I have been on Maintenance chemo since October 2013. What's maintenance chemo? Well, for me, with my specific leukemia, I take a variety of pills everyday, including the big three: mercaptapurine, methotrexate, and ATRA (tretenoin). I also take a few other things, but those are to combat some of the side effects of the big three.
Yesterday, I was told by one of my NPs that I could stop the methotrexate and mercap. I also will stop my ATRA pills on Sunday, which is awesome! I am so happy to get my body back into shape.
I say back into shape for a few reasons. Its very hard to lose weight on these meds. I have steadily gained weight during this past year, and now its almost over. I've gone to a podiatrist to treat plantar fasciitis and overpronation due to rapid weight gain/loss and balance issues from being neutropenic so many times over the past 2 years. I wake up nauseated every morning around 4 am. Some days I am not hungry at all and other days I can't stop eating. Oh, and the headaches are awful. So, yes, I can't wait to get my body back. I want my immune system and my blood to normalize. I want my weight to normalize. I want my muscles to come back full force (just in time for the apocalypse).
Its very exciting.
And in one week, I will be at the hospital getting yet another bone marrow biopsy. If this is clean, I will be in survivorship officially!
Tuesday, November 11, 2014
Sunday, November 2, 2014
Research IT!
Yes, the IT is all caps-- if you have a problem, stop reading right now. I use all caps sometimes.
Lol, that was a remark geared to someone that thought a comment I left on a support group was rude because I capped a few words, not even in order. I put all caps on a few words (separated by other words) in a comment in regards to chemotherapy. I was trying to highlight some terminology, and it was taken as I was being rude and "yelling". I don't yell in all caps.
I elongate when I really am mad...UUUGGGHHHH!!! (and use exclamation marks!)
I guess this rant is more about the importance of research. Do you have an illness, like cancer? Maybe even leukemia or APL? Here's the thing: Please, for the love of yourself and your life, please oh please research your illness or disease.
Its one thing to join a support group on facebook or on a cancer website, but its another to take what another patient or family member to another patient says as truth. And, from what university did they get their medical degree from? Exactly.
I've seen people asking a support group what C-diff is. ASK your DOCTOR! (Yep, did it on purpose there.) In case you don't know what C-diff is, you have not experienced the outbreak that is the most disgusting side effect to chemo or suppressed immune systems have the pleasure and the curse to have. Yes, look it up. Google and Wikipedia are great.
When someone is told they have cancer...many thoughts go through their heads. For me, I was told in a very cold way and then rushed in an ambulance to another hospital. I was lucky enough to have a nurse explain to me what was happening. The following day, I met lots of doctors. I was bombarded with tons of information and questions and it was very dizzying. By the time my boyfriend brought me my laptop, I had printouts, but I also still wanted to look things up on the interweb myself. I wanted to see other stories, hope for happy endings, read about other experiences like what I was about to embark. I wanted answers and confirmations.
Guess what? I got them. I agreed with everything my doctors told me. I questioned (and still ask questions) when I don't understand something fully. Maybe my inner nerd that loves science and biology really got a chance to shine through and help ease my nerves, but honestly, I can't imagine not asking questions and just saying OKAY (totally not yelling). I also can't imagine asking someone who I don't even know what they do for a living what C. diff is--- that's what the hospital staff is for. That's what your doctor is for. And, when you have a fever and don't feel well, well they do want to know. Do your meds make you puke? Tell them. Don't tell another patient...they can't do anything about that. Tell the magicians who are trying to save your life, because the price of magic is plenty, and some of it isn't necessary. Does Compazine make you feel funny? Tell your oncologist. They can easily write a script for Zofran if you aren't allergic.
Don't rely on others for medical advice-- rely on them for moral support.
I know its been awhile since I posted. I should give an update, but I really needed to get this out.
