Maybe it's the sunshine, or the fact that I sat allll morning outside while my kiddos ran around, but today I feel great! I have energy?! But I have also been NON-STOP eating! I will admit, I do have the occasional nausea, but today it has lingered with me throughout the day. It's nothing too horrible, I'm no where close to actually losing it, but I've been eating and eating and eating to keep my mind off of it. So maybe it's the 5000 calories that I have consumed today that is keeping me going. Either way, I am super stoked to say I worked at school, then at Blush, and now I'm getting ready to head out for the evening! The past few days have been pretty rough with low energy, so hooray for getting use to this drug! Although I still haven't quite gotten use to this "vertigo" feeling when the walls in my bedroom suddenly start floating....
I had my blood tests yesterday (just to check and make sure all my counts were healthy) and I haven't heard anything from the doc so that means all is well! Yay! When I went to the lab one of the nurses asked me what I was doing back so soon and I told her to get excited because she was going to be seeing me weekly for the next several weeks. She laughed and made a comment that it's hard to believe that I'm "sick". I guess it's not everyday that they see young, healthy-looking patients... especially with a head full of hair!
I'm off to go stash crackers in my clutch for the evening and enjoy the weekend!
Friday, April 29
Monday, April 25
Day 4 on the pill.... I'm drunk
Ok, I'm not really drunk. I experience sensations sporadically throughout the day that include a spinning room and a release from gravity. It's not painful by any means, and I'm starting to get use to it (although tonight I was in my car at a stop light and about freaked out myself, and the cars around me, when I thought I was moving even though I had my foot slammed on the break).
Other than that, I've just had to increase the R&R in my life. I was in bed by 10pm Friday, Saturday, and Sunday from pure exhaustion. Yup, I feel pretty lame. But I will admit, Saturday was the roughest day of them all; it was my first real feel of the effects. By 10am I was ready for a nap! But I've been good and listening to my body ever since so it has become a bit easier. It's not easy for me to slow down, but slow down I must.
It's still the beginning and my body is not quite done trying to fight off this undesired poison. I think once my body gives in, I will be more comfortable... and hopefully less spacey!
Other than that, I've just had to increase the R&R in my life. I was in bed by 10pm Friday, Saturday, and Sunday from pure exhaustion. Yup, I feel pretty lame. But I will admit, Saturday was the roughest day of them all; it was my first real feel of the effects. By 10am I was ready for a nap! But I've been good and listening to my body ever since so it has become a bit easier. It's not easy for me to slow down, but slow down I must.
It's still the beginning and my body is not quite done trying to fight off this undesired poison. I think once my body gives in, I will be more comfortable... and hopefully less spacey!
Friday, April 22
Day 1: Chemo Pill
I still have my hair and I have yet to feel the urge to run to a bathroom and praise the toilet. Looks like the doc was right! I took my first pill last night and so far feel zero difference. I think I'm going to like this :)
Thursday, April 21
Finally the facts! And a little bit of fun...
First with the facts...
The drug I am taking is called ledimitamide. It is a clinical trial, not yet approved by the FDA. But it has been around for years and my doctor is confident that it is safe. She is not 100% confident that it will work, but she already has a few other trials lined up just in case.
I will be taking one pill daily. Easy peasy! I should have very few side effects, with fatigue being the most common (no biggie, I like to sleep!). Like I said before, there will not be nausea or hair loss (thank goodness!).
I will have blood work done each week for the first month to keep an eye on my blood counts. On more extreme chemo drugs (like I was on in years past) it is very common for white blood cells to drop (the ones that keep you healthy) so they watch that closely. It was very common for me to miss chemo treatments the first time around because my counts were low. This resulted in them trying to pump my counts up by giving me steroid shots (hence the major weight gain!). They do not expect that to occur this time around (Horray!) and I should be keeping a pretty healthy immune system.
I will see the doctor every 4 weeks on the pill. My doctor's plan is for me to take the pill for 2 months and then we will rescan from there. If the tumors show growth we will scratch the pills and go to plan B. If the tumors show zero growth but do not appear to be shrinking either, then I will continue to stay on the pill. Some patients have been on the pill for years and years just as maintenance so their tumors do not grow. Pretty cool and kinda annoying at the same time. Now the awesome part - the drug company will be picking up the bill on most of this (HOLLA!).
This all seems pretty simple, almost too simple. But that's pretty much all that's to it... not too bad!
Now onto yesterday's events.... Siteman Cancer Center with the D Girls....
