Breathing in a box is hard to do

Yesterday I had the pleasure of taking a pulmonary function test, the one where you put a clip on your nose and then inhale and exhale with your mouth placed on a tube, kind of like you're snorkeling, only minus the scenery and the fun. I've taken this lung function test before, as I believe several readers have also done.

It's a special kind of torture usually guided by oddly enthusiastic technicians. In the past I've sat at a table near the window, but this time they put me in a glass box like a phone booth.

The first two tests involved different combinations of taking a deep breath and blowing out for as long as possible. The technician cheered me on using a volume favored by crazed parents at hockey games. 

"In in in in in in in IN!!!!!!!!!!!!!!!!!"

"Out out out out out OUT!!!!! A LITTLE LONGER! KEEP GOING KEEP GOING KEEP GOING!"

Out of the corner of my eye, I could see the line going up and down on the machine that made a real-time graph of my performance. I got kind of dizzy. Then, when he closed the door, I got nervous. So I switched to my yoga breathing, concentrating on belly breaths as I made patterns with my breath, clip on my nose and tube in my mouth. I took a few regular breaths and then a few more after he shut off the air to the tube (this really felt like a kind of torture). Then in in in, hold, hold, hold, and out out out after he turned the airflow back on.

Redo!

The technician opened the door and told me I wasn't doing it right because I had exceeded the short amount of time allocated to this test, and the machine was stopping mid-way. The reason? "You're too relaxed," he said. "You need to breathe faster."

OKaaaaaay, so you're closed in a box,  you succeed in relaxing, and it gets you into trouble. We did it again, and this time I breathed more quickly and forgot about relaxing. We did it a few more times until he finally let me out.

Diane had come with me and was watching all of this with wide eyes. Since the testing lab is just down the hall on the same floor as my room, we were allowed to walk there and walk back. My walking is improving, but on the way back I was unsteady. I wonder why. I don't know if I "passed." I assume I did, although I didn't get any official report.

I did finally get a report on the doctors' plan for what to do with me. Although the CAT Scan showed the area on my lung to be slightly larger, they are optimistic that I am improving. I haven't had a fever since Sunday, and I feel better. The thinking is that the spot on my lung might shrink as my symptoms improve. So...they are going to put me on an oral anti-fungal and antibiotic, watch me for 24 hours in the hospital and set me free.

Which means I might be out of here by the end of the weekend. Here's hoping.

The things people say

Because I have no central line, I need to be stuck by a phlebotomist for every blood draw. I expect this at least once a day, but it gets annoying when I am repeatedly stuck each time one of my many doctors decides to order another blood test. Today I was stuck several times.

The phlebotomists are usually quick, quiet and efficient. For some reason, many are Russians. One man looks just like George Costanza. The young woman who got under my skin today, literally and figuratively, was none of those things.

As soon as she was in the door, she said, super-cheerfully, as though wondering what flavor popsicle I like, "What kind of cancer do you have?" How should she know, right? But it was the tone and the manner that got me. A general question like "How are you and what brings you here?" would have been more appropriate.

"I don't have cancer," I said. "I had cancer." (Meanie? Sourpuss? I think not. I feel like it was a justified reaction to her clumsy question. Do you walk up to someone in a wheelchair and ask, "Oh, what's wrong with you? I think not.)

Oh, she said, "What kind of cancer did you have?"

"AML," I said.

"Oh, never heard of it."

"It stands for Acute Myeloid Leukemia."

"Oh! I never heard of that either!"

(Thought bubble: "Just draw my blood and and let's leave it at that.")

She drew my blood and perkily exited.

I had other visitors today. A new doctor from thoracic came by -- probably my fifth -- and explained that the CT-guided needle biopsy is probably in order to make sure we're dealing with a fungus as everyone thinks we are. Then probably I will need the lung resection, he said. "Of course we're surgeons, and we love to operate, but we'll take into account what your doctors say." 

