Let’s Hear It For the Caregivers!

morelikecantcer's avatarKim's Blog

One of my favorite hobbies nowadays is reading cancer blogs. Call me weird if you want, but I love reading other people’s experiences and struggles in the ridiculousness that is cancer. I was struck by how many of these blogs (well over half!) are written by the caregiver, the one struggling alongside of us, the cancer patient.

As someone who knows the difficulties and hardships that come along with stage 4 cancer and really, cancer in general, I just need to speak out on behalf of my fellow cancer patients and give a HUGE and well-deserved shout out to our selfless and amazing caregivers *insert virtual applause* (:

You guys are on call non-stop. We kind of get all the credit, we are the “fighters”, but people need to know that there’s a lot going on behind the scenes. Especially for those of us with little kids (and on my…

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Pain, Love, and Acceptance

During last admission, round #2 of chemotherapy, an RN walks into my room who helped me through my darkest hours on my first admission. Her presence brought peace to my soul. Knowing her capacity for a healing touch, allowed me to rest.

I had one moment first round of chemo where I had an emotional melt down. It was a terrible sight to behold and to experience. I wouldn’t wish that on anyone. Somewhere between the intersection of fatigue, fear, medications, combined with the reality that I could be dead in a short while if the chemo didn’t work, pressures of debt, how my family is hurting for me, the reality my life was on hold, rational questions of what if I lose life insurance and leave horrible medical debt for my wife and daughters to manage, and, the inner trembling from chemo and steroids, my world crashed hard and sudden.
I couldn’t see the inner turmoil coming and could not have stopped it if I had seen it coming. She listened as I agonized over the natural darkest emotional and mental human fears. I believe these fears are common but not spoken of often. 

Any person can only carry so much burden. This deep weight moves beyond what a human can control. I watch it in the parents in the NICU where I work. I do for them as she did for me. When the moment hits and it is time to let the worries and angst out, she slowed down to listen to me, to honor me, as I attempt to do for NICU parents. It is a nursing “holy moment” where a tender stressed heart is placed on a table raw and bleeding. It is an honor to breathe just a moment of hope back into a weary soul. Being refreshed is letting one’s guard down to receive the refreshment.

Moments like this can help restore hope to a burdened soul and build trust. What a great opportunity to touch another in their most vulnerable moments. The patient can be guided beyond an uncontrolled release of pent up emotions and thoughts, and sanity brought back into vision. Hope is fanned back to flame; just a tiny flicker of hope is powerful to regain momentum for a heart stalled with weighty matters.

Facing long term struggles where your life is on the line, you will have your moments where something deep inside your being powerfully emerging spontaneously to stop you in your tracks. Staring directly into the depths of our humanity disrupts immediate plans. Your disruption might look different than mine, but you will have some time and place when you unexplainably withdraw and shut everyone out, or burst forth with anger, or move into a depth of fear and sorrow, or move into denial and carry on as if you have not a worry in the world, or you will have this messy display of unconventionally powerful emotions erupt. You cannot contain the cries of the soul forever. These cries demand to be heard.

I call this “the other inside of me.” This stranger inside (although it is me) can take over my body and make me do things that cause me to feel very much less a man and a poor example of how to behave. I know it is human nature; I know in reality I am more of a man for walking through this and facing my fears and pain, yet the process is so…messy. Ugh! Who likes to cave into convulsive releases of emotions and thoughts with such pent up power? It has caused me more than once to consider if I was losing my grip on reality when I have those rare moments of losing control.

This other inside of me is sneaky. I can’t really detect it most days. I believe Freud called it the “id.” Some call it the subconscious. I like to think of it as a part of our complex human spirit, something residing deep within, some other part of me that is still me, but with its own independent operation. I believe there is some function in the human soul that is so deep that it is almost like a feature of my own being that maneuvers independent of me, hard to detect at most any moment, yet is very much alive and active. When it desires to rise up and be known, there is no stopping it from rearing its ugly head. The cries of my human heart emerge whether I want them to or not and the force of the emergence is usually surprising to me.

In younger years, when I heard the concept of “an inner child,” I scoffed at the thought. Well, maybe not fully disbelieving, but I knew it wasn’t real for me and suspected that was an explanation, an excuse, to allow certain behaviors of immaturity for another person when they surfaced. Grow up I would muse. Don’t be like that.

