So, I am way past due on updating my blog, and a lot has happened since my last post. The amazing trial I was so excited to be part of turned out to not work for me. 2 weeks ago my scans showed small amounts of growth in my tumors, but Dr Z couldn't be sure of the growth was before or after I started the new chemo, so I was to continue with the chemo for 2 more weeks & then re-scan.
During that 2 weeks, I became very sick. I had terrible stomach cramps that doubled me over in pain and I was constantly nauseous. I could barely eat or drink anything. I ended up in the ER on December 7 for the pain and for dehydration. Dr Z decided then to have me hold my chemo meds until I came down to Texas to see him (about a week). Once I stopped the meds, my stomach issues went away almost immediately.
This trip my dad came down with me. I had my scans on Thursday, and when we met with Dr Z yesterday he told me the trial was not working. All of my current tumors have gotten larger, my lymph nodes are larger and I have some new tumors that have popped up. So, I have dropped out of what I believed was going to be my miracle trial. Now I am not discouraged, I still believe I will get my miracle, I just may have to wait a little while longer.
What's the plan now? I am going to be doing a more standard chemo regimen, not a trial. I have had 2 of the 3 drugs I am going to get before. One is carboplatin, which I had last spring and we know has an effect on my cancer. Dr Z's current thought is that by doing a treatment we know will have a positive effect we can improve my status and then try another trial later on, rather than try another trial now and possibly let my cancer continue to get worse if it doesn't work. I completely agree.
One awesome thing about going with just a general chemo treatment is that I will be able to receive it in OHIO! I will still be under Dr Z's care and will have to come back to Texas every 4 weeks or so for scans and a check-up, but will spend most of my time at HOME! I am incredibly excited about that!
So tomorrow I say good-bye to my Houston apartment when we leave for the airport and I won't be returning to it :o) It has been great spending time with my dad this trip and I'm glad he was able to come. I think it may be a battle from now on who gets to come with me...its like a mini vacation for my family members...haha!
Saturday, December 17, 2011
Tuesday, November 15, 2011
A Timeline (Part 3)
Here's the final wrap up of the last year...
June 2011
*June was blissfully uneventful for the most part :o) I was watching the kids again and was even doing the things I had missed around the house. Julianna and I went berry picking and canned homemade jam. We spent some weekends at the camper. And life was good!
July 2011
*July 4th weekend, we went to the camper and had both our families over for a picnic. It was then that my back pain returned with major vengeance. I was in almost as much pain as I had been 9 months previously. I could barely walk or move.
*Dr H scheduled me for another long MRI (4 hours!), this time including scans of my pelvis. He put me back on pain meds until the results came back, but they didn't seem to help much. A few days later when I met with him he gave me the news that there was a fairly large tumor in my pelvis and it was pushing on my sciatic nerve (finally a source for my pain!). I was scheduled to see a surgeon for a consult.
*I met with Dr L (the surgeon) on Monday, July 18 and after seeing my pain and looking at my scans, he scheduled me to have surgery just 3 days later! I was so thankful for him being able to get me in so quickly. The day before my surgery, I was in so much pain I pretty much just layed on my parents couch crying all day and counting down the minutes between pain meds.
*July 21, I had surgery to remove the tumor from my pelvis. Basically, they cut clear through the left side of my rear end to get to it. I would go through 10 c-sections again before I would ever want to have the surgery to remove that tumor again. It was an extremely painful recovery. I spent 5 days in the Clinic recovering & then was transferred to a rehab facility.
*While in the rehab facility, I was the youngest resident by at least 50 years...haha! I had 30 minutes of physical therapy each day. By day 3 I had decided it was silly for me to be there and I was ready to come home. I was told I could go home the next morning :o) Unfortunately, Joe got a call from Dr H shortly after that and we received the news that I had multiple new tumors show up in my last scan and that my cancer was again getting worse. I was so upset I didn't give anyone a chance to keep me there. I told them I was going home right then. I hadn't seen my kids in over a week and I just wanted to be home with my family. I was discharged within 30 minutes.
August 2011
*I spent August trying to recover from my surgery (it was awful!) and starting radiation therapy on the parts of the tumor that could not be removed. Joe also got things rolling on getting a second opinion on my treatment at MD Anderson.
*August 25, I started having back pain again. This time I had a large knot on my back that was causing the pain. It felt like a really tight muscle knot and when it was rubbed it would ease a little. After some completely sleepless nights Dr H ordered another MRI of my back. This one showed I had a new tumor next to my spine and that my cancer was spreading quite quickly up my spine. So radiation to my back was added to what I was already getting on my pelvis.
*By the end of the month things were all set for Joe and I to travel to Houston, Texas to get my second opinion at MD Anderson the beginning of September.
September 2011
*I finished radiation therapy on Sept. 7 and Joe & I flew to Texas on Sept. 8th. September 9th, I met Dr Z for the first time. We instantly liked him and were really excited about everything he had to tell us.
*After lots of testing, Dr Z decided on a trial for me and things moved pretty quickly. We had to get an apartment, my parents flew down to help out, and I sadly wasn't able to return to Ohio to spend time with the kiddos. I started chemo and thanks to the steroids I got as a premeds I started feeling amazingly better!
*During all this time, a few things were discovered about my eyes. It is thought that I have carcinoma related retinopathy, BUT Dr S is so unclear about things that we still aren't exactly sure what is going on with my eyes.
October 2011
*I continued with chemo during October & dealt with periods of my severe back pain. We still don't know what is causing the back pain, but it seems to always be the worst at night, and so far the only thing that helps it is steroids, which none of the doctors want me to be on.
*Joe and Erin brought the kids out to see me for a week and I couldn't have been a happier! We took the kids to the zoo, and shopping, and we just had a wonderful time. Watching them leave for the airport was so hard.
*October 21, I met with Dr Z to go over the most recent scans & I learned that the trial I was on was not working. The cancer was still slowly growing. I was scheduled for an appointment the following week to find out a new plan of attack.
*October 25, I was put into a new trial and just a few hours later my mom & I were on a plane back to Ohio for a short trip. It was so nice to be home! It was even nicer to see Julianna's face when she woke up the next morning and found mommy was not in Texas!
*Here's where my miracles really start rolling in. A few days later, on October 26, Dr Z called Joe and told him they were 99% sure they now had found the primary source of my cancer. I am now diagnosed pancreatic neuroendocrine tumors (PNET). The good thing about that is that there is a specific treatment for it! Even better was that a trial just for PNET opened that day and I was accepted! And it included that new chemo drug that had been approved in May! This drug (everolimus) has an 86% success rate at reducing the size of PNET tumors and a high percentage of patients reach remission very quickly. I was thrilled!
November 2011
*Erin & I flew back to Texas and I started my new trial on November 4th. I love that this chemo is all pill form. No IV's or ports for me baby! I alternate between 2 different chemo pills each day. Its so simple. It also doesn't have the extreme side effects as the chemo I had last winter. So far, I still have my hair :o) Its thinner, but no balding! I also, have an incredible appetite...no nausea or sickness!
*I made another quick trip back to Ohio last week and got to attend the fundraiser my family & friends threw for us. Then my mom and I returned to Texas. This time we brought Julianna with us. She was having such a hard time being away from mommy that we decided it was in her best interest to be with me for a little while.
So that's where we are as of right now. We are planning on being here in Texas through December 6th when I have some tests and scans scheduled, but after that I shouldn't have to be down here except for a few days a month. I can't wait to see how well this chemo is working! I know in my heart that God has big plans for me and that this cancer is just a bump in the road.
I hope the last few posts haven't bored everyone, but I thought it would be easiest to just do a recap and catch people up in case they had missed anything. If you want anymore in depth details you can click here and read all my cancer related posts.
June 2011
*June was blissfully uneventful for the most part :o) I was watching the kids again and was even doing the things I had missed around the house. Julianna and I went berry picking and canned homemade jam. We spent some weekends at the camper. And life was good!
July 2011
*July 4th weekend, we went to the camper and had both our families over for a picnic. It was then that my back pain returned with major vengeance. I was in almost as much pain as I had been 9 months previously. I could barely walk or move.
*Dr H scheduled me for another long MRI (4 hours!), this time including scans of my pelvis. He put me back on pain meds until the results came back, but they didn't seem to help much. A few days later when I met with him he gave me the news that there was a fairly large tumor in my pelvis and it was pushing on my sciatic nerve (finally a source for my pain!). I was scheduled to see a surgeon for a consult.
*I met with Dr L (the surgeon) on Monday, July 18 and after seeing my pain and looking at my scans, he scheduled me to have surgery just 3 days later! I was so thankful for him being able to get me in so quickly. The day before my surgery, I was in so much pain I pretty much just layed on my parents couch crying all day and counting down the minutes between pain meds.
*July 21, I had surgery to remove the tumor from my pelvis. Basically, they cut clear through the left side of my rear end to get to it. I would go through 10 c-sections again before I would ever want to have the surgery to remove that tumor again. It was an extremely painful recovery. I spent 5 days in the Clinic recovering & then was transferred to a rehab facility.
*While in the rehab facility, I was the youngest resident by at least 50 years...haha! I had 30 minutes of physical therapy each day. By day 3 I had decided it was silly for me to be there and I was ready to come home. I was told I could go home the next morning :o) Unfortunately, Joe got a call from Dr H shortly after that and we received the news that I had multiple new tumors show up in my last scan and that my cancer was again getting worse. I was so upset I didn't give anyone a chance to keep me there. I told them I was going home right then. I hadn't seen my kids in over a week and I just wanted to be home with my family. I was discharged within 30 minutes.
August 2011
*I spent August trying to recover from my surgery (it was awful!) and starting radiation therapy on the parts of the tumor that could not be removed. Joe also got things rolling on getting a second opinion on my treatment at MD Anderson.
*August 25, I started having back pain again. This time I had a large knot on my back that was causing the pain. It felt like a really tight muscle knot and when it was rubbed it would ease a little. After some completely sleepless nights Dr H ordered another MRI of my back. This one showed I had a new tumor next to my spine and that my cancer was spreading quite quickly up my spine. So radiation to my back was added to what I was already getting on my pelvis.
*By the end of the month things were all set for Joe and I to travel to Houston, Texas to get my second opinion at MD Anderson the beginning of September.
September 2011
*I finished radiation therapy on Sept. 7 and Joe & I flew to Texas on Sept. 8th. September 9th, I met Dr Z for the first time. We instantly liked him and were really excited about everything he had to tell us.
*After lots of testing, Dr Z decided on a trial for me and things moved pretty quickly. We had to get an apartment, my parents flew down to help out, and I sadly wasn't able to return to Ohio to spend time with the kiddos. I started chemo and thanks to the steroids I got as a premeds I started feeling amazingly better!
*During all this time, a few things were discovered about my eyes. It is thought that I have carcinoma related retinopathy, BUT Dr S is so unclear about things that we still aren't exactly sure what is going on with my eyes.
October 2011
*I continued with chemo during October & dealt with periods of my severe back pain. We still don't know what is causing the back pain, but it seems to always be the worst at night, and so far the only thing that helps it is steroids, which none of the doctors want me to be on.
*Joe and Erin brought the kids out to see me for a week and I couldn't have been a happier! We took the kids to the zoo, and shopping, and we just had a wonderful time. Watching them leave for the airport was so hard.
*October 21, I met with Dr Z to go over the most recent scans & I learned that the trial I was on was not working. The cancer was still slowly growing. I was scheduled for an appointment the following week to find out a new plan of attack.
*October 25, I was put into a new trial and just a few hours later my mom & I were on a plane back to Ohio for a short trip. It was so nice to be home! It was even nicer to see Julianna's face when she woke up the next morning and found mommy was not in Texas!
*Here's where my miracles really start rolling in. A few days later, on October 26, Dr Z called Joe and told him they were 99% sure they now had found the primary source of my cancer. I am now diagnosed pancreatic neuroendocrine tumors (PNET). The good thing about that is that there is a specific treatment for it! Even better was that a trial just for PNET opened that day and I was accepted! And it included that new chemo drug that had been approved in May! This drug (everolimus) has an 86% success rate at reducing the size of PNET tumors and a high percentage of patients reach remission very quickly. I was thrilled!
