The Celebration of Life for Sareana will be held at:
Eliot Chapel
First Unitarian Portland
1011 SW 12th Ave
Portland, OR
Service at 2 pm, Friday, 12/15/17. Celebration to follow onsite until 5 pm.
Monday, December 11, 2017
Sunday, December 10, 2017
Friends-
We lost Sareana yesterday afternoon, December 9. She died peacefully at home.
We will have a Memorial Service and Celebration late this week here in Portland, most likely Friday or Thursday. We are working out the details and I will post as soon as we've solidified a plan.
We are also planning on a less formal Celebration of Life to take place next summer in Colorado. Details on that will be worked out in the coming months.
All are welcome to come to either of these events for Sareana.
Sareana spent time at Vanderbilt Hospital and felt strongly that the Hospital Hospitality House in Nashville was a wonderful resource for families going through prolonged hospital stays. They are building a new facility and we have a goal of establishing a room there in her name. In lieu of flowers please consider donating in her name at:
https://donorlynk.com/hhhnashville/hhh-online-giving/
Thank you for all the love.
EK
We lost Sareana yesterday afternoon, December 9. She died peacefully at home.
We will have a Memorial Service and Celebration late this week here in Portland, most likely Friday or Thursday. We are working out the details and I will post as soon as we've solidified a plan.
We are also planning on a less formal Celebration of Life to take place next summer in Colorado. Details on that will be worked out in the coming months.
All are welcome to come to either of these events for Sareana.
Sareana spent time at Vanderbilt Hospital and felt strongly that the Hospital Hospitality House in Nashville was a wonderful resource for families going through prolonged hospital stays. They are building a new facility and we have a goal of establishing a room there in her name. In lieu of flowers please consider donating in her name at:
https://donorlynk.com/hhhnashville/hhh-online-giving/
Thank you for all the love.
EK
Tuesday, November 21, 2017
Update from EK
Friends-
I
have some difficult news to share. It’s been an extremely busy week
and month for us.
Sareana
had an MRI one month ago that showed 2 or 3 spots that the docs
thought were possibly cancer or possibly something else, they weren’t
certain. She then had another MRI one week ago, which left no
doubt that it is cancer and that it is growing very rapidly and in a
different manner than it ever has before. Previously, the cancer grew
in the form of clearly defined masses. This time, it has begun snaking
and vining in multiple directions at once. It is moving through the
lining of her brain, her brain stem, and down into her spine, and doing
so very quickly. It is inoperable, and she has been given a terminal
diagnosis.
This
has all come to light for us over the past week as she has been
transferred from Vanderbilt Hospital in Tennessee to Providence Portland and now, finally, back
home. She is cognitively doing ok but very, very tired and mostly sleeping. Her balance, vision, and energy are all beginning to fail, and things are progressing very rapidly. She is unable to talk on the phone or read texts and emails, so if there is anything you'd like to say to her or to our family, please send a letter or card, and we can read it to her as able.
She is very
happy to be home, and is more comfortable than I’ve seen her in a long
time.
Thank you for all you do, I’ll give you an
update when I can.
Best,
EK
Saturday, October 28, 2017
Post-Surgery Update
EK here again. Overall Sareana is doing pretty decent under the circumstances. We're about 3 and 1/2 days out from surgery and the flap appears to be working properly, so that's definitely good news.
As I mentioned in the previous post, this was a bigger surgery than anything she's been through before, so she still has a long ways to go. She's on a couple of heavy antibiotics for infections they found during the surgery, and a had a PICC line installed yesterday for antibiotic delivery. They also found that she has an infection in her digestive system, apparently a result of all the antibiotics she's been taking for the past several months upsetting the balance of good/bad bacteria in the stomach. However, they think they have a solution to that in the form of yet another antibiotic for the next 5 days. This antibiotic can be pretty rough on organs, so it's good that she's in ICU where they can keep a close eye on her for this as well as surgery recovery. The bottom line is we really need to get her digestive system working as soon as possible so she can start getting some good nutrition and hopefully getting her strength back. Meanwhile she's getting nutrition via IVs etc and eating a little bit as she's able.
ICUs are not a relaxing place to be, and I think she's pretty tired from lack of sleep as well as just being really beat up from surgery, medications, etc. But, it's the place for her to be right now. Not sure how long she's gonna be down in Nashville, but it may be longer than we originally anticipated while they work to get her squared away. The team of docs at Vanderbilt really seems to be bending over backward to make sure she's getting the best care possible and that everyone is communicating with everyone else to make sure all the pieces of the puzzle are being addressed. Having her Uncle Wright close by is hugely helpful, and we think it's very clear that going to Vanderbilt was the right call, despite the fact that she's a long way from home. Sareana's mom is down there with her right now, and her dad will be coming back soon. It's really tough being with someone you love in an ICU unit with all the frustrations and interruptions and just seeing your loved one in that condition, and it's a difficult balance trying to be helpful and useful and at the same time stay out of the way when necessary. They are really doing a tremendous job, and I'm so glad they are there with Sareana.
Despite everything, Sareana is doing pretty well. She's miserable (understatement), but she's really surprisingly upbeat and positive. Of course, for anybody who knows Sareana, maybe that's not surprising. She's tough as always.
Life is busy around here with the boys. Everything's going well but we all miss Sareana quite a bit. I'm hoping to get down to Nashville next week for a few days.
