Energy Begets Energy

As I said yesterday in my blog, I had a doctor who was a big advocate of exercise during cancer treatment. She had seen many different patients treated for many different cancers since she was a radiation doc. I have always remembered the thing she told me at one of our visits about how movement during treatment helps one to have more energy. So I am celebrating the surge in energy, as Angela called it, from getting back to my aerobic exercise this week.

This morning I did a row and saw my time for 500 meters improve over the rows I did Monday and Tuesday. Yesterday I ran errr jogged about 3 miles that wore me out. But I felt better this morning on the brisk walk I took after my rowing workout. I would love to find a way to keep this up when I feel weak and nauseous from chemo. But the best I seem to do is to walk a bit. At least it does feel good to work my way back into shape.

I'll go for my chest CT later this afternoon. Hope that continues to show improvement of the pneumonia. Not much more to report on the health front.

A Day for a Jog

Yes indeedy after 2 days of rowing, I felt ready to run (I haven't run in 6 weeks or more). Well I would call it more of a lumbering jog but it was definitely faster than the walks I have been taking. More strenuous too. It felt good some of the time. Tough some of the time. But I am on to bigger and better things while I have the chance. I'll keep doing this aerobic stuff until I have to go into the hospital for chemo again next week. My former radiation oncology doctor said that energy begets energy, and it's true. Maybe the fitness work will help me get over the weakness from chemo faster.

Tomorrow I have my chest CT to check on the pneumonia. My sister Becky arrives from Atlanta (on friday) for 12 days just in time to babysit me in the hospital. Then next week I see my doctor and go into the hospital for 5 days of high dose chemo. It'll probably be just like smashing that blast/leukemia cell pinata, easy and fun. Yeah right.

The Next Phase of Treatment-More Chemo Next Week

Though I really like to write in my blog in the morning, lately I have been exercising during that time. Today I wanted to wait until going to clinic to write just in case I got to hear more about the next phase of my treatment plan. And I did.

I got to meet up with my head doctor, Gwynn Long and his PA Tanya Helms to go over the next steps. I will finish 2 of the abx for pneumonia today after a 2 week course. I am continuing on the anti-fungal med for pneumonia probably for another month or more. That is the one I take by mouth 3x a day and have to take with a high fat meal to increase its absorption from my stomach. That may sound easy, but try eating something high fat 3x a day. Even ice cream gets old after a while. I have found that my old standby peanut butter has been especially helpful in this regard. It has plenty of fat; I like it; and it settles my stomach when I have those pangs of nausea. In the morning, I am drinking this concoction that Holly makes for me-part carnation instant breakfast in whole milk and part Ensure. For breakfast she drinks regular old coffee like I used to do. But I now need the fat and calories too much to waste time with coffee.

To check on the size of the pneumonia, I'll get a repeat Chest CT thursday afternoon. I don't know whether the pneumonia will be all gone, but they aren't going to let that stop the plan for more chemo. I'll be in the hospital next week for 5 days getting chemo 2x a day on days 1, 3 and 5. After that they said that I will get to go home and follow up in the clinic daily like I did last time.

As far as the long term plan, my doc sounds like he is leaning towards doing multiple rounds of chemo instead of the bone marrow transplant. My cancer has been very responsive to the chemo (must be kind of like the pinata), and he can hold the transplant in his back pocket for later if need be. Of course I don't love the idea of more chemo, but I have seen some people in the clinic with bad complications after transplant-complications that can be life threatening in and of themselves and drag on. I think he sees the chemo as giving me a cure (the rate is 80%) w/o all the potential serious complications associated with transplant. I know that I will be sick and nauseous but hopefully better after all of that is out of my system. I feel good right now, and I am ready to move on to the next treatment phase.

Holly and I will make good use of this time before I have to go into the hospital again next week. I started back on the rowing machine yesterday, doing aerobic exercise again. That feels really good. I don' t have the power and strength that I did before all of this treatment, but it doesn't matter. Maybe we can do something special this w-e to be together and have fun before all the hardship starts up again next week.

The Emerald Ocean

We did indeed get to the beach for the w-e. We left Saturday morning to drop Quigley off at the vets office to board for the w-e. Then we headed to Marty and Deb's house to pick them up for the carpool ride to Emerald Isle. Holly drove the whole way; an excellent speedy trip that detoured briefly for lunch at the Bogue House in Swansboro (fried shrimp and string beans) before arriving at Pam & Cindy's house about noon. We spent the afternoon out on the beach peering at the rough but beautiful green water. I stayed under the umbrella, my preferred site and recommended after chemo anyway. The others got into the water, at least some, but it was a pounding surf for sure with the high tide and strong current. It did feel great just to sit there and look at the ocean, visit with friends, and watch all of the other people swim, walk their dogs, or fish. Full summer sun and full summer fun.

Sunday morning, Marty, Holly and I took a long walk on the hard sand of the beach almost down to the point. It was nice to be out before all of the crowds and families. Just us walkers/runners taking advantage of the morning. The afternoon at the beach was quite windy and rough, but it didn't deter us from getting our complement of rays and salt breeze time. The four of us left in the early evening, stopping off to have more fried shrimp on the trip back. You have to do that when you have the chance.

I did finally attach a photo of the "blast-leukemia cell" pinata from my birthday party friday night. The finger puppets were inside the pinatas. I don't have a photo of the other pinata on my camera. I think Marty has one on her camera. Maybe she'll email it to me, and I can show it later as well.

Holy Guacamole, It's a Pinata

My pals from the Durham area came over last night to fete my birthday with cake and ice cream (and most excellent blueberry pie from Weaver St Market). Sandi got me a terrific carrot cake with cream cheese icing from Saladelia. But she had a cold with the sniffles and didn't come. We missed you.

Part of the evening was spent busting open 2 homemade pinatas that they had made for me. One was shaped to look like a blast-all purple and bulbous. When I hit it hard enough with the stick, it burst open spewing chocolates and fun trinkets all over the back porch. The other pinata is harder to describe with cones of many colors that stuck out from a central torso like area. It also rewarded me with gobs of chocolates, other candies, small toys, and trinkets to play with. It was very special to share my birthday with so many sweet, cool people. Thanks for planning the surprises. Sure am glad I managed to blow out all the candles; I want my wish to come true.

This morning we are heading to Emerald isle to stay with friends for the night. We'll get a beach trip in afterall, visiting the ocean today and tomorrow. I won't take my computer so this is it until we get back. Have a great w-e.