My team came in shortly after that, and Dr. Jacobson said they had no plans for either invasive procedure. He said he and Dr. Alyea agree that we should continue with the IV antifungal and antibiotic and then repeat the CT scan at the end of the week. Dr. Alyea then came in and said he had no plans for either invasive procedure.

(Thought bubble: I love you guys!")

Good news: My "people" don't want anyone to start going at me with pointy instruments.

More good news: I feel fine and am getting stronger every day.

Bad news: I will be in the hospital for at least this week. 

Fungus continued: fixable but frustrating

The tale of the fungal nodule continues, getting more confusing each day.

They took me off the IV antifungal Ambisome after one day and put me on another, more kidney-friendly one, Micafungin. They also put me back on an antibiotic, Ceftaz, in case there is some bacterial involvment. 

Meanwhile, since the nodule has gotten quite a bit bigger, they want to be more aggressive about treatment. Probably. Possibly. Yesterday, Dr. Jacobson, the attending in charge of my daily-care team, and Heidi, one of the PAs, said someone from thoracic surgery would come in yesterday and tell me the plan. Nobody came, except for a doctor from Infectious Diseases (ID) who echoed that thoracic would tell me my options.

A young doctor from thoracic showed up today and said these were my options: needle biopsy, bronchoscopy and, last resort, surgery (which I had six years ago and which has an agonizing recovery period.) Also, I need platelets (I'm down to 6) but Heidi had said they were going to hold off in case I need them in advance of a procedure. The doctor from thoracic said they weren't doing anything that fast and that I should get my platelets. And she said possibly they might do nothing other than check if the new anti-fungal is working.

Heidi came in and said no, they were going to hold the platelets, at least until they expire on Sunday or if I start actively bleeding. She basically said to ignore the young doctor from thoracic, who was probably just a resident or a fellow doing advance work. About half an hour later, the doctor from thoracic came back in and said she had looked at the film and hadn't realized how large the mass had grown, so they should probably proceed at least with the needle biopsy, maybe even tomorrow. She reiterated that I should get the platelets. At this point, I'm not getting them today. We'll see what happens tomorrow.

"Don't lose sleep over this," she said in conclusion.

I already asked a couple of doctors if they thought it was lung cancer, and got a decisive no.

So it's fixable but frustrating. I was hoping to get some distance, and here I am back in the hospital, with the world passing by.

But hey, I'm here, and in many ways I'm getting stronger every day. So go figure. I hope to at least find out the plan tomorrow, because the back-and-forth makes it all worse. 

Stuck in the hospital a little longer

They did a CAT Scan of my lungs today and found that the good old fungal nodule had grown. Once again this means no super-quick discharge. Forget about 24 to 36 hours.

Sometimes it goes away entirely, but when my system is immune-suppressed, it starts to come back. Today's scan showed that it was larger than when last checked a month or so ago. The doctors hoped that by this time my stronger immune system would keep the fungus at bay, but that doesn't seem to be the case. I have been taking the drug Voriconozole for a long time, but they are now going to put me on an IV medicine, Ambisome, while they compare the past scans to develop a plan. They are also going to check the "Vori" level in my blood to see if it is absorbing properly.

I had another low-grade fever this morning. Adding this all together, I'm really not sure now when I'll get out. I hope it will just take a few days to figure out what to do about the fungus.

I got permission to leave the floor this morning, so I put on a heavy mask, walked one length of the Pike and sat in a wheelchair in the sun outside at a nicely-landscaped entrance that my mother had dubbed The Riveria. I read the New York Times and enjoyed the fresh air. In the elevator on the way back, however, I got dizzy and felt like I might faint. I knew that my blood pressure had fallen. I made it back to my room, and when the nurse took my pressure (standing) it was 65/54. The episode earned me five hours of IV fluids. Actually after I sat down and had a drink, it already started to go back up.

