The flight went very smoothly. Steve and Alyssa met me at the airport with a big sign. She was smiling ear to ear and so happy to see me! It was strange to come home after being gone so long. Steve was very busy while I was gone. He put up the Christmas tree, rearranged some furniture and did a lot of organizing. He prepared a fabulous Thanksgiving turkey feast for us, after which we spent a quiet day together as a family. I missed seeing my extended family, but knew that the car ride would be too much.
Since then, we have just been hanging out, playing board games, watching movies and sleeping!
Now I am supposed to take it easy for 3-4 weeks. He warned me I would be really tired - I've been sleeping 10-12 hours every night. I am supposed to get a scan in 6-8 weeks & then will follow up with my internist and neurosurgeon here. I will also need to do physical therapy - don't know how often yet. It will help me build up my muscles in my neck and spine. I am missing quite a bit of the bone on the back of my spine (both from this surgery and my previous one) & therefore, my muscles need to work even harder to hold up my head. I will do exercises at home also.
Amazingly, my nausea is almost gone! The doctor hypothesized that if he could remove the pressure that the cyst was creating that there was chance the nausea would improve & he was right! I AM SO HAPPY : )
As far as starting on the Sutent chemo drug for my kidneys, we first need to determine if the cataract surgery (which I am anxious to do) will cause this to be delayed. Originally, I was planning to start it in mid-January. Now we will have to wait and see... I really want to get as much of my eyesight back as possible, so want to address the cataract first.
Thank you all again so much for your love, support and prayers...
Sunday, November 29, 2009
Wednesday, November 25, 2009
Homeward bound...
After a very long day at MD Anderson yesterday, Kim has been cleared for take-off!
She got her stitches out, her hair washed and blood taken. She spent three hours at the eye doctor. He thinks that it may be a cataract that has caused her recent reduction in vision. This could be removed as an outpatient procedure back in Chicago. That would be fabulous if it could help her see better!
Kim's upper back is very sore today, probably from the long day at the hospital yesterday. She is not looking forward to the jostling that will occur while traveling, but is very excited to see her family! Steve and the kids will meet her at the airport baggage claim this evening : ) (Wish we could capture that on video!) They will share a nice, quiet Thanksgiving dinner at home tomorrow. While she will miss being with her extended family, Kim knows that she will be too sore and exhausted for a bumpy car ride.
Happy Thanksgiving to all! I'm sure we can all agree that Kim's successful surgery is one thing we are all thankful for this year...
She got her stitches out, her hair washed and blood taken. She spent three hours at the eye doctor. He thinks that it may be a cataract that has caused her recent reduction in vision. This could be removed as an outpatient procedure back in Chicago. That would be fabulous if it could help her see better!
Kim's upper back is very sore today, probably from the long day at the hospital yesterday. She is not looking forward to the jostling that will occur while traveling, but is very excited to see her family! Steve and the kids will meet her at the airport baggage claim this evening : ) (Wish we could capture that on video!) They will share a nice, quiet Thanksgiving dinner at home tomorrow. While she will miss being with her extended family, Kim knows that she will be too sore and exhausted for a bumpy car ride.
Happy Thanksgiving to all! I'm sure we can all agree that Kim's successful surgery is one thing we are all thankful for this year...
Saturday, November 21, 2009
Kim has been sprung!
Kim was released from MD Anderson yesterday afternoon and is now spending time with her family in Houston. The following update just came in from Kim and Aunt Jan...
No improvement on the eyesight and of course she has to deal with the pain from the surgery. Thursday Kim had an appt. with Dr. Gambos, an eye surgeon; after a 3 hr. appt. of pictures, ultra-sounds, angiogram and vision checked it showed enlargement of the optic nerve tumor, a moderate sized eye lesion; he feels her vision loss is coming from the macular area of which she had surgery in May. He's referring her to a local eye surgeon as he is more familiar with optic nerve tumors and wants her to get another opinion as whether she should proceed or not with treatment on the eye. Dr. Gambos feels that any sugery to the eye will worsen the vision rather than help with improvement. He recommends her to getting evaluated for another set of prescription glasses to see if that helps with the blurriness. He also feels alot of the blurriness is coming from the pain meds. she's on now.
