Medal of Bravery

When I was 6 years old, I received my first medal which I still have. It was a "Medal of Bravery - My Tonsils are Out". In the picture, I'm showing off another medal of bravery. The apparatus which was used for chemotherapy infusions, my port. I'm holding it basically in the position of how it was inserted in me; the large disc was under my skin in my chest and the tubing ran up over my collar bone and into a vein in my neck travelling to just outside my heart. The disc was where a nurse would insert the IV needle for drug delivery. On Monday, December 8 over a year since it was implanted, I had my catheter port removed and none too soon after a scare I had last week (next paragraph). However, the surgeon wouldn't let me keep my "Medal of Bravery - I am a Leukemia Survivor" prize, because he said it was considered a biohazard. Well, I tried to get my Treatment Marathon finisher's medal. At least, I got my finish line photo.

Last Thursday I had a dental appointment for what I thought was going to be a crown fitting. Usually I have to take a mega-dose of antibiotics one hour before a dental appointment, in order to kill the flood of bacteria that are released from dental work. I was out of antibiotics and I also thought, "Oh, doctors over-medicate and I suspect I don't need the antibiotics". Wrong! Instead of a crown fitting, it turns out I had a piece of tooth that had broken off and a little bit of decay that needed to be cleaned up before the filling was put in. No worries, I thought. Fixed, I was on my way. Later that afternoon I started feeling tired and needed a long nap. In the evening, I was wiped out. By the next morning, chills, body aches, and severe fatigue had set in. I knew something was really wrong. I went to the doctor Friday afternoon. He put me on two antibiotics; penicillin and ciprofloxacin. I had an infection from the bacteria released into my mouth which had absorbed into my bloodstream. The risk was that it would go set up on my port and cause serious complications. I got worse before I got better, but the antibiotics took hold by Sunday and I started feeling better in time to have my port removed. Clearly, my immune system still hasn't fully recovered from chemotherapy and I'm still quite vulnerable to infections.

All this said, I'm back to running again, slowly. That is, I have my endurance but not my speed. I've knocked off a couple of marathons this fall and a couple of half marathons. It's hard to explain, but boy does it feel good to be able to run long mileage again. I can honestly say it makes me feel extremely grateful and thrilled to be alive. That is something I don't take for granted!

Happy Holidays,
Wildwood Diva

A Conscious Choice

I am so thrilled to be in remission, that I have actually been able to forget about having leukemia for a bit (there is still .03% cancer in my bone marrow. yet I am considered in remission). I finished chemo in the beginning of June, however, the reality of the devastation of chemotherapy still looms large. I am pleased to have a jawline and svelte neck again, as my tumors have disappeared. Also, my running bras fit better since the golf ball tumors in my armpits are gone. I don't have as much fatigue, even though some days it still feels like I have molasses in my veins. I no longer have to sleep 10-12 hours a night followed by a 2 hour nap during the day. I am 100% better than I was--it is all relative--meaning, I was really sick. That said, I only have 1/3 of my immune system. The chemotherapy wiped out my bone marrow and was extremely hard on some key components of my immune system. So, even though I am in remission, I am still recovering. It could take up to a year for my immune system to bounce back.

I was fortunate to be able to travel to Croatia and Maui recently. When I went to Croatia, my oncologist gave me some ciprofloxacin (it's the serious antibiotic for serious infections--people hoarded it during the anthrax scare) and he told me, "Take this if you get any infection and go to a hospital". Not exactly the "bon voyage" you want to hear heading out on vacation. Well, I did get sick on the way home from Croatia, but was in the States before I needed medical attention (antibiotics for a cold that turned into a sinus infection).

Ok, so what are the real reasons I decided to add to my blog today after such a long hiatus. Well, two reasons, first, I realized people think that I am well with a fully functioning immune system, and second I had a tramatic incident today, which I made a conscious choice to do something about that may have not been so good for my health. On the second matter, to make a long story short, two of my dogs got in a fight today. It turned into a fight to the death battle. My big dog, Mocha, and my cuddly-bug Wiki got into it , with Mocha having the upper hand. Mocha clamped down on Wiki's throat and was suffocating her. I could hear the gurgling from Wiki, as she struggled to breathe. Before I tried to break them apart, I knew I would be putting my own health in jeopardy. Do I do nothing and let Mocha kill Wiki? Or do I step in and try my best to have a positive impact on events around me? I chose to be involved. Even though, I knew breaking the dog fight up might not be good for my health (I got 3 puncture wounds on my right hand, had x-rays and a tetanus shot, now on antibiotics, and need an immune boosting IV infusion to help fight the potential infection), I could never have lived with myself, if I had done nothing. And let me guess, you are right now saying to yourself, "Well, I never would have done that!". So, let me ask you, How often do stand on the sidelines and let things happen? Well, all I can say is---This is the only chance you get at this life! Make choices that make you feel good about being alive. That is what I have chosen to do; Live a full life with no regrets.