November 2011
*Erin & I flew back to Texas and I started my new trial on November 4th. I love that this chemo is all pill form. No IV's or ports for me baby! I alternate between 2 different chemo pills each day. Its so simple. It also doesn't have the extreme side effects as the chemo I had last winter. So far, I still have my hair :o) Its thinner, but no balding! I also, have an incredible appetite...no nausea or sickness!
*I made another quick trip back to Ohio last week and got to attend the fundraiser my family & friends threw for us. Then my mom and I returned to Texas. This time we brought Julianna with us. She was having such a hard time being away from mommy that we decided it was in her best interest to be with me for a little while.
So that's where we are as of right now. We are planning on being here in Texas through December 6th when I have some tests and scans scheduled, but after that I shouldn't have to be down here except for a few days a month. I can't wait to see how well this chemo is working! I know in my heart that God has big plans for me and that this cancer is just a bump in the road.
I hope the last few posts haven't bored everyone, but I thought it would be easiest to just do a recap and catch people up in case they had missed anything. If you want anymore in depth details you can click here and read all my cancer related posts.
Monday, November 14, 2011
A Timeline (Part 2)
Here's some more about how the last year has gone...
January 2011
*A few weeks after my first round of chemo I had repeat scans done and miracle #1 appeared...a mass that had shown up on my spine before chemo was completely gone...GONE! The doctors were amazed. I continued with chemo sessions every 3 weeks and scans every few weeks.
*I went in for a routine CT scan on January 21 and instead of heading home after the scan I ended up admitted to the Clinic with a pulmonary embolism (a blood clot in my lung). I had no symptoms and felt great, but was so thankful it was caught! I started blood thinner injections and the PE was resolved by my next scan. Unfortunately, I still have to do twice daily blood thinner injections...not fun.
February 2011
*On February 5, my sister, family & friends held a benefit in my honor to help raise money for our medical expenses. I was completely overwhelmed at the success of the event! They did an amazing job and I was so touched that so many people came out to support me! I have never felt so much love.
*The chemo began taking a harder toll on me as each session happened. I would feel really crappy for the first week after (no appetite, really tired & just completely drained), I'd feel slightly better the second week and the third week I'd feel great...unfortunately I had chemo every 3 weeks, so it was a never-ending cycle.
March 2011
*I had a repeat bone marrow biopsy to check the progress of my cancer and was completely floored when it showed I was in "nearly complete" remission. I was given the option to either stop chemo and just monitor the cancer or I could opt for 2 more rounds and see if I could get complete remission. I opted for 2 more rounds. Dr H said he still couldn't believe how well I was responding to the chemo. He was so pleased.
April 2011
*After noticing some hearing changes, Dr H switched the type of chemo I got for my last round. I still have some hearing loss(a side effect of cisplatin), but overall it is very minor. I finished my last round of chemo on April 7 and then it was just a waiting game...3 weeks and then a repeat biopsy to check for complete remission.
May 2011
*May was a busy month for us medically. On May 5th, I went to the Clinic to see Dr H and get the results of my biopsy. It showed I was in COMPLETE remission! Since then, we have started to doubt whether I was actually in remission. There were no scans of my tumors to check them and now we know they were obviously still there. Another important event took place on May 5, but we had no knowledge of it or that it would become important to me...that's the day that my current chemo (everolimus) was approved to treat pancreatic neuroendocrine tumors.
*May 10th, Will had his second heart cath since his birth. The doctors tried to balloon his aorta to make it bigger, but unfortunately it wasn't successful (he will see his cardiologist, Dr Awesome, in January to determine what our next step is, right now its just monitoring him).
*Just 2 weeks after getting the great news about my remission, I had a few days of the same severe back pain I had experienced in the fall. Dr H immediately scheduled an MRI of my back for me, it didn't show anything, and we were relieved. We would later learn it was because the tumor causing the pain wasn't in my back, but was in my pelvis.
*May 25th, we left for a MUCH NEEDED family vacation to visit friends in South Carolina and then to spend a week with my family at the beach. It was the first time we felt like a normal family in a very very long time.
(To be continued again...)
January 2011
*A few weeks after my first round of chemo I had repeat scans done and miracle #1 appeared...a mass that had shown up on my spine before chemo was completely gone...GONE! The doctors were amazed. I continued with chemo sessions every 3 weeks and scans every few weeks.
*I went in for a routine CT scan on January 21 and instead of heading home after the scan I ended up admitted to the Clinic with a pulmonary embolism (a blood clot in my lung). I had no symptoms and felt great, but was so thankful it was caught! I started blood thinner injections and the PE was resolved by my next scan. Unfortunately, I still have to do twice daily blood thinner injections...not fun.
February 2011
*On February 5, my sister, family & friends held a benefit in my honor to help raise money for our medical expenses. I was completely overwhelmed at the success of the event! They did an amazing job and I was so touched that so many people came out to support me! I have never felt so much love.
*The chemo began taking a harder toll on me as each session happened. I would feel really crappy for the first week after (no appetite, really tired & just completely drained), I'd feel slightly better the second week and the third week I'd feel great...unfortunately I had chemo every 3 weeks, so it was a never-ending cycle.
March 2011
*I had a repeat bone marrow biopsy to check the progress of my cancer and was completely floored when it showed I was in "nearly complete" remission. I was given the option to either stop chemo and just monitor the cancer or I could opt for 2 more rounds and see if I could get complete remission. I opted for 2 more rounds. Dr H said he still couldn't believe how well I was responding to the chemo. He was so pleased.
April 2011
*After noticing some hearing changes, Dr H switched the type of chemo I got for my last round. I still have some hearing loss(a side effect of cisplatin), but overall it is very minor. I finished my last round of chemo on April 7 and then it was just a waiting game...3 weeks and then a repeat biopsy to check for complete remission.
May 2011
*May was a busy month for us medically. On May 5th, I went to the Clinic to see Dr H and get the results of my biopsy. It showed I was in COMPLETE remission! Since then, we have started to doubt whether I was actually in remission. There were no scans of my tumors to check them and now we know they were obviously still there. Another important event took place on May 5, but we had no knowledge of it or that it would become important to me...that's the day that my current chemo (everolimus) was approved to treat pancreatic neuroendocrine tumors.
*May 10th, Will had his second heart cath since his birth. The doctors tried to balloon his aorta to make it bigger, but unfortunately it wasn't successful (he will see his cardiologist, Dr Awesome, in January to determine what our next step is, right now its just monitoring him).
*Just 2 weeks after getting the great news about my remission, I had a few days of the same severe back pain I had experienced in the fall. Dr H immediately scheduled an MRI of my back for me, it didn't show anything, and we were relieved. We would later learn it was because the tumor causing the pain wasn't in my back, but was in my pelvis.
*May 25th, we left for a MUCH NEEDED family vacation to visit friends in South Carolina and then to spend a week with my family at the beach. It was the first time we felt like a normal family in a very very long time.
(To be continued again...)
A Timeline (Part 1)
My amazing friends and sister organized and threw yet another successful fundraiser for me and my family this past weekend. I am constantly in awe of the generosity and care that people have shown us during the last year. The money from the fundraiser is going to make it possible for me to continue to fly to Texas for appointments and treatments. YAY! I am going to write more about all those wonderful people and what they've been doing for us, but today's post is for all the people that asked me this weekend about exactly how the last year has gone and how I am feeling about where I currently am (in treatment and life).
So here's a hopefully easy to understand timeline of the last year (including some lovely parts that I know are indeed answered prayers), since there's so much info to tell, I am going to break it into several posts.
September 2010
*The normally sporadic back & leg pain (along my sciatic nerve) begins to increase and occasionally interferes with daily activities.
October 2010
*I see a new primary care doctor and she suggests physical therapy for the pain. I begin PT, but the pain just continues to worsen. I start some pretty heavy duty pain killers, but they don't work very well or for very long.
November 2010
*The pain got so bad I was no longer able to take care of the kids. I would average about an hour of sleep per night. The day after Thanksgiving, I ended up the ER for the first of almost a dozen visits for severe pain. I continued with PT, but still things got worse.
December 2010
*After much pushing we were finally able to get me an MRI of my back (this was after my PCP told me she wouldn't give me anymore pain killers and that she was concerned I might have just been a drug seeker...oh yeah she totally went there). The MRI showed some minor back issues (a slightly herniated disc and degenerative disc disease), but I was told by the back doctor (no clue what his name was) that they were not severe enough issues to be causing me this much pain. I then received a call from my primary care doctor (at 7pm on a Thursday night) that the MRI showed I had abnormal bone marrow all through my back and that it was often a sign of cancer, but try not to worry until I can get more information. Not worry???
*I met with a local hematologist and had a bone marrow biopsy. The phone call I got with results was shocking to say the least. I was immediately sent to the Clinic with an initial diagnosis of Harry Cell Leukemia (Dec. 18).
From Dec 18-Dec 25 I have very few memories. I only vaguely remember any of the hospital stay, so the next events are what people have told me happened.
*I had a gazillion tests done over the first week I was in the Clinic, more MRI's, PET scans, CT scans, another bone marrow biopsy and other tests. I slightly remember having a pretty nasty fall one day and hitting my head really hard, which didn't go over well with Joe or my mom considering I was not supposed to be left alone.
*It was determined that I did not have leukemia and I was transferred to a different floor of the hospital and Dr H became my oncologist. Dr H is definitely the first of some answered prayers. It was decided that I had Neuroendocrine cancer, but they had no idea where it was coming from and were shocked that it was in my bones. None of the doctors there had ever seen some with NETS in their bones. I remember being told later on that they contacted multiple other hospitals and doctors for consults and no one was able to give any information about my rare NETS.
*On Dec. 23 Dr H decided to start me on chemo. I later learned that all the other doctors told him the chemo wouldn't work on NETS (it usually doesn't) and that it was probably a waste of time. Dr H didn't listen and the first of all the prayers was answered. After just one dose of chemo, Joe and my mom said I improved so drastically they were shocked. By the 3rd day of chemo, I can remember a lot more. I was in so much less pain.
*Dec 28, I was discharged from the Clinic to go home. The chemo had made such a difference in me and from this point on I can remember everything fairly well.
*Dec 31, we celebrated Christmas and New Year's together as a family :o)
(To be continued...)
So here's a hopefully easy to understand timeline of the last year (including some lovely parts that I know are indeed answered prayers), since there's so much info to tell, I am going to break it into several posts.
September 2010
*The normally sporadic back & leg pain (along my sciatic nerve) begins to increase and occasionally interferes with daily activities.
October 2010
*I see a new primary care doctor and she suggests physical therapy for the pain. I begin PT, but the pain just continues to worsen. I start some pretty heavy duty pain killers, but they don't work very well or for very long.
November 2010
*The pain got so bad I was no longer able to take care of the kids. I would average about an hour of sleep per night. The day after Thanksgiving, I ended up the ER for the first of almost a dozen visits for severe pain. I continued with PT, but still things got worse.
December 2010
*After much pushing we were finally able to get me an MRI of my back (this was after my PCP told me she wouldn't give me anymore pain killers and that she was concerned I might have just been a drug seeker...oh yeah she totally went there). The MRI showed some minor back issues (a slightly herniated disc and degenerative disc disease), but I was told by the back doctor (no clue what his name was) that they were not severe enough issues to be causing me this much pain. I then received a call from my primary care doctor (at 7pm on a Thursday night) that the MRI showed I had abnormal bone marrow all through my back and that it was often a sign of cancer, but try not to worry until I can get more information. Not worry???
*I met with a local hematologist and had a bone marrow biopsy. The phone call I got with results was shocking to say the least. I was immediately sent to the Clinic with an initial diagnosis of Harry Cell Leukemia (Dec. 18).
From Dec 18-Dec 25 I have very few memories. I only vaguely remember any of the hospital stay, so the next events are what people have told me happened.
