Tag Archives: Cancer

Medical Update: lots of questions–few answers

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Spent nine hours at the doctor yesterday. Spent a few hours at my oncology clinic and spent a few at the ER. During those hours they filled me with lots of fluids, lots of drugs, did lots of tests, and sent me home feeling much better than when I had started…and within two minutes of being home–after not throwing up for nine hours–I spewed into a metal bowl while laying in my bed. That always happens doesn’t it? Ugh, I hate that! But here’s the story of what’s going on.

For eight days I’ve been sick with debilitating headaches and nausea. Essentially for those eight days, every morning I’d wake up with a pounding headache. If I stayed on my back it wouldn’t hurt so bad, if I stood up the pounding would be so intense that I’d have to hold onto a wall to keep from falling to the ground. The first few days of being sick we found that the symptoms would begin to disappear close to one or two in the afternoon. But as the days went by the symptoms began to last longer as they also increased in severity. The nausea turned to vomiting and the headaches started to last all day and eventually all night.

That’s when we called my oncology clinic to get some help. They suggested that much of what I was experiencing was from dehydration, so they called me in for fluids.

Simultaneously as all this is happening I also went into the urologist because of my chronic UTI’s. And it turns out, wonderfully*, that when I urinate I am not fully clearing my bladder. This is bad news ’cause essentially this left over urine is a breeding ground for infection and cannot be allowed to stay. The solution? Straight Cathing. Or to say more clearly: learning to drain my own bladder two or three times a day by inserting in a catheter, draining what’s in there, and then ripping it out. Two or three times a day. Self Catheterizing. Ugh. The good news is that I talked the urologist into giving me two weeks to see if I couldn’t ‘figure it out’. He reassured me that there’s nothing you can do if your bladders not working and I reassured him that I’d still like the opportunity to get it fixed. So I was essentially given two weeks to learn to clear.

Ok, back to being sick. The fluids helped with the nausea but they didn’t touch the headaches. At all. So they sent me to the ER to get my head scanned.

At the ER, to make a long story short, my head scan came back clear (insert celebratory remarks here!) which still left us wondering why I was having headaches. My bladder issues got worse leaving us no choice but to do a straight cath to drain it in hopes that my bladder will start up working again. In the end the ER gave me a few new drugs to try and we decided to go back on the ‘roids in hopes that the reason my head hurts and the reason my bladder is digressing is because there is inflammation in my spine that the steroids were reducing and that is now (now that I’ve been steroid free for a few weeks) putting pressure on the nerves going to those areas.

So where I’m left now is with the blessing of celebrating a cancer free brain while grieving the loss of about a week and half with my kids, my wife, and my community. We’re still not completely sure why I’ve been getting headaches and we’re still not completely sure if my bladder is fixable or not.** Regardless, here I am, up early on a Saturday morning with only a tiny little hint of a headache and no nausea. Here’s hopin’ that today’s a new day of health and healing.

 

* Please note the sarcasm here

** I have not taken the time here to share the different things we’re doing to get my bladder working again. If you have advice or insight into this we’ll gladly receive it, but more often than not people share it under the assumption that we’re not doing anything beyond what’s been typed or shared. So please know this isn’t the case.

Article: The Things I Wish I Were Told When I Was Diagnosed With Cancer

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I cannot express how dead on this article is. I think I can confidently say that the author has captured my experience exactly–and has captured it in a way that I have not been fully capable of doing. Please read it, soak it up, and know that Mr. Tomczek is speaking on behalf of many of people. (you can read it on Huffington post here: http://su.pr/2SBve7)

The Things I Wish I Were Told When I Was Diagnosed With Cancer

Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery. Fighting for anyone to stick with you won’t cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You’ll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it “chemo brain” for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don’t understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You’ll cry together too. Then you’ll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don’t look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won’t have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won’t die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn’t be a game played on anyone’s terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won’t do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don’t have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they’ll forgive you. They get that you’re going through something they can’t imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren’t so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world — strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven’t spoken to since grade school will be in touch. Ex-girlfriends, former colleagues… even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

When you get to the other side you won’t believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You’ll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You’re going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You’ll be more productive. You’ll understand who truly loves you because they will still be there. You’ll want to meet new people that connect to the newly evolved version of your old self. You’ll want to let go of those that don’t “get” who you are now. You’ll feel a little guilty doing it. Then, you’ll move on. You don’t have time to waste. The greatest gift you’ve been given is that you now understand that and you’re going to make the most of every second. You’re going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.

For more on cancer, click here.

For more on Jeff Tomczek, click here.


Do I Want to Die?

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After getting our first good test results (ever) two weeks ago I went into a pretty deep depression.

Seriously.

Getting the good news sent me into an emotional nose dive that I still find myself fighting against succumbing to it.

That’s right, I was sad to find out that I might not be dying as soon as I thought.*

It took me a while to understand what was going on–why would good news bring about such negative emotions? Why was I feeling so lost at a moment when I should have been in the throes of elation? It just didn’t make sense until I realized something. I realized that after a year of living in complete ambiguity, never knowing what to expect from one day to the next, never being quite sure if I was surviving or actively dying, and never being able to count on functional health from one week to the next it didn’t matter whether it was good or bad all I craved was being able to count on what to expect for tomorrow…even if that was death. Living in that in-between place for so long was miserable and taxing and…well…when I got the diagnosis of 3-6 months, as terrible as it was/is, at least for the first time in a long time I knew where I stood. Sure I was dying, but at least I knew what to expect!