And if you're wondering, both dogs and me are fine. Mocha suffered a few bite wounds, but did not do any damage to Wiki. I think I got the worst of the bites, but I will heal.

Burning bright,
Wildwood Diva

My Prize - Complete Remission

I started this Treatment Marathon in November 2007. I finished the last of the medical tests July 2008. I have crossed the finish line exhausted, a bit beat-up in body and mind, but I am thrilled to say I won the prize I was after...more life. I am in Complete Remission!!!!

The final series of tests which included a bone marrow biopsy and CT scans indicated that with the medical criteria used for CLL, I am in Complete Remission. That doesn't mean cancer-free or cured, but it means the force and intensity of the leukemia symptoms and suffering I have endured will be gone. How long? I don't know, but hopefully years. What matters is today. And today, I am in Complete Remission!

In the meantime while I rejoice and pinch myself in disbelief, I have some recovering to do. My immune system was trashed by the chemotherapy. It did what it was supposed to do and killed the cancer cells, but it got a whole lot of healthy cells in the process. I have to be diligent about not getting infections which could make me dangerously ill. It may take anywhere from 6 months to a year for my immune system to recover. I still have to get immune boosting IV infusions to help fight infections until my immune system is restored. I will also have regular blood tests and check-ups with my oncologist to monitor my remission status. I will do my part in continuing to help my body to heal and be strong. And yes of course, there will be many more marathons (running, that is!) in my future.

As I write this last blog entry for hopefully what will be a long, long time, I want to thank everyone for your support and love. I survived and thrived because of your prayers, positive thoughts, hugs and warm embraces, meals, car shuttles, company while I was getting chemotherapy, emails of encouragement, phone calls to check-in, text messages to make me smile, firewood stacking, evites to events that I couldn't attend but made me feel good that I wasn't forgotten, runs with me when I could barely put one foot in front of the other, for caring enough to listen to my struggles with cancer and chemo, swimming my big dog Mocha for her arthritis therapy, funny emails to pick up my spirits, generous gifts, sharing your life stories so I wasn't abandoned to a world of cancer symptoms and chemotherapy side effects, and for being in my life because you are what makes my life worth living and fighting for. Thank you, thank you, thank you.

On to new adventures,
Wildwood Diva

It's Perfect

My oncologist called me today. "I have to talk with you about your Flow Cytometry". I was filled with dread, since I had just had an appointment with him yesterday and he had said it would take several days for the test results. I thought, surely, it couldn't be good news. "It's perfect", he said. "It's perfect". Timidly I asked, "What does that mean?" "It means you have zero cancer in your blood". I was shocked into silence. "It's perfect", he repeated, smiling into the phone. I asked a couple of questions about the bone marrow biopsy I have yet to do. He believes the blood test is more sensitive, but we need to do the bone marrow biopsy to be certain. I asked if I could be happy now about the news. He said that I could start jumping up and down. Again, to quell his disbelief as well as mine, he repeated, "There's zero cancer in your blood. It's perfect."

As I write this I am still in disbelief. I walked around in silence with myself for over an hour when I first got the news, trying to incorporate the hugeness of the test results. Seven years ago almost to the day - July 11, 2001, I was diagnosed with CLL. I have had this dragon breathing down my back, taking pieces of my life away and making me extremely ill the last few years. And now today, I am told that I have zero cancer in my blood. I've lived with knowing that I have an incurable cancer with no possibility of remission. However, today I'm beginning to believe I just won the lottery that matters; the lottery of getting a remission, the lottery of the gift of life. As I sit in silence with my thoughts and feelings still mulling things over, I think I will borrow my doctor's words to describe how I'm feeling about life right now, "It's perfect". And you know, it really is.

