#but im not complaining ill take it give it to me injecting it in my bloodstream

[skitskatdacat63]

2005 Belgian Grand Prix - Giancarlo Fisichella DNF

[dizzyspellsxo]

Today...

I’m just kinda upset. I have my appointment with the neurologist I’m supposed to switch over to in October. I am still with the same MS team I have complained about before, and sometimes leave appointments a bit annoyed. Like when the nurse said I was “too young” for SSDI, despite the fact that I have M.S., a disease that doesn’t give a crap about me being “too young.”

I spoke with the same social worker that suggested I apply for ssdi, when I explained how debilitating my fatigue is, and she’s more understanding than the doctors that treat MS patients. Actually, I’ve had the Opthamologist that injects my Botox (for my facial and eyelid spasms and twitching) suggest I apply as well. I have been out of work since February. I originally quit because I was so tired most of the time and I wasn’t getting work done. I would literally hide work in my work cabinet. As soon as I quit, I had a relapse that made it impossible work, because of the new and/or worsening symptoms that came along with the relapse.

The only thing my neurologist seems interested in are my motor skills. Things she can see actually see. It doesn’t matter that I literally shake all of the time. She could see the slight tremors in my hands when held them out, she can’t see my insides that constantly feels like I’m jumping up and down, inside of my skin. My hands are better than they were, thankfully, but they still feel really tight at times. At least I’m able to actually hold a pen and write again.

I forgot to mention that my feet feel off, again. That is how my last relapse started, with my feet feeling like they’re “asleep.” I really hope it doesn’t get worse. I have an MRI scheduled for September. Hopefully there aren’t any new lesions. I’m just really tired of not being taken seriously. The social worker was nice though. She gave me some sort of test that she graded and determined I have “severe depression.” I mean... I was diagnosed with Dysthymia a few years ago, it isn’t surprising, especially with the crap I’ve had to deal with for most of this year.

One of the hardest things to deal with is the fatigue. I can’t get anything done most days. This appointment took me forever to actually go to because I kept rescheduling it. Then I’m stressing over how I’m going to support myself if I don’t find a job soon, because I haven’t applied for assistance. Even though I need and qualify for it. I’ve just been living off my savings which has been dwindling. I only have enough left until October.

I have been trying to find a part-time job, just to get me out of the apartment and earn enough to at least afford my groceries, bills, etc. If I’m forced to take on a full-time job, I’ll try to last for 3 months or so, enough to save up to quit for a couple of months. I don’t know what else to do. There should be more resources for people with chronic illnesses. I could have a relapse at anytime, and be in complete financial ruin. That is not okay. I could be alright for 6 months and end up having another relapse that takes another 6 months to heal from, and never be back to how I was originally.

It just sucks. It really does. Summer really makes me feel even worse, my fatigue, etc. I try to stay indoors, in my air conditioned room as much as I can. When I do have to leave the apartment, usually to pick up food, I feel overwhelmed by the heat. It is what it is. I’m (im)patiently waiting for fall. Summer is just the worst season for me.

[s-lamberthadduck]

Bear.Believe.Hope.Endure: II

“Dear Spencer and Marlene, I just want you to know that I will be praying for you. You can stay tough, Spencer, you keep fighting.  I know Jesus will see you through. He gives us perfect peace as we trust Him with all of our heart...I am fighting some of the same battles with leukemia, too.  So if you ever need a friend to write to, I will be here for you; especially to pray for you.”  

