Calmer Waters

Seems like my tummy turbulence finally settled down today. As a result, I think I've eaten enough in the last 24 hours to make up for the calorie deficit of the past week. I even got up at 4:30 this morning to eat. I woke up and couldn't fall back asleep because I was so hungry. After a large snack, I blissfully fell back asleep.

I'm glad the nausea and vomiting is behind me. It really wore me out this week. I was starting to feel quite beaten down after 5 rough days in a row. Also, it looks like my shingles have almost faded away.

Now I'm hoping the next week 3 weeks of recovery time will be smooth sailing. I'm not interested in having any major scares like I did last month with the hemolytic anemia. I'm also hoping to feel good enough to get, do I dare say, 3 runs in a week. OK, how about at least 2 runs in a week.

As always, thanks for all your support. It keeps me going.

So Busy Sleeping

I've finished Round 2, so that makes me a third of the way through chemotherapy. I like the way that sounds. It was a bit harder this time even though I had only 3 days of chemo instead of 4. Basically, I had my fourth day piled on Day 1, which made me really wiped out on Monday. The typical side effects of nausea and vomiting started with a vengence on Day 2. Definitely not a recommended way to lose weight! With a metabolism cranked like a hummingbird's and an appetite of a gorilla (good visuals, huh), if I miss a meal or my meal comes back up, I lose weight. So, in the last few days, I've lost 5 pounds. Sadly, most of that is probably muscle weight that is disappearing, since I'm not able to run like I usually do.

Good news is that my shingles are retreating and my blood counts are doing all the right things. Now if I can just eat some food, I'll be doing good.

I feel like I'm getting a cancer/chemotherapy-induced eating disorder. Certain foods that haven't stayed around long in my system just don't seem that appealing to me anymore. Oh and the smells....I never know what is going to make my stomach flip. A definite guaranteed gagger is women's perfume. So, please chicks, when you visit me, please leave your favorite scented product at home. Sorry to be so picky, but I'm much more fun when I'm not hanging around the porcelain pedastal in the bathroom.

Seems like a common question I'm getting is if I'm getting cabin fever and going nuts spending so much time at home. All I can say is "There's no time for going stir crazy cause I'm so busy.....sleeping!"

Hanging Tough,

Wildwood Diva

Rebound to Round Two

After a very stressful week, my counts, body, and psyche have recovered enough to start Round 2 of chemotherapy tomorrow on Feb. 4. It seems like the culprit for the hemolytic anemia was the Dapsone. My red blood counts have rebounded to slightly below normal, but my liver is still showing signs of processing destroyed red blood cells and stress with an elevated bilirubin level. The severe fatigue faded away by the end of the week and I bounced back enough to run 30 minutes on Friday and Sunday and not have to spend the rest of the day in bed sleeping to recover. Yes, that's what happened last weekend. Never would I have thought running 30 minutes could and would be so hard to do.

I'll have another blood test before starting treatment tomorrow to make sure everything is OK to proceed. This chemo round is different than the first one. All the same drugs, just different sequences and less days. I am scheduled to have three drugs tomorrow, Rituxin, Fludarabine, and Cyclophosphamide. I just had Rituxin on Day One last time. Then if it goes well, I only have Fludarabine and Cyclophosphamide on Tuesday and Wednesday and won't have a fourth day of chemo.

Even with the trail troll this week of hemolytic anemia, the tumors (which are located in my lymph nodes throughout my body) have continued to get smaller. If you look at my picture on the blog base, you will will see tumors on the side of my neck and under my chin by my left ear. I had tumors on both sides of my neck and under my chin along my jawline. In the picture of this update, the tumors are gone. It's been over 7 1/2 years since I've been without those tumors! That's certainly something to smile about.

One troubling thing is that the shingles have reactivated on my chest and neck. If you remember, I was hospitalized in August for a week due to a serious case of shingles. They have continued to smolder since then and I have been on maintainence anti-viral medicine. Hopefully, this reactivation won't affect my treatment schedule.

