Following is a list of side effects I've expereinced after the last chemotherapy infusion. I'm making this list for myself - as a way to remember.
1. Bone pain, bone pain, bone pain.
2. Tearing, watery eyes
3. Runny nose
4. Oral thrush
5. Yeast infection
6. Lost of all taste (How I long to enjoy a simple glass of water!)
7. Sore nails
8. Indigestion
9. Other tummy troubles
10. Phlebitis of the arm at the site of last infusion (a rash/burn along the last vein used)
11. Hot flashes
12. Fatigue/loss of stamina
13. Mood swings
Tuesday, August 19, 2008
Top 5 Fun Things About Being Bald
5. Soooo easy to get ready in the morning.
4. Rain? Humidity? Who gives a damn!
3. Getting to play the part of Sigourney Weaver while acting out the movie "Alien" with your 9 yr. old son.
4. Discovering a mole on your scalp in the shape of Elvis Presley.
And the best part about being bald....
5. Free Air Conditioning!!!
(with apologies to David Letterman)
4. Rain? Humidity? Who gives a damn!
3. Getting to play the part of Sigourney Weaver while acting out the movie "Alien" with your 9 yr. old son.
4. Discovering a mole on your scalp in the shape of Elvis Presley.
And the best part about being bald....
5. Free Air Conditioning!!!
(with apologies to David Letterman)
535
Thursday, August 14, 2008
Pain Free
I am pain free today! Ahhhhh.... it feels so nice. I hope I am never a sufferer of chronic pain - I don't think I would make a very good patient. I hate to be such a complainer - but the bone pain I've been experiencing is awful. You can't get comfortable no matter how you sit. It's a random, roving pain that is sometimes throbbing and sometimes stabbing. It's mostly in my knees, hips and legs, but no bone is immune. I feel stiff and sore like a 90 year old lady with arthritis. The pain meds certainly take the edge off, but then I feel sleepy (and constipated!) I was so frustrated with the pain yesterday morning that I sat in the bath tub and cried! And today it's gone; it left as quickly as it came.
While I was in the midst of all the pain the thought of having one more infusion felt like an overwhelming task that I could not accomplish and left me depressed. So I started thinking about the celebration I would have after recovering from the last chemo. Now we're talking fun! Maybe a BBQ picnic with lots of food. Or maybe a more elegant affair at the house with fancy finger foods and a hired bartender. I may make you wear a funny hat, play silly games or learn a new dance. I have lots of different ideas... but basically I want to have a huge party and invite people from all walks of my life. I won't spell out the details now, but just know that it will happen and you are all invited when it does! It gave me pleasure to think of something fun - of an end goal - and it made the time pass a lot easier. I also found working on a crossword puzzle while waiting for a pain killer to kick in is good distraction!
I made a "practice run" to work today. I'm overwhelmed at all there is to do there. Anyone reading this who works with me - please be patient a little more. It's hard to get re-started. I've been out almost three solid weeks now. My friend Leslie suggested I start by making a list. Number one on the list should be "Make a list." Then after you add four or five more items, you can scratch off number one on your list! Immediate accomplishment! Think I'll try it!
Okay - better get to that list. People are waiting... Just wanted everyone to know the pain is gone and I am working on rebuilding my strength and stamina.
Just ONE MORE TO GO. I can do this!
While I was in the midst of all the pain the thought of having one more infusion felt like an overwhelming task that I could not accomplish and left me depressed. So I started thinking about the celebration I would have after recovering from the last chemo. Now we're talking fun! Maybe a BBQ picnic with lots of food. Or maybe a more elegant affair at the house with fancy finger foods and a hired bartender. I may make you wear a funny hat, play silly games or learn a new dance. I have lots of different ideas... but basically I want to have a huge party and invite people from all walks of my life. I won't spell out the details now, but just know that it will happen and you are all invited when it does! It gave me pleasure to think of something fun - of an end goal - and it made the time pass a lot easier. I also found working on a crossword puzzle while waiting for a pain killer to kick in is good distraction!
