After 2 MRI's we found out that there are not any tumors in my lower back (woo hoo!) the back pain is caused by a bulged disk (I got epidural cortisone injections to help with that) and that the spot on my spleen is a vascular abnormality (something else to worry about in the future). So no cancer on those!! We are waiting on the tumor markers test, I will get the results next week. Im gonna worry about those then, I just need to relax!
Thank you to everyone for all of your wonderful thoughts and prayers, they mean so much to us. I feel so blessed to have such a wonderful support system, even after this long, you all are still here for me! Thank you!!
Love you!!!
Wednesday, October 5, 2011
Tuesday, September 20, 2011
Reality
Its been a while since I've blogged anything. Honestly, I needed a cancer break. After I finished my last cycle I didn't want anything having to do with my diagnosis & treatment. I still despise the scarves I have to wear every day just because I feel like I have "cancer patient" written across my forehead. I need to buy one that says "Cancer Survivor!", maybe that will make it easier? Actually, one that says "Survivor" will suffice, I hate the word "cancer".
Through the last month (My last treatment was on Aug 23rd) I've come to realize that I need to come to grips with the fact that I do/did (more on that in a bit) have cancer, that I fought an awesome battle, and (hopefully) beat it. My friend at work made me get my pictures taken wearing one of my scarves (I was more than happy to skip this years faculty pictures) because I needed to be able to look back at this time. She is right (though the picture will stay buried in a photo album for years). I have a tendency to assume that if I don't think about something it will just go away and I hoped the same would happen with cancer.
But my reality is that I am dealing with this and will be for a while. On Thursday I got a call from the Dr and she said that my tumor markers went up. It could be a fluke, it could be something to be worried about. Like the last 6 months....we need more tests to figure it out. On Friday I had a CT scan and I am waiting for the Dr to call me back with the results. I will have to go in for a repeat blood test and probably a physical exam with my surgeon {yay!}. With my cancer being so rare there isn't really one test to tell us if its back, it took a myriad of tests and guesses to figure out if I even needed chemo to begin with.
I really hope I don't have to do another cycle of chemo or anything else, I'm so sick of being sick.
I want my hair to grow back and I want to get on with my life...without cancer!
Update (about 20 minutes after writing this post): The Dr called and they are worried the cancer may be in my spleen now (or maybe its a totally different cancer, I didn't think to ask). They are also worried about my Sciatica cause that could be caused by tumors and there are changes in my abdominal wall...whatever that means. So Im now scheduled for two MRI's and my port wont be coming out this week. I hate to ask this...but WHY??
Through the last month (My last treatment was on Aug 23rd) I've come to realize that I need to come to grips with the fact that I do/did (more on that in a bit) have cancer, that I fought an awesome battle, and (hopefully) beat it. My friend at work made me get my pictures taken wearing one of my scarves (I was more than happy to skip this years faculty pictures) because I needed to be able to look back at this time. She is right (though the picture will stay buried in a photo album for years). I have a tendency to assume that if I don't think about something it will just go away and I hoped the same would happen with cancer.
But my reality is that I am dealing with this and will be for a while. On Thursday I got a call from the Dr and she said that my tumor markers went up. It could be a fluke, it could be something to be worried about. Like the last 6 months....we need more tests to figure it out. On Friday I had a CT scan and I am waiting for the Dr to call me back with the results. I will have to go in for a repeat blood test and probably a physical exam with my surgeon {yay!}. With my cancer being so rare there isn't really one test to tell us if its back, it took a myriad of tests and guesses to figure out if I even needed chemo to begin with.
I really hope I don't have to do another cycle of chemo or anything else, I'm so sick of being sick.
I want my hair to grow back and I want to get on with my life...without cancer!
Update (about 20 minutes after writing this post): The Dr called and they are worried the cancer may be in my spleen now (or maybe its a totally different cancer, I didn't think to ask). They are also worried about my Sciatica cause that could be caused by tumors and there are changes in my abdominal wall...whatever that means. So Im now scheduled for two MRI's and my port wont be coming out this week. I hate to ask this...but WHY??