Battle Scars

Simply because I've finished chemotherapy doesn't mean everything is easy, back to normal minus the leukemia. Granted I'm early in the recovery process, but even I had to be kicked in the teeth to be reminded that my body is far from normal. A few days ago I thought I'd go for a 30 minute run. Everything was feeling ok, so I thought it would be good to work up a sweat to help detox. Well, about half-way through the run my abdomen started screaming. I had to stop and double over to try and get the pain to stop. I was with a friend so I didn't want to walk all the way back. We ran it in and I paid for it with 48 hours of excruciating pain in my abdomen. The pain is still there, but I'm not having to take handfuls of pain meds anymore to be able to tolerate the pain. Running is off the docket for a bit longer. I don't need to have that experience again.

The chemo drugs beat up my joints, ligaments and tendons causing pain and weakness. For example, I have to focus when I pick up anything to keep my wrists straight. They are so weak that they immediately bend backwards adding to the pain. And I'm not talking heavy things. I'm talking a cup of coffee in my favorite mug.

I didn't lose my hair, but my normally silky hair has the texture of straw. The benefit is that can I actually get my hair to stand up in all kinds of directions without any product and it looks thicker even though it has thinned some from the chemo.

Did you know that some chemotherapy drugs can cause people to be sterile? Well, in women that means menopause. This last round of treatment was what broke the dike and overloaded my system. In addition to having treatment side effects, add onto that hormonal side effects of my body being thrown into immediate menopause. Hot flashes overlaid on top of the chills from the chemo, not fun. I hear a collectal cheer from the women like "Yay, no more periods". Actually, menopause is not a good thing for women, because it causes a woman's body to age faster. So, gals change your view about your monthly cycle. My situation might be a temporary menopause and I'll recover or it might be permanent. So, I've got chemo-brain and off-the-charts PMS. Lovely. Poor Dan, having to deal with me.

I could go on with the battle wounds, but I'm hoping most will go away and not be permanent issues. Besides the physical battle wounds, chemo had an impact on my psyche. I thought having leukemia changed me. It did. But going through the intensity of chemotherapy, changed me. I'm still sorting through things and looking forward to more time to live life to the fullest.

Finished with Chemotherapy

I can gratefully say that I have finished the 6th and final round of chemotherapy. I'll have a series of tests in July and August to determine how well the chemotherapy worked. I'm not whooping it up, because it hasn't sunk in that I'm finished with chemo. I suspect in about 3 weeks when I'd be thinking about the next round, it will hit me that I'm finished. Then I'll start celebrating.

A number of people have said to me, "Wow, it went so fast." Yes, time goes fast. However, for me, chemotherapy did not feel like it went by fast. It was painstakingly slow. The week prior to the next round of chemo, I would start dreading what I had to go through during chemo and the couple weeks after as the chemicals wreaked havoc on my body. So, No, chemotherapy did not go by fast, but Yes, I'm so glad that I'm done.

Prior to my final round of chemo, my oncologist said to me, "I never thought you'd get this far." I didn't ask him what he meant by that. Perhaps, he thought because I was so sick during the first few rounds of chemo, that my body wouldn't tolerate the full 6 cycles. Or maybe, because I started getting increased infections, the treatment might have had to be stopped because my immune system was so beat up. Or maybe, as in what happened to a friend of mine, the chemotherapy actually causes the cancer to start growing faster, and it could have sent me spiralling downward to death. But I suspect the real reason might have been that I'm so ornery that my doctor worried that I might have said, "Enough. I can't tolerate what chemo is doing to my body. No more." Ok, I admit, I may be ornery, but I'm definitely not stupid and I knew I needed all 6 rounds of chemo to have a chance at a remission.

Now I'm in recovery and rebuilding mode. In addition to my immune system being pretty much decimated, I am now out-of-shape from being inactive for 7 months, I have various aches & pains from the drugs, my liver is stressed along with other internal organs, and my fatigue levels are still sky high. So, the way I figure it, as I said in a previous post, "I have today." And today I am Oh so happy to have survived (literally) chemo.

Where Do I Go From Here?

After beginning this process back in November 2007, it is nice to know that I am approaching the 6th and final round of chemotherapy. Not to hurry time, but I'll be glad when it is over.

I'm well from the most recent infection, finishing the antibiotics yesterday. I am scheduled for the final three days of chemo next Wednesday through Friday. I suspect I'll breeze through because I've figured out the anti-nausea meds and there doesn't seem to be much cancer left, so the drugs go right through me without causing alot of physiological response. Dan is here for the final round.

