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Monthly Archives

July 2012

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.

Handy dandy mirror for self catheterization

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This mirror has been totally useful for me to self catherize. It makes it really easy to hit the spot. Yes, I know that is gross, but that is life folks…Ups and downs. You gotta go with the flow (in this case, literally). 😉

The price seems to have gone up from where I bought it for $46 to $85, so search around to find a better deal.

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.

How to Self Catheterize

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This is definitely not something that I ever imagined I would have to learn to do, but I guess it is a must at this point. In case you were wondering what self catheterization involves, I had included this handy video so you can see what I have to do through 4 lovely times a day. The worst part about this is that I have gotten pee on my jeans, all over toilets, my poor mom several times and even my iPhone. Sigh.

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!