Archived Updates
As many of you know Sharon and I have become quite involved in the American Cancer Society Relay for Life which was on the weekend of June 10th. Last year we were mere observers of the event in Eastern Lake County, but this year we both chaired a Committee. Sharon was the Survivor Committee Chair and I was the Logistics Committee Chair. Back in the Spring we both attended a training in Akron so we would be prepared for our endeavor. I must admit I went to the training to support Sharon, but by the time I had left I was signed up. Still trying to figure out how that happened. Anyway after that it was full steam ahead. In conjunction with our duties as Chairs, Sharon also was our team captain. She took all this on with the same vigor as she has with her battle with cancer.
Sharon recruited friends and family to be team members and everybody was eager to sign up. We were overwhelmed by the support and enthusiasm that everybody had. Everybody chipped in with the fundraising effort and all toll we raised $6,200. Not bad for a first year team. This was good enough to put us in first place for online donations for which we brought home the first of our two trophies.
Our team name was Sharon's Hope Brigade. Sharon and I from the beginning have seen her diagnosis and treatment as a call to arms and battle that must be won at all cost. Therefore, this name seemed appropriate. For the event, our team was decked out camouflage tshirts with "Sharon's Hope Brigade, Operation: Enduring Hope" printed on the front. We looked good. Our campsite was set up with a GP tent borrowed from the Ohio National Guard and we sold dog tags of all sorts for our on-site fundraiser. We won a second trophy for Best Team Theme.
We are already looking forward to next year. We set the bar high this year so it will be a challenge to exceed what we did, but we are up to the challenge. Start thinking about themes for next year's team. We have already gotten a few good ideas. Keep 'em coming!
Erica's Special Fundraiser
Erica had a fundraiser of her own on site. She really has taken a positive attitude concerning this whole situation. She started trying to sell anything she could to raise money. She attempted to sell everything in the house, from her toys, trinckets to dixie cups. Then she hit on something. She started drawing and coloring original pictures and selling them. She did this once and came home with about $20.00. After talking with her for a bit we came up with "Kids for a Cure Artwork". We asked her 1st grade teacher if she would be willing to allow Erica to explain to her class what she was doing and to give her classmates time to draw/color pictures of their own to be sold. Her teacher was very willing. Thank you Mrs. Leskovec. Erica got up in front of her class as well as one of the other 1st grade classes and told them about Relay and what the money raised from the pictures would be used for. We had come up with a couple of templates. On top of one were the words "Hope is..." and the other "Love is...". The kids could pick either one. Erica came home with a pile of original works of art. We put these in a binder, set up a table and made a "Kids for a Cure Artwork" sign and she started selling. When all was said and done she raised around $50.00 to donate to the American Cancer Society. GREAT JOB ERICA!!!!
Thank you to everyone who participated and made donations to this very worthy cause.
A Special Thank you to the businesses/groups that supported us!
The Shirt Factory Canterbilt, Inc. Germano's Jewelers Mike Reed Travel, Inc.
Charlie's Restaurant Painesville Rotary
Sharon's Hope Brigade Members
Sharon Lohan John Lohan
Erica Lohan Libby Lohan
Karen Lohan Jack Lohan
Tracie Sirlouis Katie Sirlouis
Sarah Sirlouis Paul Schwarten
Darcia Schwarten Cheryl Baibak
Kim Wasielewski Melody Platt
Sharon Rohler Maureen Canter
Sammy Canter Jean Wasielewski
Phil Wasielewski Dan Schwarten
Laura Hurley Tammy Roberts
Alexa Roberts Dan Vargo
Cindy Vargo Lauri Carter
Mark Carter Erin Weigand
Chris Weigand Steve Drazdik
August 4, 2005
First of all, I must apologize to anyone who has been checking out this website in the hopes of seeing a new update,
only to be disappointed when realizing it's still the same (well, with the exception of the monstrous DVD listing!!). Although this website is easier
for John to maintain, I have been derelict in my duties to supply him with updates. I have just completely lost track of time ... it feels (to me anyway)
that time has been clipping along at an alarmingly fast speed lately. I feel like I blinked and it was the 4th of July already and then I blinked again
and it's now just 3 weeks before school begins ... I really need to get some toothpicks and stop this blinking before it gets out of hand :-) Anyway, much
has been going on here in Lohan-Land so I'll try to hit the highlights for you.
I have now completed 4 cycles of chemo and fortunately, after working with my Dr. and nurse in June on some solutions to my side effects, have had
two better months. I still can tell the difference in my energy level the weeks I'm on and I still have some of the stomach issues (just not as bad or for as long),
but for the most part the chemo weeks are manageable. My neighbors have once again really come through for us and have been bringing dinners over during chemo weeks
which is a tremendous help and relief - giving us one less big thing to worry about! It seems like our busiest week of the month has been chemo week - but I think that
may be a good thing because it doesn't allow me alot of time to sit around and think about everything or dwell on any of the negatives ... I just have to go on living my
crazy, hectic, wonderful life!!
