In a nutshell........

"They're admitting me for the night. Apparently I have mestases in my lungs and one is bleeding. There's no concern that my lungs will fill up, but they are going to talk to [oncologist] in the morning about possibly seeing a pulminologist."

This is the text that I received from C at 12:24am Tuesday morning.  We had debated then decided he should go to the ER Monday night following the "coughing up" of marble-sized blood clots.  Most would ask why there was a question in the first place, after all, that isn't normal. The reason was twofold, first it had happened a few weeks prior though shorter in duration then went away, and second, when we asked the doctor, they felt it was an ENT issue.  There wasn't any pain associated with it, it felt as though it was coming from his throat not his lungs.  However, that night they sent him for a CT Scan and discovered many "little marshmallow sized spots" peppering his lungs.  Being that C has metastatic prostate cancer, the immediate assumption is that the cancer had spread further into his lungs.

Following the initial diagnosis from Monday night, he has undergone further tests including a bronchial scope and biopsy to pin down what is going on.  Unfortunately, the results have been mixed.  The initial scan shows pneumonia, yet C has had no symptoms.  The scope didn't find any tumors, and was able to see that the bleeding had stopped..... yet still didn't find a reason for the initial bleeding. The biopsy will take awhile to come back.  Our next steps on the cancer front hinge on those results, and we'll deal with that when/if it comes.  Our frustration now is not knowing why these clots are coming up in the first place.  He continues to cough up clots, though they are infrequent and smaller in quantity.  They are still determining when they will feel comfortable letting him leave, we are hopeful for the weekend, the doctors can't seem to agree on what the criteria will be.  So we are in limbo.

This information feels like yet another sledge hammer hitting us in the gut.  C has had no new pains, in fact he has felt good enough to finally commit to traveling to TX for Thanksgiving, which we have had to postpone.  And even throughout his stay in the hospital, he hasn't had any pains aside from the typical ones he has had all along.   

Hopefully we will get answers soon and C home sooner.

The Surreal Life

It seems like there hasn't been a lot to update about, but then I realize it has been because we have actually adjusted to the new routines and way of life.

C now drives out to his office on a fairly regular basis, he is able to start taking on tasks out in the yard, we take the girls to the various activities and events, we were able to travel to Chincoteague for a family vacation, my focus is slowly beginning to shift to homeschooling the girls and their fall routines and activities.  We are starting to look at flights to TX so that we can visit family and friends this fall, even talking about plans for next year.  Sometimes it seems like we could pretend the last 9 months haven't happened, except for the little changes that from the outside no one would notice.  

Little changes like I now drive everywhere we go as a family, when C gets up in the morning he has to sit for awhile with his blanket draped over his shoulders while he stretches and lets his pain medicine take effect, the time he is able to spend working on the house or yard takes a toll as he exhausts easily, the majority of our adult conversations are about his pain levels, inquiring whether or when he took his meds, or the latest in the research either of us have done regarding prostate cancer and it's treatment.  Our wonderful neighbor has taken it upon himself to mow our yard on a regular basis, taking that very time consuming task off of C's plate and allowing him to focus on other things. After we accepted the reality of him not being able to ride his motorcycle, including looking at bending the rules and finding one that has a sidecar that would give more stability making a fall even less likely, we seemed to hit a good place.  It has been a long time since either of us has needed to break down in tears to let the sadness, anger, and frustration out.

Of course it seems like there is a perpetual dark cloud over it all, no matter how good he feels, the blood work always seems to give us something to fret over.  Whether it is low iron levels, or not low iron levels, other levels that we are told not to worry about, but never sound good, and his ever-fluctuating PSA, fire drills seem part of our routine as well.  The current one is after a long stretch of his PSA staying in the low to mid 1s, the last two readings from separate labs showed the number going back up. 

So now I write this post while waiting for C to be called back for his CT scan here at NIH, our appointment with the doctor following his bloodwork, EKG, scans will tell us whether we will start the study today or if it still too early in C's treatment.  This is the roller coaster that makes my stomach churn.  On one hand you want them to tell you the current treatment is still working and to check back in a couple of months, on the other you want them to have the answer, that there is some miracle that will come of this study that will put a true end to this nightmare.