Interval Decrease in Bilateral Pneumonia

I had a zippy fast visit at the clinic today. I did not get to see my attending doctor, Dr Long, or his PA Tanya so I don't know the plan for the next step and when that will happen. But I did get a copy of my chest X-ray from Tuesday. It showed a decrease in the pneumonia in both lungs. Nice.

Beth and Henry went to the clinic with me this morning and then headed back to Charleston to fetch their kids and dog for the drive back to Georgia this weekend. It was awfully nice of them to come babysit me, drive me to the clinic, and do all the tasks around the house.

I opened my birthday presents this morning and Gracie appropriated this bag. Beth said she had been getting into it all morning, at one point finding it under the couch with her in it. Thought it made a fun picture.

Feeling Good

I did my walk this morning down to Weaver St Market and got us some pastry treats to eat. Beth and Henry must have left the house right after me because they met me there. We walked back along the old streets, peering at the big old historic homes, the gardens, the magnolias, etc.

I am feeling good today. Got an email from my doctor yesterday saying that the last bone marrow biopsy was clean of leukemia cells by all 3 tests they did. Also, they got more info from the potential bone marrow donors, and one is a perfect match. That is good news if they decide to go that route. Dr Long said that they need to finish up the pneumonia treatment and move on to the next phase of my leukemia treatment. I know that I will have at least 1 round of high dose "consolidation" chemo. It just makes the leukemia less likely to reappear even after a bone marrow transplant. Not sure yet when that would start. I'll probably know more on Friday when I go to clinic.

I was very excited this morning to receive an email from my old running pal and residency buddy Eloise who now lives in New Zealand with her husband and 3 children. She met her husband on a Sierra Club trip, and they dated long distance for a while until she finished her Family Practice residency. I had lost touch with her when her email address changed. So happy to have heard from her again. All the way from NZ no less.

Duke on a Non-clinic Day

We had a lazy morning at the house. I walked down to our new organic grocery store, Weaver St Market, to get some more of that terrific sourdough sandwich bread that I love for peanut butter sandwiches. While I was there, I got some pastries for Beth and Henry to have for breakfast. I bought one pecan sticky bun and one cinnamon bun for them to share. The walk was so nice-cooler and less humid than the last few days with a slight breeze. It felt good to get out and especially good to have walked for my groceries.

One of the things I particularly enjoy about living where we do is that I can walk to so many things. I can walk to the post office, a french bakery, a pharmacy, a coffee shop, an old style hardware store, Weaver St market, locopops, Mathews chocolate shop, a bookstore, the library, parks and rec where we took yoga, and a historic plantation home with a mulched trail that sidles the Eno River. What a treat! Walking and seeing all the old buildings, the shops, and the beautiful flowering trees has been such good therapy for me every morning.

We joined an old friend from Charleston, who happens to work with Holly, for lunch. We met Beth (the friend not my sister) at the Blue Corn cafe and caught up on old times. We used to all be in the same youth group at church and spent alot of time together since our parents were pals. She has been in Durham for 15 yrs. Small world. Amazing how little she had changed from her High School persona-still funny, irreverent, tall and thin. I'm pretty sure I look different from how she remembers me-bald head and all (see the photo).

After lunch, Beth (my sister), Henry and I toured the Duke gardens and campus. So we still ended up at Duke even on a non-clinic day. It was very pretty though.

Tuesday, Friday Clinic

We just got back from the clinic, and they are indeed keeping me on the tues-fri schedule for now. I got to see all of my old cronies and the nurses who take such good care of me there. My labs came back great-even my hemoglobin level has risen on its own to 11.1. The only surprise was that they sent me for a repeat chest X-ray. The last X-ray was 7-7-2008, when I was first diagnosed with this pneumonia. I am still on my pneumonia meds, of course. Hoping this chest X-ray shows great improvement from the one 2 weeks ago.

My sister Beth and her husband Henry did the honors of carting me to clinic today. They got to see firsthand my Duke blue recliner (very nice), the rigamaroll with getting my labs, and waiting to be examined by the practitioner. There weren't any real delays. We were out of there w/i an hour to catch the shuttle to the Duke South clinic to get my chest film. I had the same radiology technician today who did my film 2 weeks ago. I wanted to tell him to dial me up a better result than the last one. I don't want anyone deciding I need to have my chest opened or my lung sampled. Let's keep all of the interior parts exactly where they are.

Hot and humid today. Glad I did my walk this morning. Hope you all got your exercise in before it became brutally hot too.

A Day Off

Last week they decided that I didn't have to come back to the clinic until tuesday. It has been so nice to have a break from driving to Duke everyday. And of course, we went to Asheville for sat-sun and had a very relaxing time. Just hung out at the house, ate at our favorite spots, and saw 1 group of pals. It felt good to have some semblance of our old life back for a w-e.

Holly has gone off to work. I am about to go for a walk through town before it gets too hot. I just finished making some homemade granola for my mom to thank her for taking such good care of me the last 2 weeks. My sister Beth and her husband Henry are coming up to stay and drive me to clinic for the week. They should be here later this afternoon.

I don't have anything more to report which is great. Things are holding their own, including my stomach. Hope you all have a good monday and start to your week.-taf

Our Hill

Holly and I just got back from a walk up the big hill we usually run. I can't run yet but I am regaining my strength and endurance enough to walk many of the things that we usually run. When I get frustrated at walking instead of running, I remind myself that I had a week of CONTINUOUS chemo, I still have pneumonia, and my hemoglobin is only 10. Still I would love to be running and enjoying all the usual physical activities I used to do. In time, I feel sure.

I am sitting on our back porch looking at the overgrown garden as Holly pulls weeds and tries to neaten it up a bit. It is a gargantuan task, one that would take more than 1 w-e. But I know she will get the big bad stuff lopped back or pulled up. Nice to have a partner who will support your garden habit as well as help you through chemo. :-)

Not much else to say this morning. It is gorgeous here-cool (62F) with low humidity. The birds are out chirping and zooming and eating from the feeders. The cardinals here are molting and look a little funny. Everybody else looks pretty much the same.

In Asheville, Can you believe it?