So, what have we been doing? Well, we've had great weekend visits with family and friends in Pittsburgh, Norton, Ashland and Indiana; the girls have been swimming or doing
the Slip-n-Slide almost daily trying to beat this heat; they've also been having many playdates and several sleep-overs (or almost sleep-overs - we've driven a few homesick
kids back to their own beds before midnight :-); we've seen some good movies and some so-so ones; mini-golfing; bowling; bike rides and walks and so on and so on .... I started
going back to a Ladies Bible study with my friend Linda which has been very inspiring and spiritually uplifting and I've committed to walking a couple of miles with a few of my
neighbors 4 nights a week, which should help with any extra pounds the new steroid prescription might pack on!
There's lots more I want to try to cram into these last few weeks before school starts too ... next weekend we're going back to Idlewild for our little mini-family vacation,
there's a bike trail I've been wanting to take the girls to; I want to go tour the YMCA dream-house (of course, I'd like to win it too, but we'll see!!); we're doing the neighborhood
garage sale in 2 weekends and then the neighborhood block party (I volunteered to coordinate it this year!) ... YIKES, talk about time flying ... with that busy schedule time might just
rocket launch!! Then I start babysitting again the week before school starts ... Erica starts on the 24th and Libby starts Kindergarten on the 29th!! I have also picked up a new baby
to watch ... his name is Lane and he's 3 months old - his parents just moved into our neighborhood. I'll have him 3 days a week from 7:15 to 5:15. My days will be very full with him
and Sophie (she's 2 1/2) full time and 3 others part-time (before school).
I wanted to let you all know about something special being planned for my 1st Chemo Buddy, Hanna. Anyone who followed her story or visited her website may realize that the 1 year
anniversary of her passing is coming up on August 9th. Well, her mom is planning a very special tribute to her on that day ... at 5pm CST they have planned a balloon release from her
gravesite and she has also asked that anyone else anywhere participate with them from their homes or the beach or park or wherever. Tammy (her mom) said in her last update that there
were over 30 states and 5 countries represented so far! We are planning to release some balloons in her honor from here. You can visit her website to learn more about this amazing
family and beautiful Angel. Let me know if you think you might want to participate.
Last but certainly not least, guess what I did?!?!? I volunteered to be the Chairperson for next year's Eastern Lake County Relay for Life!! Yep, after all John's teasing me about
running the whole dang thing, I went and did it. I'm very excited about it and I'm sure you'll hear more and more about it in future updates!
That's enough for now ... didn't mean to write a novella ... guess that's what happens when I don't update regularly. I will try to do better from now on. Blessings to you all who
continue to check in on me and our family.
In love and friendship,
Sharon
September 9, 2005
Another three months have gone by, which means it was time for another MRI. We are still looking good. Sharon remains "stable". This is very good news and her Oncologist was very pleased with what he is seeing (or not seeing as the case may be).
If Sharon were typing this she would probably embark on a dissertation about how busy we have been which wouldn't be a stretch. She would probably say something like:
The summer is over both girls have started school,
The backyard has even seen the closing of the pool.
Libby and Erica are off to a great start,
Sharon is getting used to her and Libby being apart.
Sharon is keeping herself busy,
Watching a baby who from the front goes whizzy.
This is something new for her to deal with as his diaper unfurls,
Since her previous experience is limited to girls.
She also watches a toddler and others part time,
Getting them breakfast and on the bus on time.
The baby is growing more comfortable each day,
And he doesn't seem to mind that with Sharon he must stay.
Erica and Libby are constantly on the go,
Which means Sharon and I are back and forth to and fro,
With Baton, Soccer and now Cheerleading on the docket,
It would be helpful time wise if the minivan were a rocket.
So soccer games, football games and parades are the norm,
The only rest we get is if there is a storm.
So enough about the girls and what they do,
Sharon and I have also been busy and off days are few.
Sharon put on this year's neighborhood block party,
And I organized a golf outing for those who were hardy.
Both events went off without a snag,
All had fun, what a party and outing we can brag.
Sharon is doing pretty well on her chemo weeks,
Wednesdays being the day when the side affects peak.
Only seven more cycles for her to work through,
And thanks again for the neighborhood dinner crew.
So all that being said,
There will be another MRI day in November that we will dread.
MRI days are long, with the results we must wait.
To hear the words, "You are stable." is most definitely great.
Whatever the future for our family holds,
There is much to this story that is yet to be told.
Update 12/2/05
First of all, I want to wish everyone reading this a belated Happy Thanksgiving! I hope that you all had a wonderful holiday with friends and family and good food. Please know that as I counted my blessings that day (and everyday really :-) all of you who faithfully check in on me and my family were certainly among them!
As we now enter into this period of preparation for Christmas which I feel is the Season of Miracles, I have been reflecting on the numerous miracles I have been experiencing in my own life and would like to share some of them with all of you.
The miracle of birth has been cropping up all around us lately. And that miracle, along with the miracle of modern medicine, has never been so profound and real as it was for my childhood Canadian friend Julie (her Oma - Grandma lived next door to me growing up) and her husband Matt Loewen (pronounced the same as my last name Lohan :-). Their twin babies - Matthew and Amanda - were born on Aug. 27, at 25 weeks. They were each just over a pound at birth and the initial prognosis was "guarded" at best. But now, 90 roller-coaster days later, they are doing very well ... breathing on their own, getting bottle feedings and even nursing, and are now over 4 lbs. and have had some of their initial vaccinations before they'll get to go home. If you want to read more about these beautiful Miracle babies and their amazing parents you can visit them at their website:
www.amandaandmatthew.com
Also experiencing the miracle of birth was Erin, our former nanny. She had a beautiful baby girl, Sydney Kathleen and it was like coming full circle to see my babies holding her baby!
