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. 🙂

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. 🙂

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?

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.

I wrote something on my Caring Bridge page yesterday and, since some of you keep up with what’s going on with me, I decided I’d go ahead and share it here too. It takes me just as long to write here or there, so why not double dip, right?

The Transition to Recovery

I drove myself to my appointment today for the first time since this whole thing started. First it was swelling and extreme fatigue that prevented it, then it was chemo brain and fatigue. But a new day has dawned. 

It was boring sitting in the waiting room without a friend! But when I got back from labs I sat in a different spot and the woman next to me just started in talking and joking with me and “adopted” me into her family (she was there with her sister and mother) and so the rest of the time passed quickly and well.

I saw Dr. T today. Everything is good. Labs good. Vitals good. I had a CT scan last week and it was “perfect.” My liver functions are still off, but have been making slow but steady improvements. He doesn’t want to see me much any more – scheduled me tentatively for three months out with the NP (after another CT scan unless the transplant doc wants a PET scan next month) and with him 6 months out – if that’s ok with the transplant doc. I see the transplant doc May 27th – 100 days post transplant.

I’ve been running things around in my head for about 3 weeks now rather than writing something here. I’m going to try to put these thoughts into words – you know it is healing for me to think things through and write them out – and I also always hope that my experience shared honestly will be helpful or informative in some way….. That’s the hope anyway.

You may recall that I was having trouble eating and having lots of digestive issues. It made me grumpy. I like to eat. I was losing more weight. It made me feel “not strong.” I couldn’t walk very far outside for fear of not getting back to my house in a hurry. I just didn’t feel good and I wanted to feel good. 

Lola being good

Lola ran outside one day when I answered the door. I went next door to get her and bent down to pick her up. And I just tipped over – onto my knee – and scraped it. It made me mad and made me cry. Because I want to not tip over. Because I want to be able to get myself up off the floor. Because I want to squat down to look at yarn on the bottom shelf at Michaels and not remember too late that I can’t get up from there by myself.

It was weird because I also felt an expectation that I was supposed to be ok now, so I shouldn’t complain. I’d been taken off of prayer lists because I’m fine. But I didn’t feel fine. Was I just being a whiner? Did I think I should still be the poster child for the sick? 

Non-dairy yogurt for tummy

I tried to solve my tummy issues. No dairy – helped initially, but didn’t solve the problem. Started eating non-dairy yogurt with live cultures – improved, but still a rumbling, gassy, cramping tummy. I cut my consumption of that quart of Gatorade a day that Dr. T suggested to half that amount – much better! The trifecta of tummy health! I’m still avoiding dairy and consuming probiotics and I’m feeling much better.

I also felt a heaviness in the house. I don’t know how else to describe it. My home, where I felt comforted and supported all through my illness and treatment, now felt like a “sick house.” I was free of disease. I had completed treatment. Yet I wasn’t really well – or at least didn’t feel “done”. What, then, is this time? Oh, yeah. Recovery. I’m recovering. But my house still had sick vibes. What to do?

The first thing I did wasn’t a change to the house – it was to change my profile pictures on Facebook. I took down the “Strong Enough” banner and picture of me in a headscarf and replaced them with Easter themes. The next day I took all of my sick clothes (especially those worn in the hospital) out of the closet and put them away where I couldn’t see them. The following day I took the quilt off the couch where I sit/lie to rest. It has covered the seat cushions for a year now and the doggies and I have spent many many many hours there together. We still spend time there, but it is not covered in a way that says “place of rest for the ill.” Each little thing began to lighten the air.

I realized too, that I needed a change in how I think. I have been living for a year as a sick person. Now it is time to get out of the habit of living sick. Shower and get dressed in real clothes every day and try to do it first thing in the morning. Remember that you are better now – you can do more stuff. Do the laundry – remember you used to do laundry every Monday? 

I still have trouble planning and following through on things and I am easily distracted (still a bit of chemo brain at work), so I started making a very short list for each day. Sometimes I forget to look at it. But the point is that I adopted a lifestyle that got me through the past year, and it’s not as easy to just “get back to my normal life” as I thought it would be. I have to actually think about it and work at it. 