That's it for now. Best,
EK
As I mentioned in the previous post, this was a bigger surgery than anything she's been through before, so she still has a long ways to go. She's on a couple of heavy antibiotics for infections they found during the surgery, and a had a PICC line installed yesterday for antibiotic delivery. They also found that she has an infection in her digestive system, apparently a result of all the antibiotics she's been taking for the past several months upsetting the balance of good/bad bacteria in the stomach. However, they think they have a solution to that in the form of yet another antibiotic for the next 5 days. This antibiotic can be pretty rough on organs, so it's good that she's in ICU where they can keep a close eye on her for this as well as surgery recovery. The bottom line is we really need to get her digestive system working as soon as possible so she can start getting some good nutrition and hopefully getting her strength back. Meanwhile she's getting nutrition via IVs etc and eating a little bit as she's able.
ICUs are not a relaxing place to be, and I think she's pretty tired from lack of sleep as well as just being really beat up from surgery, medications, etc. But, it's the place for her to be right now. Not sure how long she's gonna be down in Nashville, but it may be longer than we originally anticipated while they work to get her squared away. The team of docs at Vanderbilt really seems to be bending over backward to make sure she's getting the best care possible and that everyone is communicating with everyone else to make sure all the pieces of the puzzle are being addressed. Having her Uncle Wright close by is hugely helpful, and we think it's very clear that going to Vanderbilt was the right call, despite the fact that she's a long way from home. Sareana's mom is down there with her right now, and her dad will be coming back soon. It's really tough being with someone you love in an ICU unit with all the frustrations and interruptions and just seeing your loved one in that condition, and it's a difficult balance trying to be helpful and useful and at the same time stay out of the way when necessary. They are really doing a tremendous job, and I'm so glad they are there with Sareana.
Despite everything, Sareana is doing pretty well. She's miserable (understatement), but she's really surprisingly upbeat and positive. Of course, for anybody who knows Sareana, maybe that's not surprising. She's tough as always.
Life is busy around here with the boys. Everything's going well but we all miss Sareana quite a bit. I'm hoping to get down to Nashville next week for a few days.
That's it for now. Best,
EK
Wednesday, October 25, 2017
Surgery
EK here. It was a long surgery yesterday, but they accomplished what they wanted to, which was to get the "free flap" in place and hooked up to good blood supply. (Lex and Ebby are with her in Nashville right now, I'm in Portland with the boys.)
Surgery started yesterday around 1030 a.m. and ended after midnight; around 14 hours. Sareana is pretty beat up, but they say she is doing as well as can be expected at this point after such a procedure. She's still pretty groggy and hooked up to a lot of tubes for the usual stuff: hydration/nutrition, painkillers, antibiotic, drainage, etc. It was in many ways a more involved and invasive procedure than anything she's had done prior, so the recovery period will take longer.
The first part of the procedure was done by neurosurgery, who removed all existing hardware (mesh, screws, etc), glue, and some dead bone. This all went smoothly. They found evidence of infection and fungus, which was all removed and cleaned out, and which has been sent to Infectious Diseases for identification and will then be specifically targeted with antibiotics. Unlike previous surgeries, they removed everything foreign without replacing it; she'll have a little "soft spot" in her skull, which is apparently not a big deal. More importantly, removing anything foreign gives a much improved chance of successfully getting rid of infection. I am hopeful that the existence of infection was responsible for at least some of her symptoms, and that it's removal will help her feel a bit better in some regards.
The next part of the procedure was done by plastic surgery, who took a "flap" from her thigh and then incorporated it into the back of her head to fully close the wound. This was met with some difficulty, which is why the surgery took so long. Part of the procedure involves hooking up an artery and veins in this flap to an existing artery and veins in her head. I'm told the artery is about the size of the tip of a pen, and the smallest veins they hook up are almost thread-sized. They join them and then suture them together. All this is understandably time-consuming. The veins were fine, but the artery was a problem. The artery they originally hooked up to is in the neck, and each time they hooked it up, it would clot and they'd have to redo it. After several tries (and many hours), they went to Plan B, which was to hook up to an artery that runs just in front of the ear. In order to do this, they needed more tubing (ie vein/artery), so they had to go back to her leg, which was at this point already sewn up, and reopen to get more material. Eventually, they successfully hooked up to this other artery and were then able to finish the procedure.
The tricky part is making sure that the blood supply continues to flow properly through these new hook-ups, and they are watching very closely for any signs of clogging or clotting over the next few days. Every hour that goes by without any problems is good, and improves the chances that it will keep working, until after 3 or 4 days, if all still looks good, they'll be confident that it "took". In the meantime, if it quits working or clots, they will need to immediately take Sareana back to the Operating Room and try to get it going again. So, we're not out of the woods yet, and are keeping our fingers crossed that this thing keeps working.
That's it for now, I will do my best to keep you updated if anything changes. In any case, I'll try to post something this weekend with a progress report. Thanks for all your prayers and good vibes, they're always appreciated.
EK
Surgery started yesterday around 1030 a.m. and ended after midnight; around 14 hours. Sareana is pretty beat up, but they say she is doing as well as can be expected at this point after such a procedure. She's still pretty groggy and hooked up to a lot of tubes for the usual stuff: hydration/nutrition, painkillers, antibiotic, drainage, etc. It was in many ways a more involved and invasive procedure than anything she's had done prior, so the recovery period will take longer.
