I can't believe it's been 10 days since I've last blogged - a lot has been going on. I have been back to work on a limited basis - trying to work more and more; last week I did not work for three days but this week I am planning to work more.
To update on my hip/femur & brain surgery: I truly wouldn't even realize that I had brain surgery. I have been feeling good... maybe a little more tired - but doing good. I received a call from my neurosurgeon's office last week asking if I would willing to be interviewed regarding my surgery. I believe that the nurse said a local agency (can't remember if it was the paper or the news) as well as a company out of Indianapolis did interviews with all of the doctors that were part of my surgery and they would like to interview me. He said he would contact them and then they could contact me directly.
The neurosurgeon's nurse also gave me gave me the names of the people involved in my surgery - one of which was the neurosurgeon from Canada who came up with and trained my neurosurgeon on this new surgery. I was able to google his name and learn a lot about him - the fact that he wanted to be a neurosurgeon at a young age due to his mother having a tumor and what he has accomplished at such a young age is amazing! It also spoke of his dad teaching him to work on mechanics with his left hand so he was able to perform surgeries with that hand.
They also provided us with an edited version of my surgery on a flash drive. Ashley and I watched it - pretty cool to see, although I do have to say that it was a little weird thinking "that's my brain"! They have come up with another amazing way to get tumors out and I am glad to be a part of the process. (If there is anyone who is interested in viewing the video, I am willing to share with you; just let me know!)
This led me to thinking about when I first found out about having Stage IV melanoma ... I said there had to be a reason and that I hoped that in some way (some day) I could help someone else. I hope that these blogs, surgeries, radiation, meds, etc and how I react to them help with teaching and learning. I have some ideas of ways I want to get more word out about skin cancer, melanoma and cancer in general... it's just how to do this. I am not sure how to start the process but wonder if I need to get more vocal with legislation/government officials regarding melanoma; I am in the beginning stages of planning ways to raise funds for melanoma research (and already received my first 'anonymous' donation); I want to be an advocate to people who are going through similar situations. If anyone has any suggestions/ideas, please feel free to email me directly at ballz49866@gmail.com
Speaking of similar situations... Kurt and I met a couple while waiting to have my last MRI and the husband has been through a VERY similar situation as I have. We didn't get their names or information but were able to ask the neurosurgeon's office to try to connect us. We'd left each other a couple of messages but I finally connected via phone last weekend. We both had the option of this brain surgery vs. radiation - I opted for the surgery and he opted for radiation. He is already done with radiation and is waiting for the next step in the process. I told him about my surgery, that I will be having radiation in the next couple of weeks and then will be seeing my oncologist for the next step. I found out during our conversation that he also had some issues with a joint - he had a knee replacement - which I find interesting since I was complaining of hip pain for a few years prior to finding out about having metastatic melanoma. Both of our areas were confirmed as areas with melanoma tumors. It makes me want to get word out to people who have been diagnosed with skin cancer (melanoma) to make sure that they advocate for themselves and get further testing. (That's the part of this process where I want to get more information out to legislation, possibly doctors, etc.) As I do more on this, I will update on my blog!
Finally, today I had a PET scan. I won't get results (I don't think) until I see my oncologist on Sept 18th. In the meantime, I will be seeing the radiation oncologist on Sept 4th to get my mask made and then either later that week or the following week, I will have my one-day radiation. I will also see my neurosurgeon on Sept 10th.
Next, some of the fun things that have happened... Kurt and I went to the Tundra in Green Bay overnight last week with my parents, my brother and his three kids and our kids. They got to swim, go tubing, etc. The next day we all went school clothes shopping in Appleton. Kurt, the kids and I then met up with my cousin, Laurie, and her family (Bob, Kayla and Addy) to continue on to Gurnee/Waukegan, IL (just happens to be an area that my dad lived for quite awhile when he was younger). Laurie and I grew up with vacations to Six Flags Great America and they had planned on going so I asked if we could go with them. Last Friday we spent the 90+ degree day there. Since it was a lot of walking, I did end up renting a motorized wheelchair to get around after walking for quite awhile. It was A LOT of fun and I hope we can go back next summer! On the way home we did a little more shopping!
