These days I love to share my little triumphs. Here's a few of the latest (if you haven't heard about them yet)...
*The last 2 rounds of chemo have been accompanied by dramatically lessened side effects. I didn't take a single anti-nausea pill after this past Monday's treatment! This definitley makes me dread each treatment less :o)
*I'm still exhausted most of the time, but my mornings seem to bring a little more energy. I take that time to play with the kiddos. I even got on the floor inside a tent with Will not long ago! Until recently, if I got on the floor I literally had to have someone pick me up.
*My muscles are slowly regaining strength. Due to being on a steroid for way too long, I lost a ton of muscle strength. When I came home from Texas I couldn't even go up any stairs. Not only can I now go up stairs (and I just started doing it by alternating feet like a normal person), but I CAN PICK UP WILL! I haven't been able to pick him up since December. It is so hard to not be able to pick your child, especially when he is a crazy daredevil that gets hurt a ton and you want nothing more than to pick him up and comfort him. I can't carry him around, but I can at least pick him up and hug him :o)
*Tomorrow, we're having a building party. Several of our family members are coming over to help finish installing a fence around our backyard. Why is this a triumph? I can't take the kids outside without another adult because I can't run or chase after Will. Although our street has a low speed limit, cars speed all the time and Will does not stay in the backyard and he does not listen when told to stop. Once the fence is up, I can take the kids outside and not have to worry about Will running into the street. A little bit of parenting independence...triumph.
Those are just a few of the little triumphs I've been celebrating. I plan on celebrating many more as the weeks go on!
Friday, May 4, 2012
Wednesday, April 18, 2012
Long Time No Writing
I know, I know, its been forever since I've posted. Its a good thing though. I have been enjoying my time at home so much that I just haven't gotten on the internet. I check Facebook on my phone, but today is the first time I have used my laptop since February.
So what's been going on since my last post? I have been doing really well actually! Ok, so I have the nasty side effects of my chemo, but they are much more tolerable here at home than if I was in Texas. Thanks to Joe and my sister, we were able to find an oncologist here at home that was willing to work with Dr Z. So I have been seeing Dr G since I've been home. He's very aggressive with my treatments and keeps a close eye on my counts (which completely bottomed out about 2 weeks ago). I really like him!
I have also gotten a port. Its basically a permanent IV access just under my skin on my chest. It saves my poor veins from more damage, but it was definitely not fun having it placed. Its finally getting less tender and not as painful to have it accessed.
The best news of all...I went back to Texas for scans and to see Dr Z last month and my scans showed a dramatic improvement in my tumors! 2 lymph nodes that were so large you could see the bumps had shrunk back to normal and you can't see or feel them anymore! It was definitely an exciting trip to Texas (short too...only 3 days!).
The kids have been doing great, they like having mommy home, even if I am just sitting and watching them play. Julianna has been doing great at school and at her physical therapy. Will...well Will is a maniac. :o) He is all boy and does everything at 90 miles per hour.
I am so glad to be getting treatments here at home, I love seeing Joe and the kids every day!
So what's been going on since my last post? I have been doing really well actually! Ok, so I have the nasty side effects of my chemo, but they are much more tolerable here at home than if I was in Texas. Thanks to Joe and my sister, we were able to find an oncologist here at home that was willing to work with Dr Z. So I have been seeing Dr G since I've been home. He's very aggressive with my treatments and keeps a close eye on my counts (which completely bottomed out about 2 weeks ago). I really like him!
I have also gotten a port. Its basically a permanent IV access just under my skin on my chest. It saves my poor veins from more damage, but it was definitely not fun having it placed. Its finally getting less tender and not as painful to have it accessed.
The best news of all...I went back to Texas for scans and to see Dr Z last month and my scans showed a dramatic improvement in my tumors! 2 lymph nodes that were so large you could see the bumps had shrunk back to normal and you can't see or feel them anymore! It was definitely an exciting trip to Texas (short too...only 3 days!).