Other times, what I thought was a touch of compassion and understanding on my part would emerge and I’d “allow” for such a concept for abused people who had to compartmentalize their lives in order to maintain sanity under extreme circumstances. This really wasn’t compassion on my part as much as an immaturity and lack of personal experience with my own life. My understanding and compassion have changed over the years as I’ve had to deal with my own trauma and problems. God and many turns of events in life have taken care to show me how I have this seemingly “other” (a young man inside?) present that will catch me off guard on rare occasion.

I’ve been humbled over the years. I finally have had enough of my own junk build up deep inside, only to burst to the surface over my adult years to the point I am a believer in this other, this inner psyche, the subconscious. Starting in 2008 with my initial Burkitt’s diagnosis, inner pressure continued building out of my control through circumstances that ensued for years. And now with a second diagnosis of Burkitt’s where I am undergoing chemotherapy again and needing a stem cell transplant, this is it for me folks. It is all or none. I am at the end of my rope and not much else medically awaits me but a most difficult path, and that is if it even works. No wonder I had a powerful cry of my inner man explode beyond my control spontaneously late one night.

Consider the following. When we have something so far beyond our control happen, death in the family, medical horrors, torture during war, or whatever the case may be, it is human nature to kick into a high gear of protective mechanisms. Despite our best coping abilities, something is deposited deep deep inside the human soul, something that shakes us to the core of who we are. We choose mentally how to respond and behave, yet under these best choices we make, the inner being echoes with untold aftershocks.

Many men and women who return from the front lines of war are given the label of Post Traumatic Stress (disorder), a recognition, a nod if you will, that they experienced horrors that do something inside the human psyche causing erratic behaviors for years or for life thereafter. It simply changes them from the inside out. Some men and women control the distress better than others. I have heard many WWII families over my life speak of how so and so returned “changed from the war;” they were never the same. Nightmares would randomly erupt. Their behavior would have odd “ticks” as the old timers might say. It was the wording of the time to say that something profound had changed in the core of the person and there was no going back for them, only a management of their current state of being.

I used to believe the label of PTSD was reserved only for persons in a military or battle setting, severe trauma need only apply. I have modified my belief on this in recent years. After my first battle with Burkitt’s Lymphoma in 2008, I came out a changed man. Eight months of intensive sickness and chemotherapy took its toll. I mentally compensated, didn’t do a really good job, but made it through. I was an angry man. My emotions were thin and on the surface. As I look back, I can see where some part of me had been changed and a form of death occurred inside. But the death that had been inserted into me interestingly enough caused a cry for life to arise within me even stronger.

Cancer was just the beginning of the conflict between torment and meaning. Then came the loss of loved ones and new medical problems after I was through with chemo. I thought when one was finished with chemo, their lives returned back to normal or they died. I was wrong. For many, there is a “new normal” that has to be accepted (or fought against) based on the aftermath and severity of the battle. Alive, but in a different body scarred from an intensive medical regimen. Overwhelming life changes scar the emotions and change thoughts.

It took a while for my natural defense mechanisms to break down under continued distress of losing loved ones, new onset of medical problems, and then a powerful whopper hit me: loss of my faith in God. In my most fundamental beliefs as a Christian man, I changed. I thought God was no longer real or cared, that he was not a good Father. I rejected Him and His love. How can a good God allow such things to happen?

Mind you, it wasn’t what happened with me that caused the final blow to my faith, it was what I saw happen to other sweet sincere people around me combined with what happened to me. Where was His love and goodness? I found reconciling pain and love to be intolerable and could no longer listen to sterile proclamations of love without the recognition of the pain in life. How can one be separated from the other? 

I finally had someone suggest to me in the Burkitt’s Lymphoma private group that I had a type, a form of PTSD. My initial reaction was to scoff. But then some still small voice began to speak gently to me to consider the wisdom of such a thought, consider it being presented as a gift to me. A certain curiosity to study what PTSD was about, how it impacted people, and how it manifested began to surface to better understand trauma impacting my own heart.

A crack appeared in the wall around my heart. I began to loosen my narrow understanding and realize it very well might apply to non-military settings. This was revolutionary to me. Can a human soul not in the front lines of a military exchange become a hardened angry entity, a shadow of what it was created for? Can circumstances in a civilian setting produce similar results as what occurs in a military battle for life and death? Can I develop my own “ticks” and compensatory habits to cope with deep wounding, or the perception of such?