Friday when I went to clinic, they gave me a big reprieve. I don't have to go back to clinic until tuesday since all of my abx and other meds are now home meds. They merely check my labs and my catheter when I am in the clinic now. Of course, I am still on numerous medicines including the 2 different abx and the one anti-fungal, all of which they are using to treat the pneumonia.
Holly and I decided to come to the mtns for two days. We could have left in the afternoon yesterday since I got out of clinic in the early afternoon but I wanted to make sure I was feeling okay before we made the 3 hr drive. The last time they gave me a day off I got sick with a fever and ended on abx and several new treatments. I just wanted to make sure I felt good enough to make the drive and not have to turn around and head back home.

We haven't been in Asheville since this whole leukemia bonanza started. I think it was the first w-e in june when we had many of our pals from the Triangle up for the w-e with us to hike Roan mtn and see the rhododendrons. So much had happened since then-chemo, several bone marrow biopsies, fevers, pneumonia and that's just the stuff in my world. It feels good to be here though you should see how overgrown the garden is. some of the weeds and native grape vines have made serious inroads into my garden. Not surprisingly I guess in 6 weeks. Holly has promised to take some time when it is a little cooler this w-e to tame a bit of that.

I did get a phone call from Tonya my PA at Duke with the preliminary read on my bone marrow biopsy from last week. On the gross eval they did not see any leukemia cells. By flow cytometry there are 1-2% blasts. The blasts can be leukemia cells or early maturing cells that the bone marrow makes. It was good news because it means that the leukemia is not rip roaring back. Of course, I know that I will need more chemo and/or a bone marrow transplant to be at all cured of this disease. One round of chemo, like I have had, will induce a remission (as it has for me), but it is not enough for a cure. More tough treatments lie ahead but today i am rejoicing in the mtns, feeling good, and being with Holly.

Thanks to everyone for their kind and helpful and supportive comments through the blog or via email. You cannot know how much they have helped.

A Better Day

Yesterday when I got to clinic, they let me know that they were dropping one of my abx. Yippee! It was the one I'd been on for 23 days, and it always took 2 hrs for me to get it infused in the clinic. I am still on three other anti-infectives---two are abx and one is an anti-fungal. However, now I take all of them at home, including the one I give myself with the little battery operated pump 4x a day. It hooks up to my catheter and infuses over 30 mins. I try to take it at 5a, 11a, 5p and 11p. Sometimes I get off schedule by an hr one way or another, but I know that it is okay as long as I get all 4 doses each day.

The best news I got yesterday is that if I continue to do well, they may let me start attending clinic just on Mon-Wed-Fri. A second Yippee! Maybe we can even sneak a little get away to the beach in sometime soon.

This photo is one Holly took this morning. Her sister sent me the T shirt. It has some choice words for leukemia.

Labs looked good yesterday. I am feeling more energetic and less nauseated today. Seems like a good one. You have a good one too!

An Up and Down Day with Bodyaches

I felt pretty good yesterday morning and even took a nice 45 min walk before we had to go to clinic. But in the afternoon I started having bodyaches again, especially in my upper shoulders and neck. Then I developed a sort of fever of 100.1 and felt very tired and chilled. They have changed some of my medicines again so I don't know if it has anything to do with that or not. Last night we watched a movie (Definitely, Maybe) and then went to bed. I had to take my last infusion of the imipenem in the bedroom makeshift infusion center (that is one of the new meds that they are having me take. I have to give it to myself using this small battery powered pump 4x per day). I told Holly that I'd been feeling rough since I got home from the clinic. I had the almost fever, bodyaches, feeling weak and blah.

Seems like every medicine they add (in the past 2 days they have added 3 new meds and dropped 2 old ones) upsets my stomach and makes me feel like I am back on chemo. The abx aren't as bad to my stomach as the full fledged chemo, of course, but they are certainly making me nauseated. I am so tired of feeling weak and nauseated. Really. They could stop now.

Anyway, as you can tell I feel somewhat exasperated. I never felt this bad for this long with the breast cancer treatments, so this go round is definitely more challenging-physically and emotionally. Well I am doing my best. Luckily I have Holly to smoothe my brow when I hurt and to encourage me when I am down.

More later if I have new news...taf

A Back and Forth Day Yesterday

I was exhausted by the time we got home from the clinic yesterday at 5:30pm. At various times I was going to be having surgery this morning for the lung biopsy then I wasn't. When I got to clinic, expecting to have my bone marrow biopsy pronto (i.e. a new hole in my rump) that didn't happen. Instead the PA Tanya, sent me over to the surgeon's clinic. Supposedly they were going to fit me right in and do a consult because the chest CT showed more pneumonia. Two hours later we still hadn't been seen and we had left the lunch bag back at the main clinic. We'll never make that mistake again. Finally we saw the surgeon who wanted to surprisingly enough ... do surgery. Tomorrow. Like Today right now I'd be in surgery. He wanted me to go see the anesthesia people immediately, yada, yada, yada.

Only problem was, I hadn't had any of my daily treatments from the main clinic nor had I had my bone marrow biopsy. So Mom and I headed back to the main clinic for those. By the time we got there, all the attending doctors had talked and decided that no I wasn't having surgery today. I am getting better (no fevers, responding to the abx, etc) so they felt waiting was the best course of action.

So here I am getting a few new abx and anti-fungals. Supposed to be even stronger than the old ones. One of them is a medicine that Holly and I infuse at home with a pump every 6 hrs. But I am not in surgery, and I sure do feel relieved about that.

Numbers yesterday looked great.
HgB11.2; plt's 463,000; white cells 8.9

Happy about them numbers!!!

El Skippito

When I got home from the clinic yesterday, I took a nap. I was tired from being nervous all day. Plus I was just plain tired. Sometimes I forget that I have real, legitimate reasons to feel tired. I have leukemia. I am anemic. I have pneumonia. I spend hours EVERYDAY in a clinic getting treatment, etc. Anyway, my point is that I give myself a hard time about needing a nap or being run down. But not yesterday. I was tired; I'd had big tests and news and needed sleep.

After my 2 hr nap, I walked outside to get the mail (one of the highlights of my day). Lo and behold there was a package from Amazon on the porch. Since it is close to my birthday, I thought it might be addressed to Holly. But no, it was for me. I opened it to find 2 cool children's books about a little Siamese cat named Scippy Jon Jones. I immediately read the first one aloud to my mom. Scippy Jon imagines himself a great Zorro type sword fighter named El Skippito and helps a band of dogs get their beans back from the evil dude who stole them. Turns out he slashes a pinata (for real) that his mom has hidden in his closet. The book is such a joy, especially to read aloud.

