I thought I would update my blog with the little bit of news that I have. I am scheduled to have my brain surgery next Wedneday (Aug 8th) - which just happens to be Kurt and my 14th wedding anniversary! We will meet with the neurosurgeon again on August 7th for pre-op stuff.
I had an appointment with my oncologist yesterday (7/31). Basically we just went through some of the many options of medications (chemo drugs, etc) that are available. I won't start any of that until after I have the brain surgery and radiation. In fact, I will have another PET scan at the end of August and then we will determine from there what medication route I should take. She did talk about a 1st stage clinical trial that is going on down in Detroit currently and is showing pretty good results. Since it is already going, I don't think I would be able to get in on it currently but that is always an option as well.
I find some comfort in knowing that there are 'options'. When I was diagnosed in May of 2011, there wasn't many (if any) FDA approved drug treatments specific to melanoma and now there are several. This offers hope that they are continuously working on a cure for this devastating cancer!
In my last blog I wrote about a couple that we met while I was waiting to have my MRI. I received a message from the man - I plan to call him this weekend to see how he is doing. It will be nice to talk to someone who knows exactly what we are going through!
And, I'm excited to report that I have gone back to work! Last week I did three days part-time and this week I am working the whole week but only until I get tired. I don't want to stress my body out before surgery. I will work Monday next week and then will be off until I am told I can go back to work after surgery. It's been nice to be back doing something 'normal'.
If I don't blog again before my surgery, I will make sure that Kurt does a 'guest' blog when I am done with my surgery!
I continue to believe....
visitors to this page
Wednesday, August 1, 2012
Thursday, July 19, 2012
Medical "History" In the Making? - 07/18/2012
On Monday (7/16), Kurt and I met with my neurosurgeon to discuss options for the new brain tumor. He indicated that there is a newly FDA approved surgery for brain tumors that are deeper in the brain; previously, the only option for these tumors was radiation. He is one of three doctors in the United States to be trained in this procedure that has been being done in Canada. We were told that this surgery would provide a greater chance of getting the majority of tumor out and then I would have the stereotactic radiation which could 'zap' any cells that might have been missed by the surgery. The doctor told us to think about what I wanted to do and let him know. I ended up leaving his office and having another MRI - this would help map the surgery and/or the radiation anyway.
While in the waiting room at the MRI area, Kurt and I started to talk to a woman who was there waiting for her husband. We found out that her husband was also diagnosed with melanoma in 2006 and has been fighting metastatic melanoma for approximately two years. (He also has brain METS, tumors in other areas of his body as well as knee replacement due to tumor deteriation of that area from melanoma.) I went in for my MRI but Kurt was able to talk to them for the majority of the time I was in. We did not get their names or information on how to contact them - after discussing this further, Kurt talked to my neurosurgeon about giving them our names and contact information so that we could stay in touch as our medical history is so similar. Our neurosurgeon's office will be in touch with them - hopefully we will be able to get back in touch with them and continue to share our experiences with each other!
On Wednesday morning (7/18), I received a call from the neurosurgeon's nurse to see if I had decided what I wanted to do regarding the surgery. I let him know that I was leaning towards the surgery - I figure it is the greatest chances of getting all of the tumor cells. He said he would start the scheduling process and would be in touch. Kurt and I then met with my radiation oncologist to discuss the stereotactic radiation. All three of my doctors have been in touch with each other and it sounded like all thought it would be a great option for me to have the surgery and then radiation. I was asked to go and see the neurosurgeon again after my appointment with the radiation oncologist.
We also found out new information from the radiation oncology office regarding stereotactic radiation. In the past, the process would be a day-long procedure were they would put a halo on your head, map the radiation during the day and then do the one-time radiation to that area. Now, they have a new machine and are able to do it using the mask like I previously had for the full-brain radiation. A few weeks after the brain surgery, they will have me come in and make a new mask; they will map out the radiation over the next few days and then I will go in at the end of the day and have the one-time radiation. While I did not enjoy having the mask, it is much better than having a halo put on again.
After the radiation appointment, we met with the neurosurgeon again. He spoke with the doctor from Canada that he has been training under about my case and he also thought I was a good candidate for this surgery. We found out that there are only three doctors in the United States that are trained in this surgery (my neurosurgeon at MGH, a doctor at John's Hopkins and another doctor); we also found out that since FDA approval in the U.S., there has been only one surgery performed .... and it just happens it was performed in Marquette by my neurosurgeon. The doctor from Canada assisted in the surgery as well. So, basically... I will be the 2nd person in the United States to have this surgery! The neurosurgeon showed us the instruments they use for the surgery and we watched a video of a simulation surgery they did on a piece of clear gelatin (the 'brain') and a grape (the 'tumor'). Amazing what they could do to get the 'tumor' out! It appears that the recovery time is minimal - sounds like I will go to ICU for one day and then should be able to possibly go home after an MRI the following day. We will be scheduling this surgery within the next few weeks - the neurosurgeon will coordinate his schedule with the Canadian doctor's schedule so he can be here to assist again. (They are thinking it will be either August 7th or 8th but not yet positive on the date.)
We did find out that my tumor is small. It is in the back of my head and the area it could affect is my left vision. I have to go and have some more extensive vision testing done prior to surgery.