*I had a gazillion tests done over the first week I was in the Clinic, more MRI's, PET scans, CT scans, another bone marrow biopsy and other tests. I slightly remember having a pretty nasty fall one day and hitting my head really hard, which didn't go over well with Joe or my mom considering I was not supposed to be left alone.
*It was determined that I did not have leukemia and I was transferred to a different floor of the hospital and Dr H became my oncologist. Dr H is definitely the first of some answered prayers. It was decided that I had Neuroendocrine cancer, but they had no idea where it was coming from and were shocked that it was in my bones. None of the doctors there had ever seen some with NETS in their bones. I remember being told later on that they contacted multiple other hospitals and doctors for consults and no one was able to give any information about my rare NETS.
*On Dec. 23 Dr H decided to start me on chemo. I later learned that all the other doctors told him the chemo wouldn't work on NETS (it usually doesn't) and that it was probably a waste of time. Dr H didn't listen and the first of all the prayers was answered. After just one dose of chemo, Joe and my mom said I improved so drastically they were shocked. By the 3rd day of chemo, I can remember a lot more. I was in so much less pain.
*Dec 28, I was discharged from the Clinic to go home. The chemo had made such a difference in me and from this point on I can remember everything fairly well.
*Dec 31, we celebrated Christmas and New Year's together as a family :o)
(To be continued...)
Thursday, November 3, 2011
Quick Trip
We're baaaack. Look out Texas, I have returned! This time I feel better coming down here. I am coming down here with a game plan (mostly) and that feels so much better than when I came back in September not really knowing what would happen. Its also a lot easier coming down here this trip because it is a very short trip, just a few days.
I am supposed to be packing a ton of appointments into my short trip, but as of this very minute, tomorrow's (I guess actually "today's" since its 2am) schedule is still blank. It should be filled with all the scans this new trial needs me to have before chemo begins. So, it looks like I will be making lots of phone calls in order to get them all done so I can start the trial on Friday.
Friday's schedule had a new appointment added to to it today, I am going back to neurology to have my right leg checked out (my left leg was the one affected by my surgery in July). While I was home, the back of my right leg (from my rear end all the way down to my 2 smallest toes) went numb. The numbness is weird feeling, but doesn't really bother me. What did bother me was the excruciating pain I was having down that leg as well. I really feel it is some sort of pinched nerve because sometimes I can just shift positions and the symptoms vanish almost instantly.
Saturday, Erin and I get to just hang out with nothing to do. Unfortunately, the weather is supposed to be cold the next few days or we'd probably hang out by the pool. Then, on Sunday, we'll return home, me for just a few days. Due to me being a not so smartypants, I didn't buy the travel protection for our plane tickets when I originally booked them last Thursday. I didn't feel we needed it because I knew I was only going to be here for 2 days and then wouldn't be back again for a month. Then the trial I am in changed and so did the plans.
Technically, I could stay here in Texas and not return home since I will have more appointments each week for the next month or so, but since I didn't get the travel protection, it was going to cost me as much to change our flight plans as it would to just get another ticket for me for next week (I'll only need a one-way ticket next week). As promised to Julianna before my trial changed last Friday, I am coming back after just a short trip, I'll be there a few days and then be Texas bound mid-week.
Speaking of Julianna...the past week at home with my kiddos was A-M-A-Z-I-N-G!! I'm not sure I can even convey how awesome it felt to feel good and be playing with my kids in our own home, and doing things like taking Julianna to school, and going grocery shopping, and loading and unloading the dishwasher (yes, even that had a wonderful sense of normal that made me smile), and putting the kids to bed at night and saying bedtime prayers, and marveling in all the new things that Will can do by himself (some good, some not so much, lol)...it was all so fabulous. It has been so long since I felt good while in my own home (my symptoms all returned July 4th weekend) and I stinkin' loved it. I cannot wait to get home and stay home.
Now that this post has become just a rambling of sorts, I'll put an end to it. Hopefully, all the appointments I am cramming in will bring some great news...I love sharing good news, and I feel from this point on, there will be lots of good news. :o)
I am supposed to be packing a ton of appointments into my short trip, but as of this very minute, tomorrow's (I guess actually "today's" since its 2am) schedule is still blank. It should be filled with all the scans this new trial needs me to have before chemo begins. So, it looks like I will be making lots of phone calls in order to get them all done so I can start the trial on Friday.
Friday's schedule had a new appointment added to to it today, I am going back to neurology to have my right leg checked out (my left leg was the one affected by my surgery in July). While I was home, the back of my right leg (from my rear end all the way down to my 2 smallest toes) went numb. The numbness is weird feeling, but doesn't really bother me. What did bother me was the excruciating pain I was having down that leg as well. I really feel it is some sort of pinched nerve because sometimes I can just shift positions and the symptoms vanish almost instantly.
Saturday, Erin and I get to just hang out with nothing to do. Unfortunately, the weather is supposed to be cold the next few days or we'd probably hang out by the pool. Then, on Sunday, we'll return home, me for just a few days. Due to me being a not so smartypants, I didn't buy the travel protection for our plane tickets when I originally booked them last Thursday. I didn't feel we needed it because I knew I was only going to be here for 2 days and then wouldn't be back again for a month. Then the trial I am in changed and so did the plans.
Technically, I could stay here in Texas and not return home since I will have more appointments each week for the next month or so, but since I didn't get the travel protection, it was going to cost me as much to change our flight plans as it would to just get another ticket for me for next week (I'll only need a one-way ticket next week). As promised to Julianna before my trial changed last Friday, I am coming back after just a short trip, I'll be there a few days and then be Texas bound mid-week.
Speaking of Julianna...the past week at home with my kiddos was A-M-A-Z-I-N-G!! I'm not sure I can even convey how awesome it felt to feel good and be playing with my kids in our own home, and doing things like taking Julianna to school, and going grocery shopping, and loading and unloading the dishwasher (yes, even that had a wonderful sense of normal that made me smile), and putting the kids to bed at night and saying bedtime prayers, and marveling in all the new things that Will can do by himself (some good, some not so much, lol)...it was all so fabulous. It has been so long since I felt good while in my own home (my symptoms all returned July 4th weekend) and I stinkin' loved it. I cannot wait to get home and stay home.
Now that this post has become just a rambling of sorts, I'll put an end to it. Hopefully, all the appointments I am cramming in will bring some great news...I love sharing good news, and I feel from this point on, there will be lots of good news. :o)
Thursday, October 27, 2011
Ta Da!!
I was going to give tell everyone my incredibly wonderful news, but changed my mind.
KIDDING...please don't go all torches and pitchforks on me...heehee!
So today, I lined up plane tickets for my first chemo next week, put in notice on my apartment for next Sunday & made a bazillion phone calls and changed appointments to be able to go to them while I was there. And then Dr Z called Joe...and then Joe called me...and this is what he had to say...
They are now POSITIVE I have pancreatic neuroendocrine cancer...that alone would be enough good news...BUT WAIT, THERE'S MORE!
The trial that Dr Z really wanted me in but that wouldn't open for at least a month, OPENED today and I GOT IN IT!!! Now this is pending insurance approval for 1 of the meds, but who cares, I will make it work! I got in the pancreatic cancer trial that is using 2 meds that on their own have had amazing results, and now I will be trying both at once to see if they give an even better result.
HOW AWESOME IS THIS?!?!?!
Last night, part of my prayer went something like this "Dear God, put me in the trial that is best for me. I would really like in the second one, but know if you want me there, you will do it when you see fit, whether its in 1 month or 10."
He apparently decided I didn't even need to wait a month. My miracle is happening! GOD IS GOOD!
Ok, now that you've read my fantastic news, you can all start jumping up and down and yelling. Oh, you mean only I was that excited???
KIDDING...please don't go all torches and pitchforks on me...heehee!
So today, I lined up plane tickets for my first chemo next week, put in notice on my apartment for next Sunday & made a bazillion phone calls and changed appointments to be able to go to them while I was there. And then Dr Z called Joe...and then Joe called me...and this is what he had to say...
They are now POSITIVE I have pancreatic neuroendocrine cancer...that alone would be enough good news...BUT WAIT, THERE'S MORE!
The trial that Dr Z really wanted me in but that wouldn't open for at least a month, OPENED today and I GOT IN IT!!! Now this is pending insurance approval for 1 of the meds, but who cares, I will make it work! I got in the pancreatic cancer trial that is using 2 meds that on their own have had amazing results, and now I will be trying both at once to see if they give an even better result.
HOW AWESOME IS THIS?!?!?!
Last night, part of my prayer went something like this "Dear God, put me in the trial that is best for me. I would really like in the second one, but know if you want me there, you will do it when you see fit, whether its in 1 month or 10."
He apparently decided I didn't even need to wait a month. My miracle is happening! GOD IS GOOD!
Ok, now that you've read my fantastic news, you can all start jumping up and down and yelling. Oh, you mean only I was that excited???
Wednesday, October 26, 2011
More Sure Than Ever
Lots to tell! First off, I am home from Texas!!!! Its only for a week, but when I go back next week, I'll be packing up our apartment and only staying for a few days. Here's why...
Yesterday, when I met with Dr Z, he had a number of things to tell me besides what my new trial was going to be. The first amazing news he had was that they are almost certain they found the primary source of my cancer! That is awesome because until now it has been a mystery and without knowing the primary source it couldn't be treated very specifically. Dr Z, the radiologist & the pathologist all agreed on what my PS is...my pancreas.
There are 2 types of pancreatic cancer. The first is what most people know about (the one that Patrick Swayze had) that has very few treatment options, is very aggressive & doesn't allow much "time" for the patients (Dr Z said the average expectancy of a pancreatic cancer patient is only 4-6 months). LUCKILY, I have the second (very rare) type.
My cancer is still neuroendocrine, but neuroendocrine cancer (as I just recently learned) actually begins as a normal cell from another part of your body (usually the lungs) that becomes cancerous and moves to a new location in the body. In my case, some of my pancreatic cells became cancerous and instead of staying in my pancreas moved to my bones and became neuroendocrine cancer. Until now, I have been treated as though it started in my lungs since that's usually where it starts and we didn't know where it started. That would explain why I didn't stay in remission and possibly why the first trial didn't work. Pancreatic neuroendocrine cancer has a standard of care, which means it has a treatment for it!
I am still going to do a trial instead of the treatment, and I'll explain why. The trial Dr Z really really wants me in doesn't start for at least a month. And it uses the same drugs as the standard of care for my cancer along with another one. But he didn't want me sitting doing nothing for a month or more and just letting my cancer grow, so he put me in a different trial (that may also work) and put me on the list for the pancreatic neuroendocrine one. If my new trial isn't working in 1 month, he'll pull me from it and put me in the one he really wants. If it is working, then I'll just keep going with it (why quit something that works).
So my new trial only requires 1 day of chemo every 28 days & blood draws once a week (which they already told me I can do here at the Clinic). The other med in the trial is a pill and I just take it daily at home. What does this all mean for my traveling? It means I won't be living in Texas anymore!!! I will fly there once every 28 days for chemo and then come back home! I am leaving next week to go down and pack up the apartment and have my first chemo session, it will be a nice short 4 day trip. When I go back the beginning of December for my next round, I will have to be there a few days also because Dr Z will redo all my scans and tests and see if the treatment improved me at all. If it did, I keep going with it. If it didn't, I switch to the new trial (not sure what its schedule is, but Dr Z thought it was a once a month thing also).
I had several people tell me their prayers for the last week or so have been that I would get to come home to my kids (my mom was so disappointed when we found out the last trial didn't work and we might be staying there longer than we thought), this new trial got me home even sooner and lets me stay here longer :o) So prayers were most definitely answered. And I have been praying for months and months (almost a year now!) that someone would find the primary source of my cancer and finally someone did. Thank you God for sending me Dr Z!
I have been so sure that going to Texas was where I was meant to be and that it would be there that I would find my miracle. Now, I am more sure than ever.