And who do I have to thank for these marvelous books? Marty (and presumably Deb) who aren't even here right now. They are up in Maine at Colin's wedding with the rest of the Riley clan. Thank you both very much. I don't know if you thought the lightness would cheer me up (it does). Or if you already know these books well. But I love children's books. I am a big Olivia fan, the series about the bossy little girl pig detailed by the cartoonist Ian Falconer of the New Yorker. I have an olivia clock, lunchbox, stickers, cards, several dolls, well you get the picture. I am somewhat of an afficionato.

Yesterday's lab numbers looked great btw. HgB up to 10.6, plt's 389,000, white cells 8.2. Pretty good looking numbers, eh.

Todays's photo has me with Olivia pinned to my hat as I sit alongside my garden in Asheville. Never forget your inner child!

Good News, Bad News

Well I'll start with the bad news first. The Chest CT did shower a bigger infection ball. But the good news is that they aren't going to rush to do the open lung biopsy. They think that if they wait a litlle longer the picture may just continue to improve just as my body has been doing. I haven't had a fever now for 3 days, my energy level is better, and I have been feeling stronger and stronger instead of worse and worse.

I'll still have my bone marrow biopsy tomorrow, but I have a reprieve on the open lung biopsy for now.
Whew!

A Big Day for a Small(er) Result, I Hope

Most days I get up and have 5 or so hours to write, piddle, pay bills, read, and get ready for my clinic visit ummm flight to denver. This morning I have to get going pronto because I have my repeat Chest CT this morning at 8am while my clinic appt isn't until 12 noon. If you remember, the CT scan is my 1 week followup from the one taken when this pneumonia was first diagnosed. They have to see if the size of the pneumonia infection ball has shrunken or not. If it hasn't, then I will have to undergo a surgery to get a piece of lung tissue. They need to know the right treatment course for the infection that is there. They tried earlier in the week to take a piece of lung with the bronchcoscopy tube. But they only managed to get a little piece, and it didn't tell them anything about the indentity of the infection.

So I am looking at today with some nervous energy. I know that I have been getting better and better each day with the new treatments they put me on (thus the ball should be smaller), but I am nervous that the result will not be in my favor. I really don't want to have another surgery right now. I especially do not want one that removes a chunk of my lung. I've seen too many lung collapses and scary complications; these don't always go "smoothly." And I don't know what your take is, but I'd say my luck is not at its highest these past few months.

But hey it will be what it is. We'll deal with whatever comes. I know that.

Numbers looked great in clinic yesterday: white cell count 7300, HgB 9.8, plt's 389, 000

Shannon, did you get off your booty (your term not mine) and exercise? I did; I walked the neighborhood for 45 mins. See you really don't have an excuse...

The bluebirds were everywhere last night. Just gorgeous jutting in and out of the field behind our house.
And we had a great visit with Miriam and Alex who brought us bread from our new Weaver St market and the most beautiful pottery piece heart that Alex's Mom made. Thanks to all of you.

Flying Daily, but Where?

I have realized that my daily visit to the clinic is like taking a flight. I just don't where I'm flying to each day until I get there. Some days after my labs are drawn and I don't need additinal blood or platelets, it's like a flight to Boston (2 hrs). Other days I get there and I need more potassium so it's like flying out to Salt Lake City or Denver (~ 4 hrs), since the K bag takes an additional 2 hrs to infuse. Then other days, I need Potassium, and the regular stuff (i.e. right now 2 different abx for my pneumonia), and blood to the tune of 5 1/2-6 hrs. So each day is a coin toss as to how long I'll be there. Some days I know that I will need blood the next day and hence to be prepared for a long day. Sometimes it's more random.

There are other similarities to being on a flight. I have an appt time that is usually the time I get taken back to the clinic treatment area to start all of the rigamaroll. But once they were so overbooked that I had to wait in the lobby 1 1/2 hrs beyond my appt time before I was even brought back to start my infusions for the day. ? Flight delay anyone?

We spend the whole time sitting in one position in these Duke blue recliners hooked up to bags of IV fluids, abx, bags of blood or other supplements. We spend the equivalent of a flight to boston, denver, or san francisco in our little chair being served by the nurses as they bring us pills, water, juice, hang our bags of fluids, take our temps, measure our blood pressure, etc.

Yesrterday I was in the chair for 5 1/2 hours since I had to have my usual 2 abx, potassium, and 2 bags of blood.
My numbers are good now so I won't report them all here. Just know that the plt's are 389, 000 and the white cells are 5.8.
The two big things on my near horizon are the repeat CT scan Monday morning to see if my pneumonia has shrunken and the bone marrow biopsy Tuesday afternoon. Other than that it' s just heal, heal, heal to get stronger, better, & more robust each day.

Well I've got a plane to catch later this morning at 10:45 am. Wonder where we'll be going?

The First Good Night

I'm not sure everyone realizes but I go to the outpt clinic everyday, 7 days a week. I needs labs everyday to check my numbers like my cell counts, blood counts, and electrolyte levels (sodium, potassium, chloride, magnesium, etc). Also, I get examined by a doctor or PA everyday and receive my 3 antibiotics that are helping me fight this pneumonia. Yesterday when I got to the clinic all of the Duke blue recliners were taken, they were double booked. And I had to wait another 1 1/2 hrs to be led back to even begin treatment. By the time I left at 5pm I was beat. I was supposed to get 2 units of blood too but we ran out of time. I'll get them today,

Last night was the first night of good rest with this pneumonia. I went to bed at 8pm. Then I got up at 10pm to drink a glass of water and take ibuprofen. I slept until 4am when I woke up hot and sweaty but not fevered. We will have to use this same recipe again and see if it works. The only down side is that I had a lot of coughing in the night as my air passages got drier and drier.

I've been up since 5:20am or so and already did a walk of the loop in the neighborhood; I feel fortunate to be on the mend.
Have a blessed one! Maybe I'll finally finish that Motherless Brooklyn book today that I have been dragging around with me, too tired or too dazed or too sick to finish until now. My clinic appt is at 10:15am this morning.

An Overdue Update

Sorry to be so sluggish getting back to the blog. I did get to leave the hospital yesterday, but they decided at the last minute to give me 2 extra doses of IV meds. Then it took the transport guy a while to get to us and drive me down the 9 floors and wait for Mom to pick me up. I was pretty nauseous on the ride home due to all the high power antibiotics they had just given me. But I got home in one piece just in time for a nice nap.

