home from work and went straight to bed. Lovely. Another night alone. Just me and my glass of wine! At least the dog is content with my husband being in bed 75% of the time. Note the bruise on the backside of his arm. That’s from the Neupogen shot. Since he has no white blood cells, he bruises really easily and anything he brushes up against turns into a bruise immediately. So a needle poked into his arm? It’s a bruise. It’s awful, but it’s reality.
I should stop complaining because really, things have been okay recently! We are happy to have another week off of chemo, tho I was concerned about these Neupogen shots, just another unknown, but they haven’t been that bad. The side effects are just more exhaustion than physical symptoms, which I will take 100 times over seeing my husband in pain. I cannot take it when he’s in pain! But now that we are through the shots, I feel like I can breathe a little bit. We have our 4 year olds 5th birthday this weekend, (side note, I guess I’ll have to stop calling him “the 4 year old,” lol) so I’ve been deep in party planning mode for about a week and a half. I LOVE planning parties! I feel that small details make all the difference and I try my hardest to make birthdays special for the kids! Even the awful teenagers, lol Our almost 5 year old (see!!??) is very much into Mickey Mouse right now, so I am planning a Mickey party!
I’ve been trying really hard to keep busy. I finished a window casing project that was on my really-want-to-do list for about 3 years, and then I had a wall stenciled to top it off! I mean, it looks AMAZING! And I look at it everyday from my office chair, so I really get the opportunity to appreciate all the hard work I put in! Every time I glance that way, I get this warm smiley feeling. Since I work from home, I see a lot of my house, so small changes in the mundane scenery make a HUGE impact on my entire sense of well-being! Might be bizarre to hear, but, my dining room makes me SO happy!
Speaking of work, I’ve been included in our bi-weekly leadership meeting. Possibly by accident or with the intention of it being temporary, connected to the P1 initiative, but my invite hasn’t been revoked, so I’m happy to get some face time with the big dogs! I work with some SMART people. Like, literal NASA rocket scientists, and I am humbled to be included in that mix. I’m not of the school smarts background, but what I do well, is people. I’d put my people skills up against any of our top AE’s or PM’s in my company. I have a way of connecting with people, regardless of their background, and finding a common link to launch a relationship off of. I can also fake the talk, not really “fake,” but I don’t actually have a full technical understanding of a lot of the things my company delivers, but I know the jargon, and I know when and how to apply that to a conversation. And that, my friends, is what makes me a good people person! Regardless, I’m including myself in the leadership team and I am going to seize every opportunity I can to inject myself into the conversations and projects that come up. Until I am told to leave, I will stay and prosper! We’ll see how long this lasts, lol
I’ve also been keeping up with my macros and my exercising. This really keeps me grounded and helps my anxiety tremendously. I wish there was some way I could convince Andy that exercise and eating healthy are important for him, along with taking his vitamins … which, he has recently been refusing to do. Its infuriating beyond explanation, but I’ll spare you the 2 hour conversation that I’ve subjected my best friends to about vitamins, and leave it at this; I will not stop trying. I can’t. I care too much, I love him too much to just throw my hands up and say Fine. You win. Nope. Because doing that would basically be asking me to go against everything that I am. So nope. That’s not who I am. That’s not who I want to be. That is not what I will become. I will stay the course. I will fight against all the odds for my husband. I will spare no expense so he can be well. I will exhaust all options. I will continuing researching relentlessly to explore ways to minimize the effects of the chemo or to find other treatment options if need be. I will not rest until this whole situation is just a bad memory in a series of amazing life experiences that we look back on when we are 85 years old, sitting in our rocking chairs, on our front porch, watching the grand kids play.
Last week was supposed to be Andy’s second round of chemo, but when we went in, his white blood cell count was too low. Fun fact: you have 5 different white blood cells that make up your white blood cell count, the one that is most important is the Neutrophil count. The Absolute Neutrophil count, or, ANC, to be exact. This is the one that makes up about 60% of your entire white blood cell count. So when that one falls off a cliff, the rest of them don’t really matter. A normal count is between 6.4-10.6. Prior to chemo, Andy’s was already on the low end of normal at 7.4, but when we went in for his chemo last week, it was at a dismal 0.4. The minimum threshold needed to administer chemotherapy is 1.0, so we were sent home and told to reschedule the chemo session for the following week. This was disappointing to say the least, but we tried to put a positive spin on it, rationalizing that it was a welcomed extra week “off” from the chemo. This was a lie, of course, but we were both happy to ignore the fact that this was likely a problem we were going to have to face over and over again. Dr. Galsgow totally called it when Andy was in the hospital with his bowel obstruction. He mentioned that his ANC was really really low. At the time, I was just taking note of it, but now, its a thing. Its a whole thing.
Lovely.
So home we went, happy to have a week off, frustrated that all we could do was wait. MORE waiting! Ughhh I hate waiting.
So we waited, and it was actually kind of nice! Things were pretty good that week, Andy felt great! We went out to dinner, Andy took our 4 year old to the movies and to the magic house, we got ice cream. It was just really nice! Everyone kept asking me if my husband was too weak to do things or if he was in some way bedridden because his white blood cell count was so low. No. That’s not how it works. But I can’t blame them, I would have thought the same thing if I were in their shoes and not mine. These little details are not really something anyone knows about, nor should they be. People think that just because he has cancer that he should be “sick” all the time. But, he’s not. He’s just, normal. He is taking it easy, yes, but that is moreso because of his ongoing tummy troubles which have little to do with the chemo whatsoever. –Okay, the chemo is exacerbating the tummy troubles, but the origin of the issue is not the chemo, it’s the right hemicolectomy. So we just carry a lifetime supply of Imodium AD and Lomotil on us at all times, lol It’s really not that big of a deal. It sucks, sure, but this is our new normal.