The first part of the procedure was done by neurosurgery, who removed all existing hardware (mesh, screws, etc), glue, and some dead bone. This all went smoothly. They found evidence of infection and fungus, which was all removed and cleaned out, and which has been sent to Infectious Diseases for identification and will then be specifically targeted with antibiotics. Unlike previous surgeries, they removed everything foreign without replacing it; she'll have a little "soft spot" in her skull, which is apparently not a big deal. More importantly, removing anything foreign gives a much improved chance of successfully getting rid of infection. I am hopeful that the existence of infection was responsible for at least some of her symptoms, and that it's removal will help her feel a bit better in some regards.
The next part of the procedure was done by plastic surgery, who took a "flap" from her thigh and then incorporated it into the back of her head to fully close the wound. This was met with some difficulty, which is why the surgery took so long. Part of the procedure involves hooking up an artery and veins in this flap to an existing artery and veins in her head. I'm told the artery is about the size of the tip of a pen, and the smallest veins they hook up are almost thread-sized. They join them and then suture them together. All this is understandably time-consuming. The veins were fine, but the artery was a problem. The artery they originally hooked up to is in the neck, and each time they hooked it up, it would clot and they'd have to redo it. After several tries (and many hours), they went to Plan B, which was to hook up to an artery that runs just in front of the ear. In order to do this, they needed more tubing (ie vein/artery), so they had to go back to her leg, which was at this point already sewn up, and reopen to get more material. Eventually, they successfully hooked up to this other artery and were then able to finish the procedure.
The tricky part is making sure that the blood supply continues to flow properly through these new hook-ups, and they are watching very closely for any signs of clogging or clotting over the next few days. Every hour that goes by without any problems is good, and improves the chances that it will keep working, until after 3 or 4 days, if all still looks good, they'll be confident that it "took". In the meantime, if it quits working or clots, they will need to immediately take Sareana back to the Operating Room and try to get it going again. So, we're not out of the woods yet, and are keeping our fingers crossed that this thing keeps working.
That's it for now, I will do my best to keep you updated if anything changes. In any case, I'll try to post something this weekend with a progress report. Thanks for all your prayers and good vibes, they're always appreciated.
EK
Tuesday, October 24, 2017
Free Flap 10-24-17
Dear Friends and Family,
Oregon is a beautiful place to live year-round, but Autumn in particular brings about a change in color that is quite stunning. And it’s not just shades of green, orange, and red; certain flowers fade and others bloom. Portlanders can grow and harvest throughout the seasons. Pumpkin growing contests between neighbors is the real deal here. Erin, the boys and I recently took advantage of a long weekend and the mild weather to visit a town about one hour from Portland called McMinnville. McMinnville is smack dab in the middle of wine country. They have an aviation museum with Howard Hughes’ Spruce Goose (the largest airplane ever built), as well as a Wave and Waterpark which has slides literally coming out of the fuselage of an old 747 airline that sits on the roof of the building! It’s quite a site to see and dreamland for my boys, who are turning out to be major aviation enthusiasts—like father, like son(s)! Alex and Dean attend the same elementary school as my sister's kids and so far, so good in Kindergarten and Fourth grade.
Since my last post in August there’s a lot to report regarding my health. The surgery I had in Portland which was meant to close my wound went well, and shortly after surgery I began a 7 week round of IV antibiotics. In order for antibiotics to be delivered intravenously doctors had to insert a PICC line (similar to a PORT) on the inside of my upper left arm. At first, I was self-administering 1.5 hours of antibiotics 2x/daily at home. This was super time-consuming and cumbersome as I had to carry around an IV pole wherever I went while receiving the drugs. Thankfully, after about a week of that the doctor changed me to a different IV antibiotic that only took five minutes a day and I could administer through a syringe—I was happy to see the pole go back in the box. I tolerated the second antibiotic better than the first, but seven weeks was still a long time to be on strong antibiotics. Everything was running smoothly until…
About one month after my early August surgery I had my stitches removed. Not a day later it was apparent that my wound had not sealed. Unfortunately, surgery didn’t work! So…we scheduled a second surgery on September 20 (again in Portland) called a rotational flap. This out-patient surgery took healthy tissue from the base of the back of my neck and rotated it over the open wound. Sounds a bit freaky, but it’s not an uncommon procedure for plastic surgeons to use for wound healing purposes. If there’s an interest, a more detailed explanation of a “rotational flap” can be found on the internet. Afterwards, I was put on oral antibiotics and crossed my fingers that after they took out the stitches in four weeks that my wound would be healed. Frustratingly, that was not the case. Much to my dismay, this procedure didn’t work either plus the added downside is the antibiotics made me feel really lousy: weight loss, low energy, dizziness, major gut discomfort. To be fair, I’m not positive that the culprit behind my malaise is the antibiotics, it’s more likely due to the fact that my head has a hole in it!