I have been weaning off some of my meds and starting to sleep better at night which is good. I also don't feel as hungry all the time. It's a good thing because I have been gaining weight, retaining water and been 'puffy'. I went shopping yesterday for some new (and bigger) work clothes as nothing fits anymore. I also am wondering if I am having some allergies to the baby shampoo I've been using - my head is really itchy so I quit using that kind. Today I woke up and my eyelids were swollen - my eyes have been watering so if this continues I will probably have to make an appointment to see my doctor.
Other than that, we are just gearing up for the kids to start school again next week (Nathan starts 7th and Ashley starts 4th grade) and getting back to some sort of routine/schedule!
visitors to this page
Tuesday, August 28, 2012
Saturday, August 18, 2012
Update 10 Days Post-Op - 8/18/2012
It's hard to believe that it's been 10 days already since my last surgery. While I have been tired and not sleeping on the right schedule (I think due to the increase in meds after surgery), I truly feel like nothing is different after the brain surgery. It's amazing that they performed brain surgery, removed my skull and the tumor and I don't feel like anything is really different. Kurt told me they said that they removed the tumor in 3 minutes and that they got 100% of it; I will still have radiation on that area as well as another potential tumor. I have pictures of my CRAZY hair - I have a reverse mohawk - the tumor was removed from the back of my head so they shaved my head in the back (my free MGH haircut); I also have shaved areas off my head where the 'live savers' were put on. And, the crazy part of all of this... there are NO staples or stitches! JUST GLUE!
Yesterday (Friday, August 19), we met with my radiation oncologist. Due to the area of where the incision is and that there are no staples/sutures, he would like to wait a couple of weeks to start the planning and do the radiation. He said he would like the area to heal a bit so that it has less chance of problems due to being on the radiation table and where it is located, etc. So, I will be going in on Tuesday, September 4th to have my next mask made (ugh - I don't look forward to it but know that it will be a brief time and I will be okay). They will then schedule me for later that week or the following week to have one-time radiation on the areas that they map out between the time the mask is made and radiation. Basically, I will go in, they will connect me again to the mask and table and radiation will be done to the area(s) once. I've already warned them that I will be sedating myself as I am claustrophobic and am already anxious about having the mask on and being constricted. But, I also am grateful that I do not have to have the halo put on so I know it will be all be okay.
Yesterday, I was also finally able to connect with the doctor's office at Mayo regarding the hip issue. They were able to view my xrays from both the day of surgery as well as the ones that were taken a few days prior to that. They indicated that while it is not common to happen, some times when you do these surgeries there is calcification that builds up and there is a medical term for it. Some people have issues with it - me being one of them - but most don't. Some complain of pain; others have no pain. I've been doing okay now... my hip/femur area is a bit tender/sore but it doesn't hurt like it did that day. Again, it is now just a matter of letting it heal and not stressing it out too much. (So, basically, I went back to where I started from right after the femur surgery.) I feel like I have been going one step forward and two steps back but I was very relieved to hear that I didn't break my hip and that the Mayo doctor seemed to think everything looked great in regards to the rod/femur surgery.
Tomorrow (Sunday, August 19th), I am going to see if Kurt and/or Ashley will shave/cut my hair to even it out some.... but not take my hair off totally. It's just starting to grow back - funny how many people talk about how curly it is (and a little gray). :)
Here are pictures that I thought I would share:
Yesterday (Friday, August 19), we met with my radiation oncologist. Due to the area of where the incision is and that there are no staples/sutures, he would like to wait a couple of weeks to start the planning and do the radiation. He said he would like the area to heal a bit so that it has less chance of problems due to being on the radiation table and where it is located, etc. So, I will be going in on Tuesday, September 4th to have my next mask made (ugh - I don't look forward to it but know that it will be a brief time and I will be okay). They will then schedule me for later that week or the following week to have one-time radiation on the areas that they map out between the time the mask is made and radiation. Basically, I will go in, they will connect me again to the mask and table and radiation will be done to the area(s) once. I've already warned them that I will be sedating myself as I am claustrophobic and am already anxious about having the mask on and being constricted. But, I also am grateful that I do not have to have the halo put on so I know it will be all be okay.