Since I won't be having surgery for a couple of weeks, I called my boss to see if I could go back to work on a part-time basis for the few weeks before surgery; I will also try to work part-time as I am able after surgery and with radiation. I will be going back to work for a few days next week! I am looking forward to it!
I will blog again as I find out more information about the upcoming surgery. I was asked if I am nervous about the surgery... I am sure as the day draws closer, I will be; I am more 'excited' to be able to be a part of history and learning!
And, I continue to believe!
While in the waiting room at the MRI area, Kurt and I started to talk to a woman who was there waiting for her husband. We found out that her husband was also diagnosed with melanoma in 2006 and has been fighting metastatic melanoma for approximately two years. (He also has brain METS, tumors in other areas of his body as well as knee replacement due to tumor deteriation of that area from melanoma.) I went in for my MRI but Kurt was able to talk to them for the majority of the time I was in. We did not get their names or information on how to contact them - after discussing this further, Kurt talked to my neurosurgeon about giving them our names and contact information so that we could stay in touch as our medical history is so similar. Our neurosurgeon's office will be in touch with them - hopefully we will be able to get back in touch with them and continue to share our experiences with each other!
On Wednesday morning (7/18), I received a call from the neurosurgeon's nurse to see if I had decided what I wanted to do regarding the surgery. I let him know that I was leaning towards the surgery - I figure it is the greatest chances of getting all of the tumor cells. He said he would start the scheduling process and would be in touch. Kurt and I then met with my radiation oncologist to discuss the stereotactic radiation. All three of my doctors have been in touch with each other and it sounded like all thought it would be a great option for me to have the surgery and then radiation. I was asked to go and see the neurosurgeon again after my appointment with the radiation oncologist.
We also found out new information from the radiation oncology office regarding stereotactic radiation. In the past, the process would be a day-long procedure were they would put a halo on your head, map the radiation during the day and then do the one-time radiation to that area. Now, they have a new machine and are able to do it using the mask like I previously had for the full-brain radiation. A few weeks after the brain surgery, they will have me come in and make a new mask; they will map out the radiation over the next few days and then I will go in at the end of the day and have the one-time radiation. While I did not enjoy having the mask, it is much better than having a halo put on again.
After the radiation appointment, we met with the neurosurgeon again. He spoke with the doctor from Canada that he has been training under about my case and he also thought I was a good candidate for this surgery. We found out that there are only three doctors in the United States that are trained in this surgery (my neurosurgeon at MGH, a doctor at John's Hopkins and another doctor); we also found out that since FDA approval in the U.S., there has been only one surgery performed .... and it just happens it was performed in Marquette by my neurosurgeon. The doctor from Canada assisted in the surgery as well. So, basically... I will be the 2nd person in the United States to have this surgery! The neurosurgeon showed us the instruments they use for the surgery and we watched a video of a simulation surgery they did on a piece of clear gelatin (the 'brain') and a grape (the 'tumor'). Amazing what they could do to get the 'tumor' out! It appears that the recovery time is minimal - sounds like I will go to ICU for one day and then should be able to possibly go home after an MRI the following day. We will be scheduling this surgery within the next few weeks - the neurosurgeon will coordinate his schedule with the Canadian doctor's schedule so he can be here to assist again. (They are thinking it will be either August 7th or 8th but not yet positive on the date.)
We did find out that my tumor is small. It is in the back of my head and the area it could affect is my left vision. I have to go and have some more extensive vision testing done prior to surgery.
Since I won't be having surgery for a couple of weeks, I called my boss to see if I could go back to work on a part-time basis for the few weeks before surgery; I will also try to work part-time as I am able after surgery and with radiation. I will be going back to work for a few days next week! I am looking forward to it!
I will blog again as I find out more information about the upcoming surgery. I was asked if I am nervous about the surgery... I am sure as the day draws closer, I will be; I am more 'excited' to be able to be a part of history and learning!
And, I continue to believe!
Monday, July 9, 2012
A Little Bump In the Road - 7/9/2012
I haven't blogged in awhile and, while I haven't been doing much, a lot has been happening.
I will start with my oncology appointment today. I had my 3 month MRI and PET scan last Tuesday. All of us spent a few days in Gwinn for the 4th of July; Kurt and Nathan came back to our house on the night of the 4th. Ashley and I stayed until Friday - with the extreme heat last week, it was nice to be in a home with central air. On Thursday, Kurt got a call from a nurse at my oncologist's office asking how I have been feeling. They said that my MRI showed some brain swelling and they wanted to make sure I wasn't having headaches. They also mentioned that I had persistent lesions but would not explain that any further than to say that my oncologist would discuss with me at my appointment on Monday. So, while this information was on our minds and a little stressful to think about, we tried not to think/stress about it to much. As I said to Kurt, they didn't have me come into the office until my scheduled appointment so I took that as "okay" news.
Today we met with the oncologist and she indicated that my MRI showed some brain swelling. I need to continue to stay on the steroid medication (I've been asking to get off because of weight gain, my continually growing beard :), my facial puffiness, etc). If I have any new symptoms such as headaches, etc., I need to let them know. My MRI also showed that one of my brain tumors - I'm thinking it is one that was there before but not positive - is small but has doubled in size from the last MRI. The other two appear to be stable. Because of the increase in size of the tumor, I have appointments next week to see both the neurosurgeon as well as the radiation oncologist. My guess is that they will do stereotactic radiation to that one brain tumor ... but we will find that out next week for sure.