Jeff left Thursday afternoon and Kim was so thrilled he was there and being so supportive and helpful to her. He helped with everything from feeding to repositioning to being her own personal physical therapist. Jeff is awaiting an appt. with interventional radiology to have a biopsy and possible laprascopic surgery to remove 2 large masses located behind his pancreas. Depending on what type of tumor it is, that will determine what type of chemo he will get. He was a very impressed with MD Anderson and now wants to continue all his treatments there.
She had an appt. with a dermotolgist for her easily bruised skin and he said it would be best to try 2 prescription lotions starting in one place on her arm to see if it works.
Basically, she got out of the hospital yesterday late afternoon. She is here til Tues. when we take her to see another eye dr. in the a.m. and get the sutures out at 1-1:30. On Tues. she will have labs drawn for a hemotology consult as precaution prior to starting the sutent chemo trial. Then she'll go get her hair washed one more time, and back here. Wed. she flies back to Chicago at 5:30pm and Steve will pick her up. Thanksgiving she'll stay home with her family as the drive to Debbie's is too long for her with bumps in the roads, etc. She'll miss seeing everyone but
realizes it would be too much for her.
The following photos were taken during the end of her stay at MD Anderson...
Kim with her brother, Jeff
Kim and Sheila
Kim getting a workout and enjoying some fresh air
Kim and Jeff with their Houston family
No improvement on the eyesight and of course she has to deal with the pain from the surgery. Thursday Kim had an appt. with Dr. Gambos, an eye surgeon; after a 3 hr. appt. of pictures, ultra-sounds, angiogram and vision checked it showed enlargement of the optic nerve tumor, a moderate sized eye lesion; he feels her vision loss is coming from the macular area of which she had surgery in May. He's referring her to a local eye surgeon as he is more familiar with optic nerve tumors and wants her to get another opinion as whether she should proceed or not with treatment on the eye. Dr. Gambos feels that any sugery to the eye will worsen the vision rather than help with improvement. He recommends her to getting evaluated for another set of prescription glasses to see if that helps with the blurriness. He also feels alot of the blurriness is coming from the pain meds. she's on now.
Jeff left Thursday afternoon and Kim was so thrilled he was there and being so supportive and helpful to her. He helped with everything from feeding to repositioning to being her own personal physical therapist. Jeff is awaiting an appt. with interventional radiology to have a biopsy and possible laprascopic surgery to remove 2 large masses located behind his pancreas. Depending on what type of tumor it is, that will determine what type of chemo he will get. He was a very impressed with MD Anderson and now wants to continue all his treatments there.
She had an appt. with a dermotolgist for her easily bruised skin and he said it would be best to try 2 prescription lotions starting in one place on her arm to see if it works.
Basically, she got out of the hospital yesterday late afternoon. She is here til Tues. when we take her to see another eye dr. in the a.m. and get the sutures out at 1-1:30. On Tues. she will have labs drawn for a hemotology consult as precaution prior to starting the sutent chemo trial. Then she'll go get her hair washed one more time, and back here. Wed. she flies back to Chicago at 5:30pm and Steve will pick her up. Thanksgiving she'll stay home with her family as the drive to Debbie's is too long for her with bumps in the roads, etc. She'll miss seeing everyone but
realizes it would be too much for her.
The following photos were taken during the end of her stay at MD Anderson...
Kim with her brother, Jeff
Kim and Sheila
Kim getting a workout and enjoying some fresh air
Kim and Jeff with their Houston family
Tuesday, November 17, 2009
A hospital with good food?!?!