Then began a revolution of understanding in my own mind and heart. People can be traumatized in non-military settings. There is a limitation of pain that the human soul can take before some kind of alteration occurs to the inner being, some kind of energy builds deeply in a man or woman’s heart. The resulting pain has to have its day in court, of coming forth and saying “no more, I’m really deeply angry/hurt/wounded/suffering and cannot sit still any longer.” What was building slowly and usually imperceptibly suddenly emerges as this strange other beast, something foreign to me that I don’t want, can’t contain, and have to deal with anyways.

Consider a dam. It is constructed to withstand most any circumstance to stop the flow of a great power, natural surges of water, forces nearly unimaginable, and energy unending. Yet under the right circumstances, the dam can remain intact yet be overrun with rapid surges of extreme amounts of water. In rare moments, it gives way and no longer can hold back the flood. Everyone, everything, has a limitation to how much it can withstand before being over run or broken completely. There is only so much energy that can be contained before it will take a natural path of release.

One of my conclusions I’m currently working under is that the opposite of love isn’t hate, it is unbearable pain and separation. I don’t believe pain comes from hate, but the opposite is true. Some kind of painful event or series of events manifest, causing such a depth of pain that bitterness can set in, hatred, anger, mistrust, and deep fear.

I am a changed soul. I am not who I was when I began chemo. I am not the same man I was after the loss of loved ones. I am not the same man I was after learning of my permanent changes to my health. I had to study, to search, pray, work hard at times to ask “why Lord, why?” My concept of what is love has been steadily evolving. This is hard work, continual hard work. 

Getting stuck in pain is the real problem I conclude at this moment in life. Setting up a camp and staying in a broken place is what stalls a human soul to corrupt in one location. I finally had to come to terms with the reality that life isn’t fair. I eventually moved from the “why” to the “what now,” what can I do with what I have left with my life and those around me. My resolved and focus switched from the why to the what now, how can I accept my lot in life, find joy and love, and move forth accepting my place in life despite overwhelming changes. I had to let go of my right to hold onto pain and all the tentacles it spread.

Acceptance is powerful. I can make the next best decision. Such small good decisions lead up to bigger change and acceptance over time. I found I had to get out of my small world and begin to help others.

I made one wrong assumption though, thinking my giving back was to be on a big scale. My impact would somehow be in the form of a book, speaking platform, or something with a public measure. Instead, my giving back was helping another person make it one step at a time. One person at a time. One phone call at a time. One email at a time. One conversation at a time. It was in these one on one interactions that I started finding meaning in life. Each seemingly small interaction produced encouragement in others and my encouraging them brought life back into my own soul.

And in the finest fashion of nursing and medical health, this RN last admission was able to breathe one on one in a quiet dark small hospital room, some life and hope back into my spirit.

My soul had its night in court last admission. It can only take so much before it has to discharge this energy and pain. It indeed burst over the natural defenses and it was a miserable (yet healing) experience in the hands of a skilled caregiver. I thank God for compassionate people like my nurse who gave of her heart and time to minister to the darkest part of my human agony.

Can I be such a person to another wounded soldier in life? Can you be someone to make a difference when someone has a meltdown beyond their control? Can we be Jesus in the flesh, a Mother Theresa of sorts, to those in the most vulnerable moments? Do we need large platforms to get something significant done? Can helping just one or two people a day in small seemingly insignificant ways help them change and accept who they are and how to move forth in life?

May it be so.

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Medical Update 7.28.14

Round #2 of chemo has gone fairly well. Not too many glitches. I’ve felt fairly strong overall. Taken very few medications for pain.

The one factor I don’t like and is beyond my control is my blood sugar level. They have me on massive doses of steroids. The cortisol (a hormone) in the steroids causes my body to become insulin resistant or causes to much sugar release (or both). I’m on insulin several times a day. Not used to that.

Spoke with a dietitian at length. She assured me there wasn’t anything I was doing wrong or could do different with my diet. Even if I ate one piece of lettuce daily, my sugars would be out of whack. She stated repeatedly it isn’t from food ingestion, but hormone therapy (steroids).

The knot on my neck is a little bit smaller. Yes! I like this. I wish it would go ahead and melt away quickly, but I suppose that just isn’t going to be the case. I am for sure going to receive 6 rounds of chemo at present, possibly eight. 