Yesterday, when I met with Dr Z, he had a number of things to tell me besides what my new trial was going to be. The first amazing news he had was that they are almost certain they found the primary source of my cancer! That is awesome because until now it has been a mystery and without knowing the primary source it couldn't be treated very specifically. Dr Z, the radiologist & the pathologist all agreed on what my PS is...my pancreas.
There are 2 types of pancreatic cancer. The first is what most people know about (the one that Patrick Swayze had) that has very few treatment options, is very aggressive & doesn't allow much "time" for the patients (Dr Z said the average expectancy of a pancreatic cancer patient is only 4-6 months). LUCKILY, I have the second (very rare) type.
My cancer is still neuroendocrine, but neuroendocrine cancer (as I just recently learned) actually begins as a normal cell from another part of your body (usually the lungs) that becomes cancerous and moves to a new location in the body. In my case, some of my pancreatic cells became cancerous and instead of staying in my pancreas moved to my bones and became neuroendocrine cancer. Until now, I have been treated as though it started in my lungs since that's usually where it starts and we didn't know where it started. That would explain why I didn't stay in remission and possibly why the first trial didn't work. Pancreatic neuroendocrine cancer has a standard of care, which means it has a treatment for it!
I am still going to do a trial instead of the treatment, and I'll explain why. The trial Dr Z really really wants me in doesn't start for at least a month. And it uses the same drugs as the standard of care for my cancer along with another one. But he didn't want me sitting doing nothing for a month or more and just letting my cancer grow, so he put me in a different trial (that may also work) and put me on the list for the pancreatic neuroendocrine one. If my new trial isn't working in 1 month, he'll pull me from it and put me in the one he really wants. If it is working, then I'll just keep going with it (why quit something that works).
So my new trial only requires 1 day of chemo every 28 days & blood draws once a week (which they already told me I can do here at the Clinic). The other med in the trial is a pill and I just take it daily at home. What does this all mean for my traveling? It means I won't be living in Texas anymore!!! I will fly there once every 28 days for chemo and then come back home! I am leaving next week to go down and pack up the apartment and have my first chemo session, it will be a nice short 4 day trip. When I go back the beginning of December for my next round, I will have to be there a few days also because Dr Z will redo all my scans and tests and see if the treatment improved me at all. If it did, I keep going with it. If it didn't, I switch to the new trial (not sure what its schedule is, but Dr Z thought it was a once a month thing also).
I had several people tell me their prayers for the last week or so have been that I would get to come home to my kids (my mom was so disappointed when we found out the last trial didn't work and we might be staying there longer than we thought), this new trial got me home even sooner and lets me stay here longer :o) So prayers were most definitely answered. And I have been praying for months and months (almost a year now!) that someone would find the primary source of my cancer and finally someone did. Thank you God for sending me Dr Z!
I have been so sure that going to Texas was where I was meant to be and that it would be there that I would find my miracle. Now, I am more sure than ever.
Sunday, October 23, 2011
MY KIDDOS!!
Last Sunday, I wasn't the only one super excited for a long awaited reunion.
I could barely peel Julianna off of me in order to hold Will :o) It was so wonderful to see my kiddos again (it had been over a month and a half!)...I of course was excited to see Joe and my sister too, but seeing my kiddos was the best!
On Tuesday, we all went to the Houston Zoo. And everyone enjoyed it. The weather was gorgeous for going to the zoo...only a high of 75!
On Wednesday, we drove to Galveston to see the Gulf, but it was freezing that day, apparently the weather man was wrong when he said 70, because WeatherBug on my phone said 62 and it was SUPER windy! I did put my feet in the water, but we didn't stay very long.
Sadly, Thursday and Friday were spent at the hospital having testing done and meeting with Dr Z, so we didn't go do anything fun, but we did uphold our Halloween tradition (another post).
Saturday, morning we went to breakfast and then it was time for Joe, Erin & the kids to load up and head back to the airport. Julianna was very good about the whole thing until I started buckling her into her carseat. At that point it was an absolute meltdown, her first, then me. I knew saying good bye would be hard, but even trying to prepare myself didn't work. I sobbed like a baby.
I'm holding out hope that when I meet with Dr Z on Tuesday I will have a break before I start a new trial and can come home for a break. He did also tell me that he will try his hardest to make sure I get to go home for Thanksgiving. I really like Dr Z :o)
On Tuesday, we all went to the Houston Zoo. And everyone enjoyed it. The weather was gorgeous for going to the zoo...only a high of 75!
Sadly, Thursday and Friday were spent at the hospital having testing done and meeting with Dr Z, so we didn't go do anything fun, but we did uphold our Halloween tradition (another post).
Saturday, morning we went to breakfast and then it was time for Joe, Erin & the kids to load up and head back to the airport. Julianna was very good about the whole thing until I started buckling her into her carseat. At that point it was an absolute meltdown, her first, then me. I knew saying good bye would be hard, but even trying to prepare myself didn't work. I sobbed like a baby.
I'm holding out hope that when I meet with Dr Z on Tuesday I will have a break before I start a new trial and can come home for a break. He did also tell me that he will try his hardest to make sure I get to go home for Thanksgiving. I really like Dr Z :o)
Saturday, October 22, 2011
Waitin' on Tuesday
Although I received quite a bit of news yesterday that could really bum a person out, I am far from bummed out. I was not scheduled to get any of my testing done until next month, but Dr Z is doing some research of his own and decided to include me in it. That meant instead of waiting 2 complete cycles for my restaging, I would have it done at 1 month. Thank goodness I did.
The scans I had done on Thursday showed a few things. It showed that most of my cancer is stable (hasn't gotten worse, but hasn't gotten better either). It showed that the radiation I had on the tumor on my back (last minute radiation before we came to Texas) almost completely got rid of the tumor, it was barely visible on the scan. Woohoo! It also showed that one of my lymph nodes has gotten larger (more cancerous) and a small spot of fluid (not cancer, but cancer related) on my pancreas has significantly increased in size.
So, Dr Z decided that since a few things were getting worse, he didn't want to waste time continuing my current treatment if it wasn't working 100%. He is currently talking to the pathologist who gave a recent report (he had a few questions for him) as well as a few other doctors (there are some questions about my pancreas) and then he will decide what my next treatment will be and I will find that out on Tuesday.
Until then I am already 1 week into my 2 week wash (the time it takes to get all of the chemo out of my system before they can introduce a new one) and it may take 2-3 weeks for insurance to approve a new trial. We knew there was a chance going into clinical trials that they may not work and it may take several tries to find one that does, so we're not really shocked or disappointed. The disappointing part is that our stay here in Texas has now definitely been extended at least another month. And there is still the chance that depending on what trial I am in I could have to stay down here for all my treatments.
We're praying for a fabulous new trial, quick insurance approval, and a trial that I can also get back at the Clinic.
I'll be posting some fun pictures from this past week with the kiddos later :o)
The scans I had done on Thursday showed a few things. It showed that most of my cancer is stable (hasn't gotten worse, but hasn't gotten better either). It showed that the radiation I had on the tumor on my back (last minute radiation before we came to Texas) almost completely got rid of the tumor, it was barely visible on the scan. Woohoo! It also showed that one of my lymph nodes has gotten larger (more cancerous) and a small spot of fluid (not cancer, but cancer related) on my pancreas has significantly increased in size.
So, Dr Z decided that since a few things were getting worse, he didn't want to waste time continuing my current treatment if it wasn't working 100%. He is currently talking to the pathologist who gave a recent report (he had a few questions for him) as well as a few other doctors (there are some questions about my pancreas) and then he will decide what my next treatment will be and I will find that out on Tuesday.
Until then I am already 1 week into my 2 week wash (the time it takes to get all of the chemo out of my system before they can introduce a new one) and it may take 2-3 weeks for insurance to approve a new trial. We knew there was a chance going into clinical trials that they may not work and it may take several tries to find one that does, so we're not really shocked or disappointed. The disappointing part is that our stay here in Texas has now definitely been extended at least another month. And there is still the chance that depending on what trial I am in I could have to stay down here for all my treatments.
We're praying for a fabulous new trial, quick insurance approval, and a trial that I can also get back at the Clinic.
I'll be posting some fun pictures from this past week with the kiddos later :o)
Friday, October 7, 2011
The "Eyes" Have It!
Although we're still waiting on the results of my spinal tap from last week, yesterday at my appointment with Dr S I found out my eyes are stable. That means my vision is not getting worse right now and there's no rush to start a treatment. YAY!!! Some excellent news! Also the treatment Dr S was going to suggest for me right now was a once a week IV steroid and it just so happens that I get an IV steroid once a week before my chemo...perfect! She said that works out great.
It still looks like I do have CAR (carcinoma associated retinopathy), but they haven't been able to identify what antibody I have (my body produces antibodies to fight my tumors and they just happen to also fight my retinas). She actually thinks I may have a so far unidentified antibody. Some how it wouldn't surprise me if I have something no one else has ever had! I could be ground breaking...haha!
Thanks again for all the prayers and good thoughts! Love you all!
It still looks like I do have CAR (carcinoma associated retinopathy), but they haven't been able to identify what antibody I have (my body produces antibodies to fight my tumors and they just happen to also fight my retinas). She actually thinks I may have a so far unidentified antibody. Some how it wouldn't surprise me if I have something no one else has ever had! I could be ground breaking...haha!
Thanks again for all the prayers and good thoughts! Love you all!
Wednesday, October 5, 2011
A Week...A Month
This is the hardest thing I've done. Not the dozens of doctor's appointments, or all the scans, IV's & bloodwork, not even the chemo. Being away from my family is the hardest thing. It's been a week since I've kissed my husband and a month since I've hugged my kids. Will was 17 months old when I left and now he's 18 months old. I've missed Julianna's entire first month of preschool.
I think I would seriously go crazy if it wasn't for Skype. I can't wait to see them on the computer every day and hear Will's "mama! mama!" and see what kind of a mood Julianna is in (some days she'll talk my ear off and other days she could care less if she talks to me & I have to pry a conversation out of her).
It gets even harder when I hear that they are sick :o( Both kiddos are on antibiotics, Will because he's on the verge of an ear infection and Julianna because her cold has started making its way into her lungs (surprise surprise...gotta love those preemie lungs). She's also had a temp the last few days. This is the picture Joe sent me yesterday...he said she spent almost all day on the couch.
Will however does not let something like a silly cold and ear infection stop him. He was up and playing all day and watching Toy Story in "Julianna's chair" (one of his favorite seats). Joe also said he would periodically bring Julianna toys to play with. Such a sweetheart!
This is also hard on my mom. She has made the sacrifice of moving to Texas with me. She hasn't seen my dad in a week and that's the longest amount of time they have been apart in 34 years of marriage. We're looking at at least 7 more weeks here with the possibility of up to 7 months (if that's the case I may need some volunteers to come live with me to give her a break!)
As far as medical things go, I see Dr S tomorrow and should finally get some definite answers about my eyes and the treatment for them. I also have my second round of chemo on Friday afternoon. Its amazing how much less I dread chemo when it isn't as harsh as it was last winter. I have also ditched the crutches for good! Woohoo! And I'm not even walking with a limp! Now I am working on building up my stamina again. My current goal is to be able to walk to the grocery store down the street (0.3miles...I know its not far, but I'm a weakling still and I'm afraid I could get there, do the shopping and then not be able to make it back...haha!).
As always, thank you everyone for your prayers, good thoughts & vibes. Every one of them is greatly appreciated!
I think I would seriously go crazy if it wasn't for Skype. I can't wait to see them on the computer every day and hear Will's "mama! mama!" and see what kind of a mood Julianna is in (some days she'll talk my ear off and other days she could care less if she talks to me & I have to pry a conversation out of her).
Will however does not let something like a silly cold and ear infection stop him. He was up and playing all day and watching Toy Story in "Julianna's chair" (one of his favorite seats). Joe also said he would periodically bring Julianna toys to play with. Such a sweetheart!
This is also hard on my mom. She has made the sacrifice of moving to Texas with me. She hasn't seen my dad in a week and that's the longest amount of time they have been apart in 34 years of marriage. We're looking at at least 7 more weeks here with the possibility of up to 7 months (if that's the case I may need some volunteers to come live with me to give her a break!)