From Suzanne: I just got off the phone with Kim. She is having a "sucky day," primarily because she was up and about for four hours earlier today & overdid it. She has a lot of back pain and is hoping to see the pain clinic people later today to get a better pain management plan in place. Overall, however, she sounds great & is in love with MD Anderson. There is constantly someone coming in to check on her and offer her something. She went to the beauty salon there yesterday & loved that. The food is great & it's like hotel room service. They do not bring it at a specific time, but rather you call and order from a menu whenever you are hungry & they deliver it prompty wearing tuxedos! How cool is that?!?! As I spoke to her, she was enjoying a milkshake and a Philly Cheesesteak sandwich.
Her sister, Robin, left today. Kim was so glad she came. It was nice to be together and she was able to give Steve some breaks while he was there. Kim's brother, Jeff, will be there until Thursday. Tomorrow, he will be meeting with Dr. Jonasch, the kidney doctor that Kim has been seeing there. They are hoping that he may also be a candidate for the chemo drug that Kim is supposed to start in approximately six weeks. They are trying to see if it is something they could do at the same time so that they would travel there together, share a hotel room, etc...
Kim will also be meeting with the kidney doctor before she leaves the hospital to talk about her plan. Additionally, she has an appointment with an eye doctor, who she hopes will have some options to offer her. A hematologist will also meet with Kim in order to understand her blood problem further.
Kim spends at least three hours a day doing OT, PT & rehab classes. She will have a walker when she first comes home because she is still unsteady on her feet. She is experiencing alot of numbness throughout her body, but they doctor believes it is from swelling and expects it to go away.
They are talking about releasing Kim from the hospital on Friday or Saturday. Then, she will go to her Aunt Jan's home for the weekend. She'll return to MD Anderson on Monday for suture removal, another MRI and therapy. The doctor wants to make sure everything looks good before she gets on a plane to come home.
All-in-all, Kim is very thankful for her decision to have the surgery in Houston with Dr. McCutcheon. She is still blown away by the fact that he was able to remove all four tumors and two cysts. At least that is one part of her body she can forget about for awhile! She asks that you all keep praying for a speedy recovery!
Her sister, Robin, left today. Kim was so glad she came. It was nice to be together and she was able to give Steve some breaks while he was there. Kim's brother, Jeff, will be there until Thursday. Tomorrow, he will be meeting with Dr. Jonasch, the kidney doctor that Kim has been seeing there. They are hoping that he may also be a candidate for the chemo drug that Kim is supposed to start in approximately six weeks. They are trying to see if it is something they could do at the same time so that they would travel there together, share a hotel room, etc...
Kim will also be meeting with the kidney doctor before she leaves the hospital to talk about her plan. Additionally, she has an appointment with an eye doctor, who she hopes will have some options to offer her. A hematologist will also meet with Kim in order to understand her blood problem further.
Kim spends at least three hours a day doing OT, PT & rehab classes. She will have a walker when she first comes home because she is still unsteady on her feet. She is experiencing alot of numbness throughout her body, but they doctor believes it is from swelling and expects it to go away.
They are talking about releasing Kim from the hospital on Friday or Saturday. Then, she will go to her Aunt Jan's home for the weekend. She'll return to MD Anderson on Monday for suture removal, another MRI and therapy. The doctor wants to make sure everything looks good before she gets on a plane to come home.
All-in-all, Kim is very thankful for her decision to have the surgery in Houston with Dr. McCutcheon. She is still blown away by the fact that he was able to remove all four tumors and two cysts. At least that is one part of her body she can forget about for awhile! She asks that you all keep praying for a speedy recovery!
Sunday, November 15, 2009
Steady progress...
Kim continues to do well! She has been talking, laughing and doing laps around the nurses station with her hot therapist.
Kim's scar... Ouch!
Steve heads home today to be with the kids and Kim's brother, Jeff, will arrive in Houston. Hopefully, Kim will be out of the hospital by the end of next week!
Kim's scar... Ouch!
Steve heads home today to be with the kids and Kim's brother, Jeff, will arrive in Houston. Hopefully, Kim will be out of the hospital by the end of next week!