Because of my involvement with ChemoAngels, I have come across numerous websites (mostly Caringbridge) of people (both adults and children) all over the country who have been affected by cancer. I've seen the miracle of survivors who defy the odds and are thriving and really living their lives with new found purpose (like my former Chemo buddy, Tianna).
www3.caringbridge.org/ny/tianna/
I've also witnessed the miracle of grace and strength (that I'm convinced can only come from God) that is possessed by families that have experienced the grief of losing someone to this dreaded disease and yet who find it in themselves to create a legacy of their child by doing amazing works despite their pain. (See Big Ben's site or Olivia's Grace)
www.bens-story.com/pages/9/index.htm
www.caringbridge.org/mi/oliviasgrace/
My own miracle continues...after completing 7 months of my treatment cycle, my MRI on Nov. 28 once again is stable! My doctor continues to be pleased with how the tumor is staying in check and he reaffirmed that when my 1 year cycle is over, I will go off the medication and will go back to just being monitored with regular scans. How fast this time has gone has really been miraculous to me. A year seemed like such a long time back in April when this became an ugly reality once again. During the past 8 months I've been witness to the miracle of human kindness as people have once again stepped up to help me and my family, with awesome meals from my neighbors, cards and little gifts from friends and family and even people who don't know me!
So now that I've shared some of the miracles in my life, I hope that you can reflect on the ones you've experienced in yours. May this Season of Miracles be a blessed one for you and your families! We've got a busy day here at the Lohan's ~ I'm having a Scrapbooking party and John and his dad have dates with two of the prettiest girls in the snowbelt. Tonight is the Father/Daughter ball ~ I'll post pictures later :-) It's days like this that really show me that everyday can be a miracle; if we treat it like one!
In Love and Friendship,
Sharon
Update February 27, 2006
This is just a quick update. This is a very exciting week in the Lohan household. Last night Sharon started her last week of chemo for this 12 month cycle. I can't believe it has been a year since we were told that her tumor had begun progressing again. Ever since then things have been pretty positive. Sharon has handled the chemo weeks like a true warrior. Although she feels miserable during these weeks you would not know it. She keeps things positive and maintains as best she can.
Her tumor has also remained stable during this treatment cycle which is the best news of all. Her next MRI is scheduled for March 21st. Keep your fingers crossed that this one will also show stability. If things look good, Sharon will move on with no further treatment scheduled. If we are lucky this will hold true for some time.
For those of you who know about our involvement with the American Cancer Society and the Relay for Life, things have really started to take off. Sharon is the Event Chair and I am the Logistics Committee Chair again this year. Yes, I report to Sharon (Big Surprise!). Anyway, things are already taking shape and we have had several committee meetings and team captain meetings. Our specific Relay, Eastern Lake County, will be even bigger this year…more teams and a higher fund raising goal. Speaking of growing, last year our team was Sharon's Hope, this year with the help of two great neighbors and friends (Thanks Melissa and Candy) we have expanded to a conglomerate team of three (Sharon's Hope 1, Sharon's Hope 2 and Sharon's Hope 3).
The cool thing is that everyone is very competitive and the fund raising ideas are flying. Many of you helped out last year and it was very much appreciated, but as you know the fight is not yet won. I am optimistic about Sharon's future especially when I hear (almost on a daily basis) about the advances they are making in the treatment of cancer. A cure can't be far behind. Unfortunately, like everything else it requires money to keep research moving forward. If you would like to help us with achieving our fund raising goal I have put links to our individual donation pages at the top. Most importantly we would appreciate your continued prayers and good thoughts…it is our belief that this, more than anything has gotten Sharon to this point. Also, pray that the researchers will be given the patience and persistence to keep striving towards the ultimate cure.
Again, thank you to every one of you for everything you have done to help us through this trying year, from dinners, to prayers, to just asking how Sharon is doing. It truly does mean a lot and I know we can never repay all the kindness we have been shown, but know that we really do realize how blessed our family is to have neighbors, friends, and co-workers like you all.
We will update the website with news of Sharon's MRI on March 21st.
The Lohans
April 5, 2006
I had my MRI and Doctor’s appointment on Tuesday. This was my 1st MRI after completing my 12 month chemo cycle. I have had this appointment before. 3 years ago, actually ~ when I completed my 1st cycle of chemotherapy. So even though the outcome of those appointments was the same ~ positive news that the tumor remains stable and I’ll be taking no further treatment at this time (YEA!) ~ the days couldn’t have felt more different. Allow me to explain with a little comparison:
Then: I went into my appointment feeling incredibly optimistic. The Temodar had been doing its job very well – holding the tumor “in check” and even once causing some shrinkage (remember the “It’s Shrinking” song?) I was looking at this end of treatment as a closing of a chapter in my life. I was “graduating” from the ChemoAngels program and looking forward to signing on to become an Angel myself. I was planning a 200+ people Celebration of Life party (which was kind of like planning a wedding – minus the formal attire). I had faced this beast called cancer; fought with all my might and in my mind, was victorious!