My third date with a surgeon in as many months now lurks on the horizon to once and for all get this wound healed. This time I'm in Nashville, TN with my dad at Vanderbilt University Medical Center. Under my uncle's watchful eye, I'm getting red carpet treatment--medically speaking. Keep in mind it’s been months since I’ve been able to do any kind of cancer treatment due to the open wound. So, the sooner this thing heals, the better. On Tuesday, October 24 I will have a “free flap” procedure which is much more involved than the other two and requires several days of close monitoring in ICU after the surgery due to risk of a blood clot. Instead of taking healthy tissue near the wound and 'rotating' it over the wound, they will cut a long piece of healthy artery and 'free' skin from another body part entirely: my thigh. This longer strip of healthy tissue will be connected from good blood supply in my neck to good supply in the back of my head. It will not look pretty, but that’s the least of my concerns—I need to get this wound closed!!! I am told that the piece of overlapping skin that will be visible on my neck can be removed after a few months of healing. My thigh incision should heal “normally” and I’ll have a scar there. The new skin on the back of my head will remain.
This complicated procedure is done by a team of doctors over 5-6 hours. The neurosurgeon will go in and take out all the “hardware” (i.e. mesh and metal plates), whereas the plastic surgeon(s) are responsible for the actual free flap. The foreign hardware will not be replaced this time so ideally there’s zero risk of bacterial infection. Essentially once my wound is healed I should have a soft spot on the back of my head, which is just fine.
I am beyond frustrated that I have had to endure so many procedures the past few months, which have not healed this stubborn wound and contributed to a decline in my health. I’m hopeful this third approach will work and I’ll be feeling better both physically and mentally soon!
As always, thank you for your support and well wishes. If you're wondering about my support system here in Nashville, well, my dad is here now, my mom is coming in tomorrow, my uncle and my good friend, Holly, live here so I'm all good on that front. As much as Erin wishes he could be in two places at once, it's really best if he keeps our boys' routine as regular as possible.
Love,
Sareana
Oregon is a beautiful place to live year-round, but Autumn in particular brings about a change in color that is quite stunning. And it’s not just shades of green, orange, and red; certain flowers fade and others bloom. Portlanders can grow and harvest throughout the seasons. Pumpkin growing contests between neighbors is the real deal here. Erin, the boys and I recently took advantage of a long weekend and the mild weather to visit a town about one hour from Portland called McMinnville. McMinnville is smack dab in the middle of wine country. They have an aviation museum with Howard Hughes’ Spruce Goose (the largest airplane ever built), as well as a Wave and Waterpark which has slides literally coming out of the fuselage of an old 747 airline that sits on the roof of the building! It’s quite a site to see and dreamland for my boys, who are turning out to be major aviation enthusiasts—like father, like son(s)! Alex and Dean attend the same elementary school as my sister's kids and so far, so good in Kindergarten and Fourth grade.
Since my last post in August there’s a lot to report regarding my health. The surgery I had in Portland which was meant to close my wound went well, and shortly after surgery I began a 7 week round of IV antibiotics. In order for antibiotics to be delivered intravenously doctors had to insert a PICC line (similar to a PORT) on the inside of my upper left arm. At first, I was self-administering 1.5 hours of antibiotics 2x/daily at home. This was super time-consuming and cumbersome as I had to carry around an IV pole wherever I went while receiving the drugs. Thankfully, after about a week of that the doctor changed me to a different IV antibiotic that only took five minutes a day and I could administer through a syringe—I was happy to see the pole go back in the box. I tolerated the second antibiotic better than the first, but seven weeks was still a long time to be on strong antibiotics. Everything was running smoothly until…
About one month after my early August surgery I had my stitches removed. Not a day later it was apparent that my wound had not sealed. Unfortunately, surgery didn’t work! So…we scheduled a second surgery on September 20 (again in Portland) called a rotational flap. This out-patient surgery took healthy tissue from the base of the back of my neck and rotated it over the open wound. Sounds a bit freaky, but it’s not an uncommon procedure for plastic surgeons to use for wound healing purposes. If there’s an interest, a more detailed explanation of a “rotational flap” can be found on the internet. Afterwards, I was put on oral antibiotics and crossed my fingers that after they took out the stitches in four weeks that my wound would be healed. Frustratingly, that was not the case. Much to my dismay, this procedure didn’t work either plus the added downside is the antibiotics made me feel really lousy: weight loss, low energy, dizziness, major gut discomfort. To be fair, I’m not positive that the culprit behind my malaise is the antibiotics, it’s more likely due to the fact that my head has a hole in it!
My third date with a surgeon in as many months now lurks on the horizon to once and for all get this wound healed. This time I'm in Nashville, TN with my dad at Vanderbilt University Medical Center. Under my uncle's watchful eye, I'm getting red carpet treatment--medically speaking. Keep in mind it’s been months since I’ve been able to do any kind of cancer treatment due to the open wound. So, the sooner this thing heals, the better. On Tuesday, October 24 I will have a “free flap” procedure which is much more involved than the other two and requires several days of close monitoring in ICU after the surgery due to risk of a blood clot. Instead of taking healthy tissue near the wound and 'rotating' it over the wound, they will cut a long piece of healthy artery and 'free' skin from another body part entirely: my thigh. This longer strip of healthy tissue will be connected from good blood supply in my neck to good supply in the back of my head. It will not look pretty, but that’s the least of my concerns—I need to get this wound closed!!! I am told that the piece of overlapping skin that will be visible on my neck can be removed after a few months of healing. My thigh incision should heal “normally” and I’ll have a scar there. The new skin on the back of my head will remain.
This complicated procedure is done by a team of doctors over 5-6 hours. The neurosurgeon will go in and take out all the “hardware” (i.e. mesh and metal plates), whereas the plastic surgeon(s) are responsible for the actual free flap. The foreign hardware will not be replaced this time so ideally there’s zero risk of bacterial infection. Essentially once my wound is healed I should have a soft spot on the back of my head, which is just fine.