Oh, in case you're wondering, cancer treatment is really, really expensive. It pays to have excellent medical insurance, which I am fortunate to have. My first round of chemotherapy including day 5 of the shot in my stomach was $24,000. Yes, that's $24,000. My IVIg treatment last Monday was $6,000. I'll let you do the math. It's no wonder that the Number 1 reason for bankruptcy in the U.S. is medical bills. So please, take my advice, don't skimp on medical insurance. You never know when life might send your health into a tailspin...like when I was diagnosed with leukemia at 38.

Back to Reality

I've been floating along on Cloud 9 with all the good news coming my way since the start of treatment; tumors disappearing, blood counts doing all the right things, tolerable side effects, etc. I've even been feeling good enough to even do a few 30 minute runs. Well, I just hit a bump in the trail. I had noticed that I'd been more fatigued than usual. I thought fatigue was fatigue, but this felt different.

I had an infusion yesterday of gamma-globulin (IVIg) to help my body fight off infections. IVIg is human antibodies purified and isolated from a pooled collection of 3000-10,000 different individuals. I've been getting IVIg for over 3 years now, helping to keep me alive. Prior to the infusion, my blood was drawn for a few laboratory tests. Well, when the results came back some of the numbers didn't look so good. I have developed Hemolytic Anemia. Basically, something is causing my red blood cells to burst and die. Thus the cause of my fatigue. My liver is coming under stress as the red blood cells plug it up, and my kidneys are also dealing with red blood cell debris.

Right now, it is unclear as to what is causing the hemolytic anemia. It could be one of the chemotherapy agents, Fludarabine, or the drug, Dapsone, I'm taking to prevent a certain type of pneumonia. My doctor took me off of Dapsone. After looking up the side effects of Dapsone, I'm surprised it ever got approved by the FDA. It looks pretty nasty. I don't think I'll be taking any more of it, whether it is the cause of the hemolytic anemia or not. I have more blood tests scheduled for tomorrow. Hopefully, they will provide some answers. I am scheduled to start my next round of chemotherapy this coming Monday, Feb. 4. That's assuming this gets figured out and my body recovers.

And if you're wondering, I still have my hair. But I did notice some falling out today when I washed it. Uh-oh. Oh well, if I lose it I figure it will be one less thing to deal with and it will grow back.

Thanks for your thoughts, prayers, emails, texts, calls, etc. Once again, even if I haven't responded I truly appreciate you thinking of me and keeping me connected to life outside of leukemia treatment. I'm good with freezer meals for a bit. And to those of you that made me meals, they have been yummy and a blessing with my exhaustion. Dan is back in town now and is doing the cooking, hospital runs, pet chores, Mocha swimming, etc.

Stay well and warm.

Becoming a Believer in Chemo

A week and a half has passed since I started chemo and I'm amazed at the response my body has had to the treatment. My oncologist says that I'm having the best response to this chemotherapy that he has seen. Hey, I like that! First off, like I figured, the infection I had in December was harder on me then the chemo has been. That said, what the chemo has done to my body is far from being taken lightly. My white blood cells have decreased 10-fold and are now in the normal range. My platelets are rebounding quickly towards normal and my red blood cells are holding their own on the underside of normal, so I'm slightly anemic. The tumors in my lymph nodes seem to be dissolving before my eyes. The only real bothersome issue for me right now is fairly severe pain in my abdomen, most likely from an internal tumor. It seems to be giving quite the fight as it gets hit with the chemo.

Here's the really good news and potentially scary if I'm not extremely careful...my lymphocytes (a type of white blood cell which are the cancerous part) have plummeted to just about 0. Yes, that's a zero! Yay, the chemo is doing its part to kill the cancer. However, it has also killed my remaining healthy lymphocytes, making me even more at risk of getting infections. Thus, I and everyone who comes in contact with me, needs to be super vigilent in not transferring germs to me. For instance, if you have been around sick workers, partners, friends, kids, but are not sick, and/or you're getting over a cold, my guess you are probably covered with enough germs to make me sick. I think it would be a real drag to have the chemo working so well, but die from an infection. Sadly, this scenario happens too often in those with leukemia like myself.

