Hi everyone! I've been feeling pretty good which means it's been hard to keep me from being what I love...MOM! That being said, I'm exhausted by bedtime which leaves little time for reflection/emailing/phone calls etc before I literally fall asleep the second I sit down. Important to mention that I'm good in a not starting chemo kind of way, but in so many ways being in LIMBO is tricky. It's tricky on Jeff and tricky on the psyche.
I still having pain and an incision that is not healing my mind still worries as much as I try to let it not. It's hard not to when I have pain. It's managed by pain meds, but it's there. Lots of pain in my back. Here are the steps we are doing to check things out.
1. Tom, thurs. I go in for a chest x-ray to see if there are any changes on my lungs
2. Friday Morning bright and chipper at 6:15 am. I go in for an MRI of my spine. This will hopefully shed some light on the T7 vert. which is where the pain is stemming from. If it a hairline fracture or more melanoma causing this?
3. Tues. I go in and see Dr. Ross. Hopefully we can do something to take care of this incision site because now it's oozing.
4. We are pending Labor Day Plans and with all these new appt., we are minute by minute.
Without chemo, all I want to do is keep things normal and be as involved in the day to day with Zach and his activities as possible. It's a weird place. I walk around looking like the healthiest most normal person around yet a lot of things going on on the inside. You wouldn't know it by seeing me, but I've been an emotional roller coaster. It all makes sense but just because it makes sense sometimes I do wish I could shake this BIG MONKEY call MELANOMA off my back but it still stares at me in the face. The hard part is we go from it staring at me in the fight of my life, staring at me in the sense I may have to deal with this for the next 40+ years, or staring at me in the sense of is it something I go in have surgery, do the work (chemo) and BAM it's gone forever....Man wouldn't that thought be nice....GONE FOREVER! That is what we are all praying for. The unknown/grey areas are always what are the challenge.
Lots of changes...Z started his new school which in the big picture is completely amazing and the right thing, but in the day to day small picture I have to say I've been an emotional wreck as I navigate whether or not I've made the right decision, if it's too much, then right back to 100% confident it's right. I'm all over the place, but as we near the end of second week, I'm completely eager and excited about the possibilities and learning opportunities he will have and know flourish. He just needed to get into a groove and get his feet wet in terms of learning the classroom rules and procedures. He will be beginning Soccer Shots and is really excited about that, swims on wed. like a super fish, and LOVES Coach Rod for Tennis. He is a bundle of energy LOVES it all.
Ok, pray for me that these appt. go well. Hope everyone has a wonderful Labor Day Weekend and that the new school years for many of us con't to be positive.
love ya,
Jen
Wednesday, August 31, 2011
Thursday, August 25, 2011
My Rock, My Partner in Crime, My Everything... This is our Dance Jeffrey Dean-I love you!
There is no other man I would rather take this journey with than my husband. I love you Jeffrey Dean Christie. You are unlike any other. We have been through everything together and we expect to kick Cancer's Bleep! Live Fully, Love Completely, and DANCE. Our DANCE is everyday! All we have is now and what a gift to realize that at such a young age. There is beauty in illness and when we silence this beast for a 2nd time how lucky are we to have the perspective and richness of LIFE and to LOVE the simplicity of everyday moments. Our love is RAW and AUTHENTIC. The silly desires don't matter...I am so lucky to live in contentment!
Here was a Facebook Status Update from me the other day and I feel like it says a lot:
.
force myself to create a new path with new purpose. It's up to me to choose to that
purpose and new direction because there are no constants. Everyday, a little
lost. Everyday a new demon to silence.
That Is my purpose. To do just that, silence It and replace It with Faith and Calmness
and something happy :-) I strive to have the strength and endurance to face it all
gracefully. I am...I will. There are times when the only way that is possible is with help.
So, thank you~
CHEERS TO YOU ALL!
SO INCREDIBLY HAPPY...THESE PICTURES ARE MEANINGFUL BECAUSE I WAS IN THE HOSPITAL A WEEK BEFORE THIS EVENT. I BEAT THIS DISEASE ONCE AND WILL DO IT AGAIN. WE WEREN'T EVEN SURE THEN THAT WE WOULD MAKE IT TO THIS DAY AND WE DID. HAIR EXTENSIONS AND ALL. ;-) LIVING WITH THE COMPASSION TO REALIZE THAT EVERYONE WALKING DOWN THE STREET HAS A STORY. TO AN OUTSIDER, THE HARDEST PART ABOUT THIS DISEASE IS I LOOK LIKE A NORMAL, HEALTHY MOM. NOBODY CAN SEE THE PAIN OR THE DISTRESS THAT IS HAPPENING INSIDE. CANCER IS A SILENT DEMON THAT I AM COMMITTED TO HELPING PEOPLE SEE THE GIFTS THAT IT GIVES RATHER THAN THE DEMONS IT CREATES. THERE ARE GIFTS, WE JUST NEED TO SEE THEM. <3
Wednesday, August 24, 2011
My Little Miracle Himself, Working Miracles on Mamma!
What on earth would I do without the love and support of Family, Friends, and the sense of community I live in that keep me going everyday. Words cannot express how blessed and how grateful I am to be surrounding by such wonderfulness. I appreciate all the work and effort that goes into holding up our family during this tumultuous time.
Taking amazing care of Mamma. Dream BIG kid, you already have what it takes. You are my miracle already...I love you with my everything. I love you Winkerbean...
Amazing Photo
This is what showed up in my shower the morning I got the news that chemo was going to be post-poned because the tumors in my lungs, liver, etc have shrunk on their own significantly. Coincidence? I know not. I feel the positivity, BELIEVE...I do and think it's beautiful~
Sunday, August 21, 2011
Are you ready for this? The Power of Prayer and Positivity is ALIVE AND ACTIVE and all of you are part of the first phase of our Miracle!
Ok People, I have always believed that if you put yourself in a box, that safe little place that is nice but doesn't leave room for Excellence of any kind, you are bound to get by just fine, sure... However, if you fully believe, push the envelope, accept nothing mediocre, believe in miracles, and DREAM BIG you always end up in a place that is so wonderful it's almost surreal. Even when people think you have lost your mind and are a little unsure where your enthusiasm comes from you keep believing. Sooner or later you are bound to see greatness in your lifetime. Greatness is here People. Miracles are happening and it's because of the power of positivity, prayer, and the goodness of the human spirit that I am sitting here writing this at this moment. I'm in complete and utter shock.
Once I found out that Biochemo was my path, I was self admittedly anxious. Ok, I was petrified. I have been praying, willing, visualizing, meditating, you name it pretty much escorting this melanoma bastard out of my body. I had a couple of calls into MDA today (Friday) 1. for my anxiety, and 2. to hear the report of my tests from wed. Results still were not in this morning. I was told to call back around noon so I decided to get in the shower and just push through the day. While in the shower, I noticed...
Holy Cow! What you ask?
Once I found out that Biochemo was my path, I was self admittedly anxious. Ok, I was petrified. I have been praying, willing, visualizing, meditating, you name it pretty much escorting this melanoma bastard out of my body. I had a couple of calls into MDA today (Friday) 1. for my anxiety, and 2. to hear the report of my tests from wed. Results still were not in this morning. I was told to call back around noon so I decided to get in the shower and just push through the day. While in the shower, I noticed...
Holy Cow! What you ask?
It was the ....
Ichthys
I know if may sound weird, but I swear it was perfectly shaped (hair) and to me, it was a message that no matter how hard the fight, I will be protected and I'm not alone. Remember, this was the morning when I found this sign in the soap dish of my shower. At 5pm, Dr. Kim called me personally. Not his nurse, not a PA, Dr. Kim directly. The news he had for me was so amazing that it felt like a prayer had been answered. He said that the results of my CT scan showed my lung nodules and liver tumor showing considerable shrinkage on their own without any chemo. A-M-A-Z-I-N-G!
Dr. Kim said that he doesn't want to start biochemo on Tues. because he didn't want their to be any confusion whether or not it was my body shrinking the tumors or the chemo. Music to my ears. Best News EVER! I fell to the ground in a puddle of tears so completely in shock and relieved by the news. I ran down and cried to Jeff, to mom, and then immediately ran across the street to the neighbors to share the great news.
