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!