As far as medical things go, I see Dr S tomorrow and should finally get some definite answers about my eyes and the treatment for them. I also have my second round of chemo on Friday afternoon. Its amazing how much less I dread chemo when it isn't as harsh as it was last winter. I have also ditched the crutches for good! Woohoo! And I'm not even walking with a limp! Now I am working on building up my stamina again. My current goal is to be able to walk to the grocery store down the street (0.3miles...I know its not far, but I'm a weakling still and I'm afraid I could get there, do the shopping and then not be able to make it back...haha!).
As always, thank you everyone for your prayers, good thoughts & vibes. Every one of them is greatly appreciated!
Monday, October 3, 2011
What's Been Happening
I know its been over a week since my last post, but I have been one very busy girl! My mom and I are all settled into our temporary home. Its a cute little apartment that has everything we need (except for groceries and our clothes). Its also fabulous that it has a shuttle to the hospital. If we want to go anywhere other than MD Anderson though we have to take a cab, and they are not cheap! So we have tried to limit our cab rides. Here's a few pics of our temporary home :o)
Without having a car here we've had to find some alternatives for getting things we need. Amazingly, we found a grocery store that delivers! You place your order online and then pick a delivery date. Even better is that they were having a special we were able to get that means we'll have free delivery for the entire month of October.
As far as the medical aspect of our stay goes, I had my lumbar puncture (spinal tap) on Thursday and it wasn't bad. I barely felt a thing, thank goodness! I was pretty worried about it. Unfortunately, one possible side effect of it is back pain, and that just happens to be the only side effect I'm experiencing, but add that to my current back pain and I had a pretty miserable time.
I had 2 days this past week where my mom and I spent more than 13 hours at the hospital. The first was Tuesday. My blood counts were really low (due to the cancer being in bone marrow again) and I had to have a blood transfusion. We got to the hospital that day at 8am and left at 9:30pm. I started my chemo this past Friday and that was our second extremely long day (7:45am-9:15pm). My third drug was finally approved thanks to Dr Z changing the wording in my diagnosis just slightly. I will have chemo each Friday (only 1 day a week) for 3 weeks and then have the 4th week off. Then the cycle repeats. There is no set time for how long I will get this chemo. Since its a clinical trial, they are still working on finding correct dosage and length of administration. The hope is that with cooperation from the Cleveland Clinic I will be able to come home and receive treatments there after my first 2 cycles. I would still need to fly down here once a month to see Dr Z, but that would mean I could be with my kiddos rather than staying here in an apartment.
I was excited to learn that the drugs I am getting this time (although still very strong) are less harsh than the ones I got last winter. They have fewer side effects (I haven't had any so far...fingers crossed!), and the side effects they have are not as severe as the ones from the drugs I had before (no risk for hearing loss, hair loss should be minimal, nausea is less severe, etc...).
I am still doing testing for my eye sight. I see one more specialist tomorrow ( a retina specialist) and then hopefully will finally have a definitive diagnosis on my eyes and a plan for treatment. Dr S has been working with a doctor at the Mayo Clinic for my case. They apparently found a certain antibody in my blood that is caused by cancer and it affects the eyes (this is my understanding so far) and this particular doctor is the one who discovered this antibody so he's an expert. I am hoping to know more when I meet with Dr S on Thursday.
This week is another busy week with appointments every day except Wednesday. I feel great after my first round of chemo and I am praying that continues! I'll keep everyone updated. :o)
Our kitchen
The living room
The dining area and door to our balcony
Without having a car here we've had to find some alternatives for getting things we need. Amazingly, we found a grocery store that delivers! You place your order online and then pick a delivery date. Even better is that they were having a special we were able to get that means we'll have free delivery for the entire month of October.
As far as the medical aspect of our stay goes, I had my lumbar puncture (spinal tap) on Thursday and it wasn't bad. I barely felt a thing, thank goodness! I was pretty worried about it. Unfortunately, one possible side effect of it is back pain, and that just happens to be the only side effect I'm experiencing, but add that to my current back pain and I had a pretty miserable time.
I had 2 days this past week where my mom and I spent more than 13 hours at the hospital. The first was Tuesday. My blood counts were really low (due to the cancer being in bone marrow again) and I had to have a blood transfusion. We got to the hospital that day at 8am and left at 9:30pm. I started my chemo this past Friday and that was our second extremely long day (7:45am-9:15pm). My third drug was finally approved thanks to Dr Z changing the wording in my diagnosis just slightly. I will have chemo each Friday (only 1 day a week) for 3 weeks and then have the 4th week off. Then the cycle repeats. There is no set time for how long I will get this chemo. Since its a clinical trial, they are still working on finding correct dosage and length of administration. The hope is that with cooperation from the Cleveland Clinic I will be able to come home and receive treatments there after my first 2 cycles. I would still need to fly down here once a month to see Dr Z, but that would mean I could be with my kiddos rather than staying here in an apartment.
I was excited to learn that the drugs I am getting this time (although still very strong) are less harsh than the ones I got last winter. They have fewer side effects (I haven't had any so far...fingers crossed!), and the side effects they have are not as severe as the ones from the drugs I had before (no risk for hearing loss, hair loss should be minimal, nausea is less severe, etc...).
I am still doing testing for my eye sight. I see one more specialist tomorrow ( a retina specialist) and then hopefully will finally have a definitive diagnosis on my eyes and a plan for treatment. Dr S has been working with a doctor at the Mayo Clinic for my case. They apparently found a certain antibody in my blood that is caused by cancer and it affects the eyes (this is my understanding so far) and this particular doctor is the one who discovered this antibody so he's an expert. I am hoping to know more when I meet with Dr S on Thursday.
This week is another busy week with appointments every day except Wednesday. I feel great after my first round of chemo and I am praying that continues! I'll keep everyone updated. :o)
Saturday, September 24, 2011
Coming Together
Things are finally starting to come together.
The last 2 days have been really rough. I started having really bad muscle spasms in my back and stomach (bad as in curled up in a ball crying when they would happen). I spent all of Thursday night sitting on the couch watching TV propped up by a million pillows because they were so bad I couldn't even lay down in bed to try to sleep. When I went to my first appointment yesterday, they got so bad Joe had to get me a wheelchair and took me to supportive care (the department that helps patients with pain or any non-chemo related issues).
I was crying and a complete mess. They gave me an injection of morphine and an anti-inflammatory while I was there, and after 20 minutes I was feeling much better. I left with 2 new meds, an anti-inflammatory and a muscle relaxer specific for spasms. I slept most of the afternoon and evening and then from 9:30 to 5 this morning! I feel amazing after all that sleep! And the best part is that I haven't had any muscle spasms!
So my meds have finally been worked out as far as pain goes. I hate that I am taking so many medications...4 just for pain & spasms (I normally refuse to take meds, I just don't like to take many) but this time I don't care because they are actually working!
I'm excited that we are going to pick my parents up from the airport this morning. I can't wait to see some family other than through Skype. My dad is only staying through Wednesday, and then he and Joe will fly back home, but my mom is going to be staying with me for at least the next 2 months. We are moving into our apartment tomorrow, I can't wait to be out of a hotel room. The apartment is super nice, but rent is so much higher here than back home. One of the main reasons we chose it was because it has a shuttle to and from the hospital and to the grocery store (my mom and I won't have a car here). It's also great because its set up for patients so it is completely furnished and stocked with "everything but your clothes".
I still have to get a spinal tap done (we had to cancel yesterday's appointment due to being in supportive care) and we are waiting on pharmaceutical approval on 2 of my chemo drugs (if we'll get them free, our insurance approved everything except those 2 drugs), but otherwise I am tentatively set to start treatment on Friday. I'm happy to get started and get this all over with, but I'm not looking forward to months of chemo and being away from Joe and the kids. We were able to get 2 free round trip tickets on Southwest for me to use anytime between now and the end of December, so hopefully I'll be coming back for visits soon!
All in all things are finally coming together and I am so glad! Thank you so much to everyone that has been praying for us, sending us love, good vibes, and any other good thoughts! I still believe this is where I am meant to be and that Texas is where I am going to finally kick this cancer's butt!
The last 2 days have been really rough. I started having really bad muscle spasms in my back and stomach (bad as in curled up in a ball crying when they would happen). I spent all of Thursday night sitting on the couch watching TV propped up by a million pillows because they were so bad I couldn't even lay down in bed to try to sleep. When I went to my first appointment yesterday, they got so bad Joe had to get me a wheelchair and took me to supportive care (the department that helps patients with pain or any non-chemo related issues).
I was crying and a complete mess. They gave me an injection of morphine and an anti-inflammatory while I was there, and after 20 minutes I was feeling much better. I left with 2 new meds, an anti-inflammatory and a muscle relaxer specific for spasms. I slept most of the afternoon and evening and then from 9:30 to 5 this morning! I feel amazing after all that sleep! And the best part is that I haven't had any muscle spasms!
So my meds have finally been worked out as far as pain goes. I hate that I am taking so many medications...4 just for pain & spasms (I normally refuse to take meds, I just don't like to take many) but this time I don't care because they are actually working!
I'm excited that we are going to pick my parents up from the airport this morning. I can't wait to see some family other than through Skype. My dad is only staying through Wednesday, and then he and Joe will fly back home, but my mom is going to be staying with me for at least the next 2 months. We are moving into our apartment tomorrow, I can't wait to be out of a hotel room. The apartment is super nice, but rent is so much higher here than back home. One of the main reasons we chose it was because it has a shuttle to and from the hospital and to the grocery store (my mom and I won't have a car here). It's also great because its set up for patients so it is completely furnished and stocked with "everything but your clothes".
I still have to get a spinal tap done (we had to cancel yesterday's appointment due to being in supportive care) and we are waiting on pharmaceutical approval on 2 of my chemo drugs (if we'll get them free, our insurance approved everything except those 2 drugs), but otherwise I am tentatively set to start treatment on Friday. I'm happy to get started and get this all over with, but I'm not looking forward to months of chemo and being away from Joe and the kids. We were able to get 2 free round trip tickets on Southwest for me to use anytime between now and the end of December, so hopefully I'll be coming back for visits soon!
All in all things are finally coming together and I am so glad! Thank you so much to everyone that has been praying for us, sending us love, good vibes, and any other good thoughts! I still believe this is where I am meant to be and that Texas is where I am going to finally kick this cancer's butt!
Thursday, September 22, 2011
Making Plans
I hate making plans when you really have no idea what's going on, but that seems to be the way things go around here. So we've started making plans.
We will not be flying home on Saturday like we had originally planned. I am getting a spinal tap Friday afternoon, and will highly doubt I will be up for flying the next morning. I also meet with Dr S Friday morning to find out exactly what treatment she wants to do for my eyes and she had said the other day she wanted to start it ASAP. Our insurance has approved one of my chemo drugs (the other 2 we applied to get for free from the pharmaceutical companies and should know by Friday if we'll get them free). At that point I will probably start my treatment next week.
So, all in all, we really don't have any idea exactly what's going on and yet we are being forced to make plans as though we do. My parents are flying out here Saturday morning, my mom is going to stay with me during my treatments since Joe has to go back to work. We've extended our hotel stay and our rental car. We are waiting to hear back about an apartment for my mom and I to move into for the next 2-7 months. And we need everything solidified before next Wednesday when Joe and my dad will fly home. We're making these plans in the hopes that everything doesn't fall through.
Some good news we got today, after seeing eye specialist #4, Dr W, she said my CAR is very very early stage and she is very optimistic at this point because other than my night blindness they can still correct my vision to 20/20 with lenses. That means I have very little vision loss so far. Basically, my blind spots are very large in each eye, but the other eye can still compensate for it.
Some other possible good news happened when Joe got an unexpected call from Dr H back in Ohio (who is on vacation and called from his house) That he feels confident if MD Anderson can work it out and our insurance plays nicely, that after my first cycle (2 months) I could get my remaining cycles at the Clinic, which mean I could be home for them! I would just have to fly out here the beginning of each cycle to be evaluated.