Basically how it was described to me was that because I was pregnant during the time my re-occurrence was discovered my immune system was surpressed. In pregnancy your body's immune system drops in order to not reject the fetus. After, my body started rebooting itself and my hormones were going back to normal my immune system kicked in again and essentially began attacking the melanoma. Wicked cool!
I'm not so naive to I think that I'm completely out of the woods or even close for that matter, I do after all have Stage 4 Melanoma. But hey, I'll take anything positive I can get and we can't discount the fact that I'm Jen...I'm going to do this! What this means now is I get to get Z settled into his new school, and we will re-scan in 4 weeks. If I'm showing signs of more shrinkage, I keep letting my body do it (obv. best case scenerio), if tumors have grown again chemo will start. Maybe by that time, BRAF will be distributed and we won't have to go the Bio-chemo route. Obv. if anything weird shows up on my body, I go in right away.
With Cancer comes extreme highs and lows. There are many moments of confusion, celebration, set backs etc, but I'm ready to keep fighting so I can be around to be an example to Zachary that mom never gives up even when things get hard. Sat. night a rash/ terrible itching started at both incision sites along with some middle of the back pain so we take the punches as they come, will call on Monday and hopefully I'll be able to keep everyone in the loop.
For now, I'm leaving you very happy that chemo won't be starting this week! YEAH!
Thank you to everyone that is helping our family deal during this incredibly tumultuous time of not knowing what the next day let alone hour brings.
Keep the faith...I am <3
Jen
Tuesday, August 16, 2011
Monday, August 15, 2011
The Next Chapter: Our Plan of Attack!
It has been quite the ride with this melanoma beast since 2006 when it first showed it's face. It has been an even bigger roller coaster as we learned this monster has joined my body in a stage 4 fashion. It's not something that easily gets processed completely. You go through your moments of denial, shock, anger, confusion, frustration, disbelief, and rage and then realize that the only one all those emotions hurt are yourself.
You get to a place where you realize that petty/meaningless stuff is just that... petty and meaningless. It always was and always will be so why waste your energy. You find yourself traveling down this path that you have no idea where you are going and the truth is, no one around you does either. Sometimes it feels like the blind leading the blind, but you just keep putting one foot in front of the other not looking back and desperately trying not to make sense of what is ahead.
The only thing you do is BELIEVE! You breathe it, you own it, you are it..... BELIEVE! There is no room in my physical body to accept any other path than that. That is my story and that is what I'm sticking too. ;-p My goal setting, stubborn demeanor allows me to not accept anything less. All the rest will fall into place. Slowly but surely with all your help we are beginning to see some results to all that positivity and I in my core truly believe that.
So, this appt today was highly anticipated as we were eager to at least have a plan. Two things we specifically prayed for were that my results came back BRAF + and that we had a plan. Both of those things came true. In my book, not a coincidence so thank you for your prayers, support, and positivity. If solving my melanoma issue was as easy as BRAF, well then there wouldn't be millions of people struggling with this beast, but at least it gives me that option. We knew full well that this wasn't going to be easy so let me explain the steps.
Ok, so BRAF isn't FDA approved just yet and getting me into a study could take a couple of weeks. It's going to be approved soon, but no one knows exactly when. It could be tom, next week, or in a couple of months. Either way, I would need to wait to get the drug. Wait to be included in the study, or wait for FDA approval. BRAF also isn't exactly a cure either. The issue with it is if you take it and it shrinks the tumors and then reoccurs, my understanding is that if it comes back there is a resistance to the drug. Nothing is an exact Science but it is a nice option to have in our back pocket. I'll take as many options as I can get. It can prolong life quite considerably which means that much more time for research. I just have to keep the FAITH. With the rate my tumors were growing, waiting doesn't set well with the medical team, so what do we do first is the question. The answer for now is biochemotherapy!
Before I get there, I did want to tell you a bit about my body beginning to shrink these tumors on their own. Like I said on a previous entry, my tumors taken out on friday seemed to be dead/dying and the one on my scar line is now pretty much non existent. How do you make since of this and is this something that can really happen? Let me explain...
Dr. Ross and Dr. Kim are perplexed enough to order a new CT scan on wed. to see if there is any SIGNIFICANT change of growth of the tumors on my lungs, liver, bowel, and T7. We do know the one on my scar line is gone, but only if there is SIGNIFICANT change will we hold off on any treatments to see what my body will do on its own. I stress SIGNIFICANT change so chances of me still beginning biochemotherapy is still high. It is something to pray for though, it doesn't hurt to try. At the time I discovered the reoccurrence I was 18 weeks pregnant. This was over Easter weekend in April. Dr. Ross explains that during pregnancy our bodies immune system is suppressed in order for it to not reject the growing fetus. After the loss of my beautiful angel (that let me tell you is giving me more strength than you know) my body was ramping itself up to normal immune levels and pushing out all the hormones that were responsible for pregnancy. This could be a reason why my body may be fighting the melanoma on it's own. How cool would that be if my body is doing it naturally. I'll keep visualizing this terrible monster out of my body, and with the WILL to be there for Zachary's wedding, and the constant prayers it will be known that this girl has a lot more life left to do on this planet.
So, this week I will be prepping for my admission to the hospital and the beginning of biochemotherapy. Visitors are welcome and you can coordinate with my mom or Jeff whether or not it would be a good idea. On wed. I go back to MDA for bloodwork, my CT scan, to do an Echo cardio test on my heart, and a pulmonary test for my lungs. The chemo I will be given is pretty hard core so they want to make sure all bodily functions can handle the stress. I will lose my hair (maybe not right away), and chances of it causing infertility are high. The hair part is what it is and will grow back, the fertility part is harder for me to swallow but I'm accepting it. If I can be a part of the happenings of this planet for 40+ more years and see Zachary accomplish all of the wonderful things I know he will then it is all worth it. Jeff already told me adoption is not out of the question. Let's just get me in remission and get this beast OUT! I love my husband!
The way they describe having a stage 4 diagnosis is it's like having a chronic illness as there is no cure. It seems less daunting when put into the category of High Blood Pressure which he did. There is no cure, but it can be managed and needs to be monitored closely. I will always have Cancer. We can only hope I get to that point of remission and stay there for many, many years.
Tues. I get admitted to the hospital, and get all the tubes I need for the chemo to be administered. They originally wanted me to start monday, but are letting me do it tues. so i can be there for Zachary's 1st day of his new school. Super important in my book. How can I miss....I'm excited for him. I will stay overnight for 7 days. This will be hard on me to be away from Zachary, but I know I have to do it. I know visitors are welcome and to manage doctors coming in and out with updates either Jeff or my mom will be with me at all times. I will have 5 days of chemo and 2 days building my body back up to go home. It's supposed to wipe the living BLEEP out of you.
If everything goes as planned, I'm released to home for 2 weeks. The first week, I won't be feeling so hot and prob. get up to about 80% better by the 2nd week just in time to be readmitted all over again for another week of chemo. After that session I will get rescanned. If they see shrinkage, we know the cocktail is working and potentially I will stay on this routine 1 week in the hospital two weeks home for 6 rounds of chemo. A fight is an understatement. If it doesn't show signs of treatment, we will be forced to table it and try a new approach. This is where it is music to our ears to have options like BRAF because in 2006, there weren't any other options. The other option would be manage symptoms until well.... death which is what we all must look at at some point in our lives.
I do love you all, I am gaining strength from everyone, and feel blessed to be given the stage to tell my story. Hopefully through my experience I can make this road for someone else a little less confusing, take some of the anxiety out of not knowing, and shed some hope onto the journey. I do know I love my life and the people in it and hopefully this is just a temporary hiccup in the road that brings the gifts of perspective and a life full of wonderfulness for many years to come. I know I am loved and I hope you all know that too. WE can do this....I WILL DO THIS AND I WILL BE HERE TO TELL EVERYONE EXACTLY HOW IT IS DONE WITH A SMILE ON MY FACE. Once a teacher, always a teacher.. it's in my blood. I will never quit, I love the life I have been given the opportunity to live. NO REGRETS!
hugs and kisses,
Jen
You get to a place where you realize that petty/meaningless stuff is just that... petty and meaningless. It always was and always will be so why waste your energy. You find yourself traveling down this path that you have no idea where you are going and the truth is, no one around you does either. Sometimes it feels like the blind leading the blind, but you just keep putting one foot in front of the other not looking back and desperately trying not to make sense of what is ahead.
