Home again

I had blueberry pancakes with local maple syrup today. Hurray!

After 10 days of getting my breakfast on a tray and moving only from the bed to the chair, I have to say that it was an effort to make my own meal. I am going to take a mini-walk today, but that's about it.

I misplaced the Benadryl I bought last night for my drug-related rash, and just going up and down the stairs to look for it was exhausting. Joe found it on my bathroom counter. I guess my eyes are not working too well. I have been applying a cream, but it only works for a few minutes.

The rash is from one of the antibiotics I took. I am going to make an appointment with an allergist in Boston to sort things out. "How many rashes have you had? A hundred?" Dr. Marty asked. That's just about right.

Also on the horizon is an appointment with the kidney doctor Wednesday. The nurse who discharged me read me the paperwork that in one sentence referred to a cyst and in another referred to a cancerous lesion. I started to cry. She said don't mind what they wrote, someone was probably just typing away. I know they don't know exactly what it is. I think I had a case of hospitalitis. When Joe picked me up I got in the car and cried some more.

The nurse said that if I was worried, I should call Dr. Alyea. But what am I going to say? "I'm upset about what somebody wrote?" I didn't call. He would just say let's wait and see the what the specialist says.

Mentally,  I feel better today, but as anyone who has had a rash knows, an itch can drive you crazy.

Still not sprung

I am good to go when my nurse removes my IV and gives me paperwork with instructions and future appointments. I know one thing, that I have an appointment with the kidney specialist Wednesday, followed by a visit with Melissa or Dr. Alyea.

I wonder if it the same doctor I saw four years ago after I had been in kidney failure and on dialysis. He came in and announced, "Your kidneys are good. You never have to see me again." Ha. It would be funny if it's the same doctor.

Even though I am all set, I need to stay almost the whole day in this nice hotel. Because of scheduling conflicts, there is nobody to spring me until Joe gets here around 5 after umping.

I don't mind. It's nice out, and I'm going to take the same walk I took yesterday – up and down the Pike and outside the hospital a little. I need a new thermometer. Maybe I'll go to CVS. On the other hand, I should probably wait for Joe.

I'm reading a good book, Dennis Lehane's "The Given Day." Earlier in the week I couldn't concentrate, but for the past few days I've put a good dent in the 700-page book. I like it that my book mark now has more pages in front of it than behind it.

I'm looking forward to walking Maddie and maybe even going to part of George's tennis clinic Wednesday. I won't run around, and when they play at the end, I'll leave. I just want to hit the ball.

To those of you who say I overdo it, I'm going to keep my limits in mind. Deb asked if I wanted to take a dog walk, and I said I should really just go around the block. We decided maybe we'd just have coffee. Little effort involved there.

Emily's mother, who was a doctor, said it takes a week of recovery for every day in bed. I've been in the hospital for 10 days. The past few days I've walked and done some exercises, but earlier, when I felt so horrible, I did spend a lot of time in bed.

I'm going to call room service soon. Their chicken Caesar salad is very good.

Update

The doctors went from plan A, to plan B, to plan C and back again until they finally decided what to do with me.

Plan A was the least attractive: sending me home with an intravenous line (PICC) inserted into my arm so I could give myself several more days of antibiotics at home. Plan B was to send me home without the PICC and see how I did, and Plan C was to keep me here an extra 24 hours for observation while stopping the antibiotic.

The various points of views were espoused by the Infectious Disease service, my team on the floor and Dr. Alyea. ID wanted to do the PICC line, but Dr. Alyea said why put me through that and also risk infection.

Plan C came out on top.

I was never so happy as when my nurse, Nori, sent the PICC line people away today.

One of the infectious disease doctors, Francisco Marty, is a talented photographer and a wonderful, warm person. Even when I was sick, sick, sick after my transplant, I had enough in me to give him a big smile when he entered the room. That is good medicine in itself. He showed me the link to his recent, beautiful photos. He does a lot with close-ups of flowers as well as scenes from Boston and elsewhere. I have been enjoying looking at them.

http://500px.com/fmarty


One time I had a clinic appointment with Melissa, and he said he was coming over to check in. He arrived with three cappuccinos, one for each of us.

Katie came today and we took a little walk, partly on the Pike and partly outside. I am going to Margaret's tomorrow morning upon discharge, and Joe will pick me up there later in the day after he finishes umping.

I am still coughing, but I feel a lot better today than I did even yesterday.

One other bit of good news is that my platelets, at 150, were normal today for the first time since my transplant. (Normal range is 150-450.) Woo hoo!

