Another Round Down

I was pretty worried going into the latest round of chemo that I would have a rough time.  My previous experience was quite difficult and I was afraid I would go through something similar this time.  Well, I made it through the week in the hospital without too much trouble.  I felt really tired and a little bit nauseous, but nothing like what I had experienced before.  And the following week recovering at home went by really slowly but I didn't end up getting sick and having to return to the hospital.  I think the smoother ride this time around can be attributed to me being healthier overall going into it.  I had blood tests on the Monday, Thursday, and the next Monday after finishing the round of chemo.  And while my white blood counts got pretty low, they never hit zero, at least as far as I'm aware.  That's a big change from before, when my counts would be zero for an entire week.  So this time I escaped with no fever, and no return trip to the hospital.

The most significant side effect I experienced was the 'chemo brain'.  General fatigue can have a similar, but less significant effect on your brain functioning.  At least in terms of how it feels.  If I'm really tired I'll be less mentally sharp; we all know what that's like.  With chemotherapy it can feel like there's this fog that has descended on your ability to think.  I have a hard time remembering things or focusing.  I've gotten in the habit of doing crossword puzzles every day, and during the week following treatment I could hardly look at a puzzle.  But as time goes by my head is clearing up.  I still have headaches a lot, but at least I can focus again.

Towards the end of this past week my hair started falling out.  I awoke each morning to progressively more hair on my pillow, until Saturday morning when I decided it was time to buzz my head again.  So Denise cut all my hair off and I shaved off my beard, which had started falling out too.  And now I'm more or less bald again.  I have no idea how long it will take to come back, but I can take comfort in knowing that it eventually will.  I'd say the worst thing about losing my hair is that my head is cold. And the second worst thing is that I don't like how it looks as much as when I have hair.  So many things fall into that category when you have cancer:  It sucks, but it's a hell of a lot better than not being alive.

It was kind of cool to be back at the hospital this time, feeling relatively good.  It was getting to the point before that I dreaded being there because I felt so bad, and I was in less control of my comfort level there than I was at home.  But this time was much easier.  And it was really nice to see some of the people who had taken care of me previously.  I don't know the outcome of this whole thing, but it certainly looks good at this point, and so it was fun to be a cancer patient who seems to be getting better.  Certainly not all of them do.

I've thought a lot about the line between positive thinking and being realistic about my situation.  On the one hand I don't want to pretend that things are somehow different or better than they are.  But on the other hand I don't want to doubt my ability to get better; I want to believe in it, and I want that belief to come true.  It's one of the many psychological challenges of getting cancer.  We have enough fear and doubt about ourselves and our lives in general anyway without being worried about dying all the time!  But I really don't feel like I'm dying, or like I'm going to die any time soon; I really feel pretty good, except for the chemo side effects.  So I just have to go with that and let it provide some comfort.

I have some more chemotherapy coming up during this next month.  I'm going to receive weekly injections for four weeks starting May 14th.  This is the next part of the maintenance regimen I'm on.  I'm not really sure exactly how it will affect me, since I've never had this dosing before.  It won't be nearly as intense as what I've just gone through, supposedly, but it also lasts four weeks, so I'm not sure what the cumulative effect will be.  My doctor seems to think it will be just fine, but who knows what that means.  Each new thing is a complete unknown, which is another of the psychological challenges of dealing with cancer and cancer treatment.  I can't wait until all of this is over, but I've got a ways to go with the maintenance stuff.

For me the best coping mechanism has been to just go out and have fun.  To play outside and see my friends and do things that I enjoy so I'm not thinking about any of this stuff.  It's good to reflect on it from time to time.  But most of the time I don't want it on my mind at all.  It's just a lot easier to deal with that way.  The time will pass and the treatment will be over and I'll get to move on.  And that's what I'm the most excited for now.  Love to all of you
-cd

Next Step

It's been a long time since the last update.  The main reason for that is that I've been waiting on a decision from my doctor regarding the next step in my ongoing maintenance treatment.  I met with him today and we've come to a decision.

The path to arrive at this decision took a few twists that I want to share with you.  I've been getting a monthly shot and taking oral chemotherapy each week since November.  This has been going relatively smoothly, but my blood counts have never really been up to a normal level.  They have remained for the most part slightly below the bottom edge of the normal range.  They are high enough to not be of much concern, but low enough to indicate that my bone marrow is not at full health.

