I have been trying not to write this blog because it means I have relapsed, my cancer has come back, and I am undergoing treatment again. Although I wish it were not, all of those things are true.
A few months ago I started getting these headaches that would start when I turned my head and neck and it immediately radiated to this funny, fuzzy feeling in my head. It felt like extreme tension headaches and my muscles around the neck were really sore, so I just said that was the culprit. I had just started some work out classes again and playing softball so I just chalked it up to increased muscle work in the back of the head area. I mean, I hadn’t done sit-ups or sprinted to first base in a few years, so I’m guessing something had to hurt… right? The pain subsided for a month or so, but I knew something was wrong when I started getting some pretty debilitating headaches about a month ago. However, I am really stubborn (maybe the understatement of the century) and I didn’t really want to make it come true so I lived through the pain.
It got so bad, however, that I would turn my neck and these horrible seizures would invade my head for minutes at a time. I couldn’t dry my hair for work, I couldn’t walk up stairs, and I sometimes had to turn away from students because my head was seizing up or I couldn’t hear them. I eventually couldn’t even go to work because I was in debilitating pain just from laying my head down on the pillow at night. I slept a lot, thinking I was just tired. I wasn’t enjoying any of my social engagements either, because they were just a lot of effort and I felt really, really exhausted. My doctor had given my some muscle relaxers to see if that was the trouble, but they weren’t working. Eventually Jon took me to the emergency room because I was crying out in pain from the bedroom; he even had to put his hands behind my neck in the morning to lift me out of the bed. But I kept with the pain because I didn’t want to stop my regular life for cancer treatment again.
The ER neurologist scheduled an MRI to see what was causing the pain in my head. The insurance claimed to take five days before they could get the payment pre-approved and I didn’t want to spend 2,000 dollars out of pocket, so it was scheduled for a week in advance. I didn’t know if I could make it. Luckily they called me on a Sunday night and told me they had an opening early the next morning. At 7 AM. I dutifully rose, put on an outfit to wear at school after the exam and threw up bile for about fifteen minutes before the exam took place. I was pretty nervous and, unfortunately, it took a really long time. Two hours in that noisy metal tube without being able to move my head. And my brain was swelling. That was painful. I’m pretty sure that if a country is looing for a new method of torture on humans they should put them in an MRI tube for two hours. But somehow Jon and I made it through. I was extremely dizzy afterwards and threw up again, but yet somehow I managed to go about my normal daily tasks. Did I mention before how stubborn I am? The next day I had an appointment with Dr. Majlis. He did not know that I had gone to the ER the week before and also had done an MRI because the pain had gotten so bad.
Jon took me to the appointment. Now I don’t know what it feels like to walk to your own death sentence, but I would say that long, slow trudge to the doctor’s office to have my MRI results read felt a lot like I was going to die. I couldn’t move my feet, I thought I might fall over or faint, there was a weird buzzing in my head, and I was just so dizzy. Jon had to stop a thousand times to offer me a wheelchair, but I wouldn’t take it. Eventually we made it to the waiting room for Dr. Majlis and promptly fell asleep on each other’s shoulders. It was the most peaceful sleep I think either of us have had in a really long time. It was the calm before the storm, I guess you might say, and we both remarked on it. Eventually my name was called and Jon and I went into the office. I immediately told Dr. Majlis about my MRI and he went to the computer to look up the results. I sat with my arms crossed and Jon sat across from me, but the look on Dr. Majlis’s face was not good.
“Here it comes,” I thought. “Our lives are about to change forever.” I braced myself for the truth to come washing over me. And it did.
“You have multiple lesions in your brain,” he remarked as he read the results.
“Do I need to go see my family?” I asked. “How long do I have?”
“If left untreated you only have a few months,” he said.
“Well, hmm,” I think I managed to respond. My teeth were chattering and I felt like a chicken with my head cut off. “I’m doing to die,” was all I could think about and probably said a few times. I was ushered over to the outpatient oncology section to get me some drugs to ease the pain in my head and also some really fantastic happy pills that I think were meant to calm me down. I think they should have also given some to my husband because they were really fantastic. Immediately the tears began washing over Jon’s face and I was in such a good mood that I didn’t really understand why he was so upset. “Get that man some pills,” I thought. I couldn’t cry because I think I was in shock. We began our phone calls to family members and I think the pills were really doing the trick because I couldn’t understand why everyone else was sobbing and carrying on so. I received my drugs for a few hours, which luckily provided immediate relief for the headaches and I was no longer in pain. We headed home and I checked into the hospital the next day for more tests about what the treatment would be.
I had a pet scan scheduled for the afternoon to see if the cancer had come back anywhere else in the body and also appointments with several neurologists and the radiologist to see what we were dealing with. You see, Dr. Majlis had not known about the MRI and was reading it for the first time. His face showed that the results were not good, but I’m not sure he had all the information he wanted in order to deliver his verdict. But luckily we did receive some good news in the hospital. My pet scan came back clean which means that cancer is not present in any other part of the body, so I have that to be thankful for. I do not have to worry about chemotherapy right now because the medicine I take every three weeks seems to be stopping the spreading of cancer to the other organs.
