Who thought they would fly away?

When you are pregnant, many people are compelled to tell you their terrible childbirth story. I love to tell mine too, and it was a doozy each of three times, but I don't tell pregnant women unless they really really have a ghoulish desire to hear it. Sometimes it is fun, but only if both sides want to talk.

As my last child approaches graduation and heads for college, I am afraid that when she leaves I will just collapse. I went from that pregnant woman to a mother of three. The house was chaotic. They ran all around the house, participating in school theater and music (Katie) and playing baseball (Ben and Joe). The rides, the fights, the sunflowers spilling from the pockets of baseball pants, the costumes, the ice cream trips, and the wonderful moments where I wasn't exhausted and they all got along.

One left, then the other. It was hard to see them go, but at least there was one left. I know, this is great: They are successful well-rounded really nice kids. This is how I brought the up to be, right up to the part when they spread their wings and fly. But it's not totally true. I basically did not bring them up to leave. I had them for my enjoyment. Well, of course, I knew they would leave. But the time seemed so far away, I thought it never would come. I was too busy pulling Legos out of my feet.

Katie and I have spent the past few weeks looking at the mail for either a big envelope (good) or a little one (rejection). She's just about done with her college search. She is trying to decide between two excellent choices. It's been stressful.

On top of it is the busy-bodies with their prediction of my desolation. Some say, "I know we've already talked about it, but I still keep thinking about how sad you'll be when Katie goes away." Some just point it out as though it's a new thought for them.

I have no wall against this. So then, the wood planks on the floor sound creakier each time I step on certain ones. The house feels emptier. Bad idea to live through tomorrow's problems today, so I should stop. Hopefully, I will be busier and get my activities back.

I told the person who last brought it up that I am certain I will go to bed, pull my covers over my head and become a recluse who depends on food brought in occasionally.

Let's hope I was wrong.

Going in circles, but going up too

I haven't written in a while, mainly because my experiences are cycling back from after the last transplant. Such as gaining energy, gathering extra energy to go out, trying to get my mind in order and more.

I don't want to bore people.

I was going to write one headlined "Should I Stay or Should I go?" before going to an art reception and then a party. I remembered that headline from last year after my qualms about going to a party.

Both times I went, and both were fine. This year (last week) I had an interesting conversation with a professor at the party I attended. I think he was kind of talking to himself. For example: Is it true that after cancer you see every day as a gift? I don't think so. It's probably more true that the whole thing just stinks (substituting for stronger word). " I said I guessed it was somewhere in between. No, let's not fool ourselves that every day is a joy. But certain moments are.

I've been going to the clinic on Thursdays instead of Mondays for about a month. So I went two days ago. My counts were terrific! I hadn't been feeling well, regressing about a couple of months in terms of the strength in my arms and legs. I think I've written about this before. Whereas I was able to do a mini-run about a month ago, I'm back to where I have trouble lifting my feet. And my hands are shaking. I thought this would play out in my counts, but not so.

Counts were:

WBC: 8

Hematocrit: 32

Platelets: 113

Dr. Alyea said I could take a break from the Exjade, the one for reducing the ferritin level.

The other probable cause of my symptoms, many people's favorite – PREDNISONE – cannot be reduced any more now.

My platelets were over 100 for the first time. That feels good. Wasn't too long that they were down to 3 or 4 and they told me not to move.

Test result

The MRI came back clean.

Yes, there is nothing in my brain!

You know, nothing bad in there. I still don't feel as well as I did just a few weeks ago. I guess I'll just carry on. The weather is finally nice here, so I'm going to take a walk in the sunshine with the dog.

Testing, testing...again

Last week I felt like my legs were getting worse. Instead of growing stronger, they were getting more wobbly and weak. And my hands were shaking more than before.

I did go to two yoga classes, and they went better than the previous try. But whereas I had run (sort of) around the lake in the past few weeks, last week I didn't have the strength to do it.

I also took Katie to New York for a day and went to a dance concert and an art lecture at a gallery in Northampton. And went with friends to a maple sugar shack where we had delicious pancakes. I envy you Californians a lot of things, but I like this March and April tradition in New England.

So?

I was concerned about my legs. And about my hands shaking more than before. I thought maybe my red count had fallen. But my breathing was fine, so I let it go until my appointment, which was yesterday.

Sure enough, my counts were fine. Dr. Alyea printed them out for me "as a souvenir." It said hematocrit, 31.4; white count, 7.8; and platelets, 81. Then just for reassurance, because I've brought this up before, I told him I still have problems with word retrieval and memory loss. I was waiting to hear the usual: there is really something to chemobrain; so much has been done to me and I need more time to fully recover; etc. Instead he looked at me when I said "yoga" and said maybe I shouldn't push myself so hard. Then he said I should get another MRI to make sure everything's OK in my brain.