I have watched a few members of the burkitt’s lymphoma society get to a point in their therapy where the tumors quit responding and they have to switch to other regimens of chemo and start over, so I am not out of the woods yet. I have hope, and try to remain honest in my estimate of the situation. 

I did get my ARA-C (cytarabine) infused into my cerebrospinal fluid (CSF) yesterday afternoon. That isn’t much fun, but not as bad as lumbar punctures. My central nervous system gets better over all chemo coverage by going through my Ommaya and it

The bump on my head is a silicone disk connected to a tube that travels to the middle of my brain. Chemotherapy is instilled into the CSF (fluid) in the middle of the brain

The bump on my head is a silicone disk connected to a tube that travels to the middle of my brain. Chemotherapy is instilled into the CSF (fluid) in the middle of the brain

is relatively simple and straight forward. A few headaches persist, but that is part of the package.

The initial stick stings a bit, but isn't as bad as a lumbar puncture by far. Clean, simple, and in every time. No "fishing around" to find the right spot.

The initial stick stings a bit, but isn’t as bad as a lumbar puncture by far. Clean, simple, and in every time. No “fishing around” to find the right spot.

The oncologist is inserting the chemotherapy ARA-C right there. It makes an odd bubbling noise right in the middle of the brain with equal sound to both ears. Odd.

The oncologist is inserting the chemotherapy ARA-C right there. It makes an odd bubbling noise right in the middle of the brain with equal sound to both ears. Odd.

I’ll be going home Tuesday, tomorrow. I will come back for the next round 21 days from this last Thursday, so that puts me back in the hospital for another 6 days starting on August 14th, coming home the 19th if no complications. 

If all goes by the book, I should be eligible for a stem cell transplant (if they find a donor) by late October. 

I value and appreciate your support and prayers. Thank you all so much for all the help and love.

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Submitting to Round #2

I was admitted to room 728 in Harris Methodist, Fort Worth Texas, Thursday July 24th. This is my second round of chemo. I anticipate a minimum of 6 rounds, possibly 8. The goal is remission, then move to a stem cell transplant. 

The admission went well. The nurses are super kind. I’ve noticed over my career that the area one works in brings out a certain style of nursing. Oncology is noted for kindness, sympathy, sweetness, a desire to make the patient happy at all cost, and a fairly meticulous approach to each interaction with the patient. I witnessed that in 2008 and now again in 2014. I love oncology nurses. I considered trying it out myself after 2008, but wasn’t sure I would be able to handle it emotionally. Hits a little too close to home.

I discovered the nurses haven’t seen many “double lumen” ports. My central line, or port, is buried under the skin. It is not visible to the naked eye. Some central lines come out of the chest and the tubes are visible. Mine isn’t. Double lumen means two individual ports with their own separate tubes bundled so that it is one package with two channels. Think of an interstate with busy traffic flow. Although it is one interstate, it is separated by a strong cement barrier to allow two independent flows of traffic. Functionally two independent flows yet operates and built as one unit.

Each channel has to be accessed independently. Put another way, two sharp long needles, one for each channel/lumen. The nurses here haven’t seen too many double lumen ports. It isn’t obvious to the naked eye. I didn’t think to mention it, assuming they knew. My mistake. So they accessed one port, it flushed well (yummy tasty preservatives in the saline), but it wouldn’t draw back for blood return.

It wouldn't return blood, so they couldn't start chemo

It wouldn’t return blood, so they couldn’t start chemo

I mentioned accessing the other. … silence. “You have a double lumen?” Yep. “o.k.” Innocent misstep as she would have brought the equipment to access both ports simultaneously.

Since the port wouldn’t return blood, it couldn’t be used as is. Thus began a process of accessing both ports, instilling various medications to open up the channels to allow blood flow to come backwards for blood draws. The “big gun” of medications is named, in short, “TPA.” Think of a liquid roto-rooter gel you put in your drain to unclog it. Obviously very different chemical structure, yet the same basic goal: eat away at whatever is impeding the flow to improve the flow. 

Here comes change of shift. The night nurse walks in, tries the ports out, and they not only continue to allow easy flow of saline (yummy!) into my body, but walla! The blood is now being pulled back out. This was before they instilled the big gun: TPA. Instant relief as we can now continue this process and get it over with. 

