A small detour...

I have felt the need to update my blog for quite some time now as there have been some interesting developments in my personal fight against cancer.  But I haven't really known what to say, or more honestly, how to say it.  The events and my thoughts about these events have been so fractured and non-linear that it has been difficult to sit down and write about them.  It would be nice if my story had been more straightforward where I could say everything I needed to say starting at point A and finishing at point Z, but that hasn't been the case.  So I am afraid this blog entry is going to be somewhat muddled as I try to say everything I want to say but really having no idea how to say it or say it in an orderly manner.  So please bear with me as I attempt to just regurgitate the information in an informative manner, although at times it may appear to be haphazard.  I just want to get the information out there and I may stray in doing so.  This is my apology for the rambling nature of this post.   

So.  Where to begin?  I guess I'll start with where I left off.  I finished my chemotherapy for Hodgkin's Lymphoma last Spring and since then have had some interesting developments.  And by interesting, I mean really crappy.  After the eighth chemo treatment I had a PET Scan to check the presence of cancer.  At the time of that PET scan, the cancer was gone.  There was no detection of cancer anywhere in my body and I was told the chemo had done its job.  But a clear PET scan didn't mean I was finished with treatment.  I was told to complete the remaining four chemo infusions and that I would have another PET scan after that to verify my cancer-free status.  So that is what I did.  I finished the last two months of chemo and went in for my PET scan feeling very optimistic that my life would go back to normal soon and after recovering from the chemo toxicity I would have no lasting effects.  Well, my post-chemo PET scan was not clear.  Crap.  There was a faint glow on the scan in my collar bone area.  This spot was pretty small and my doctor thought it might mean the presence of cancer or it might mean something else entirely.  He recommended that I rest and recover from chemo and then come back in for a follow up PET scan in three months and see if the spot was still there.  So that is what I did.  I rested and began to recover.  

Excuse me please, as I begin to ramble.  My friends wanted to celebrate with me.  They wanted to show how excited they were for me.  They gave me a surprise "Cancer Free" party and I received such warmth and love for making it through this whole unfortunate mess.  It was truly awesome and heartwarming to receive such love from everybody that I had come out on top of cancer.  It was good for my soul to rejoice with my friends after such a difficult year and a half.  But at the same time, I couldn't help but feel tentative about celebrating.  I didn't want to tell anyone that the cancer may be back.  Not because I didn't feel it wasn't important enough to share, but because I was tired of the sad and uncertain days and the thought of cutting short the celebration for a small little glow on a PET scan didn't seem fair.  I wished for certainty in my rejoicing.  But I worried about it.  I don't think I was as jubilant about beating cancer as I should have been.   While everyone was telling me how happy they were for me, I couldn't help but think in the back of my mind "Yeah, but…"  So i joined in with the celebration and I tried hard not to be bummed out and I tried hard to appear more like a person that has just defeated cancer.  I feel I didn't reciprocate the enthusiasm as was expected.  I feel that I let people down for not being as happy as they were.  And I still feel bad for that.  

Three months passed and it was time for my next scan.  I went in and had the procedure and met with my oncologist a few days later.  As soon as he walked into the exam room I knew it was bad news.  I just knew it.  His demeanor and lack of usual humor was my first clue.  His desire to delay talking about the results was my next.  So when he said that I had another tumor and it had grown since my last scan, I was not shocked.  Instead I just asked him what this meant.  According to him, it meant that I had Recurrent Hodgkin's Lymphoma.  The use of the word recurrent means that I got rid of the cancer as previously thought, but it had come back versus another form of Hodgkin's Lymphoma called recuperative Hodgkin's in which the cancer never went away entirely.  I asked him if this was common and he said that it is not entirely common but it does happen.  He added in a more somber tone that it usually doesn't come back this fast though.  And that is a concern.  The prognosis for recurrent Hodgkin's patients can be affected by how quickly the cancer comes back, and anything returning within a year is not as favorable.  My cancer came back in less than three months.  But a silver lining to this grey cloud is that my cancer only returned at a Stage 1 level (meaning I only have one tumor) whereas before I started taking chemo I was a Stage 3 cancer patient.  He told me it would have been even worse had my cancer come back at the Stage 3 level.  So that is good news.  like I said - a silver lining.  So now I have this new tumor beneath my collar bone.  The same place I had had a previous tumor - not the same one, but within the same nodal group.  And now I have to tell people the bad news.  Which I hate.  Absolutely hate.  