My PET scan showed something in the liver but the oncologist wanted to discuss this further with the radiologist who read my last MRI and PET scan as two different radiologists can look at things a bit different. In any case, it is very small if there is something there and there is no new tumors. As far as my hip tumor, we cannot get a clear picture on that due to just having the surgery.
I am "on hold" as far as chemo goes. I will see the oncologist in 3 weeks after I am done with my treatment from the neurosurgeon/radiation oncologist. It didn't sound like I would be going back on the current chemo drug I have been taking since the brain tumor did grow - but I am not yet sure what my oncologist is thinking.
I AM OFFICIALLY CRUTCHLESS! Last night I took my first steps down our front stairs at our house. Each day is getting better and better as far as my healing from the femur surgery. I have been "sore" but not in pain and I feel like I am starting to walk better every day. (Oh, and for those not on facebook, I put status updates that Kurt took out my stitches - he did a great job - and Ashley has given me the shots in my stomach for blood clotting; nice to have two "nurses" to take care of me!)
On a personal (and non-medical) note, we've had lots going on - Kurt has been busy with our house remodel/construction, etc. We are adding a mud room and covered deck to the back of our house, putting in new windows/sliding door and putting up new siding. Our house looks like a mess right now but it will be an awesome addition and the new windows and siding will be great as well! (Since I haven't been able to help, Kurt told me I am a good supervisor!)
I will update my blog again after we meet with the doctors next week and have a better idea of what the next "bump in the road" is. Thanks for the thoughts! I continue to believe!
I will start with my oncology appointment today. I had my 3 month MRI and PET scan last Tuesday. All of us spent a few days in Gwinn for the 4th of July; Kurt and Nathan came back to our house on the night of the 4th. Ashley and I stayed until Friday - with the extreme heat last week, it was nice to be in a home with central air. On Thursday, Kurt got a call from a nurse at my oncologist's office asking how I have been feeling. They said that my MRI showed some brain swelling and they wanted to make sure I wasn't having headaches. They also mentioned that I had persistent lesions but would not explain that any further than to say that my oncologist would discuss with me at my appointment on Monday. So, while this information was on our minds and a little stressful to think about, we tried not to think/stress about it to much. As I said to Kurt, they didn't have me come into the office until my scheduled appointment so I took that as "okay" news.
Today we met with the oncologist and she indicated that my MRI showed some brain swelling. I need to continue to stay on the steroid medication (I've been asking to get off because of weight gain, my continually growing beard :), my facial puffiness, etc). If I have any new symptoms such as headaches, etc., I need to let them know. My MRI also showed that one of my brain tumors - I'm thinking it is one that was there before but not positive - is small but has doubled in size from the last MRI. The other two appear to be stable. Because of the increase in size of the tumor, I have appointments next week to see both the neurosurgeon as well as the radiation oncologist. My guess is that they will do stereotactic radiation to that one brain tumor ... but we will find that out next week for sure.
My PET scan showed something in the liver but the oncologist wanted to discuss this further with the radiologist who read my last MRI and PET scan as two different radiologists can look at things a bit different. In any case, it is very small if there is something there and there is no new tumors. As far as my hip tumor, we cannot get a clear picture on that due to just having the surgery.
I am "on hold" as far as chemo goes. I will see the oncologist in 3 weeks after I am done with my treatment from the neurosurgeon/radiation oncologist. It didn't sound like I would be going back on the current chemo drug I have been taking since the brain tumor did grow - but I am not yet sure what my oncologist is thinking.
I AM OFFICIALLY CRUTCHLESS! Last night I took my first steps down our front stairs at our house. Each day is getting better and better as far as my healing from the femur surgery. I have been "sore" but not in pain and I feel like I am starting to walk better every day. (Oh, and for those not on facebook, I put status updates that Kurt took out my stitches - he did a great job - and Ashley has given me the shots in my stomach for blood clotting; nice to have two "nurses" to take care of me!)
On a personal (and non-medical) note, we've had lots going on - Kurt has been busy with our house remodel/construction, etc. We are adding a mud room and covered deck to the back of our house, putting in new windows/sliding door and putting up new siding. Our house looks like a mess right now but it will be an awesome addition and the new windows and siding will be great as well! (Since I haven't been able to help, Kurt told me I am a good supervisor!)
I will update my blog again after we meet with the doctors next week and have a better idea of what the next "bump in the road" is. Thanks for the thoughts! I continue to believe!
Monday, June 18, 2012
Relay for Life 2012 / Update on Surgery - 6/16-6/17/2012
Kurt, Nathan, Ashley and I spent this past Saturday and Sunday at Al Quaal in Ishpeming for the American Cancer Society's Marquette County Relay for Life. I've went several years to sign up as a cancer survivor and walk for the survivor lap but we have never formed a team. This year Kurt formed the team "Jodi's Team Believe". While we did not raise a lot of money due to ALOT going on, it felt good to have a team. We also were supported by several people on our team as well as the team that staff at MARESA formed. While alot of the teams had things for sale or things to do to raise funds for the relay, we now have a better idea of what to expect and can start planning something to do to raise more funds for next year!