So we went in on Monday this week for round 2, take 2. Luckily, his white blood cell count had come up to 1.2 which is just above the threshold to allow them to administer the chemo, so he was able to receive treatment, but just barely. This makes me nervous. We really only have one choice if his ridiculous ANC doesn’t start to figure this shit out. Neupogen shots, a series of 3, given over 3 days. These shots stimulate the bone marrow to rapidly make white blood cells — you know what that feels like? The flu. Yep, side effects from the Neupogen shots are bone pain and flu like symptoms. Chills, aches, bone pain, cold sweats, low appetite, drowsiness, lethargy. You know, the fucking FLU. They give these to him on his off week. So here’s how this 2 week cycle would go:
Monday–> Chemo starts, chemo pump hooked up, steroid (feel good) shot Tuesday–> Chemo pump in full force but otherwise a good day Wednesday–> Chemo pump disconnected, IV fluids administered, starts to feel awful Thursday –> In bed all day, feeling awful Friday–> Starting to feel a bit better Saturday–> Good day Sunday–> Good day Monday–> First Neupogen shot, feels like he has the flu Tuesday–> Second Neupogen shot, feels like he has the flu Wednesday–> Third Neupogen shot, feels like he has the flu Thursday–> Recovering from Neupogen shots, feels like he still has the flu Friday–> Starting to feel a bit better Saturday–> Good day Sunday–> Good day
rinse. repeat. for 20 weeks.
How’s that sound to you? How would you feel if you knew that in the next 6 months, you would only feel good, like a normal human should, for about 40 days? 40 days out of 6 month time frame. 30% of the time you’d feel okay, not even good, just okay, the other 70% would be awful. How would you feel if you knew that? It makes me nauseous that my husband will have to endure that just for the opportunity to be able to receive POISON. Maybe I’m being overly pessimistic here, maybe I’m just trying to deal with the crazy amount of loneliness that all this has thrust upon me! Because while my husband is going through all that, sleeping for days at a time — what am I doing? Life. That’s what. Back to school shopping, lunches for the kids, dealing with tantrums from the teenagers and the pre-schooler, chauffeuring the kids around, working full time, picking up, dropping off, cooking, drinking, spending most evenings watching TV. Alone. Doing all of this alone. Now, don’t get me wrong, I do love some alone time, but this cancer business? Its lonely work. And its not just that, its the fact that even my closest friends cant fill the void. And, to make it worse, there is nothing I can do to make it better. I can’t lay with my husband and cuddle (would you want to be cuddled with when you have the flu?) I can’t give him a pill to help him feel better, I can’t cook him something, I can’t say anything, I can’t do anything, I just have to sit back and watch him suffer. And with this round, he is suffering. His tummy troubles have been extreme this time. Nausea is starting to become an issue as well. The nephropathy has definitely reared its ugly head. For example, Tuesday morning, he went to take the trash bag out of the can in the kitchen, a silly, mundane everyday task, something he’s done every week for years because Tuesday is trash pick-up day, and I could see him struggling to get the bag out. He was trying to grip the bag and kept clinching his fingers up, pulling back, because it was painful to touch anything with his fingertips. So he was using the insides of his fingers and his knuckles to grip the bag, wrap the tie around it and pull it out of the can. I wanted to offer to help, but I also didn’t want to make a big deal out of it, knowing all this had to be weighing on him too. So I didn’t let him know that I saw the struggle. He managed, of course, but it was painful just watching him attempt this simple task. So there’s that, along with the cold sensitivity and bone pain, which he already has. Every time he bites into food, he gets this intense pain in his jaw and he has to chew very slowly. It lessens after the initial bite, but it’s still a struggle. The exhaustion, sure, but that actually has not been that bad this time, but the diarrhea, ughhh, the diarrhea! Obstructive, invasive, sudden, explosive, life altering, embarrassing, dehumanizing, stomach churning, uncontrollable diarrhea. It has worsened, and his stomach is constantly in some state of upset-ness. That’s the worst part. I would be okay with all of this if he wasn’t in pain, but he is, and that makes me feel absolutely awful. And helpless.
On the up side, he did go into work this morning. He is convinced that since he felt good on Friday for his first chemo round, he will always feel good on Fridays. Well, not necessarily, lol But I’m not going to be the one to tell him that! He lasted about a half day, and is at home now in bed. My husbands outlook on all of this amazes me! Its such a change of place for us, me, holding it down here in reality, while my husband is blissfully optimistic about everything! All our lives its been the opposite. Being a realist sucks, I hope it passes with this cancer situation.
So now I’m looking towards his next round of chemo. I am finding it so hard to be optimistic about his ANC numbers. The reality of the situation is he went from 7.4 to 0.4 in round 1. This round, he didn’t start at 7.4, he started at 1.2, so who knows how low his numbers will be when we go back?? This terrifies me! I do not want him to have to go through the Neupogen shots! Our oncologist did say that sometimes the body does find a way to regulate itself, so all hope is not lost. But I feel like with our luck? That is just not what will happen here. But who knows?
Stage IV Appendix Cancer, Mucinous Adenocarcinoma 