Now: Ok, still optimistic this time … however … because of the fact that 2 ½ years after that treatment ended the beast reared its ugly head again … my optimism is mixed in with some other pretty heavy emotions. Anxiety … that I won’t be taking the Temodar that was still doing its job of keeping the tumor in check anymore. Uncertainty … about how long I’ll go this time off of treatment before the cancer dusts itself off and comes back around for Round 3 (my doctor’s opinion is that it will be less time off of treatment than the 2 ½ years). Weariness … that although I am closing another chapter in this battle, it is a long book (hopefully very long)and it will likely be filled with some more challenging chapters. My doctor put things into perspective for me when he told me that I (and he) need to look at this as a long term, chronic illness and we’ll need to treat it as such. There are other treatment options for me in the future, including another oral chemo, some promising IV chemos, radiation or even another surgery.
Then: If you remember, back then I was a part of a clinical trial (a study of a different way to take the Temodar). I had THE BEST NURSE EVER as my study nurse. Laura was truly an angel on earth and was exactly what I needed back then to help me navigate this brand new world of MRI’s, blood-workups and counts, and combating chemo side effects. (Prune juice, anyone?!?) Any of you who got to meet her at my celebration party (just the fact that she came shows you what a committed and awesome caregiver she was) could see how amazing she was. I still page her when I’m in for each of my appointments and she comes out to the lobby for a hug and to let me know she still thinks about me – I miss her)
Now: Unfortunately, Laura moved to a new group within the clinic and while I was off treatment I did have another good nurse, Kathy who took excellent care of me as well. Once I had to go back on the chemo I was no longer a part of the study and was moved under my doctor’s nurse who handles all of his other “non-study” patients. Obviously she has more patients to handle and thus I do not receive the same individualized care that I had come to appreciate and expect. If you follow my updates, you’ll remember that on more than one occasion during this treatment cycle, I had to follow up with my nurse to make sure that my chemo prescription was even called in on time for me to start on time. Anyway, my new nurse now seldom even comes into the exam room during my appointments – I get a hello in the hallway.
Then: After my MRI and bloodwork we didn’t have to wait too long in the doctor’s office before Laura (above mentioned Super Nurse) came in to let me know that everything looked good and to congratulate me! It was a very celebratory feel that continued after my doctor came in and did my exam. We were all smiling and laughing and feeling very good about my progress and prognosis!
Now: Compared to that one, this was the appointment from #&$$! My MRI got done early, which meant that my doctor would likely be running behind. After waiting some time in the lobby, we were called back to the exam room … to wait some more ;-) I heard my doctor’s voice, heard him say my name, so I knew that he was talking to someone about my scans. Well, then we waited some more – an excruciatingly long time (probably 15 minutes or so) before his physician assistant came in. It was starting to feel like my appointment a year ago when the doctor shared with us that the scans showed signs of activity again. Now I don’t know her very well either; she was serving the National Guard in Iraq for most of my treatment year, but she did handle a few problems for me when my nurse was out of town. She comes in and starts asking me questions and typing my answers on the computer. She asked things like “… so you’re not experiencing any headaches?” It is at this point, as I’m staring across the tiny exam room at John whose face mirrors mine with fear and disbelief, that I feel my world closing in on me and I’m wondering “How can this be happening? How can it be growing again, especially while I’m still on treatment?” She does my exam (which in the past has always been done by my doctor) and then says, “Dr. will be in to talk with you shortly.” By this time, I am having a hard time not having a nervous breakdown so when my doctor finally does come in and says “You’re scans look good – you’re stable”; I just burst into tears and said “You’re kidding?” He took us out to the hallway to show us the scans and commented that on first glance it may appear that the area of enhancement is larger this time; but when actually measuring the area, they are the same. The MRI machine that I had this time used a larger image, thus making it seem as though it was bigger (I think this explains why the p.a. was dealing with me as though there was growth and why it was taking my doctor so long to come in.) He also compared my scan to the one from a year ago and indicated that some areas of swelling actually looked like they were smaller. All good news ~ just maybe not delivered in the best way!
Anyway, it’s amazing what a difference 3 years can make in this journey with brain cancer. What I have to remember, though, is what a difference 3 years, or 4 or even 1 or 2 can make in terms of advances in treatment! I am so grateful to be coming up on my 4th year since my diagnosis on June 13, 2002 and plan to do everything I can to help raise the funds necessary to continue those advances! Please join me by visiting our Relay For Life Web pages (see above!) and consider making a donation to support this important cause!
Sharon
June 30, 2006
Sharon had her next MRI on Wednesday (6/28) and apparently we forgot to keep our heads down. We peaked above the hedge towards the future and that dang 4x4 was poised and in full swing. It nailed us right between the eyes AGAIN! It appears that this "haze" of cells that we had been watching for the last several years finally got their act together and have formed ranks. The area has coalesced and has drawn up it's perimeter. This area has now presented definitive boundaries and has become an actual tumor (approximate size at this point is 1"x3/4"x1/2").
