100 Days, 100 Nights

Reposting from my Caring Bridge post of yesterday:

I posted the song by that title (above) on my Facebook page this morning, but I don’t think anyone “got” it. ūüôā

We made the trip to San Antonio today for my 100 day follow up appointment. I had them take blood from my port because it hasn’t been accessed in a month and needed to be flushed. That’s something I’ll have to schedule monthly as long as I have it.

My blood work was great!

I saw Dr. B’s Nurse Practitioner and she said she hopes they never see me again. ūüôā

Sharona was replaced by Natalie, who carried on, always ready with a hand wipe.

Sharona was replaced by Natalie, who carried on, always ready with a hand wipe.

I am pretty much free to do whatever I please now. I still need to be careful, though, as I have less immunity than the normal person and it can be harder to shake an infection once I get it. Wash, wash, wash my hands – preferably with good old soap and water. My friend, Rebecca, says I need a Sharona. (Only Monk fans will understand.) I’m accepting applications.

If I get sick and don’t start to feel better after 48 hours I am to see my doctor, not just shoulder on as I would have done before.

My skin has been damaged as well and, combined with a weakened immune system, I also have to be especially careful about skin cancer. She recommended that I see a dermatologist soon and always use sunscreen, wear long sleeves, wide brim hats, etc. I’ve never been very good at daily sunscreen,¬†so I have a new habit to develop. And it’s time to go to the dentist.

Vaccinations begin at 6 months – sometime in August, I guess. I forget what is first. Then more at 1 year (DPT and some others). Then those that contain live viruses (MMR) at 2 years post transplant.

Do I look like a person who doesn't like pills?

Do I look like a person who doesn’t like pills?

When I asked about my peripheral neuropathy, she said that she could tell by looking at me that I’m not the kind of person who likes to take pills. How could she see that? I wasn’t wearing a sign or anything… She said some patients have had good luck with¬†vitamin B6. Others have tried¬†Wellness Formula – one patient especially had good success with it. She didn’t observe by looking at me¬†that I often consider herbal supplements as another form of “pill.” I’ll check it out, but may see if yoga and massage do the trick without any pills.

We were both a bit confused that Dr. T didn’t order a PET scan for me as it was in my discharge orders and I specifically asked about it a couple of times – and that the CT scan I did have was only of my abdomen.¬†Maybe he’ll replace the next scheduled CT scan with the PET.

When I started writing this, I tried to google the link between stem cell transplants and skin cancer. I didn’t find a lot, but I did find that, in general, I am now at some increased risk of several cancers. Good to know so I can be aware of the possibilities, but best not to dwell….

Although I wasn’t nervous about this appointment, I was really tired afterward – the kind of tired you feel after you have been through something stressful. I think it was being back in San Antonio, having my port accessed, smelling the heparin to flush it out as it was over and over again in the hospital, the focus on what has transpired …

I am happy to be doing so well, but I am so sad right now¬†about friends facing their own rare diseases and young adults losing their lives in car crashes and young people with cancer. On the drive home I was visited by a memory¬†of myself when I was in 3rd grade and struggling with the realization that life can be unfair. There was a girl in my class whom I thought had a hard life. She didn’t seem any different than me. We were¬†just a couple of good kids who liked to play and did our best in school and¬†maybe thought our teacher was too strict¬†– why should her life be more difficult than mine? The conclusion my 3rd grade self reached was that if your life is easy – going smoothly, it is so that you are available¬†help others who are having a hard time. I decided that is God’s plan.¬†I think it’s time to get back in touch with my younger self and recognize my privileged position¬†of being restored to health. (Well almost!)

And on a lighter note – I have half-length eyelashes…. long enough that if I put mascara on, they almost look full grown. And my hair looks like it’s coming in darker – except for the white hairs (!). Christina thinks it looks kind of gray. We decided “ash” brown or something sounded better. It’s not really long enough yet to tell what color it is against my pale scalp, so we’ll wait and see.

I guess that’s it for today…. although my still-addled mind thinks I am forgetting something.

2 thoughts on “100 Days, 100 Nights

  1. Check out the clothing at sunprecautions.com. My husband was very prone to skin cancer and wore their products for years. Expensive, but worth every penny.

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