Ramble on…  Breaking this news to people has been one of the hardest things I've had to do since this illness has started.  Now I was telling people who had been praying for me, wishing me well, keeping me in their thoughts, celebrating with me three months prior - that it was back.  I felt like a failure.  I did.  I honestly felt like I failed these people.  What was even worse was I felt like my cancer coming back was a nuisance for all of my friends and family.  I know it's not true, but I can't help but feel that people are thinking "Sheesh!  Again?!?!  Come on Nathan.  I've already prayed for you.  I've already given you all the support I can.  I'm not going to go through all this again."  I know, I know.  I am silly for feeling this way, but it is how I feel every time I tell people the bad news.  Partly due to this feeling of failing others, I have been less vocal about my struggle these past several months.  I feel like I shouldn't bother people again with this news and that I can get through it this time on my own.  It's not like I hide the fact that I still have cancer.  If asked, I share all the gory details, but I don't actively seek prayer and support as much as I had before.  It is a false belief on my part that people's sympathy has limits.  And perhaps what I am learning through this is that people have more to give than can be imagined.  I am extremely thankful for my friends who have cut through my shortsightedness and have reached out on their own to lift me up.  I have a friend who on his own decided that I needed regular prayer for healing and has been fervently meeting at my house every Friday morning for prayer time.  I am so extremely thankful for that time.  I have another friend who despite the cancer coming back has kept his promise to get a tattoo of my choosing to celebrate me beating cancer - the first time at least.  So he and I went into the tattoo parlor and I had them write "Romans 12:12" on my body and he did the same.  I am glad that he made me do it instead of waiting until this was entirely finished because I have been thankful to draw strength from seeing that verse daily and being reminded to be joyful in hope, patient in affliction, and forceful in prayer.  I need that reminder now more than I do in a month from now, or a year from now, or ten years from now, or whenever this is all behind me.  