After a battery of tests in July, I'll know how well the chemotherapy worked. I have a good feeling about it. And if running provides any hints, I had a great 5 mile trail run the other night. It actually felt easy and was fun. Yay! If the tests show I'm in remission, it is unknown how long the remission may last. This word used to not be said with this type of leukemia, Chronic Lymphocytic Leukemia, CLL. In fact, in my medical records over the years, different oncologists have written, "Discussed - No possibility of remission". The word choice is "remission" not "cure". Currently, there isn't a cure for CLL using chemotherapy, although a bone marrow transplant using stem cells can sometimes offer a cure. The risk of dying from a bone marrow transplant is quite high, so it is a last ditch option. And yes, someday, I will most likely have to go through that process. If chemotherapy didn't work very well, then I'll be back on the treatment treadmill. Watching and waiting as the cancer grows and I'm so sick that I have to have chemotherapy again. The problem with chemotherapy and cancer is that the cancer is smart. Once it sees chemotherapy drugs it becomes resistant to those drugs and different ones have to be used. This is something I try not to think about, since I'm being treated with the "gold standard" of drugs, meaning this was my best chemotherapy treatment choice. However, I remain hopeful that I will go into a lasting remission that will buy me some time and as more research is done, more options will become available. And yes, I do believe someday that there will be a cure for Chronic Lymphocytic Leukemia.

Deja vu

The countdown has begun to my 6th and final round of chemotherapy. Treatment is scheduled less than 2 weeks away. However, I am sick again. I know this was all my own doing. I was feeling good, so I did too much. Basically, I got out to see people, did a bit of running, and got sick. I currently have a sore throat and fever along with increased fatigue.

Did I say I was frustrated? I have to admit I'm sick of being sick, whether it's from an infection or leukemia symptoms or chemotherapy side effects. You know what's it's like to get the flu and you can't do anything, feel miserable, wonder when you're going to feel good again... Well, imagine that times 5 Years. I have pretty much felt like crap for 5 Years! I've done a good job ignoring most of my symptoms and getting out and doing things by pushing aside pain and making myself have energy, even if the energy wasn't there. However at the moment, I'm tired of being sick.

Ok, enough ranting. I'm looking beyond this last round of chemo to when I find out how well the last six months of chemotherapy have worked. That's the true test. I'll get over this current infection and I am thrilled to say that most of my leukemia symptoms have disappeared. I especially like that almost all of my pain from the leukemia is gone. It's been a long time since I have been free of pain. I'm also looking forward to my immune system rebounding, so I can get out and "do too much" and not get sick!

So now a word to the wise. Time to save up your energy and be forewarned, because the Wildwood Diva will be soon be out-and-about! =)

How to Make Chemotherapy Fun

I sailed through Round 5 without any issues. I'm sitting here scratching my head, thinking did it really happen? The only reason I know it did is that I'm borderline nauseous even with my grocery cart of anti-nausea drugs. Oh yeah, and the fact that I'm sleeping about 16 hours a day. My sister and Dan did all the Rounds with the dirty work which included watching me turn green, cleaning up barf, feeding me if I was able to eat, and wondering if after so many hours sleeping I was still breathing. But this Round was different. I had fun this round because first off, I knew to keep loaded with anti-nausea drugs and second, I had a relay team of help, so I felt like I was in social hour. I got to catch-up with some of my friends which made me happy, even as I was getting chemo plumbed in.

I have to say Day 2 was the most fun for a variety of reasons. As I'm bouncing off the walls from the cafe mocha that Kim bought me, I came down off the ceiling for a moment to let my doctor know how much I appreciate all the care and concern he has given me! He truly is The Best!!! After treatment, Kim and I met up with Steven to pick up some meals he made for me. Oh yeah, why not have another espresso?! We stuck to caffeine even though you see all the wine bottles behind us. Kim got me home in time before I passed out and she would have had to drag me into the house to bed. I slept the rest of the afternoon. Had dinner and slept till morning. I think I have to put this as one of my all time most fun days at chemo. If being happy adds to the healing process, I'd say those chemo drugs got a big boost of happiness help this Round!

Did You Say "Great News!"

Thoughts from Wiki: Did I hear "Great News!"? That's even better than "Do you want a treat?".