A Fight I Didn't Want to Win

"How big is your head?" was the subject line of the email I received from C the day after we first went out on his motorcycle.  We were just friends at the time, but I had started to develop a crush and enjoyed having some time alone with him.  When I saw that email, my heart dropped and I wondered what I said or did to give a bad impression.  When I opened it, he was literally asking how big my head was as he wanted to get a helmet that would fit me since the spare one he had was ridiculously big on me.  He enjoyed teasing me, but underneath the joke was a move towards a relationship that would see us on the bike more often than not.  We went to friends' parties, family events, the Renn Faire, bike rallies, joy rides..... he allowed 'his' thing to become 'our' thing.  

When we got married and started thinking about children, many people asked if I was going to make him give up his bike.  Honestly, I couldn't imagine asking him to do so.  It was his fun, his freedom, his time to be alone with his thoughts...... and I loved being along for the ride.  Of course there was always a concern that something might happen, but it was a risk that we accepted.  With this diagnosis hanging over us like a guillotine, C has been looking forward to getting back on the bike.  He has been feeling so much better lately, cutting down on pain meds, waking up some mornings with no pain even.  Feeling good enough to start taking it to work on nice days, maybe even going out on the weekends like we used to do.... another move towards trying to find our old normal in the middle of this new one.  

We don't typically fight, especially over things like this, but when he started talking about taking it to work, I asked him to check with his doctor.  C didn't think it was an issue, resented having to "ask permission" and completely shot down my request.  It wasn't a pretty conversation.... but I think we both knew where the other was coming from.  He wanted to feel normal again and get back to things he enjoyed, as much as he can, for as long as he can.  I fear something happening to him that causes even more pain to him and our family.  We dropped it as his mind was made up, and I don't really enjoy fighting.

The doctors at NIH are still encouraging us to consider a study, so after our last visit we wanted to talk to C's oncologist before making any decisions.  Today we went to the doctor with the list of questions that we had that would clarify whether the study was a good option or still premature..... I added the motorcycle question to the end of the list.  A passive-aggressive move, I'll admit it, but figured I would plant the question if C decided to ask.  After a lengthy discussion about the study, C decided to humor me and did so.  Unfortunately his doctor, after getting over his disbelief that we were seriously asking this question, said that he was not comfortable with him on the bike.  Because of the damage the tumors have done to his bones, a fall from the bike could be very traumatic and recovery from such a fall would be much more difficult.

It is yet another thing this cancer has taken from us.  It isn't just about this vehicle, it is what it represents to him, to us.  Our relationship started on that bike, we learned to trust each other on that bike, our daughter K is so excited at the prospect of being on the back of daddy's bike..... 

It's just one. more. thing.

Scabs

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. ~ Deuteronomy 31:6

This verse popped up on my Facebook feed just before I decided to write this post. It struck a chord with me as we are preparing for a very long, very likely stressful day at NIH tomorrow. With the doctors ringing alarm bells over one data point that went the wrong direction.... it feels like November again. C is set for blood work, an EKG, a CT scan, and I can't remember what else. With all signs in our day to day life showing signs of improvement, this one PSA reading threatens to tear down all the healing and acceptance that we have built over the last couple of months.

The huge open wound that has hit our family has slowly been covered over the last few months by family, friends, baby T, schedules, and a marked improvement in C's pain. It has been scabbed over by the acceptance that we cannot control what has happened, but we can fight this through every avenue that presents itself. We can distract ourselves by living as normal a life as we can, finding joy in our time together as a family, and taking things as they come instead of anticipating them.

Tonight we take some comfort in our decision that tomorrow's tests will give more information on what the current state of my husband's health is as more information can only benefit us, we may even qualify for the study they have suggested, but we walk in with the plan of taking our time and not jumping head first into anything without careful consideration...... that our desire for my husband to be as much an anomaly in his recovery as he is in his diagnosis will not cloud our judgement or rush us to any decisions. I just pray that the tests prove the doctors wrong and that C is still on a good track with his current treatment, that we have more time to get used to our current normal before we have to shift gears once again.