Kathy and Mary Faye on Easter Sunday

About two weeks ago – about the time my tummy got better – the fog in my brain also began to lift and I started to just generally feel better. So I felt like I could keep a promise and sit with my friend Mary Faye – who has had her own long recovery – in church on Easter. She said she wanted to WALK into church on Easter and sit with me. And we did! And a few days later I got in my car and drove around the neighborhood and then to Sonic for a lemon slush. It made me tired, but I did ok. So the next day I drove to the ATM and Starbucks and the next day I did a practice run to the doctor’s office so I would be ready to take myself today. 

I started walking 2 or 3 times a day for about 13 minutes (that’s how long it took me to get around our oversized block). Then a few days ago, I walked for 25 minutes on the treadmill. Not very fast, but long.

Bluebonnets at Muleshoe Recreation Area

And I spent a wonderful afternoon last week with my friend Gayle, who took me to the most amazing spot for bluebonnets. I have never seen so many or been surrounded by so many that their fragrance filled the air. (Before I got down in the flowers for the picture, I told Gayle she would have to help me up.)

I kept looking at my Altar of Encouragement. Was it time for it to go? I thought about it for days. And finally I decided, yes – it is time for a change there as well. 

Altar of Encouragement

I spent three days dismantling the Altar. It took that long because I took one of the journals I received as a gift and wrote down every item on the table and who gave it to me. And I read every card and letter and sorted them by person and wrote down the names of everyone who sent a card. And then I went through all of the daily gifts from my church family and did the same. Boy, was I glad that friends had asked me to post pictures of each day’s gifts to Facebook. I had tried to keep the cards with the gifts so I would know who gave them to me, but when I changed rooms at the hospital, people just bagged stuff up and things were separated. So I looked back at all those pictures and I could match up cards to pictures and write them down too. And then I wrote a list of people who had given me rides to the doctor – or brought a meal – or some other kindness that wasn’t a thing with a place on the Altar. And it gave me so much pleasure to do that and to re-experience each kindness and encouragement and, as you have surely guessed, I had some teary moments. I have one more list to add to the journal – the stories I received for my new birthday. I can’t wait to reread each and every one! (If you had every intention of sending a story but didn’t, I’d still love to get them! I can celebrate each 12th of the month as a mini birthday, can’t I?) **

I’m not sure yet what I will do with these things. Some will be absorbed into regular use – books on a bookshelf, scarves and hats in my closet, lotions and other nice things in the bathroom with toiletries and makeup, …. 

Will I make a mini version of the Altar with some of the items? I don’t know yet. I’m still “trying on” what Recovery looks and feels like and what will support my Recovery.

I knew that it would take time to feel “normal” again after my transplant – several months, I had been told. This part of my experience is teaching me that one doesn’t go from being sick to being well overnight – especially if the illness lasted over a long period of time or involved invasive or death-defying treatment. It is a physical transition, but it is also an emotional, mental and spiritual transition. And it is a time still fraught with change and sometimes worry because some treatments leave you with long-term side effects and every time you feel weird or need another scan, anxiety can rear its ugly head. 

Patience and acceptance, yet again, are required.

(If I waited to post this until tomorrow, I’m sure I’d make some changes – but here it goes – from my head and fingers to your eyes.)
***
P.S.
Hugs and handshakes – I’ve been back to church twice now, but I’m trying not to shake hands or give and receive hugs in crowds. I just don’t want to get sick and set back my recovery any more. Plus – I won’t be getting my immunizations until 6-12 months post transplant, so I’m more vulnerable to those measles outbreaks and the like going around. So – don’t be hurt if you don’t get a hug. Sometimes I forget because I like hugs and want to get them and give them – and then I remember. Uh oh.

Plants – I almost forgot! Some of you sweet friends have been caring for my plants. You may bring them at your leisure. I’m still not allowed to garden or touch the dirt in plants, but I could water them. I’m in no hurry. Keep them longer or bring them back as soon as tomorrow if you want them out of your house. Oh wait! How quickly I forget. I can drive to your house and pick them up. Duh. Call me.

**   When you receive a stem cell/bone marrow transplant, the medical team tells you it is your new birthday – because everything is essentially wiped out and your body has to restart from zero in many ways. You have 0 white blood cells until the transplanted cells engraft; you lose immunities that you carried, etc. Plus it is a life-giving, life-saving procedure. In anticipation of my “new” birthday and the rough days that would follow, I asked my family and friends to send me stories from their life or from their family for my new birthday. I was fortunate to receive them and had planned to write a post about it at some point. Haven’t thought it through yet, but maybe I still will.