I began this writing on Wednesday, October 28th, sitting in a plush recliner in familiar surroundings. I am receiving my IViG infusion for the first time in one year. I find myself reflecting on the last few eventful days, while four different TV’s are droning the usual American fare of instant nothingness. Lets go backwards in time a short while and pick up where my last post left off.
Receiving my IgG infusion
After my last post, things went further downhill medically. Seems the albuterol puffs weren’t keeping up, so I broke out the nebulizer hoping to achieve better lung clearance. My antibiotics and steroids were finished, but I was weaker and getting sicker. By Sunday, I gave in and went to the urgent care yet again (3rd visit in two weeks), receiving two new antibiotics and instructions to follow up at my primary care doctor.
I arrived the next day at my primary doctor, who threw me for loop. He stated to the effect that I’ve been treated for pneumonia for how many days now, 12 or so, and I’m getting worse? What am I waiting on, the second coming to get some definitive action? His body language and wording suggested he was serious.
He reviewed the big picture and then lowered the boom. Three different antibiotics, one round of oral steroids, breathing treatments, inhaled steroids, and the pneumonia persists, sinus drainage continues, getting weaker, and … ? He sat there staring at me, allowing for an uncomfortable pause. “We’ve treated this as an outpatient and it has failed,” he said. He used the term “outpatient failure,” and his words started to fade as I knew what was coming next. Time to go to the ER and get hospitalized. I was not happy.
I walked out of his office feeling defeated. I wasn’t sure I was up for the whole ER hospital deal, with all that involves; just don’t want to go there to be honest. I’m really over all this medical stuff if you want to know the truth. I farted around a bit, delayed, and tried to talk myself into some other course of logic. Certainly this will all pass.
I finally concluded he was right and no other reasonable option existed. My body isn’t healing, time was marching on, and life had come to a stand still. There have been no signs of progress. Why not make a definitive intervention and get something done, get over this, and move on.
I decided I wasn’t going to just any local ER; if I was going to do the whole hospital route, I was going to UT Southwestern where I had my stem cell transplant last November. I called the transplant team, spoke with the nurse, she said they would notify the ER and would be waiting for me.
The ER at UT Southwestern, when they hear that I am a “BMT” patient (bone marrow transplant), is super efficient. The transplant team from the front door of the ER to the discharge 24 hours later, are amazing. They whisked me in from the front desk of the ER directly into a room without delay. They put a BMT patient as a priority so that they will not be exposed to germs in the general waiting area. Once back in a room, they continue to move with purpose. The goal at that moment is to move me into the room on the BMT floor and get me out of the ER.
The hospital where I received my transplant, St Pauls, is now shuttered. They are in the process of demolishing the interior for the purpose of implosion. The new hospital, UT Southwestern Clements, is amazing. The technology built into the room is over the top wonderful. The TV is a full computer TV hybrid, complete with email, internet, movies, Skype, really almost everything you could want on demand. It had my name in it and was showing me videos and things that pertained to my stay, fully customized to me. A technology ambassador visited my room, showing me the ropes and ensuring I could use all the new geeky toys to their fullest. The huge plate glass windows that are one full side of the room from the 11th floor have these automatic shades that glide up and down effortlessly to provide privacy or darken the room. I can control the lights from my bed. The bathroom is nice enough I could almost emulate it at home and be proud of it. The whole set up is top notch.
Their food is excellent, I must admit. Only hospital I’ve been in (and I’ve been in a bunch) that has a gourmet restaurant concept. Call anytime I want to eat between 7am and 7pm. They don’t bring food unless I call for it. Ordering from the expansive menu, and they cook it fresh and then deliver it individually. Allow one hour, please. The options are quite good and the quality is about as good as one could possibly hope for.
They determined quickly that I did NOT have pneumonia. You ready for that? After having two doctors diagnose me with pneumonia and operating under that premise for almost two weeks, it was a surprise. I suppose that is what happens when the secretions are actually tested. They took samples from deep from within the nose, blood samples, and sputum samples. I mean, if there was an opening, they dug around for a bit. If there is a bodily fluid, they sampled it.
So if it wasn’t pneumonia, then what was it? Rhinovirus and enterovirus.
Yes ladies and gentlemen, the common cold was my source of misery. I tell you what, I did not know that a cold could reduce a man to such a weak state. I have new respect for how bad a cold can be. Of course, my immune system is shot and I was already weakened a bit, so that factors in. The common cold, how about them apples! Hey, if you’re going to do something, do it right. Don’t go halfway. Get a serious cold that puts you in the hospital and changes the course of your life (as you will see in a moment).
I was discharged within 24 hours, told to do “supportive” things like rest, nutrition, liquids, and the like. I was given a couple of new meds to help clear the lungs which continue to pool liquids. I made the drive home, exhausted but gratified that the whole issue has been addressed in a somewhat definitive manner. I was told to plan on at least two more weeks of symptoms, with a gradual return to baseline. 1-2 weeks off, I suppose that is o.k., but seemed a bit long.
Back home, reality pulled a sucker punch and knocked me low. My physician is wanting me to take off about 1 month to rest and recover. One month!!!!!!
Insert deep sigh of resignation mixed with a smoldering anger.
I have a hard decision to make. This reality of being off for one month, the whole illness combined with other factors, was pressing in on an issue I didn’t want to face. This has sort of been looming over me since I returned to work, but I was determined to not have to address this particular issue. I suppose we don’t get to always pick and choose our battles, do we?
My youngest daughters dog, no reason to include this other than to make you smile
It is with a lot of emotion and an undesired sense of anxiety, I share that I will be working part time when I return to work. This has been a difficult decision for me, very difficult actually. Hits me hard on so many levels. Even though it is not intended to be a permanent change in work status, it is a powerful symbolic one for me. Just as losing my hair when chemo started was ‘one of those key symbolic moments,’ this rates right up there to me.