This maintenance chemotherapy regimen I'm on calls for a couple of trips back to the hospital over the course of two and a half years for a week of IV chemotherapy similar to what I was getting before.  But due to the blood count issue my doctor wasn't sure he wanted to give this additional chemo to me.  He was concerned with the idea of over-treatment, and I shared his concerns.

A couple of weeks ago I had a PET scan.  This was a first for me, and thankfully it came back normal.  So according to all tests and scans and empirical evidence I am free of cancer still and doing quite well. This is great news for me and I'm thrilled to be able to share it with you.  But I've had this decision hanging over my head for a while now and I really wanted to wait to write an update until it had been made.

Much of the research into the type of cancer I had has shown great success with a certain set of factors. I happen to fit all of those categories for likely success, with the slight exception that the younger one is the better off they are; but I am still pretty young in the grand scheme, so still good.  And a part of the treatment that has proven successful has included this prolonged maintenance treatment.

So, to make a long story shorter, the decision has been made to go ahead with this next round of chemotherapy.  I will start in a week, spend a week in the hospital.  Have another week or so of low blood count recovery time, and then be able to return back to 'normal'.

I have spent most of the past few months dreading the outcome of this decision, if I'm honest.  My experience with induction therapy was pretty intense.  I felt completely disconnected from the world around me.  Now that I look back on that I wonder how much of that was related to all of the pain meds I was taking.  But the point is that it was a traumatic thing to go through and I really don't want to have to do it again.  Thankfully this won't be the equivalent of doing it again.  I will have to spend time in the hospital again, and I will have to go through the discomfort and the physical challenges of recovery.  But it will be just one quick round, and then I can recover and resume my lovely, enjoyable life.

I feel really grateful that I can share what I feel is good news.  A friend of mine recently lost a loved one to relapsed cancer.  My heart goes out to them and their family.  I feel a lot of things about that and even about my own situation.  Conflicting things. Anger, frustration, confusion, gratitude, love.  I am glad that life is so full of experiences, really deeply intense things that we go through, that we get to go through.  But man does it suck sometimes.  There's no getting around that.  At least we can respond to those challenging things by pulling together and supporting each other.  That's the beauty of the challenging things, they end up bringing us together.

I think the thing that stands out the most for me right now with this experience of dealing with cancer is that it has given me an opportunity to really step back from the nose-down, fully engrossed reality of every day life.  And what I've seen from there is that most things just aren't so important as we think they are.  Most of the things we are worried about and caught up in are just things, things that come and go, and fade away.  We decide what matters out of it all.

I'm so glad that this has brought me closer to so many of you, even if it's just through you reading my words and in so doing sharing this experience with me.  We all live in our own versions of reality and so the experiences we get to share with each other are important to me.  Wish me luck with this next round of chemotherapy.  I will update you on the other side.

Love,
Chris

What Matters?

I was diagnosed with cancer and my life was wiped away. When I think back to that time I really had no sense of the scope of what was happening. It was too big to even process. That feeling of being in shock, when something bad or really intense happens, that lasted for like three months. So but I was laying in a hospital bed during the first weeks after I was diagnosed, and people would come to visit, and I would talk with my family, and I had all of these ideas running through my head about what had changed for me, already. It was that fast. My old life was wiped away, and that empty space was being filled in, like a rush of water from a flood. New ideas were flying around. And I kept having certain types of feelings, especially about all of the people that were coming to see me and who were contacting me in different ways.

It has taken a long time for some of those things to congeal. I'm sure that process will continue, I'm definitely not done with this whole story yet. But some of those ideas have started to become more concrete for me. The other night I was thinking about life, and the different experiences people have. How we all have all of these different experiences, and we think that those things make us different from each other. And in many ways they do. But at the end of the day we're all just people living life. So in that way we're all the same. You live your life, and you do all these things and you develop this way of seeing and thinking about yourself and your life and that becomes your reality. And I do the same thing, and my reality is different from yours. But really we're exactly the same, both just living life and having our own experiences. And in that sense it doesn't matter what they are. It doesn't matter who we are. I say it doesn't matter, but what I really mean is that it doesn't matter in particular what the experiences are. It matters that they are and that we are. It matters that we experience something, and feel something, and create some kind of reality for ourselves. But that's sort of inevitable, just as a result of being a person and being alive.

