On helpful people, hurtful people & more strange happenings

Brown dog, red thumb

A while back, I graduated from occupational therapy, which was for my hands and wrists, but now I have gone to physical therapy, which is for my neck and shoulder. Because there always has to be something.

Although both are at Cooley Dickinson Rehabilitation Services in Northampton, they are two different departments. The PT for my neck is because of lingering restriction in motion and pain after the car accident, and the shoulder pain was there before but has become exasperated. I was chatting with the PT and told him a tree fell on my house, and he said he knew, because it was in the notes. He seemed to maybe think this was as curious as I did, because it didn’t affect my symptoms, although it did mess with my head. I guess Melissa put it in there for background, just so the PT would know he might be dealing with a doubly traumatized person. (Car accident and tree fall.)

A friend from the old days came over yesterday to help me get the books and the bookshelf out of my room. We had tea and ruggelach. It was nice to catch up. My room is almost emptied out, as is the part of the kitchen that needs repair (the whole area where the table is).

A few more strange things happened, and I am going to put these under the category of people behaving badly. Hopefully my run of it is finished, but as I know from experience, you never know what else will happen.

1. A guy who I hardly know blew up in my face when I said something he didn’t like. He spewed obscenities, getting in my personal space the same way that DT did with Hillary Clinton in that horrible debate. I said not to curse at me, and he cursed some more. I have a thin skin, literally and figuratively.  I wished I had reacted the way I know some of my friends would have done. They would have gotten back in his face. Or maybe calmly walked away. I instead burst into tears and THEN walked away. (Little PTSD going on here.) He shouted after me that I was a prima donna. Sorry if this sounds a little vague due to missing details, but I’m doing it this way for a reason.

2.  In a group email about skin cancer, I wrote that doctors have told me that my squamous cell skin cancers are annoyances that are very unlikely to be fatal.  That was annoyance with a capital A, as I wrote in this post about skin cancer as a chronic disease. Someone wrote that there’s no difference between "the deadly kind" and "the annoying kind on the skin." She said it because she had lost a relative after a misdiagnosis. So it seemed to me that she was invalidating what I said, or suggesting that my doctor had it wrong...and that because her relative's was deadly, mine had to be also. I hate to use such a trendy word as triggered, but, well, I was triggered. I wrote her back, saying so. People can say things behind email, text and Twitter in a way they would not to your face. We exchanged a couple more emails. The last one that I wrote, I didn't send, thinking I would regret it.

I added the photo of the dog because 1) It's a cute one of her eating one of her Christmas cookies, and 2) the red on my hand is from treating pre-cancers with a chemotherapy cream, Efudex.

3. The low tire pressure light went on in my Subaru. This was an annoyance in my old Subaru. It would go on for no reason. But just to be sure, I went to Steve Lewis Subaru. It is closer to me than Bertera Subaru. It was a Saturday. The guy at the desk said it was probably the cold but he said if I waited three hours someone could check it. Oh and also, it would be $14.99. I said, seriously? He said they had to pay the technician. My local service center, Veryl's, has done it before for free. But they weren't open. So I drove around not thinking much about it. On Monday I went to Bertera Subaru. They checked it for free. The tire pressure in the front passenger side was 16 pounds. It is supposed to be 32. The technician checked and found a nail in it. I went down the road to Town Fair Tire and got it patched. I happen to have bought my car at Bertera, but still, should that make a difference in a dealer having the courtesy to check my tire pressure?

In summary it's a good thing I didn't have to add a car accident to my list of woes.

Physical therapy helps

Quote of the day: "There are two kinds of cyclists. Those who crash hard and those who will crash hard."

Mike, my new physical therapist, told me this yesterday after I told him about falling off my bike. He said his orthopedist told it to him after his bike went out from under him and he felt his hip crack. It was broken, leading to a year out of commission. Of course I think he was talking about serious cyclists, not my type of bike rider, and really not everyone falls, but I liked knowing that I was not alone.

Anyway, physical therapy was great and gave me the feeling that I was doing something towards my recovery other than taking lying-on-the-couch pose. First he had me walk across the room to see how I looked (wobbly). He stimulated my knee with little buzzing electrode thingies and put ice on it. Then he gave me what he called "the spa treatment," massaging my leg.

When I walked across the room again, my knee felt better and my gait had improved.

We're going to do two months, twice a week, for exercise and treatment.

I also got the go-ahead to take walks and go to the gym to ride a stationary bicycle on the easiest gear.