A biopsy was the next step so I went to the hospital and had a needle biopsy performed.  I was a little pessimistic as to what they would find - or would not find as it turned out.  Throughout my battle with cancer, I have had four needle biopsies - all of which have come back as "Non-diagnostic with abnormal cell structure".  It was because of these nondescript findings early in my illness that I was sent to the Mayo Clinic.  It was there that the doctors decided to remove an entire tumor to dissect and finally found the tell-tale signs of Hodgkin's Lymphoma - the elusive Reed Sternberg cells.  So when my latest needle biopsy came back with the same non-diagnostic result, I wasn't surprised.  I was upset, but not surprised.  Of course this finding threw a wrench in the whole treatment plan.  You see, the next step for a patient with Recurrent Hodgkin's Lymphoma is a procedure known as Salvage Chemotherapy.  Not a very endearing name for a procedure, but nonetheless, this is what it is called.  Salvage Chemotherapy is a chemo treatment in which the patient goes to the hospital and has healthy stem cells from the bone marrow collected and frozen.  Then the patient is given 96 straight hours of Chemotherapy in hopes of killing all the cancer within the body.  But in doing so, the chemo drugs kill most of the other cells as well.  Which is why the stem cells were collected in the beginning.  Because after the 96 hour chemo regimen, the stem cells are reinserted into the patient's body in hopes that they will restart everything and healthy new cells will replace the dead and dying ones.  Basically, it is a procedure that kills the body before bringing it back to life - with the hopes that the cancer doesn't come back to life as well.  Needless to say, this is a pretty severe treatment approach and it is not used without absolute certainty of it being needed.  So with a non-diagnostic result from my biopsy, my oncologist was hesitant at ordering the salvage chemo and consulted with the doctors at the Seattle Cancer Care Alliance (SCCA).  They agreed that at this time I should wait for the cancer to develop into something more attainable before treating me with Salvage Chemotherapy.  It sounds crazy when I say it - that the doctors want to wait for my cancer to worsen before treating me - but when I hear it from my doctor it makes perfect sense.  So I am trusting him on this matter.  You may be asking if there are other treatments beside Salvage chemo - I did.  What about radiation?  Well, I went to see a radiation specialist who looked over my case and said with complete certainty that he would be able to zap my tumor and kill it entirely with minimal damage to my body.  Because of the tumor's location, the radiation specialist said that a part of my lung and perhaps a part of my throat could be affected leaving me with some damage to those areas, but he felt the damage was worth it to kill the tumor.  He passed his recommendation on to my oncologist and I began to prepare myself for some  radiation treatments.  But after meeting with my oncologist, I found out that he changed his mind about the radiation approach for a couple reasons.  First reason being that blood cancers like Lymphoma and Leukemia aren't typically treated with radiation for the reason that just because you treat the tumor at one location, it doesn't mean that the cancer won't show up elsewhere since these cancers typically travel throughout the body.  Which leads me to the second reason that he didn't want to treat my cancer with radiation.  If we did manage to get rid of the tumor, or the cancer that we can see, we have no idea if and when it may pop up somewhere else.  By treating with radiation we may actually slow the diagnosis process by hiding the cancer in my body until it pops up somewhere else and in that case it may be worse or too late.  So we decided to grant my tumor a stay of execution and monitor it closely.  I was told to get a CT scan every two months to monitor the progress of the tumor's growth and development and hopefully catch the cancer in time as it progresses into something more definitive that the doctors can stick their forks into - their words, not mine.  

Ramble.  So now that the cancer is back and people have been told, I am constantly asked how I am doing.  My first reaction is to give a nondescript answer of "Great, thanks for asking."  Which is always followed up with a second question of "Really?"  Now here is where I make that difficult decision every time someone asks that follow up question of "Really?".  Do I stick to my original answer and repeat that I am doing great (which is often followed up with the assumption that the cancer is gone) or do I tell this person the actual details of how I am feeling.  I usually just tell them that I am actually still having symptoms and there is still a tumor and because of that I am pretty tired a lot of the time and just not feeling quite right.  Then I receive the typical consoling sideways head tilt of concern and a small pep talk from this person and usually praise for how I am dealing with all of this and that is that.  Let me tell you something, hopefully without sounding too much like a prick - I am getting so tired of this routine.  I know, I know.  I sound like an ass here.  How can I be mad at someone who is genuinely interested in my well being.  But I am.  I have gradually become cancer or simply the person that has cancer.  Nothing else.  It happens more in church than anywhere else which is sadly why I don't go to church when I wake up and am just too tired to deal with telling people how I am doing.  People see me as the guy with cancer and they feel they need to inquire about it.  But I am tired of it.  I am tired of talking about it constantly.  I am tired of it being my identity.  I have learned through all of this that if I ever have a friend with cancer, I will not berate this person with ceaseless questions about how he is feeling.  Sure I will inquire from time to time how he is doing and ask if I can help in any way - or better yet, just do something for him without being asked.  But I will also remember that he is a person defined by other interests and pursuits and this cancer does not define him.  I feel that this could be a reason why I feel it is so important to continue with my blog so if anyone wants to know how I am doing they can simply read it here and treat me like Nathan when they see me out in the real world.  I know.  Prick.