I'd personally like to thank Lori Waara (and her friend, Kim) for not only donating and coming out to walk, but THANK YOU so much Lori for the beautiful scrapbooked picture frame with pictures of me, my kids and Kurt and a post Kurt put to me about being a family as well as lyrics from "I'm Gonna Love You Through This" - WE LOVE IT!!! I will take a picture of it sometime soon and put it on here - I decided to do it now instead :)! (And, I was correct when I said my Auntie Kris would see it and start to tear up :) But I want her to know that it's okay to cry, Auntie!)
I'd also like to thank all of the people that stopped by to see us! (I'd put everyone down but I am afraid I would forget someone and feel really bad...) It was great to see everyone and it made the day go by SUPER fast ... I was REALLY tired by the end of the night.
I don't know how to explain the way that the Relay makes me feel... mostly that I am joined by other people with cancer and that I am not standing out because of it. It is an emotional day - lots of different emotions ... happiness to spend time with people I love, hope to see how many people have survived cancer, saddness to see all the luminaries for people who have passed away, etc. I listened to Cathy O'Donnell (not the Kathy O'Donnell that I work with at MARESA) who was the speaker for the survivor lap and I related to her cancer experience as she had young children when she was diagnosed. She spoke about how her children would go to school, she would sleep during the day and try to have as normal of a life when they got home. I cried!
I also wanted to write about some of the newest "family members" that I have acquired during this past year. I don't know how each of the staff members from the Hematology/Oncology and Radiation Oncology offices do their jobs each day but I am grateful for each and every one of them! They were there to raise money and support the many people they see in their offices. I've always said that each one of them has treated me like I am their sister, relative or part of their family and I am FOREVER grateful for them and their wonderful compassion towards their patients and families!!! They make it a lot easier for me to keep believing!
I will keep everyone updated as we start planning for the Relay for Life 2013.
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On another note, I just wanted to send out an update that while I was at the Relay, I physically just was not able to walk due to my recent leg/hip surgery to insert the rod in my femur. Poor Kurt had the fun of pushing me most everywhere in a wheelchair. Each day seems to be getting better and better with my healing. Today I decided I would try to "walk" without crutches ... I took several steps but definitely know that I need some assistance. It's been 12 days since my surgery and I realize it is going to take some time for walking normal but it felt good to not walk "with" crutches.
I'd personally like to thank Lori Waara (and her friend, Kim) for not only donating and coming out to walk, but THANK YOU so much Lori for the beautiful scrapbooked picture frame with pictures of me, my kids and Kurt and a post Kurt put to me about being a family as well as lyrics from "I'm Gonna Love You Through This" - WE LOVE IT!!! I will take a picture of it sometime soon and put it on here - I decided to do it now instead :)! (And, I was correct when I said my Auntie Kris would see it and start to tear up :) But I want her to know that it's okay to cry, Auntie!)
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| Thank you SO much, Lori Waara, for the beautiful scrapbooked picture frame! WE LOVE IT!!!! |
I'd also like to thank all of the people that stopped by to see us! (I'd put everyone down but I am afraid I would forget someone and feel really bad...) It was great to see everyone and it made the day go by SUPER fast ... I was REALLY tired by the end of the night.
I don't know how to explain the way that the Relay makes me feel... mostly that I am joined by other people with cancer and that I am not standing out because of it. It is an emotional day - lots of different emotions ... happiness to spend time with people I love, hope to see how many people have survived cancer, saddness to see all the luminaries for people who have passed away, etc. I listened to Cathy O'Donnell (not the Kathy O'Donnell that I work with at MARESA) who was the speaker for the survivor lap and I related to her cancer experience as she had young children when she was diagnosed. She spoke about how her children would go to school, she would sleep during the day and try to have as normal of a life when they got home. I cried!
I also wanted to write about some of the newest "family members" that I have acquired during this past year. I don't know how each of the staff members from the Hematology/Oncology and Radiation Oncology offices do their jobs each day but I am grateful for each and every one of them! They were there to raise money and support the many people they see in their offices. I've always said that each one of them has treated me like I am their sister, relative or part of their family and I am FOREVER grateful for them and their wonderful compassion towards their patients and families!!! They make it a lot easier for me to keep believing!
I will keep everyone updated as we start planning for the Relay for Life 2013.
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On another note, I just wanted to send out an update that while I was at the Relay, I physically just was not able to walk due to my recent leg/hip surgery to insert the rod in my femur. Poor Kurt had the fun of pushing me most everywhere in a wheelchair. Each day seems to be getting better and better with my healing. Today I decided I would try to "walk" without crutches ... I took several steps but definitely know that I need some assistance. It's been 12 days since my surgery and I realize it is going to take some time for walking normal but it felt good to not walk "with" crutches.
Friday, June 15, 2012
Relaxing, Healing & Hoping to Be Back to "Normal" Soon - 6/15/2012
Well, it's been 9 days since I had the surgery at Mayo. I was discharged on Friday, we stayed until Saturday. We left Rochester expecting to stay 1/2 way somewhere but as we got closer and closer to home, there was less and less places to stay. By this point, I just wanted to come home. We did get out a couple of times to walk around.