So I was thinking, well what really does matter then, like in particular? What content of our lives really is important, if we all have different lives and experiences and realities that are all very meaningful and important but the contents of which aren't particularly important? And I thought about how it would feel to be about to die. Funnily enough, I've had that experience. Not something to envy, mind you. So that's why I'm sharing, so hopefully you don't have to have that experience, but you can still get something from it anyway. And here's what I thought.

When you're old and you're going to die all you're going to think is, “Did I give enough love?”.

You're going to think about all the relationships you had in your life, about all of the people you knew and you're going to think, “Did I express to that person just how much love I feel for them? How much love I have in my heart for them? Do they know?”. And you might think that the answer may be yes, but you will feel an ache. And that ache is your heart yearning to express more love to the people that you care about. To everyone. The reason for that ache is that we live to express love. It is the most fulfilling thing we do. And we really can't express enough of it. We can try, and we can be successful in that endeavor, but I think we will all probably still feel like we could have expressed more.

That is the particular feeling that I had more than any other when I was laying in a hospital bed with tubes in my chest. I felt absolutely filled up with the love that I felt for all of the people that I know. And the ache would grow really intense when I thought about the fact that I might die, that I had almost died, and that so much of that love would be, or could be unexpressed. I wanted nothing more than to let all those people know, to let all of you know, how much I love you.

I'm sure others have had vastly different experiences than I did.  Not just with having cancer, but with being close to death.  I mean, that was one of my earlier points, that we all have all of these disparate experiences.  But I do have the sense that this feeling I'm talking about is something that nearly everyone can relate to.  It's closer to universal than most experiences.  An interesting contrast can be found in considering the ways that we're different versus the ways that we're the same.  What do you look for when you see other people?  The similarities or the differences?  Or both.  One more thing I'll leave you with, is that I feel so refreshed that now when I think about these types of things I feel like I can really appreciate the fact that I don't know the answers.  I really really wanted to know the answers before.  Not that I don't want to know now, more that I'm not so afraid of not knowing, or I'm not so hung up on knowing, or something like that.  It's a kind of freedom that I'm really appreciating.

A quick update on my treatment:

All is going well with my maintenance chemo.  I'm taking some pills each week, and once a month I get an IV shot.  I notice the side effects from the drugs, but they are very very manageable.  I don't have days on which I can't function.  So I'm quite happy about that.  There are some potentially more involved, intense treatments that I may have to undergo down the road.  But I met with my doctor recently and he let me know that we would evaluate those things as they came up, they are not inevitabilities.  Which is good to know.  I get the sense that he is willing to adapt to how I'm responding, to how my body is doing, and to cater the treatment to that, rather than simply plowing ahead with a regimen because it's the thing to do.  The peace of mind that I'm feeling as a result is a big deal for me.  It's amazing how much anxiety having cancer and undergoing treatment for cancer can cause a person.  But again, all is well, and I'm going rock climbing, and just enjoying myself, and it's wonderful.

Not Missing Out

The other day someone asked me if having survived cancer had influenced me to feel like there were certain things I had to accomplish in my life.  Things that I now felt obligated to do, or that I absolutely didn't want to miss, having gone through what I have.  I've been thinking about this question a lot recently.  In fact, I've been thinking a lot about what is different in my thinking, in my perspective on my life now, compared to before I was diagnosed.  About how I feel on a daily basis, whether it's better or how it's different from before.

One thing that I think is important to communicate about what this feels like is that I don't necessarily think of what I went through as a near-death experience, even though it was.  The overriding feeling for me is more of having gone through something really difficult, both physically and psychologically.  The near-death experience didn't last a long time, and it really was months ago.  The enduring challenge of undergoing chemotherapy is something that lasted a lot longer - something that I am still going through in fact - and so this is definitely the strongest sensation I have of what I've been through.

Getting cancer changed a lot of things for me.  But particularly it changed how I think about myself.  I used to think that there were certain ways that things are, ways things are supposed to be, and ways that I fit into that story.  I thought I knew the answers.  More importantly, I was concerned with the idea of there being answers to know.  Most significantly I used to think that I was special in some way.  Somehow different from other people.  I thought I had a deeper understanding of life than many others, and that this set me apart from them.  This was an isolating way to think of myself.