I'm embarrassed to say that I was so caught up in when Round 5 of chemotherapy was going to get going, that I forgot to tell you about the great news I received at my oncologist appointment on Monday. It was clearly a case of losing sight of what the real goal is-"Getting Rid of the Leukemia" and not "When is chemotherapy ever going to end?" What a huge thing to lose sight of, but we do that so often in our lives. We get so focused on the going through the motions that we forget why we we're doing what we're doing. We don't even see that we already have what we're working to achieve, if we only pause for a moment and breathe.

Ok, now the great news. Drumroll, please. All my tumors are gone! From physical examination, all my tumors are gone! You know, that sounds soooo good that I think I'll say it again and again, all my tumors are gone! Not to put a damper on the news because I don't want to and I'm not meaning to, but we won't know if the cancer is gone or for sure if the internal tumors are gone until I have all the post-chemotherapy tests in July. But in the meantime, I'm thrilled (what an understatement) that all my tumors are gone!

Floating on Cloud 9,

Wildwood Diva

Round 5 Finally Scheduled

I'll be starting my fifth round of chemotherapy on Thursday, May 8. I'll have the usual 3 days, finishing this round on Saturday. I've still got some lingering flu symptoms, but my doctor is hoping a couple more days of antibiotics will help clear them up. My blood counts looked great, so even with an infection they recovered well from the Round 4 treatment.

I'm thrilled to be moving forward, since it brings me closer to the finish line. I see Round 6 on the horizon with a healing summer shining up behind it.

Round 5 Still in Question

The antibiotics have worked getting rid of the secondary infection that was setting up in my chest and sinuses. I still must have the flu virus hanging around because I have a few symptoms; off-key voice and coughing, although my energy is much better. Yesterday I was thinking I would be good to go for chemotherapy this week, but then I had a rough patch of coughing last night. So, now I'm wondering if chemo will be this week or next? Well, the question will be answered shortly, as I'm scheduled to see my oncologist this afternoon.

My sister took off yesterday to Texas to see her daughters that are in college. Her husband flew in from Indonesia, because my niece is graduating this week. Well, my sister left with the flu I gave her. I told her to tell her family that she brought a little bit of Kit with her and that I was willing to share.

Flu Worsening

My flu is worsening. I spent most of last night trying to stop coughing. I finally propped myself in a seated position and was able to get a bit of sleep. It has moved into my upper chest and sinuses and my throat is really raw. Plus I still sound like a croaking frog when I speak. Too bad I don't have a bit more spunk to use my voice in a few crank calls.

My doctor has ordered some antibiotics to prevent this infection from spiralling out of control. He had tentatively scheduled me to start Round 5 next week, but that will probably not happen. It is a day-to-day evaluation.

Round 5 Postponed

I was scheduled to begin Round 5 of chemotherapy treatment this week. Unfortunately, I picked up a cold on Sunday, currently with a sore throat, laryngitis and body aches. It won't be a good scenario, if it moves into my chest or I start having fevers. As it is, starting another round of chemo when I'm sick would be a recipe for disaster. I talked with my doctor and he has delayed Round 5 for a week. Bummer to be sick. Bummer to have to delay chemo.

My sister flew in from Indonesia to be with me this week while I was in chemo. She is scheduled to leave Sunday. Thus, she will be able to help me out while I'm sick, but I will need help next week while I'm in chemo. I guess the universe is going to force me to accept help from others, besides Dan or my sisters! That's not something I'm good at. If I get well in time for chemo next week I will need help, yes, that's right, need help-May 6 through 9 for sure. Picking me up and driving me to UW, keeping me company during chemo, bringing me home, pet chores, cooking meals, oh my gosh, the list goes on, basically taking care of me. If you're interested, please send me an email to my yahoo address. Please, please, realize this is incredibly hard for me to not only ask for help, but then to accept it. I need to know that I'm not inconviencing you, that I'm not adding to an already overscheduled day. Thanks for your sweet understanding.

The whispering Wildwood Diva

Twice is Too Much

I had an infusion yesterday of intravenous Immunoglobulin (IVIg). It's a collection of human antibodies from 3000 to 10,000 different people. Not the safest product to have being pumped into my body, nasty viruses can slip through the purification process, but IVIg has kept me alive the last 4 years. It helps my body fight off infections, since my immune system hasn't worked too well the last few years.