The only thing you do is BELIEVE! You breathe it, you own it, you are it..... BELIEVE! There is no room in my physical body to accept any other path than that. That is my story and that is what I'm sticking too. ;-p My goal setting, stubborn demeanor allows me to not accept anything less. All the rest will fall into place. Slowly but surely with all your help we are beginning to see some results to all that positivity and I in my core truly believe that.
So, this appt today was highly anticipated as we were eager to at least have a plan. Two things we specifically prayed for were that my results came back BRAF + and that we had a plan. Both of those things came true. In my book, not a coincidence so thank you for your prayers, support, and positivity. If solving my melanoma issue was as easy as BRAF, well then there wouldn't be millions of people struggling with this beast, but at least it gives me that option. We knew full well that this wasn't going to be easy so let me explain the steps.
Ok, so BRAF isn't FDA approved just yet and getting me into a study could take a couple of weeks. It's going to be approved soon, but no one knows exactly when. It could be tom, next week, or in a couple of months. Either way, I would need to wait to get the drug. Wait to be included in the study, or wait for FDA approval. BRAF also isn't exactly a cure either. The issue with it is if you take it and it shrinks the tumors and then reoccurs, my understanding is that if it comes back there is a resistance to the drug. Nothing is an exact Science but it is a nice option to have in our back pocket. I'll take as many options as I can get. It can prolong life quite considerably which means that much more time for research. I just have to keep the FAITH. With the rate my tumors were growing, waiting doesn't set well with the medical team, so what do we do first is the question. The answer for now is biochemotherapy!
Before I get there, I did want to tell you a bit about my body beginning to shrink these tumors on their own. Like I said on a previous entry, my tumors taken out on friday seemed to be dead/dying and the one on my scar line is now pretty much non existent. How do you make since of this and is this something that can really happen? Let me explain...
Dr. Ross and Dr. Kim are perplexed enough to order a new CT scan on wed. to see if there is any SIGNIFICANT change of growth of the tumors on my lungs, liver, bowel, and T7. We do know the one on my scar line is gone, but only if there is SIGNIFICANT change will we hold off on any treatments to see what my body will do on its own. I stress SIGNIFICANT change so chances of me still beginning biochemotherapy is still high. It is something to pray for though, it doesn't hurt to try. At the time I discovered the reoccurrence I was 18 weeks pregnant. This was over Easter weekend in April. Dr. Ross explains that during pregnancy our bodies immune system is suppressed in order for it to not reject the growing fetus. After the loss of my beautiful angel (that let me tell you is giving me more strength than you know) my body was ramping itself up to normal immune levels and pushing out all the hormones that were responsible for pregnancy. This could be a reason why my body may be fighting the melanoma on it's own. How cool would that be if my body is doing it naturally. I'll keep visualizing this terrible monster out of my body, and with the WILL to be there for Zachary's wedding, and the constant prayers it will be known that this girl has a lot more life left to do on this planet.
So, this week I will be prepping for my admission to the hospital and the beginning of biochemotherapy. Visitors are welcome and you can coordinate with my mom or Jeff whether or not it would be a good idea. On wed. I go back to MDA for bloodwork, my CT scan, to do an Echo cardio test on my heart, and a pulmonary test for my lungs. The chemo I will be given is pretty hard core so they want to make sure all bodily functions can handle the stress. I will lose my hair (maybe not right away), and chances of it causing infertility are high. The hair part is what it is and will grow back, the fertility part is harder for me to swallow but I'm accepting it. If I can be a part of the happenings of this planet for 40+ more years and see Zachary accomplish all of the wonderful things I know he will then it is all worth it. Jeff already told me adoption is not out of the question. Let's just get me in remission and get this beast OUT! I love my husband!
The way they describe having a stage 4 diagnosis is it's like having a chronic illness as there is no cure. It seems less daunting when put into the category of High Blood Pressure which he did. There is no cure, but it can be managed and needs to be monitored closely. I will always have Cancer. We can only hope I get to that point of remission and stay there for many, many years.
Tues. I get admitted to the hospital, and get all the tubes I need for the chemo to be administered. They originally wanted me to start monday, but are letting me do it tues. so i can be there for Zachary's 1st day of his new school. Super important in my book. How can I miss....I'm excited for him. I will stay overnight for 7 days. This will be hard on me to be away from Zachary, but I know I have to do it. I know visitors are welcome and to manage doctors coming in and out with updates either Jeff or my mom will be with me at all times. I will have 5 days of chemo and 2 days building my body back up to go home. It's supposed to wipe the living BLEEP out of you.
If everything goes as planned, I'm released to home for 2 weeks. The first week, I won't be feeling so hot and prob. get up to about 80% better by the 2nd week just in time to be readmitted all over again for another week of chemo. After that session I will get rescanned. If they see shrinkage, we know the cocktail is working and potentially I will stay on this routine 1 week in the hospital two weeks home for 6 rounds of chemo. A fight is an understatement. If it doesn't show signs of treatment, we will be forced to table it and try a new approach. This is where it is music to our ears to have options like BRAF because in 2006, there weren't any other options. The other option would be manage symptoms until well.... death which is what we all must look at at some point in our lives.
I do love you all, I am gaining strength from everyone, and feel blessed to be given the stage to tell my story. Hopefully through my experience I can make this road for someone else a little less confusing, take some of the anxiety out of not knowing, and shed some hope onto the journey. I do know I love my life and the people in it and hopefully this is just a temporary hiccup in the road that brings the gifts of perspective and a life full of wonderfulness for many years to come. I know I am loved and I hope you all know that too. WE can do this....I WILL DO THIS AND I WILL BE HERE TO TELL EVERYONE EXACTLY HOW IT IS DONE WITH A SMILE ON MY FACE. Once a teacher, always a teacher.. it's in my blood. I will never quit, I love the life I have been given the opportunity to live. NO REGRETS!
hugs and kisses,
Jen
Sunday, August 14, 2011
Overwhelmed by the generosity, support, and love...I am blessed!
I am blessed to have such wonderful people in my life. All the extra details going into supporting our family is way beyond anything I can comprehend at the moment. All I know is our unit feels completely loved and taken care of. I've been showered with help of all kinds and I really have no words to express my/our gratitude. Each and everyone of you are part of this recovery effort. We are going to do this. Thanks so much for loving us. We love you too.
Saturday, August 13, 2011
Just passing time in the ER--having a nice little Saturday, grin
I noticed some redness around the incision site on my breast and I know better than anyone not to mess around with infection. I took a picture and immediately called the doctor on call. They told us to come to the ER. I got a horrible infection in '06 that landed me in the hospital for 5-6 days. I definitely don't want that to happen so came in just to be safe. We have been here since about 2:45. It is now nearly 6pm. They started me on an IV, drew blood and now we are waiting on the results of my bloodwork which decides whether or not I go home with antibiotics or stay the night on IV antibiotics. I hope I get to go home. I miss my little man. In the meantime just trying to relax while we wait. They have free on demand movies, a super cool toilet that tucks in under the sink and just trying to rest up. Time will tell. love ya, Jen
The Miracle Work We are Beginning to See...It's happening...
Here is the update from surgery yesterday as I lay here sitll in jammies wanting nothing more than to celebrate with you something positive. So, I truly have been nothing but focussed to be positive, and trying to take things in stride (even when I had to go repeat my labs because they messed up). I'm telling you, my body is feeling all this positivity and I can feel all the prayers so powerfully. All my little angels were with me in the operating room. I know it.
I'm completely focussed on moving forward and ridding and maybe willing the Cancer out of my body. We aren't sure what is happening, but I even had Dr. Ross perplexed as to what he was discovering from observing my body and the tumors they took out yesterday. So, it appears to be that my body is attacking the tumors naturally which is mind boggling. You don't see Dr. Ross show anything but logic and when he took the tumors out he couldn't believe his eyes. They appeared to be dying and shrinking on their own. The one on my scar line is nearly gone and after surgery when Dr. Ross came in he said it's almost like my t-cells we were supposed to grow are already working. Now obviously this is great news, but we don't know what is happening inside my organs. hopefully the same thing. The down side to the tumors being almost dead is there is a chance they won't grown in the lab. This is def. something specific we can put our energy on and pray for. The one on my liver was about the same size as the one on my breast 3 1/2 cm. I do more scans this week and oh my gosh can you believe it if they are indeed shrinking inside too. We have confirmed the outside ones are indeed and that is a miracle in and of itself. Kristin Murphy, made me a meditation CD that I listen to daily and no joke I 100% believe the prayers and positivity I have going on around the world is part of the reason. This meditation CD help me keep my razor sharp focus and keeps me in the zone of ridding this uninvited guest called melanoma. I believe I will be cured. I really do! Keep up the good work in the vibe dept. because I def. am getting them. I'm a believer.