I am beyond frustrated that I have had to endure so many procedures the past few months, which have not healed this stubborn wound and contributed to a decline in my health. I’m hopeful this third approach will work and I’ll be feeling better both physically and mentally soon!
As always, thank you for your support and well wishes. If you're wondering about my support system here in Nashville, well, my dad is here now, my mom is coming in tomorrow, my uncle and my good friend, Holly, live here so I'm all good on that front. As much as Erin wishes he could be in two places at once, it's really best if he keeps our boys' routine as regular as possible.
Love,
Sareana
Wednesday, August 9, 2017
Successful Surgery
EK here:
Sareana had a successful surgery yesterday evening and is recovering well. The neurosurgery team first removed her old mesh and associated hardware, then removed some cement and plaster-type stuff that was in there for form and to hold mesh in place. They reported no obvious signs of infection, which is good. The various items/materials that were removed were swabbed and/or sent to Infections Diseases for analysis. {My understanding is that they take a culture and then allow it to grow into a bacteria (which can take a few days) which will then be identified and specifically targeted with the most appropriate antibiotics.} Then the area was cleaned and irrigated, followed by application of an antibiotic. Then the Plastic team closed the incision. The surgeon (who everyone seems to think of pretty highly) determined that there was sufficient healthy tissue to close the wound "conventionally", i.e. no skin graft or flap required. However, being a plastic surgeon, he did it with a different method and type of suture such that there is less tension on the incision itself and a greater portion of the load is carried by adjacent healthy tissue, thus allowing a better healing process.
Meanwhile, standard first night in the hospital: lots of interruptions, and it has taken awhile to get the meds figured out to get Sareana's pain under control. Looks like we're getting that squared away and she is currently getting some much needed sleep. She is lucid and already able to walk without assistance, so overall in pretty good shape under the circumstances. Although she has quite a bit of pain, it's less than her last surgery and over a smaller area of her head and neck. Looks like we may be in hospital a few days until they get the culture and resultant antibiotic plan figured out. That's all for now. Best,
Erin
Sareana had a successful surgery yesterday evening and is recovering well. The neurosurgery team first removed her old mesh and associated hardware, then removed some cement and plaster-type stuff that was in there for form and to hold mesh in place. They reported no obvious signs of infection, which is good. The various items/materials that were removed were swabbed and/or sent to Infections Diseases for analysis. {My understanding is that they take a culture and then allow it to grow into a bacteria (which can take a few days) which will then be identified and specifically targeted with the most appropriate antibiotics.} Then the area was cleaned and irrigated, followed by application of an antibiotic. Then the Plastic team closed the incision. The surgeon (who everyone seems to think of pretty highly) determined that there was sufficient healthy tissue to close the wound "conventionally", i.e. no skin graft or flap required. However, being a plastic surgeon, he did it with a different method and type of suture such that there is less tension on the incision itself and a greater portion of the load is carried by adjacent healthy tissue, thus allowing a better healing process.
Meanwhile, standard first night in the hospital: lots of interruptions, and it has taken awhile to get the meds figured out to get Sareana's pain under control. Looks like we're getting that squared away and she is currently getting some much needed sleep. She is lucid and already able to walk without assistance, so overall in pretty good shape under the circumstances. Although she has quite a bit of pain, it's less than her last surgery and over a smaller area of her head and neck. Looks like we may be in hospital a few days until they get the culture and resultant antibiotic plan figured out. That's all for now. Best,
Erin
Tuesday, August 8, 2017
Health Update 8-8-17
Hello friends,
It's possible that you'll be left with questions after reading this post. Please know when I'm feeling better your questions will get answered. For now here's the latest...
On the upside we made our way to Oregon in mid-July to a beautiful, empty house awaiting our boxes and voices to fill the rooms. It has been an overwhelming experience to move in such short order, but we did it! Everyone is happy:)
So, it was no surprise to me that one morning about two weeks ago that I woke up feeling really lousy. I spent the day in bed and blamed it on exhaustion and over-doing it. The only problem was that one day in bed turned into another and another. And now I basically feel really lousy all the time. I'm constantly tired, I do not have much of an appetite, my stamina is really low, I experience vertigo, and a lot of pain in back of my head and at times feel nauseous. This definitely doesn't describe me at my norm, this feels way different and it's not much fun. So, I made an appointment with a neurosurgeon at Oregon Health and Science University (OHSU) this past Friday to determine what might be going on. He agreed with wound specialists who have been trying to heal my wound that I have a mild infection. The infection stems from two wound openings in the back of my head. They are along the incision of my three previous brain surgeries; the tissue is not as strong as it once was and therefore my skin did not heal optimally, leaving two small, yet significant openings. The openings have been well covered, but since this is not a "closed" system- meaning tissue connected to tissue, it's entirely possible bacteria has found its way in there and is causing my malaise. Interestingly enough, air has also had a chance to seep through these openings, which could be cause of my vertigo. Airhead for sure!
The solution to the above problem is to go in for surgery. This surgery has come about quickly, but that is intentional. It's really important the doctors get any bad stuff gets out before things get worse (i.e. meningitis). It sounds like they will go in and replace the titanium mesh that one can see through the hole in my head and then use a skin graft to seal the openings.