Every day seems like my leg movement is alittle better although I am still using crutches so pretty much not being able to do much of anything. I am able to be full weightbearing but I'm not actually really sure how long I should be using the crutches for. My leg is alittle sore - it's really bruised up! Apparently blood loss is not uncommon with this type of surgery so my hemoglobin was a bit low at my oncology appointment this past Monday. We are holding off with chemo pills for a couple of weeks. I will have my stitches out in @2 weeks.
Kurt and Ashley have been extremely helpful with everything. It stinks to not be able to much of anything for yourself - I am ready to be mobile again! But, I thank them for their continued help with everything!
My family and I planned to take part in the Relay for Life this weekend at Al Quaal in Ishpeming on Saturday-Sunday. We will be there, although I will not be able to walk. If you are there, please stop and see us! (I will try to take some pictures...)
I continue to believe...
Every day seems like my leg movement is alittle better although I am still using crutches so pretty much not being able to do much of anything. I am able to be full weightbearing but I'm not actually really sure how long I should be using the crutches for. My leg is alittle sore - it's really bruised up! Apparently blood loss is not uncommon with this type of surgery so my hemoglobin was a bit low at my oncology appointment this past Monday. We are holding off with chemo pills for a couple of weeks. I will have my stitches out in @2 weeks.
Kurt and Ashley have been extremely helpful with everything. It stinks to not be able to much of anything for yourself - I am ready to be mobile again! But, I thank them for their continued help with everything!
My family and I planned to take part in the Relay for Life this weekend at Al Quaal in Ishpeming on Saturday-Sunday. We will be there, although I will not be able to walk. If you are there, please stop and see us! (I will try to take some pictures...)
I continue to believe...
Tuesday, June 5, 2012
Decisions/Decisions and FINALLY Some Answers - 6/5/2012
I've been wanting to blog today but either there was someone on the computers or I was at appointments. I'm finally getting to it and hope that my tiredness does not make it sound silly.
I'd mentioned the following in my previous blog and thought I would just copy/paste it again:
I also mentioned to my oncologist that I am having some spurratic problems with
hip pain when I get up from sitting on hard surfaces, such as a wooden chair,
etc. It feels like my hip is out of joint. She sent me for an x-ray and to see
an orthopedic doctor (whom I'd already seen a couple of years ago for hip
pain). I saw the orthopedic doctor on Tuesday and from my x-ray, he indicated
that there is something "wrong" with my lesser trochanter. When I was
originally diagnosed last year, they told me that I had a stress fracture on
that hip; then my PET scan came back and I was sent for an MRI which confirmed
cancer in that area. I've had radiation and further PET scans show that the
area is healing. This new finding and because of my history (and the local
orthopedic doctor), I am going to be sent to see an orthopedic oncologist who
specializes in this area. Of course, there is not anyone locally that can do
this so we are trying to get word from the orthopedic doctor and my oncologist
on who they'd suggest I see - it looks like we will make another trip to either
Detroit or Mayo Clinic. (Still working on details of all of this....more will
be posted once I know what is going on. If anyone knows of a really
good orthopedic oncologist in either of these areas, please let us know!)
I received a call at @ 2:30 p.m. on Friday last week that the doctor here at Mayo would like to see me and could we come for appointments on this Monday and Tuesday. It was such a quick decision to have to make. We are very fortunate to have such great family support that it worked out to come since the kids have three days of school left to finish out the 2011-12 school year.
Kurt and I left on Sunday for our trip - missing our niece, Alyssa's 8th birthday. She was having a joint birthday party with our other niece, Alivia's, to celebrate her 3rd birthday party alittle early!
On Monday, I had bloodwork and an x-ray. They had called to tell me that we could come early for these tests and they got us in RIGHT away. We then went shopping a little bit waiting to get a call from the nurse that the doctor was out of surgery and we could come meet with him. We met with both the nurse and the orthopedic oncologist in the afternoon on Monday. He reviewed the x-ray images with us. He asked me questions on my pain level, if I could walk, etc. He told us that he was shocked that I wasn't using crutches or a wheelchair based on what my x-rays showed. Basically, the cancer tumor has damaged the lesser trochanter which is part of the femur (your long leg bone that goes from your hip to your knee). (The tumor itself is decreased in size as well.) He said that because of my lack of pain, I had a couple of different options but had I been in the pain that he had expected to see, I would have been told I was having surgery this Wednesday to put a rod down my femur bone. So, the options were:
1 - Have surgery; Surgery could be as soon as this Wednesday (6/6/12).
PROS: That it would be done
CONS: That I would have to have surgery and there is always risks
2 - Wait It Out
PROS: Give us time to think about it and get things in order
CONS: Worried that I would do something that would break my hip and then that would mean a total hip replacement and much more extensive surgery/recovery time. This would also mean that if I had ANY pain in my hip area, I would have to call to get in ASAP. And, if I broke my hip, a 7+ hour drive/ambulance ride/flight with a broken hip to have surgery.
3 - Think About It - Basically we have the option to go home and think about it and schedule surgery for a time that works best in our schedule
We did leave without knowing if I was going to have surgery on Wednesday. After discussing with each other and our parents, I decided it was probably just best to get it over with. Since I just went back to work not too long ago, I also wanted to discuss all of this with my boss. And, I did also text message my oncologist to make sure she was okay with me having it and also if I would have a delay in the chemo drug as I am supposed to start that again next week. My oncologist texted me back to get the surgery done and worry about the chemo drugs later.