Now I'll need a new book and maybe a movie to get me through the rest of my stay. Arrrrrggggghhhhhh.

Hospital stay extended

I was supposed to be discharged today, but I have to stay a couple of extra days because a 100.8 temperature snuck in this morning. My temperature has been normal the whole time I've been in the hospital, and it was normal all of today, so that tiny spike is a bit of a mystery.

All of my blood cultures came back normal, so they took me off antibiotics and will just watch me for another day or so to see if I'm OK. 

Nothing eventful has happened, unless you count the hour I spent lying on my side after a physician's assistant put liquid Colace in my ear in hopes of loosening the wax that has been bothering me. She then tried to suction it out; unfortunately the home remedy did not work, so she ordered prescription drops. I can't hear out of that ear. Just get me a crochet hook!

I've been having a good run with "Seinfeld." I watch it a lot, so it's amazing that I often see episodes for the first time. During my winter-spring hospitalization, my friend Barry, knowing that I like "Seinfeld," brought me a tiny wind-up pony that reminded him of the "pony episode" in which Jerry gets into trouble by casting aspersions on pony-lovers. I played with the toy and it made me laugh when it trotted across my table, but I couldn't relate because I had never seen the episode. It was on tonight, and I finally got the full meaning of the joke. 

Last night, I watched the first of the Keith Hernandez episodes, which I had also never seen, and tonight, after I switched channels for my second "Seinfeld," I caught the second part of the Hernandez story.

Yes, this is what it comes down to sometimes. Oh well, it makes the time pass.  

Have lamp, will travel...to the hospital

I'm probably the only person who carries a lamp into the emergency room. Well, I didn't actually carry it. Joe did when he brought me to the hospital last night.

Yes, I'm back in the hospital, I hope for only a couple of days. Diane and David are gone for the weekend, visiting their daughter, Lily, at Macalister College in Minnesota. So Joe came to "babysit" me. He came on Friday after the Red Sox game, and we spent a pleasant Saturday together. He did some reading for school and watched the Celtics game, I sat on the couch and read Zadie Smith's "White Teeth," which I am really enjoying, and we took a walk around the neighborhood.

Then I watched the news while Joe made a good dinner: linguine, chicken and vegetables. Around dinner I started feeling a little sick. Took my temperature: 99.5, no problem. Took it again. 99.9. Then I started shivering and shaking. After I sat down with Joe to watch the Bruins game, I felt that the whole thing had passed because the shivering had stopped. Wrong. It stopped because my temperature had gone as high as it wanted to go: 100.6. They tell you to call at 100.4. I took it again and it was 100.5. "It's going down," I said, ""maybe I don't have to call." Come on, Mom, call," Joe said. He really was babysitting  because I really was acting like a kid. "Do you want to wake up at 2 in the morning with a fever?"

It was the same time last year (Boston Marathon), when I went in for a regular appointment and discovered that I had such low blood counts, plus a fever, that I needed to be admitted. That turned into a pretty long hospital stay during which I discovered I had graft failure. I catastrophized: what if this fever is signaling the same thing? What if somebody up there is playing a big joke on me and making the same thing happen a year apart?

No, no, no. I didn't even feel that sick. Sometimes a bug is just a bug.

I was sorry to lose the extra day with Joe. He had brought some movies, and we were going to take a walk and have dinner (cooked by him again). Still, I knew I should called Dr. Alyea, and, as expected, he said to go to the Emergency Room and then get admitted for a day or two of IV antibiotics. He said they would do blood cultures which would probably reveal nothing, but it's better to be safe than sorry.

I grabbed a few things and put them in a bag, and at the last minute I remembered the lamp. Those hospital rooms are so depressing without that extra touch.

As soon as I got IV fluids in the ER, my temperature went back to normal. But I'm still waiting for the results of the cultures. I'm back on 4c; I waited in an emergency room bed until about 4 a.m. and by the time I got settled in my room, I didn't get to sleep until around 5.