Saturday, November 14, 2009
Awake and laughing, once again!
Steve says that Kim is back to her old self today! She is awake, talking and laughing... Apparently it was just the medication that had made her so "loopy". Great news!!!
Friday, November 13, 2009
Zzzzzzzzzzzzzzzzzz.....
Today, Kim seems to have taken a bit of a step backward. She has been rather lethargic and slept most of the day. Perhaps she overdid it yesterday or is simply trying to make up for the previous two days with little or no sleep. The good news is that the MRI last night, as well as the CT scan today, were both negative - this means no bleeding or swelling! Her vital signs are also good. They are hoping to see the neurosurgeon tonight before he leaves the hospital.
Hopefully Kim will have more energy tomorrow and they will be able to get her outside for some fresh air and sunshine. Keep her in your prayers...
Hopefully Kim will have more energy tomorrow and they will be able to get her outside for some fresh air and sunshine. Keep her in your prayers...
Out of ICU...
Accoring to Steve and Aunt Jan, Kim continues to do amazingly well. She had a 2.5 hour MRI last night & we will get those results today. They moved her out of ICU and into a regular room! Aunt Jan hopes to get her outside in a wheelchair today to enjoy the Texas sunshine. Anyone who knows Kim knows how much she loves the sun : )
If anyone wants to send cards, they are asking that you send them to Aunt Jan's house. That way, they will not get lost if she is discharged from the hospital sooner than expected.
Jan Busse
447 Chattanooga Pk
Conroe, TX 77302
If anyone wants to send cards, they are asking that you send them to Aunt Jan's house. That way, they will not get lost if she is discharged from the hospital sooner than expected.
Jan Busse
447 Chattanooga Pk
Conroe, TX 77302
Thursday, November 12, 2009
Recovery begins, part 2...
From Steve:
It's 11:30am. 11-12-09
Kim's first night was slightly rough because they did not want to give her too much medication to be able to access her better.
Robin and I got to the hospital about 10:00am. Kim is doing OUTSTANDING. Still some discomfort with neck pain, which is to be expected. Some nausea. Physical therapy came in and Kim walked down the hall with them. PT said she is doing so well, they thought she would be gone by the end of the weekend. We'll see about that.
Should be moving out of ICU today.
Recovery begins...
Just received this update from Kim's Aunt Jan, who just spoke with Robin:
- Kim says on a scale of 1-10 her pain is a strong 8
- Nausea is bad as it is normally for her and especially after surgery
- Physical therapist was there and had her sitting on edge of bed
- Will move her to chair
- Dr. hasn't been there yet
- Had a bad night; didn't sleep well and they don't give much pain med. after brain surgery so they can monitor
- She wants Robin to order her a bagel and orange tea so she is hungry
and wants to eat
- Robin will reinforce to Kim everyones' prayers and thoughts
- Kim says on a scale of 1-10 her pain is a strong 8
- Nausea is bad as it is normally for her and especially after surgery
- Physical therapist was there and had her sitting on edge of bed
- Will move her to chair
- Dr. hasn't been there yet
- Had a bad night; didn't sleep well and they don't give much pain med. after brain surgery so they can monitor
- She wants Robin to order her a bagel and orange tea so she is hungry
and wants to eat
- Robin will reinforce to Kim everyones' prayers and thoughts
Wednesday, November 11, 2009
Surgery was a success!!!
Just got off the phone with Steve. Kim's surgery ended around 5:30 p.m. and they have seen her in ICU. She is swollen & experiencing pain, but talking up a storm! (Hard to believe - LOL!) She is VERY excited about the success of the surgery. She can feel and move all of her extremities & the surgeon said it could not have gone better! He was able to remove all three tumors - 2 of them that were feeding two cysts - as well, as the third tumor in her cervical spine. He also shaved off some bone that was sticking out from a previous surgery. The doctor anticipates that she may be ready to leave the hospital in 6-7 days! It appears that all of our prayers were answered...
Surgery update...