This is the second pic I took. The first one, I didn't smile. She gave me a look and asked "why didn't you smile?" Being married many years, I said "yes ma'am," smiled, snapped another, and peace was kept.

This is the second pic I took. The first one, I didn’t smile. She gave me a look and asked “why didn’t you smile?” Being married many years, I said “yes ma’am,” smiled, snapped another, and peace was kept.

Here comes the drugs. Benadryl: 25mg IV, Decadron (steroid!): 10mg tablet, Solumedrol: 20mg IV (another steroid!), Prednisone: 60mg (we got into a focused conversation on the need for this one and cooler heads prevailed, no need for 3 steroids all at once, so this was ultimately held to my satisfaction.) Then comes Xanax: 0.25mg to counter some of the steroid hyper effects,  Tylenol: 650mg (has no effect on me, might as well drink water), and then we wait while all these premeds take effect.

Then the start of chemo. I’m getting drowsy, shut the computer down, turn over to my side, and fall asleep while they begin Rituxan: 750 mg IV. Powerful stuff.

Has a half life of 22 days. Powerful stuff

Has a half life of 22 days. Powerful stuff

I awaken about 2am. By 5am, I’m working on pictures, this blog, drinking coffee, and the Rituxan is done. Now begins three days (I think) of the red devil. She suggests I take a quick shower before the three day continuous infusion begins. Done. Feel much better.

I’m waiting for breakfast to arrive. Enjoying this moment where sickness hasn’t begun yet. I’m sitting next to the window. The sun is rising. All is well. I’ve submitted to the process for round two. 

 

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Heightened Sense of Life

I was thankful to wash dishes today. Consciously thankful. I was aware that I was consciously thankful for something as simple as washing dishes after a delicious meal. I didn’t hurt as I stood at the sink. I studied the water. It felt good on my hands. I was glad to contribute after a tasty meal my wife cooked. I was grateful for something as simple as washing dishes, consciously aware of my gratitude. I was “in the moment” in every sense of meaning.

I felt rather decent today. I was consciously aware that I felt somewhat almost normal today (yesterday, not so much). I felt halfway normal sitting at the table eating Green Chili Enchiladas Montadas. I slept 11 hours last night (with the aid of some tiny tablet) and woke up refreshed. I went for a walk about 1/2 of a mile before the heat and effort hit me.

I’m so aware of life right now. Consciously aware in my mind that I am alive and grateful to be here, doing such minor things as dishes, holding the ladder for my wife, or offering someone encouragement who needs a touch of hope for tomorrow. 

I am alive right now, vibrantly alive, more so than ever before. Amazing how the contrast of death can bring so much life “awareness.”

This is my brain on chemo

This is my brain on chemo. Also known as Green Chili Enchiladas Montadas. Delicious stacked enchiladas.

It is astonishing to me how something so terrible like cancer can change my perception on life. Contrast, my friend, has a way of highlighting differences in anything. My primary hobby is photography. Follow the link in the menu above to see my Flickr site. Contrast is one common useful approach to “bring out” certain aspects of a photo.

Cancer “brings out” certain aspects of life. Cancer is about death, yet I feel I am now more perceptive of life, of the small things in life, and richer meanings behind them. I am pleased with the lack of pain the last few days. I haven’t taken pain meds lately. I am mentally aware of each moment as being precious and life as being fragile and of great value.

Our days are numbered and we all face physical death. While knowing this reality and nodding at it as an easy common knowledge much like a coffee table item to discuss, it is typical to get busy and focused on the next in life. The next appointment. The next day of work. The next stop at Starbucks. The next song I’m going to play. The next whatever I feel is important. Cancer has a way of being a brick wall to my lists of “nexts.”

So many things compete for our attention and mental energies, causing an unawareness of the Great Next that can happen to any of us at any moment. Trust me, when you are faced with the Great Next, be it in your own body or to those you love, life grinds to an amazing slow movement and the volume of life goes insanely high. Faced with our humanity, the conscious reality of the fragility of life goes into high gear when the next diagnosis of a terminal illness (or the horrid bad news of an untimely death in the family) hits like a ton of bricks.

Facing my humanity, the idea I could be gone in just a few months if things don’t go like I want, is a brain scramble and a heart scramble. I’m doing well most days, keeping my chin up, using natural denial defense mechanisms to not really think about the possibility of dying an early death. I would think that a good thing! Punctuated against denial is this deep underlying tension with brief moments of the magma of fear that swells forth and bursts out through my tears and quick convulsions of emotional turmoil. Even these emotional moments of pain are heightened for me, almost like a purging of the soul of the built up tension that stays just below the surface, much like a volcano waiting to erupt.