When I found out I had lymphoma, this idea that I was special dissolved pretty quickly.  I saw through it in a way that I never would have been able to otherwise.  I realized that not only was I not special and different, I was just exactly the same as everyone else.  I think a lot of people in my generation were fed this idea that they are special.  I'm not making a judgement about it.  I understand the motivation and the tendency behind it.  We want to see the world improve.  We want to see progress, evolution.  And so we convince ourselves of it, whether it exists or not.  And actually I'm not even denying the idea of that, not at all.  I tend to believe that we are evolving, as a group, on a large scale, even if it's at a slow pace.  I don't know, I mean, I have only been alive 30 years, and have only seen what I've seen - a very small glimpse of the human experience.  But here's my point:  I'm not special, not any more than anyone else is.  We are all individuals and we all have our uniqueness.  But we are also all basically equal.  And that is wonderful.

The reason I think this is wonderful is that seeing people in this way encourages appreciating them, no matter who they are or what they bring to the table, for just the way they are.  The same concept can be applied to life in general.  Whereas before I may have wanted my life to be or feel a certain way, somehow different than it was, now I am just happy that it is the way it is, and that it is at all.  So to bring this back to the question I was asked, regarding things I want to do or accomplish, my answer is that I do not feel obligated to experience certain things, or to accomplish certain things.  I feel incredibly grateful that I can experience anything.  And I am excited to do anything.  And I am so happy that I can just be here, now, thinking about and talking about my life.

Are there things I want to do?  Absolutely.  I feel freer to explore life than I did before.  I feel like a weight of obligation has been lifted.  The obligation to feel different from others, and to set myself apart from them through my thinking.  I didn't realize I was thinking that way before.  But I'm sure glad that I have been able to see past it.  The biggest difference for me now is simply that I'm happier.  And it has everything to do with this change in perspective.  It feels to me like I was trying to screw a square peg into a round hole but I just couldn't see either one for what they were, and then someone came along and was like, "dude, you're doing it wrong.  Here's a nice cold glass of lemonade."  The point there being that the whole act of screwing the thing into the thing was pointless and didn't even really exist, and so I should just sit back and enjoy myself and not worry about it.

I hope I'm expressing all of this clearly.  It's something that I can feel in a very tangible way, but that I'm not always sure how to explain to someone else.  The main idea I want to convey is that this whole thing hasn't created limits for me, it's removed them.  That's the simplest way I can say it.  I am just happy that I can fully enjoy myself, where I didn't feel I could before.  Because of that, I'm content to spend time with those I care about, doing whatever.  I am no less passionate about doing the things I love.  But I am much more passionate about the people I love, and that includes everyone who has supported me through this.  I'm not afraid of missing out, because now I know what's truly important to me.  And I'm so happy to have my life back I could cry every day.

Back To Work

Today was my first day back to work, and it was a wonderful way to start the new year.  This year feels like a fresh start in a lot of ways.  I have this sensation of being a new person; of new opportunities to experience life in ways I hadn't before.  It's always easy to look back and second guess oneself.  And it's not that I'm doing that exactly.  It's more that I'm happy that I'm not the person I was before, and that I am happy that I am the person I am now.  Chances to go through that kind of transformation don't come along very often.  So again, I'm grateful that all of this has happened and that I have been able to recreate my life from the wreckage.

Life goals that have come out of this experience:
- Be physically active (I need to repair my body!)
- Give to others (so much has been given to me, I want to give back)
- Take time to appreciate it all (a general reminder to myself to take a step back, perspective is everything)

It doesn't have to be complicated.  There are so many ways to enjoy life, and to be engaged in living it.  I will always come back to the feeling I had when I came out of surgery, which is:  if you're worried about it, it's a waste of time/energy.  I'm not sure why it was phrased that way in my mind, but that was the thought that I couldn't get away from.  It was like no problems existed, they had all been wiped away by the severity of my situation.  And I realized that some things are important, but nothing is worth being upset over.  Life is a gift.  It was a feeling of relief and of a kind of elation, which may sound odd.  That's just how I felt at the time.

The experimentation with my maintenance meds is going well.  I've moved to a smaller dose of one of the main medications that I take each week, which hopefully will be a level that I can withstand over the long term.  I will still have monthly shots, which are a little rough, but that just lasts a day or two.  I feel good about it, since it seems that I will be able to handle it without too many disabling side effects.