So, I called the doctor's office this morning to let them know that I would like to have the surgery. We then went to their clinic to meet with him and his team, have pre-op work (more blood work, meet with anesthesia, sign paperwork, etc). We will find out shortly what time I will go in - the nurse thought @ 5:30 a.m. but we've got to confirm this.
The surgery itself will consist of putting a rod from my hip to knee down my right leg. There will be screws placed by my hip as well as my knee. The doctor said the average hospital stay is usually about 3 1/2 days, he'd like me to go to the hotel for one day after discharge and then we can drive 1/2 way home the following day with the other 1/2 day the following day. So, if all goes as he hopes, we will be leaving on Sunday and home Monday. They figure it will take 1-2 months of healing to be feeling back to where I am now. (I did have a witty little thing I said to Kurt this morning about the rod and screws but I think I will leave that up to the imagination - I don't want to offend!)
I am glad that we found out what has been going on and that I didn't ever break my hip! I'm also very thankful for the recommendation of the doctor that was given to me by a relative's brother who works at Mayo. I feel VERY comfortable with this doctor and his colleagues! As I heard from so many people about Mayo, everyone has been wonderful to us - it's a busy place but they definitely know what they are doing and how not to stress you out!
Thank you to Ray and Kay for keeping the kids and taking care of the animals (Zoey, the dog, and Speedy, the turtle) this week; my mom and dad for watching them as well. And, to my grandma, aunt, my neighbors and everyone else who called and offered to help! (As that saying goes, "It takes a village...") As of right now, the plan is that my parents and the kids will leave on Thursday morning to come and see us for a few days. They were excited for their last day of school (Wednesday) and it doesn't seem necessary for them to come to wait out a surgery and a day of healing. We will keep them updated on what is happening ... It doesn't make it easy though!
I will be sure to have Kurt update the blog and facebook... Thank you for your thoughts, prayers, etc. We believe!
Hopefully I will feel up to blogging in the next few days but I will be sure to have Kurt update the blog and my facebook page!
I'd mentioned the following in my previous blog and thought I would just copy/paste it again:
I also mentioned to my oncologist that I am having some spurratic problems with
hip pain when I get up from sitting on hard surfaces, such as a wooden chair,
etc. It feels like my hip is out of joint. She sent me for an x-ray and to see
an orthopedic doctor (whom I'd already seen a couple of years ago for hip
pain). I saw the orthopedic doctor on Tuesday and from my x-ray, he indicated
that there is something "wrong" with my lesser trochanter. When I was
originally diagnosed last year, they told me that I had a stress fracture on
that hip; then my PET scan came back and I was sent for an MRI which confirmed
cancer in that area. I've had radiation and further PET scans show that the
area is healing. This new finding and because of my history (and the local
orthopedic doctor), I am going to be sent to see an orthopedic oncologist who
specializes in this area. Of course, there is not anyone locally that can do
this so we are trying to get word from the orthopedic doctor and my oncologist
on who they'd suggest I see - it looks like we will make another trip to either
Detroit or Mayo Clinic. (Still working on details of all of this....more will
be posted once I know what is going on. If anyone knows of a really
good orthopedic oncologist in either of these areas, please let us know!)
I received a call at @ 2:30 p.m. on Friday last week that the doctor here at Mayo would like to see me and could we come for appointments on this Monday and Tuesday. It was such a quick decision to have to make. We are very fortunate to have such great family support that it worked out to come since the kids have three days of school left to finish out the 2011-12 school year.
Kurt and I left on Sunday for our trip - missing our niece, Alyssa's 8th birthday. She was having a joint birthday party with our other niece, Alivia's, to celebrate her 3rd birthday party alittle early!
On Monday, I had bloodwork and an x-ray. They had called to tell me that we could come early for these tests and they got us in RIGHT away. We then went shopping a little bit waiting to get a call from the nurse that the doctor was out of surgery and we could come meet with him. We met with both the nurse and the orthopedic oncologist in the afternoon on Monday. He reviewed the x-ray images with us. He asked me questions on my pain level, if I could walk, etc. He told us that he was shocked that I wasn't using crutches or a wheelchair based on what my x-rays showed. Basically, the cancer tumor has damaged the lesser trochanter which is part of the femur (your long leg bone that goes from your hip to your knee). (The tumor itself is decreased in size as well.) He said that because of my lack of pain, I had a couple of different options but had I been in the pain that he had expected to see, I would have been told I was having surgery this Wednesday to put a rod down my femur bone. So, the options were:
1 - Have surgery; Surgery could be as soon as this Wednesday (6/6/12).
PROS: That it would be done
CONS: That I would have to have surgery and there is always risks
2 - Wait It Out
PROS: Give us time to think about it and get things in order
CONS: Worried that I would do something that would break my hip and then that would mean a total hip replacement and much more extensive surgery/recovery time. This would also mean that if I had ANY pain in my hip area, I would have to call to get in ASAP. And, if I broke my hip, a 7+ hour drive/ambulance ride/flight with a broken hip to have surgery.