So how am I feeling?  Well, if you recall from earlier posts, I have a paraneoplastic disorder.  Which means that when the cancer first presented itself in my body two years ago, my body tried fighting it off on its own and in doing so, caused some neurological damage.  If you may also recall, some of this damage was done to my urinating pathway.  I am still experiencing difficulty with this but nowhere near as bad as it once was.  I no longer have to self-catheter to urinate and the act of peeing comes much more natural now.  There is still hesitancy and difficulty at times, but like I said, it is much better.  It appears that this side effect may persist and become my new normal, but after going through everything that I have had to experience, I think I am okay with this new normal.  My other paraneoplastic symptoms (difficulty swallowing and breathing problems) have all but disappeared.  My other symptoms are more cancer oriented.  I have been dealing with fatigue and tiredness for a few months now.  I am just worn out and need naps more than ever.  However, I will say that I think I may have turned a corner with my fatigue, as it has been a couple weeks now where I don't need a nap a day to survive.  My strength is coming back and perhaps the prayers for healing are working.  Unfortunately, my itchiness still persists.  I have unbelievable itchiness throughout my body.  I can't stop itching.  I can't sleep on my side because my face can't touch the pillow or I will scratch it raw in the middle of the night.  I know, weird, right?  I experienced this itching at the beginning of my illness, but it went away during chemo.  I am hopeful that once the cancer is gone, the itchiness will cease to exist.  And take the fatigue with it as well.  

I had my first follow up CT scan in October and at that time the tumor had not spread and had actually decreased in size a little.  Once again, my doctor was stumped by the atypical path my cancer had taken.  It was good news that it had shrunk, but it was still there, so we decided to get another CT scan in two months and reassess the situation at that time.  My next scan was today, December 1st.  I now wait for the good news (of which I am sure it will be) and discuss my results with my doctor next week.  Now we are all caught up.  You know as much as I do and perhaps a little more.  I am hoping to have one more post after this one - simply titled "Cancer Free".  Wouldn't that be nice.

My life on drugs

Where do I start?  I have tried several times before to write this particular post and have had a really hard time doing so.  In the past, whenever I wrote a post for my blog I was able to simply write what was happening to me and lay out each event as best I could.  There is an effortlessness in writing this way - to simply remember and write.  However, each time I tried to write about my life on Chemotherapy I got frustrated with how negative my story quickly became.  And how dangerously close my words and tone came to whining.  That type of writing is annoying.  It annoys me.  I got fed up with how it sounded.  Nobody wants to read a “poor me” sob story.  And I don’t want to write it.  So I would usually just scrap what I had written and tell myself that I’d try again another day.  Maybe with a little more success.

This post was also difficult to write because I was never feeling good enough to write.  While on chemo, I lost a lot of motivation, especially when it came to writing about how bad I was feeling while feeling bad.  Does that make sense?  I hope so.  But now I have been off my chemo drugs for four weeks and I am beginning to feel better - I am slowly becoming more like myself.  I am becoming less and less nauseous from the smell of hand soap or from the taste of my toothpaste as I brush my teeth.  And now I am beginning to carry out my normal day to day activities like a regular person.  And that means I think I am ready to write again about my experiences.  So here it goes.  My life on drugs.

My drugs consisted of a four drug combination regimen of Adriamycin, Bleomycin, Vinblastine, and Dacarbazine.  Or ABVD for short.  To be honest with you, just thinking of these drugs fills me with anxiety and nausea right now.  It’s kind of surprising to see how affected I am by the mere thought of these drugs four weeks after my last treatment.  I was given this four drug cocktail every two weeks for over six months.  I would usually receive ABVD on a Friday and feel like death for a week and then slowly feel better until the next treatment began and then - BAM - death all over again.  You may be asking, “But Nathan, what does death feel like exactly?”  And that is a great question and one that I don’t know if I can answer to your satisfaction.  But I’ll try.