I hesitated. "But I've had MRIs and CAT scans recently." He said to do it anyway – that day – so we can put this behind us.

The first time I got an MRI I was pretty freaked out by all the sounds of banging and drilling and rifle fire. Now I've had it done so many times I almost fell asleep. The technician said it would be ready to read either yesterday or today.

I called today and didn't hear back. Off went my imagination. So many things to do, and all I can do is catastrophize. "My brain is bleeding and sending off little sparks that are making me walk with a lurch and bump into things." Or, "I beat leukemia and now, so sad, little monsters will be coming out of my head." (Don't worry, I made that one up.)

I talked to several people today who were all very rational. They all said, STOP, STOP, STOP! I wasted one week worrying about my counts, and now the MRI is taking over this week? I've had lots of tests. I've been good at going with the flow – sometimes – and sometimes the crazy person comes out. I will try to get her calmed down tomorrow.

News flash:

At yesterday's weigh-in, I was one pound higher than my normal weight. So I've gained 25 pounds. When I was so skinny, I shared my weight with everyone. I'm not telling now. I'm watching my fat intake. I guess it's the normal process of starting to eat again and also the side effects of the prednisone.

Shot time

Earlier this week I got my vaccinations. You do this one year post-transplant. I did it after my first transplant in 2003, and this is the first time since then that I've made it to a year.

So hurray for vaccines, two in each arm! It didn't really hurt, but the two in my left arm went into the muscle, so it hurt more and was sore for a few days. It felt kind of upside-down; it seems like only yesterday that I took my babies to be vaccinated. The hand-outs I got this week were the same as they give at the pediatrician, explaining "what you need to know" about the shots.

I got the shots for:

– Haemophilus B, or Hib vaccine, to prevent Hib, a serious disease caused by bacteria and possibly leading to pneumonia, swelling of the throat, infections of the blood, joints, bones, covering of the heart and also even death;

– Diptheria, tetanus and pertussis (whopping cough);

– Pneumococcal disease, a bacterial infection that can cause blood infections, pneumonia, and bacterial meningitis, an infection of the covering of the brain; and

– Meningococcal disease, another bacterial illness that can cause bacterial meningitis and blood infections.

As for the rest of the visit, my counts were a little lower but OK for me. I got an appointment for two weeks, then headed back out into the world, a brave baby who had not shed a tear through all the shots and blood tests.

It's a little stretch to compare the shots to some other things, but it feels like there is a connection.

In jogging, I have to go back to "beginner's mind" (kind of like baby mind) to make progress. This means starting with run/walks, instead of struggling to reach advanced goals.

In yoga, I had to back up a little to see a way towards progress, sort of like going back to childhood to get my shots. The week before, yoga was terrible. It was too hard, and I fought it all the way. First of all, I looked at people doing what I could do effortlessly before my last hospitalization, and it made me angry. I kept toppling over, and Erin brought me a chair to lean on. That made it so much easier, because I didn't have to worry about falling.

This week I pulled the chair over and had it ready to use before that difficult balancing part came. So I didn't have to deal with anxiety. I did better the whole class and especially the part where I used the chair.

Erin came over after and said I did well. "See, you need to accept help," she said.

If I need to be more childlike, or, rather, feel more childlike to get the necessary help, whether it's shots or yoga or running or tennis, then I need to stop struggling and just do it.

Blood in, iron out

On Monday, I started taking a drug to lower the amount of ferritin in my blood. Ferritin is a protein that binds to iron; most iron stored in the body is bound to ferritin.

According to Webmd, small amounts of iron are normally stored in the liver and heart, but excess iron will eventually damage these organs.

The extra iron, or ferritin, needs to be removed from the body either through phlebotomy, taking blood from the body, or by taking a medicine called a chelating agent that binds to and removes iron from the body.

Meanwhile, low iron, associated with anemia, results in low ferritin levels. When I look at my counts, there are many that I don't look at because I don't really understand what they mean. Levels of iron and ferritin never came into my radar.

Exjade (or deferasirox), the pill I am taking, is a chelating agent for chronic iron overload due to blood transfusions. You take five pills a day dissolved in water or juice and then wait 30 minutes to eat. Getting this expensive drug was quite a production: Calls from Dana-Farber to the drug company and insurance company, and calls from the drug company to me. It arrived at my house in a black canvas shoulder bag with an outside pocket for the water bottle that came with it.