Thursday, August 11, 2011
Last Cycle!!
I started my last cycle of chemo on Monday!!! I have two days left for this week and then two Tuesdays and as long as my blood work comes back like it has been, I AM DONE!
I can't wait until my hair starts growing again, or until I can open the fridge without gagging, or feed the dogs without running to the sink. My sense of smell is so sensitive and everything stinks to me, even I stink to me! Seriously! I think I smell like chemicals. I dont know if I really do, but smells travel with me too, so maybe Im smelling the chemo center all the way home.
I saw my surgeon on Friday and he said my incision looks good. He also had to give me some antibiotics because I keep getting ingrown hairs (my leg hair STILL hasn't stopped growing).
He also wants me to take 10-14 days off after my last chemo treatment, but HA-HA work wont allow that without me losing ALL my sick leave for the year. So we will see what happens.
On the plus side, mom has been here for about a week and a half and it has been such a blessing having her here. She has helped so much, the dogs are even wanting to hang out with her instead of me and Gary. I love having my mom with me. She needs to retire so she can move up here with me :0)
I can't wait until my hair starts growing again, or until I can open the fridge without gagging, or feed the dogs without running to the sink. My sense of smell is so sensitive and everything stinks to me, even I stink to me! Seriously! I think I smell like chemicals. I dont know if I really do, but smells travel with me too, so maybe Im smelling the chemo center all the way home.
I saw my surgeon on Friday and he said my incision looks good. He also had to give me some antibiotics because I keep getting ingrown hairs (my leg hair STILL hasn't stopped growing).
He also wants me to take 10-14 days off after my last chemo treatment, but HA-HA work wont allow that without me losing ALL my sick leave for the year. So we will see what happens.
On the plus side, mom has been here for about a week and a half and it has been such a blessing having her here. She has helped so much, the dogs are even wanting to hang out with her instead of me and Gary. I love having my mom with me. She needs to retire so she can move up here with me :0)
Ring, ring, ring, ring.....
(I wrote this a couple weeks ago and just decided to post it. I wasn't sure because of the infertility stuff)
The ringing could and probably will go on and on....its a side effect of the Cisplatin, one of my chemo drugs. And of course I have to get one of the "rare" side effects that most people do not experience....ringing in my ears, which can lead to high frequency hearing loss. Im going to have to talk to my Dr about this before my next round of chemo. Hearing loss runs in the family and I really hope it doesn't happen to me.
Other than that annoying side effect, the usual ones are still present, my nausea accompanies me most mornings, Im still always tired, and super achy from the Neulasta shot.
One thing that has been on my mind lately is that of my fertility (or infertility). Since I have one ovary left the Dr said conception would still be possible (before chemo). Now, two of my chemo drugs can cause chemo induced menopause. I wont know for about 6 months if my remaining ovary has any function. My Dr has attempted to "shut down" my ovary by having me take birth control during my chemo treatments. She didnt sound very confident when we devised this plan but were hoping.
Im not really hoping that it still works just to concieve, but more so I can be "normal". Everything has been so abnormal and rare for me that it would be great to just have something go right. If I can't have my own kiddos, totally ok with that!! I've had more than enough adoption experience to know that "blood" doesn't make a family. I have a wonderful family and some of our brood is adopted. Im not looking forward to the emotional roller coaster that comes with adoption, but in the end it will all work out.
The ringing could and probably will go on and on....its a side effect of the Cisplatin, one of my chemo drugs. And of course I have to get one of the "rare" side effects that most people do not experience....ringing in my ears, which can lead to high frequency hearing loss. Im going to have to talk to my Dr about this before my next round of chemo. Hearing loss runs in the family and I really hope it doesn't happen to me.
Other than that annoying side effect, the usual ones are still present, my nausea accompanies me most mornings, Im still always tired, and super achy from the Neulasta shot.