The good side of this whole mess, if such can truly exist, is the heightened sense of life. Everything is so magnified right now. Food is better, relationships seem better, sharing some cool ranch Doritos with my daughter spontaneously after she gets home from work, seems rather fun. The kindness of friends, family, and strangers is better. It is all so rich in color and amplified in volume. Somehow the flowers look more colorful. I’ve taken notice of our yard this year. I am so thankful for family and friends. A jar of homemade dewberry jelly has brightened many mornings these past two weeks.

Even washing dishes was a moment of joy. Odd thing to me.

My spiritual life is much more heightened at this time. Deep thoughts of why this, how that, what if … God? So many questions. I naturally look at the common mankind question of “why suffering Lord?” Not that I expect an answer, but that is still in my heart. I want to connect even more spiritually with others. I want to now pursue with greater intensity my hearts greatest desire: to love God, others, as self (Mark 12:28-31). How to do that? What does that mean?

Something opposes this experience, though, something I am consciously dreading: I return to the hospital this Thursday the 24th. I can find little connection with being consciously thankful knowing how sick I’m going to be physically for a few weeks. I know I should be thankful as the chemo is the chance I have to live. Yet I find nothing but dread inside my heart as I submit to another round of necessary poisoning for life

Maybe I can work on my thought life a bit and find a reason to be thankful for the ill that comes with chemo. Getting sick is necessary to becoming well. Contrast. Submitting to something outside of my control is required. 

Any ideas on how to find ways to appreciate mentally the chemo regimen and soon to come (I hope) stem cell transplant? Please email me your ideas to walkingthroughthistogether@yahoo.com.

(the photograph at the top was taken this spring at the Japanese Gardens in Fort Worth, TX)

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Thou Shalt Not Touch

I spoke with two transplant nurses on Friday. We covered many topics related to stem cell transplant. Let the fun begin. I declared my desire to have it done at MD Anderson since they do a great number more than anyone else and might be better suited to handle a complex case like mine.

They reminded me of the many things that are important to me now and during my entire chemo + stem cell transplant journey: no crowds, no sick people around, no fresh fruits and vegetables, and…. 

Say what?

I love my fresh fruits and veggies! March 1st, 2014, I became mostly vegan. Mostly. I avoided almost all meats, milk products (which I have done for years being lactose intolerant), processed foods, and focused on eating whole fruits, vegetables, nuts, and legumes. I had just set up early Friday morning my new nutribullet (and had tried out a concoction) and the juicer and mixer station in my kitchen, all of which were donated kindly by others to help promote optimal nutrition. I was so pumped. Now they sit silent. Staring at me. Wondering why they are being ignored.

I made great progress in my effort for 3.5 months to revolutionize the nutritional aspect of my life. I did not set out to be purely vegan/vegetarian. I figure an 80/20 mix is good, staying away from trashy foods. It reset my palate, I started to appreciate food so much more, lost some weight, gained energy, then this pesky cancer thing resurfaced. Dang cancer.

Tonight, I felt strong enough to sneak into a local grocery store later in the night. I surveyed the parking lot, few cars, check. Wiped my hands and basket down for 2 minutes with antiseptic cloths, check. Walked by the nectarines and fresh fruit in season to grab some fresh goodies…

Shazam!

The twinge of pain I felt as I realized that most of this section is off limits to me. Well, not really, just the portion I can’t cook. If I can cook it down good, then I can eat it. I stopped the cart for a moment and just stared, feeling awkward in a place I found so much joy in just one month ago. A twinge of sadness surfaced. I decided to stare at the untouchable only would add to my troubles. I swallowed my emotions, walked through this section taking big nose hits of the various fragrant offerings, then went straight to the laxative section. That always fixes things.

Those peaches and nectarines were fragrant and beautiful, just singing a sad song of separation waiting for me to return triumphantly some some day to gobble as many as I can. 

**sigh**

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A Symbolic Moment

There are things we can’t control in life. Having cancer certainly ranks up there. The inevitable hair loss certainly rates. Loss of control isn’t easy.  Symbolic moments crystalize key events in life. I just had a big one tonight.