And so we keep making plans, not really knowing what exactly is going on.
We will not be flying home on Saturday like we had originally planned. I am getting a spinal tap Friday afternoon, and will highly doubt I will be up for flying the next morning. I also meet with Dr S Friday morning to find out exactly what treatment she wants to do for my eyes and she had said the other day she wanted to start it ASAP. Our insurance has approved one of my chemo drugs (the other 2 we applied to get for free from the pharmaceutical companies and should know by Friday if we'll get them free). At that point I will probably start my treatment next week.
So, all in all, we really don't have any idea exactly what's going on and yet we are being forced to make plans as though we do. My parents are flying out here Saturday morning, my mom is going to stay with me during my treatments since Joe has to go back to work. We've extended our hotel stay and our rental car. We are waiting to hear back about an apartment for my mom and I to move into for the next 2-7 months. And we need everything solidified before next Wednesday when Joe and my dad will fly home. We're making these plans in the hopes that everything doesn't fall through.
Some good news we got today, after seeing eye specialist #4, Dr W, she said my CAR is very very early stage and she is very optimistic at this point because other than my night blindness they can still correct my vision to 20/20 with lenses. That means I have very little vision loss so far. Basically, my blind spots are very large in each eye, but the other eye can still compensate for it.
Some other possible good news happened when Joe got an unexpected call from Dr H back in Ohio (who is on vacation and called from his house) That he feels confident if MD Anderson can work it out and our insurance plays nicely, that after my first cycle (2 months) I could get my remaining cycles at the Clinic, which mean I could be home for them! I would just have to fly out here the beginning of each cycle to be evaluated.
And so we keep making plans, not really knowing what exactly is going on.
Saturday, September 17, 2011
This is Where I'm Meant to Be
My last update talked about Dr S and my possible miracle...well, it didn't turn out to be the miracle I hoped for (there had been a teensy weensy itty bitty chance I had been misdiagnosed and had an auto-immunne disorder rather than cancer...too bad that didn't end up being the case!). But seeing Dr S was still a great thing. It turns out I have carcinoma associated retinopathy (CAR).
Basically, CAR is the result of someone with cancer producing a certain type of antibody that attacks the retina and eyes, eventually causing blindness (its very rare...go figure!). The good news is that Dr S is hopeful that since I'm young (this usually only occurs in older people) and it has been caught at a very early stage (I have minimal vision loss so far) that treatment will stabilize my eyes and keep my vision from getting worse.
The bad news is she may want to start treatment right away which means I may not be coming home between my consult & when I start chemo :o( I'm obviously going to do whatever she wants me to, but it will sure be hard to not come home & see my kiddos.
I am still in the clinical trial, as long as insurance goes through. I meet the requirements to get 2 of the 3 chemo drugs free, so I'm hoping for that, then insurance would only have to pay for one of them and my standard of care. We'll know more this week after another eye consult & testing, a spinal tap, meeting with Dr S again and finding out about insurance. So, I'll update again when we know more, but I know this is where I am meant to be.
Please keep praying!
Basically, CAR is the result of someone with cancer producing a certain type of antibody that attacks the retina and eyes, eventually causing blindness (its very rare...go figure!). The good news is that Dr S is hopeful that since I'm young (this usually only occurs in older people) and it has been caught at a very early stage (I have minimal vision loss so far) that treatment will stabilize my eyes and keep my vision from getting worse.
The bad news is she may want to start treatment right away which means I may not be coming home between my consult & when I start chemo :o( I'm obviously going to do whatever she wants me to, but it will sure be hard to not come home & see my kiddos.
I am still in the clinical trial, as long as insurance goes through. I meet the requirements to get 2 of the 3 chemo drugs free, so I'm hoping for that, then insurance would only have to pay for one of them and my standard of care. We'll know more this week after another eye consult & testing, a spinal tap, meeting with Dr S again and finding out about insurance. So, I'll update again when we know more, but I know this is where I am meant to be.
Please keep praying!
Thursday, September 15, 2011
Miracles on the Horizon!
There is still so much I can;t tell you right now, but here's what I can.
As of right now I am scheduled in a clinical trial! The trial takes 3 current chemo drugs and uses them together to see if the outcome is improved. Unfortunately, that protocol would require me to be in Texas 3 weeks at a time and then I could be home the 4th week. Then back for 3 weeks off for 1. This would be for at least 4 months. That's a lot of time away from home :o( But we've alreafy started coming up with a plan if thats the way things go.
Now on to the beginning of my miracle...Joe just happened to mention to Dr Z that I had some retinal issues over the summer. To make sure it wouldn't interfere with the trial I was sent downstairs to see an opthamologist. But not just any opthamologist....she's also a neurologist...Joe calls her our very own "Dr House" We spent 7 hours in her office...7 stinkin' long hours....but in the end it was worth it. She found out I am having a lot more vision issues than I thought. I knew I was having trouble seeing in the dark, and that I have major amounts of floaters, but she also found out I have an unusually large blind spot in each eye (think instead of the size of the tip of you finger, mine is about the size of an open hand.)She also found swollen optic nerves, as well as a number of other problems.
So what does it all mean? She had me go get some bloodwork today to check for a host of things no one has ever checked for. She also had me go get an ultrasound of my eyes and an ERG (they put electrodes on my eyes...don't worry it didn't hurt at all!). Her worst case scenario is that I have carcinoma related retinopathy, or basically b/c I have tumors my body is fighting my eyes, and had it not be caught I could have lost my eyesight. Miracle #1! My opthamolgist in Ohio said my eyes were fine just the beginning of July. She says we can now save my eyesight! Best case scenario I don't want to share just yet. It has a slim to none chance, but I am holding out hope for the chance. Let's just say it would TOTALLY change my life! And by totally I mean its HUGE!
Right now, we're basically "on call" We"re waiting for Dr S to call with what she found, we're waiting to hear back from Dr Z if I can go ahead with the trial, and we're waiting to hear from our study coordinator exactly what the details would be. But it all hinges on Dr S.
Now besides all that I had a few other perks that made my day...I found out with this trial I won't need to get a port placed...WOOHOO!!! One less surgery! I also found out I may be able to stop my lovenox injections twice a day...YIPPEE!!! But again the biggest news of the day was Dr S possible new theory. Its killing me not to share, but we want to wait until there is actual news to share.
On a kiddo note...I MISS THEM! We skype with them every night before bedtime and it has definitely helped...at least me :o) Julianna went to her second day of preschool yesterday (she missed the actual 2nd day b/c she was sick) and when Joe's mom dropped her off she cried and cried "Grandma, don't leave me here!" over and over., it broke Joe's mom's heart. But when she got picked up, she was all smiles and even had a ladybug stamp for good behavior!
Will is dealing with a yeast infection right now and his favorite part of treatment is getting to run around naked for a little bit each day. I really hope when we get back we'll be able to keep clothes on him! Haha! Both kids have enjoyed playing with cousins, trips to the apple orchard, checking out Oma & Opa's baby cows and so much more. I know they are having a great time, but it still gets to me when Julianna asks when we're coming home from "this vacation thing".I really miss them!
Well, folks, I promise that as soon as we have a definite answer and plan as to what is going to be happening here I will let you all know. But in the meantime, pray like you've never prayed before for Dr S and my miracle! Thanks everyone!
*sorry for any typos, I'm typing in the dark while Joe is sleeping.
As of right now I am scheduled in a clinical trial! The trial takes 3 current chemo drugs and uses them together to see if the outcome is improved. Unfortunately, that protocol would require me to be in Texas 3 weeks at a time and then I could be home the 4th week. Then back for 3 weeks off for 1. This would be for at least 4 months. That's a lot of time away from home :o( But we've alreafy started coming up with a plan if thats the way things go.
Now on to the beginning of my miracle...Joe just happened to mention to Dr Z that I had some retinal issues over the summer. To make sure it wouldn't interfere with the trial I was sent downstairs to see an opthamologist. But not just any opthamologist....she's also a neurologist...Joe calls her our very own "Dr House" We spent 7 hours in her office...7 stinkin' long hours....but in the end it was worth it. She found out I am having a lot more vision issues than I thought. I knew I was having trouble seeing in the dark, and that I have major amounts of floaters, but she also found out I have an unusually large blind spot in each eye (think instead of the size of the tip of you finger, mine is about the size of an open hand.)She also found swollen optic nerves, as well as a number of other problems.
So what does it all mean? She had me go get some bloodwork today to check for a host of things no one has ever checked for. She also had me go get an ultrasound of my eyes and an ERG (they put electrodes on my eyes...don't worry it didn't hurt at all!). Her worst case scenario is that I have carcinoma related retinopathy, or basically b/c I have tumors my body is fighting my eyes, and had it not be caught I could have lost my eyesight. Miracle #1! My opthamolgist in Ohio said my eyes were fine just the beginning of July. She says we can now save my eyesight! Best case scenario I don't want to share just yet. It has a slim to none chance, but I am holding out hope for the chance. Let's just say it would TOTALLY change my life! And by totally I mean its HUGE!
Right now, we're basically "on call" We"re waiting for Dr S to call with what she found, we're waiting to hear back from Dr Z if I can go ahead with the trial, and we're waiting to hear from our study coordinator exactly what the details would be. But it all hinges on Dr S.
Now besides all that I had a few other perks that made my day...I found out with this trial I won't need to get a port placed...WOOHOO!!! One less surgery! I also found out I may be able to stop my lovenox injections twice a day...YIPPEE!!! But again the biggest news of the day was Dr S possible new theory. Its killing me not to share, but we want to wait until there is actual news to share.
On a kiddo note...I MISS THEM! We skype with them every night before bedtime and it has definitely helped...at least me :o) Julianna went to her second day of preschool yesterday (she missed the actual 2nd day b/c she was sick) and when Joe's mom dropped her off she cried and cried "Grandma, don't leave me here!" over and over., it broke Joe's mom's heart. But when she got picked up, she was all smiles and even had a ladybug stamp for good behavior!
Will is dealing with a yeast infection right now and his favorite part of treatment is getting to run around naked for a little bit each day. I really hope when we get back we'll be able to keep clothes on him! Haha! Both kids have enjoyed playing with cousins, trips to the apple orchard, checking out Oma & Opa's baby cows and so much more. I know they are having a great time, but it still gets to me when Julianna asks when we're coming home from "this vacation thing".I really miss them!
Well, folks, I promise that as soon as we have a definite answer and plan as to what is going to be happening here I will let you all know. But in the meantime, pray like you've never prayed before for Dr S and my miracle! Thanks everyone!
*sorry for any typos, I'm typing in the dark while Joe is sleeping.
Saturday, September 10, 2011
Hello Texas!
We arrived safely Thursday afternoon, after a few mix ups which included almost missing our plane(even though we were at the airport 3 hours early!) because the gate changed at the last minute, arriving at a different airport than Joe thought (we came into Bush and he thought we were coming into Hobby) and trying to get a rental car since we were at a different airport. But everything worked out and we are here!
We met with Dr Z for my consult today and basically he scheduled some testing for me on Monday and I will see him again on Tuesday to hopefully get a plan of action. He did say some things that sounded promising (about my health and type of cancer), but I'm not going to share until I know more and understand them for sure.
So Joe & I have the weekend to have fun. We're not sure what we're going to do, maybe some museums or something (since I can't do a ton of walking yet). I keep telling him this is our honeymoon. Haha! When we got married, we didn't go on a honeymoon, instead we took our money and bought our first house. At the time, it was an excellent decision and we were so glad we did it. We promised for our 5th anniversary we'd take the honeymoon we missed. Well, this year was 5 years and life had other plans that didn't include an exotic getaway. Even though this trip doesn't include a beach, or room service, or romantic settings, but rather hospitals, testing and lots of paperwork, it is our first trip without the kiddos. Every chance we get we comment about how much we're enjoying our honeymoon...heehee!