I made a "practice run" to work today. I'm overwhelmed at all there is to do there. Anyone reading this who works with me - please be patient a little more. It's hard to get re-started. I've been out almost three solid weeks now. My friend Leslie suggested I start by making a list. Number one on the list should be "Make a list." Then after you add four or five more items, you can scratch off number one on your list! Immediate accomplishment! Think I'll try it!
Okay - better get to that list. People are waiting... Just wanted everyone to know the pain is gone and I am working on rebuilding my strength and stamina.
Just ONE MORE TO GO. I can do this!
445
Monday, August 11, 2008
Hanging On
Hanging on and still trying to recover from chemo #5. The great news is NO FEVER. Every bone in my body hurts and I have no energy - but as long as the fever stays away I can tolerate the rest. Thank goodness for the percocet - it dulls the pain and allows me to relax.
Hoping I'll be on my feet in another day or two.
Hoping I'll be on my feet in another day or two.
Wednesday, August 6, 2008
More Details Than You Ever Wanted!
I saw my doctor yesterday regarding my continuing treatment plan. We will never know exactly what caused my fever. It was either a reaction to the chemo drug, Taxotere (a highly unusual response), a virus (which seems unlikely for 8 days and that occurred before my white count ever dropped), or a reaction to the Nuelasta shot - which helps to rebuild your white count after it drops from the chemo.
The doctor suggested the following options listed here in order of her preference:
1. Do taxotre again without the nuelasta shot. This leaves me with a 1 in 3 chance of winding up neutrapenic (low white count) and thereby vulnerable to infection…. And infection would put me in the hospital on iv antibiotics again and be potentially life threatening.I have agonized over this decision the last few days and have not been able to concentrate on work. (I am performing so badly at my job right now. I feel terrible about it.) I have been really emotional about the decision making and I keep tearing up every time I try to talk about it to someone. It's kinda hard to have a productive conversation when you are crying.....
2. Do taxotere again and instead of the nuelasta, I would take nuepogen shots daily for 10 days. Nuepogen is the short acting version of nuelasta. So if I start to have a bad response again, we could stop the drug and it would be out of my system in 24 hours. The down side - daily injections in my tummy:(
3. Go back to drug #1 which we know I can tolerate well. This option is about 2-3% less efficacious as option one, but has less dangerous (and more tolerable) side effects.
4. Quit. She says 4 sessions (which I’ve had) is the minimum standard. Less than 4 is not efficacious, 6 sessions is more efficacious - by maybe 3-4%.
So... stopping is not an option. Yes - days out of the hospital I was frustrated and tired and said I was ready to quit. I have some perspective now and know that I want to keep going. Yet - I HATE the idea of winding up sick in the hospital again. I was miserable! On the other hand, I don't want to have a recurrence 3 years down the road and live with the regret of not having tried the most effective treatment because I was afraid of 10 days of fever, bone pain and a trip to the hospital. Hmmmm.... 10 days of illness vs. years of life on earth. The answer is becoming clearer now.
I finally pulled it together this afternoon and have decided on option #2 - Taxotere with the daily nuepogen shots. I want to know that I did everything that I could to prevent a recurrence. I want to pursue the most effective and aggressive treatment that has the best statistical outcome.
To do Taxotere without the Nuelasta comes with a risk of life threatening infections that I'm not willing to chance. To do it with the Nuepogen shots comes with some additional pain and hassle and still the possibility of fever and bone pain - but it is not life threatening and allows me the option to stop if my blood counts are okay and the pain is too bad. I will still have to play the game of checking blood counts and cultures to make sure the fever is not indicative of an infection. I could very well end up in the hospital on IV antibiotics again if the fever doesn't abate quickly. But overall it feels like the safest way to reach my goal.
God I hate making decisions like this!
So the infusion is Thursday morning at 10:00 a.m. Ben will have to get instructions on how to give me the shots. At least I can do them at home vs. a daily trip to the doctor. I also got daily shots in the stomach while I was in the hospital and they didn't hurt. It just sounds awful because I think we all grew up with the horror stories about what would happen to you if you were bit by a dog with rabies! Our parents used the threat of 10 days of stomach shots to keep us away from stray mutts! Am I right? Although the shots don't hurt -they leave one heck of a dark black bruise. I will have a very colorful stomach!
