All I can say is I am sorry for not updating my information when I have so many people looking for my status and wondering at what 'prayer level' we currently are.
Okay, let's get right to the update. The oral chemo drug did not well enough for me to stay on it. The side effects were pretty yuck also so I was okay with stopping it. My recent CT scans showed similar results to the last time---the tumors still remain in the same three areas (lymph nodes near my removed lung, in the lining of an area near my removed lung, and in my adrenal gland) and all three tumors have grown slightly. The tumor in my removed lung lining has spread and permeated my right 4th, 5th, and 6th ribs which is causing some constant pain, similar to fractured ribs. They are controlling this with medication.
All of my MD's were in agreement that I should start radiation on my ribs to shrink the tumor and mitigate the pain. I have also received a PET scan and a brain MRI. Very good news that there were no tumors in my brain, or liver, or anywhere else for that metter!! Celebration!! Because my tumors are currently confined to only 3 areas, my MD's have agreed (reluctantly) to radiate all 3 areas simultaneously. The treatments are over 4 weeks. I have just begun week 2 yesterday and all is going well.
My MD's have stopped my oral chemo drug in search of a different systemic treatment with better results. These options are being further explored while I am in radiation and I hope something can be implemented soon after my radiation ceases. I NEED a successful systemic treatment (chemo) to survive.
The current prayer status is therefore changing from orange to red! Please pray my MD's find something that helps keep my tumors controlled. I was diagnosed last December 1st and I feel I have been successfully 'living with cancer' which was the goal all along. I feel good about this past year.
Now on to the social and family aspects of 'living'. Some of our dearest friends took care of ONE of only two items on my bucket list...and I can't think of the second item! We took a luxurious private jet to the ROCK 'N ROLL hall of fame and besides a great tour, we had FRONT row seats to a Janis Joplin musical tribute which was fantastic! A private post-performance party with all the musicians lasted way past my bedtime--we had a nice conversation and pictures with the lead singer of SANTANA! WOW summaries the trip.
I was also healthy enough to make a quick trip to Dallas where an SEBS associate was getting married. I stayed with friends who hosted the wedding...and came back and changed a number of items on my current remodel job to incorporate what I saw at their lovely home. I call my first floor remodel job 'The Jaki Project' as her home was the inspiration for redoing my kitchen and first floor.
My kids are all doing well and were home for Thanksgiving. Son Dan shot his first deer which will help feed him and his roomates who are teaching down at MUHS. Jake is busy selling to make his year end goals and Abbey is studying hard for some good grades this semester @ St. Mary's in Winona, MN.
In my second week of radiation, I am feeling a decrease in the 24/7 pain I had been experiencing. All your prayers have kept me successfully 'living with cancer' for an entire year!! I pray to God everyday for ALL of you who so generously keep me in your prayers. God thinks I am a VIP when he looks at the number of prayers coming into my name. THANK YOU and I promise to provide updates when there is news to report. I will be getting scanned after I complete the radiation therapy. Hugs & Kisses to all of you. Lynn
Tuesday, December 1, 2009
Wednesday, October 7, 2009
New Treatment---New Hope
So sorry for my tardiness! I know many of you rely on this blog. Our prayers have been answered for the meantime. Apparently, God listens (we should never be surprised) because we have been directed to Northwestern and a world- renowned lung oncologist, Dr. Jyoti Patel. We were more than a little nervous because we were not sure what options remained for treatment after we were told the cancer has returned in early September, and Froedtert did not think I was a candidate for radiation. I think Dr. Patel saw the somewhat apprehensive look on our faces when she came into the room because before she even introduced herself, she said she wanted us to know that there are a few conventional treatment options available and that is before we even have to look at clinical trials. I appear to be a candidate if we ever have to go that route. There appears to be a number of ongoing trials, one of which is in Madison.
She has prescribed Tarceva, an oral chemo drug, taken daily. The side effects include rash, fatigue, diarrhea (maybe this will take care of some of the weight gain from the last drugs) so I am not complaining! I am very happy to be off those awful steroids which made me feel for a few days like I had “mad-cow” disease. I really feel pretty good on this treatment. Dr. Patel is going to keep a close watch over me scanning me every month (I am so far behind on this I am already due for my scans). The other requirement is that my liver tolerates the treatment. I had the liver function tests which turned out fine and we will go to see Dr. Patel tomorrow, Thursday which will be 4 weeks on my new treatment. If this treatment didn’t work, we will move on to the next one.
I remain optimistic and I am grateful for all of the continued prayers and good thoughts not only for me but for all of my family. I have said this countless times, but words cannot express how thankful I am for all the love and support I have received over these many months. I love you all and plan to be around for a while to share that love with you. FOR THOSE OF YOU TO WHOM I STILL OWE THANK-YOU NOTES…PLEASE accept this as my written thanks for all the cards, gifts, PRAYERS, bible passages pertinent to my situation which have been written down for me, the great wine, and on and on and on and on!!!!!!!!!!!!!!!! THANK-YOU, THANK-YOU, THANK-YOU!!!!!!!!!!!!!!!!! I am receiving faster than I can reply but I pray every day for you-who are so faithfully praying for me.