My platelets are befuddling. I had gotten two bags on Friday, so I figured I was all set at least until Monday. But I only had 8. So while I was in the ER, I got a bag of platelets, probably ones donated by my sister. I heard they were washing them, and I got all upset because my doctors and PAs had agreed that when they are matched well with me, the platelets don't need to be washed. (Washing them takes out the impurities but usually dilutes the effect the transfusion will have.)

I was wrong to worry, though. I had 48 platelets this morning. My hematocrit is 23, so I do need some blood, which as of 8:30 p.m. has still not arrived.

Oh well. Small potatoes, and at least I have my lamp.

Bone Marrow drive planned in Boston area

A Boston "Marrowthon" is scheduled Sunday and Monday in Brookline for a little girl named Eve who needs a bone marrow donor and cannot find one on the registry.

My friends PJ and Ann posted the information is their blogs, and I'm trying to help spread the word. All it takes is a quick tongue swab to find out if you could potentially be a life-saving donor.
The drive will take place at Congregation Kehillath Israel (617-222-9155. ) More information, such as the address, is on the flyer. Here's the link: http://www.giftoflife.org/flyers/eve.pdf

Ins and outs of retail therapy

Wednesday at the clinic was a breeze. Because my "tank" was so full from Monday, I didn't need anything. Melissa and Dr. Alyea seemed very pleased that I had 25 platelets. I'll have to see what the results are tomorrow before I get too excited.

I think I'll change the subject for this post so that everyone doesn't get too bored with platelet counts. I'll turn to something a little more "exciting," if that's the right word: shopping.

Earlier I wrote about the Internet shopping I did while in the hospital. I ordered a white button-down shirt and a mint/mist long-sleeved T-shirt from J. Jill, among other things. I liked the white shirt, with its bit of detailing, but the T-shirt (medium) was too big. Thus began shopping spree II.

My J. Jill wad of receipts, returns and exchanges is probably now almost as long as my medical record. Last week, I put on a mask and gloves and went with Diane to the J. Jill at the Chestnut Hill Mall to exchange the shirt. We picked a quiet time when the mall was pretty empty, so I wasn't too worried about going in. Diane had bought a pretty purple sweater from their new collection, which happens to feature my color, purple. So while the saleswoman investigated the availability of the shirt, I sat in a chair and Diane brought me piles of clothes in case I wanted a little something extra -- like her sweater. Also, I've lost so much weight that I figured I could use a couple of pairs of pants.

Over came the sweater, plus a lavendar T-shirt for underneath and a purple tank for warmer weather.

"I'll take them," I said.

The pants were more problematic. At 5'9", I usually weigh around 140 (I know, we're not supposed to tell our weight, but so many people have seen mine in the past three months that I don't care). In the hospital, when I was having kidney trouble and retaining water, I gained about 40 pounds. My legs were so heavy I could barely move them. Anyway, now I'm 125, hardly have an appetite, and have to fasten my belt extra tight to hold my baggy pants up.

So I took home two sizes, 8 and 10, of a pair of beige linen pants and chocolate brown capris.
Both were too large. Meanwhile, the saleswomon said to come back for the mint/mist shirt, so I couple of days ago we returned to pick up the shirt and exchange the pants.

Of course I saw something new this time: A pair of chocolate-brown pants made of silk and linen, and a tan sweater (love those display artists) shown next to it, over a white shirt just like mine! Got the tan sweater and brown pants (size 6) and exchanged the other pants for 6 also.

I know I've lost a lot of weight, but still, I don't think those sixes were really sixes...more like eights. I've heard that manufacturers have changed their sizing so that so that women will feel thinner and more likely to buy more clothes in "smaller" sizes that are really just the larger sizes remarked. The capris and the new brown pants fit, but the light linen ones practically fell to me knees, so I had to take the linen pants back.