So, what are you looking at in the picture? It's the port in my chest which they now use to administer chemo, IVIg, anything that is going into my blood. The picture shows it accessed, meaning there is a big needle in it and it is covered with a bandage. The port is raised up about 1/4 to 1/2 inch under my skin. It is easily seen when it's not covered with a bandage. The dark line on the side is the scar from the surgery when they put the port under my skin. (see my blog Dec. 7, '07 for the port surgery story). The big "vein" running from the scar up my chest toward my neck is actually the plastic tubing under my skin. It goes into a vein by my neck and down towards my heart. The port is supposed to be easy to access. No problems, stick once, it's ready, unlike arm IVs which aren't always easy to hit. Well, yesterday, the nurse had to stick my port twice. Ugh. I had put topical lidocaine on it to numb it first, but I still feel the needle going through my chest. The needle must have been defective because the nurse could get blood flow out but couldn't put any liquid in. She messed around with the needle, moving it and trying to reposition it. She said, "I've never had this happen before". I don't know how many times I have heard medical professionals say that about different procedures, drugs, etc. involving me. I'm the anomaly. I wake up during surgery with general anesthesia, but that's another story. Finally, I told her to take the needle out and put another one in. After sticking me a second time, the port IV worked correctly. She said, "You were very brave." I thanked her but thought, "Do I really have a choice? Tell her "No, I'm not having a needle stuck in my chest twice, so I'll skip my lifesaving medicine?" Obviously, not.

I took the picture because over the next 1 1/2 hours my chest hurt. To put it mildly, it doesn't feel good to have a needle stuck into my chest. It doesn't help that my body really doesn't want the port because it has surrounded it with scar tissue making it really, really sensitive. Thus, with the nurse jostling it around, my chest felt bruised. To top it off, I could feel the saline drip going into my chest and it burned because it was cold. I took the picture to remind myself down the road what I went through, yet I did it, and I'm better as a result.

Nothing is Impossible

Like the title says, "Nothing is Impossible." Well, except living forever, but that's not what I'm thinking about. I'm thinking, "Why do we limit ourselves?" It's so easy to talk oneself out of something before even giving it a shot. That's the failure. Never even seeing what we're capable of. Well, in case you're wondering, I'm giving life my best shot.

This week I crossed a new bridge. The thought, "I have today. I have today to live. Not in 6 weeks when I'm done with chemo. Not in July when I have tons of tests run to see if the chemo worked. But yes, I have today". It dawned on me this week. Not that I haven't thought it many times before, but this time it really sunk in. I think I've done a pretty good job the last 7 years living with leukemia and making the most of my life not letting the disease control me. It has taken away many aspects of my life, but I have always adapted to the changes by making them my new normal. Somehow pulling out the Big Guns Chemotherapy, the drug combination that is supposed to be my best chance of buying some more time on this planet, has made me think about a whole series of black holes about the future. I was spending too much time thinking about, "What if....?" So, I crossed the bridge leaving the "What if's" behind. I will live today, making the most of today, because I have today. That is the lesson that leukemia taught me. I realized Regret looks behind living in the past at what "went wrong", Worry looks around wasting energy on what if's that may never happen, but Hope looks forward to making the most of the time we still have. I choose Hope.

So, one of the things I did to make the most of today was to spend the evening with a bunch of friends, celebrating a friend's 40th birthday, but first about 15 of us went for a run. I ran over 5 miles. It is the farthest I've run since my last marathon in November. Was the run easy? No. Did I feel good? No, I had abdominal pain the whole time and had no mojo in my legs. Did it make me happy to run? Yes. Did I think I could run over 5 miles before I started? No, but I took the first steps and told myself that I would run as far as I could and that I wanted to run the whole way. It's so amazing what we are capable of, if we only believe we can.

Burning bright,

Wildwood Diva

Four Down, Two To Go

Wow, Round 4 went quick! I started chemo on Tuesday at 4:30pm and finished up around 9:30pm, sleeping through most of it. Day 2 chemo didn't start until 2pm, so I was able to enjoy some of the warm sunshine that we had. I slept through the three hours of chemo on Thursday and came home to continue sleeping. So, I guess with all the sleeping and pounding my favorite cocktail (anti-emetic, that is) continuously, this round seemed pretty easy. With all the "beauty rest" I'm getting, I figure I'll look 25 when I'm finished with chemo! I feel the wobbliness in my legs and my body still wants to head to bed, but hey, I'll take those feelings over hugging the cold, white porcelain any day.

WooHoo! Only 2 more rounds to go!!!!!!!

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.

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.