When I took the first dose I approached it like it was a lump of burning coal.

For people who get easily freaked out by a list of complications that always include death in a small number of patients, this one's a doozy. To paraphrase: Some patients developed severe kidney problems, sometimes fatal, with most of the fatalities occurring in patients who were very ill or who have kidney problems or who take medicine that affects kidney function. Some people developed severe liver complications, sometimes fatal...and some patients developed blood disorders, in some cases fatal.

Finally, serious allergic reactions (which include swelling of the throat) have been reported in patients taking Exjade during the first month of treatment. You can also develop a severe rash, hearing and vision disturbances. If reactions are severe, stop taking Exjade and contact your doctor immediately.

Swelling of the throat is my favorite. What if you are alone and your throat swells so much that you can't speak into the phone to call your doctor? What if it's the middle of the night?

Well, a problem almost occurred, but at the last minute I straightened it out.

The pills came in five bottles of 30 pills each, separately wrapped and then wrapped again in bubble wrap. I removed the first bottle and then put the package containing the others in a safe place. I remember feeling satisfied that I put it in the kitchen (as usual), but slightly off the beaten track so it wouldn't fall out on me from the usual jam-packed cabinet.

I didn't start when planned, because I got sick. But this Monday, my problem with my blood counts resolved, I took out the first bottle, which I still had in my sporty bag after bringing it to discuss with Melissa. I took the first five pills and figured I'd take out the rest to have them handy. I looked in all the regular spots and could not find them. I looked again. Nothing. First thought: I AM SCREWED. Quickly followed by: You have lost your mind. What kind of Space Cadet or irresponsible or crazy person calls Dana-Farber and confessesferr, "I lost those pills." I couldn't do it. I kept looking.

Finally I gave up looking and tried something that Meryl taught me: You put a glass upside down on a table or counter and a missing thing makes its location known. (Thanks, Meryl!) It's been frowned on by some in these parts, so I haven't tried it.

But the other day I put a glass upside down on the counter and waited. I stopped thinking so hard. Within a couple of minutes, my mind cleared and I walked straight to a cabinet whose end extends behind the side of another cabinet, making it not easily accessible. You can't put anything frequently used there, so sometimes I throw something back there if I don't need it for a while.

There was the bag of pills. I was saved! I took them out and looked at them as though my lumps of coal had turned into gold. I hadn't felt so good in ages.

Back on track

I can stop running back and forth to Dana-Farber for a while. Joe, who is on February break, drove me in on Wednesday for a CAT scan of the sinuses. It came back clean, and my blood work went back to where it was before it started being funky.

White count, at last check, was high at 15, a sign that I was fighting infection. (Normal is 3.8-9.2). This week it was 8.8.

Red and platelets had been lower than usual, but on Wednesday they were OK. Hematocrit was 32.1 (normal is 34.8-43.6), and platelets were 75 (normal is 155-410).

I'll take it. Turns out the disturbance was caused by a virus. I don't have to go back until March.

On Thursday evening I took a yoga class with Erin at her Ahimsa Yoga Center in South Hadley. In addition to being a good teacher who explains everything clearly, she has also become my friend and knows where I'm coming from. So I feel very comfortable going in there. I still don't have my strength and balance back; Erin said the only way is to practice.

I'm probably getting something from it, but it's hard to tell, because during some of the poses my mantra is "get me out of here, get me out of here."

Today Donna and I shared an hour-long lesson with our coach George, who I haven't seen in a while. It was nice to see him. I haven't been on a court with Donna for ages, either. She has some powerful strokes.

The hitting felt great; I didn't miss very many. George said my shots and endurance were looking good, and, same as Erin, he said I just need to practice and strengthen. He said that when his father was in bed after an illness, he pushed a broomstick up and down over this head. OK... Well I have a bunch of light weights and a workout plan for using them. I just need to use them more regularly.

Both Donna and Joe reminded me where I was this time last year. I was in the hospital and just about to take a turn for the worse. Dr. Alyea gathered my family one night (Joe says is was Feb. 22) and told them I might not make it through the night. Donna and another friend from tennis, Deb, had come to visit and were asked to leave the room. Donna remembers her fear when she saw how sick I was.

Today my concerns were: follow-through, hit under the ball, keep your eye on the ball, knock the ball off the cone, hit high when doing friendly volleys. Then, take the dog for a walk before it got way too dark, and then, take Joe and Katie out for dinner, something I haven't done in a long time.

Now I think I'll go lie down.