My daughter says “Dad, you have hair on your shirt.” I was wearing a dark shirt from work. My hair stood out against it. I reached up, right in the middle of our kitchen, and smarted off while pulling sharply on some hair: “it isn’t coming out yet.”

I stared at the hair clump in my hands.

I smiled and posed for the camera. I pulled more hair and made the worst hair jokes I could muster. Really, not a big deal. Would rather pull the hair out or have it shaved off than have two nights of hair grind into my pillow.

The comments on Facebook are fun. I appreciate the bravado and the energy that comes with the symbolic losing of hair. I called my oldest little brother and we spoke a while.

I can’t control much in life truly. I can control my reactions to what happens, right? Well I can try anyways. Sometimes, there are depths of the human soul that are beyond the reach of any rational choice. Life circumstances can shake someone deep inside for any given reason beyond their control. 

I’m a happy guy 9 times out of 10.

This is that 1 of 10 I can’t seem to reach deep enough to touch the depth of sadness that is bottoming out. I’ve had a trap door in my soul open up and let loose the ugly outward symbolic loss involved with having cancer.

I’ll be ok. It is just hair. It will grow back. The sadness will depart. I’ll keep my smile on, go curl up on the couch, get some rest, and let the likes on Facebook climb higher and higher while I attempt to control that which I cannot control.

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B.S. Meter

I have this theory: we all have a “BS” meter built deep in our souls. Think of a gauge with a needle that swings on one end from 

a slice of baloney

to the other end

with a pile of manure

As we go through life, this natural inborn gauge (our innate trust) swings from “not going there (manure pile)” to “might give that some consideration (baloney is edible, after all).”

You are going to hear me reference my BS meter theory from time to time. I generally will state to the effect “smelling some baloney” (might be possible/worth consideration) to “stepping in manure” (don’t give it a second thought, not worth your time, general Texas malarkey)

I figured I might as well get this phraseology out there. Cancer patients (and their poor blessed families) get bombarded with every form of cure for cancer. Hey Robert, you should try standing under power lines, drink spring water from Turner Falls, or watch grade B science fiction on an old Zenith TV. Oh my word, you would not believe all the things I am hearing.

Again.

I went through this once already in 2008. I get told of religious everything, physical something, and general nonsense nothing. And that’s no bull.

Not only do cancer patients go through the rigors of medicine for healing, we endure the pressures of people’s good intentions with their often not so gentle prescriptions for cures, as if their zeal will convince me to change course.

And it is all a conspiracy as to why their product/belief/whatever isn’t being propagated at the local 7-eleven. For free. Conspiracy I tell you! Cover up! Cheap or free is the most common reason I hear for why their answer for cancer is not promoted openly. It’s too simple, not able to be controlled, too readily available, yet not prescribed by those in systems of medicine because no one can control it or make money off of it. Or some pile like that.

I may not tell you where my meter lands with your suggestions, but I do feel the needle swing in my heart with each email, conversation, and video. 

You want to know something even more mind blowing than receiving daily suggestions on what might work to cure cancer? Some of these suggestions might even be wrapped in a slice of baloney to chew on. And that’s no bull.

 

(picture taken this May on the corner of a San Antonio Street)

 

Posted in burkitts, cancer, chemotherapy, humor, lymphoma, Uncategorized | Tagged , , , | 5 Comments

Poisoned to Life

My mom made a comment recently concerning chemo. She used the phrase “Poisoned to Life.” I found that interesting.

I suppose the general purpose of any poison is to kill a target of some kind. Such is chemotherapy. It sure is about to kill me this time around. Woof.

I had all the terrible deep effects set in around 1am Tuesday morning. Mind you, I wasn’t feeling good before then, but there are general symptoms from chemo and then there are the chemo storms that set in. Weakness that is hard to describe, headaches, pain shooting around the body, unable to sleep, so tired I want to sleep, trembling on the inside, realizing I’m hungry and thirsty yet not feeling like getting up to get a drink of water, sores in the mouth, and maybe a few other side effects I won’t mention. I sat in my recliner and rode it out. What other choice did I have? Well, the ER did cross my mind

I felt a bit better during the day, but not good. Slept some, rested, and basically “hung on.” About 7pm yesterday evening give or take, the inevitable happened:

 

bone pain

Those who have been in my shoes know those two words can strike fear in the hearts of the mightiest fighter. It took me a while to figure out what was causing the pain. As the pain spread through my lower back, I was trying to suppress thoughts like “is this the cancer spreading?”