Now we are basically back where we were four years ago with consultations and decisions to make. We spent quite a bit of time yesterday at the clinic with Sharon's oncologist and talked about the various options that Sharon has available to her. After much discussion we narrowed it down to two choices. One would be P/C chemotherapy and the other is a second surgery.
Sharon's doctor said he was going to present her case today (Thursday) to the tumor board and get there recommendation as to which of these two choices would give her the most bang for the buck. They meet at 4:00 PM and he said he would call us after they meet to tell us what their recommendation is. He didn't wait that long...he marched her case in to his chosen surgeon and asked if it was possible to go in and get this S.O.B.
The surgeon reviewed her scans and came back with "this is definitely doable" and with what he believes is minimal risk for any long term affects from the surgery. Besides the inherent risks when doing brain surgery. The whirlwind has begun....the surgeon has already set up our consultation with us for Monday at noon. The surgery will most likely occur within two weeks. We will update the web site when we know the date of the surgery.
And now a few words from possibly the most courageous person I know....
I don't really know what to say, actually. I know, I know, that's a surprise from someone who just loves to pontificate!! I think that my beloved intro writer got all the info correct; well maybe all except for that last line anyway. I am doing okay with all of this; I'm working my way out of the initial shock of it all and am focusing on the positive ... that surgery is do-able this time. Surgery is my one shot at getting this thing put into remission ~ so my prayer and what I'd like to ask all of you to pray for, is that they can get it ALL OUT this time. I'm hoping that the cells have clumped together enough so that this, along with a more aggressive surgeon, will allow for the COMPLETE REMOVAL of this blasted tumor. So I just ask for all of your prayers for that for me and for wisdom and skill for my doctors and for strength and God's powerful loving presence for all of my family and friends who have to deal with this again (He is with me and us ~ I have stories from the last few days that I'll share at another time ~ maybe in the new "blog" John set up for us!).
And while you're praying and have God's attention, I'd like to ask that you also pray for my neighbor and friend Cindy who has also had a set-back with her lung cancer and will start a new experimental chemo trial in late July; my dear friend Becky's mom (Kathy) who's battle with breast cancer has returned in other areas and the maintenance drug she was on has stopped working; and my husband's cousin's sister (Kelly) who has been vailiently fighting her cancer for many years and is now on Hospice. Just pray for healing and for peace for all of us.
Thank you and God Bless You,
Sharon
July 3, 2006
Strap on your seatbelts everyone! And prepare for lift off! I met with the surgeon today and we are moving forward rather rapidly. To say the least. I am scheduled for surgery this Friday (July 7th). I will go in for pre-surgery prep on Thursday at 2:45pm for some high tech stuff (they'll Super Glue these things to my forehead that will aid the surgeon during the surgery via computer images ~ like an ultrasound ~ and will have a short 8 min. MRI and blood work done.) Then I'll spend Thursday night at home and will go back in early Friday morning for surgery (could be as early as 7:30AM - YIKES - good thing they'll be putting me to sleep for the surgery; I will definately need my rest:) The surgery will take approx. 2-4 hours and I'll spend the first night in Recovery and then if all goes well, 2 - 3 more nights in the hospital.
I had a good feeling about my surgeon - he seems very skilled; he is confident and straightforward, but also compassionate. He feels confident that he can go in and get all of this tumor out and the risks are minimal. He detailed all of these risks with the percentages of occurrence, but then was quick to turn the numbers around to the positive and ended with the 96% chance that I will sail through this. On a scale of 1-10, he said this surgery was a 4. He told us some stories about others he has treated with my kind of tumor with good long-term success rates (several with 20 + years Survivorship!)
John will try to update the website over the next week to keep everyone posted. In the meantime, I just really appreciate all of your messages of well wishes and prayers ~ thank you for your support!
Love,
Sharon
July 7, 2006
What a day! We were all up at 4:00 am so we could all get ready and caravan to the Cleveland Clinic at 5:00 am. Sharon was supposed to be there at 6:00 am. She checked in and they began prepping her for surgery. We were all able to hang out with her for about 15 minutes before they took her down to the operation room. Sharon was at peace with what was going to take place and was actually able to joke around somewhat. She truly is the bravest person I know. I don’t care what she says. At around 7:30 am they took her down and we (my Mom, Dad and Sister and Sharon’s Mom and Dad) all headed out to the Family Lounge area and staked out our area (after several moves we ended up back in the same area we were in originally, guess we were all a little nervous).
Anyway at about 8:30 am they paged me to the front desk to let me know that the prep and anesthesia process went well and that the surgeon started the operation at 8:27 am. The surgery only took about two and half hours ending around 10:50 am. I got paged again to the front desk and when I went up they pointed to a room and told me the doctor would meet me there to talk to me. This made me a little nervous (ok, a lot nervous) because everyone else that got paged were told that the doctor was on the phone waiting to talk to them. I went to the little room and waited for what seemed like an eternity, but was probably only a few minutes. Dr. Toms came in and shut the door and I was really shaking now not knowing what to expect. Fortunately, he didn’t string me along and immediately told me that Sharon did great (I knew that she would) and that he was able to get everything that was on the MRI and he also checked during the surgery with an ultrasound to make sure he got everything. I asked him again if he got everything to make sure that my ears didn’t deceive me and he confirmed what he had said. What occurred with Sharon’s tumor and how it developed and made surgery possible, can most likely be explained medically, but it is abnormal to say the least. A miracle happened today and now Sharon has many years!! I thanked the Doctor and wished him luck on his next case which he said was not a good one…I only pray that person has the same good fortune that we had today.