Yesterday, I was also finally able to connect with the doctor's office at Mayo regarding the hip issue. They were able to view my xrays from both the day of surgery as well as the ones that were taken a few days prior to that. They indicated that while it is not common to happen, some times when you do these surgeries there is calcification that builds up and there is a medical term for it. Some people have issues with it - me being one of them - but most don't. Some complain of pain; others have no pain. I've been doing okay now... my hip/femur area is a bit tender/sore but it doesn't hurt like it did that day. Again, it is now just a matter of letting it heal and not stressing it out too much. (So, basically, I went back to where I started from right after the femur surgery.) I feel like I have been going one step forward and two steps back but I was very relieved to hear that I didn't break my hip and that the Mayo doctor seemed to think everything looked great in regards to the rod/femur surgery.
Tomorrow (Sunday, August 19th), I am going to see if Kurt and/or Ashley will shave/cut my hair to even it out some.... but not take my hair off totally. It's just starting to grow back - funny how many people talk about how curly it is (and a little gray). :)
Here are pictures that I thought I would share:
 |
| This is the back of my head ('the reverse mohawk'); the incision/glue is the part on the right and the left I believe is just where they wrote with marker. |
 |
| This picture shows a little more of the CRAZY hair all over... and the hole in my forehead where I believe they put the GPS system. |
 |
| Thought I would share a few of the pictures that I took of my left arm and the bruising that I have; this was taken 9 days post-op and looks a lot worse in person but doesn't hurt. (This is the outside view of my left arm/elbow!) |
.jpg) |
| (This is the inside view of my left arm/elbow!) |
 |
| Kurt had this picture on his phone - shows what I looked like when I was either in ICU on Wednesday or 8th Floor on Thursday?!?! |
Friday, August 10, 2012
Home & Resting - 8/10/2012
I got home today at @11:30ish. I believe I was held a day longer in ICU and 8th floor due to the issue I had with my hip on surgery day but I was able to get a good night sleep last night so that was good. For those who may not have heard, the day before I had surgery I had to have an MRI and they gave me a different med than usual and when I went in the car, I put the seat back alittle bit and slept while Kurt and Ashley did some errands. When I got home, I left the seat back and came in the house and went to sleep. Well, when I went in the car the morning of surgery, I got in, sat up a bit to move the back of the chair up and felt a 'crack' in my right hip and then EXTREME pain. Kurt was putting out the garbage and when he got in the car, I told him I thought I broke my hip. Well, we ended up going to the hospital but letting the nurses know right away what was going on. Those that know me (which seems like quite a few of the nurses and other staff), knew that I don't normally complain of my pain and I was in some pretty good pain. When I went downstairs into the IV area, they did a couple of x-rays and the orthopedic doctor reviewed them. It appears that I pulled the muscle from my femur and I will just have to take it easy and let it heal on its own. I asked if they could forward the xrays to the doctor that performed my surgery at Mayo Clinic so I will plan to contact him for his opinion.
The surgery appeared to go very well. From what I understand, in the three weeks the tumor went from the size of a pea to the size of a cherry; there was also another small tumor that was not there previously. There were 4 doctors involved in the surgery... my neurosurgeon from Marquette performed the surgery; two doctors from Canada were there (and apparently as I was coming to, the one that my neurosurgeon trained under came in and asked me if I thought he was ugly - which I don't recall how he really looked but I don't believe he was ugly; the other two I don't really recall but I believe one was another that is trained and from California. They were able to get 100% of the tumor - Kurt said removal of the actual tumor took them all of 3 minutes.
