Today is the anniversary of Infusion Day Round 4. Ugh. That was a rough day. I felt so defeated. I had some significant progress behind me that I could cling to and sort of celebrate, but I felt like I was in the dog days of hell…with all of its endless pain and suffering. Each round up to that point had been different, dashing any of my hopes that something, anything would be predictable. The only thing to bank on was that this, too, would be different and my assumptions held true that it was. And not only was it different, it was just getting worse. By the time Round 4 came around, the 21-day cycle of each round had gone from days 3 – 9 being tough in Round 1, days 2 – 14 being tough in Round 2, days 2 – 17 being tough in Round 3 (with a dreadful chemo-laden-wanna-die-can’t-eat-Thanksgiving to boot) that I had no hope for having any good days out of the 21 in Round 4. And being so desperate to meet Jesus only 4 months into this hell was the lowest I’d ever been in my life. 

And it was sometime in those dreadful 21 days that I came to realize something…something that totally and completely and forever transformed me…anything, literally everything, good or bad, easy or hard, glorious or wretched, celebratory or devastating was a win-win. I could open my eyes and be on heaven’s side, seeing Jesus’s face looking back at me or I could open my eyes on earth’s side, seeing my people’s faces looking back at me. I win if I go. I win if I stay. I win if I die. I win if I don’t. I win in the glory of heaven. I win in the grind of earth. ALL of it, EACH of it, EVERY PART of it…purposed.

To be so close to kissing Jesus’s cheek – so.very.close – can’t not change a person. It’s hard to put into words how. . .

*Post 985

A Whole New Level of Vulnerability :: 12/11/17 :: Post 105

There is such vulnerability in this storm. I have felt moments of my own personal vulnerability, I have felt moments where my marriage feels vulnerable, and moments where I am vulnerable IN my marriage, I have felt moments where parenting is vulnerable, and moments where my daughters are also in vulnerable places. I have experienced times that my relationships feel fragile due to this vulnerability…where eggshells crunch under my feet. There have been times that I have felt vulnerable at work, in meetings, in difficult interactions. And vulnerable even while walking down the street or being out and about. 

Many could probably nod their heads while reading that list seeing as those seem pretty basic to life. And I’d say these have existed for me all along… But the vulnerability that has come with battling cancer has taken these to a different place. So palpable. So raw and scary. So “threatening” in a lot of ways. So life and death. 

And that is not over-dramatic. It’s my reality. My life and my death….having to look at both at the same time…. Death isn’t just “something that will happen someday” because now it’s proximity is much closer and I’ve had to see it much clearer. Whoa.

This reality alone makes me feel like I have a gaping open wound on my chest (oh wait, I actually had that it the literal sense, too…….) and trying to survive any way I can. Vulnerable to the core.

Specifically today, the vulnerability felt like it was surrounding my family and my marriage. I feel like we are in the trenches…we’ve already been through so much, we’ve survived a lot of really really hard stuff and it’s come at a high cost – we are all tired and weary and vulnerable to the devil’s temptations to lose sight of hope and the strength to endure….because as far as we’ve come, we have so much left. 

Parenting is hard. I have to discipline with a bald head. That’s an odd vulnerability that I didn’t see coming. But I feel like I can’t be taken seriously without hair. I know that’s not truth, but it’s how I feel. There is also a fear in that the girls will see my baldness and begin to resent me with cancer. While they are in a vulnerable place of being held accountable, learning humility, and experiencing guilt, it would be easy to place the blame on other things…and then the bitterness grows. I don’t want that. Parenting also takes effort. Every.Day. Effort is hard to come by and when I’m tired, I am emotional. Showing emotion is vulnerability and there is uncertainty in how my girls experience my emotions – is it good for them? Do they understand strength in emotion or do they consider it weakness? Uncertainty is also vulnerability…and there is a lot of uncertainty in parenting. 

Marriage is hard. There are places we have had to go that we have never navigated before. In this massive storm, we are in unchartered waters. It’s hard to see where you’re going and what is needed to survive when you can’t see past the crashing waves, tipping boat and no sign of land. Chris has to overcompensate for my lack of energy…Chris has to try and force me to eat when I want nothing to do with food because while he hates what food does to me, he also know I get worse without it…Chris has had to force me to drink water and liquids in any form because he knows without hydration, I end up in the hospital…Chris has to try and provide hope and comfort for when I feel hopeless and in despair…Chris has to watch me closely for signs of depression as I am predisposed to it, and then he has to figure out how to bring it up so as to not send me into a spiral…Chris has to put his own needs aside, often, because as much as I try not to, I can’t see much past myself and surviving…Chris has to drive me. Everywhere…Chris has to get a nutrition degree just to know what is good and bad for my system as we battle a life-threatening disease…Chris has to find ways to fill his own soul so that he can keep doing what is needed to keep us together. And then he has to know how to deal with my emotional breakdowns because I can’t…Chris has to go to work and support our family…Chris has to do the vast majority of bedtime routines because I am asleep by 8 most nights…Chris has to do the vast majority of morning routines because it takes me forever to get ready seeing as I have to do everything slower than before…Chris has to hear me answer doctor’s questions about bodily functions that are far from sexy…Chris has to sit in the same room with me while I sob my eyes out because I can’t see surviving the next moment…Chris has to find his own way to express emotion…Chris has to figure out how to communicate his needs to me when I can barely take care of myself…   