-Your friend in Jesus,

Jenny

I was almost exactly halfway through a 6 mile run, the rain pouring down and my eyes straining to see ahead, when my body started to give up and tell me it had been through enough. Breath became suddenly thick and hard to draw. My joints would strain and erupt in pain with every pounding step. I found myself lost in the overwhelming defeat of realizing that I would be adding 20 miles to this distance come June. I knew that I could finish but I would be settling for the bare minimum and starting down a path of compromise that felt all too familiar and, frankly, frightened me. Then, in a beautiful moment of miraculous clarity, I conjured one word that carried with it the power to dispel any doubt I had in  myself and in this whole process: endure. Love endures all things. I remembered the love that brought me to that exact moment of my life. Then, instead of focusing on the future, I called upon the past to remind me why I was running down this path in the cold and rain. I am loved. I love myself and I love the beautiful individuals in my life who need me to not give up when the going gets tough. Beyond the will to keep moving forward, endurance means so much more. Enduring requires a mindful acceptance of the inevitable trials and struggles to come because there is hope in the outcome of being refined. Endurance is not merely a process of hardening my senses and clenching my fists, letting nothing in or out. That will get me to the end but I won’t be changed, just battered and depleted. I think true endurance, driven by love, is opening my hands, exposing my heart, and feeling every single nerve in pain and using the struggle to motivate each step toward growth. It’s being in the moment and staying there when the lies are falling down like rain. It’s holding fast to the truth: I can do this, I will do this, I have to. I’ve spent too many years focusing on the future, worshiping ideals, then forsaking hope when things get hard. I’ve always viewed struggles as a sign of being on the wrong path instead of an assurance that the pathway to peace is laden with opportunities to practice it. Back to reality, I pushed myself to go faster on that day when I was tempted to slow my pace and shut down. 5 minutes later I broke through the wall and finished with a faster time than the week before. All that pain and doubt and fear was necessary to motivate me to achieve a higher level of discipline and physical ability.

And now here I am looking at box full of cards full of prayers full of love full of hope. How can I get through them all? Just one has brought me to my knees in an overwhelming emotion of indescribable intensity. All at once, I was indwelled with so many years of love and support I had never even contemplated before. And then I felt what I had always feared: crippling guilt. I knew this is why I had never opened the door. Just one person, just one card, was so full of selfless encouragement and I never knew.  All this time, there was so much power resting in these words unread.   I feel it now and I am thankful but it’s so hard not to hate myself for never looking back, for never looking out beyond myself at all the people reaching out. If I had, maybe I wouldn’t have spent so many years wondering if my life meant something. It obviously did to so many people and I’m willing to see that it probably does still now. I can also see that freaking out about getting to the end of this journey, just as I did about reaching the end of that 6 mile run, will only cheapen the value in this process of working through pain. I thought I was going to be able to cover months and months of treatment in this chapter and all of my feelings about it. Instead, I’ve really only processed about 4 days. So buckle up.

Hitting the ground-that’s all I remember. There’s nothing quite as memorable as getting the wind knocked out of you by the solid, immoveable ground after losing grip on the monkey bars. Well, that and the pain the next day. I also remember walking down the hallway in my underwear, my feet on the cold wood floor, out into the dining room where I found my father pouring over something at the table. It was either the Bible or the morning paper, as he has always read both in the morning for as long as I can remember. I complained to him about the pain and I’ll never forget the way he looked at me. He seemed burdened. I was 4, it was early, but I can still feel the presence of a great weight in the air and I’m sure there’s a reason it’s the last thing I remember for months after that.

November 12, 1992. There were a number of reasons my parents took me to the doctor that day, the primary one being chronic stomach pain. In and of itself, this isn’t usually alarming enough to run lab work on a patient’s blood but when combined with whatever else my parents told the doctor that day, it seemed prudent to look for certain underlying issues. This is the first of many instances of curious happenstance: This particular doctor, on this particular day, decided to look past the obvious and read between the lines. Not all doctors do this on all days. That evening, my parents received what they refer to as “the call”. As I look back upon the few details of this day that I know, I can only imagine taking my daughter, who is now the same age as I was during this time, to the doctor because something “just wasn’t right”. As a parent,  I’ve had that fear many times. I’ve been overcome by the potential malignant collusion of symptoms into something much more insidious than exhaustion and growing pains. As a cancer survivor there’s a spark of fear in every physical ailment those you love experience, especially your children. And I think I’ve spent a great deal of my life in crippling fear of common ailments because cancer ruined the bliss of ignorance. I know it always could be right there. It most likely isn’t, but cancer also ruins the innocence of chance.