One thing that has been on my mind lately is that of my fertility (or infertility). Since I have one ovary left the Dr said conception would still be possible (before chemo). Now, two of my chemo drugs can cause chemo induced menopause. I wont know for about 6 months if my remaining ovary has any function. My Dr has attempted to "shut down" my ovary by having me take birth control during my chemo treatments. She didnt sound very confident when we devised this plan but were hoping.
Im not really hoping that it still works just to concieve, but more so I can be "normal". Everything has been so abnormal and rare for me that it would be great to just have something go right. If I can't have my own kiddos, totally ok with that!! I've had more than enough adoption experience to know that "blood" doesn't make a family. I have a wonderful family and some of our brood is adopted. Im not looking forward to the emotional roller coaster that comes with adoption, but in the end it will all work out.
Tuesday, July 19, 2011
where oh where has my energy gone?
Day 23
My 2nd chemo cycle started yesterday. Not the most fun place to be, but its gotta be done. I didn't blog at all last week because I had to have my head shaved and I was soooo depressed for a few (okay, most of the week) days. We did buy a wig for me. It looks like my hair before I cut it short for the beginning of chemo. So I feel comfortable with it, but its hot so I only wear it when I know Im going to be in an air conditioned room. I have a hard time dealing with people staring at me when Im wearing a scarf or one of my hats. I hope I didnt do that to people before I had to go through this, I will make sure I dont.
Im ok with it now, I don't like it at all but I can deal. I know it will grow back 6 weeks after my last chemo treatment. One bummer, my leg hair hasn't stopped growing....seriously chemo?!?!
With this new cycle I have found that I have zero energy. I am asleep or trying to sleep the entire time while sitting there during my 6-7 hour treatments. When I get home I want to sleep (and do). Today though, I made an effort to get my butt outa bed. I took Ben and Mossy for 15 minute walks each (I do not have the strength to take them together). It was nice to get out and move a little. I haven't had a lot of nausea yet, which I am thankful for. My appetite comes and goes though. One of the weird side effects I have had is extremely dry lips and mouth, I am constantly applying chapstick and drinking water or I have a hard candy in my mouth. Its pretty annoying.
Overall, I think I am coping ok. I am so thankful for everyone who has helped us. My mom-in-law drives me to chemo most days of the week when she doesn't, my dear friend Zennetta does. Gary has been wonderful to keep the house picked up, along with work, and his outside chores. And all my wonderful friends and neighbors who have brought dinner to us, THANK YOU!!! The dinners help out so much because I can't cook during my chemo weeks and a few days after, I guess I could try but we would be eating mac n cheese every night. So thank you, it is so appreciated.
Also, a special thanks to my cousin Lucas and my little brother Jimmy. Lucas shaved his head in my honor at his wedding (!!) over the weekend. I hope I get the video soon because I am so anxious to see everything I missed. I wanted to go so bad but Dr said I couldn't be around that many people on a plane or at the wedding, so we went camping instead. My brother did it yesterday and it meant so much to me. I feel so loved by both of these wonderful men in my family. I love you Luke and Bo (short for Jimbo)!! You two mean so much to me, I love you so much and I can't wait to see you when all of this is over!
Blessing for the day: Everything really, I feel very blessed to have such wonderful family and friends.
My 2nd chemo cycle started yesterday. Not the most fun place to be, but its gotta be done. I didn't blog at all last week because I had to have my head shaved and I was soooo depressed for a few (okay, most of the week) days. We did buy a wig for me. It looks like my hair before I cut it short for the beginning of chemo. So I feel comfortable with it, but its hot so I only wear it when I know Im going to be in an air conditioned room. I have a hard time dealing with people staring at me when Im wearing a scarf or one of my hats. I hope I didnt do that to people before I had to go through this, I will make sure I dont.