I'm sore from surgery, but that is to be expected. Do more bloodwork on Sunday as well as a repeat MRI. Then on Monday we meet on the medical side and discuss treatment. Most likely they will order a new CT scan before treatment begins and also pray that we find out about BRAF and that I am indeed BRAF+. Like I said before there are other options if I am not, but will would be great if I was.
ok, one battle over and now on to the next. One thing at time.
love you all,
Jen
I'm completely focussed on moving forward and ridding and maybe willing the Cancer out of my body. We aren't sure what is happening, but I even had Dr. Ross perplexed as to what he was discovering from observing my body and the tumors they took out yesterday. So, it appears to be that my body is attacking the tumors naturally which is mind boggling. You don't see Dr. Ross show anything but logic and when he took the tumors out he couldn't believe his eyes. They appeared to be dying and shrinking on their own. The one on my scar line is nearly gone and after surgery when Dr. Ross came in he said it's almost like my t-cells we were supposed to grow are already working. Now obviously this is great news, but we don't know what is happening inside my organs. hopefully the same thing. The down side to the tumors being almost dead is there is a chance they won't grown in the lab. This is def. something specific we can put our energy on and pray for. The one on my liver was about the same size as the one on my breast 3 1/2 cm. I do more scans this week and oh my gosh can you believe it if they are indeed shrinking inside too. We have confirmed the outside ones are indeed and that is a miracle in and of itself. Kristin Murphy, made me a meditation CD that I listen to daily and no joke I 100% believe the prayers and positivity I have going on around the world is part of the reason. This meditation CD help me keep my razor sharp focus and keeps me in the zone of ridding this uninvited guest called melanoma. I believe I will be cured. I really do! Keep up the good work in the vibe dept. because I def. am getting them. I'm a believer.
I'm sore from surgery, but that is to be expected. Do more bloodwork on Sunday as well as a repeat MRI. Then on Monday we meet on the medical side and discuss treatment. Most likely they will order a new CT scan before treatment begins and also pray that we find out about BRAF and that I am indeed BRAF+. Like I said before there are other options if I am not, but will would be great if I was.
ok, one battle over and now on to the next. One thing at time.
love you all,
Jen
Why I am lucky...The Gifts I see!
Being back as a member of the MDA team always brings me back to my first encounter with this beast. I'll do my best to take you back there with me, but obviously it will be abbreviated. Who am I kidding.... Abbreviated in a Jen kind of way....lol Bare with me as I ramble.
Cancer has been a part of our family since June 30, 2006. Everyone asks me how did you catch the original occurrence and the only thing I can tell people is I had a mole on my leg that I needed to start going around when I was shaving. It didn't look gross, it didn't look completely abnormal, it didn't hurt, wasn't oozing, I didn't feel or look sick, it was just slightly raised but the point I am making is it could have been easily over looked. I could have easily missed it and we got lucky that I didn't.
The only thing that saved me was my pediatrician's rec. when I was younger to start going to a dermatologist due to my skin color, the amount of moles, and eye color. I went religiously every year. When I started having to go around this particular mole, I made an appt to go have it checked. Even the dermatology office said, we don't think it is anything but we will send if off for testing just to be sure.
We were pretty new to Houston as we moved for Jeff's job less than a year prior. Jeff and I had just gotten engaged in April 2006, wedding plans in CA were under way in CA for 7-6-07 and I was teaching at a school here near Hobby Airport. Our lives were as full as they ever have been. I remember the moment of diagnosis so clearly. I was at a Teaching Training seminar June 30th at the Westin in the Galleria and my phone rang. It was the dermatologist. I needed to come in for an immediate wide local excision as the mole they took was malignant. I had CANCER!
The fact that we had just moved to Houston was yet another reminder that someone, something bigger, something better than me...My GOD! This same feeling holds true today. He was with me and has always been there to carry me along the way. What are the chances that I would get Melanoma and move to a place where the #1 Hospital/Research facility for Cancer was in our backyard? My doctors back home said they would have sent me here too. Litterally 10 miles away at the time. Serendipitous, but definitely no accident.
That is where my relationship with MDA began and what a journey it has been. I had 3 surgeries, one of them discovered a positive lymph node which led to a major surgery. I had a lymphdectomy. All my lymph nodes in my right leg were removed. This caused me to have many months of physical therapy at MDA. I had drainage tubes coming out of my legs and had to relearn how to This was to retrain the lymphatic system to move all the fluid out. I had drainage tubes coming out of my leg and so needed to learn how to manage lymphodema . I wear compression stockings and had to figure a new plan to exercise other than running.
This is where the perspective. Life is too short, live now, do it, embrace the moment BE. I underwent biological chemo (Interferon) which pretty much killed me and was def. not my friend. I am a fighter and don't give up and thought chemo was supposed to do that for you so I pushed through all the horrendous side effects. Probably pushed a bit too hard. That November, while injecting myself 3x a day having 104 fevers, I couldn't eat, lost 45 lbs, Jeff and I realized working wasn't going to work and HISD wasn't going to make it easy on me to financially continue treatment.
This is how I know I am the luckiest girl around. Jeff, my soul mate, my perfect puzzle piece, the most selfless man I know married me and let me know then that I wasn't going to have to do this alone. I pulled myself away from the bed, got dressed in sweats, on chemo, and we married Nov. 22, 2006 at the Justice of the Peace here in Houston. I was puking and all. I now could be taken care of on his insurance and we wouldn't have that stress. After all, we were essentially already married as we have known one another since 2002 and our official wedding was already being planned and date set. Well we made it to the celebration and what an emotion one it was. I was in the hospital for an infection the week before the ceremony. Also as a side note, I was in hair extensions because my hair was falling out. Man, has it been a ride.
At this point I now could quit teaching and focus on getting my body well. Much different then having no child and now. My desire to fight is even stronger now. My chemo experience was less than desirable as interferon shut down my thyroid and put me in a mental institution for nearly 5 1/2 weeks where I was catatonic, on heavy meds, hearing voices, paranoid, suicidal etc. All this time, my husband was there fighting with and for me and not giving up. He never left my side even when I didn't know who he was. It takes a real MAN, a special MAN to do this. Jeffrey is that guy. Remember we had just married Nov. 22nd and my thyroid crashed around Feb/March. Here is a guy that just got married and he's pretty much looking at his new bride in a vegetable/catatonic state not knowing if she will ever return to him. This is Jeff's story as much as it is mine. We still had the 7-6-07 nuptial ceremony planned but the whole time it was touch and go as to whether or not I was going to make it. We truly weren't sure. At my dress fitting they had to reorder me/rush me a knew dress because the orginal fitting before treatment was now huge. They ordered two sizes smaller because of all the weight that I lost. The only positive thing about interferon. We joke about going on the interferon diet. No thank you, and I'd rather lose it another way but boy did those pounds shed. I also had no energy so that isn't good either.
If it wasn't for his brother Colby coming down and Nat to convince the doctors that something was wrong I would prob. still be in the psychiatric ward. Makes you think about how many people stay in those places unnecessarily. I am lucky to have such advocates on my side. It was them that figured out what my condition was, not the doctors. The doctors just kept putting me on antispychotic drugs like haldol which pretty much trapped me in my own head. Makes you think...Know your body. It's so important. Colby and Jeff figured out that my thyroid crashed, not the doctors. Had to write it 2x because it is so shocking. I am forever indebted. We got me on the proper thyroid meds and I snapped out of it. All the while having Jeff there ALWAYS. Not many people get to see how there spouse will treat them for real in sickness and and health and I KNOW. I know the love of my life will be by my side during the elderly years and I would do the same for him. The bond we have is almost like having a crystal ball and nobody can take that away from me. Now that is a gift. What Jeff and I have goes beyond anything I can even put in words. I love you ALWAYS Jeffrey Dean and will always be with you just the same as you are for me.