Thank you.
xoxo
lisa
Lol, that was a remark geared to someone that thought a comment I left on a support group was rude because I capped a few words, not even in order. I put all caps on a few words (separated by other words) in a comment in regards to chemotherapy. I was trying to highlight some terminology, and it was taken as I was being rude and "yelling". I don't yell in all caps.
I elongate when I really am mad...UUUGGGHHHH!!! (and use exclamation marks!)
I guess this rant is more about the importance of research. Do you have an illness, like cancer? Maybe even leukemia or APL? Here's the thing: Please, for the love of yourself and your life, please oh please research your illness or disease.
Its one thing to join a support group on facebook or on a cancer website, but its another to take what another patient or family member to another patient says as truth. And, from what university did they get their medical degree from? Exactly.
I've seen people asking a support group what C-diff is. ASK your DOCTOR! (Yep, did it on purpose there.) In case you don't know what C-diff is, you have not experienced the outbreak that is the most disgusting side effect to chemo or suppressed immune systems have the pleasure and the curse to have. Yes, look it up. Google and Wikipedia are great.
When someone is told they have cancer...many thoughts go through their heads. For me, I was told in a very cold way and then rushed in an ambulance to another hospital. I was lucky enough to have a nurse explain to me what was happening. The following day, I met lots of doctors. I was bombarded with tons of information and questions and it was very dizzying. By the time my boyfriend brought me my laptop, I had printouts, but I also still wanted to look things up on the interweb myself. I wanted to see other stories, hope for happy endings, read about other experiences like what I was about to embark. I wanted answers and confirmations.
Guess what? I got them. I agreed with everything my doctors told me. I questioned (and still ask questions) when I don't understand something fully. Maybe my inner nerd that loves science and biology really got a chance to shine through and help ease my nerves, but honestly, I can't imagine not asking questions and just saying OKAY (totally not yelling). I also can't imagine asking someone who I don't even know what they do for a living what C. diff is--- that's what the hospital staff is for. That's what your doctor is for. And, when you have a fever and don't feel well, well they do want to know. Do your meds make you puke? Tell them. Don't tell another patient...they can't do anything about that. Tell the magicians who are trying to save your life, because the price of magic is plenty, and some of it isn't necessary. Does Compazine make you feel funny? Tell your oncologist. They can easily write a script for Zofran if you aren't allergic.
Don't rely on others for medical advice-- rely on them for moral support.
I know its been awhile since I posted. I should give an update, but I really needed to get this out.
Thank you.
xoxo
lisa
Wednesday, September 17, 2014
Update on me
Yesterday, I had my checkup with my main oncologist. This is my final month of maintenance chemo! I finish up mid October and am so excited! Finally, my body will have a chance after 18 months to adjust to no meds. Well, I still will have to take my b12 and folic acid, but hey, I can do that. That's nothing! I'll take a month off meds and chemo and then have yet another bone marrow biopsy. That test will be the big kicker--- let the docs know how my body is doing, and if there is any sign of the genes switching back to cancer or if I'm doing well!
Oh my gosh, I'm so excited. I'm looking forward to losing some of this weight, traveling again, and regaining energy. I know I have a lot of things I want and I know they will take time, but its been a long time coming.
Oh my gosh, I'm so excited. I'm looking forward to losing some of this weight, traveling again, and regaining energy. I know I have a lot of things I want and I know they will take time, but its been a long time coming.
Monday, August 25, 2014
Gift Bags: The Start of Lisa's Cancer Kickers!
I am taking a cue from Emma Rose, A Patient Helping Patients and my dear friend, Abby, and looking to brighten the day of some leukemia patients at Rush University in Chicago.
I am being treated at Rush. Although I am (hopefully) almost done with my maintenance chemo, I want to help others that are dealing with what I dealt with last year...staying at the hospital for weeks. Leukemia and other blood cancer patients tend to have longer hospital stays, because their cancers are treated differently. They want to wipe out all your immune system and make you weak, nauseous, and tired. Wait, that sounds awful! Well, it is and it isn't. Its good to get rid of all those bad cancer cells, and its even better to have 24 hour care. It just sucks being in lock down and feeling awful because your body isn't really making blood (your life force).
