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Personal Journey


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Me fighting!

Today was the second trip for chemo.  Once again, the trip was pretty easy.  The typical day goes something like this.

  • Arrive at appointment (mine at always scheduled for Mondays at 1:00pm)
  • Check in at front desk
  • Get vitals done (height, weight, blood pressure, etc.)
  • Wait for a bed or chair to open up, then your nurse of the day comes to get you
  • Get set up and they run through everything you are going to do for the day
  • Get IV put in
  • Sit for however long it takes for all the treatments

It is pretty amazing how many people are in there.  You can tell the seasoned veterans who are on regular chemo treatments nearly every day.  Everyone is really nice and caring.  The nurses are all very sweet and have conversations with everyone.  They remember every detail that you told them last time and genuinely care about their patients.  Very heartwarming.

You would think that going to the infusion center might be depressing.  Honestly,  for me, it is the opposite of that.  From my perspective, I see people who are fighting the battle for their lives and winning (at least from a positivity point of view).  It makes you realize that we as humans, despite all the bad in the world that we have created, are also amazing and resilient creatures.

Fight on!

My Desired Things

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by Max Ehrmann

Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its shams, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

Cytoxan treatment, not supposed to be that bad, and an update

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Doing a lot of research on my upcoming Cytoxan treament. Cytoxan is basically a drug that they use for chemotherapy. It is a long established drug and the side effects seem to be pretty mild. Since they are not treating me for cancer, rather lupus, I am not on a super high dose – only a medium sized one which should also help my side effects. From what I can gather from message boards and other things, people mainly experience nausea and tiredness the day off. The fatigue as treatment continues can get worse, but it is nothing like you imagine or see in the movies.

I am obviously feeling a bit of anxiety, but that is more to get it done and over with. I am having 3 treatments – probably starting this week with the first one – over the course of 3 months. Then the doctors will decide if they extend that.

Saw the Neurologist today. He was pleased with my recovery and we are all hoping that this Cytoxan will help a lot. I had to have a blood draw and then we are pushing up the MRI so that we can get a good baseline before starting the treatment. If the MRI shows normal, then we will do a lumbar puncture. Thankfully they do the lumbar puncture in the MS clinic at UCSF with a nurse that only does LPs so it should be fairly non-traumatic. Last time in the hospital I don’t even remember because they gave me ativan before because I was freaked out. I am still freaked out and will probably do the same thing. I have the same thing with the MRIs. Claustrophobia galore.

All in all I am doing very well. Started working slowly again last week. Very grateful to my supportive work folks for their understanding and happy to have something other than this stuff to occupy my brain for a change. I’m really excited about the project and really excited about the people that I am working with whom I have known for years and the new folks I will meet.

My mom is still here helping. Or getting annoyed with me. 🙂 Hopefully I am not too much strain on her and her business. She is great and the time we spend together is something we wouldn’t have had if this stuff hadn’t happened, so I am enjoying it and her company a lot.

Onward and upwards, folks. Life is good.

Health update

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No real updates to report from here. Getting better at walking every day. Had a few little setbacks, but other than that all is good. I’m actually bored now and wanting to start working. Going to start external physical therapy hopefully this week. Neurology appointment set in a week so we can figure out what course of action to take with the meds. Still trying to get a Urology appointment. I guess that is about it. My mom is still here. I think I will be good in a week or so to be home alone and start to resume life. My parents are thinking of moving into the building so that will be perfect having them around to help out. I might take the downstairs apartment with 2 bedrooms, so friends are welcome! They will take my apartment. Not sure how that will work out with the 3 cats and dog…

Anyways. Life is good and getting better by the day.

My routine

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I have gotten into a daily routine during recovery. This helps my body know what is going to happen when.

6:00 am Wake up

6:30 am Eat breakfast – usually Cream of Wheat

7:00 am Pee – Since I catheterize, I have to keep track of when I go

8:00 am Take medications 7:00-10:00 am Back to bed for nap / watch TV / whatever

11:00 am Physical therapy with Mom

12:00 pm Lunch 1:00 pm Back to bed for another nap

2-3:00 pm Shower and physical therapy

3-5 Lounge and physical therapy – try to nap but usually fail

3:00 Pee

6:00 pm Dinner

8:00 pmPee

9:00 pm Sleep

Health update

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Here’s the latest. Recovering well. Doing physical therapy every day. Moving house tomorrow so I think I will skip it. Got a call from Dr. Gross saying that there are a lot of doctors talking about me. They want me to go see the neurologist again. They are also thinking of switching me off the medication that I was about to start taking for something stronger. Their concern is that if the inflammation in my spine gets any worse it would “be a very bad thing” meaning I could end up in a wheelchair. They also mentioned doing another spinal tap and an MRI of my spine to see how the inflammation is. So we’ll wait and see what they decide to do on that. So, no major changes. I am really glad that they are following up and on the case. The doctors at UCSF have been great.

Off to take a nap now.

Transverse Myelitis

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A little video to show you what transverse myelitis is. This is what is causing me to have difficulty walking.

You can read more up on it here: http://en.wikipedia.org/wiki/Transverse_myelitis

I’d like to think that I am in the category of: About one-third of people affected with transverse myelitis experience good or full recovery from their symptoms: These patients regain the ability to walk normally, and experience minimal urinary or bowel issues.

We’ll see how it goes as I continue to push in physical therapy.

Health update – 3

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Went to the Urologist today. This involved 2 grown women and me in a bathroom trying to teach me to self catheterize. This is not only uncomfortable, but embarrassing. Using my iphone flashlight and mirror with someone yelling at you to hold your labia wide and open. And the catheter keeps slipping into the wrong hole. Very frustrating. I’m sorry for all the info, but it is reality. Who knew that a urethra would be so hard to find?

I gave up and went to lunch at Kevin’s Vietnamese and had a nice bun and coconut boba.

Then back for another try. This time we succeeded. Mostly thanks to the tampon I had to use to close off the vajayjay. TMI again.

Anyways, following that I had to head downstairs for a blood draw. And we were done.

I even managed to drive the car back to the house by myself! Win!