3 - Think About It - Basically we have the option to go home and think about it and schedule surgery for a time that works best in our schedule
We did leave without knowing if I was going to have surgery on Wednesday. After discussing with each other and our parents, I decided it was probably just best to get it over with. Since I just went back to work not too long ago, I also wanted to discuss all of this with my boss. And, I did also text message my oncologist to make sure she was okay with me having it and also if I would have a delay in the chemo drug as I am supposed to start that again next week. My oncologist texted me back to get the surgery done and worry about the chemo drugs later.
So, I called the doctor's office this morning to let them know that I would like to have the surgery. We then went to their clinic to meet with him and his team, have pre-op work (more blood work, meet with anesthesia, sign paperwork, etc). We will find out shortly what time I will go in - the nurse thought @ 5:30 a.m. but we've got to confirm this.
The surgery itself will consist of putting a rod from my hip to knee down my right leg. There will be screws placed by my hip as well as my knee. The doctor said the average hospital stay is usually about 3 1/2 days, he'd like me to go to the hotel for one day after discharge and then we can drive 1/2 way home the following day with the other 1/2 day the following day. So, if all goes as he hopes, we will be leaving on Sunday and home Monday. They figure it will take 1-2 months of healing to be feeling back to where I am now. (I did have a witty little thing I said to Kurt this morning about the rod and screws but I think I will leave that up to the imagination - I don't want to offend!)
I am glad that we found out what has been going on and that I didn't ever break my hip! I'm also very thankful for the recommendation of the doctor that was given to me by a relative's brother who works at Mayo. I feel VERY comfortable with this doctor and his colleagues! As I heard from so many people about Mayo, everyone has been wonderful to us - it's a busy place but they definitely know what they are doing and how not to stress you out!
Thank you to Ray and Kay for keeping the kids and taking care of the animals (Zoey, the dog, and Speedy, the turtle) this week; my mom and dad for watching them as well. And, to my grandma, aunt, my neighbors and everyone else who called and offered to help! (As that saying goes, "It takes a village...") As of right now, the plan is that my parents and the kids will leave on Thursday morning to come and see us for a few days. They were excited for their last day of school (Wednesday) and it doesn't seem necessary for them to come to wait out a surgery and a day of healing. We will keep them updated on what is happening ... It doesn't make it easy though!
I will be sure to have Kurt update the blog and facebook... Thank you for your thoughts, prayers, etc. We believe!
Hopefully I will feel up to blogging in the next few days but I will be sure to have Kurt update the blog and my facebook page!
Thursday, May 17, 2012
A Year In Review... MANY Lessons Learned - 5/17/2012
I thought I would try to blog tonight as I haven't blogged in awhile again ... but this time, I must say there is a lot going on (most of which doesn't have to do with cancer)!
First, part of the reason for my lack of blogging is that I went back to work and I just don't feel like I have enough time when I get home and I am a little tired by then anyway. I went back to work full-time; I started with a trip to Detroit (Kurt joined me) the week of April 30th. I had two classes to finish my human resource specialist certification through Michigan School Business Officials so I went to Detroit to take those classes and got my certification! Considering all that has happened in this past year, I was very excited to finish the certification process up and know that I did it! There was a few trips last year that I went on where I wasn't feeling well (probably know the reasons now) and then there was the fact that I didn't know if I would be here to finish up. I'm grateful my employer allowed me to finish! I've been back in the office the last two weeks (well, almost two weeks now) and it is so nice to be back, getting reacquainted with my job again, feeling some bit of normal and enjoying being around my amazingly awesome co-workers! This week was a true "test" for me as it is a chemo week... while I am tired, I think it has gone relatively well.
As I said, I have lots of little things to talk about too:
I also mentioned to my oncologist that I am having some spurratic problems with hip pain when I get up from sitting on hard surfaces, such as a wooden chair, etc. It feels like my hip is out of joint. She sent me for an x-ray and to see an orthopedic doctor (whom I'd already seen a couple of years ago for hip pain). I saw the orthopedic doctor on Tuesday and from my x-ray, he indicated that there is something "wrong" with my lesser trochanter. When I was originally diagnosed last year, they told me that I had a stress fracture on that hip; then my PET scan came back and I was sent for an MRI which confirmed cancer in that area. I've had radiation and further PET scans show that the area is healing. This new finding and because of my history (and the local orthopedic doctor), I am going to be sent to see an orthopedic oncologist who specializes in this area. Of course, there is not anyone locally that can do this so we are trying to get word from the orthopedic doctor and my oncologist on who they'd suggest I see - it looks like we will make another trip to either Detroit or Mayo Clinic. (Still working on details of all of this....more will be posted once I know what is going on. If anyone knows of a really good orthopedic oncologist in either of these areas, please let us know!)
It's hard to believe that a year has gone by, yet I feel like we have been through hell and back in many ways! My family has had a tremendous amount of stressors during this last year (my brother getting divorced and my being diagnosed with cancer to name just a few). I can honestly say that I have learned MANY lessons about life... try not to stress about the small stuff (because that is just what it is), be thankful for the blessings in your life (family, friends, love, faith, believing) and don't take things for granted because in a moment, things can change!