The mind is able to naturally ponder some seriously bad stuff.

The pain moved to the front of the chest and then included the back. It came in waves, pulsing. It was when it was going through my chest bone that I finally had this “aha!” moment to realize that ultimately, it was ok. It was going to be ok. It was bone pain.

Neulasta is an injection to stimulate white bone cell growth.  I got my shot last Thursday.

On one hand, I’m receiving poison to kill white blood cells, on the other hand, my bone marrow is being forced to work overtime to produce extra white blood cells.

Crazy, eh?

Lymph cells are the problem. They are a specific kind of white blood cell. White blood cell is like saying “military,” lymph cell is like saying “The Marines.”  We have various white blood cells (our general military) and the lymph cells are growing at an exceptional rate. Cancer. Lymphoma.

To poison me back to life, a chemical weapon is being dispersed that takes out a huge segment of my entire white blood cell count. Just nuke ’em all.

Neulasta, then goes back and says “hey, we need more of the Army branch, just army only.” Neutrophils are like this special branch of the military that can make a big difference in reducing the amount of infections a chemo patient suffers. Neulasta makes the body produce Neutrophils at an abnormally high rate.

Poison all fast growing white blood cells, target some specific ones to grow back fast, take Zofran for nausea, eat some of cousin Julie’s good homemade pear preserves this morning, and keep the hydrocodone close.

A cute baby can make anything better. Meet Logan. Isn’t he adorable?

Now back to regular programming from my recliner…

Posted in burkitts, cancer, chemotherapy, lymphoma, Uncategorized | Tagged , , | 8 Comments

Walking Through This Together

Taken on 6/28/14 in Granbury when we had a quick family get together

Taken on 6/28/14 in Granbury when we had a quick family get together

Maybe this blog can help simplify communication. This is a change for me. I was diagnosed with Burkitt’s Lymphoma this summer. I’m going through chemo. I have released a few Facebook updates, email messages, a few videos, and feel a need to attempt to simplify for many the manner in which I communicate.

 

Can we agree that change is a constant?

 

I was so tired, but a good tired, when I laid down to sleep around 10pm. Change. It is now 2:55am and I’ve been awake feeling sick for over an hour. I feel achy, feverish, suddenly weak, pain going through my body, mouth sores bothering me, and uncertain of my future. This is a change from how I went to sleep. Took some Tylenol, hydrocodone, something for anxiety, checked my temperature twice (98.7), got comfortable in my recliner. I now realize that the effects of the first round of chemo administered to me has kicked in and is taking deep effect. I don’t like this part.

The rest of the house is asleep, as they should be. I don’t want to bother them. I know if I need something, I can ask. For those who have been in my shoes, you understand the tug between needing/wanting help and not really wanting to bother others any more than absolutely necessary.

I have many fears and thoughts at this moment going through my mind. It isn’t a panic situation as much as (I suspect) a steady drumbeat of age old thoughts that go through the mind of any rational chemo patient. I might share these some day, but I need to get my family and loved ones used to the idea of my sharing rambling thoughts on here and not reading too much into them.

I’ve quit fighting change. It is a constant. Roll with the punches.

Maybe this blog will help the Vlog will help the FB will help the email will help the family will help me to simplify things a bit. Maybe this change will help me to make it through this journey a little more connected with others.

My first journey through Burkitt’s Lymphoma was in 2008. I was stage IVb when I began my chemo. I spent the better part of 8 months in a hospital. I had HYPER CVAD +R chemo and it was intense. I was a sick man. My method of communication then was only email or phone calls. I had no Facebook account and wasn’t social media savvy. Today is another day.

I am on DA EPOCH +R protocol. I am stage 2 this time, not as sick entering the battle. I am entering my second battle with Burkitt’s after 6 years of remission. This is indeed a rare event. Not unheard of, but rare indeed.

If I am able to enter remission, then I will most likely be a candidate for a stem cell transplant.

I’ve learned people need people. Life isn’t fair. Encouragement and hope are vital. Many are looking to heal their own battle scars and losses by walking through this together.

I offer myself to help. I ask you to help me. By walking through this together, we can all grow stronger

Posted in chemotherapy, healing, hope | Tagged , , , , , , , , , , , | 2 Comments