It's hard to believe that I've come this far when I think back to the most difficult moments during chemotherapy.  For that matter, it's hard to believe that any of it happened at all.  In a way it feels like no time at all has passed.  Sitting at my desk today and seeing everyone again was so nice.  It felt like coming home.  That says a lot about the people I work with; a wonderful group of folks.

So here's to a new year, and to embracing what life throws at us.  I am so happy to be productive again.  My time recovering was wonderful.  But let's get on with things shall we?  Happy new year to you all.

Love,
Chris

Trial And Error

It's been a while since my last post, and there are some good reasons for that.  I'm done with the intensive induction chemotherapy, as you know, so I've been free to begin returning to my normal life.  This has been a wonderful experience, save for a few challenges along the way.

The week of Thanksgiving, a month after my last treatment in the hospital, I began maintenance chemotherapy.  This is a process that will last the next couple of years and mostly involves a monthly shot and some oral medication that I take myself.  It's comprised of much lower doses of some of the drugs I was receiving before, and one new one that I hadn't had previously.  That week that I began the maintenance regimen I started getting really sick.  I was throwing up every evening and at night for a couple of days, and couldn't eat much.  Then it got worse, and I was throwing up all day and night and couldn't eat at all.  Thanksgiving dinner wasn't much of a feast for me this year.

On Friday, after a few days of this awfulness, I called my doctor and I ended up stopping the oral meds I was on for a while.  Since then we've been experimenting through trial and error with the doses of the medications, trying to find a level that I can tolerate, that will allow me to function normally.  This maintenance chemo, by the way, is supposed to be completely tolerable, and is supposed to allow the patient to function more or less normally, save for a little discomfort or mild side effects.  What I experienced was much worse than what I was expecting to say the least.

I'm still working out the levels that I will be able to tolerate.  Yesterday I had a blood test and it showed that my white blood counts are very low.  This means that even the low doses I've received are too much for my bone marrow.  So, this is an ongoing thing that I'm dealing with.  But it's still way way better than what it was like before.  I can get outside and go hiking and climbing and play with my friends, and it's wonderful.

Last week my buddy Aaron and I took a little road trip down to southern New Mexico and Arizona to see some sights and do some rock climbing.  We saw Carlsbad Caverns, which may be the most amazing place I've ever been.  The size of the caves and the beautiful formations inside them were astounding to me.  My jaw was on the floor the whole time.  I'll have some photos to share once I track down my camera's USB cable.  Then we did a little climbing near El Paso and then over towards Tucson.  We had beautiful weather and it was really nice to get out of town and see some places I'd never been before.

The biggest challenge for me in the past month has been what I would call a readjustment to the reality of my situation.  When I finished treatment I felt like I had survived a really intense storm and that the skies would clear and everything would be all right again, I would get "back to normal".  Then I started maintenance and had that extremely rough week of being sick and realized that this is very far from over.  I have a long way to go with the maintenance treatment.  And I'm going through what is proving to be a very difficult process of weening myself off of pain medication.  So in a way it's like I've had to reabsorb the reality of things all over again.  And that's been hard for me at times.  But at the same time there's the perspective that everything I get to experience now is a gift of sorts.  I could have died, I came really really close to dying.  So all of this may have never been.

I have to tell you, without getting into a lengthy explanation of why, that my life has changed enormously.  The way view things, the way I interpret things, even my very core values and beliefs have undergone a significant change.  And I'm happier in many ways now than I ever have been.  I've been able to reconnect with a lot of people from whom I felt totally cut off before.  Those relationships have enriched my life in new ways.  I'm filled, absolutely to the brim, with love and gratitude for it.  I was talking with my friend last night and the thought we came to was that I wouldn't wish this on my worst enemy, but it's the best thing that's ever happened to me.  I think that's a pretty common experience for people who survive cancer.

I'll write again, sooner this time, to fill you in on the progress with this trial and error maintenance chemo process.  Thanks for reading.

