Headed to Round 4

I start (I'm assuming everything is fine) Round 4 of chemotherapy on Tuesday, April 1. I have been starting chemo on Mondays for the past three rounds, but it made for a really long first day. So, now on Mondays I have my blood tests and oncologist appointment and then if everything is ok with my blood counts, chemo starts the next day.

I'm expecting this round will be easier than the past ones, as I finally have the right combination (It's called a cocktail. What a misnomer!) of anti-emetic (anti-nausea/vomiting) drugs. I have to use four different anti-emetics spaced out throughout the day and night. Pretty crazy. Especially when my doc told me before chemo started that I might not even need anti-emetics, as alot of people tolerate this chemo pretty well. In fact, one of the drugs my doc added, he hardly ever uses with patients. I have to take 3 pills of this new drug spaced apart by 24 hours. Get this, each pill costs $150. It's called "Emend". I think it should be called "Amen!" because it seemed to be the missing ingredient for my special cocktail. So now, I get to say, "Yum, Yum" instead of "Oh No" to food.

Drugs Because of Drugs

I have been having abdominal pain the last week or so, with it getting worse the last few days. I had an ultrasound yesterday to try and determine what might be causing the current pain. My doctor calls them "mystery pains", because the cause of a few of my severe abdominal pains could never be identified. Well, it turns out I have some inflammation in the junction between my stomach and small intestine. I probably have inflammation in my stomach and intestines, but they can't see it via ultrasound. I'm now on some medicine to hopefully reduce the inflammation and pain before I start Round 4 of chemo next Tuesday.

This inflammation is most likely a side effect of the chemotherapy drugs or other drugs that I have to take on a daily basis. I doubt it is because of my current chemotherapy diet of chips & dip and hot fudge sundaes.....

Daily Reminders

No matter how tough things may seem in one's life, it's important to have daily reminders of what makes life fun, worthwhile, and interesting. It's important to not tune out the reminders, but keep them front and center. My pets are a few of my reminders, and they have a way of not letting me forget that Life is Fun.

Here are two of my dogs in my truck, Spring on the left, and the infamous Wiki. They are letting me know in no uncertain terms that I'm not going anywhere without them. And my big 140 lb. dog, Mocha, hadn't even gotten into the action yet. I was simply unloading a few groceries and they decided to push me out of the way and take over the truck. It took several minutes to get them to believe that I wasn't driving off again. In the meantime, I had a good laugh and some smiles.

It's Not About the Hair

Yes, I still have my hair, albeit it feels kinda like straw. Being short, it makes for some fabulous bed-head styles in the morning.

Let me tell you, this chemo, cancer thing is NOT about the hair. So what, if it had fallen out. It would have grown back. What this chemo, cancer thing is about is the mind. It's a mental thing. Sure, I've had my share of tossing my cookies, not eating, laying around lifeless, battling another infection...all of which suck and are brutal, but the war this disease wages with my emotional and psychological state is impressive. This week has been a tough mental battle. Leukemia has taken so much away from my life already. I've simply adjusted to the loss of things as "normal" and accepted it. Now chemo has taken away two of my favorite joys in life; spending time with my friends and running. I've had to be socially isolated (it feels like solitary confinement) because I can pick up an infection so, so easily and also sadly, I haven't had the energy or felt good enough to spend time with people. And the running. Chemo has taken away one of my loves and my major coping mechanism. Sure, I can still run a little bit. However, it takes my entire will focused on running and doing it. It is really hard to run even 30 minutes. I know that may seem like alot to some of you, but for a marathoner that's not even enough time to get warmed up!

So, how am I coping without running? Ok. As those close to me say, "I'm mental". :-) However, it was so much easier when I could run. Like in a race, I must focus on getting to the finish line the best I can. That's what I'm doing now. I'm running a marathon in my mind. I have some huge physical challenges still in front of me, but I know that the finish will feel so good and the accomplishment of completing this challenge will leave me feeling better, stronger and extend my life. I'd say the reward is worth it!

Thanks to all of you that take the time to email me long notes, call me and leave messages, text me, etc. I really, really appreciate your support and love hearing about what you're up to. It seems that going through this challenge has made me quite introverted, as I focus on healing. Thus, I'm not so good right now at responding.

All the best,
Wildwood Diva

Half-way Done!

I'm Half-way through with chemo! I went through Round 3 of chemotherapy with minimal side effects. My doctor changed my anti-nausea medicine plus I took more of what I had and that seems to be the ticket. I've been quite tired which is to be expected, but I'm perfecting my Lounge Lizard persona.

My blood counts are still doing all the right things and my tumors continue to disappear. My pain in my bones and from the tumors is decreasing. My bone marrow finally has something in it other than cancerous cells (when I started chemo my bone marrow was packed solid with cancer). It won't be until after I finish chemo at the end of May and have recovered a bit before I have a battery of tests to see how well the chemo worked. So until then, I'm cautiously optimistic.

Round 3 Going Forward

My neutrophils bounced back from their lows enough that I started Round 3. I'm done with Day 1 and Day 2. No issues just tired and slightly nauseated. When I finish up tomorrow morning, I'll be halfway through with chemo. Yay!

Is this Legal?

It's illegal to drive and text at the same time, Duh! Soon it will be illegal to drive and use a hand-held cell phone. So as my dog, Wiki, comforted me on the way to our appointments, I couldn't help taking a picture of her with my cell phone, while I'm driving. She was just too cute. A bit risky as I was driving 70 miles an hour down I-90, but I checked quickly to make sure no cops were around.

Monday, March 3 begins Round 3 of chemotherapy. When I finish up on Wednesday, I will be halfway through chemo. Most of my blood counts have been behaving the right way, except for my last remaining bastion of my immune system, a category of white blood cells called neutrophils. My counts in my neutrophils have dropped below normal putting me into mild neutropenia (low neutrophils). If they don't recover by Monday and have dropped too much further, my chemo will have to be delayed a week. I don't like the sound of that, but then having chemo without an immune system isn't a smart thing to do.

My sister, Inga, will be coming in from Texas to help out. She got it easy on Round 1, which was supposed to be the hardest. Well, since Round 2 hit me like a sledgehammer, I have to admit I'm not really looking forward to treatment. Yes, that was a severe understatement.

I have managed to do a few runs the last couple of weeks. My "long" day was 43 minutes. It did feel long. I have been sticking to around 30 minutes, which seems to be about all I can handle. Maybe as my tumor load continues to decrease and my bone marrow continues to clear of cancer, I'll start to have more energy. Oh yeah, and maybe when I finish chemo at the end of May.

I saw a bunch of friends, familiar and new faces at a massive Team in Training practice this morning. All the hugs, smiles, and catching-up did my heart good! Just what I needed heading into next week.

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.