I'm VERY greatful for all of the wonderful people in my life! I've had so many people thinking and praying for not only me but my husband, kids, parents, inlaws, etc. I'm greatful that I have gotten to make wonderful memories with my children - such as our trip to Florida, etc. I've gotten to spend alot of time with my husband while we were home together and the kids were in school. I've been able to spend more time with my brother and his kids - it's wonderful to have a close relationship again with my brother and to be a bigger part of my nieces and nephew's lives! Of course, it goes without saying - I am most GREATFUL for my wonderful family and friends! I know I can't always be the easiest person to be around but I am forever thankful for you sticking by me and keeping my spirits up. Without you, I don't know how I would have made it through this past year! Most importantly - I continue to believe!
(And Kurt :), while I know that it isn't always easy, thank you for being a wonderful nurse/caregiver, channel-changer, chaffeur, constant worrier, head rubbing/kisser, protector and most of all... the love of my life!)
First, part of the reason for my lack of blogging is that I went back to work and I just don't feel like I have enough time when I get home and I am a little tired by then anyway. I went back to work full-time; I started with a trip to Detroit (Kurt joined me) the week of April 30th. I had two classes to finish my human resource specialist certification through Michigan School Business Officials so I went to Detroit to take those classes and got my certification! Considering all that has happened in this past year, I was very excited to finish the certification process up and know that I did it! There was a few trips last year that I went on where I wasn't feeling well (probably know the reasons now) and then there was the fact that I didn't know if I would be here to finish up. I'm grateful my employer allowed me to finish! I've been back in the office the last two weeks (well, almost two weeks now) and it is so nice to be back, getting reacquainted with my job again, feeling some bit of normal and enjoying being around my amazingly awesome co-workers! This week was a true "test" for me as it is a chemo week... while I am tired, I think it has gone relatively well.
As I said, I have lots of little things to talk about too:
- Kurt and I were able to enjoy some Tiger games while we were in Detroit for my classes. One rain out, one win and one loss! So, we have some tickets to a game in September since it was rained out!
- On May 10th, it was one year to the date that I was diagnosed with my brain tumors; the next few days were full of tests, tests and more tests. (Oh, and for those who came to visit in the hospital, of course, talking about my stinky pit.)
- On May 12th, my family, my mom, my nieces and nephew, my Auntie Kris, Kurt's (and mine too) Auntie Lois and cousin Shanon walked in the Hope Starts Here Brain Tumor Challenge at the Lower Harbor. As we were walking, I realized that one year earlier to the date, I was having my first craniotomy. Now this challenge is put on in part by the neurosurgeon who did my craniotomies. Because of his expertise and precision during my craniotomies, I am able to function, speak, etc. I am very lucky - and it is in large part due to him!
- Having to wear scarves as I am back to work is one of my least favorite things lately; I've been wearing my hats once and awhile too!
- My next PET scan will take place in June; my next MRI will take place in July!
I also mentioned to my oncologist that I am having some spurratic problems with hip pain when I get up from sitting on hard surfaces, such as a wooden chair, etc. It feels like my hip is out of joint. She sent me for an x-ray and to see an orthopedic doctor (whom I'd already seen a couple of years ago for hip pain). I saw the orthopedic doctor on Tuesday and from my x-ray, he indicated that there is something "wrong" with my lesser trochanter. When I was originally diagnosed last year, they told me that I had a stress fracture on that hip; then my PET scan came back and I was sent for an MRI which confirmed cancer in that area. I've had radiation and further PET scans show that the area is healing. This new finding and because of my history (and the local orthopedic doctor), I am going to be sent to see an orthopedic oncologist who specializes in this area. Of course, there is not anyone locally that can do this so we are trying to get word from the orthopedic doctor and my oncologist on who they'd suggest I see - it looks like we will make another trip to either Detroit or Mayo Clinic. (Still working on details of all of this....more will be posted once I know what is going on. If anyone knows of a really good orthopedic oncologist in either of these areas, please let us know!)
It's hard to believe that a year has gone by, yet I feel like we have been through hell and back in many ways! My family has had a tremendous amount of stressors during this last year (my brother getting divorced and my being diagnosed with cancer to name just a few). I can honestly say that I have learned MANY lessons about life... try not to stress about the small stuff (because that is just what it is), be thankful for the blessings in your life (family, friends, love, faith, believing) and don't take things for granted because in a moment, things can change!
I'm VERY greatful for all of the wonderful people in my life! I've had so many people thinking and praying for not only me but my husband, kids, parents, inlaws, etc. I'm greatful that I have gotten to make wonderful memories with my children - such as our trip to Florida, etc. I've gotten to spend alot of time with my husband while we were home together and the kids were in school. I've been able to spend more time with my brother and his kids - it's wonderful to have a close relationship again with my brother and to be a bigger part of my nieces and nephew's lives! Of course, it goes without saying - I am most GREATFUL for my wonderful family and friends! I know I can't always be the easiest person to be around but I am forever thankful for you sticking by me and keeping my spirits up. Without you, I don't know how I would have made it through this past year! Most importantly - I continue to believe!
(And Kurt :), while I know that it isn't always easy, thank you for being a wonderful nurse/caregiver, channel-changer, chaffeur, constant worrier, head rubbing/kisser, protector and most of all... the love of my life!)
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