Im ok with it now, I don't like it at all but I can deal. I know it will grow back 6 weeks after my last chemo treatment. One bummer, my leg hair hasn't stopped growing....seriously chemo?!?!
 |
| Ta-Da! me with my new do'! |
Overall, I think I am coping ok. I am so thankful for everyone who has helped us. My mom-in-law drives me to chemo most days of the week when she doesn't, my dear friend Zennetta does. Gary has been wonderful to keep the house picked up, along with work, and his outside chores. And all my wonderful friends and neighbors who have brought dinner to us, THANK YOU!!! The dinners help out so much because I can't cook during my chemo weeks and a few days after, I guess I could try but we would be eating mac n cheese every night. So thank you, it is so appreciated.
Also, a special thanks to my cousin Lucas and my little brother Jimmy. Lucas shaved his head in my honor at his wedding (!!) over the weekend. I hope I get the video soon because I am so anxious to see everything I missed. I wanted to go so bad but Dr said I couldn't be around that many people on a plane or at the wedding, so we went camping instead. My brother did it yesterday and it meant so much to me. I feel so loved by both of these wonderful men in my family. I love you Luke and Bo (short for Jimbo)!! You two mean so much to me, I love you so much and I can't wait to see you when all of this is over!
Blessing for the day: Everything really, I feel very blessed to have such wonderful family and friends.
Sunday, July 10, 2011
Day 13
Guess what? Its finally happening, I am losing my hair. I can't even pretend to be happy about this cause this is one of the worst things yet! I woke up to find a couple strands on my pillow, after my shower more than normal came out and I have been shedding throughout the day. My head is also very itchy, I am assuming it has something to do with the hair follicles giving up since my body isn't making any new hair.
I am really bummed about this. I have made the decision to buy a wig, it wont look like my hair before, maybe more like my hair now. I don't think I will wear it every day, but I don't yet have the courage to step into a restaurant or store wearing a scarf.
Gary keeps saying we're going to have a head shaving party...I guess that will happen within the next week or so.
This sucks.
I am really bummed about this. I have made the decision to buy a wig, it wont look like my hair before, maybe more like my hair now. I don't think I will wear it every day, but I don't yet have the courage to step into a restaurant or store wearing a scarf.
Gary keeps saying we're going to have a head shaving party...I guess that will happen within the next week or so.
This sucks.
Friday, July 8, 2011
Who's bones are these?
It seems that I am finally having some sort of reaction to the neulasta shot (or else I just developed arthritis all of a sudden?) Since getting the shot I have been having some mild pain on the back of my hips (I guess that's my lower back huh?) and my shoulder blades. The pain has been tolerable and I haven't needed to take anything for it. Well, this morning I woke up with the worst body aches EVER! Everything from my ankles to my jaw hurts. I want to take a bath in Bengay! I have just taken Ibuprofin, I'm waiting for the nurse to call me back and I wont be opposed to something that will knock me out for 3-4 days.
So far that is the only major physical thing I have had happen to me, emotionally....is another story. I don't see myself in the mirror, I'm not crazy, I just don't see me. I don't like my short hair, my puffy face, my sunk in eyes, the circles around my eyes. Ive always thought that my eyes were my best feature, I love my eyes! They are wonderful eyes, they allow me to see, but they are also the only part of me that look just like my moms -love my eyes! But lately I dont see myself in the mirror, I feel very blessed most days to be as lucky as I am, but I feel like this illness has finally taken over my body cause I dont look like how I feel (most days). I am rambling and I dont think I make any sense mostly because I'm still dreaming of that Bengay filled bathtub....
Blessing for the day: My eyes :0)
So far that is the only major physical thing I have had happen to me, emotionally....is another story. I don't see myself in the mirror, I'm not crazy, I just don't see me. I don't like my short hair, my puffy face, my sunk in eyes, the circles around my eyes. Ive always thought that my eyes were my best feature, I love my eyes! They are wonderful eyes, they allow me to see, but they are also the only part of me that look just like my moms -love my eyes! But lately I dont see myself in the mirror, I feel very blessed most days to be as lucky as I am, but I feel like this illness has finally taken over my body cause I dont look like how I feel (most days). I am rambling and I dont think I make any sense mostly because I'm still dreaming of that Bengay filled bathtub....
Blessing for the day: My eyes :0)
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