Hospital happenings

The kidney doctor, a resident, came in last night and told me my options. They ranged from just watching the kidney with scans to opening me up and taking a piece out of the kidney.

I called Ben and started to cry. I felt overwhelmed like I did in 2003 when a parade of doctors all gave me different options for treating my fungal pneumonia. One surgeon came into my room late at night and said they might do major surgery to remove the fungal ball. I cried after he left. He did not have the best bedside manner. The next day my mother and I were talking along The Pike, a long hospital corridor, when we saw the doctor. He looked kind of rumpled. My mother said, "Don't worry about him, he's the janitor." They ended up taking a less invasive approach called a VATS, short for Video Assisted Thoracic Surgery.

I guess I am vulnerable from having felt so bad. I told Ben I had been looking forward to a summer of tennis and fun, and now, this. He reminded me that it is just May, with plenty of summer to come. Hearing it from him made me feel better.

I need to make an outpatient appointment with the kidney doctor in the next couple of weeks. I'm just going to give it up to Dr. Alyea. I wish I could take him to the appointment with me. It's wonderful to have a doctor you trust so implicitly.

I was supposed to go home today with a PICC line, a catheter inserted into your arm, so that I could finish the rest of my IV meds at home. Unfortunately, I spiked a fever of 101 last night, so I have to stay longer. It could have just been a normal occurrence with the pneumonia, but if it continues they will need to do further testing.

A PICC line is inserted at the bedside. I've had two. The first one went in without a problem, but they couldn't find the vein on the first try for the other one, so they had to jiggle the needle around. Bad experience.

I was receiving two antibiotics this morning. One of them stung going in, so my nurse slowed the pace, and I thought it felt better. Then a looked over and saw that my left arm was swollen, and all of a sudden I felt a sharp pain.

The IV nurse removed it and put it in the other hand. I got a a warm compress and an Oxycodone and felt better.

Diane is coming soon and we are going to walk around. It's good to see something other than the inside of this room.

Welcome to the Riviera

In front of the hospital

No, I'm not really at the Riviera. I'm actually at Brigham and Women's Hospital in Boston being treated for double pneumonia.

I am calling it The Rivieria because that's what my mother named the hospital entrance with pretty bushes and flowers around it. We used to sit out there in two wheelchairs and have a Coke. One time when my friend Margie was visiting me she played cocktail waitress and served us our drinks. You gotta have fun where you can find it. Diane and I went down there yesterday and walked down the street a bit. It was good to get some fresh air.

I have felt like I was run over by the proverbial Mack Truck, with shivers and shakes, total weakness and no energy. On a couple of days I haven't been able to eat. Talking on the phone was an effort.

It took them a day to find the right antibiotic, two of them specifically, and yesterday I started to improve. My white count is now normal, 10, while before it was 26, showing that I was fighting one heck of an infection.

At The Riveria

On the bright side, it's been fun to see many of my nurse friends and doctors. It's like old home week. A few who took care of me four years ago are taking care of me now. I feel very safe here. My sister went down yesterday to get a newspaper in front of Au Bon Pan, and the newspaper man, Steve, a character with a ponytail and handlebar mustache, said, "Paper for Ronni, right?"

I have another twist to deal with. The CAT skin which they took to further identify the pneumonia revealed what looks to be a cyst on my kidney. To get a better look at it, they gave me an MRI yesterday. I listened to James Taylor to partially drown out noise the sounded like machine gun fire and drilling. They didn't get much more information.

I am waiting for the kidney people to tell me a plan. They will probably take it out because they couldn't get more information from the MRI.

One of the attending doctors told me I'm already a miracle. If this was just a cyst it would of course be great, but

if it is cancerous it's a miracle finding it early on a scan looking for something else. Kidney cancer is difficult because there is no test for it, and once it's found it usually has gotten bigger. My kidney numbers look good, which is a plus.

Sick again

This post was supposed to be about going to California today for my cousin Nancy's 60th birthday party, but, alas, it is about planning to go and then getting sick.

I got no further than Boston. I was supposed to leave from Logan early in the morning; I felt a little under the weather Tuesday but went ahead anyway, hoping that it might pass. This morning my temperature was 101.1, so I canceled everything and went to see Melissa instead.

I have been coughing a lot, but my chest X-ray was clear. Melissa said I didn't look too bad, so I could go back to Diane and David's. Otherwise, they would have admitted me. I now have an antibiotic that is different than the one I had last week.

What is it about me and California? I went a couple of times years ago, but in recent memory, I had planned to go in 2007 and got sick...very sick. For something different, I was going to go to California with my children. Everything was purchased and booked. Then I relapsed. The airline said we could use our tickets within the year, but nobody went, so I lost all the money.