And speaking of the kiddos, thank goodness for Skype! Julianna has skyped with us several times each day. Today she AMAZED me and went through all her alphabet flashcards out of order and got them correct! She's such a smartie and I'm so glad I'm not missing out on anything while we're here! We also got to say bedtime prayers with her tonight which was wonderful! Will also loves to chat with us, mostly just blowing kisses :o)
I hope I'll have more info for everyone soon (and really good info at that!). Please keep saying prayers, I really believe I am meant to be here right now and that my miracle is just around the corner!
We met with Dr Z for my consult today and basically he scheduled some testing for me on Monday and I will see him again on Tuesday to hopefully get a plan of action. He did say some things that sounded promising (about my health and type of cancer), but I'm not going to share until I know more and understand them for sure.
So Joe & I have the weekend to have fun. We're not sure what we're going to do, maybe some museums or something (since I can't do a ton of walking yet). I keep telling him this is our honeymoon. Haha! When we got married, we didn't go on a honeymoon, instead we took our money and bought our first house. At the time, it was an excellent decision and we were so glad we did it. We promised for our 5th anniversary we'd take the honeymoon we missed. Well, this year was 5 years and life had other plans that didn't include an exotic getaway. Even though this trip doesn't include a beach, or room service, or romantic settings, but rather hospitals, testing and lots of paperwork, it is our first trip without the kiddos. Every chance we get we comment about how much we're enjoying our honeymoon...heehee!
And speaking of the kiddos, thank goodness for Skype! Julianna has skyped with us several times each day. Today she AMAZED me and went through all her alphabet flashcards out of order and got them correct! She's such a smartie and I'm so glad I'm not missing out on anything while we're here! We also got to say bedtime prayers with her tonight which was wonderful! Will also loves to chat with us, mostly just blowing kisses :o)
I hope I'll have more info for everyone soon (and really good info at that!). Please keep saying prayers, I really believe I am meant to be here right now and that my miracle is just around the corner!
Wednesday, August 31, 2011
1 Step Forward, 2 Steps Back
Yesterday was a bit of a surprising day for us. Starting last Thursday, I began having some pretty bad back pain. It was muscle aches and pains because I could feel all the muscles tense up. I had a knot the size of a baseball form on the left side. I assumed it was because I am now walking on my left leg and using muscles I hadn't used in 6 weeks.
After a few nights were I was in so much pain I didn't sleep at all, a call was made to Dr H to see if he could prescribe me some kind of muscle relaxer. He wanted to see me first and re-evaluate all my meds, so we made the trip to see him yesterday. After he looked at my "knot" he ordered a STAT MRI to rule out a tumor before prescribing me anything.
About an hour after my MRI I got a call from Dr H. The "know was not muscle, it was a tumor. Not only do I have a rather large tumor next to my spine, but it is rapidly growing and the cancer was spreading from just my pelvis up my spine. And did I mention the reason it was so painful is because it resting on a nerve that comes off my spinal cord and wraps around my waist to just above my bellybutton. What's up with these tumors sitting on nerves?!?!?! Not a fun afternoon.
Since we already have everything booked for our trip to Houston, the plan of attack for the tumor had to be quick. So today I met with my radiation oncologist, Dr L and he mapped out a treatment plan And I start radiation on it tomorrow afternoon (in addition to the radiation I am already getting). We are going to pack the whole treatment into 5 days, I'll get my last treatment the morning we leave for Texas. Both Dr H and Dr L believe that radiating this tumor will have the best effect. If it were to be allowed to continue to grow it would begin compressing my spinal cord which would be very bad.
Once again, pain has saved me from what could have been a much worse situation. Although, I would really like for a different symptom next time I need tipped off about something. So that is why my Tuesday was so bad. I feel like I take one step forward and cancer kicks me and sends me back 2 steps. I truly believe that I will frond the answers I am looking for in Texas. And I am very eager to get there and see what they have to say.
After a few nights were I was in so much pain I didn't sleep at all, a call was made to Dr H to see if he could prescribe me some kind of muscle relaxer. He wanted to see me first and re-evaluate all my meds, so we made the trip to see him yesterday. After he looked at my "knot" he ordered a STAT MRI to rule out a tumor before prescribing me anything.
About an hour after my MRI I got a call from Dr H. The "know was not muscle, it was a tumor. Not only do I have a rather large tumor next to my spine, but it is rapidly growing and the cancer was spreading from just my pelvis up my spine. And did I mention the reason it was so painful is because it resting on a nerve that comes off my spinal cord and wraps around my waist to just above my bellybutton. What's up with these tumors sitting on nerves?!?!?! Not a fun afternoon.
Since we already have everything booked for our trip to Houston, the plan of attack for the tumor had to be quick. So today I met with my radiation oncologist, Dr L and he mapped out a treatment plan And I start radiation on it tomorrow afternoon (in addition to the radiation I am already getting). We are going to pack the whole treatment into 5 days, I'll get my last treatment the morning we leave for Texas. Both Dr H and Dr L believe that radiating this tumor will have the best effect. If it were to be allowed to continue to grow it would begin compressing my spinal cord which would be very bad.
Once again, pain has saved me from what could have been a much worse situation. Although, I would really like for a different symptom next time I need tipped off about something. So that is why my Tuesday was so bad. I feel like I take one step forward and cancer kicks me and sends me back 2 steps. I truly believe that I will frond the answers I am looking for in Texas. And I am very eager to get there and see what they have to say.
Monday, August 8, 2011
Questions Answered & Second Opinions
We just got home from seeing Dr H (my oncologist). Today's appointment was long! A few different things were accomplished, I had blood work done (there are lots of levels that are a little low), I had a bone building treatment done, and a lot of questions were answered. The questions weren't all ours though, my parents and Erin went with us today. They all had lots of questions that Joe & I couldn't answer, and we thought it would be best to just have Dr H answer them.
A few of the new things we learned today are...
*NETS does not usually respond to chemo...WHAT?!?!?!?! Are you as confused as we were yet? When I was in the hospital for my surgery, my roommate also had NETS and she was told she would not get chemo because NETS doesn't respond to chemotherapy. My mom just happened to mention that to Dr H today and he looked at her and said "that's correct, it does not". He went on to say that when he discussed my case with other doctors back in December he was basically told "good luck" when he said he was going to do chemo. But for me it worked! We now know that it did not completely work (my cancer is back), but it worked to the point that I am still alive, my cancer is not as bad as it was last fall, and that it kept the cancer from spreading to anywhere other than my skeletal system. I have NETS in the most unusual way (Dr H reminds me how rare my case is) and it responded in an unusual way to chemo. God is truly at work.
*As of right now, I will be doing chemo again. I am scheduled to get a port (YUCK!!!) and start 3 new chemo drugs in 6-8 weeks (once I am healed from surgery and have recovered from radiation). I am not looking forward to more chemo. My hope is that after radiation when I get a repeat PET scan that it will show all my tumors are gone and I won't need the chemotherapy!
*Dr H also suggested I get a second opinion. He said he encourages all his patients to get second opinions (I was in such desperate need of treatment last December it was never brought up). He also said that because I am such a rare case, he would really like more opinions on treatment options and such to make sure he is making the best decisions. So as of right now, we are planning on getting a second opinion and are looking into 2 options (one is in New York City and the other is in Houston, TX). Dr H suggested both hospitals and Erin had actually mentioned both to us previously about possible second opinions.
So, what are we going to be doing over the next 6-8 weeks? I have approximately 2 more weeks of surgery recovery before I can start radiation (if I can travel we'll get our second opinion during this time), then I will have 2 weeks of radiation therapy, and then 2-3 weeks of recovery from radiation (if I couldn't travel earlier then this is when we'll get the second opinion), then a PET scan and I'll start chemo.
And what can you all do over the next 6-8 weeks? Pray! Please pray lots and lots for me, our entire family, for the doctors that will be looking at my file soon, for tumors to go away, for blood levels to return to normal, and for the radiation to finish off what is left of the tumor in my pelvis. Whew! That's quite a list :o)
Thanks again to everyone that has prayed for us, brought us meals, and has watched our kiddos! You are all amazing people!
A few of the new things we learned today are...
*NETS does not usually respond to chemo...WHAT?!?!?!?! Are you as confused as we were yet? When I was in the hospital for my surgery, my roommate also had NETS and she was told she would not get chemo because NETS doesn't respond to chemotherapy. My mom just happened to mention that to Dr H today and he looked at her and said "that's correct, it does not". He went on to say that when he discussed my case with other doctors back in December he was basically told "good luck" when he said he was going to do chemo. But for me it worked! We now know that it did not completely work (my cancer is back), but it worked to the point that I am still alive, my cancer is not as bad as it was last fall, and that it kept the cancer from spreading to anywhere other than my skeletal system. I have NETS in the most unusual way (Dr H reminds me how rare my case is) and it responded in an unusual way to chemo. God is truly at work.
*As of right now, I will be doing chemo again. I am scheduled to get a port (YUCK!!!) and start 3 new chemo drugs in 6-8 weeks (once I am healed from surgery and have recovered from radiation). I am not looking forward to more chemo. My hope is that after radiation when I get a repeat PET scan that it will show all my tumors are gone and I won't need the chemotherapy!
*Dr H also suggested I get a second opinion. He said he encourages all his patients to get second opinions (I was in such desperate need of treatment last December it was never brought up). He also said that because I am such a rare case, he would really like more opinions on treatment options and such to make sure he is making the best decisions. So as of right now, we are planning on getting a second opinion and are looking into 2 options (one is in New York City and the other is in Houston, TX). Dr H suggested both hospitals and Erin had actually mentioned both to us previously about possible second opinions.
So, what are we going to be doing over the next 6-8 weeks? I have approximately 2 more weeks of surgery recovery before I can start radiation (if I can travel we'll get our second opinion during this time), then I will have 2 weeks of radiation therapy, and then 2-3 weeks of recovery from radiation (if I couldn't travel earlier then this is when we'll get the second opinion), then a PET scan and I'll start chemo.
And what can you all do over the next 6-8 weeks? Pray! Please pray lots and lots for me, our entire family, for the doctors that will be looking at my file soon, for tumors to go away, for blood levels to return to normal, and for the radiation to finish off what is left of the tumor in my pelvis. Whew! That's quite a list :o)
Thanks again to everyone that has prayed for us, brought us meals, and has watched our kiddos! You are all amazing people!
Saturday, July 30, 2011
Relapse
Of all the news I got yesterday from my oncologist, the only thing that actually made me cry was the word "relapse". Not the news of new tumors or even of the possibility of chemo. It was just a simple word that broke me. I can't tell people I beat cancer anymore. I can't say that I won. I can't use the wonderful words "cancer free" to describe myself. My cancer has relapsed. I have cancer again.
Now, I am not discouraged by it. I had actually anticipated having to deal with cancer again...but I thought it would be years and years and years from now. Not 3 months after I finished fighting it the first time. I am ready to deal with whatever my body has to. Although the idea of more chemo is NOT something that I want to think about, if that's what I need to do, then that's what I'll do. If I must lose the precious little bit of hair that has grown back, then fine...it'll grow back again (and this time I know how long it will take). Although it kills me to miss out on so much with my kids when I'm not feeling well, I know that this short time in their life won't even compare to the years I get to spend with them afterwards. I don't doubt with even a single fiber of my being that I won't beat this again. Its just the road I have to take to get there that isn't so pleasant.
I thought everyone might like to know exactly what we know as of right now. My PET scan from last week showed that I have multiple new small tumors on the bones in my pelvis (new as in weren't there during my last PET scan last December). They are small, but the surgeon who removed my tumor last week was still able to see them during my surgery. The good news about the tumors (yes, I guess you can have good news about tumors) is that they are on my bone. What I mean is that, the cancer is still only in and on my bones, it hasn't spread to any organs or other parts of my body. Its still confined.
The other thing we know is that although they were not able to remove all of the larger tumor last week and I will have radiation to treat it, the biopsy results showed some good and some bad things. The good things are that it was extremely necrotic (dead) and had very little live cells left. That means that the chemo I had worked its magic on that tumor. Had it not been loosely attached to my nerve, it probably wouldn't have had to be removed. The biopsy also showed that although it still was not a typical neuroendocrine tumor, it was indeed NETS. That's good, because it means I don't have a second type of cancer. Unfortunately, it took a PET scan, surgery and a biopsy to convince my doctors that I was experiencing the same pain as last fall and that I thought this tumor was the source of all my back and leg pain then & now.