My change in status to part time is an admission I cannot go on with my life as I once knew it any longer. It is an introduction of new unknowns. My body has failed me yet again. It is declaration I am not capable of working in the only way I have known up until now. In a sense, I am facing a reality that as a man, I can’t provide for my family in the same capacity as I could up until now. Deep down inside this man, and I suspect most men, is this primal desire to provide for, care for, and protect my family. I feel that is now slipping from my fingers, with this moment in time being a bigger leap towards a goal I don’t desire to reach.
And there isn’t a thing I can do about it.
I am now embracing a new status in life, one that says I am only partly capable. I find it easy to say outwardly “ok, I’ll work part time, if that is what I need to do.” Yet I find this a bitter pill to swallow internally. Where I once saw all this fighting cancer as a big pause from life, with the trust I will “get back to normal,” I can no longer escape from a terrible reality. This reality is one many Burkitt’s patients are forced to deal with: I can’t go on as I was before. Somehow, when I read what I just typed, it seems so minor and almost whiny. I assure you, it has driven a few of us nearly mad in our attempts to essentially mitigate the continuing aftermath of cancer and chemotherapy.
The implications of being weak enough to only be able to work part time are dynamic and sweeping. I now have to figure out bills with a new kind of budget. I have to ask questions such as: “if this persists long term and I cannot return eventually to full time status, is it wise to try to stay in our home?” “how will this affect our medical, dental, and vision insurance if Janice should lose her medical coverage for any reason?” “Will I ever be able to return to full time status?” “What am I going to do with my extra time?” “When will I quit slipping downward medically and stabilize into my new normal?” “What is the next unforeseen problem just around the corner to challenge my health and sanity?” “When will this lack of control over my life end, if ever?” “Will my life ever be my own again to go where I want when I want, or will I forever be limited by the boundaries that increasingly appear on all sides with increasing frequency?”
My oldest daughter’s dog, Millie. No reason to include this except I put a picture of a poodle noodle earlier. And she’s cute.
I’m going to share in detail some day about this whole unfortunate reality called a “new normal.” We have discussed it on the Burkitt’s group many times. Giving up vitality, energy, ability, and a certain amount of dreams is hard to do. Letting go of who I was is hard to do. It may sound sterile, but I assure you the working out of it is difficult.
It is now Monday, November 2nd, and the unstable foundation that is my health hasn’t stopped shifting. I got really sick yesterday, really sick. I woke at 4pm due to a pain in my abdomen. It was a pain I know too well. It is a shot across the bow that my ship is sunk for a few intense hours. The nausea and vomiting hit right on schedule. Intense vomiting, picture the exorcist. I call it my “GI seizures.” This started Valentines day 2015 and hasn’t stopped yet, although it has lessened in length a bit.
Compared with the previous two bucket gator calling sessions, this one wasn’t too bad. Why two buckets, you might ask? One to sit on and one to put my head in. I tell you what, I called alligators from the salt flats of Matagorda, Texas to the sewers of New York City. Ugh! However, this time and the previous episode, there was no diarrhea. Thankful for such small victories, I assure you. Maybe I should actually call it a “one bucket gator calling session” then.
I got Zofran in my system and things began to change. The vomiting slowed down and finally stopped. The nausea abated. Feeling super weak, I laid down in bed, holding on to the big blue bucket. Over the next few minutes, the room got colder and colder, until I was chilling to the bone. Janice was kind enough to bring me some extra blankets. Not much time passed and I could tell I had a fever. The thermometer indicated 101 degrees.
101 degrees. I wonder what that means to you? I know what it means to me. Cancer patients monitor their temperatures like a parent guards their child. Those little numbers hold a lot of meaning to us. The one hundred and one degree reading was enough to cause my eyes to well up and for me to get slightly emotional.
At the ER for the second time in one week
We are not allowed to spike temperatures without medical intervention. So here I go again, another visit to the hospital only 5 days after discharge, needles everywhere in my body, a million questions asked, my dignity reduced by another exposing of my weakened humanity, and reinforcement that my life continues to not be my own. I am so tired of being sick and tired, of hospitals, and all the painful stimuli and violation of my body; I wanted to crumble under the weight of this all too familiar pressure. I probably sound like I’m whining, perhaps I am, but you know what? I don’t give a rats ass. I’m tired of all this to be honest. I stay emotionally “up” most of the time, and have some down moments here and there. This is a down moment, a l-o-n-g seemingly unending down moment.
When I hit the ER this time, my temperature was 101.4 degrees. I spent 4 days in the hospital. They dug yet again in every opening, sampled every fluid, and put me on breathing treatments around the clock. When the nurse sampled my right nostril for the second time in 48 hours, she dug so deep and hard I had blood run out of my nose. I don’t have nose bleeds and was impressed at how much blood can come out of the nose. It was very painful and ticked me off. The final conclusion with discharge was that the cold had resolved itself, they couldn’t find anything wrong on my abdomen with the CT, x-rays of my body looked good, all cultures are negative, the EGD (scope of the throat and stomach) was normal, and basically, they weren’t sure why I spiked a fever. Home I went.
I’m now going to go as of Tuesday, November 10th, and begin receiving my childhood immunizations all over again. The stem cell transplant wiped clean the “memory” of my white blood cells. Whatever I had stored in my body for defenses, is now gone. I have to familiarize my body with common enemies all over again. I’m looking forward to that, I assure you.
The common cold. Who would have guessed a tiny virus would produce so much change and problems in my life?
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