I’m so grateful that while Chris doesn’t have to do any of this, he chooses to. And while I’m beyond grateful, this sentiment, in and of itself, sends me into a spiral of emotional turmoil because I can’t see any of these things getting easier or me having the ability to make them not exist. And we have a lot left to navigate blindly.

Vulnerability. On so many levels. Levels I could have never predicted. Levels without prescriptive answers. Levels that require participatory presence in order to embrace the intended purpose. 

The bottom line is that life still happens while in this storm. Kids still make bad decisions. Husband and wife still have to communicate and navigate conflict. Parenting decisions, simple and difficult, still have to be made and the follow-through, essential. Work still has to be done and responsibilities still exist. Walking down the street is still a part of life even when I’m in a compromised state. Going places is still required even though germs and sickness are ever present but significantly more dangerous. Relationships still necessitate investment because they are vital to the survival of such a storm.

In all of this – vulnerability. 

Alternate Reality :: 12/11/18 :: Post 455

To describe some of what I feel …..

To help others empathize with this journey  …..

To communicate commonalities in experiences so as to create connection …..

Imagine waking up one day and being shoved, against your will, into a portal to another dimension. The spinning, the disorientation, the fear, the out-of-control chaos that comes with the molecular disintegration and reconfiguration of your being. 

And then coming out the other side of the portal totally different…you feel different and you’re in a form you sort of feel familiar with but it’s foreign and uncomfortable. You look different in some ways but still sort of look like you….like something went really wrong with the reconfiguration of your disintegrated molecules. You see your surroundings, which are oddly similar to the way it was before, but everything around you stings your soul and singes your heart. You have all the same people and all those same people behave all the same ways but you feel like you just met them, yet at the same time, you experience deja vu because this actually isn’t the first time you’ve met them and you have this bizarre sense that you know them….and you know them well. 

This dimension is a stark new harsh reality that is so abrupt that you haven’t had time to even make sense of where you are, what kind of ground is under you, if you are actually still spinning (and spinning so fast it feels like you’re standing still), and you have no option to leave. You’re stuck in constant discomfort and discombobulation. You don’t feel confident in your next step cuz you don’t know if you’re spinning or on solid ground. And everything, E V E R Y T H I N G, has been rearranged. 

Can you feel it? Can you imagine? Can you connect with a time you’ve experienced something similar?

Living Changed Head to Toe Day 11 :: 12/11/19 :: Post 819

Chris and I were talking the other day, I think we were on our way to or from my surgery or post op appointment, about the fact that a large portion of my body has little to no surface sensation. At the beginning of all of this, we were so focused on getting the cancer off that even if someone had told me of the nerve damage coming, I may not have even heard them. And then I woke up from my mastectomy and thought it very strange that I had no feeling in my entire chest area and in the whole back of my left arm. 

It wasn’t until after the cancer was off that the devastating reality of ALL that went with it hit me hard. Another tension of relief and deep grief. And then my subsequent 8 reconstruction surgeries have perpetuated similar tensions – life being brought back by way of borrowing other body to make body but at the expense of damaged and erased nerves in those areas borrowed from. And just to add a cruel irony – I can’t feel things on my skin that bring about goosebumps, you know the feelings…but I can be driven mad over an itch that gets no satisfaction from scratching. Go figure.

It’s amazing, once again, what we take for granted when things just work. And it’s amazing to me what value feeling and sensation bring to life. 

I wish I could go back to before, when my nerves worked and I could feel sensation on my skin. I would have cherished the sense of feeling more. I would have hugged more. I would have soaked it in like a sponge. Don’t get me wrong, I still feel loved when I get hugged, cancer didn’t get to take that, but hugs don’t feel like they once did. A very sad thing, indeed.

Living changed, head to toe, day 11 – my skin and what it feels: While I can wish all I want to reverse time, I will never get to go back to the way it was. I have to learn to accept my new reality. I have to find new ways to bring about that goose-bump-ily feeling that I took for granted. And I have to still seek out touch because it still matters, even if I can’t feel it.