For dinner I was still pretty queasy, but I had some of my pal Billie's squash soup, bread with butter, and a terrific cake that a friend and former co-worker Michelle sent from a Texas bakery (Cakes by Janie). It was a super rich pound cake with a butter cream pecan topping. All of it was good and hopefully nutritious too. The rest of the evening I spent my time going through mail, paying bills, opening packages that friends and family had sent. I got a so many new treats, it seemed like Christmas.

Last night I had one episode about 1am with fever and chills. But it responded to Ibuprofen so that is why I need to keep the Motrin going round the clock. It took me a while to get comfortable again after the fever, but I drifted off eventually and did fine until 6am.

I am currently sitting in the clinic, my Duke blue recliner, getting my 2 abx through the catheter. I already had my labs drawn and saw both my doctor and my PA. They gave me my numbers.

Plts's 408,0000; white cells 4300 (neutrophils 2365!!!) ; Hgb 8.2 (Talk about Remission with a Capital R)

So the big issue now is to identify the bug in my lung. If the abx and anti-fungal don't cause the pneumonia to recede, then I will have to have surgery to cut out a piece of lung to identify the culprit under a microscope. So first I will have a repeat chest CT on monday at 8am to evaluate the size of the pneumonia. After that a decision will be made about the need to schedule a procedure with a heart/thoracic surgeon. One of my med school classmates is a cardiothoracic surgeon with Duke. Would it not be ironic if he did the procedure if needed?

The other procedure in the near future is another bone marrow biopsy next Tuesday in the afternoon. Have to have ativan for that day. Oh and they want to do at least 1 round of consolidation chemo with high dose Ara-C soonish.

Things are looking up. Thanks to everyone for their suggestions of what to do to get rid of the blahs. Did I mention I am bald again? This photo is of me and my nurse from 9200, the inpatient unit.

Hopefully Leaving the Hospital Today

When the doctor team rounded on me yesterday, they thought I might be able to go home today. Most of yesterday my temp was down, around 98-99. I did have 1 advil at 12 noon and that seemed to last for quite a while. Unfortunately at 11pm when they came to get my vitals, I knew I was hot. And sure enough my temp was back up to 102F. I took another advil and eventually the temp came down and I broke a sweat. I woke more completely when they came to get another Cest X-ray about 45 minutes later, only to realize that my sheets and clothes were all sweat soaked. I'll tell you, fever is serious business. I will never brush it off so easy again. I am going to be very directive with my pts about how to treat their fevers and that of their kids. They are no fun.

My hair continues to make an exit. So much falls out on the pillow or down the shower drain that is time to have this stuff shaved off. I will try to find someone who can do it today or tomorrow. It hard to sleep on a pillow covered with hair as it sticks to the surface, tickling my face.

I realized last night that I am in a funk. I am sick and tired of being sick and tired. Does anyone know how I can pull myself out of that and move back to a better place? Some of it is my extreme fatigue from all these fevers. Some is the tedium of having to be treated everyday for something ("It's always something..." RR)

When Holly came back to the hospital last night she brought a Netflix disc with her-Monty Python. I had forgotten how funny those guys are. I mean much of the humor is in bad taste or silly but it is funny stuff. It's creative too with all of their skits, cartoons, etc. No one is doing anything like that anymore. Why not? Is it just too corporate these days?

Mostly my numbers continue to improve: plt's 333,000, white cell count 2.2, Hgb 8.5 (well at least the other 2 are good)

Okay, More than a Shred

I am feeling better now, having kept my temperature under 100 for most of the day. At one point, I felt myself heating up, but they gave me a motrin, and it made it all better. My numbers came back great today. I have 303,000 plt's, Hgb 9.1, and 1600 white cells. And a whopping 40% of those are neutrophils!

Yes, I have neutrophils again folks. I can fight infections-all kinds of infections. Fungal infections, bacterial infections, viral infections. Maybe I had to lose most of my hair to free up enough protein for the white cells. Yippee!

A Shred of Improvement

Despite having the highest fever ever last night of 104.2F, I am afebrile now. My temp is "only" 99.8F. Believe me that is such a vast improvement, and I can really tell the difference. I have to say that last night was by far the toughest. I was very scared and worried. Scared that it was my last day on this earth (and who wants to die in the hosp?) and worried about why we couldn't get the fevers down with tylenol. I am not allowed to have ibuprofen so that other major class of meds for treating fever is unavailable to me. Instead, Holly went and got ice and put some in a washcloth. Then she ran it all over my body-temples, forehead, carotid, neck, limbs, arms, and back again. It seemed to lower the temp by about a degree or so. Anything helps.

My doctors haven't come around yet today. We intend to ask if they would consider an Infectious Disease consult for the fevers, if I could try ibuprofen now that my plt's are higher, and what do they think I have in my lung.? fungus?

Today's numbers: HgB 9.1, white cells 1.6, platelet's 308, 000

Today I just want a peaceful day. -tree

As it rains outside

From Holly: There are raindrops on the hospital room window. They bounce back light from the street many stories below. Teresa is in a deep sleep late this evening. Her breathing is steady, but faster than usual because her body has been so warm. Tonight her fever topped 104.9 degrees. The night nurse, a very kind man named John, gave her Tylenol which lowered her fever to 102.8. He repeated blood cultures and increased the mycamine dose. He checks her often. We waited, worried, for it to spike again, but now several hours later, it has finally fallen below 100 and she can rest more quietly. I'm resting more quietly too, paging through our photos here in the dark as the night rain ends. Waiting for the next day.