After several appointments with neurologists in which they gave me a lot of tests where I had to touch fingers and feel toes going up or down, and walk a drunk line, etc, etc, I felt pretty confident that the cancer was treatable. I passed all the tests with flying colors, even a brain EKG that was so strange I felt like a monster. They put all these electrodes on my head and in my hair and then showed me a photo light show for a minute that was so bright that I think I almost passed out. I’m not sure what the point of it was, but I do not have seizures, thank god. Indeed, the neurologists confirmed that the lesions were in my cerebellum, a level below the main brain mass, so they are not interfering with cognitive functions. The treatment right now is brain radiation for ten sessions in the hopes of shrinking the lesions and maybe even eradicating them. It seems a bit much to hope for. But there’s not much I can do, except to finish this treatment so I’ll let you know how it goes. I’ll write another blog about the brain radiation itself, because it’s very uplifting and I’m sure you want to know all about what that entails….Good times! But I need to take my pills and eat some breakfast and get myself into a state of relaxation before my treatment, so I’m going to leave you here.
I haven’t done a whole lot this week besides lie around the house and nap this week, but I wanted to leave you with some things about life that will always be true, no matter what: your dogs will always need feeding in the morning, even if you don’t feel up to it. Their fur will feel like a soft, comforting blanket, and petting it on the couch will make you feel a ton better. Clothes left on the floor will always be slippery and you will fall (with style and grace of course…). Hot water from the shower dripping on your body will always feel good: so good that you don’t want to get out of the shower and people will come to check on you. Facebook friends will continue to post stupid shit on social media (Note to self: cancer patients: do NOT go on facebook…) Parking spots at Clinica Alemana are too damn small for the massive trucks and SUVs that are trying to park there. The people in your life that you love will always be there for you, even when you are at your absolute lowest. They will take care of you when you need it. So… I guess the long and short of it is, thank you to all those who’ve responded to my emails and taken the time out to call, email, or text. It’s hard to know what to say at a time like this and I know I’m not in your life on a daily basis, but your love and support means the world to me.
I don’t know if I can win this battle again. I try not to think about the future and what that means for me because we just don’t know. But please know that I am still here and I am hanging on and I am going to fight to keep my life because that’s what it’s all about. It’s about family and love and happy times and good memories and I vow to keep that going as long as I can. I hope I can spend the rest of my life doing meaningful work that celebrates life and all that it entails. I really hope that all of you can do that too (even if I have to read about it on facebook…)
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You have suffered so much in the past that this was difficult to read without feeling mad at the injustice of your current situation. Know that you and your family have many people who care about you. Your strength and determination are inspiring.
Eli, thank you for writing your blog. It is scary to think about what you, Jon, and your family is going through. I send you hope and promise to keep you surrounded in healing light. I think of times in China when your laugh, amazing cooking ability and love for Jon made me smile. That is how I think of you now. And you are right about Facebook. But I am thankful that it let me know.
Dear sweet girl;
I am so grateful for your blog, as we are one of those old friends that are not in constant contact and don’t feel we should intrude on you and make you explain all this for the billionth time. Jen has kept us posted and you are in our prayers. You have beaten the odds before–and you can do it again. I am praying and visualizing that the radiation is kicking the shit out of the lesions. I am so sorry for your pain, sweet girl.
And of course I know you are not a girl anymore—-but to me you will always be the girl with us in the haunted forest. Afraid, yes, but going in and hanging on for dear life. Just hang on tight until you get out, Eli.
We love you,
Julie and Mark K
I recently recounted this same story to my sixth graders. We were playing apples to apples and the green card said “frightened”. I happened to have Haunted House in my hand so I played it. I definitely told them the story of the haunted forest and my face planted in Mikey’s back.
Eli, you continue to inspire and to radiate strength, courage and grace…thank you for you example of living the best life one can live. Keep up the fight and know that I send love and energy every day, as do the rest of your cadre of supporters. You ROCK, woman.
I think of you dear Eli, every day sending love, light and positive thoughts your way. I’m a little far away but here for you if there is something I could do to help. The biggest hugs for you and Jon.
Hi Eli, In the beginning I could barely read this – I felt sick imagining what you and Jon went through these last weeks and also sick with worry. But as I read on, I began to feel real hope for you. You are the strongest person I know, and if anyone can beat it, you can. We’ll be thinking of you and sending positive thoughts your way, every day. Lots of hugs and love to you and Jon. xx
Love you Eli, thinking of you and your giant and all the great times (with great wine) we have spent together.
Thanks for sharing pieces of your life on your blog. You inspire and give strength to others with your words. I hope and pray that this battle you face now is just a “hill” to climb and that the prognosis will be good.
I sincerely hope that I am not a facebook friend who has posted anything dumb. At the end of the day, facebook keeps people in contact, but face to face is really the best!
I am happy that you have had energy to surround yourself with your closest friends. You are wise to store your energy for yourself and your family!
You and Jon have been so generous to invite Rick and me to very fun events, and you have opened your home to us so many times. I have excellent memories of the dinner you cooked to benefit the NHS event, so I sent wine glasses home with Jon, as I had mentioned that I would send them on to you guys that night. I am optimistic that the treatment will work well and that you will continue to celebrate wine and life, cooking and catering for those you love.
“Hit me with your best shot!” rings in my head and my thoughts and prayers are with you and Jon today.
My vision is of you sprinting across the soccer field, jersey billowing out behind. I think Eliswift makes me think of that.
I’m sorry you have to fight. I’m thankful for your strength of spirit & purpose. You are an inspiration, Eli & from far away in California, I am fighting with you. My prayers, good vibes, and visions of Eli swift are with you.