Roller Coaster

It's funny how I have one idea of what I want to write at the start of the week and by its end, my thoughts are so different. I tend to write my posts in my head before I commit them to "paper", I had this week's done until another curveball was thrown Thursday afternoon.

My original post was going to reflect on how my thoughts and opinions on other people's behavior had changed. How we see adults have temper tantrums all the time..... the crazy coupon lady going off at the checkout clerk at Wegman's, the customer who had something wrong with their meal taking it out on a waiter while out to dinner, and yes, those moms at the playground. I usually roll my eyes and ponder why they feel the need to overreact to what appears to be the smallest infraction, occasionally meeting the eyes of another who is probably wondering the same thing. Then while at our second visit to NIH this past Monday, I finally understood. A lady who was accompanying her parents, one of which was clearly the patient in need of the services offered there, was having a meltdown over getting an extended visitor badge. Lashing out at anyone and everyone she could, including her parents, she yelled "don't you understand?" To the man behind the counter. And yes, yes I did. Watching the reaction of the others nearby, they all did too. Dealing with everything we have, it has been all I can do not to be this woman, to keep it together especially in public. In that moment, I was thankful I was past that stage, or so I thought I was but after the return call from NIH, I want to have a temper tantrum of my own.

Things this week have been pretty good, C worked in the yard both days of the weekend.... Sunday's work was accompanied by friends helping and visiting. We drove down to NIH on Monday, followed by two days of him driving into the office..... without him having any real complications or pain flare ups. The doctor at NIH said everything was looking good and we scheduled a follow up for July. I started thinking of closer-by vacation spots that we might try to get away to this summer, thinking we may make it to TX to visit family for the holidays, I let my guard down and allowed myself to dream of a "normal" life....... then we get a call.

There was a small fluctuation, or what sounds small to me, in C's PSA numbers..... this time in the wrong direction. The doctor called, more concerned than we thought he should be over this single reading, now 1.49 from the 1.09 we had before. But apparently a change of that amount in just three weeks makes them want to look closer. So after riding the wave of calm, now we are back to more tests and scans, and waiting, and fear, and hope, and so the roller coaster takes up speed for another round.

The New New Normal

Overall, this week has been a really good week.  C got his blood work back from NIH, and his PSA is down to 1.09, normal is anything below 4.  When we first got the diagnosis, he was at a 12, then in February (with 3 months of treatment behind him) it had dropped to 3.  The downward trend is very encouraging, it will likely never go to zero, but we'll take normal range and treasure it for as long as we can.  He made it in to work this week, twice..... the 50 minute drive each way has been a huge obstacle in allowing him to return to his office. But he made it largely unscathed, except by his wife who wishes he would remember to send a quick text to let her know that he got there without incident.  His pain has become more manageable and even his pain doctor feels it is time to have him start backing off the high doses of pain medicines as his body has been responding well to treatment. 

So, where does all this leave us?

We have spent the last couple of months adjusting to the new routine of Daddy being home, but not home, but home.  He has been there in a pinch to help with the girls with lunch, a diaper change, a much needed hug.  We've had to practice being as quiet as church mice when he has a conference call or when he needs to focus on his work.  But with him being gone these couple of days, back to work, back to "normal".... I am left with a surreal experience.  Still in the routine of taking the girls where we need to go, activities, friends, and everything else, but returning to an empty house.  I am thankful for the girls innocence, as they exclaim proudly that we beat Daddy home from his doctor's appointment when we returned home and Daddy's car wasn't in the driveway..... and that they are going to hide until he comes home and finds them.  I explained that Daddy felt good enough to go to work, so he won't be back for quite a while and they seem genuinely confused that he won't be home until after dinner.  They don't seem to remember the "old" days.  I also hate to admit that in some ways I kind of liked the new normal, obviously not that C has cancer and the enormous toll it is obviously taking on all of us..... but there has been a huge change in our family.  The girls have had the chance to spend more time with Daddy, sharing happy, little achievements as they happen, snuggling in his lap as he puts out the latest fire at work via email, having the bedtime routine consistently involve him. 