Love,
Chris

Moving Forward

It's been three weeks now since my last chemotherapy treatment and I'm starting to feel a little bit normal again.  As most of you are aware, I had a bone marrow biopsy and it came back showing no more cancer.  It also showed that my bone marrow was at about 30% cellularity, which basically means that the chemo I've had so far has killed its ability to produce new cells to a point at which further treatments would be potentially too damaging to my body.  My doctor, in the interest of not 'overtreating' me, has decided to suspend further chemo in light of these results.  That of course means that I'm done with chemo, and that my cancer is effectively gone.  However, my path to full recovery is far from over.

I have an appointment with my doctor this week to find out what will happen with the maintenance chemotherapy I'll be on for the next year and a half or so.  This will be very low dose treatments that I'll take, mostly in pill form.  They will be nothing like the chemo I've received so far.  I will be able to take most of them as an outpatient.  This is a huge relief to me, since I think that one more hospital stay at this point may have pushed me over the edge.  I'd had enough, to be sure.  My body is severely compromised.  Psychologically I was getting close to what I could handle.  There's only so much 'survival mode' a person can deal with.  And I was just about ready to break.  I'm incredibly relieved and thankful that I can move on to the next stage of things and begin to heal.  I am excited to get back to work, to get back to my normal daily life.  I'm so excited to get my body back and to be able to play again.

This stage of the process has its challenges.  Yes I'm done with chemo now, but that doesn't mean I'm automatically better.  It will take months for my body to detoxify from all of the chemicals its been subjected to.  It will take months for me to regain a normal level of energy.  I will do the best I can to rehabilitate myself.  But it's not a fast process.  I want this to be over, but it just isn't, and won't be for a long time.  That isn't any reason to dispair, however.  It's just the reality of where I'm at.  The other tough thing for me at this point is to taper off the pain medication I've been taking.  I probably experience as many negative side effects from the pain meds as I do from the chemo.  And I can't just stop taking them all at once.  I have to slowly decrease the amount I take each day so I don't have really awful withdrawal symptoms.  It's not easy, still.  But I'm so happy to be here, and not still in the midst of chemotherapy and the daily nausea.  That's something that seems to be fading away a little more each day.  Pretty soon I won't be sick to my stomach at all, and I am thrilled for that to come.

I feel like I've escaped from jail.  I have this sense of freedom that I'd been dreaming about for months.  And now that I'm finally feeling this way, I'm wondering what to do with it, what to do with myself.  One of the things that has been on my mind quite a bit is that I want to be a resource for people going through cancer.  I think that the most significant thing I wish I'd had more of is access to other people who had gone through a similar experience.  Sure, I talked with people who had had cancer and gone through chemo themselves.  But I think I would have liked to have someone who I could rely on more like a counselor.  That's a lot to ask of somebody, but it's something I'd like to do for others if possible.  The thing is, it's hard to relate to something so extreme if you haven't gone through it yourself.  And one of the most difficult things for me to deal with was feeling alone a lot of the time.  I wasn't literally alone, but I did feel isolated in my experience.  So I want to be able to help someone else not feel that way.  To answer their questions, listen to their complaints, be there for them to express their fears and concerns.  Like I've said before, I had incredible support from my friends and family.  But I honestly didn't want to burden them with any anxiety I was feeling.  I know I could have, and I did at times.  But you don't want your loved ones to worry about you, or to think you're not doing ok.  They are scared enough as it is.

I don't think I'll ever be able to express enough gratitude for the support I've received from so many of you.  Going through something like this is a huge emotional burden.  And so many of you helped to lift that from me on so many different occasions.  I really can't count the number of times I cried, feeling overwhelmed by someone's expression of concern, or just by the very fact that they were thinking of me.  Those gestures of support are what carried me through this.  I really never felt like I was facing the end of my life.  But I certainly felt really really far away from the reality I'd known, and it was pretty scary at times.  So having someone reach out would help bring me back from that far away scary place.

So, there's a long way to go.  But that isn't much different than the normal reality of life.  There's always more to do, more to experience.  And even if some of it is difficult or unpleasant, it's better than the alternative of no experience at all.  I'm so grateful to get to move on to this next phase.  To begin to really heal.  I'm so grateful to all of you who've been following my experience with cancer, it means a lot to me.  Thank you.  I will keep on going, and I know you will too.  It's what we do.  And hopefully this crazy bump in the road will provide us all with a little more meaning.

