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.