Diagnostics R Us

From Holly: Teresa just got back from having a bronchoscopy. They took a variety of lung samples, cultures, etc. to try to determine the underlying cause of some pulmonary changes on yesterday's X-rays and CT scan--to see if this is the source of infection and a possible pneumonia. She did well with the procedure and woke up thirsty and hungry--good signs for her. She's still spiking fevers and will remain in the hospital for the time being. This morning's values: Hb=7.5, WBC=0.7, platelets=233. She's getting 2 units of blood, fluids, tobramycin, vancomycin, and micafungin. Blood and urine cultures are still pending. We're in a waiting mode for the results of these various diagnostic tests. Here is the transcript:

Holly: How are your spirits?
Tree: They are pretty good, you know, for now, they are very subject to my temperature. Above 100.8 I feel washed out. Below that I feel like a person.
Holly: What else do you want people to know about today?
Teresa: Well, the bronchoscopy wasn't so bad. The worst part was the lidocaine sprayed on the back of my throat to numb it. But once they got it numb and gave me Versed, I don't remember anything. They got lots of good washings, biopsies, hopefully they will identify what's in the 2 areas they saw on the CT scan in the left top lung and right base lung areas.
Holly: How is your appetite?
Teresa: So so, there's a little bit. I'll be able to eat. Mostly I'm thirsty which is good.
Holly: Anything else you'd like to have posted in the blog today?
Teresa: Do something fun for me today since I didn't get to see outside or go outside today. Pet your dog. Smile with somebody you like. Take a walk. Enjoy company of a friend, Watch the birds.

Fever Explained

Well we finally got them to realize at the clinic that things were not right. I had a fever there and was sent for a Chest X-ray. When I got home I took some tylenol and went to bed for a nap. When I woke up, I felt really, really hot. My temp was 103.8F, even higher than when I ran a fever 11 days ago. We called the clinic, and they told us to come into the hospital for different abx. On the drive to the hosp, we got a call from the PA in the clinic. My Chest X-ray is showing a Right Middle Lobe pneumonia. So that is why I have been so sick, so feverish. That is why I have felt so fatigued.

It isn't good to have pneumonia, but at least now I know why I have been feeling so bad.-taf

"Past Cruddy to Horrible"

Teresa's feeling really bad this morning so I'm posting to the blog on her behalf. She's very weak, dehydrated and has run a fever on and off. We've just arrived at the outpatient clinic. Mondays are typically their busiest days and this is no exception. The majority of beds and chairs are occupied with patients at all stages of treatment. Most people are quite a bit older than Teresa, but otherwise they reflect many different backgrounds. Occasionally there is a younger person, but it's clear leukemia tends to be a disease of people over 60. They've taken another blood culture to see if there is something lurking or if there is a possible drug-resistant bug. The staff here is working very hard to accommodate this number of patients. They are very patient and kind no matter what's going on. We'll post more later after we've talked with the P.A.

Feeling Cruddy

It has been a busy w-e with lots of fun visitors from Asheville. Billie came on Friday to stay for 2 days and then Susan& Donna arrived Saturday. Billie made us a splendid meal of veggie pie, squash soup, and from her mom a sweet dairy pie. Kind of a turle pie with whipped cream, nuts, coconut, and caramel. She also brought a growler of the Wee Heavier beer from one of our favorite breweries in Asheville. Of course everyone partook of that except for me. Susan & Donna brought a chicken and spinach lasagne. Holly cooked green beans to round out the veggie quotient for me. It's tough to get enough fiber and micronutrients when you can't eat fresh fruits and vegetables. But I can eat anything cooked, and I love green stuff cooked. It was so good to see the pals from Asheville. Made me feel a little closer to the mtns and our Asheville home.

This is my fourth day of feeling really cruddy. I can barely stand the acheyness in my body as the long bones make blood products again and pump out growth factors. When I used one of the meds before to stimulate neutrophils (when I was having breast cancer treatment), it felt very similar. Only that time it lasted one day and then got better. This just persists and it get really bad at night when I am trying to sleep. It also seems to be associated with fevers that drain what little energy I do have left. So I am feeling very washed out, weak, and achey all at once. I haven't been able to exercise for several days, preferring to sleep for a 1 hr nap during the time I was walking previously. I know that this won't last forever, but I am tired of it already. I'm ready to feel good again and be able to eat normally (it's hard to eat when I am this weak).

I guess the good news I got today is that my platelets are back up to 100, 000 having doubled each of the last 2 days. My HgB is 9.4 today (yesterday 9.7), and my white cell count is still 0.4. I wish the white cell count would start to increase because I will have to be on abx every day until my neutrophil count (which is 0 currently) is up to 500. So I will keep visualizing neutrophils if you will.

Fevers to 100.8

As I've been saying the last few days, I haven't felt right. Then last night I spiked a fever again to 100.8. And had chills and night sweats. I don't know where the fever is coming from because I am still on 2 pretty wide spectrum abx (Vancomycin & Ceftriaxone). Hopefully I can convince them to re-culture me today and take a look at this Hickman catheter which is a little red at its insertion site in my chest.

I had a confusing visit with my Oncologist/ Bone Marrow attending yesterday. I'll try to explain the medical/clinical issues here so that everyone can understand the question. When my leukemia was discovered they did some cytogenetics tests on the leukemia cells. They showed an abnormality in the DNA of the leukemia cells involving chromosome 16. The finding is called inversion 16 because a part of the chromosome detaches, flips, around and then re-attaches. So what, you're thinking. Well inversion 16 is one of the few things with my kind of leukemia that is good news. It is a type that responds to chemo much better than most kinds; in fact there is a 70-80% cure rate for AML with inversion 16 if you use standard chemotherapy. So now my doctor is trying to figure out if it would be better to treat my AML like a typical AML inversion 16 and "just" do chemo, forgoing the bone marrow transplant until or if I relapsed. The big issue is whether this came from the breast cancer treatment or not and hence we should just go on to the bone marrow transplant. It makes me a little nervous to have a rare-ish disease (only 14,000 new cases of AML every year) and then to have the unique past of breast cancer and the chemotherapy that preceeded it. It makes me a little nervous when the sub-specialist says that he needs to phone more experts to find out their opinion. And it makes me a little nervous to consider more chemo.

I'll be honest I had to cry on my way home from the clinic yesterday. I didn't feel well anyway from this fever and whatever that is, and the idea of taking another 4 rounds of chemo (the standard for inversion 16) made me upset. As I explained to Dr Long, the first time I had chemo I lost 14# and was sick all the time. This last time I lost 8# and was sick all the time. After 4 more rounds of consolidation therapy who knows how much I'd lose. But mostly it's the nausea and vomiting I don't relish repeating.

So each round would be chemo (high dose Ara-C) two times daily on Days 1, 3, 5 in the hospital. Then I'd have a recovery period of 4-6 weeks between each round for 4 rounds (I need to email my boss and let her know I might not be back as soon as I had hoped. September is definitely looking way too optimistic). So if we started that in the next month, I might be done by New Year's. Ouch! Of course we don't really know what the bone marrow transplant entails and that can be full of complications too.