The kids have been doing great, they like having mommy home, even if I am just sitting and watching them play. Julianna has been doing great at school and at her physical therapy. Will...well Will is a maniac. :o) He is all boy and does everything at 90 miles per hour.
I am so glad to be getting treatments here at home, I love seeing Joe and the kids every day!
Thursday, February 2, 2012
Finally...Some Good News!
On Tuesday, I got the best news I have gotten since May. My CT scan showed all my tumors have gotten smaller after just one round of chemo! One tumor that was in a muscle has even completely disappeared! None of the fluid build up I was having is returning. And my blood levels have all returned to a normal level (still low normal, but normal). The only negative news I got was that 1 tumor is not responding to the chemo and has grown. 3 weeks ago it was a 10 cm and Tuesday's scan showed it has grown to just over 12 cm.
This has pretty much stumped Dr Z. So he decided he wants a biopsy of it to get a better idea of what we're dealing with. Unfortunately, the soonest I could get in for a biopsy was next Wednesday, so that means another week here in Texas. The biopsy will be next Wednesday, I'll spend Thursday just relaxing, Friday I'll see Dr Z and then hopefully fly home on Saturday. That would give me about a week and a half before I have to be back in Texas again.
I was also finally able to get my second round of chemo yesterday. After some major scheduling disasters I finally got in and got started. I'm glad its over. I'm feeling relatively good today, just a little yucky. I was going to walk to the grocery store, but started the walk and realized I just wasn't up to it, so my wonderful mom went by herself. We are in desperate need of groceries considering we thought we'd be flying home today.
The other big thing happening this week is that Will has a cardiology appointment today. I really wish I was there for it, I get so nervous for his appointments since Dr P said its just a matter of time before Will will probably need another surgery for his coarctation. I'll be on pins and needles all day until I hear from Joe.
I also have to say how proud I am of Julianna. Since she turned 4, she has not cried a single time she has been dropped off at school. She told Joe today that only 3 year olds cry when they go to school. 4 year olds are big kids and don't cry. She is growing up so fast!
I miss both my kiddos so much, but knowing this chemo is working makes things much easier this time around. I think knowing things are finally going in the right direction can make anything seem better.
This has pretty much stumped Dr Z. So he decided he wants a biopsy of it to get a better idea of what we're dealing with. Unfortunately, the soonest I could get in for a biopsy was next Wednesday, so that means another week here in Texas. The biopsy will be next Wednesday, I'll spend Thursday just relaxing, Friday I'll see Dr Z and then hopefully fly home on Saturday. That would give me about a week and a half before I have to be back in Texas again.
I was also finally able to get my second round of chemo yesterday. After some major scheduling disasters I finally got in and got started. I'm glad its over. I'm feeling relatively good today, just a little yucky. I was going to walk to the grocery store, but started the walk and realized I just wasn't up to it, so my wonderful mom went by herself. We are in desperate need of groceries considering we thought we'd be flying home today.
The other big thing happening this week is that Will has a cardiology appointment today. I really wish I was there for it, I get so nervous for his appointments since Dr P said its just a matter of time before Will will probably need another surgery for his coarctation. I'll be on pins and needles all day until I hear from Joe.
I also have to say how proud I am of Julianna. Since she turned 4, she has not cried a single time she has been dropped off at school. She told Joe today that only 3 year olds cry when they go to school. 4 year olds are big kids and don't cry. She is growing up so fast!
I miss both my kiddos so much, but knowing this chemo is working makes things much easier this time around. I think knowing things are finally going in the right direction can make anything seem better.
Monday, January 23, 2012
Crazy 2 Weeks
The last 2 and a half weeks have been absolutely CRAZY! Life has been an whirlwind and its hard to remember everything that's happened (partially because I was super medicated for some of it), but I'm going to try to fill everyone in on what's been going on.
Since Thanksgiving I have been having some pretty crazy stomach issues, which included some pretty major water retention and the expansion of my belly. The first week of January my belly got huge...I mean I looked 9 months pregnant huge and couldn't fit in any of my clothes. I started having a lot of back pain and was just miserable in general. On January 5, I decided to go to the ER because I was in so much pain and Dr Z wanted me to make sure I didn't have some sort of obstruction causing all the problems.