So wish me luck. Not sure what the next week will bring or when I will feel like posting again. Please send positive thoughts, or prayers, or do a voodoo dance that will keep me out of the hospital this time. I can take some pain and discomfort - just don't want to be incarcerated and tied to an IV pole again!
As always - I'll talk to you from the other side of this treatment.
274
Friday, August 1, 2008
A Hospital Is No Place To Be Sick
I am still feeling good and sooooooo glad to be out of the hospital. I’ve halfway lost my desire to tell you all the horrors of my hospital stay – I mostly want to forget all about it! But I will touch on a few disturbing highlights for you.
My infusion was on a Friday. I felt completely fine when it was over – absolutely no nausea! Hurray! I had some severe indigestion late that night, but I was fine again on Saturday morning. But come Sunday, I felt as if I’d been hit by a truck. I had no energy and I started feeling uncomfortable in my bones. By Monday night, I realized I had a slight fever – maybe 100 degrees. Tuesday was worse; the fever hit 101 and I was miserable. My bones ached like crazy. Went to the doctor for a blood work up and everything was normal. Wednesday – more of the same. Saw the doctor again and she prescribed antibiotics. Thursday – fever is still present and I am crawling out of my skin with bone pain. The doctor decides it’s time to admit me to the hospital. I am to start off at the infusion center receiving IV antibiotics while they try to get me a room in the hospital. They are afraid I have some kind of infection.
Things were going pretty smooth in the infusion center, until suddenly I start to feel dizzy and warm. A nurse from across the room sees I’m feeling uncomfortable and comes to check on me. “Uh-oh,” she says, “you’re having a Red Man reaction.” Apparently my face was turning bright red and I felt like it was burning. All the nurses gathered around to view the novelty of my “red man” flush. They quickly pushed some Benadryl into my IV which caused me to get even more dizzy and light-headed. As soon as the infusion was done, I stood up to go to the bathroom. As soon as I got there, I knew I was going to be sick. Yep – puked my guts up. It was horrible. Please explain how I can get through 4 chemo treatments without puking, yet some simple antibiotics and Benadryl make me hurl. Geez!
The hospital is at capacity and they don’t have a room for me. Rather than wait around for hours, I chose to go home. I was feeling pretty miserable and there was more puking… I’m not really sure why. I still had the fever and bone pain. I had a hard time sleeping and somewhere around 2:00 a.m. I finally collapsed from exhaustion.
We return to the hospital Friday morning to check in. I am rested and feel a little better. They check me into a room and the nurse spends the next HOUR asking me the most inane set of questions. Do I have transportation home? Do I have air conditioning, do I have the means to buy proper nutrition, who does the grocery shopping in my home? Please! In front of my husband, she asks me if anyone makes me feel unsafe in my home. My answer – “Sorry – I can’t talk about that right now.” How would you like for the staff to address you while here? “Your Royal Highness would be fine.” What foods do you dislike? “Collard greens – I hate collard greens.” Guess what was on the first lunch plate they brought me? Collard greens!!! Why are they asking me all these questions!! Start the treatment already. I’m sick!
The first bag of antibiotics goes smoothly. The nurse says she’s leaving for lunch and will be back at 1:00 to hang the second bag. The second bag is the antibiotic that gave me Red Man flush in the infusion center. They told me next time I should slow down the drip rate from one hour to two hours. The nurse notes this instruction and leaves.
When she returns, she has the antibiotics in one hand and a blood draw kit in the other. I can just tell by her body language that she is feeling uncomfortable about drawing my blood. Sure enough, after 45 minutes of prep time, her stick failed and she had to get someone else to try. Argh. After 30 more minutes she returns with someone else who is able to draw blood on the first try. Good. That part is done. I now drift off to sleep. I wake up and watch some tv. Around 5:00, I look at my bedside table and notice that the bag of antibiotics is sitting there – she never hung it up!! For heavens sake – the whole reason I’m here is for antibiotics. It’s 5:00 and I haven’t even had one full dose of the prescribed treatment! But there’s more… After the nurse hangs the bag and leaves, Ben notices that the IV pump is set to administer the dose in one hour – not two as requested! Thank goodness he was there and knew how to read the machine or I would have been red and puking again!