Instead of random on-online cross words printed off, my sister busted out an actual book of cross word puzzles. While I was having an EKG completed, she completed the puzzle: The word BUTCHER in 26 different languages.... who exactly did you have in mind when you made this purchase, Kristin Jane?! After the EKG it was time for the bone marrow biopsy. Now I have had this performed twice before so I knew what I was getting myself into... GOOD DRUGS! The nurse was a hoot to begin with so it made things much easier. Krissy reassures me that both nurses were not making fun of me, but I do recall a lot of laughing on their end. Then again, I accused them of having a dance party in my room when a male doctor came in (who I apparently explained my infertility history to - OMG I was a mess). All I can say is THANK GOODNESS I do not remember much at all!
The Highlight of the day
If you are at all familiar with Barnes Hospital, they have a television station devoted to a fish tank. Yes, a fish tank. Fish swim around and old school soft rock songs are played. This station was introduced to my sister and I when we would visit my mother in the hospital 20+ years ago. For the 9 years she was in and out of the hospital she would always turn the fish on for us to watch. It was calming and nice to have in the background. This station is a Barnes staple and a favorite for my sister and I still to this day. In my hospital room where my bone marrow biopsy was going to be performed, I had a television so the first item of business was to find the fish. As I laid in bed making fun of Krissy in her ity-bity chair finding the word BUTCHER in 26 different languages, we were interrupted by my mom's favorite song playing on the tv with the fish. Immediately all bickering stopped and we found ourselves belting out Elton John. It was comforting to know that she was there with us.
The drug I am taking is called ledimitamide. It is a clinical trial, not yet approved by the FDA. But it has been around for years and my doctor is confident that it is safe. She is not 100% confident that it will work, but she already has a few other trials lined up just in case.
I will be taking one pill daily. Easy peasy! I should have very few side effects, with fatigue being the most common (no biggie, I like to sleep!). Like I said before, there will not be nausea or hair loss (thank goodness!).
I will have blood work done each week for the first month to keep an eye on my blood counts. On more extreme chemo drugs (like I was on in years past) it is very common for white blood cells to drop (the ones that keep you healthy) so they watch that closely. It was very common for me to miss chemo treatments the first time around because my counts were low. This resulted in them trying to pump my counts up by giving me steroid shots (hence the major weight gain!). They do not expect that to occur this time around (Horray!) and I should be keeping a pretty healthy immune system.
I will see the doctor every 4 weeks on the pill. My doctor's plan is for me to take the pill for 2 months and then we will rescan from there. If the tumors show growth we will scratch the pills and go to plan B. If the tumors show zero growth but do not appear to be shrinking either, then I will continue to stay on the pill. Some patients have been on the pill for years and years just as maintenance so their tumors do not grow. Pretty cool and kinda annoying at the same time. Now the awesome part - the drug company will be picking up the bill on most of this (HOLLA!).
This all seems pretty simple, almost too simple. But that's pretty much all that's to it... not too bad!
Now onto yesterday's events.... Siteman Cancer Center with the D Girls....
Instead of random on-online cross words printed off, my sister busted out an actual book of cross word puzzles. While I was having an EKG completed, she completed the puzzle: The word BUTCHER in 26 different languages.... who exactly did you have in mind when you made this purchase, Kristin Jane?! After the EKG it was time for the bone marrow biopsy. Now I have had this performed twice before so I knew what I was getting myself into... GOOD DRUGS! The nurse was a hoot to begin with so it made things much easier. Krissy reassures me that both nurses were not making fun of me, but I do recall a lot of laughing on their end. Then again, I accused them of having a dance party in my room when a male doctor came in (who I apparently explained my infertility history to - OMG I was a mess). All I can say is THANK GOODNESS I do not remember much at all!
The Highlight of the day
If you are at all familiar with Barnes Hospital, they have a television station devoted to a fish tank. Yes, a fish tank. Fish swim around and old school soft rock songs are played. This station was introduced to my sister and I when we would visit my mother in the hospital 20+ years ago. For the 9 years she was in and out of the hospital she would always turn the fish on for us to watch. It was calming and nice to have in the background. This station is a Barnes staple and a favorite for my sister and I still to this day. In my hospital room where my bone marrow biopsy was going to be performed, I had a television so the first item of business was to find the fish. As I laid in bed making fun of Krissy in her ity-bity chair finding the word BUTCHER in 26 different languages, we were interrupted by my mom's favorite song playing on the tv with the fish. Immediately all bickering stopped and we found ourselves belting out Elton John. It was comforting to know that she was there with us.
The next morning....
Remember those college parties and waking up the next morning and asking "What happened?!". That was me this morning... Apparently I left my new BFF, my bone marrow nurse, yesterday evening high on drugs, or as she stated, "Stoned out of her mind!". Thank goondess for Krissy, she reminds me I held four different phone convos (OMG I am sorry, I have NO idea what we talked about and if I didn't have caller ID I would probably still be guessing who I called/called me). But this morning I am feeling back to normal, I simply have an 80 year old limp. But hey, it goes well with my 80 year old lungs! Overall, it was all good news from the doc, but I will get more into that later tonight or tomorrow. Time for some r&r!