In the ER, they got my pain to at least a manageable level and did some tests that showed I had mild pancreatitus. The ER doctor decided I should be transferred to the clinic and admitted for pain management. After a long day in the ER, I was finally transferred at 3am to the hospital where Dr H is. We thought this was the best idea considering I was supposed to meet with him the next day and then start the chemo regimen that Dr Z had chosen. Boy were we wrong.
Dr H completely disappointed us and we have since decided not to work with him or the clinic anymore. First off, I was so full of medication that I don't remember much of my hospital stay or even the next few days after I was discharged, but I do remember how upsetting Dr H's conversations were. He refused to do Dr Z's treatment, he wanted to do his own treatment and after 2 weeks if it wasn't working he said we would need to discuss hospice care. WHAT?!?!?! I didn't want his treatment I wanted the one Dr Z had explained to me and I am so not in any shape to discuss hospice care!! I am still quite healthy, you know besides the cancer thing...lol (oh, while there, they did remove almost 2 liters of fluid from my stomach which made a huge difference...we learned the fluid build up is a defense mechanism of my body's against my tumors)
So we said good-bye to Dr H and the Clinic on Friday and on Sunday Joe, my mom, my dad and I flew back to Texas. I only vaguely remember flying down here at all, the Clinic had me on so many drugs while there I still felt the effects days later. We met with Dr Z on Tuesday the 10, and I had my first chemo session that evening. It was a LATE night, I finished my chemo at 1am! On Wednesday, I didn't feel very good at all, but assumed it was the affects of the chemo. I didn't sleep at all on Wednesday night, I was up in a lot of pain (my back again) and my stomach had gotten bloated again. By Thursday morning, I was feeling very short of breath and we all decided I should go to MDA's ER.
I got there at 9am and after a little while they got my pain under control again (and I wasn't out of it) and they did a bunch of tests which determined I had a large amount of fluid built up in my stomach again and that I also had some in my lungs and had pneumonia. So it was decided I would be admitted, I just had to wait for a room. I spent 32 hours in the ER waiting for a room, my mom slept in a chair beside me and Joe and my dad slept in the waiting room. That was an awful night. I was in pain a lot and short of breath and had multiple panic attacks. That was the first time I have ever had a panic attack and wow they are not fun.
On Friday, after I got my room, I had 2.2 more liters removed from my stomach and immediately felt some relief in both my pain and my breathing. I spent the next 5 days in the hospital getting IV antibiotics, adjusting pain meds, trying to get my blood levels under control, getting my crazy high blood pressure controlled, and a few other things including a blood transfusion. I am still trying to recover from the hospital stay, I'm still pretty weak and get tired really easily, but every day I'm a little better. Due to blood counts, I had to skip my second chemo session. I ended up getting another blood transfusion and 3 more nupogen shots (shots to stimulate white blood cells). Hopefully, when they check my counts on Tuesday I'll be able to have my 3rd session.
If I have my 3rd session on Tuesday, then we will hopefully be flying home on Thursday and I won't have to be back here until February 6. We're currently working on trying to find an oncologist back in Ohio that is willing to give me Dr Z's treatments. If we can't find one, then I will be moving back to Texas because my treatments are every week for 3 weeks, then 1 week off (so prayers we find a cooperative oncologist are greatly appreciated!).
So that's how the last few weeks have gone. Crazy. We've cut our ties with my original oncologist and the Clinic, got plane tickets and another apartment and came to Texas with 24 hours notice, I've started my chemo, had pneumonia, was hospitalized twice, had 4 liters of fluid removed from my stomach (its stayed away so far, which is a small sign the chemo is working), and am waiting to find out where I will be getting my chemo from now on. Phew...I think I need a vacation.