Cancer does bring gifts....you just have to be willing to see them. All our the outpouring of love and support from everyone is another gift that I will always cherrish and be forever grateful for. As to everyone that donated, you are all beautiful angels. I can't thank you enough. I will personally thank you. In the meantime, I'm thanking you all. My story and my journey wouldn't be so powerful without such an audience. You guys rock!
Cancer has been a part of our family since June 30, 2006. Everyone asks me how did you catch the original occurrence and the only thing I can tell people is I had a mole on my leg that I needed to start going around when I was shaving. It didn't look gross, it didn't look completely abnormal, it didn't hurt, wasn't oozing, I didn't feel or look sick, it was just slightly raised but the point I am making is it could have been easily over looked. I could have easily missed it and we got lucky that I didn't.
The only thing that saved me was my pediatrician's rec. when I was younger to start going to a dermatologist due to my skin color, the amount of moles, and eye color. I went religiously every year. When I started having to go around this particular mole, I made an appt to go have it checked. Even the dermatology office said, we don't think it is anything but we will send if off for testing just to be sure.
We were pretty new to Houston as we moved for Jeff's job less than a year prior. Jeff and I had just gotten engaged in April 2006, wedding plans in CA were under way in CA for 7-6-07 and I was teaching at a school here near Hobby Airport. Our lives were as full as they ever have been. I remember the moment of diagnosis so clearly. I was at a Teaching Training seminar June 30th at the Westin in the Galleria and my phone rang. It was the dermatologist. I needed to come in for an immediate wide local excision as the mole they took was malignant. I had CANCER!
The fact that we had just moved to Houston was yet another reminder that someone, something bigger, something better than me...My GOD! This same feeling holds true today. He was with me and has always been there to carry me along the way. What are the chances that I would get Melanoma and move to a place where the #1 Hospital/Research facility for Cancer was in our backyard? My doctors back home said they would have sent me here too. Litterally 10 miles away at the time. Serendipitous, but definitely no accident.
That is where my relationship with MDA began and what a journey it has been. I had 3 surgeries, one of them discovered a positive lymph node which led to a major surgery. I had a lymphdectomy. All my lymph nodes in my right leg were removed. This caused me to have many months of physical therapy at MDA. I had drainage tubes coming out of my legs and had to relearn how to This was to retrain the lymphatic system to move all the fluid out. I had drainage tubes coming out of my leg and so needed to learn how to manage lymphodema . I wear compression stockings and had to figure a new plan to exercise other than running.
This is where the perspective. Life is too short, live now, do it, embrace the moment BE. I underwent biological chemo (Interferon) which pretty much killed me and was def. not my friend. I am a fighter and don't give up and thought chemo was supposed to do that for you so I pushed through all the horrendous side effects. Probably pushed a bit too hard. That November, while injecting myself 3x a day having 104 fevers, I couldn't eat, lost 45 lbs, Jeff and I realized working wasn't going to work and HISD wasn't going to make it easy on me to financially continue treatment.
This is how I know I am the luckiest girl around. Jeff, my soul mate, my perfect puzzle piece, the most selfless man I know married me and let me know then that I wasn't going to have to do this alone. I pulled myself away from the bed, got dressed in sweats, on chemo, and we married Nov. 22, 2006 at the Justice of the Peace here in Houston. I was puking and all. I now could be taken care of on his insurance and we wouldn't have that stress. After all, we were essentially already married as we have known one another since 2002 and our official wedding was already being planned and date set. Well we made it to the celebration and what an emotion one it was. I was in the hospital for an infection the week before the ceremony. Also as a side note, I was in hair extensions because my hair was falling out. Man, has it been a ride.
At this point I now could quit teaching and focus on getting my body well. Much different then having no child and now. My desire to fight is even stronger now. My chemo experience was less than desirable as interferon shut down my thyroid and put me in a mental institution for nearly 5 1/2 weeks where I was catatonic, on heavy meds, hearing voices, paranoid, suicidal etc. All this time, my husband was there fighting with and for me and not giving up. He never left my side even when I didn't know who he was. It takes a real MAN, a special MAN to do this. Jeffrey is that guy. Remember we had just married Nov. 22nd and my thyroid crashed around Feb/March. Here is a guy that just got married and he's pretty much looking at his new bride in a vegetable/catatonic state not knowing if she will ever return to him. This is Jeff's story as much as it is mine. We still had the 7-6-07 nuptial ceremony planned but the whole time it was touch and go as to whether or not I was going to make it. We truly weren't sure. At my dress fitting they had to reorder me/rush me a knew dress because the orginal fitting before treatment was now huge. They ordered two sizes smaller because of all the weight that I lost. The only positive thing about interferon. We joke about going on the interferon diet. No thank you, and I'd rather lose it another way but boy did those pounds shed. I also had no energy so that isn't good either.
If it wasn't for his brother Colby coming down and Nat to convince the doctors that something was wrong I would prob. still be in the psychiatric ward. Makes you think about how many people stay in those places unnecessarily. I am lucky to have such advocates on my side. It was them that figured out what my condition was, not the doctors. The doctors just kept putting me on antispychotic drugs like haldol which pretty much trapped me in my own head. Makes you think...Know your body. It's so important. Colby and Jeff figured out that my thyroid crashed, not the doctors. Had to write it 2x because it is so shocking. I am forever indebted. We got me on the proper thyroid meds and I snapped out of it. All the while having Jeff there ALWAYS. Not many people get to see how there spouse will treat them for real in sickness and and health and I KNOW. I know the love of my life will be by my side during the elderly years and I would do the same for him. The bond we have is almost like having a crystal ball and nobody can take that away from me. Now that is a gift. What Jeff and I have goes beyond anything I can even put in words. I love you ALWAYS Jeffrey Dean and will always be with you just the same as you are for me.
Cancer does bring gifts....you just have to be willing to see them. All our the outpouring of love and support from everyone is another gift that I will always cherrish and be forever grateful for. As to everyone that donated, you are all beautiful angels. I can't thank you enough. I will personally thank you. In the meantime, I'm thanking you all. My story and my journey wouldn't be so powerful without such an audience. You guys rock!
Thursday, August 11, 2011
Surgery Tom: 1:30 pm check in!
I feel empowered to tell my story and take you on this journey with me. Thanks for coming. Prayers and positivity welcome tom. especially while I take the first step rid myself of this beast. It will be a ride. See you all with me tom. at 1:30 and all day like you have been lifting me up and giving me strength. I am truly touched by the emails from everyone and need to tell you that it is YOU guys that inspire me :)
My Babies are With Me...All of Them...
So, this world is full of so many doors opening and closing that sometimes when a door shuts there is so much confusion as to how that could have possibly been the outcome that the next one opening is never seen. There have been many of those instances in my life and for the most part, I strive to take the disappointment on the chin and be open and aware and not so closed off that I miss the door opening right in front of me. This holds true in this experience as well. Kind of goes along with the theme things happen for a reason. Everything just makes more sense if we can attach a reason doesn't it?
Jeff and I have been trying to give Zach a sibling since he was about 15 months old. Some of you know and others don't, but in that time period to now I have had 3 miscarriages. All very traumatic, but this last one was really hard considering I was nearly 20 weeks at the time of the loss and it was very recent. I had my re-occurrence of Melanoma April of this year. During this time I was pregnant and because of my previous two miscarriages we were being monitored extremely closely. All looked good well past 14 weeks. We were flying high as we truly felt like this one was for real.
I then discovered a lump in my leg in April. It was Easter weekend to be exact. We found out it was malignant and planned on surgery to remove the lump while being monitored by a maternal fetal specialist. I was in full maternity clothes, felt the baby moving and was very connected. Surgery for the melanoma was sched. for May 11th which was a wed. The Friday before my surgery I had an ultrasound where we discovered that the kidneys were not formed and the baby was given a lethal diagnosis. Devastating is an understatement. Without the kidneys working, the baby couldn't produce urine which is what the fetus drinks which in turn develops the lungs. No kidney formation = No amniotic fluid (produced by the urine output) = No lung dev. and therefore, the baby could not survive. I lost the baby just shy of 20 weeks and had the surgery to remove the fetus exactly 1 week after the removal of the 1st tumor.