Tuesday, April 19
Blown Away from Love and Support!
Wowsers... I am touched by everyone's messages, comments, and emails. Thank you all for your sweet words!
I ran into an old friend on Sunday before my biopsy and of course I am asked, "So what's new in your world?" Immediately I think, "Oh, same 'ol, same 'ol... school is great, I just had a wonderful girls weekend, oh, and I might have cancer.... but we won't know for sure until they cut me open at 7am tomorrow." As I managed to cover up any hesitation in my response and just simply brag about my amazing job, I began to think, how on earth do I share this news... without being completely blunt?! And then, how do I keep everyone updated without exhausting myself?!
I have found journaling to be one of the best stress relievers in my life. As I journal about this journey I'm about to once again visit, it dawned on me that blogging is the simplest, most peaceful, and most efficient outlet to share my news and updates. Hooray for technology! When I was diagnosed the first time Facebook wasn't even alive yet!
I finally found myself ready to share my news over the weekend, but I was not expecting the response that followed! I truly am blessed, thank you all for your much appreciated support. Now to answer a few questions... No, there's nothing you can do, although sending happy thoughts my way is always appreciated! And yes, you are more than welcome to add me to your prayer list, the more the merrier!
I feel calm and complete again after opening up; I no longer feel like I'm hiding a secret from the world. Although if you saw me, it is obviously not secret when you check out the scar on my neck!
Thank you all :)
I ran into an old friend on Sunday before my biopsy and of course I am asked, "So what's new in your world?" Immediately I think, "Oh, same 'ol, same 'ol... school is great, I just had a wonderful girls weekend, oh, and I might have cancer.... but we won't know for sure until they cut me open at 7am tomorrow." As I managed to cover up any hesitation in my response and just simply brag about my amazing job, I began to think, how on earth do I share this news... without being completely blunt?! And then, how do I keep everyone updated without exhausting myself?!
I have found journaling to be one of the best stress relievers in my life. As I journal about this journey I'm about to once again visit, it dawned on me that blogging is the simplest, most peaceful, and most efficient outlet to share my news and updates. Hooray for technology! When I was diagnosed the first time Facebook wasn't even alive yet!
I finally found myself ready to share my news over the weekend, but I was not expecting the response that followed! I truly am blessed, thank you all for your much appreciated support. Now to answer a few questions... No, there's nothing you can do, although sending happy thoughts my way is always appreciated! And yes, you are more than welcome to add me to your prayer list, the more the merrier!
I feel calm and complete again after opening up; I no longer feel like I'm hiding a secret from the world. Although if you saw me, it is obviously not secret when you check out the scar on my neck!
Thank you all :)
Monday, April 18
"You have a relapse."
March 29: It's the beginning of spring so once again I find myself at Barnes Hospital for routine scans. Although I have been in remission for 6 years, I still visit my oncologist twice a year just to check in... she has never been 100% satisfied with my health post-cancer. I visited the department of nuclear medicine for my PET scan, laid in a tube, and took a nice nap while they took pictures. I return to school that day and bragged to my co-teacher about feeling incredibly healthy and how I can't wait for Wednesday's happy hour to celebrate another successful doctor's appointment.
March 30: Missed call: Dr.'s Office at Siteman Center. I called my doctor's coordinator back immediately wondering why on earth she could be calling. It is routine for me to have my scans on Monday, and meet with my oncologist on Wednesday after the results are in. Today is Tuesday, I'm confused... "Hi Melissa, I'm calling because we saw some "uptake" on your scans and the doctor would like to run some more tests something something something something...." I'm pretty sure I blanked out for the rest of our 8 minute phone convo.
March 31: The appointment started off great. The tech drawing my blood asked if I was a model (love a good ego boost before I'm being told I have cancer!). In the waiting room I ALMOST beat my sister at a word search (a waiting room ritual, and something I continually lose at - don't you think she would let me win one especially knowing I was moments away from being told my cancer was back?!). We met with the doctor and sure enough, she has discovered two new masses in my chest, one resting on the outside of my lungs and one inside my right lung (well, at least now we know why I cough so much!). It will not be confirmed that this is the Hodgkin's until a biopsy is performed. Here we go again... time for my sister (the awesome caregiver) and I to prepare for some life changes... pre-cancer meeting happy hour HERE WE COME!
The next week consisted of more appointments, more scans, more blood work, a consultation with my pulmonary surgeon, and answering A LOT of repetitious questions. Why can't I just have one giant file for every department to review instead of me repeating every single surgery I have had since 2003? (And count it, I'm up to 9).