Love,
Chris

Round 6 Update

It's been a while since I've written a post, so I wanted to fill you all in on the latest news.  Recovery from Round 6 has been fairly rough thus far.  I've had more pain in general with this round than with any other by a long shot.  I had a blood transfusion this past Tuesday, which helped how I was feeling. But then by Thursday I was starting to get sick.  So on Thursday evening I was admitted to the hospital with a fever and I've been there ever since.

There are a couple of important developments with my situation that I want to share with you.  First off, my body has been getting progressively weaker with each round.  This is normal with chemotherapy.  One of the things that is affected most is my bone marrow's ability to produce new blood cells.  So my blood counts, which get knocked out with each round of chemo, are bouncing back more slowly each time.  Before I started the sixth round my blood platelets were low enough that I had to wait an extra week to start.  After having received the sixth round, my counts are similarly low.  So, there is a question around this issue.  If my body isn't producing platelets and other blood cells, then it is possible that I've reached the limit of the amount of chemotherapy I can receive.  The goal is to kill cancer cells, but not to completely decimate my bone marrow.  One other possibility is that my disease is causing this issue.  In other words, it's possible that there is cancer in my bone marrow and that's why it's not working like it should.

Now, based on my understanding of chemotherapy, combined with my experience undergoing chemotherapy, and keeping in mind the positive progress I've made so far with treatment, I believe that my weakened bone marrow is the result of the chemo.  We will find out one way or the other this week.  My doctor has scheduled a bone marrow biopsy that will determine just what is going on in there, and why I'm not producing blood like a normal person any more.  This has some pretty big implications.  It could mean I'm done with chemo, and can move on to the maintenance treatment.  It could mean that the treatment I've received hasn't worked and that I'll have to try something else.  Or it may indicate that I do need the last couple of rounds to finish off what I've started here.

I'm excited about this biopsy, being the optimistic person that I am.  But there are certainly some scary potential outcomes.  Mostly I just want what I'm going through to change, because it's getting close to the point of ridiculously difficult to endure.  For now, I'll be in the hospital for another few days at the most.  I'll get some more blood, and when my white counts come up either tomorrow or the day after I'll be able to head home.  There's so much going on right now, so many things feel dynamic to me.  We have the end of October, which to me has always represented the beginning of the end.  We have the election looming next week.  We're fast approaching the end of what has been an absolutely insane year.  I am so ready to take this year's worth of experiences and apply them to my renewed life.

I'll post again when I get the bone marrow biopsy results.  Wish me luck.  Love you all!
cd

Reinvention

Every day I think about what I'm going to do, what life will be like when I'm finished with chemotherapy.  In a lot of ways I have a blank canvas to work with.  And so it's fun to consider all the different ways in which I could fill it in.  The life I had before I was diagnosed is effectively gone.  My apartment is gone, my old lifestyle is gone, my old body is gone.  I will need to recreate all of those things for myself.  It's exciting to think about.  And it provides me with a lot of motivation.  It feels both very close and very far away.  Time is crawling by, and is flying by at the same time.

I've had a few opportunities in my life to sort of reinvent myself.  A chance to choose a new place to live, and to make decisions about my lifestyle or the ways in which I will spend my time that can be a little more difficult to make when you're in a routine.  They have always been times of significant change and growth for me.  Because when these fresh starts have been made, they've represented internal change as much as external.  That's definitely the case now.  It's safe to say that being diagnosed with cancer and going through chemotherapy treatment is the most significant and most challenging thing I've ever experienced, by a long shot.  I feel like my entire life was erased, wiped away.  And for a while it was pretty scary, because I wasn't really sure whether I would ever get it back again.  There are still plenty of things up in the air, but I feel really confident that I will get a chance to live a healthy life again soon.  As I move closer to the end of my treatment I can taste the freedom that comes with this opportunity to start fresh again.  And it's delicious.

Imagine if everything you had was taken away, and you could decide what to replace it with.  Some things you would want to keep of course.  And thankfully I have the good fate to be able to keep some of my favorite things in my life.  But really take a moment some time and consider what is pleasing and fulfilling about your day to day existence, and what isn't.  Take a moment to imagine what you might change if you could.  I'm willing to bet that if there is anything you would change, you could probably change it.  Some things we feel stuck with, and we decide to keep or to commit to even though we're not thrilled about them.  But other things are simply there and become sort of invisible.  Things that we really don't like, or wouldn't like if we had a chance to really examine them.  It's not easy to do this, because it's hard to step back out of your self far enough to see these things.  But for me, there were some ways in which I was thinking about my life, and some behaviors that were inspired by that thinking, that I am extremely glad to have lost.  And I know that I will be a happier person for it going forward.