I don't have an appointment with my oncologist until August 8 (what a long wait). Then we'll come up with a plan for how to proceed. Until then I could use some prayers for recovery from my surgery and calm & peace for our family over the next week.
Now, I am not discouraged by it. I had actually anticipated having to deal with cancer again...but I thought it would be years and years and years from now. Not 3 months after I finished fighting it the first time. I am ready to deal with whatever my body has to. Although the idea of more chemo is NOT something that I want to think about, if that's what I need to do, then that's what I'll do. If I must lose the precious little bit of hair that has grown back, then fine...it'll grow back again (and this time I know how long it will take). Although it kills me to miss out on so much with my kids when I'm not feeling well, I know that this short time in their life won't even compare to the years I get to spend with them afterwards. I don't doubt with even a single fiber of my being that I won't beat this again. Its just the road I have to take to get there that isn't so pleasant.
I thought everyone might like to know exactly what we know as of right now. My PET scan from last week showed that I have multiple new small tumors on the bones in my pelvis (new as in weren't there during my last PET scan last December). They are small, but the surgeon who removed my tumor last week was still able to see them during my surgery. The good news about the tumors (yes, I guess you can have good news about tumors) is that they are on my bone. What I mean is that, the cancer is still only in and on my bones, it hasn't spread to any organs or other parts of my body. Its still confined.
The other thing we know is that although they were not able to remove all of the larger tumor last week and I will have radiation to treat it, the biopsy results showed some good and some bad things. The good things are that it was extremely necrotic (dead) and had very little live cells left. That means that the chemo I had worked its magic on that tumor. Had it not been loosely attached to my nerve, it probably wouldn't have had to be removed. The biopsy also showed that although it still was not a typical neuroendocrine tumor, it was indeed NETS. That's good, because it means I don't have a second type of cancer. Unfortunately, it took a PET scan, surgery and a biopsy to convince my doctors that I was experiencing the same pain as last fall and that I thought this tumor was the source of all my back and leg pain then & now.
I don't have an appointment with my oncologist until August 8 (what a long wait). Then we'll come up with a plan for how to proceed. Until then I could use some prayers for recovery from my surgery and calm & peace for our family over the next week.
Sunday, June 5, 2011
Visiting SC
Before we met my family for vacation, Joe & the kids and I drove down to SC to have a quick visit with friends. We don't regret our decision to move back to Ohio, but sometimes we really miss living in South Carolina and our friends there. We hadn't been there to visit in 2 years and that trip was less than 24 hours, so we were long over due for a visit. Unfortunately, this one was also a quick visit (just 48 hours) and we weren't able to see all our friends. It was a last minute decision to go since we weren't sure if we would be able to with my issues and Will's recent heart cath. We stayed with our friends Nick & Mandy. What's great about staying with them is they have a little girl who's 3 and their son is 7 months, so the kids had a blast playing with them!
Our only full day there, we went to downtown Charleston (which just happened to also be my birthday). We had lunch at the Noisy Oyster, visited the South Carolina Aquarium (Nick & Mandy have a family pass so we got in free!), and walked around downtown. It was a FANTASTIC day for walking around! The temp topped out at only 84 degrees and it was slightly overcast and breezy, so much nicer than the normal 90's and sunny and humid and you sweat just standing still.
Sadly, there was some major camera fail going on the day we were downtown. My camera would randomly stop focusing. I couldn't get it to work on the automatic or manual settings, so I didn't get to take a lot of the pictures I really wanted to. I can't wait until our next visit to SC, hopefully this time it won't be so long between trips!
Our only full day there, we went to downtown Charleston (which just happened to also be my birthday). We had lunch at the Noisy Oyster, visited the South Carolina Aquarium (Nick & Mandy have a family pass so we got in free!), and walked around downtown. It was a FANTASTIC day for walking around! The temp topped out at only 84 degrees and it was slightly overcast and breezy, so much nicer than the normal 90's and sunny and humid and you sweat just standing still.
Feeding the sting rays.
We very often heard "Hey Julianna" or "C'mon Taylor"...these 2 loved being together!
We let Julianna splash in the fountain at Waterfront Park.
Sunday, May 22, 2011
Thursday, May 12, 2011
Grow Aorta, Grow!
Its always so nice to be home after being in the hospital, but especially so when you're there for your kiddos. Will's heart cath went really well. Several people that were in the cath lab for it commented on what a great job he did. He didn't fuss when they took him back, and sat there watching everything while they did some more prep work. They said he didn't even mind the mask when they put it on him.
In the waiting room after signing in.
I was impressed that he wasn't even cranky from not getting anything to eat. :o)
In the cath lab waiting area.
Although he did really well during the cath, the news we got afterwards wasn't all that great. We found out he has bilateral femoral vein occlusion (both veins in his legs have been damaged and they cannot be used for caths...I guess this really isn't a big deal and happens in a lot in kids that have had IV's or caths in thier legs as infants). They also found out he has some kidney abnormalities. Instead of one output or "tube" going from each kidney to his bladder, he has 2 from each kidney. After talking with nephrology, Dr W called us last night and said it wasn't a concern and just increases his risk of UTI's and kidney infections. But the most disappointing news was that the balloon angioplasty of his aorta (the section where he had his coarc repair) was unsuccessful.
Still groggy from the anaesthesia.
When they ballooned the aorta, instead of staying open wide, it shrank right back down to where it was. Most of his aorta is 8mm across (pretty normal size), but there is a long section (long as in not just a single location) that is only 4mm across.
Trying to tie his monitor wires in his gown so they would quit getting wrapped around his legs.
The good news is that the cath showed the gradient (difference in his pressure before the narrowed section and after it) was not as bad as the echo showed. So, that means for now he will just get monitored. If there is a change in his blood pressure (they take it in his right arm and then in his leg and compare the two) or any other symptoms worsen, then we'll be looking at most likely another surgery.
This is how most of his pictures look, all blurred because he wouldn't stay still!
They didn't really discuss much about surgery since he's just being monitored, but anytime surgery is mentioned for a heart kiddo its super scary.
Ready to be discharged.
Dr W told Will yesterday that he needs to tell his transverse aorta to grow so he wouldn't have to see him again except for a visit. So we'll be praying for Will's transverse aorta to grow.
Praying lots.
Thursday, May 5, 2011
Today's the Day...
...that I will get to hear the words "complete remission". I just know it. I meet with Dr H this afternoon to get the results from last week's bone marrow biopsy and I know the last 2 rounds of chemo did their job and kicked my cancer's behind.
I am ready to be done with this whole thing and move on. We have the March for Babies on Saturday, Will's heart cath next Tuesday and then the end of the month...we go on VACATION! I cannot tell anyone how much we NEED a vacation! I'm so excited to go to the beach (with a hat and sunscreen on my head of course!) and see all our friends in SC!
I know today's appointment will lift a huge weight off my shoulders, Joe's shoulders, and those of our families as well. So if you have a spare minute today, please say a prayer that I get the wonderfully good news I am waiting to hear. :o)
I am ready to be done with this whole thing and move on. We have the March for Babies on Saturday, Will's heart cath next Tuesday and then the end of the month...we go on VACATION! I cannot tell anyone how much we NEED a vacation! I'm so excited to go to the beach (with a hat and sunscreen on my head of course!) and see all our friends in SC!
I know today's appointment will lift a huge weight off my shoulders, Joe's shoulders, and those of our families as well. So if you have a spare minute today, please say a prayer that I get the wonderfully good news I am waiting to hear. :o)
Thursday, April 14, 2011
1 Year Later
Yesterday marked 1 year since Will's heart surgery. In some ways I can't believe that a year has passed and other times it feels as though its been 10 years since that day. Today, ill had a check-up with Dr Awesome. He hadn't had a cardiology appointment since November, so that meant the usual blood pressures and EKG, but also an echo.
Will's BP was pretty high in his right arm (always been slightly higher due to his coarc), like, high for an adult high, but Dr Awesome wasn't too concerned because Will was pretty upset right before they took his blood pressure. But he didn't want to rule it out as a sign of a problem either. His EKG looked superb :o) His exam went well and Dr Awesome was happy with how well he looks. He did say his murmur (the noise due to his coarc) was pretty loud, but again said he needed an echo to see if it was a sign of a problem. So we went for an echo...boy, oh boy is it hard to keep a 1 year old still for a 45 minute long echo!
A rattle, a light up toy, Elmo in Grouchland, a baby cell phone, a bottle of juice, his socks, goldfish and a book helped us keep him relatively calm during the echo. He actually did better than I anticipated and only grabbed the wires once. The echo showed us good things and bad things.
The good was that his heart is still functioning normally! The left ventricle is still working and not over-working, his aortic valve is still opening well, his mitral valve stenosis is still considered mild and the left side of his heart is growing normally (nothing is too small). It also showed that his aorta has grown! There was a section of his aorta that could not be repaired during his surgery last April and as of November it was still not growing the way it should. It was still very small and causing some pressure issues. If it did not start to grow with him, there wasn't really anything they could have done for it. But it DID grow! A lot!
There is narrowing at the point where he had his coarctation repair. We knew this was a possibility (I think its something like 20% of babies that have a coarc repair have re-narrowing). So next Wednesday, Dr Awesome is going to get the opinions of the other cardiologists, the surgeons, etc.. to see if they feel Will should have a heart cath. Dr Awesome says he feels Will should have one before too long to try to balloon the narrowing section, but always likes to have other opinions.
So next week will be a big week for our family. Monday, we find out what's next for me (when biopsies and test will be and how often I will need check-ups, etc...) and on Wednesday, we'll find out if Will will be having another heart cath and how soon it will be. I asked Joe this morning how it feels to be the only medically sound person in our family...haha! His response was he may be medically sound, but mentally sound may be another thing now :o)
Will's BP was pretty high in his right arm (always been slightly higher due to his coarc), like, high for an adult high, but Dr Awesome wasn't too concerned because Will was pretty upset right before they took his blood pressure. But he didn't want to rule it out as a sign of a problem either. His EKG looked superb :o) His exam went well and Dr Awesome was happy with how well he looks. He did say his murmur (the noise due to his coarc) was pretty loud, but again said he needed an echo to see if it was a sign of a problem. So we went for an echo...boy, oh boy is it hard to keep a 1 year old still for a 45 minute long echo!
A rattle, a light up toy, Elmo in Grouchland, a baby cell phone, a bottle of juice, his socks, goldfish and a book helped us keep him relatively calm during the echo. He actually did better than I anticipated and only grabbed the wires once. The echo showed us good things and bad things.
The good was that his heart is still functioning normally! The left ventricle is still working and not over-working, his aortic valve is still opening well, his mitral valve stenosis is still considered mild and the left side of his heart is growing normally (nothing is too small). It also showed that his aorta has grown! There was a section of his aorta that could not be repaired during his surgery last April and as of November it was still not growing the way it should. It was still very small and causing some pressure issues. If it did not start to grow with him, there wasn't really anything they could have done for it. But it DID grow! A lot!
There is narrowing at the point where he had his coarctation repair. We knew this was a possibility (I think its something like 20% of babies that have a coarc repair have re-narrowing). So next Wednesday, Dr Awesome is going to get the opinions of the other cardiologists, the surgeons, etc.. to see if they feel Will should have a heart cath. Dr Awesome says he feels Will should have one before too long to try to balloon the narrowing section, but always likes to have other opinions.
So next week will be a big week for our family. Monday, we find out what's next for me (when biopsies and test will be and how often I will need check-ups, etc...) and on Wednesday, we'll find out if Will will be having another heart cath and how soon it will be. I asked Joe this morning how it feels to be the only medically sound person in our family...haha! His response was he may be medically sound, but mentally sound may be another thing now :o)
Thursday, April 7, 2011
Subscribe to:
Posts (Atom)