Now that I wasn't pregnant this led me down the path of getting my scans done. Went in for the full workup...CT/MRI etc. all the things I couldn't do while pregnant. This was just in May of this year and my scans came back CLEAR. No signs of any metastasis. This is why you should always know your body. Melanoma is such a fast attacking monster. From May 30th when my scans were clear to July when I noticed a funny bump on my scarline I went from nothing to it being everywhere in my body. Stage 4. I HONESTLY believe my child sacrificed itself in order for me to fight for mine. I would have been due Oct. 16th. So, of course I'm motivated to fight. I have good reason. I have my angels with me and 1 here, named Zachary that told me today that he was on my team. The TEAM to get the Cancer out of mommy's body. Of course I have to win this battle. Of course I'm going to give it my everything. Wouldn't you...Every mom knows the answer to that. Of course you would.
This loss this time tore me apart. I just didn't understand why having a sibling for Zachary seemed so out of reach? I was the one that wanted a mini preschool and it just didn't seem fair or right or to make sense. I was hurt, lost, frustrated, and angry. Everything is so clear now....
I now have my answer and I know deep down, that those 3 precious babies are with me now. They are there giving my the strength to fight. I may not be able to touch them physically, but let me tell you...They are with me! I feel like my precious angel who is now in Heaven died in order to give me a shot at surviving. I won't disappoint.
Love to you all,
Jen
Jeff and I have been trying to give Zach a sibling since he was about 15 months old. Some of you know and others don't, but in that time period to now I have had 3 miscarriages. All very traumatic, but this last one was really hard considering I was nearly 20 weeks at the time of the loss and it was very recent. I had my re-occurrence of Melanoma April of this year. During this time I was pregnant and because of my previous two miscarriages we were being monitored extremely closely. All looked good well past 14 weeks. We were flying high as we truly felt like this one was for real.
I then discovered a lump in my leg in April. It was Easter weekend to be exact. We found out it was malignant and planned on surgery to remove the lump while being monitored by a maternal fetal specialist. I was in full maternity clothes, felt the baby moving and was very connected. Surgery for the melanoma was sched. for May 11th which was a wed. The Friday before my surgery I had an ultrasound where we discovered that the kidneys were not formed and the baby was given a lethal diagnosis. Devastating is an understatement. Without the kidneys working, the baby couldn't produce urine which is what the fetus drinks which in turn develops the lungs. No kidney formation = No amniotic fluid (produced by the urine output) = No lung dev. and therefore, the baby could not survive. I lost the baby just shy of 20 weeks and had the surgery to remove the fetus exactly 1 week after the removal of the 1st tumor.
Now that I wasn't pregnant this led me down the path of getting my scans done. Went in for the full workup...CT/MRI etc. all the things I couldn't do while pregnant. This was just in May of this year and my scans came back CLEAR. No signs of any metastasis. This is why you should always know your body. Melanoma is such a fast attacking monster. From May 30th when my scans were clear to July when I noticed a funny bump on my scarline I went from nothing to it being everywhere in my body. Stage 4. I HONESTLY believe my child sacrificed itself in order for me to fight for mine. I would have been due Oct. 16th. So, of course I'm motivated to fight. I have good reason. I have my angels with me and 1 here, named Zachary that told me today that he was on my team. The TEAM to get the Cancer out of mommy's body. Of course I have to win this battle. Of course I'm going to give it my everything. Wouldn't you...Every mom knows the answer to that. Of course you would.
This loss this time tore me apart. I just didn't understand why having a sibling for Zachary seemed so out of reach? I was the one that wanted a mini preschool and it just didn't seem fair or right or to make sense. I was hurt, lost, frustrated, and angry. Everything is so clear now....
I now have my answer and I know deep down, that those 3 precious babies are with me now. They are there giving my the strength to fight. I may not be able to touch them physically, but let me tell you...They are with me! I feel like my precious angel who is now in Heaven died in order to give me a shot at surviving. I won't disappoint.
Love to you all,
Jen
Tuesday, August 9, 2011
Manifesting Positivity, manifesting my Life...BELIEVING~here we go!
So, here's the daunting diagnosis...The melonoma is essentially everywhere. It is in both breasts with the right side being larger, both lungs, the liver, small bowel, and bones. The bones showing metastasis are T7, the 4th rib, and left sacrum. Anyone given this challenge would look at it and freak out and yes there was time for this. Time has been allowed for the tears, the talks of preparation, the confusion, frustration, anger, and just all of it.
Then something came over me and I realize that life is too precious to fight something that I cannot change and so instead, I have decided to of course pray, but more than that. I have decided to believe, I have decided to be a miracle, I have decided to manifest positivity, and manifest my life. I kind of get excited...I know, I'm weird, but really excited. If you know me, kind of that teaching little ones how to read kind of excited....grin! Not excited to have melonoma of course, but excited to be a catalyst in promoting positive change. I want to see good in people and good in this world and through all of this I AM!
I realize that all any of us have is 12 hours really. None of us know when our time will be up? We take our life in our own hands daily just by walking across the street. If I look at it differently, I realize that the cards I have been given truly are gifts. Why? you might say...mainly because most people live their lives holding back, or saving things for a more important time, safe, with the fear of what if. The way I think and really always have is what a better time than now? It's about doing/being authentic/letting the petty meaningless stuff go and living with no regrets. I have decided to manifest my life and the goals and positivity that I see in it. Why not?
I'm blown away by the support from people in my life that I have now, have been blessed to know but somehow lost touch, and quite frankly by the support of people I have yet to meet. You all are here with me and here for a reason. I can't thank you enough. I feel the love from Elementary school friends, friends from the church I went to growing up, skating friends, friends from Middle School, High school, UCSD, and geez my sorority. I cannot believe the love I have felt by this radiant group of women in such a short amount of time. I would have never guessed a sorority at 35 years old could bring me so much joy :-) And then there is the present people in my life, my forevers from playgroup, my neighborhood and just so many inspiring, take charge people that I admire I can't even begin to tell you how much your support motivates me to SPARKLE even more. As for my neighborhood, in jut one year of living here I want all of them to know how blessed I feel to know all of you. Jeff and I both feel like our house landed upon OZ and we are in munchkin land with wonderfulness all around us.
This whole phenomenon has inspired me to be an example. It has inspired me to be the person I want to be fully and completely. I want to be better than melonoma. I AM...I have a story to tell, I want to help others. My heart has always been a teacher and my soul wants more than ever to TEACH right now.
Friday I know you will all be with me. The plan is to have surgery to remove two tumors. One from my breast, and the other on my panty line. What we specifically can pray for is that once these tumors are out of me, they grow in the lab. They grow T-cells used to fight the tumor and eventually will be put back in my body. The waiting game has been just to make sure that I qualify for every treatment option there is on the table. Friday is surgery, Sunday more bloodwork, and another MRI, then monday we meet with the medical side and hopefully get a plan and date to begin treatment. We are still praying that I am BRAF+.....Think and pray for me that I am BRAF + That would be amazing, but it isn't the say all end on in the hope dept. I AM GOING TO DO THIS AND ALL OF YOU WILL BE WITH ME BY MY SIDE WHILE IT'S HAPPENING. This is a beautiful thing and I love you all!
Then something came over me and I realize that life is too precious to fight something that I cannot change and so instead, I have decided to of course pray, but more than that. I have decided to believe, I have decided to be a miracle, I have decided to manifest positivity, and manifest my life. I kind of get excited...I know, I'm weird, but really excited. If you know me, kind of that teaching little ones how to read kind of excited....grin! Not excited to have melonoma of course, but excited to be a catalyst in promoting positive change. I want to see good in people and good in this world and through all of this I AM!
I realize that all any of us have is 12 hours really. None of us know when our time will be up? We take our life in our own hands daily just by walking across the street. If I look at it differently, I realize that the cards I have been given truly are gifts. Why? you might say...mainly because most people live their lives holding back, or saving things for a more important time, safe, with the fear of what if. The way I think and really always have is what a better time than now? It's about doing/being authentic/letting the petty meaningless stuff go and living with no regrets. I have decided to manifest my life and the goals and positivity that I see in it. Why not?