The whole stay was full of little things like that. Because it was the weekend, I saw a different person every day. I never really knew who was in charge of my treatment plan. It was frustrating. One night, they came at 8:30 p.m. to take me for a CT scan. No one had told me a CT scan had been ordered or why. I refused to go until they had a doctor call me and explain what the test was about and why I needed it.
Every day, my white blood count continued to rise above normal levels. This rise is a signal of infection somewhere in the body – yet I didn’t have any symptoms other than the fever. All tests and cultures came back negative. By Sunday, I was fever free. Hallelujah – 7 days of fever was enough for me.
On Monday, the white blood count rose again but my temperature was normal. What was the source of this mysterious infection? Finally, a nurse practitioner came in and asked me if I’d had a Nuelasta shot with my last chemo. I did. “Oh – then that explains your elevated blood count,” he said. Some people apparently have a bad reaction to the shot that is meant to help rebuild your white blood cells after chemo. Some people can have a flu-like reaction. Since we couldn’t find an infection, it seems likely that the fever, bone pain and elevated white count are related to the Neulasta. But who can know for sure???
A second nurse-practitioner, who had never seen me before, completed the discharge papers to send me home. I know it sounds insane, but it's true.
The question now – what’s next? I sure as hell don’t want to go through all that again. Was it really the Nuelasta? Was it the chemo drug (taxotere)? Was it an infection? Can I take taxotere without the Nuelasta? If I can’t tolerate this chemo drug, then what? Do we go back to the first drug? What if I quit now? Have we gained anything from the four sessions that I’ve completed? I have a lot of questions. And it’s already time for another infusion next week. Ugh.
No. I don't want to do this any more. You took a fairly healthy young woman and made her really sick. This is starting to go outside my boundaries of acceptable risk. And yet, who wants to have cancer 5 years down the road and regret that you didn't finish the treatment. Would two more rounds mean the difference between life and death? This is heavy stuff.
Did I mention that my hair is falling out again? This time I think the eyebrows and eyelashes are coming out. Bummer.
Hopefully I will get some answers from my doctor next week. I definitely have some tough decisions to make in the next few days. All I know for sure - I feel great now and I'd like to keep it that way!!!
My infusion was on a Friday. I felt completely fine when it was over – absolutely no nausea! Hurray! I had some severe indigestion late that night, but I was fine again on Saturday morning. But come Sunday, I felt as if I’d been hit by a truck. I had no energy and I started feeling uncomfortable in my bones. By Monday night, I realized I had a slight fever – maybe 100 degrees. Tuesday was worse; the fever hit 101 and I was miserable. My bones ached like crazy. Went to the doctor for a blood work up and everything was normal. Wednesday – more of the same. Saw the doctor again and she prescribed antibiotics. Thursday – fever is still present and I am crawling out of my skin with bone pain. The doctor decides it’s time to admit me to the hospital. I am to start off at the infusion center receiving IV antibiotics while they try to get me a room in the hospital. They are afraid I have some kind of infection.
Things were going pretty smooth in the infusion center, until suddenly I start to feel dizzy and warm. A nurse from across the room sees I’m feeling uncomfortable and comes to check on me. “Uh-oh,” she says, “you’re having a Red Man reaction.” Apparently my face was turning bright red and I felt like it was burning. All the nurses gathered around to view the novelty of my “red man” flush. They quickly pushed some Benadryl into my IV which caused me to get even more dizzy and light-headed. As soon as the infusion was done, I stood up to go to the bathroom. As soon as I got there, I knew I was going to be sick. Yep – puked my guts up. It was horrible. Please explain how I can get through 4 chemo treatments without puking, yet some simple antibiotics and Benadryl make me hurl. Geez!
The hospital is at capacity and they don’t have a room for me. Rather than wait around for hours, I chose to go home. I was feeling pretty miserable and there was more puking… I’m not really sure why. I still had the fever and bone pain. I had a hard time sleeping and somewhere around 2:00 a.m. I finally collapsed from exhaustion.