Though the thought of going in for surgery today depletes me, I'm happy to get this over with if it means I will get back to my norm, which is how I felt even one month ago. The same kind of recovery will be required from May, but I'm hopeful I'll bounce back quickly.
My sister will update you after my surgery on this blog. Please keep in mind with an evening surgery (4p) that may get "bumped" to the next day, you may not hear anything until tomorrow.
Thank you for circling me once again with love and prayers. I wish I didn't have to go through this again, but I'm trying hard to keep my chin up, taking a deep breath and doing what I have to do. My sweet boys, loyal husband, loving family and friends need their mom, wife, sister, daughter and friend.
love,
Sareana
It's possible that you'll be left with questions after reading this post. Please know when I'm feeling better your questions will get answered. For now here's the latest...
On the upside we made our way to Oregon in mid-July to a beautiful, empty house awaiting our boxes and voices to fill the rooms. It has been an overwhelming experience to move in such short order, but we did it! Everyone is happy:)
So, it was no surprise to me that one morning about two weeks ago that I woke up feeling really lousy. I spent the day in bed and blamed it on exhaustion and over-doing it. The only problem was that one day in bed turned into another and another. And now I basically feel really lousy all the time. I'm constantly tired, I do not have much of an appetite, my stamina is really low, I experience vertigo, and a lot of pain in back of my head and at times feel nauseous. This definitely doesn't describe me at my norm, this feels way different and it's not much fun. So, I made an appointment with a neurosurgeon at Oregon Health and Science University (OHSU) this past Friday to determine what might be going on. He agreed with wound specialists who have been trying to heal my wound that I have a mild infection. The infection stems from two wound openings in the back of my head. They are along the incision of my three previous brain surgeries; the tissue is not as strong as it once was and therefore my skin did not heal optimally, leaving two small, yet significant openings. The openings have been well covered, but since this is not a "closed" system- meaning tissue connected to tissue, it's entirely possible bacteria has found its way in there and is causing my malaise. Interestingly enough, air has also had a chance to seep through these openings, which could be cause of my vertigo. Airhead for sure!
The solution to the above problem is to go in for surgery. This surgery has come about quickly, but that is intentional. It's really important the doctors get any bad stuff gets out before things get worse (i.e. meningitis). It sounds like they will go in and replace the titanium mesh that one can see through the hole in my head and then use a skin graft to seal the openings.
Though the thought of going in for surgery today depletes me, I'm happy to get this over with if it means I will get back to my norm, which is how I felt even one month ago. The same kind of recovery will be required from May, but I'm hopeful I'll bounce back quickly.
My sister will update you after my surgery on this blog. Please keep in mind with an evening surgery (4p) that may get "bumped" to the next day, you may not hear anything until tomorrow.
Thank you for circling me once again with love and prayers. I wish I didn't have to go through this again, but I'm trying hard to keep my chin up, taking a deep breath and doing what I have to do. My sweet boys, loyal husband, loving family and friends need their mom, wife, sister, daughter and friend.
love,
Sareana
Friday, May 26, 2017
Moving on...
Greetings Friends and Family,
To say May has been a busy month is quite an
understatement, which explains why this note is so lengthy. My third diagnosis
of brain cancer has led to big, unexpected changes for the Kelly
Family. Though we would much rather not be dealing with a third cancer diagnosis
and the mess it creates, we are hanging in there and looking forward to some
awesomeness among all the muck. A few things cancer couldn’t mess with: Alex’s
9th birthday, Mother’s Day, a May snowstorm, end of the school year activities, date
night with Erin, and my courage in the face of adversity.
First, I’ll update you on my health. There is a lot
to tell, so I’ll rewind a bit. I had brain surgery on Monday, May 1st and learned
that same day cancer was back. Needless to say, my family and I were devastated
that this diagnosis resurfaced for a third time. Three
bits of good news amidst the bad were that pathology revealed it was the same type
of tumor I’ve had twice before: Medulloblastoma. This is good because it wasn’t a
different, more aggressive type of brain cancer. The second positive outcome
from surgery was that my neuro-surgeon removed the entire tumor (a.k.a. total
resection). The third, and the most important bit of good news post-surgery was
that as soon as I woke up from anesthesia my cognitive and neurological
abilities were all intact. I was/am still Sareana!
The day after surgery, May 2nd, I was discharged from
the hospital. Sounds quick, but part of the health professionals’ reasoning is
to get a patient up and about and out of the hospital (where many germs reside)
and see how he/she does on the “outside.” So, I walked away with hardcore pain
killers and detailed instructions on how to care for my incision. The incision
instructions were important because it is the area most susceptible to infection,
which is very serious. My incision is rather significant and strangely enough
in the shape of a big question mark. Why? Well, they needed to
make a longer cut than my two previous surgeries based on where the tumor, or what
we had hoped was only scar tissue, was located. I’d post a picture of the back
of my head, but I’d rather you just use your imagination. It’s not for
everyone. However, to my surprise Alex and Dean have proven not to be unnerved one
bit by the back of their mom’s gruesome-looking bald head. In fact, they have
even taken to arguing about who gets to clean my incision with peroxide each
day until stitches are removed! Alex and Dean are remarkable human beings. Future Dr. Kellys perhaps?!?!