Since Thanksgiving I have been having some pretty crazy stomach issues, which included some pretty major water retention and the expansion of my belly. The first week of January my belly got huge...I mean I looked 9 months pregnant huge and couldn't fit in any of my clothes. I started having a lot of back pain and was just miserable in general. On January 5, I decided to go to the ER because I was in so much pain and Dr Z wanted me to make sure I didn't have some sort of obstruction causing all the problems.
In the ER, they got my pain to at least a manageable level and did some tests that showed I had mild pancreatitus. The ER doctor decided I should be transferred to the clinic and admitted for pain management. After a long day in the ER, I was finally transferred at 3am to the hospital where Dr H is. We thought this was the best idea considering I was supposed to meet with him the next day and then start the chemo regimen that Dr Z had chosen. Boy were we wrong.
Dr H completely disappointed us and we have since decided not to work with him or the clinic anymore. First off, I was so full of medication that I don't remember much of my hospital stay or even the next few days after I was discharged, but I do remember how upsetting Dr H's conversations were. He refused to do Dr Z's treatment, he wanted to do his own treatment and after 2 weeks if it wasn't working he said we would need to discuss hospice care. WHAT?!?!?! I didn't want his treatment I wanted the one Dr Z had explained to me and I am so not in any shape to discuss hospice care!! I am still quite healthy, you know besides the cancer thing...lol (oh, while there, they did remove almost 2 liters of fluid from my stomach which made a huge difference...we learned the fluid build up is a defense mechanism of my body's against my tumors)
So we said good-bye to Dr H and the Clinic on Friday and on Sunday Joe, my mom, my dad and I flew back to Texas. I only vaguely remember flying down here at all, the Clinic had me on so many drugs while there I still felt the effects days later. We met with Dr Z on Tuesday the 10, and I had my first chemo session that evening. It was a LATE night, I finished my chemo at 1am! On Wednesday, I didn't feel very good at all, but assumed it was the affects of the chemo. I didn't sleep at all on Wednesday night, I was up in a lot of pain (my back again) and my stomach had gotten bloated again. By Thursday morning, I was feeling very short of breath and we all decided I should go to MDA's ER.
I got there at 9am and after a little while they got my pain under control again (and I wasn't out of it) and they did a bunch of tests which determined I had a large amount of fluid built up in my stomach again and that I also had some in my lungs and had pneumonia. So it was decided I would be admitted, I just had to wait for a room. I spent 32 hours in the ER waiting for a room, my mom slept in a chair beside me and Joe and my dad slept in the waiting room. That was an awful night. I was in pain a lot and short of breath and had multiple panic attacks. That was the first time I have ever had a panic attack and wow they are not fun.
On Friday, after I got my room, I had 2.2 more liters removed from my stomach and immediately felt some relief in both my pain and my breathing. I spent the next 5 days in the hospital getting IV antibiotics, adjusting pain meds, trying to get my blood levels under control, getting my crazy high blood pressure controlled, and a few other things including a blood transfusion. I am still trying to recover from the hospital stay, I'm still pretty weak and get tired really easily, but every day I'm a little better. Due to blood counts, I had to skip my second chemo session. I ended up getting another blood transfusion and 3 more nupogen shots (shots to stimulate white blood cells). Hopefully, when they check my counts on Tuesday I'll be able to have my 3rd session.
If I have my 3rd session on Tuesday, then we will hopefully be flying home on Thursday and I won't have to be back here until February 6. We're currently working on trying to find an oncologist back in Ohio that is willing to give me Dr Z's treatments. If we can't find one, then I will be moving back to Texas because my treatments are every week for 3 weeks, then 1 week off (so prayers we find a cooperative oncologist are greatly appreciated!).
So that's how the last few weeks have gone. Crazy. We've cut our ties with my original oncologist and the Clinic, got plane tickets and another apartment and came to Texas with 24 hours notice, I've started my chemo, had pneumonia, was hospitalized twice, had 4 liters of fluid removed from my stomach (its stayed away so far, which is a small sign the chemo is working), and am waiting to find out where I will be getting my chemo from now on. Phew...I think I need a vacation.
Saturday, December 17, 2011
Past Due Blog Update
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!
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!
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...)
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