Just talked to Steve. Basically he is getting very basic info from nurse. Vital signs good , at the tumor, working on it. He's hoping to get a little more info at 6:00 but we probably won't get any detailed info until the surgery is over and the surgeon talks to Steve. Will continue to post when there is any news...
Surgery update...
From Steve: OK, the latest update as of 12:00. They are at the spot of the cyst and tumors. They were using ultrasound to make sure before they cut through the late thin layer that they are in the right area.
This is by far the most vital part of the surgery. The next update will let us know whether they are able to get the tumors or if it is too dangerous to mess with. Pray for no bleeding. This is the toughest part of the whole day. We are very anxious.
Nest update at 2
This is by far the most vital part of the surgery. The next update will let us know whether they are able to get the tumors or if it is too dangerous to mess with. Pray for no bleeding. This is the toughest part of the whole day. We are very anxious.
Nest update at 2
Surgery update...
OR nurse said they started the case at 9:04 a.m. No real update on the procedure. Next update will be 12:00 noon.
Surgery update...
They took Kim into the OR around 7:30 a.m. According to Steve she was slightly nervous, but VERY confident. The first update from the nurse should come around 10:00 a.m.
Tuesday, November 10, 2009
Tomorrow is the big day...
From Suzanne: I spoke with Kim around 8 p.m. this evening. She had just finished a long day of being poked and prodded in preparation for her surgery tomorrow. Steve arrived in Houston today, as did her sister, Robin. They were having dinner at the Olive Garden before heading to the hotel for a quick night's sleep. Kim needs to be back at the hospital at 5:15 a.m. to get ready for surgery. The doctor plans to start the surgery promptly at 7:00 a.m. and believes it will last a minimum of 8-10 hours.
The surgeon first plans to remove three of Kim's four tumors, as well as draining the attached cyst. There is a fourth tumor (the largest one) that is deeper in her cervical spine and may be tricky to get to. The doctor really would like to remove it, as he feels it could be causing swelling in her spinal cord and contributing to her numbness. However, he will have to determine once he is in there whether he can remove it safely or if the risk is simply too great. As I said before, the surgery will probably be at least 8-10 hours and probably much longer if he addresses the fourth tumor. (A few days ago, the doctor completed his longest surgery ever - 20 hours - on another VHL patient.) Steve will update me when he is able & I will post her status on the blog as often as possible.
Keep praying and keep watching the blog for updates...
The surgeon first plans to remove three of Kim's four tumors, as well as draining the attached cyst. There is a fourth tumor (the largest one) that is deeper in her cervical spine and may be tricky to get to. The doctor really would like to remove it, as he feels it could be causing swelling in her spinal cord and contributing to her numbness. However, he will have to determine once he is in there whether he can remove it safely or if the risk is simply too great. As I said before, the surgery will probably be at least 8-10 hours and probably much longer if he addresses the fourth tumor. (A few days ago, the doctor completed his longest surgery ever - 20 hours - on another VHL patient.) Steve will update me when he is able & I will post her status on the blog as often as possible.
Keep praying and keep watching the blog for updates...
Saturday, November 7, 2009
I'm leaving on a jet plane...
It's been a very busy week getting ready for surgery. Today I went downtown for my pre-op MRI scans. I leave for Houston tomorrow morning. I'm still very confident in the surgeon, but the anxiety is starting to build as the surgery gets closer. To add to the stress, Steve lost his job this week*. However, looking at the bright side - my kids will now have at least one of us there for them the week following the surgery. I spoke with both of the kids about my surgery and me being out of town for so long. Tyler seems to be handling it well, yet he still continues to hold in a lot of his feelings. My little drama queen, on the other hand, has been very emotional this week & I'm somewhat worried about her getting through the next three weeks. I spoke with her teacher and we started e-mailing back & forth. This will be our way to keep in touch while I'm gone. We are trying to set up skype-ing as well.