Now back to work and play. I just returned from Portland, OR for a business meeting last week and this past weekend, went off to Door County for an annual “long weekend”. This Friday thru Monday it’s east to New York City for kosher corned beef and ‘purse heaven’ in Chinatown. Talk about fatigue! I will be happy to get back to work after all my travels! Seriously, we have hired 2 new employees on the health side and I have a part-time person helping on the disability side of the business. I have committed to slowing down. I cannot keep up with the demands of 10 hour days!! It will be a gradual slow down and our entire company has been so wonderful and understanding. I love the people I work with and my clients of the last 19 years and that’s why I go in everyday. Sometimes I am useless but they let me sit there anyway!!
God is good, all the time! Life is good, all the time!
I will write after my appointment at NWU.
Love to you all,
Lynn
So sorry for my tardiness! I know many of you rely on this blog. Our prayers have been answered for the meantime. Apparently, God listens (we should never be surprised) because we have been directed to Northwestern and a world- renowned lung oncologist, Dr. Jyoti Patel. We were more than a little nervous because we were not sure what options remained for treatment after we were told the cancer has returned in early September, and Froedtert did not think I was a candidate for radiation. I think Dr. Patel saw the somewhat apprehensive look on our faces when she came into the room because before she even introduced herself, she said she wanted us to know that there are a few conventional treatment options available and that is before we even have to look at clinical trials. I appear to be a candidate if we ever have to go that route. There appears to be a number of ongoing trials, one of which is in Madison.
She has prescribed Tarceva, an oral chemo drug, taken daily. The side effects include rash, fatigue, diarrhea (maybe this will take care of some of the weight gain from the last drugs) so I am not complaining! I am very happy to be off those awful steroids which made me feel for a few days like I had “mad-cow” disease. I really feel pretty good on this treatment. Dr. Patel is going to keep a close watch over me scanning me every month (I am so far behind on this I am already due for my scans). The other requirement is that my liver tolerates the treatment. I had the liver function tests which turned out fine and we will go to see Dr. Patel tomorrow, Thursday which will be 4 weeks on my new treatment. If this treatment didn’t work, we will move on to the next one.
I remain optimistic and I am grateful for all of the continued prayers and good thoughts not only for me but for all of my family. I have said this countless times, but words cannot express how thankful I am for all the love and support I have received over these many months. I love you all and plan to be around for a while to share that love with you. FOR THOSE OF YOU TO WHOM I STILL OWE THANK-YOU NOTES…PLEASE accept this as my written thanks for all the cards, gifts, PRAYERS, bible passages pertinent to my situation which have been written down for me, the great wine, and on and on and on and on!!!!!!!!!!!!!!!! THANK-YOU, THANK-YOU, THANK-YOU!!!!!!!!!!!!!!!!! I am receiving faster than I can reply but I pray every day for you-who are so faithfully praying for me.
Now back to work and play. I just returned from Portland, OR for a business meeting last week and this past weekend, went off to Door County for an annual “long weekend”. This Friday thru Monday it’s east to New York City for kosher corned beef and ‘purse heaven’ in Chinatown. Talk about fatigue! I will be happy to get back to work after all my travels! Seriously, we have hired 2 new employees on the health side and I have a part-time person helping on the disability side of the business. I have committed to slowing down. I cannot keep up with the demands of 10 hour days!! It will be a gradual slow down and our entire company has been so wonderful and understanding. I love the people I work with and my clients of the last 19 years and that’s why I go in everyday. Sometimes I am useless but they let me sit there anyway!!
God is good, all the time! Life is good, all the time!
I will write after my appointment at NWU.
Love to you all,
Lynn
Friday, August 28, 2009
Prayer 'Alert Level' Upgraded to Orange
Dearest All,
We are asking you to kick up the prayer level a bit as we have been presented with some additional challenges this week. I had my routine scans and unfortunately, there are a couple of areas that are of a “concern” to my Oncologist. My adrenal gland is enlarged again and this was a gland that was problematic initially. There is also some “shadowing” outside where my lung was removed that was not there previously. These areas were clear nine weeks ago when I was scanned. They are both close to where the original tumor was.
I will be having a PET scan on Monday, 8/31 and the results will be definitive as to whether the cancer has reared its ugly head. We meet with the doctor on Wednesday to get the results. We also have a meeting with a radiation oncologist to discuss radiation options as both of the lesions are small. We have had discussions about going to see Dr. Patel at Northwestern. She is a world renowned lung cancer specialist who is on the cutting edge of clinical trials and treatment. If the current treatment isn’t working, we will need a new cocktail mixed. The good news is that there still appear to be some treatment options. Also it was good to get the news that the cancer is not in my liver or in my brain.
We also will be investigating some new diagnostic options and lung cancer markings which are used to customize treatment being offered at Mass General in Boston.
The good news is I feel great and find it hard to believe that I may not be as healthy as I feel. My hair is filling in really fast and I have ¾ inch alfalfa sprouts all over my head under the long thin hair I have never lost. I have a great deal more energy than before and “feel normal”. My life is good today.