However, I didn't feel well today, so I spent most of the day on the couch, sleeping and watching the Olympics. Thank goodness for the Olympics.

Goodbye physical therapy, hello bike

I am now the proud recipient of a diploma from physical therapy.

Yes, I graduated yesterday. Rob, my physical therapist, re-evaluated me and said I had achieved four of my six goals, the most important being balance.

(Hmmmm. Sounds kinda like a C+.)

I failed miserably on my arm strength, which is understandable given that my left arm still hurts from my last fall and also because we didn't really focus on my arms. At home I have been trying to regain some arm strength by lifting weights, but I took a break after my fall. I am trying to get back into it, although I don't want to do any motions that make the arm hurt.

Quad strength is the other area that I didn't pass, although he did mark me down as "making progress." I think the prednisone has a lot to do with this.

I liked my twice-weekly visits to physical therapy. It provided structure to my days. Also the therapists were nice, the music was good, I got to use the exercise equipment, and we played fun games.

Now I have to do it on my own. As most people know, it's hard to stick with a home routine. Sigh.

To shift gears a bit (sorry about the pun), Rob also said he thought it was safe for me to get on my bike again. I went home all excited and put air in my tires. I decided to first practice getting on and off. I couldn't lift my leg high enough to get on. I was frustrated.

I switched to Katie's bike, which is a little smaller. That one worked better.

When they talk about our "re-birthday" after transplant, they aren't kidding. I'm like a little kid on the bike. I teetered around the driveway, first pushing along with one foot at a time. I was scared to hop on. I need another fall like a fish needs a bicycle.

Finally I gathered my courage and wobbled up and down the driveway a few times. I wondered briefly, "Can you forget how to ride a bike?"

I guess you can't. I turned left at the end of the driveway and then left again down the next street, Sycamore Knolls, which branches into three directions, each with a hill. I turned around before it got hilly, impressing myself by staying on the bike at the turn.

I could tell that my legs haven't totally recovered, because even that small ride was hard on my thighs.

But I got a small taste of that wonderful feeling when you're cycling at a decent clip.

As a kid I biked fast on the boardwalk in Atlantic Beach, doing little tricks that made my mother squirm. When I rode without touching the handlebar, I waved at her while she sat on a bench for my command performance.

Yesterday I couldn't shout, "Look, Ma, no hands!"

But I could say to my son, "Look, Joe, I did it!"

The ball bounces on

Bounce, hit. Bounce hit.

Occasionally, I hit the sweet spot. What a rush. My goal of course is just to get them over. I do better than last time. My serve even goes in (sometimes).

Chip and I are hitting at Mount Holyoke College, on courts that abut the lake where I walk Maddie. The only sounds are of the wind rustling through the trees, the waterfall flowing, and, since this is not serious tennis, of us chatting and alternating cries of "Oy!"

That was this morning. We didn't hit for long, but it felt great. The humidity has dropped, making me perk up considerably. I had to leave Maddie behind, so I will take her for a walk soon.

I have one more session left in physical therapy. Rob, my therapist, re-evaluated me yesterday. I've made good progress with balance and strengthening my legs, but I still can't go up a big step unattended. If I get down on the floor, I can only get up by turning onto my hands and knees, putting my hands down and rear-end up (like downward facing dog), and then walking my hands and feet together.

He put in for a few more sessions so I can work on that weakness. Also there is the small matter of falling twice within about three months. He gave me exercises to do at home, but most everyone knows we're more likely to follow through if we actually go someplace.

Meanwhile I will try to set up a doubles game with some of my old teammates. We've done this before when I'm getting back into it (sigh...again) and they are very patient. My partner knows to do the running. Today even though there were only two of us, I practiced keeping my returns away from the spot where Chip's partner would be.

I wasn't always successful, but at least I'm at the point where I can think about strategy.

Trying to stand on my own two feet

About a week ago, I fell during physical therapy.

This is not supposed to happen, and my therapist was rattled. He usually circles around me and makes a quick correction if I start to lean. I was in a kind of slalom position on a balance board, trying to do mini-lunges with my back foot in a strap. When I was done, I put my left foot down, but I think my right foot got caught in the strap. Rob was on my right side while I fell to the left.

It didn't bother me as much as it bothered him. I got up and continued my exercises. The next day I noticed I had a huge black and blue mark on my shoulder.

Physical therapy has helped a lot. I actually really like it there. I passed my evaluation by showing progress but also some weaknesses, earning me the right to put in for six sessions after my first round ended.