I was planning a trip with the kids and my mother to Cape May in 2003, but couldn't go because I got leukemia. Joe said no planning any summer vacations except to the Cape Cod.

Katie is going to load the car tomorrow with her stuff from college, and then she's going to pick me up and take me back home. We'll have Mother's Day all together. I was going to miss it from being in California, so there is a silver lining in getting to be with my children.

I can't cancel my hotel reservation, but I can change it to another time. I can use the flight within a year, plus a $150 dollar change fee. They get you at every turn. I can't get a refund for the $25 I paid for checking one bag. I didn't want to carry it on because of all the restrictions on liquids. I guess I should have just carried it on. Think of how many cups of coffee I could have bought with $25. Melissa wrote me a doctor's note for the airline, but I'm sure they don't care.

At least I made it to the important things: Ben and Meghan's wedding and my trip to Spain and France with Katie.

In and out of the hospital

My long-awaited visit to the GI specialist in Boston was aborted when I ended up in the local emergency room instead.

Don't want to bury the lede, so I'll start by saying I am taking an antibiotic for treatment of an infection and am feeling better, though I was admitted for two days.

It started Monday, when, all dressed for yoga, I started feeling achy. I took my temperature and it was 101.2. I was getting chills and feeling worse and worse. From my position lying down on the couch, I called Dr. Alyea and asked if I could now be like a normal person and wait it out. He said no, go to the emergency room. Joe was in Boston, so I called Meryl. What a mensch. (I was going to write mensch-ela, but I looked the word up and found out that although the word is usually used for an honorable, just man, it is an equal opportunity word.)  I threw up in her car (successfully into a bag, unlike the time I threw up into a bag with holes in Joe's car), and, thankfully, she did not throw me out.

It was dark by now, and when we got to the Baystate Medical Center emergency room in Springfield, we encountered a scene from hell. Tons of people, some bleeding, some screaming, some fainting. When I used the words "bone marrow transplant," they put me higher on the list, below acute problems but above the routine. I put on a mask and we waited it out in a corner away from the crowd.

After a couple of hours, I got a bed in the emergency room, and Joe came to relieve Meryl. Another mensch. I can't even count the hospital trips he's made with me. The ER doctor called Alyea, who told her I was his "miracle patient" and should be admitted for observation. I got a room at 4 a.m.

Though the caregivers were fine,  the system was a little discombobulated. I had given my information – history and meds – in the emergency room, yet when I got into a room, I was questioned at length by a nurse and trainee who said they had nothing in their computer and would have to start from scratch. "So, you had a liver transplant?" the nurse asked. "No, bone marrow transplant!" I replied. Having to go through it again when you're feeling sick is not fun.

Also, you could get even sicker from the food there, or, forgive the exaggeration, maybe even starve. I guess I am spoiled by Brigham and Women's, but still, fix-it chef Robert Irvine of "Restaurant: Impossible" would have a field day in Springfield. You couldn't get a baked potato, but you could get inedible packaged mashed potatoes. Surely it's less expensive to buy potatoes than to use the packaged junk. I asked for pot roast and mashed potatoes without gravy plus a chocolate pudding; it came with gravy, and the pot roast tasted like I imagine cardboard would taste like. There was no chocolate pudding. My nurse said to ask for turkey with gravy on the side instead; when it came about an hour later, I got a double order of the same pot roast, two chocolate puddings and turkey with gravy.. You couldn't even eat the broccoli, which was a grayish color. The woman who brought the food seemed upset with me, insisting I had asked for a double order of the same bad pot roast. What a waste of food.

My roommate gave me a banana, and I had that with chocolate pudding. Obviously if I was going to be there longer, I would have asked the troops to come in with real food. As it was, Chip brought me a Coke because all they had was some flavored cola. A little bit of real Coke can go a long way.

Barry came and got me out yesterday. (Thanks, Barry and Chip.) It was a nice day, and I asked Barry if he wanted to go for a walk. He said only to the corner and don't call him if I take a longer walk and get into trouble. I told Joe later, and he approved.

Having had no MSNBC in the hospital, I really wanted my "Hardball" fix, but the three Boston teams were on all at once, so I watched with Joe as the Celtics, Red Sox and Bruins all won. Among Joe's many talents, he has mastered the art of the clicker, changing channels at the commercials so you get to see some of everything. Sometimes this can be annoying, but I was into it last night. I saw my three-pointers, my goals and my home runs. I often miss the goals in hockey ("Can't they make the puck florescent?" I asked) but I definitely saw two and saw the others in replay. Then we watched "Modern Family."

Very sweet.