We return to the hospital Friday morning to check in. I am rested and feel a little better. They check me into a room and the nurse spends the next HOUR asking me the most inane set of questions. Do I have transportation home? Do I have air conditioning, do I have the means to buy proper nutrition, who does the grocery shopping in my home? Please! In front of my husband, she asks me if anyone makes me feel unsafe in my home. My answer – “Sorry – I can’t talk about that right now.” How would you like for the staff to address you while here? “Your Royal Highness would be fine.” What foods do you dislike? “Collard greens – I hate collard greens.” Guess what was on the first lunch plate they brought me? Collard greens!!! Why are they asking me all these questions!! Start the treatment already. I’m sick!
The first bag of antibiotics goes smoothly. The nurse says she’s leaving for lunch and will be back at 1:00 to hang the second bag. The second bag is the antibiotic that gave me Red Man flush in the infusion center. They told me next time I should slow down the drip rate from one hour to two hours. The nurse notes this instruction and leaves.
When she returns, she has the antibiotics in one hand and a blood draw kit in the other. I can just tell by her body language that she is feeling uncomfortable about drawing my blood. Sure enough, after 45 minutes of prep time, her stick failed and she had to get someone else to try. Argh. After 30 more minutes she returns with someone else who is able to draw blood on the first try. Good. That part is done. I now drift off to sleep. I wake up and watch some tv. Around 5:00, I look at my bedside table and notice that the bag of antibiotics is sitting there – she never hung it up!! For heavens sake – the whole reason I’m here is for antibiotics. It’s 5:00 and I haven’t even had one full dose of the prescribed treatment! But there’s more… After the nurse hangs the bag and leaves, Ben notices that the IV pump is set to administer the dose in one hour – not two as requested! Thank goodness he was there and knew how to read the machine or I would have been red and puking again!
The whole stay was full of little things like that. Because it was the weekend, I saw a different person every day. I never really knew who was in charge of my treatment plan. It was frustrating. One night, they came at 8:30 p.m. to take me for a CT scan. No one had told me a CT scan had been ordered or why. I refused to go until they had a doctor call me and explain what the test was about and why I needed it.
Every day, my white blood count continued to rise above normal levels. This rise is a signal of infection somewhere in the body – yet I didn’t have any symptoms other than the fever. All tests and cultures came back negative. By Sunday, I was fever free. Hallelujah – 7 days of fever was enough for me.
On Monday, the white blood count rose again but my temperature was normal. What was the source of this mysterious infection? Finally, a nurse practitioner came in and asked me if I’d had a Nuelasta shot with my last chemo. I did. “Oh – then that explains your elevated blood count,” he said. Some people apparently have a bad reaction to the shot that is meant to help rebuild your white blood cells after chemo. Some people can have a flu-like reaction. Since we couldn’t find an infection, it seems likely that the fever, bone pain and elevated white count are related to the Neulasta. But who can know for sure???
A second nurse-practitioner, who had never seen me before, completed the discharge papers to send me home. I know it sounds insane, but it's true.
The question now – what’s next? I sure as hell don’t want to go through all that again. Was it really the Nuelasta? Was it the chemo drug (taxotere)? Was it an infection? Can I take taxotere without the Nuelasta? If I can’t tolerate this chemo drug, then what? Do we go back to the first drug? What if I quit now? Have we gained anything from the four sessions that I’ve completed? I have a lot of questions. And it’s already time for another infusion next week. Ugh.
No. I don't want to do this any more. You took a fairly healthy young woman and made her really sick. This is starting to go outside my boundaries of acceptable risk. And yet, who wants to have cancer 5 years down the road and regret that you didn't finish the treatment. Would two more rounds mean the difference between life and death? This is heavy stuff.
Did I mention that my hair is falling out again? This time I think the eyebrows and eyelashes are coming out. Bummer.
Hopefully I will get some answers from my doctor next week. I definitely have some tough decisions to make in the next few days. All I know for sure - I feel great now and I'd like to keep it that way!!!
190
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