November 13, 1992.   The second curious happenstance of note is that my parents were able to find AND get an appointment with a pediatric oncologist in Portland within 24 hours of contact. I’ve gathered that was quite unheard of at the time.  From what I understand this doctor, my doctor, took a special interest in me from the beginning and respected the urgency of my situation from day one. Doctors caring seems to be a common occurrence in this unfolding story and that significance is not lost on me. The purpose of seeing her was to confirm the suspicions of our family doctor based on the lab work he had run. The previous day my bloodwork indicated the presence of roughly 3500 blasts, or “bad” white blood cells. I’m still fuzzy on what’s normal but that level was well above alarming. One thing I recently realized is that the “Acute” part of Acute Lymphoblastic Lymphoma doesn’t just mean “bad”. I’ve always thought of “Acute” as intense or pervasive. “Acute” in my case meant rapid and aggressive. The day of this particular visit with the oncologist, my blast count had doubled to 7000. Apparently, this was on a friday and my doctor said to come in first thing monday to start treatment of Leukemia. The third curious happenstance was that my parents wouldn’t settle for that. They had all the reasons in the world to hesitate. My doctor had recommended what she saw as the most immediate and vital approach to the situation. Within 24 hours their worlds had been turned upside down and most people would take a moment, maybe even one day, to wrap their heads around the reality of sudden chronic illness. But, something in them won over all that chaos. Something prevailed over fear that day. My mother insisted that I be admitted as soon as possible, and I can only imagine the fervor which she made such a demand.

November 14,1992.  I can only imagine what it must have been like for my parents to have their 4 year old child admitted to the hospital for treatment of Leukemia only 48 hours after discovering its presence in my blood. I remember nothing of this time. I received a blood transfusion. They started doing X-Rays and EKGs of my chest. Im sure it was a whirlwind of confusing chaos and if it was anything like the trauma I’ve experienced in my own adult life, I’d be willing to bet the dominant sensation was numbness. My blast count had again doubled to 14000. I was rapidly entering the “Induction” phase of treatment and I was being prepped to receive chemo the next day. I was about to be thrust into a struggle I had no choice in entering and had no idea what it held in store.

November 15, 1992.  This is the day I started Chemotherapy. For the longest time, an embarrassing amount of time actually, I thought Chemotherapy was itself a drug. I thought Chemo was its own thing, just one thing, that killed all the bad things. 21 years later, I now know that Chemotherapy is an approach of using multiple drugs in combination to eradicate every single cancerous blast cell so that it can no further propagate and spread. This is why they resorted to injecting it into my spine and transplanting bone marrow.  I’ve also learned that Chemo, to this day, is a really blunt tool and is by no means precise. It’s shocking, actually, to learn that every day is a judgement call as to whether the drugs are doing more harm than good. I came across this amazing article from 1995 by Linda Ellerbee who had gone through breast cancer. Its title? “When all the choices are unpleasant”  In it she writes “It’s just so frustrating. Part of me is very angry we know so little about cancer that we must give people such large doses of what is basically poison in order to try to stop this disease. On one level (call it the logic level), it seems to make no sense. However, reality is this: Had I known about the possible heart damage from chemotherapy, I would still have chosen the chemo, and, knowing about the possible harmful effects of tamoxifen, I shall still take tamoxifen. At this time, the chemo and tamoxifen are the best chances I have for continuing to live. These are the choices people with cancer must make. Hard choices, Sometimes we choose wrong. In the end, we all agree: Treating a disease (cancer) by cutting you (surgery), poisoning you (chemotherapy) or burning you (radiation) seems, at best, horribly barbaric. Only good thing is, sometimes it works.”  Sometimes it works.  By now, you might be wondering why I was keeping track of my blast counts throughout the 4 days of diagnosis and the beginning of treatment. On the day I started Chemo, my counts were at 20000. I’m told children die at 40000. Had my parents waited until Monday to start treatment, it almost certainly would have been too late.

All my life, I’ve been drawn to ask “why?”. I feel like I’ve been given the drive to look for meaning when others don’t for a reason. That’s part of what I’m discovering during this process. To me, the substance that comes to the surface when I dig into the darkness of my past is the unrefined “why?”. Why did my doctor decide to run a blood test instead of blow it off or delay the pursuit of answers as I’ve heard countless stories of doctors doing? Why were my parents able to find a doctor so quick that cared so much? Why decide to insist on expediting treatment? Why was I spared from the brink of death just one day before my blood was irreversibly overcome with cancerous cells? Why did Jenny, my friend in Jesus, “lose” her battle with Leukemia and I “won”?  

I don’t have the answers and I’m not ready to find them yet. I do know that that I’ve already been changed in the process of asking and seeking. I do know that I will persist in running into darkness, through the rain, in pursuit of truth. Thank you for sticking with me in all of this. I know it’s messy, but the truth often is, or at least the process of finding it.