April 11: Biopsy day. Considering I had my throat cut open and an extremely uncomfortable breathing tube scratch my throat, I couldn't complain much. Oh, except for that heparin shot in my belly - I don't recommend that one! With the care of the most amazing sister in the world, and an anesthesiologist who made me feel like I was filling out a dating application instead of my pre-op info (although he was pretty nice to look at :) I would say surgery was a success. Now time to sit on the couch for the rest of the week and eat ice cream, socialize with visitors, have all meals made for me, and be waited on hand and foot. Not too shabby! Oh, and wait around for the phone to ring, hoping to hear there was a fly on the camera lens and it just simply appeared to be a tumor. Ha, wish me luck on that one...
April 14: Phone call: "Hi Melissa, we have your results back and it is for sure the Hodgkin's." This time I was prepared with pen and paper and made her repeat every detail because my brain was not AT ALL interested in learning about chemo options. Here is what I learned so far: I will be enrolling in a clinical trial (considering the chemo for my Hodgkin's Lymphoma did not work the first time, it is not believed to be successful a second time. So on to experimental drugs). The drug I will be taking comes in PILL FORM. WOOOO HOOOO!! I will be on a CHEMO PILL!!! Goodness, the advances in medicine today are remarkable! With this new drug I am not expected to lose my hair (hooray!) and should expect very little nausea. This is the BEST news I have heard in weeks!!
I meet with my oncologist again on Wednesday to learn all the details (and ask my 29843849 questions) and pick up my chemo pills. Oh, and they squeezed in a bone marrow biopsy for that day as well... sneaky bastards (and the biopsy is only to make sure it hasn't spread to the bone marrow).
"Treatment" begins Thursday in the comfort of my own home :).
All and all, for having cancer, life is good.
March 30: Missed call: Dr.'s Office at Siteman Center. I called my doctor's coordinator back immediately wondering why on earth she could be calling. It is routine for me to have my scans on Monday, and meet with my oncologist on Wednesday after the results are in. Today is Tuesday, I'm confused... "Hi Melissa, I'm calling because we saw some "uptake" on your scans and the doctor would like to run some more tests something something something something...." I'm pretty sure I blanked out for the rest of our 8 minute phone convo.
March 31: The appointment started off great. The tech drawing my blood asked if I was a model (love a good ego boost before I'm being told I have cancer!). In the waiting room I ALMOST beat my sister at a word search (a waiting room ritual, and something I continually lose at - don't you think she would let me win one especially knowing I was moments away from being told my cancer was back?!). We met with the doctor and sure enough, she has discovered two new masses in my chest, one resting on the outside of my lungs and one inside my right lung (well, at least now we know why I cough so much!). It will not be confirmed that this is the Hodgkin's until a biopsy is performed. Here we go again... time for my sister (the awesome caregiver) and I to prepare for some life changes... pre-cancer meeting happy hour HERE WE COME!
The next week consisted of more appointments, more scans, more blood work, a consultation with my pulmonary surgeon, and answering A LOT of repetitious questions. Why can't I just have one giant file for every department to review instead of me repeating every single surgery I have had since 2003? (And count it, I'm up to 9).
April 11: Biopsy day. Considering I had my throat cut open and an extremely uncomfortable breathing tube scratch my throat, I couldn't complain much. Oh, except for that heparin shot in my belly - I don't recommend that one! With the care of the most amazing sister in the world, and an anesthesiologist who made me feel like I was filling out a dating application instead of my pre-op info (although he was pretty nice to look at :) I would say surgery was a success. Now time to sit on the couch for the rest of the week and eat ice cream, socialize with visitors, have all meals made for me, and be waited on hand and foot. Not too shabby! Oh, and wait around for the phone to ring, hoping to hear there was a fly on the camera lens and it just simply appeared to be a tumor. Ha, wish me luck on that one...
April 14: Phone call: "Hi Melissa, we have your results back and it is for sure the Hodgkin's." This time I was prepared with pen and paper and made her repeat every detail because my brain was not AT ALL interested in learning about chemo options. Here is what I learned so far: I will be enrolling in a clinical trial (considering the chemo for my Hodgkin's Lymphoma did not work the first time, it is not believed to be successful a second time. So on to experimental drugs). The drug I will be taking comes in PILL FORM. WOOOO HOOOO!! I will be on a CHEMO PILL!!! Goodness, the advances in medicine today are remarkable! With this new drug I am not expected to lose my hair (hooray!) and should expect very little nausea. This is the BEST news I have heard in weeks!!
I meet with my oncologist again on Wednesday to learn all the details (and ask my 29843849 questions) and pick up my chemo pills. Oh, and they squeezed in a bone marrow biopsy for that day as well... sneaky bastards (and the biopsy is only to make sure it hasn't spread to the bone marrow).
"Treatment" begins Thursday in the comfort of my own home :).
All and all, for having cancer, life is good.
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