So yesterday I was taking a bag of papers to the garage for our recycling bin. Two little steps lead to the garage and driveway. I've been up and down those steps countless times. Somehow I managed to trip over the last step and fall in the driveway.

The papers flew, and I found myself lying on my back. I looked at the trees for a while, hoping that someone would see me from the street and help me get up. Nobody stopped. Joe and Katie were both out.

My left wrist, elbow and ribs hurt the most. Finally I got up the only way I know how – rolling over onto hands and knees and pushing up from there. I had a bad gash in my elbow and sharp pain in my ribs. Joe came home first and helped me bandage the elbow. Once I collected myself, I felt it wasn't serious enough to call my doctor. I could breathe normally, although it hurt to take a deep breath and to cough, and I'm back to coughing quite a bit lately.

I did call Melissa today, and she said it sounded like it could wait until my appointment tomorrow.

In my mind now, a trip cannot just be a trip. The tears came when I got back into the house, now with blood dripping down my arm. I had to get an ice pack, but I could barely open the freezer; in fact, my left arm and hand are pretty useless now. Totally frustrated, I wondered: How can I be making progress if I trip on one step in my own driveway? And, in crazy mode, Maybe I had a little stroke.

I ruled out the stroke because I felt OK afterwords. And I realized that my problem might result from a medication issue. I guess I will find out tomorrow.

I have experienced some disconnect between my head and my feet before. I wasn't falling all over the place, but Once as a young mother I went for jog near our parents' house in Atlantic Beach (L.I.), happily sending my kids off to the beach with my mother. I was having a great run. Then I tripped on a crack and fell. I hit my left shoulder hard. (I have a big scar to prove it.) I happened to be in front of their friends' house. The friends brought me in, fixed me up, and called my parents. I'm sure they offered me a ride, but I said I'd run back, which I did, trying to keep the leaky bandage in place.

You might call me stubborn. Or clutzy.

Years later, I playied doubles the day before I was to return to the hospital for one of my many incarcerations. I felt good, and I decided I had to play. I had come home with my Hickman, which I just tucked into my bra.

I lunged for a shot and fell hard on my right shoulder, ending up in the ER. The shoulder was separated. They put a sling on and sent me on my way. During that hospitalization in Boston, my shoulder hurt more than any other pain I felt during that round of chemo. It healed oddly, and I now have a bump on my right shoulder.

Lesson?

Hmmmmm. Maybe nothing, because sometimes a trip is just a trip; it's something a lot of people do without giving it a thought.

Nonetheless, let's try this:

Pick your feet up and pay attention.

On the road, toting toys

The day before yesterday my doctor said they were going to give me a shot of Neupogen to boost my white count because it had fallen a little, from the 4's into the high 3's. He said it was due to medication and not to worry, but just to make sure everything was fine, they were doing a repeat chimerism to confirm the percentage of donor to me. I haven't heard the results yet.

Quick flash of PTSD. What if something's wrong? Low white count has signaled trouble in the past. But this is now. I know the drill: Recognize the fear and let it go. The thought leaves a cloud, but a cloud won't kill you. My white count went back up the next day.

I have several new toys to get stronger and make life easier. Yesterday physical therapy brought a cane. Who knew I'd be happy to get a cane? It makes me steadier when I walk and especially when I do the stairs. The occupational therapist, whom I welcomed after she stopped quizzing me, brought me hand-strengtheners: a squeezing thingie that looks like a cheese grater, and a tub of green "thera-putty" to mush around in various exercises. Makes me think of the old days when we copied cartoons with silly putty. She also pointed out that my walking would improve if I stretched more (I'm very stiff), so I've been doing runner's stretches, leg extensions in the bed and making attempts to touch my toes. We also talked about yoga breathing, which is always helpful.

Two of my nurses from 6A, Myra and Pam, just came down to wish me well. Myra, giver-of-pep talks, gave me one again, joined by Pam: Don't dwell on the dark days, enjoy the present, don't waste time worrying, think of good things ahead. I mentioned that I was concerned that my platelets were taking so long, and Myra said she's had patients get platelet transfusions for a year. They both gave me hugs, said they missed me and asked me to keep in touch. I thanked them for saving my life and for generally taking such good care of me, emotionally and physically.

Buried lead: Tomorrow I get discharged. I'm going to stay at Diane's in nearby Newton for a while because I will need to come to the clinic every other day to have my tank filled. A physical therapist, home health aide and visiting nurse will come to the house.