I just worry that my bone marrow has already revolted from 6 rounds of chemo for breast cancer. What will it do with an addtl 4 rounds for AML? I need to ask my Uber hematologist from UNC Dr Lee Berkowitz his opinion. He is the one who made the diagnosis of AML in the first place and has continued to stay involved in my care. He is the greatest guy and a really compassionate doctor. I'll email him the latest conundrum and ask his opinion.

Well hopefully I was able to explain the clinical question well enough for everyone to understand. If not, I'll refine it more if you leave me questions or comments. I'll post later when I have my lab numbers.-tree

Quigley's Voice

Holly pointed out to me that I used the same photo of Quig that she used a few posts back. Sorry for the duplication. But she really is that goofy and cute, and I just felt like showing everyone. Quig is the perfect dog if you're sick. She is low maintenance-just needs to run outside for a bit several times each day. She is really good at running the squirrels off the bird feeders so that I can enjoy my pair of woodpeckers, gold finches, bluebirds, and purple finches, as she did yesterday. She loves rolling around the carpet on her back to scratch just that special part between her shoulder blades. There is nothing sillier looking than a dachshund, except a dachshund upside down. Those little 4 inch legs extending into the air as they shift from scratching one shoulder blade after the other- now that is a sight.

Everyday after my clinic appt, I come home and take a 2 hr nap. She waits for me to get all cozy with my breast cancer quilt wrapped around me (this is the quilt my former clinic co-workers made for me while I was having chemo the first time), and then she jumps up on the bed so that we can nap, back to back. It feels great to that have that little warm chimichanga beside me, and she never wakes up before I do. It is heavenly.

Anyone looking for a dog should consider a dachshund. They are so low maintenance and goofy. It really is like having your own cartoon going on in your life. They take themselves so seriously and have no earthly idea they are so short. But they are not obnoxious in any way. One of my pals asked where Quigley's voice was in the Blog. Not sure, but this is my homage to her and the uplift she gives me everyday.

Yesterdays's numbers: HgB 9.2, white count 0.4 (why lower instead of higher?), platelets 25,000; just got abx, no blood products

?Coming Down with Something?

Yesterday turned out to be a weird day for me. I never really felt right and then when I got home from the clinic I was exhausted. I took my usual 2 hr nap but never really felt rested from it. Then I started to feel achey, headachey, and ran a low grade fever of 99.4 F. I kept waiting for the temperature to go higher but it never did. I started having a little nasal sniffles too, so maybe I am coming down with a virus or cold bug. I feel a little better this morning though I still feel a little achey in general. Oh well, I am still on abx and if this is going to turn into something more, I am only 15 min from the clinic (which is open all of the holiday w-e from 8a-4p). And then there is the inpt unit up on 9200 to head to if it's past 4pm. I'll be okay.

My Dad and Lynn left yesterday afternoon late after they cooked a full dinner for me - baked flounder, asparagus in butter, and scalloped potatoes. I even had ice cream for dessert (still trying to turn ice cream into Teresa). I felt funny that they did all of this great cooking but didn't stay around to enjoy it. I think they were trying to give me and Holly a little time together before the Asheville pals arrive today for the w-e. It was kind of them but not necessary.

The guy sitting beside me in the clinic looked bad yesterday. He had just had his chemo getting ready for his bone marrow transplant. His wife was telling friends on her cellphone how weak he was, how long it took him to eat a cracker, how nauseated he was, and how much he was sleeping. It all sounded so vividly accurate with my own experience. She wanted to talk to someone to learn what to expect, but the nurse kept telling her that everyone is different. Well, yeah, but I could have told her that all he was experiencing was par for the course. That she needs to make him drink, eat, far more than he thinks he can-no matter how long it takes. Dehydration sets in so fast and then you're only weaker and more nauseated. I don't know why I hesitated. I guess I didn't want to give her the news that it can be this bad and worse. If I see her today, I will talk to her and tell her my experiences and let her ask me questions. I do have to say that once things start improving they usually head upwards fast, at least for me they do.

I think unless they do a switcheroo, my mom is coming back next week. I always feel so calm when my mom is around. She is so fun and easy. I feel very taken care of-like nothing bad can happen. Guess that's why we all long for our mother's when we are sick.

I'll check in later with my day's numbers after i've been to the clinic at 11am.-tree

Up and Down, Just a Little Bit

I woke up this morning just a little less refreshed and strong feeling than I felt yesterday. I don't have any reason for it, but I don't feel bad really. I had an hour walk before we came to the clinic, so it hasn't kept me from doing anything I need to.

I am sitting in my Duke blue recliner here at the clinic getting my antibiotics. My lab numbers just came back about the same as yesterday except for the platelet count which is up enough to be sure my bone marrow is working well. The HgB today is 9.7; the white cell count is 0.5; and the platelets are 18,000. My other numbers are good including my electrolytes which were checked today. My weight was steady, but not up :-( at 118#. So I do still need to eat more. Somehow I am not doing a good job of turning ice cream into Teresa. Maybe I just need to eat a little more frequently. I don't think I can eat any more food at one sitting than I am right now. I'll have to work on the weight thing.

My Dad made us a lunch of shrimp salad and soup. He wanted me to make sure I told everyone. So I'm telling you.

I smelled the best fragrance on my walk today and realized it was a giant magnolia tree in a yard on my loop. I love all of the old plants of the south-magnolias, hydrangeas, peonies, camellias, azaleas. Thank God for all those sweet-smelling, flowering bushes!

I am sorry that I don't have much to say today. IF I get more inspired, I'll write more later.-tree

0 Neutrophils, but Otherwise Pretty Terrrifc

I am just now getting back to the blog after getting my antibiotics and labs from the day's clinic visit. I got good news today. My bone marrow is starting to pump out other cells lines as well as the white cells. So my HgB was up to 9.9 from 9.5, my platelets were about the same as yesterday (14,000-instead of dropping), and my white cell count was up to 0.6 from 0.5 yesterday. I know it doesn't sound like much but it makes a huge difference in my day at the clinic. If I do not require blood products, I get out of there in about 2 hours. As my Dad joked, it's like we are just coming in for lunch because they keep giving me an 11 am appt time and then we're done by 1pm. You won't hear me complain. I guess the only down side is that I (still) have no neutrophils. I'll just make sure I only encounter infections that those 0,6 lymphocytes can battle. ;-)

During my appt today, we had social hour. My pals Gail and Karen came down from the DCRI to visit. They both work as biostatisticians for the dept. of cardiology and have offices on the 8th floor of my clinic bldg. It was great to see them both, and it really helps pass the time to visit like that.