The first two weeks post-surgery
were spent taking it easy at home. Restful sleep sounds like it would be a big
part of that recipe, but lying down was (and still is) my most uncomfortable position
to be in. At first my neck muscles were so sore and weak that I needed help
lifting my head to get out of bed. I can’t lie on my back comfortably because that
is directly where my incision and prickly stitches are located, rolling over to
my left meets more stitches and discomfort because of the pressure on the area of my brain that is trying to heal. The right side of my head has also proven to be tricky to
sleep on because of hip discomfort (there’s not a whole lot of “meat” on my
bones right now). To cap it off, lying on my stomach is off limits due to neck pain.
Plain and simple, it’s hard to get comfortable no matter how many pillows get
involved. I wish it was possible to sleep standing up! After rereading this
paragraph, my description, though accurate, actually sounds a lot worse on
paper. I’m hoping next week when my stitches are removed, that restful sleep resumes.
Nothing I can’t handle.
At the end of Week Two post-surgery I had a spinal tap
(a.k.a. Lumbar Puncture or LP) to determine if any cancer cells had metastasized
to my spine. Fortunately, the risky procedure went smoothly and I didn’t suffer
from a painful spinal headache, which is a possible side effect I experienced
in 2008. More importantly, the LP results were negative= no cancer in my spine!
Week Three post-surgery (this week), I began the first of
two treatment phases designed by my neuro-oncologist at Duke. I am taking a daily
chemotherapy pill. So far, I’m
tolerating it well. I stress “so far” because I’m well-aware that four days is not enough time to determine how I'll manage long-term. I’m slated to take this daily dose of
chemotherapy for six months. The second part of my therapy involves a
monoclonal antibody (a fancy way of saying “targeted” cancer therapy). This
comes in the form of a 30-minute infusion that I’ll receive every fifteen days at
the local cancer center. To summarize, my combined therapies will be a daily dose
of chemo in the form of a pill and an IV infusion of a monoclonal antibody
twice a month. Both therapies are planned for a total of six months, but I take
this timeline with a grain of salt knowing that it is dependent on how I’m
tolerating the therapies. In addition, a new therapy could be introduced at any
time, which is left up to the experts.
As if all the above paragraphs about my health weren’t enough information,
there are a myriad of other things going on in our lives. The biggest and greatest piece of news to share is that we’re moving to
Portland, Oregon in July! We not only bought
a house in Portland last week, but we also sold
our house in Fort Collins on the very same day! The markets are rather hot in
both places and we have Nicola and my brother-in-law, Dave, to thank for
helping make the purchase of our new home from afar a success! We toured our
new home via Zillow and FaceTime—not ideal, but these are not ideal
circumstances.
There’s no doubt we wouldn’t be moving to Portland (at least
not so soon) if I hadn’t received a third brain cancer diagnosis this month. It
makes me terribly sad to leave beautiful, sunny Colorado, our friends and
neighbors, the access to outdoor awesomeness from our driveway, the boys’
school, my sister-in-law’s family, the school where I worked so hard to
establish myself as a teacher again. But alas our family’s way of life has been
interrupted abruptly and turned upside down by cancer once again. It’s nothing
Erin and I haven’t weathered before in the last nine years; it was tough the
first two times, but this third recurrence has put an even darker cloud over my
unknown prognosis. I’m most broken-hearted for Erin and my boys. I’ve wiped
away an endless stream of tears the past several weeks, but the fact is that I’m
still here today, so I continue to put one step in front of the other and carry
on the best I can as mother, wife, daughter, sister, and friend. Part of my
ability to breathe fluidly right now is knowing that with this move to Portland,
Erin and my boys will be taken care of no matter what. Living close to my
sister and Dave brings calm to the beating of my heavy heart. My sister’s
children and my boys will attend the same elementary school and we are
returning to a familiar city and neighborhood that we love and know so well.
Aside from living closer to my sweet sister’s family,
another positive of moving to Oregon relates to Erin’s job. Living in Portland
will significantly decrease the amount of time he commutes to his pilot base in
San Francisco (where he starts and ends each trip). And the hope is that
someday he’ll even be based in Portland, which would be a benefit to all of us
because he’d be able to spend more time at home and less time commuting, plus it would be a huge benefit to his overall wellness. I must add here that I may be tough and resilient, but that my dear husband
has those same inherent characteristics. Erin has endured so much over the
years because of my poor health status, but he has never wavered or given up on
me. He has the great responsibility of being a dad, a husband, a caretaker and
all while being the sole provider for our family. From the outside I imagine
our situation could be viewed as unfortunate, unimaginable, and unfair; from
the inside, it feels unfortunate, unimaginable and unfair, but not always. Cancer
has given Erin and me a unique perspective on the power of love and commitment not
only to each other, but to our children in the face of uncontrollable circumstances.
It has forced us to appreciate each day we have together. I’ll always be
grateful for that chapter in our love story.
I’d also like to publicly post a special thank you to my mom
and dad who are a remarkable example of what parental love and support looks
like throughout a child’s entire life.
Thank you for reading this long note and for your continued
thoughts and prayers. I hope you and your family are well wherever you may be.
Love,
Sareana
P.S.: My next post will likely be after we are settled in
Portland at the end of the summer.
Erin, Dean and the Cub (future pilot? yes.)