And now, some good news! My brother and sister, after not being able to be with my brother when he passed away, were very determined to come out for my surgery. They both got tickets today. My sister Robin will fly out the night before my surgery and stay for a week. My brother, Jeff, will come on Sunday (the day Steve leaves) and stay until the following Thursday. My high school friend will also still come the 18th-21st. So don't worry, I will not be alone!
On a completely different note... apparently, there is bag containing funeral cards from the night of my brother's wake that is missing. It is a blue Ahlgrim's bag. If anyone has seen it, please let us know.
We will try to update the blog as often as possible to inform everyone about the surgery and my recovery. Just keep praying!!!
(* Steve has over 20 years of medical sales experience. If anyone has any leads or contacts, please let him know! e-mail: sgillespie62@att.net)
And now, some good news! My brother and sister, after not being able to be with my brother when he passed away, were very determined to come out for my surgery. They both got tickets today. My sister Robin will fly out the night before my surgery and stay for a week. My brother, Jeff, will come on Sunday (the day Steve leaves) and stay until the following Thursday. My high school friend will also still come the 18th-21st. So don't worry, I will not be alone!
On a completely different note... apparently, there is bag containing funeral cards from the night of my brother's wake that is missing. It is a blue Ahlgrim's bag. If anyone has seen it, please let us know.
We will try to update the blog as often as possible to inform everyone about the surgery and my recovery. Just keep praying!!!
(* Steve has over 20 years of medical sales experience. If anyone has any leads or contacts, please let him know! e-mail: sgillespie62@att.net)
Monday, November 2, 2009
Travel plans for Houston
Regarding my upcoming surgery at MD Anderson in Houston, some of the plans are as follows:
I fly out this Sunday morning (11/8). Steve will join me Tuesday morning through Sunday afternoon (11/10-15). My sister-in-law, Laura, will be traveling in from Detroit to stay with the kids. If you don't mind, I will be leaving some of your names and numbers for her to call, as she is very unfamiliar with this area and may need some help with driving kids or errands. She will be flying in Monday evening the 9th and staying through the 15th, when Steve returns. We are now covered for the first 8 days of my 15 day excursion! After that, some friends have offered to cover when Steve needs to travel the following week.
I plan to return home on Wednesday, November 25th for Thanksgiving, assuming all goes well! I have an aunt and uncle, plus several cousins, who live about an hour from the hospital in Houston and will be visiting me while I am there. My high school friend, Sheila, will be coming from Atlanta to visit me from Wednesday the 18th through Saturday the 21st.
Thank you for all of your well wishes. I will update the blog as often as possible following the surgery! So, this will be the place to get the most up-to-date info...
On another note... after speaking with several doctors, they feel it is possible that the pressure of the tumor on my brainstem is what is making my eyesight so bad lately & that once the pressure is relieved, at least some of my vision may be restored. Let's pray that is the case!
I fly out this Sunday morning (11/8). Steve will join me Tuesday morning through Sunday afternoon (11/10-15). My sister-in-law, Laura, will be traveling in from Detroit to stay with the kids. If you don't mind, I will be leaving some of your names and numbers for her to call, as she is very unfamiliar with this area and may need some help with driving kids or errands. She will be flying in Monday evening the 9th and staying through the 15th, when Steve returns. We are now covered for the first 8 days of my 15 day excursion! After that, some friends have offered to cover when Steve needs to travel the following week.
I plan to return home on Wednesday, November 25th for Thanksgiving, assuming all goes well! I have an aunt and uncle, plus several cousins, who live about an hour from the hospital in Houston and will be visiting me while I am there. My high school friend, Sheila, will be coming from Atlanta to visit me from Wednesday the 18th through Saturday the 21st.
Thank you for all of your well wishes. I will update the blog as often as possible following the surgery! So, this will be the place to get the most up-to-date info...
On another note... after speaking with several doctors, they feel it is possible that the pressure of the tumor on my brainstem is what is making my eyesight so bad lately & that once the pressure is relieved, at least some of my vision may be restored. Let's pray that is the case!
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