I'm blown away by the support from people in my life that I have now, have been blessed to know but somehow lost touch, and quite frankly by the support of people I have yet to meet. You all are here with me and here for a reason. I can't thank you enough. I feel the love from Elementary school friends, friends from the church I went to growing up, skating friends, friends from Middle School, High school, UCSD, and geez my sorority. I cannot believe the love I have felt by this radiant group of women in such a short amount of time. I would have never guessed a sorority at 35 years old could bring me so much joy :-) And then there is the present people in my life, my forevers from playgroup, my neighborhood and just so many inspiring, take charge people that I admire I can't even begin to tell you how much your support motivates me to SPARKLE even more. As for my neighborhood, in jut one year of living here I want all of them to know how blessed I feel to know all of you. Jeff and I both feel like our house landed upon OZ and we are in munchkin land with wonderfulness all around us.
This whole phenomenon has inspired me to be an example. It has inspired me to be the person I want to be fully and completely. I want to be better than melonoma. I AM...I have a story to tell, I want to help others. My heart has always been a teacher and my soul wants more than ever to TEACH right now.
Friday I know you will all be with me. The plan is to have surgery to remove two tumors. One from my breast, and the other on my panty line. What we specifically can pray for is that once these tumors are out of me, they grow in the lab. They grow T-cells used to fight the tumor and eventually will be put back in my body. The waiting game has been just to make sure that I qualify for every treatment option there is on the table. Friday is surgery, Sunday more bloodwork, and another MRI, then monday we meet with the medical side and hopefully get a plan and date to begin treatment. We are still praying that I am BRAF+.....Think and pray for me that I am BRAF + That would be amazing, but it isn't the say all end on in the hope dept. I AM GOING TO DO THIS AND ALL OF YOU WILL BE WITH ME BY MY SIDE WHILE IT'S HAPPENING. This is a beautiful thing and I love you all!
Sunday, August 7, 2011
What can we do? Sometimes, I just don't know how to answer that simple question...
Hi there,
In all this time where my illness turned from Stage 3 under control melonoma to this Stage 4 label, psychologically it has been incredibly difficult not only to comprehend, but also difficult to clearly articulate what I need. The bottom line is I don't know. Part of me has this strong desire to want to do everything while I can and another side talking convinces me that I should welcome the help. I'm so conflicted because taking over the day to day stuff and Zachary stuff makes me feel like my life is being taken over and I don't like that feeling even though I know it's coming from a helpful place. I really just wish I could get my "normal" back because I love doing it. I was hit with some of these emotions today and I just lost it.
When you look at me, I still don't look sick even though I may be in pain etc. It's hard for me to be such an insightful person and feel the unsureness and helplessness in people as they talk to me now with the Stage 4 diagnosis. I wish I could just go back to being "Jen". Illness is complicated. Something without warning can hit me in a second. I'm trying really hard to just be authentic with everyone and myself but it is so hard being in this position rather than the one giving the support.
We all know the realities of what we read, but also know the realities of not excepting that and accepting something bigger and better. I obviously march to the beat in my life to the latter, but there are times when my emotions take over and those statistics and realities become so real it's hard to not feel the need to prepare. I also don't want to spend my life preparing and want to live fully. See, I'm complicated...lol Today those realities came and they just came unexpectedly. There is so much change in our world at the moment and trying to do everything in my power to just BE and not think is the greatest challenge.
On a wonderful note, it is great to hang out with a long time friend that just knows me. One thing for sure is I am blessed to have wonderfulness in my life. I have gotten a lot of that wonderfulness from my friend Heather's visit this weekend. We laughed, have been silly, looked at pictures, played with Z, and it's nice to have that comfortableness to just say, can you leave for a bit, I just want to be alone. It's been great. Friday I had a ton of pain and ever since Friday night, the pain hasn't gone completely away but it's been lifted almost like a miracle... It made me think, why can't this be my miracle...Why not? Not sure if it's the advil they told me to take, having positive distractions, or a combo of both but really a noticeable difference. Life without that pain I felt on friday is awesome! I'll hopefully know more about my road ahead on tues. What would be the best music to my ears when I head to the dr. would be....WOW, what a miracle Jen you are cured! That's the kind of miracle I wish I could will myself into having. I wish I didn't carry around this heavy label. Too much living left to do.
As I leave you tonight I leave with these inspirational words:
There comes a time in your life when you realize that if you stand still, you will remain at this point forever. You realize that if you fall and stay down life will pass you by.
Life's circumstances are not always what you might wish them to be. The pattern of life does not necessarily go as you plan. Beyond any understanding, you may at times be led in different directions that you never imagined, dreamed , or designed. Yet if you had never put any effort into choosing a path or tried to carry out your dream, then perhaps you would have no direction at all.
Rather than wondering about or questioning the direction your life has taken, accept the fact that there is a path before you now. Shake off the "whys" and "what ifs", and rid yourself of confusion. Whatever was---is in the past. Whatever is---is what's important. The past is a brief reflection. The future is yet to be realized. Today is here.
Walk your path one step at a time---with courage, faith, and determination. Keep your head up and cast your dreams to the stars. Soon your steps will become firm and your footing will be solid again. A path that you never imagined will become the most comfortable direction you could have ever hoped to follow.
Keep your belief in yourself and walk into your knew journey. You will find magnificent, spectacular, and beyond your wildest imaginings.
----- Vicki Silvers
In all this time where my illness turned from Stage 3 under control melonoma to this Stage 4 label, psychologically it has been incredibly difficult not only to comprehend, but also difficult to clearly articulate what I need. The bottom line is I don't know. Part of me has this strong desire to want to do everything while I can and another side talking convinces me that I should welcome the help. I'm so conflicted because taking over the day to day stuff and Zachary stuff makes me feel like my life is being taken over and I don't like that feeling even though I know it's coming from a helpful place. I really just wish I could get my "normal" back because I love doing it. I was hit with some of these emotions today and I just lost it.
When you look at me, I still don't look sick even though I may be in pain etc. It's hard for me to be such an insightful person and feel the unsureness and helplessness in people as they talk to me now with the Stage 4 diagnosis. I wish I could just go back to being "Jen". Illness is complicated. Something without warning can hit me in a second. I'm trying really hard to just be authentic with everyone and myself but it is so hard being in this position rather than the one giving the support.
We all know the realities of what we read, but also know the realities of not excepting that and accepting something bigger and better. I obviously march to the beat in my life to the latter, but there are times when my emotions take over and those statistics and realities become so real it's hard to not feel the need to prepare. I also don't want to spend my life preparing and want to live fully. See, I'm complicated...lol Today those realities came and they just came unexpectedly. There is so much change in our world at the moment and trying to do everything in my power to just BE and not think is the greatest challenge.
On a wonderful note, it is great to hang out with a long time friend that just knows me. One thing for sure is I am blessed to have wonderfulness in my life. I have gotten a lot of that wonderfulness from my friend Heather's visit this weekend. We laughed, have been silly, looked at pictures, played with Z, and it's nice to have that comfortableness to just say, can you leave for a bit, I just want to be alone. It's been great. Friday I had a ton of pain and ever since Friday night, the pain hasn't gone completely away but it's been lifted almost like a miracle... It made me think, why can't this be my miracle...Why not? Not sure if it's the advil they told me to take, having positive distractions, or a combo of both but really a noticeable difference. Life without that pain I felt on friday is awesome! I'll hopefully know more about my road ahead on tues. What would be the best music to my ears when I head to the dr. would be....WOW, what a miracle Jen you are cured! That's the kind of miracle I wish I could will myself into having. I wish I didn't carry around this heavy label. Too much living left to do.
As I leave you tonight I leave with these inspirational words:
There comes a time in your life when you realize that if you stand still, you will remain at this point forever. You realize that if you fall and stay down life will pass you by.
Life's circumstances are not always what you might wish them to be. The pattern of life does not necessarily go as you plan. Beyond any understanding, you may at times be led in different directions that you never imagined, dreamed , or designed. Yet if you had never put any effort into choosing a path or tried to carry out your dream, then perhaps you would have no direction at all.
Rather than wondering about or questioning the direction your life has taken, accept the fact that there is a path before you now. Shake off the "whys" and "what ifs", and rid yourself of confusion. Whatever was---is in the past. Whatever is---is what's important. The past is a brief reflection. The future is yet to be realized. Today is here.