I had a CAT scan the night of surgery (wasn't too pleasant moving due to hip issues so I took pain meds when I returned to my room). I had an MRI the following morning and moved to the 8th floor later that evening. I think I could have went home that day had I not had the issues with my hip. Today I was discharged by 11 a.m. having no real issues.
I will be meeting with the radiation oncologist next Friday afternoon to plan my one-time treatment. They will be doing radiation on the area of the surgery site of tumor as well as another tumor that is now showing. After that, I will then see the neurosurgeon again as well as the oncologist to figure out my next round of meds. (I have to wonder if that is why my tumors have grown a bit since I haven't been on any treatment since May?!?!)
I am a little tired but otherwise feeling good. I was told today that I should be off work ... we will see when I can return. I am almost certain that the hip issue has put a different twist on the timeframe they originally gave me. Plus, having had surgery, they increased my meds; I am decreasing daily but it will still take a couple of weeks to get back to where I was before surgery - and these meds can make you alittle off.
I will update as I know more of what is going on in the next few weeks... Thank you for your thoughts, prayers and believing!
The surgery appeared to go very well. From what I understand, in the three weeks the tumor went from the size of a pea to the size of a cherry; there was also another small tumor that was not there previously. There were 4 doctors involved in the surgery... my neurosurgeon from Marquette performed the surgery; two doctors from Canada were there (and apparently as I was coming to, the one that my neurosurgeon trained under came in and asked me if I thought he was ugly - which I don't recall how he really looked but I don't believe he was ugly; the other two I don't really recall but I believe one was another that is trained and from California. They were able to get 100% of the tumor - Kurt said removal of the actual tumor took them all of 3 minutes.
I had a CAT scan the night of surgery (wasn't too pleasant moving due to hip issues so I took pain meds when I returned to my room). I had an MRI the following morning and moved to the 8th floor later that evening. I think I could have went home that day had I not had the issues with my hip. Today I was discharged by 11 a.m. having no real issues.
I will be meeting with the radiation oncologist next Friday afternoon to plan my one-time treatment. They will be doing radiation on the area of the surgery site of tumor as well as another tumor that is now showing. After that, I will then see the neurosurgeon again as well as the oncologist to figure out my next round of meds. (I have to wonder if that is why my tumors have grown a bit since I haven't been on any treatment since May?!?!)
I am a little tired but otherwise feeling good. I was told today that I should be off work ... we will see when I can return. I am almost certain that the hip issue has put a different twist on the timeframe they originally gave me. Plus, having had surgery, they increased my meds; I am decreasing daily but it will still take a couple of weeks to get back to where I was before surgery - and these meds can make you alittle off.
I will update as I know more of what is going on in the next few weeks... Thank you for your thoughts, prayers and believing!
Tuesday, August 7, 2012
Life Savers? - 8/7/2012
Today Kurt and I met with the nurse, 2 PAs and neurosurgeon regarding my upcoming surgery tomorrow. One of the PAs went through medical history (and indicated she couldn't find anything wrong with me - which I quickly told her to talk to Kurt about that!); the other PA shaved hair off parts of my head and then put these small white circular 'foamy' sticky things on (they look like spearmint/peppermint life savers). In fact, they had figured that out prior to our arrival and brought in a head with a brain sticking out and had tape on that head where they figured to put the 'life savers' - sortof funny to see how much work really goes into planning all of this! I was told I would then go down for an MRI; the 'life savers' would show up in the MRI and then the doctors would use that to map out the surgery along with using the GPS tracking for the surgery. The 'life savers' should remain on until I am in surgery - it's kindof funny looking but as I thought about it today, I decided that it made sense to call them "LIFE SAVERS" as they not only look like that BUT they are part of a surgery that is potentially a 'life saver'.
After meeting with the staff from the neurosurgeon's office, I went for my MRI. I am VERY claustrophic and hadn't brought the meds that I normally take for the MRI so I had a prescription called in before we left the neurosurgeon's office. I had a different med than usual (but one that I have had in the past). After I left the MRI, I was very loopy from those meds. I came home and slept for several hours!