Now I was off to relay the news to everyone else. I am sorry to say that I was unable to come up with a clever way to tell them what I heard so I just blurted out "He got it all!" Then the flood gates opened and all the bottled up emotions came out. Everyone basically jumped up and cheered…quite the spectacle I’m sure. There were hugs and tears all around. The family next to us even said that they didn’t know what was going on but it sounded good and they wanted to run over and hug us too.
We were able to go into Recovery and see her after about three hours. She was pretty much out of it but she understood when I told her that he was able to get everything that was visible. She just looked at me and in hushed voice said, "Yeah me!" That’s right, Yeah, Sharon! Yeah all of us who love her.
We were able to see her again this evening to let her know that we were leaving for the night. She will be in Recovery for the night and will be moved to a room in the morning. She was pretty sore and her head hurt when we left, but the nurse said that she would get her something for the pain. She should sleep well tonight, we all should!
July 8, 2006
Well, today was another blur. This morning I got a call from the clinic and it was Sharon’s nurse telling me that Sharon wanted me to remember to bring her glasses. I took this as a good sign because she was up and wanted to see what was going on around her. I also got some news that was a little bit of a downer. Sharon had a brain seizure at 4:00 am this morning and apparently it scared the bigeezus out of her…can’t blame her there. Although this sounds bad the nurse told me when I got there that this is very common in brain surgery patients. Now I understand why when she has been asked by the various doctors over the past four years if she had experienced any seizures they always seemed a little surprised. Anyway these types of seizures are caused by the trauma to the brain from the surgery and are controllable with Dilantin until the brain heals.
Now for the good news…
Sharon was finally moved to a regular hospital room after the MRI she had this morning was read and it was deemed to be normal (what is normal anymore is what I keep asking). She was downgraded, which is a good thing and was moved to the floor that is one step below the Neuro floor. This was very good as now she is in a much quieter area where she can get some well deserved sleep. They even had her up on her feet a bit before I left this evening. Now she just needs to get strong enough so she can come home where we can really pamper her.
Although there is a chance that we will have to deal with this monster again sometime down the road everything over the last couple of days indicates that it will be caged up for some time, hopefully a really long time.
For those interested she is in room 6036, which is on the 6th floor in H60 and is room 36. If you turn right when you come off the elevator you will be looking right at her room.
If you want to call her you can call toll free at 1-800-CCF-CARE (2273) and ask for ext. 47435 or if you are local you can call 216-444-7435 which will go right to her room.
July 9, 2006
Why should today be any different in it's ability to surprise...Sharon called at 7:00 AM and said that she is being discharged today. So if all goes well she should be comfortably in her own bed snuggling with her girls sometime this afternoon.
I will update the web site again this evening once she is home.
July 12, 2006
Sorry I have not had an opportunity to get the web site updated as promised. Sharon was home on Sunday around 1:00 PM and she was feeling pretty good. She was happy to be in her own bed with her girls laying on either side of her. Sunday progressed with little fanfare and she even spent some time hanging out on the deck getting some fresh air.
Monday morning things were going great. Sharon ate a nice big breakfast (probably too big in retrospect) and was hanging out on the couch early in the day. She did go up to bed when she started feeling tired and when she came back down things turned South on us. Sharon started experiencing some severe nausea and all that goes with it. She was unable to keep any of her meds down which made things really nerve wracking because I had no way of knowing if she was getting enough of the medication with each dose or if I needed to give her more....the vast medical knowledge I have (NOT) provided me no help. Anyway the day went on and things got no better and we headed off into the overnight hours which can be very lonely when you are staring at your wife sleeping very restlessly and not knowing what is going on inside her head, literally. Needless to say little sleep was going on. She woke up around 1:30 AM and her head was killing her and the nausea was no better. I called the Clinic and they paged the Neurosurgey resident on call and we were an eyelash away from making the decision to get Sharon back down to the Clinic. After we talked for a few more minutes we came up with a med scenario to try to get her through the night until I could call her surgeon's office in the morning. More restless hours went by, but we got to the morning and by 11:00 AM (Tuesday) I had talked to the Dr. Toms's P.A. and she worked out a new med regiment which included a anti-nausea med. I think the CVS pharmicists know me by name...not sure that is a good thing. I was hoping to make it to about 70 years old before that happened.
Anyway, by Tuesday night we were able to get three doses of the Decadron down which appeared to get any brain swelling under control which reduced the head pain which in turn helped the nausea calm down. I think we have turned the corner and Sharon is starting to get back to being part of the world outside of her inner sanctum (bedroom). Hopefully things will continue to improve from here.