Walk your path one step at a time---with courage, faith, and determination. Keep your head up and cast your dreams to the stars. Soon your steps will become firm and your footing will be solid again. A path that you never imagined will become the most comfortable direction you could have ever hoped to follow.
Keep your belief in yourself and walk into your knew journey. You will find magnificent, spectacular, and beyond your wildest imaginings.
----- Vicki Silvers
Wednesday, August 3, 2011
Didn't you know? Now is such an exciting time for Melonoma!
So, the title of this gives me such a chuckle as after days of hounding MDA for results and a vision as to what my prognosis/treatment plan looks like, I finally feel like I'm making some progress. I got this lady on the phone today that at least gave me a sneak peak that I was indeed a priority and I was indeed being talked about in treatment discussions and they were talking about a plan to best get this monster out of me. She had such a calm voice and made me feel like I was joining the Main Street Electrical Parade at Disney instead of intense chemotherapy at MD Anderson. ha! Straight out of her mouth were the words: "You know, now is such an exciting time for Melonoma" I know you all are thinking....Lucky me, eh? Her voice was so calm that I felt like she was telling me I got a job offer with a wonderful pension plan or something. Now, I am excited to hear that it's a great time for melonoma, but come on, really? I could really do without that word ever entering my vocabulary again. I am looking this beast directly for the second time. Go away...I assure you, my inner beast is stronger and yes I am glad I have options.
So here is the skinny of what she told me they were thinking of my path to rid myself of this beast.
1. I will have surgery to biopsy one of my new tumors. That tumor will then go into a TIL HARVEST (tumor infiltration lymphocytes) which essentially will teach my good white cells how to attack the bad melonoma. My understanding at least, I'm still learning and processing
2. Then I head to the hospital for 7days of intense chemo and a very powerful cocktail. Normally they do a combination of 4 chemo drugs and 1 immunotherapy drug. I will only be taking 3 chemo drugs because the 4th one is interferon and well lets face it....it was nearly deadly to me last time. I did ask her if I am only doing 3 of the drugs if it will lesson it's effectiveness and she said my case was well looked at and not with all this other stuff they would be doing. My body will be going through a lot.
The 3 chemo drugs are: 1. cisplatine 2. Decarbezine 3. Velvan (I could be completely wrong in the spelling of these as this was a verbal conversation over the phone. Not sure if it's given in IV or a pill)
The one imunotherapy drug I will be given is 1. Interlukin-2
5 of those 7 days will be intense chemo everyday and the 2 days will be getting my body ready to go home. 7 days in the hospital, then 2 weeks at home. I will then go back into the hospital for 7 days to do it all over again. After two sessions meaning 1 month and 1/2 total time, I will get resccanned and we can pray there is tumor shrinkage. Some patients have no response and some get a complete recovery but not very many. 40-60% of patients show some signs of shrinkage and if that is the case I will keep doing that cycle over and over again.
After all this, the TIL cells from my biopsy that were given a chance to grow will be given to me to hopefully reprogram the melonoma. This is all my understanding thus far. I am supposed to hear back by friday as to time tables of all this. In the meantime just trying do the best to manage pain and deal with the fact that I have shortness of breath. I still can't wrap my head around the fact that this melonoma monster came so fast...It's hard to comprehend, but as fast as it came, I determined to get it out that much faster no matter what it takes. Somewhere in all this is also radiation. YUP, because it's in the bones I will need radiation. I wasn't messing around when I ordered this all inclusive package I tell ya. Keep the prayers coming and I will do my part on fighting with my heart, my soul, my everything. I can see Zachary Graduating College, I can see his wedding day, I can see many wonderful travels and adventures for our family. Love to you all. Biggest fight of my life....Thanks for cheering me on! Let's WIN!
Much Love,
Jen
So here is the skinny of what she told me they were thinking of my path to rid myself of this beast.
1. I will have surgery to biopsy one of my new tumors. That tumor will then go into a TIL HARVEST (tumor infiltration lymphocytes) which essentially will teach my good white cells how to attack the bad melonoma. My understanding at least, I'm still learning and processing
2. Then I head to the hospital for 7days of intense chemo and a very powerful cocktail. Normally they do a combination of 4 chemo drugs and 1 immunotherapy drug. I will only be taking 3 chemo drugs because the 4th one is interferon and well lets face it....it was nearly deadly to me last time. I did ask her if I am only doing 3 of the drugs if it will lesson it's effectiveness and she said my case was well looked at and not with all this other stuff they would be doing. My body will be going through a lot.
The 3 chemo drugs are: 1. cisplatine 2. Decarbezine 3. Velvan (I could be completely wrong in the spelling of these as this was a verbal conversation over the phone. Not sure if it's given in IV or a pill)
The one imunotherapy drug I will be given is 1. Interlukin-2
5 of those 7 days will be intense chemo everyday and the 2 days will be getting my body ready to go home. 7 days in the hospital, then 2 weeks at home. I will then go back into the hospital for 7 days to do it all over again. After two sessions meaning 1 month and 1/2 total time, I will get resccanned and we can pray there is tumor shrinkage. Some patients have no response and some get a complete recovery but not very many. 40-60% of patients show some signs of shrinkage and if that is the case I will keep doing that cycle over and over again.
After all this, the TIL cells from my biopsy that were given a chance to grow will be given to me to hopefully reprogram the melonoma. This is all my understanding thus far. I am supposed to hear back by friday as to time tables of all this. In the meantime just trying do the best to manage pain and deal with the fact that I have shortness of breath. I still can't wrap my head around the fact that this melonoma monster came so fast...It's hard to comprehend, but as fast as it came, I determined to get it out that much faster no matter what it takes. Somewhere in all this is also radiation. YUP, because it's in the bones I will need radiation. I wasn't messing around when I ordered this all inclusive package I tell ya. Keep the prayers coming and I will do my part on fighting with my heart, my soul, my everything. I can see Zachary Graduating College, I can see his wedding day, I can see many wonderful travels and adventures for our family. Love to you all. Biggest fight of my life....Thanks for cheering me on! Let's WIN!
Much Love,
Jen
Welcome to Jen's Blog
Dear family and friends, We all have one thing in common- we all love Jen and we all want to see her win this battle (ok, that's 2 things). I know she can do it. I know this because I know Jen. I met Jen in 1995 at UCSD. Jen and I became sorority sisters in Alpha Chi Omega. I will never forget her big smile and big personality as she came through rush week. She made me feel happy just being around her. I know Jen will win this battle because when Jen puts her mind to something, she doesn't quit until it is her way. In fact, if you tell Jen she can't do something, she wants it so much more. I remember when Jen moved into one of the rooms in our apartment. She had so many boxes and stuff- like nothing I have ever seen. I told her it would take her days to unpack. She looked at me with that Jen look and emphatically said she would be done by bedtime. And she was. Her room was put together with precision and detail - pictures hung and clothes put away perfectly. Jen is perfectly stubborn and determined in ways that are admirable. I love you Jen. xoxo
Many people have expressed their desire to help. Casey Elford, a fellow Alpha Chi Omega sister, came up with the great idea to set-up a fundraiser for the Christie family. The money will be used for a house cleaning service, meal delivery, and anything else Jeff and Jen need. Please use the "donate" button in the upper right. I will keep you updated on how we are doing.
I would also like to add a slideshow to the blog. If you have a favorite picture of you and Jen, please send to my email address- heatherberg@mac.com.
Lastly, please check back often for new pictures and fundraising updates. As Jen feels up to it, she will be doing some blogging herself.
Prayers and positive thoughts, Heather Berg
Many people have expressed their desire to help. Casey Elford, a fellow Alpha Chi Omega sister, came up with the great idea to set-up a fundraiser for the Christie family. The money will be used for a house cleaning service, meal delivery, and anything else Jeff and Jen need. Please use the "donate" button in the upper right. I will keep you updated on how we are doing.
I would also like to add a slideshow to the blog. If you have a favorite picture of you and Jen, please send to my email address- heatherberg@mac.com.
Lastly, please check back often for new pictures and fundraising updates. As Jen feels up to it, she will be doing some blogging herself.
Prayers and positive thoughts, Heather Berg
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