Thanks for the voice mails, emails, text messages, funny emails, etc. Even if I haven't responded, I really, really appreciate you thinking about me and it helps tremendously.

Done with Round One

I finished my first week of chemotherapy with flying colors. I'm feeling great and a bit shocked that I haven't gotten really whacked. I suspect it has something to do with the fact that I have a high tolerance for pain and suffering because I have had so many infections over the last few years that really did whack me. Additionally, I've been very symptomatic as well , so big deal if I have a few more symptoms.

By Thursday, my white blood cell counts (where the cancer is) were almost normal. My platelets have stabilized and my red blood cells have rebounded slightly. My tumors have started shrinking. On Friday, I received a shot in my stomach "fat" to help grow a particular kind of white blood cell, called neutrophils. It is a preventative step to keep me from going neutropenic, and thus losing the disease fighting capacity of the neutrophils.

I'm thrilled that I'm getting such a good response to the treatment and feeling so good. That said, I have five more months of this and alot can happen.

Shake and Bake

This picture shows me towards the end of Day 1 infusion. Literally, shaking from chills and baking because of a fever. I had a warm blanket draped over my head, several layers of warm blankets on me and then my big fleece coat on top of the blankets. I was so cold. (By the way, it's ok if you laugh at this picture, I actually think it looks pretty funny).

I got hit pretty hard on Day 1 with Rituxin. That caught me by surprise because I had Rituxin in 2006 and didn't even blink. That wasn't the case this time. I became dizzy and nauseous within 30 minutes of starting the drug. The nurse gave me an anti-nausea drug which solved that problem. Then my heart rate climbed to around 85 and stayed there. My pulse is normally around 52. My blood pressure dropped adding to the dizziness. Then a severe headache, along with chest congestion, coughing, and the fever & chills all took it out of me Monday.

Tuesday started out much better, fully rested and most of the drug responses behind me. The Rituxin did a nice job of clearing out alot of the cancerous cells from my bloodstream. It also dropped my platelet counts to a low level, but not to a level that requires any action. If my platelets drop too low, I will need a transfusion of platelets. There was also some collateral damage to my red blood cells, making me anemic. Apparently, fairly typical responses from Rituxin. So, I'll take that as a good sign.

I cruised through today with infusions of Fludarabine and Cyclophosphamide (cytoxin) not even blinking. I have two more days of those drugs. I feel so good today, that I figure it is the calm before the storm.

Countdown

I'm hoping not to jinx myself here by saying that my chemo is now set to begin this Monday, January 7. Last time I said that I came down with a monstrous infection.

If you know me, once I've made my mind up on something I'm ready to go. Needless to say, postponing my chemo wasn't ideal. Let's get the show on the road!

I start Monday at 8am with a drug that I had 2 years ago, Rituxin. Last time it made my hair turn to straw, messed with my body temperature regulation and added to my fatigue levels. That said, it reduced my symptoms once I was done with the treatments and I felt better. Tuesday through Thursday of next week I will receive two chemotherapy agents, fludarabine and cyclophosphamide. They are know to be hard on the immune system, so I suspect my already deficient immune system will get beat up a bit more. That said, I hope to come out of this better than I'm going in.

Here's where I stand: my bone marrow is packed solid with cancer, my blood is about 85-90% cancer, my immune system is severely suppressed for which I already get immune boosting drugs every 6-8 weeks, my spleen is enlarged, and I have too many leukemia-related symptoms to type out. No wonder I feel like crap so much of the time!!!

My sister, Inga, is coming from Texas to get me through this first round. She arrives Sunday and will be here for 2 weeks. Hopefully, I won't wear her ragged. The first round is supposed to be the toughest and potentially have the worst side effects. That said, the later treatments can cause chaos as the chemicals build in my body.

Ok, so here's a reminder for everyone: positive thoughts, prayers, good vibes, lots of love.... I'll take it all and need it all. Yes, I'm tough and strong, but that doesn't mean I don't need your support and will need it to get through. Plus, please let me know what you're up to, I hate having this disease be center stage.

What's in a Name?

This post is like the comic relief breather in a Cirque du Soleil show after a couple of intense acts.