I know that she is feeling better because she has relocated her computer chair and is camped out with her email. This is a good sign.
Thank you again for all of the support that we have received.
July 21, 2006
They say a picture is worth a thousand words ... let's give it a try. Here are some shots of me as I'm feeling today. You can see by my hair, that everything is pretty much status quo ... I don't really look like a woman who less than two weeks ago had major brain surgery, nor do I look much different (other than the huge smile:) than the woman who before surgery still had malignant brain cancer in her head and has since had all that removed!! Just goes to show you that you really have no idea what's going on with someone just by looking at them. On the medical front, all continues to go well for me ... I had my follow up appointment at the Clinic yesterday. I got my stitches out ... pretty uneventful ... they say my head is healing beautifully (the stitches were practically already falling out). We discussed my back problems. Dr. Toms (my surgeon) speculates that the major lower back pain I have been experiencing all week was probably caused by the surgery ... some blood got into the ventricle during surgery and traveled through the spinal fluid to my lower back causing me my current pain. The good news is that he checked my X-RAY and did not see anything out of place - no bulging disks or degenerative disease - the bad news is that all I can do is wait for the pain to subside. It should be completely gone within 2 weeks, but will start to get better each day (I'm already noticing that). Now that I am allowed to take Ibuprofen, I am able to get some relief from it also. Also on the medication front, I think we've worked out my insomnia issue (I went for two nights last week unable to get a wink of sleep - I wasn't sure if it was the back pain or my inability to shut my brain off or what) ... turns out I've been taking my Dexamethazone (Steroid) all wrong. The fact that one of it's main side affects is sleeplessness, taking it when I wake up and right before I go to bed is all wrong. Now that I've started taking it with breakfast and lunch, I am sleeping much better. Speaking of medicine, John is becoming quite the pharmacist ... including the Ibuprofen/Tylenol for the back pain, I now take about 14 pills a day. I'm on an anti-seizure medicine (two different ones actually - they're weaning me off the Dilantin and starting me on Keppra) which I'll be on for several months; the Steroid Taper for a few more weeks; Colace and Pepcid to combat the side effects of the other drugs. This is down from before as I'm no longer taking an anti-nausea (that nasty side effect has passed) or the Percocet for head pain.
My surgeon reiterated again that he feels he got all of the tumor out of my head (YEA, ME!!), but all of my doctors - surgeon, oncologist and neurologist conferred and agree that we ought to continue to be aggressive with this and go ahead and start on the chemo regiment we had discussed just to be sure we hit any stray cells now. I will begin probably in the next week on the Procarbazine/CCNU protocol of Chemo (both oral and not terribly toxic, much like the Temodar); but these are designed to go after the oligodendroglioma cells (the slower growing, less aggressive cells of my tumor). Each cycle is 6 weeks and my oncologist said we'd watch and see how I tolerate it and could maybe do as many as 6 cycles of it. That seems like such a long time; but will be worth it to "take care of any cells now" and get my life back for several years when I'm done. The other major change for now, is that I will not be able to drive for 6 months from the date of my seizure (July 8th). This is the State of Ohio law and my doctors feel I should abide by it for my own protection. None of them seem overly concerned about the seizure, which they say was just a post-operative seizure caused by the trauma to my brain, nor do they think that I will have another one, especially being on the medication for it. I can live without driving for a while (I have many years of driving ahead of me); so this mostly affects John who will have to add "Chauffer- Extraordinaire" to his ever-growing list of duties:) Before we know it, the snow will be flying and I'll be behind the wheel again!
I just want to say thank you again to all of you who have been faithfully checking out the website for updates; for those of you who have called or sent mail (I LOVE MAIL!!), I am so incredibly blessed to have an amazing network of support and love. YOU ALL ARE THE BEST!! I don't even know how to express my thanks for the prayers and good wishes that were sent to me during my surgery and recovery, not to mention the beautiful flowers, the amazing food, the loving care for me and my husband and my kids ... I would not be doing so well right now if it were not for all of you. I get all chocked up when I think about how lucky I am and what on earth did I do to deserve all the great people I have in my life ... God has surely blessed me! I now ask for blessings for each of you reading this update ... may God bless you and keep you in the palm of His Hand.
With much love and grateful appreciation,
Sharon
August 16, 2006
Summer '06 is coming to an end and so it goes,
It has been interesting to say the least, as everyone knows.
When it started it seemed like any other summer season,
But something seemed off and we soon knew the reason.
A tumor had developed and history repeated,
Brain surgery was the best option and to this we ceded.
The best words that ever were heard, "Sharon did great and I got it all",
The future is now many years and will not after a few years stall.
So now we go on with activities for the fall,
From Cheerleading, Baton, Piano lessons and kicking a soccer ball.
The girls keep us busy, this much is true,
Every day there is something planned and free nights are few.
Can't forget the most important priority for the girls to do,
School starts soon and this they must do too.
Erica and Libby are eager to get back to learning,
For it is knowledge that they are yearning.
That might be a bit of a stretch, but they do love school,
If the truth were to be told they'd rather spend time at the pool.
The girls are growing up so quick and so well,
Their time as kids will seem short, this much I can tell.