Actually, Diane took them back, and since I had become obsessed with new socks to wear with my new clothes (no excuses, my feet didn't shrink), she stopped at the Gap and bought me a black pair and three cool striped pairs, all with motifs including purple to match some of my new stuff.

I assume that after chemotherapy, many people find themselves with a wardrobe of clothes that are too large. Of course you can just make do, but it's nice if your pants aren't falling off. You don't want to buy too much; some people probably show more restraint than others. But you feel like you deserve a treat, and it's a great distraction from check-up anxiety and all those things.

Problem is, when you regain your appetite and your weight and go back to your regular size, you'll be stuck with those small clothes and the temptation to say, "I used to be so thin!"

The waiting game

Yesterday I spent nine hours in the clinic; I think that might be a personal record. I got there at 11 a.m. for bloodwork and didn't leave until 8 p.m., due to time spent waiting for a chair in the infusion room and then more time waiting for preparation of my two bags of blood and delivery of my two bags of platelets.

I bring a lot of things to read, but I also spend a lot of time spacing out and picking up bits and pieces of peoples' stories shared in the crowded waiting room. Yesterday I sat next to a cheerful middle-aged woman with braided blond hair who was telling the people next to her that she was just meeting with her doctor instead of starting chemo, which she had put off by a day because she was so scared. Later I sat in the infusion room next to a man who had a reaction while getting chemo. The nurse had to stop the chemo for a while, and he kept asking when they were going to start it again while his wife and daughter tried to calm him down with Swedish fish.

Finally his rash cleared up and they started the chemo again. "Is it almost done? How much more time do you think? I'm going to call the nurse," he said repeatedly and loudly. His wife hissed at him. "Don't call the nurse. She'll know when to come." The nurse did indeed come, and he was actually done before I was. Somehow I managed to fall asleep during all of this.

On a positive note, Dr. Alyea was pleased that I held on to 12 platelets again and said that we'll see how I do this week and then maybe I can go to twice a week instead of three times. I haven't needed blood as frequently as platelets, although I knew I needed it yesterday because I was light-headed and weak. (My hematocrit was 25...not terrible, but low enough to feel it.) After a day like that, I usually am pretty beat the next day; today I slept late and then fell asleep for a couple of hours on the couch after forcing down some cereal.

I hope that cutting my visits by one day will help me start getting a little more distance. As it is now, I have to deal with "check-up anxiety" every other night. But I know that time is the only thing that will give me real distance.

Friday update

I waited three hours for my platelets today. My pre-transfusion count was actually a little better, meaning I might be holding on to them better or maybe making some of my own. On Monday I was as low as 2, (thousand), Wednesday I was 6 and today I was 12. Woo hoo! Obviously far from normal, but up is good.

While I waited in the clinic for my platelets to show up, Diane was among the good samaritans over at the Kraft Family Blood Donor Center donating platelets. Not all the platelet donors are giving directly to someone as Diane is to me. One woman was celebrating her 100th donation and was presented with a cake, which the others shared. Diane said it was a little tricky to eat, because the arm that is attached to the machine is immovable.

Diane got a travel mug today marking her 10th donation (she's been going every week). For her fifth donation she had received a pack of cards.

She says she can see why people become committed to donating. There's a sense of comaraderie, a satisfaction in doing something that really helps other people. Sometimes when the regular infusion room is full, I get my transfusion in the Kraft Center. The donors sit on one side of the room, the "receivers" on the other. They always seem to be having such a good time on the other side, laughing and chatting with the nurses. Of course the nurses laugh and chat with the patients too, but it's a different feeling.

An elderly relative wondered if when Diane donates, the two of us lie on a bed together and the platelets pass by tubing from her to me. It felt like an odd question, but on second thought, why expect anyone to know the process?

There is one needle in the donor to which three tubes are attached. One takes the blood out and a machine extracts the platelets from it. The other is giving the blood back. The other contains an anticoagulant. The platelets are bagged and held for about three days while they are checked for impurities. Then the recipient receives them though an IV drip.