I've come to know most everyone that I see at all these offices and it amazed me today how enthusiastic everyone was about this surgery and the doctor(s) performing it! It gives me a little more peace of mind knowing that we all put our faith into this procedure and those doing it!!!!
So, tomorrow I will be at the hospital at 5:15 a.m. They indicated that I would probably go to the holding area around 6:30-8 a.m. to get my IV hooked up, into the surgery room at @ 8 a.m. and then they would set up all the equipment and everything (the lengthy part of the surgery it sounds like). Once surgery is done I will either go to recovery for awhile and then on to ICU or just directly to ICU. It sounds like if everything goes the way that they anticipate, I will have an MRI on Thursday in the morning and could possibly be discharged sometime that day. It is another craniotomy - although they do not anticipate it to be as long of an incision (@2 inches maybe) - so I will have the "Free MGH Haircut" as one of the PAs told me! :) I will have sutures/staples in the back of my head where the surgery will be performed.
I also want to say "I LOVE YOU" to my husband! On the day of my surgery, it is our 14th wedding anniversary; we spent our 13th anniversary at Karmanos in Detroit. I am SO lucky to have you in my life and you've taken the "in sickness and in health" to the extreme over the 15 months. I'm FOREVER grateful to you for all that you do for me, Nathan and Ashley ... it definitely cannot be easy! EU!
I've asked Kurt to take away my iPhone until he feels I am ready to blog or send emails, etc. (For those who may have seen some of the messages I sent when I was admitted to the hospital in January, I thought it better that Kurt blog or put status updates on facebook this time!) :)
Thank you to everyone for your thoughts, prayers, well wishes, etc. You make it A LOT easier to keep my spirits high and BELIEVE!
I hope to be home, resting and blogging in a few days! (I suppose I better get to bed since it is already 11:30 p.m. and I will have to get up @ 4 a.m.) :)
 |
| This is a picture of my head with a few of the 'life savers' on them. :) (Check out that crazy 'mop' - alittle more hair each day ... and not sure if it would change but I've been told it really looks gray in the area with little hair above my nose) |
I've come to know most everyone that I see at all these offices and it amazed me today how enthusiastic everyone was about this surgery and the doctor(s) performing it! It gives me a little more peace of mind knowing that we all put our faith into this procedure and those doing it!!!!
So, tomorrow I will be at the hospital at 5:15 a.m. They indicated that I would probably go to the holding area around 6:30-8 a.m. to get my IV hooked up, into the surgery room at @ 8 a.m. and then they would set up all the equipment and everything (the lengthy part of the surgery it sounds like). Once surgery is done I will either go to recovery for awhile and then on to ICU or just directly to ICU. It sounds like if everything goes the way that they anticipate, I will have an MRI on Thursday in the morning and could possibly be discharged sometime that day. It is another craniotomy - although they do not anticipate it to be as long of an incision (@2 inches maybe) - so I will have the "Free MGH Haircut" as one of the PAs told me! :) I will have sutures/staples in the back of my head where the surgery will be performed.
I also want to say "I LOVE YOU" to my husband! On the day of my surgery, it is our 14th wedding anniversary; we spent our 13th anniversary at Karmanos in Detroit. I am SO lucky to have you in my life and you've taken the "in sickness and in health" to the extreme over the 15 months. I'm FOREVER grateful to you for all that you do for me, Nathan and Ashley ... it definitely cannot be easy! EU!
I've asked Kurt to take away my iPhone until he feels I am ready to blog or send emails, etc. (For those who may have seen some of the messages I sent when I was admitted to the hospital in January, I thought it better that Kurt blog or put status updates on facebook this time!) :)
Thank you to everyone for your thoughts, prayers, well wishes, etc. You make it A LOT easier to keep my spirits high and BELIEVE!
I hope to be home, resting and blogging in a few days! (I suppose I better get to bed since it is already 11:30 p.m. and I will have to get up @ 4 a.m.) :)
Wednesday, August 1, 2012
Not Much NEW News - 08/01/2012
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....
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....
Subscribe to:
Posts (Atom)