Dean and Alex's last day of school, May 26, 2017
(future doctors? maybe:)
Monday, May 1, 2017
Surgery Complete
Dear Family and Friends,
Sareana is safely out of surgery and recovering well. Unfortunately, the initial pathology indicates that the growth is a recurrence of medulloblastoma (the same malignant tumor she's had in the past). They were able to remove the entire tumor ("total resection"), and we are thankful that the surgery went smoothly. She's mentally sharp, and we will keep our focus on a strong recovery. It will be a couple of weeks before we get final pathology results, and we'll have more information after that.
I'm thankful to all of you for keeping her spirit full and reminding us all of the love that surrounds her and her family.
With love,
Nicola
Sareana is safely out of surgery and recovering well. Unfortunately, the initial pathology indicates that the growth is a recurrence of medulloblastoma (the same malignant tumor she's had in the past). They were able to remove the entire tumor ("total resection"), and we are thankful that the surgery went smoothly. She's mentally sharp, and we will keep our focus on a strong recovery. It will be a couple of weeks before we get final pathology results, and we'll have more information after that.
I'm thankful to all of you for keeping her spirit full and reminding us all of the love that surrounds her and her family.
With love,
Nicola
Saturday, April 22, 2017
April 2017 Update
Dear Friends and Family,
I hope this message finds you well wherever you are in the
world. My last blog was many months ago and since then I have been busy
enjoying my family, my love, and my life. I’ve been busy taking care of my boys, substitute teaching, getting
bimonthly check-ups at Duke and taking care of myself. So, it is with deep
sorrow that I must write again to inform you of some health news that I
received recently that I really was hoping not to hear.
Typing these words make the reality of this moment rather
surreal. However, I want to inform you all that I’m scheduled for brain surgery
at Duke Hospital in Durham, NC on May 1.
A little history follows…My neuro-oncologist has been monitoring me closely with MRI scans since my previous craniotomy on July 10, 2015. Up until last month my MRIs were all “clean.” Every six months he adds a screening to my visit called a PET scan. Therefore, I was scheduled for both an MRI and PET at Duke in March. The PET scan was “stone cold,” a term radiologists use to indicate that there is nothing noteworthy going on in my brain—good news. However, my MRI results were not as conclusive. There was a small, yet noticeable change since January on my MRI in the area where my original tumor was located—not such great news. With two conflicting scans he decided he’d like to see me back in six week instead of my usual eight to redo both scans. That meant heading back to Duke just a few days ago accompanied by my Uncle Wright, a well-regarded doctor himself, with the hope I’d walk away “clean” on both fronts. Unfortunately, that wasn’t the case.
On Tuesday, April 18 I learned that my PET was again “stone
cold,” but the MRI showed additional growth in the same area they noted in March.
This means something is likely growing in my tumor bed, but they don’t know
what it is. Cause as to why one scan reflects zero activity and the other a
change could be due to a false negative PET. A big question mark for all. And
the only way to find out is to completely remove whatever they are seeing on my
MRI with surgery. I have already met my neuro-surgeon and he feels confident I
will do well with the surgery.
Though this is not the news any of us wanted to hear, it is really important to note that my
doctor’s initial and current belief (as well as the consultation of two other
neuro-oncologists) is that this enhancement or change we are seeing on my MRIs is
NOT a brain tumor and only scar
tissue from radiation (a common occurrence), but that opinion can only
be proven if it’s surgically removed. The option to do nothing is not wise
because we are seeing a pattern of growth whatever it is. And if it is indeed a
tumor it’s better to catch it early and proceed from there.
And so, on Monday, May 1 I will have brain surgery at Duke
Hospital in Durham, NC. If all things go according to plan I’m told the week
should look something like this:
4/30 Sunday night: sleep overnight at the hospital
5/1 Monday morning: surgery; no definite time
5/2 Tuesday: recovery in the hospital
5/3-5/5 Wednesday-Friday: recovery in Durham hotel with Erin
and my Dad
5/6 Saturday: fly home to Fort Collins
It goes without saying this is an enormous weight to bear
both physically and emotionally. My body and I are pretty darn tired of being
on cancer’s rocky edge. I’m also very sad to have to go through this again,
particularly for the affect it has on my whole family. Erin is unbelievably
strong and loving and my five and nine year-old boys are so sweet and innocent.
Erin, my parents and sister are amazingly supportive and are dropping
everything to come to my aid. It stings to my core every time I think about
leaving them behind, but there’s nothing I can do except buck up and see this
through. It’s no secret that any surgery carries with it risk, so being scared
is OK, but I’m hanging on to the fact that I’ve done this before—twice in
fact-- and I’ve recovered swiftly. I have a healthy mind and outlook, and I’ll
be back at home recovering soon with an entire summer to look forward to. My dad and Erin will be with me at Duke and my
mom and sister, Nicola, will be taking care of Dean and Alex here at home in Fort Collins to
keep their routine normal. That loving support as well as yours will also help
see me through. Positive thoughts and deep breaths are already embedded in my
daily regime so it is with love and compassion that I sign off and wish you and
your families well.
Love, Sareana
FYI: Nicola will update you on this blog regarding
how I’m doing post-surgery at some point on May 1. The surgeon told me he will
likely be able to identify whether it’s a cancerous tumor or simply scar tissue directly
after surgery even though its true pathology will take several days
to determine post-operation.
This picture was taken recently on our Spring Break vacation with a visit to the Hoover Dam in Nevada. We had a great trip!
Subscribe to:
Posts (Atom)