We have often reflected that we took a lot for granted before all this happened, and if there was a blessing to be found in all this, it was that we now cherished our family and our time together more.  It is so easy to go along on the day to day, forgetting to stop and be grateful that we have what we do.  Now I think I have been taking for granted the recent time we have had together, that he is here where I can keep an eye on him.  I can remind him to take his medicine, try to rub his back to ease his pain, be a sounding board when he needs it.  Even just having my best friend around to share a quick joke or a minor annoyance that would otherwise be forgotten by the end of the day has been a gift.

With this latest development in our normal, simultaneously I wonder if I have finally woken up from this nightmare and the last four months never happened, then back to the "what ifs"of our reality.  I know I should be all sunshine and rainbows, excited at the movement forward in his body and attitude, but with the foundation of blissfully ignorant stability yanked from under my feet and replaced with quick sand.... it is hard to take comfort in where things are today.

With all that said,  I am choosing to take today and be thankful for all the blessings that it has brought to our family.  I can be sad later, I can be mad later, I can be fearful later...... I don't want to waste today worrying about the what ifs of tomorrow. 

Reality Bites

“The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.” ― Maya Angelou


Denial, might be too strong word, but as denial is one of the phases I am supposed to be going through according to all the books, I guess it is somewhat true...... auto-pilot seems to be more accurate. I know I have been going through the whole range of emotions and foolishly thought they had finally evened out, then I got hit with another cold slap of reality this past week.

Everyday I wake up prepared for crisis mode, never sure of what level it may be.....then keeping the girls' schedules normal with their dance, gymnastics, horseback riding lessons, school, play, while also catering to my baby girl... every morning I just try to take on only what I have on the calendar for today. I don't focus too far in the future, I can't plan vacations until we get C's pain under enough control that we can be in the car for a decent amount of time, can't plan a trip to visit family in Texas for the same reasons, even accepting the offers of friends to help with the yard work has fallen on the shoulders of good friends to organize and arrange as I can't seem to focus that far out. Play dates are hard to put together as I don't know how C will be feeling day to day and I hate leaving him when he is having a rough day. I know it is easier on him to have a quiet house on those days, but it is still a struggle for me as I wish I could be in both places at once.

So I don't know if denial is what I walked in to our appointment at NIH with, but I wasn't quite in the right place to hear the doctors talk about C's cancer and what exactly we are up against. Yes, I have repeated our story many times... used all the right terms, explaining why they aren't removing the prostate tumor, how the hormone therapy he is on reduces the testosterone in his body to slow the spread to his bones. But hearing a doctor talk about just how we will be fighting and managing this cancer for the rest of his life brought into focus that this really is my life, this has really happened, it isn't some awful dream I get to wake up from. There is no magic bullet that will make it all go away, this is our new reality, our new normal.

After processing the events of this week, and revisiting the pain, sadness, and fear I thought I had moved past, I have found a renewed energy to fight. I want to research all that has been published about fighting this beast, I want to change our diets to give C's body a better chance at not only standing up to the cancer but to the treatments as well, and to get our house back in order and not let it stagnate in the chaos it's become.

I took the girls to church this morning, dropped them in their respective classes, then settled in the room they reserve for nursing mommies to feed baby T as she had woken up just as it was time to walk out the door. As I was sitting in the little room following along with the service on the overhead speaker, I opened the Bible app on my phone (yes, they have an app for that....) to follow the scripture from which the pastor was reading. I don't know why, but the app opened itself to the story of David and Goliath. I have to admit to drifting away from the pastor's sermon and reading that story several times. I feel like that is exactly where we are. This cancer is huge, scary, determined.... but we have to go in with faith and fight the best we can, and hope for the same outcome.

Also with the realization that we only have today and that tomorrow will always be uncertain regardless of our current circumstances, mortality being more in focus than ever, I need to remember how to stand on my own two feet. C takes amazing care of me, provides for our family so that we never need for anything, as curmudgeon as he can seem to outsiders I can't remember a time he ever said "no" to anything I have wanted for myself or the girls. To begin conquering my fears, I really need to learn, if not take over, the areas of our household long since delegated to C like outdoor maintenance and finances.......... though I think I'll take a chance on tomorrow for learning to change the tires on my car.