To begin with, Chemotherapy sucks.  It not only sucks, but it sucks balls.  Big, fat, hairy balls.  (Sorry for the blue language, but it’s true).  There is nothing - I repeat - NOTHING good about receiving chemotherapy.  Sure, it can kill your cancer, but make no mistake about it, it kills you while doing so.   And this is why I feel the best way to describe Chemotherapy is to liken it to death.  Most people often gain their impression of Chemotherapy by hearing the many nasty side effects of Chemotherapy.  Nausea, diarrhea, constipation, mouth sores, throat sores, hair loss, flu-like symptoms, weakness, and many more.  But those symptoms alone don’t fully illustrate what it feels like to be on Chemotherapy.  Because underneath all of these symptoms is a feeling far worse than all of them combined - it’s death.  It really is.  Imagine having the worst flu possible and all you want to do is just sleep and ignore the pain.  And you do that.  You do sleep.  Whenever you can.  I would sleep for days after my chemotherapy if I was able.  I would wake up at noon, eat toast, and then go back to bed.  However, chemo isn’t entirely like the flu in that sleep doesn’t help alleviate the pain.  You see, when you have a flu, you usually sleep and allow your body to fight off whatever bug is in your system.  When you wake up from hours of sleep, you generally feel a little better as your body has successfully combated the virus.  With Chemotherapy, you fall asleep with poison in your body. And you wake up with the same amount of poison in your body.  It didn’t go anywhere.  It’s still there.  In fact, sometimes I felt worse after waking up because as I was sleeping, more of my body was killed off by the drugs.  And all you want for days after receiving treatment is just to feel better.  Not to feel death throughout your whole body.  Not to smell it in your sweat.  Or your urine.  Or your breath.  I would smell the drugs as they worked their way out of my body and I felt dirty.  And tired.  And sad.  Starting to whine a little here.  Need a detour.

Last year when I began this adventure, I came upon a verse from the bible that has meant a lot to me throughout this struggle.  For those of you who don’t know, I am a Christian.  So I am sorry if my speaking about the bible makes you uncomfortable.  Well, wait - not really.  I’m not sorry.  It’s who I am.  Anyway, the verse is found in Romans.  Romans 12:12 to be exact and it goes a little something like this:

“Be joyful in hope, patient in affliction, faithful in prayer”

Even thinking about this verse now makes me somewhat emotional.  I have grown attached to these words and these words became my mantra as I struggled through my early symptoms and then onto cancer treatment.  When I was in pain from not being able to urinate.  Or every time I used a catheter.  And each time I felt like throwing up, I would run through this verse.  It helped.  It continues to help.  It reminds me what to focus on.  Granted, I had a few blow up moments for sure.  I told God that He sucked and that this should not be happening to me.  After all, He designed this body.  This is His creation.  Why isn’t it working?  But after I would have my little hissy fit and calm down, I realized being angry didn’t help me pee any better.  It didn’t heal me.  Blowing a fuse wasn’t the answer.  The answer was hope, patience, and prayer.

And I was right to have hope.  I was right to be patient.  I was right to faithfully pray.  After all, look where I am today.  Over a year and a half after all this has started, my cancer is gone.  Some of you may say that the drugs got rid of my cancer, and that’s absolutely true.  But the drugs didn’t sustain me.  The drugs didn’t keep my hopes up.  Not even close.  In fact, as I mentioned bluntly earlier in this post, the drugs sucked.  Cancer wasn’t the worst part of my illness these last six months, chemo was.  Chemotherapy was what I needed to endure - not cancer.  And these words found in Romans helped me do that.

So then getting back to my thoughts on Chemotherapy.  What do I really think about it?  I hate it and I curse it every chance I get, but it has taken away my cancer.  It has taken away the fear of losing my life to this horrible illness.  It has taken away the fear of never seeing my kids grow up.  It has taken away the fear of never growing old with Erin.  In the end, it has given me my family and for that I am grateful, bitterly grateful at times, but grateful all the same.