So, when I was at Rush getting my induction (first) chemo, I was there for 5 weeks. My friend, Abby, mailed me a box filled with goodies. I got a ton of little things that made me smile, laugh, and came in handy. I think its time to pay it forward and surprise some people that are having a rough time have a bit of a better day.
Would you like to help? I am looking for small things (new, unwrapped) that can help a cancer patient and maybe give them something to do.
Suggested items I need:
I am being treated at Rush. Although I am (hopefully) almost done with my maintenance chemo, I want to help others that are dealing with what I dealt with last year...staying at the hospital for weeks. Leukemia and other blood cancer patients tend to have longer hospital stays, because their cancers are treated differently. They want to wipe out all your immune system and make you weak, nauseous, and tired. Wait, that sounds awful! Well, it is and it isn't. Its good to get rid of all those bad cancer cells, and its even better to have 24 hour care. It just sucks being in lock down and feeling awful because your body isn't really making blood (your life force).
So, when I was at Rush getting my induction (first) chemo, I was there for 5 weeks. My friend, Abby, mailed me a box filled with goodies. I got a ton of little things that made me smile, laugh, and came in handy. I think its time to pay it forward and surprise some people that are having a rough time have a bit of a better day.
Would you like to help? I am looking for small things (new, unwrapped) that can help a cancer patient and maybe give them something to do.
Suggested items I need:
- Kleenex or Puffs cubes (the hospital has tissues, but they are hard and scratchy)
- Lip Balms, like Aquaphor and Neutrogena, for very dry and sensitive chapped lips
- puzzle books, like crosswords, Sudoku, word finds
- iTunes and amazon (or kindle) gift cards. $5-$20 range. Patients can use to download games, apps and books onto their phone or tablets.
- yarn for crochet and knitting
- gum
- hard candies (lemon heads are the best)
- soft travel sized fleece blankets
- memo books, pens.
- hand weights (to keep the muscles from atrophying, like 1-2 lb.)
- inspirational books, like chicken soup for the soul
- ear buds for listening to music on their phones/tablets/laptops
- long distance phone cards, so they can use the landlines and not use up all their cell minutes
- chocolate bars-- plain milk chocolate. Chocolate anything is a commodity in the hospital.
- magazines (entertainment, travel, health, fishing, sports, news)
- little knick knacks that motivate or inspire
Friday, June 20, 2014
Can't Sleep...
This week, I was put on Vitamin B12 supplements by my doctor after noticing a trend in my bloodwork the past few months.
It was like someone flipped a switch.
My energy levels improved the day I took my first B12! I had been going down for a 2-3 hour nap every afternoon, and now I'm at the point where I am tired, but I can't sleep. My mind has so much energy, its making me nervous.
I guess I am concerned, tired, bored, and have lots of ideas...and can't sleep. 1 am and I am up, dreading the fact that I know how tired I will be tomorrow and with all the stuff I have on my list to do.
In other news, my hair is coming back and its curly. My hair was straight as a rail before my cancer--- isn't that wild?
I'm getting hot flashes again. That sucks.
Wow this seems like a bit of a negative post-- sorry about that, can you tell I'm tired??
Have a good night!
It was like someone flipped a switch.
My energy levels improved the day I took my first B12! I had been going down for a 2-3 hour nap every afternoon, and now I'm at the point where I am tired, but I can't sleep. My mind has so much energy, its making me nervous.
I guess I am concerned, tired, bored, and have lots of ideas...and can't sleep. 1 am and I am up, dreading the fact that I know how tired I will be tomorrow and with all the stuff I have on my list to do.
In other news, my hair is coming back and its curly. My hair was straight as a rail before my cancer--- isn't that wild?
I'm getting hot flashes again. That sucks.
Wow this seems like a bit of a negative post-- sorry about that, can you tell I'm tired??
Have a good night!
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