Being sick or unwell is a psychological challenge.  It's a constant battle for me.  I feel up, then I feel down, and when I feel down it can feel like the deepest hole, impossible to climb out of.  But this shining future that I can see sitting on the horizon keeps me going forward.  I know I'll make it there, even when it seems really really far away.  And the moments in which I get a chance to connect with someone, or feel a little bit normal, and the moments in which someone shares something from their heart with me, those things keep me going.  And the encouragement I've received from so many of you.  The words of reinforcement and strength and love that so many of you have shared.  Those things keep me going.  Like I said, this is the hardest thing I've ever done.  I'm not sure I could have done it without you.  Thank you, I love you all, and I will definitely see you on the other side.

Rare Earth

Whoa, it hit me kind of hard this morning.  I stepped into the shower and that song, 'I Just Want To Celebrate' was in my head.  You know, the 1971 smash hit by Rare Earth.  And as I started paying attention to the words I realized that I haven't been celebrating each day.  I haven't been enjoying each day of my life.  I haven't even been appreciating them.

It was another difficult week in chemotherapy land.  I managed to make it through the blood count nadir this time without having to spend a night in the hospital, which is fantastic.  But almost every day for the past week has been really unpleasant.  I've had this intense stomach pain and nausea which have eliminated my appetite, caused me to throw up, and basically killed any and all joy I may otherwise have been experiencing.

On Saturday I went over to the hospital and they gave me a blood transfusion.  And now, a couple of days later, I'm feeling much better than I had been.  I'm still a bit queasy, but nothing like before.  So I guess when I 'heard' that song in my head this morning I was a little more receptive to the message.  What struck me right away was this emotional pang of sadness that I would spend my days in this beautiful world without appreciating them.  I immediately thought of my family and the huge amount of love we feel for each other.  And I couldn't imagine how I could possibly not appreciate every single moment I get to share with them.

The other thought I had was about having cancer.  There are a couple of things here.  First, if there's any lesson that someone with cancer, or any other potentially fatal illness, ought to learn, you would think it would be to appreciate each day, right?  I mean, what could possibly create a clearer perspective on how valuable each day is than the possibility of having them taken away?  And the truth is, I do feel this way.  I am indeed more grateful than I can express to still be alive and breathing, and to be connected in any way to all of you.  Because the second part of this of course is the reality that this might be it for me.  I could realistically spend the rest of my life in treatment, physically miserable, and then die, never having regained my full health.  I'm not saying I think that will happen, I don't.  But it is a possible outcome, and so I thought about it.  And that idea made me feel pretty sad as well.  Not sad that I could die, but sad that I could spend the rest of my life unhappy.

It's pretty hard to be happy when you feel like crap.  I'm not sure what it is, and maybe it's just me, but there just isn't much joy in feeling physical pain and discomfort all day and night.  It's hard to step out of it, is the problem.  It draws you in and sort of envelopes you in a dark and foggy haze, and you just have to wait it out.  I often find myself literally curled up in a ball, breathing my way through that fog, just letting the time pass until it's gone.  But the thing is, I'd rather live out each day, even if it happens to include experiencing that kind of pain, than to not be alive at all.  Part of that has to do with me believing that I won't feel this way for much longer, and I'll be able to return to a pretty normal life.  But part of it is simply my appreciation for the opportunity to experience life, no matter what it contains.  Any experience is better than no experience at all.  And that is the underlying concept that I can return to that allows me to appreciate each and every day, for exactly whatever it happens to be.  After all, it's a day that I get to live.  It's full of moments that I get to experience.  All of those moments provide me with the opportunity to learn, to grow as a person, or simply to take them in and let them inform who I am.

I may not feel like celebrating each day.  And frankly, for a lot of days, celebration would be a little much, don't you think?  Some days are just barely survivable.  But every single day is worth appreciating.  It's another gift, another chance to feel, to express, to be.  And so, I appreciate today.  I appreciate that I am here to experience it.  And that I can share that with you.

Love,
Chris