The teachers they got should make education fun,
Libby has Mrs. Roberts and Erica, Mrs. Crum.
They could not have asked for better classes,
They will definitely learn quicker than January molasses.
With that all being said it's time to switch gears,
Sharon has embarked again on chemo to maximize her years.
Her doctor she trusts and with this she can say,
I will do what they say and for the benefits we pray.
Her first chemo cycle is coming to a close,
It is six cycles that her doctor does propose.
This is provided that she handles it well,
A few more cycles and we should be able to tell.
Sharon again in January will be able to drive the car,
But for now she must be content with not going far.
For it is Ohio law that prevents her from getting behind the wheel,
Six months is safe after a seizure they feel.
So we now go forward into the future with hope,
We pray that we have come to an end to this slippery slope.
We look to tomorrow with guarded ease,
Prepared to deal with difficulties for life's never a breeze.
We thank you again for your prayers and support,
We hope in a while to update this with another good report
March 19, 2007
Dear Family & Friends,
Hello from your long absent webpage author. First of all, let me apologize for my lengthy absence from this website. I actually wasn’t sure that anyone was really even looking at it anymore, but recently a few people have brought it to my attention that they do indeed check in on me from time to time and wonder where I’ve been and how I’ve been doing. And secondly I’ve been at a loss for words (I can see some of you shaking your heads in disbelief from that statement ~ Sharon, at a loss for words?!?! Do tell!) for several months and was waiting until I was in a better frame of mind to reconnect with many of the things I used to do related to my illness, like this website. Don’t get me wrong, my physical health is doing fine – I’ve had two MRI’s and check-ups since my surgery in July and both indicate that nothing has changed at the tumor site since then – still no visible sign of tumor. Praise the Lord!
My emotional health, on the other hand, has been a different story. I don’t want to bore anyone with the details, but suffice it to say that the last 8 months have been the most difficult in my entire experience. In addition to the emotional rollercoaster I went on with the trauma and shock (read: sucker punch to the gut) of a recurrence and a 2nd surgery; I’ve been dealing with new medicine related issues. First, because I suffered a post-surgical seizure, in addition to losing my driving privileges for 6 months (that was no picnic, let me tell you); I’ve had to take anti-seizure medication for the first time. Like all new medications, these came with some pretty lousy side-effects and it took me and my doctors a while to get my body regulated to taking them and finding one that causes me the least amount of physical and mostly mental side effects. This was very important to get straightened out since I’ll have to be on them for the rest of my life. It seems that since my brain allowed me to have one seizure and I do intend to drive again (Anyone who knows the schedule of activity we Lohans keep knows there is no other option): the doctors strongly recommend and encourage me to take the medication for my safety and the safety of others. The good news is that we seem to have found a medication that works for me. Secondly, even with the absence of tumor on my MRI’s; my oncologist put me on another round of chemotherapy as a precautionary measure. This time I took the chemo that my first doctors had recommended for me 4 ½ years ago – PCV. Only now, after 4 ½ years of research, they have discovered that the V in the equation had too many side effects (both long and short term) in comparison to benefits – so now it’s just PC. Let me tell you, those two are no picnic either. Although they are both oral chemos like the Temodar, I’ll take that Temodar any day. I managed to get through 3 of the 6 rounds of this treatment they wanted me to have before they decided it was causing too much damage to my bone marrow (white blood counts that were so low and “sluggish” in their ability to bounce back) and wanted to start me on a new course of treatment. After much deliberation and a million questions to my oncologist about the risks vs. benefits of aggressive treatment now as opposed to waiting until more treatment is actually needed (which will hopefully not be for a very long time); we decided at my January appt. to take a break for now from the chemotherapy. That decision has also done wonders for my mental state; just not having to constantly think about my disease and treatment everyday allows me to get on with my life and feel like myself again)
Speaking of living my life; so as not to make this entire update a list of my health woes; here are some Lohan family highlights from the last 8 months: A new school year started for Erica and Libby. They both continue their love of learning and enthusiasm for school (3rd grader Erica now gets herself up with an alarm clock each morning – quite a long way from the Kindergartener I had to dress while she was still in her bed) and 1st grade Libby does the same, just using her internal alarm clock) and this is reflected in their superb report cards. We are so proud of them.
The fall was a whirlwind of activity; with the girls participating again in soccer, peewee cheerleading and baton. Toss in some of our usual family activities like the neighborhood block party and golf outing, our parish picnic, birthday parties and baby showers, visits with family and many school activities and you’ve got our crazy life summed up in 50 words or less! John and I are teaching PSR again this year – a rowdy bunch of 5th graders who will hopefully benefit from our involvement in their religious education. We also joined a parent-child bowling league with the girls and another close family (our girls’ best friends) and despite my inconsistent performance (from 93’s one week to a 168 game – had to get that in the update – my highest score ever!); we had a great time; plus I didn’t have to cook dinner on Friday nights for about 16 weeks!
Now that I have finished this update…. WE’RE GOING TO DISNEY WORLD…seriously we are leaving on a jet plane…don’t know when we’ll be back again…actually we will be back at the end of Spring Break. I will update with a slide show when we get back…ok, how about just some photos…bye for now.
Sharon