I thought I might explain where I came up with my blog site name; Wildwood Diva. I named my property Wildwood a few years back, because it is really wild, 20 acres situated next to 100,000 acres of forest and I've had some unbelievable experiences here. Then, I became the Wildwood Diva, well, by default. Actually, I think I have earned it with all the experiences I have had here, whether self-created (more on that in a moment) or simply the fact of being here. A few of you know some of my crazy stories....running in the dark with a flashlight, after a large Black Bear that scampered up a tree (turns out he didn't go up the tree but was in the woods). Good thing I have a strong heart and low blood pressure because it didn't stay low. There's more on that story, just ask me sometime if you want the details. How about, accidentally starting my forest on fire and then frantically having to put it out alone....Terrifying! Don't try that at home, unless you want to lose about 10 pounds in sweat, literally sweating through leather gloves, burn your face and test your heart function. Again, you can ask me for details. Going out to warm up my truck last winter when we had all that ice and snow, walking away, and then turning around to see my truck sliding off my driveway, over a garden, down the hill, and crashing into a tree. I think the driveway was all ice and slamming the door caused a rocking motion that set my truck sliding. Good thing I didn't see it until it is was already rolling down the hill, or knowing me I would have tried to stop it. I know, I'm crazy. I could keep going and going, but I'll stop at one more. How about crawling on my knees, sliding on my butt, picking my way through a frozen ditch in heels and in the dark, because the last mile to my house was covered in ice. An ice storm had hit while I was in Seattle and I couldn't drive up the hills to my house. It took me 45 minutes to slip and slide my way home. Do you think I stopped at one of my neighbors to ask for help? Of course not. Seriously, that thought didn't even occur to me. It would have been too easy!

Ok, so maybe those stories don't qualify me for the Diva part of the name, but I think these experiences do.

Trading stares, for what seemed like forever, with a Mountain Lion in the morning, 30 ft from my house. He was gorgeous, and unlike me, was not afraid. He turned and trotted away. Rescuing hummingbirds trapped in my garage, by picking them up in my hands. They don't fight. They sit calmly in my cupped hands, until I remove the top hand and they fly away. So tiny, yet so trusting. I have so many more experiences along these lines, in fact, one happened the other night. Dan and I went to walk the dogs late in the evening. I heard an owl and we followed its call toward a corner of my property. I recognized the call. It was a Spotted Owl. Yes, that's right, a Spotted Owl. We could hear him hooting loudly in the tree. The dogs waited while we listened. I wanted to go back to the house to get a recording device. We walked about 50 yards back towards the house, when we heard him in a tree right beside us. He had followed us there. We listened some more. I couldn't believe it, getting followed by a rare Spotted Owl. I figured we wouldn't have time to grab a recorder and come back before he took off, so we shined the flashlight on him to get a good look. He didn't appreciate that and took off in full view of the flashlight beam. What a beautiful bird.

Experiences such as the Spotted Owl visit or holding a Hummingbird make me realize how amazing and full of wonder life is. There is so much of it around us and outside of ourselves, if we only slow down to appreciate it.

Recovering and Recharging

My initial date to start chemotherapy has come and gone. So, has the second postponed date. In the meantime, I have been quite sick dealing with a viral respiratory infection. Dan and I picked it up on the way home from Las Vegas. We had the same symptoms, but his were 1/10th that of mine. He's well and I'm still on the mend. This infection has been so bad, that I've felt like chemotherapy has already started....extreme fatigue, loss of appetite, nausea, vomiting, in addition to the standard flu symptoms of aches, chills, sore throat, coughing, laryngitis. I've had alot of pajama days (didn't even bother getting out of my pj's cause I was in bed sleeping so much). I told my doctor that after going through this, chemo is going to seem easy!

Chemotherapy has now been postponed until January 7. You think, "Oh what a luxury, she can pick when she starts." Well, actually if I started when I have an infection like this or any other infection, chemo could send me quickly over the cliff into Never Ever Land. Also, I need to rebuild my reserves which have been depleted by this infection. Thus, I'll take the "luxury" of postponing chemo.