I took a 2 hr nap again after I got home from the clinic. I mean a hemoglobin of 9.9 is good, but it's not like you feel real zippy or anything. Well sometimes I feel zippy, but that is usually in the morning.

I had a wonderful walk this morning, smelling the honeysuckle and wisteria in the yards near our house. It was cool with low humidity, which made it very nice.

My Dad and Lynn have been installing ceiling fans all afternoon when they weren't cooking. Dad is making eggplant parmesan with spaghetti. He is trying to fatten me up because my wt was at 118# today. I am fighting to get back up to 125#, my usual wt pre-leukemia.

Enjoy the rest of this glorious day and I'll write again tomorrow.-tree

Enjoy the Good

I woke up early this morning (5am) pretty rested and feeling good. I had a big 2 hr nap yesterday so I think I just didn't need more sleep. Last night we ate out and I was able to eat an appetizer (crab cake), a main meal (halibut over black truffle risotto), and dessert (apple upside down cake with praline pecan ice cream). I bet that my weight will be good today. My appt is not until 11 am today and each day the visit has been about 2 hours since I haven't needed blood or platelets the last few days. My last 2 units of blood came from Milwaukee. I still want to encourage people to help me by giving blood. There is a Red Cross center in Durham at 4737 University Dr or participate when your workplace has its drive. Believe me I will use the blood. My last HgB was 9.5 and my platelets were 15, 000. My white count is up to 0.5. As far as I know I don't have any neutrophils yet. Fortunately my counts are increasing slowly, which is what we want to see. A rapidly increasing number is a sign of danger since it means the leukemia cells are replicating quickly. My neighbor in the clinic is a sweet 70 yo woman from W. Va. She sits at the recliner next to mine and unfortunately, is seeing her counts go up very quickly. I know that she has failed her previous treatments so this is not a good sign for her.

Yesterday I took an hour walk and did about 3 miles. I am starting to feel like myself and may even be able to run again soon. It feels great to have the stamina and energy to walk 3 miles again. My body feels better, and I rest better with regular exercise. I think it also improves my appetite. I'd like to be as strong as I was before I went into the hospital.

My hair is beginning to fall out in droves. I should have them buzz cut me at the clinic because my head will be very patchy soon. Everyone thinks that after chemo, your hair falls out. Actually some people don't lose all of their hair or their hair only thins with chemo. And it doesn't happen immediately either. You assume that right after your 1st chemo all of your hair will fall out. Actually, it falls out about 2 weeks after the chemo, just enough time for the follicles to go into arrest phase from the treatment. Last time I cut my hair shortish after my diagnosis and then buzz cut it when it started to fall out in droves (like I'm experiencing now). I actually didn't mind being bald the last time. I got used to it although it was a little cool on my neck. I happen to have a pretty good head for baldness-not too lumpy. I have to say though that people take notice when you're bald. I found that in some places people actual stare at you (you get used to it). Also, women who have had breast cancer before, come up to you wherever you are to commiserate or encourage you (that happened to me at a Lowe;s Home Improvement once). Or people tell you that you are brave. I was at the grocery store once when this very professional, well dressed woman came up to me and said that she thought I was terribly courageous for running to the store without a wig or scarf. I didn't know the woman or she would have known I never wore a wig or scarf. But still it was a nice thing to say. So I am mentally preparing for the next few days when I will be bald again. And again, everyone will know that I am sick just by looking at me. I've got them pretty fooled for now. I look skinny, but otherwise pretty normal.

I'll sign off for now and add more later at the clinic visit.-tree

MY Dad

My father and his wife Lynn are visiting for the week from SC. My Dad is a great cook so he arrived with his entourage of cooking utensils, capuchino machine ( I am not kidding), special ingredients from Charleston, and a very large cooler full of food. Last night we had one of his signature "low key" meals which consisted of flounder filets sauteed in butter and lemon, fresh green beans pan fried with carmelized onions, and carrot souffle. Everything was delicious, and it was helpful to see him prepare the meal from scratch so that I'll know how to do it in the future. I like to cook too, but I am no where near the cook that either of my parents are. I always attribute that to lack of time but honestly, I think they are both more inspired in the kitchen than I am. Anyway, I ate more at dinner last night than I have eaten in a good two to three weeks. I had 2 pieces of fish, 2 helpings of carrot souffle, and 2 helpings of green beans. I was stuffed, but a happy stuffed.

One of the cancer gifts as I call them is the chance to rework relationships because all of the sudden there is more to lose. The last time I had cancer (2 years ago when I had breast cancer), I realized that I got much closer to everyone in my family. But it really had an impact on my relationship with my father. We had been very close when I was a kid. I loved to follow him around while he tuned up old lawnmowers or worked on the family car. Even as a teenager, I enjoyed his conversation, and we often talked about what he was learning in his chemistry college courses (both of my parents went to college as "adult students"). But when my parents divorced, I cut off all contact with my Dad for a good five years or more. I was disappointed in some of his actions, and I couldn't forgive him. Eventually, of course, I realized that my anger was only hurting me. I was missing the chance to be in his life and he mine; I was missing the relationship I'd had with his mother, my MaMa. So we began seeing each other for holidays and visits from time to time. We have never regained the closeness we had when I was a child, but we have become lots closer.

When I was diagnosed with breast cancer, he really made an effort to be supportive for me. I had chemotherapy every other Friday so he would call every other thursday to wish me luck with the upcoming treatment. Then he would call during the w-e to see how I was doing. Once he drove up to Asheville for the day (from Charleston) just to see how I was doing and take me out to eat. He connected me to one of his friends, a 55 year woman who had just completed her breast cancer treatment at Duke. In short, he really made an effort to stay connected and help out.

This time has been no different. He and Lynn have had two big trips scheduled for the summer- a river boat cruise in Russia, which they just completed, and an adventure trip coming up in July to Costa Rica, After I called to tell my Dad about my leukemia diagnosis, he made immediate plans to drive to Asheville on his way to Atlanta where they were flying out for Russia. We didn't get to see each other for long, but we did have brunch together and spent the afternoon visiting.

So in my mind, I have cancer to thank for improving my relationship with my Dad. Regardless, I'll take it. I'll probably get a few good recipes out of it too!