I don’t think this was a conscious thought necessarily, I don’t think I would have been able to actually articulate that I was glad I was dying. But what I discovered was that when I got the positive MRI result it immediately called into question the very thing that had been giving me solace. I don’t think I knew that I had been taking so much comfort in knowing what to expect until it was lost. Now let me quickly clarify that without a doubt all of this is an illusion, all of this is about perception not about reality. We cannot ever, in fact, know what to expect concerning tomorrow! (right?) And to make it even more silly is the fact that my good MRI scans do not even change anything about the 3-6 month projections in the slightest! In reality what these new and exciting scans do is powerfully remind us that there’s always hope.

And so I sat in bed sick (from those blasted UTIs) and sick (from those blasted emotions) trying to figure out why I felt the way I did–feeling betrayed by my own emotions, feeling confused by the strange feelings that were emerging, and annoyed by the fact that I was such a mess. Things would be more simple if I were just dying…right. I know, I know, you don’t want me to say that (and you definitely don’t want me to mean it) but the complete and honest truth is that the draw to normalcy, to consistency, and to clear expectations is a koolaid that’s easily drunk. Even if that koolaid is to die from cancer.

Again, there is no question whatsoever that the reality is that we’re all living from day-to-day, that those of us who think we can do life without the messiness of the unknown are living in denial, and that uncertainty or ambiguity is a part of being human. But oh, don’t we crave control?! Don’t we crave even the illusion of it?! Apparently I’ve been craving it so much that even death had an appeal simply because I could count on it!

I’m choosing not to write this blog from the perspective of “and now I’m all better”, “that was then, this is now”, or “I’m so glad I got over that”. The truth is that it’s still hard. I’m still fighting the sickness daily (both the emotional side and the actual infection side). Hopefully I’ll be better soon. Hopefully (and this would make all of this so much easier) the cancer will just go away and I can be done with all of this for good…don’t you think that would be ideal?

 

* Though the doctor was clear that while this gives us great hope, it does not directly change our timeframe.

The Gift of Good Test Results

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This morning I invited everyone to pray for us and the MRI test results that we’d receive later that day (Wednesday).

Well, for the first time (as far as I can remember) our MRI scans actually provided some good news! Turns out that the original larger tumor that splits my spinal cord in two (as opposed to the cancerous tumor sheath encasing my whole spinal cord) has shrunk by a little over a centimeter. The doctors were all shocked and very pleasantly surprised by this news because it’s fairly unexplainable. There is not much precedent for the drug I’m taking to have such an effect.

Where does this leave us? Well, honestly, we’re still one tumor growth spurt away from death or major paralysis but we’re also hoping that this develops into a new trend that will continue. This leaves us in a holding pattern that’s much better than the one we were holding onto last week.

My children’s responses truly capture the tension that exists within me regarding how to respond to this very good news. When we shared with them the results India excitedly exclaimed “Yay! I’m emptying my whole worry box! I’m opening it up and letting out all my worries forever! Up they go into the sky. Pop…pop…pop…” Whereas Jones’ retorted “I’m not letting go of any of my worries! They’re all made of steel and they’ll never go away.”

One part of me wants to let go, celebrate, and feel like everything has changed while the other part of me wants to hold on, not get my hopes too high, and stay in reality (that my back is still filled with cancer). It’s that tension that I briefly wrote about this morning–what does living by faith look like?

For now we’ve been given the gift of good news. It may only last a month, it may last longer. We’re still operating on a 3-6 month time frame, but oh man is it good to hear some good news from those blasted MRI scans!

Praying for Results

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I woke up this morning with an old hymn stuck in my head. Its lyrics include these words:

I care not today what the morrow may bring,
If shadow or sunshine or rain,
The Lord I know ruleth o’er everything,
And all of my worries are vain.

 

Refrain:
Living by faith in Jesus above,
Trusting, confiding in His great love;
From all harm safe in His sheltering arm,
I’m living by faith and feel no alarm.

 

Though tempests may blow and the storm clouds arise,
Obscuring the brightness of life,
I’m never alarmed at the overcast skies—
The Master looks on at the strife.

 

I know that He safely will carry me through,
No matter what evils betide;
Why should I then care though the tempest may blow,
If Jesus walks close to my side.

 

Our Lord will return for His loved ones some day,
Our troubles will then all be o’er;
The Master so gently will lead us away,
Beyond that blest heavenly shore.

Today we find out the results of my last set of MRI’s. And I find myself wondering: what does living by faith look like? What does it look like right now, in this moment, today?

I’ve been told by some that I’m healed, that the tumor is gone. I’ve been invited by them to hold onto this truth—that I’m cancer free and to live into that reality until I experience it. Does living by faith mean that I hold onto this reality fully and completely without wavering and without hesitation? Am I not living by faith if I do not hold onto this truth? In other circles I get patted on the back when I ‘bravely’ say that I’m ok with dying, that I don’t fear it, and that I know that death is not my ultimate end. Is that what living by faith looks like?

I want to be healed. I want to be done with this shit. I want miraculously clean MRI results today. Please pray with us that this is what we’ll see later today. But, again, (as I probably say all too often…and probably for my own neediness than for your benefit) my hope is in Jesus, for who he is and not for how he can fix my temporary body…but a nice tune up would be welcomed.