The platelets build back quickly, so it doesn't harm the donor at all.

Today I wished we could just be connected by that magical tube. Finally, though, my platelets did appear. They pre-medicate me with Benadryl to keep me from breaking out in hives, which has happened many times. When I got back to Diane's, I konked out.

Follow-up to white blood count obsession mentioned in previous post: I got a shot of Neupogen Monday, pushing my WBC to 8 (high normal) on Wednesday. I loved looking at that number. Today it was back down to 3.5, which is OK too. Also I got my last chimerism results. I'm 100 percent donor!

Someone asked this question in the comments, so I'm adding the answer here. To find a place to donate platelets, contact the Red Cross or your local hospital.

Transfusions at the clinic; shopping on the web

Went to the clinic today shouldering some anxiety about what my counts would be. I knew I'd probably need blood and platelets, but it was the white count I was starting to obsess about. What if it had plunged, signaling something bad? With help from Diane, I reasoned through this. I got my blood checked every day in the hospital and I didn't obsess (well, not too much, anyway) about my counts. Just because I was going into a different setting, doesn't mean my results should be bad. Breathe in, breathe out. Think of something else. I did those things and also tried Wendy's suggestion; Every time you have a "bad" thought, soothe yourself by substituting a good one.

I didn't feel well this morning. I was weak and dizzy. My blood pressure turned out to be very low, and when I saw Melissa she said I needed blood and was probably dehydrated. My hematocrit was 22, and my platelets were 2!!!! I got transfused and although I still feel shaky, I think I'm feeling a little better. My white count actually was down a little, to 2.9, but Melissa didn't seem concerned and ordered a shot of Neupogen.

I have been on an internet-buying binge. I don't usually like to order from catalogues or the internet, because I end up sending most of it back. The packages arrive daily, and David announces, "Package for Miss Gordon!" Much of it is piling up in the corner to be returned, but I have kept a few things. I'm not done yet. My cousin Jeanne visited yesterday looking great in a striped T-shirt; she sent me the link and I'm going to order it.

It's a way of showing that I'm alive and that I plan to continue living so I can wear alll this stuff.

Transitions, transitions

I am safely ensconced at Diane's, my patient belonging bags piled in a corner in my niece Lily's room, where I am sleeping, a paper bag filled with prescriptions tucked in the corner of the kitchen, my loaded pillbox on the counter.

I'm trying not to spread all over the place, but that seems to be what's happening. Diane and David have been great, taking care of me and making sure to get me things so I only have to climb the stairs once a day.

It is, of course, great to be out of the hospital, and I don't want to complain, but...

I've had this feeling every other time I've left the hospital: a feeling of withdrawal, a sense of loss. Where did all the nurses go? I've read about the "post-partum" depression that often accompanies discharge, so I know that it's normal and that it will pass. The rainy, damp weather isn't helping, either. Part of it is that when you're in the hospital actively fighting, that takes all of your focus. Now that I'm entering into a new phase, which of course involves a different kind of fighting, all that I went through is beginning to hit me more.

It takes extra energy to be in a house, going up the stairs, sitting at the table for dinner. So I am kind of drained and droopy. Today I made my first clinic visit for platelets. Diane came too and wheeled me around. I had my cane but I couldn't have done all that walking.

Also of course I totally appreciate being here, because it's only 30 minutes from the clinic and they're making me feel at home, but it's not my home, with my dog pestering me and my daughter singing in the next room, playing the piano, having tea with me in the kitchen or reading or watching TV together in the den. Also, soon, Joe will come home from college and make the house even more lively, and as summer approaches, Ben will be around more. I'm not really sure when I'll get home...it depends on when I start making platelets.

I picked up a copy of President Barack Obama's "Dreams from my Father," and it has really captured my attention. It is helping me focus on other things.