Well, these were not the results we were hoping for as things were returning to some semblance of normal, but we do have options to address this current situation in the event the news is that the cancer has returned.
I cannot thank you all enough for all your love, prayers and support. You all have been incredible especially Patricia B. and Jaki C. who do not let a single week go by since January without dropping a note…adding a prayer or Bible verse. I cherish each and every word from each of you. It is funny because I was getting ready to tell ‘you all’ to knock it off and focus on someone who needs support and ‘save’ my help for when I really need it…and now I am asking for your thoughts and prayers and support as we face these current challenges. Please keep me and all of my family in your prayers.
Love,
Lynn, Tim and family
I will update my blog as we get more information. I know you all want to chat or have me drop a note or e-mail but I just don’t have the time. Just know I love you all and I thank God every day for each of you. I am truly blessed to have all of you in my LIFE.
We are asking you to kick up the prayer level a bit as we have been presented with some additional challenges this week. I had my routine scans and unfortunately, there are a couple of areas that are of a “concern” to my Oncologist. My adrenal gland is enlarged again and this was a gland that was problematic initially. There is also some “shadowing” outside where my lung was removed that was not there previously. These areas were clear nine weeks ago when I was scanned. They are both close to where the original tumor was.
I will be having a PET scan on Monday, 8/31 and the results will be definitive as to whether the cancer has reared its ugly head. We meet with the doctor on Wednesday to get the results. We also have a meeting with a radiation oncologist to discuss radiation options as both of the lesions are small. We have had discussions about going to see Dr. Patel at Northwestern. She is a world renowned lung cancer specialist who is on the cutting edge of clinical trials and treatment. If the current treatment isn’t working, we will need a new cocktail mixed. The good news is that there still appear to be some treatment options. Also it was good to get the news that the cancer is not in my liver or in my brain.
We also will be investigating some new diagnostic options and lung cancer markings which are used to customize treatment being offered at Mass General in Boston.
The good news is I feel great and find it hard to believe that I may not be as healthy as I feel. My hair is filling in really fast and I have ¾ inch alfalfa sprouts all over my head under the long thin hair I have never lost. I have a great deal more energy than before and “feel normal”. My life is good today.
Well, these were not the results we were hoping for as things were returning to some semblance of normal, but we do have options to address this current situation in the event the news is that the cancer has returned.
I cannot thank you all enough for all your love, prayers and support. You all have been incredible especially Patricia B. and Jaki C. who do not let a single week go by since January without dropping a note…adding a prayer or Bible verse. I cherish each and every word from each of you. It is funny because I was getting ready to tell ‘you all’ to knock it off and focus on someone who needs support and ‘save’ my help for when I really need it…and now I am asking for your thoughts and prayers and support as we face these current challenges. Please keep me and all of my family in your prayers.
Love,
Lynn, Tim and family
I will update my blog as we get more information. I know you all want to chat or have me drop a note or e-mail but I just don’t have the time. Just know I love you all and I thank God every day for each of you. I am truly blessed to have all of you in my LIFE.
Sunday, July 5, 2009
Another Milestone
Well, the first 6 rounds of “Big Girl” chemo is finished…thank God! It really was not fun and I’m happy it’s over. Fatigue is my biggest complaint right now, plus substantial hair loss and migraine headaches. That’s the bad news. The good news is that we got the results of the scans and the results were very positive…what I mean is that the scans were clean and there is no evidence of any active cancer right now. They will never say “cancer free” but this is probably as close as I’ll ever get. Dr. Choong and his staff are also pleased and said he does not see these kinds of positive results at my stage very often. He said I am a patient that will make him famous.
I have now started “phase 3” of the treatment (surgery & chemo being phases 1 and 2). Phase 3 is maintenance chemo. Originally the plan was to continue on one of the drugs from my initial chemo that really wasn’t a chemo drug but rather, a targeted agent called Avastin which I understood to have no side effects. But when I arrived for my first maintenance chemo, Dr. Choong said the recent clinical studies showed much greater success with the continuation of another drug, Alimta, which is a chemo drug. While I wasn’t expecting any side effects, I am going to have some-but nothing in comparison to what I have been going through for the first 6 rounds. As long as it is working, it will be ok. The schedule is still every three weeks, but it does not take as long so I call it “Drive- Through” chemo. They will continue to scan me every three treatments (nine weeks) to keep me monitored. If I remain stable, I can receive this treatment for up to two years. I have already had 1 treatment and have another one this Wednesday, July 8th. There continue to be some bumps in the road, but overall things are going pretty well.
We continue to count our blessings and words cannot express the gratitude that I have for such beautiful family and friends. Thank you for your unending prayers, thoughts and inspirational cards…I feel your prayers every day. As you think of me and of my family, please keep in mind all the others who suffer from this and other illnesses. It is almost beyond comprehension the people I know and love who are also suffering.
I will keep you updated but if you do not hear anything for awhile, things are going pretty well. I also try to answer e-mails as I get time. If I do not answer right away, please understand I’ll get to you as soon as possible.
Much love to all,
Lynn
Wednesday, May 27, 2009
LAST CHEMOTHERAPY this Friday!!
It's my last chemotherapy and when I meet with the MD on Friday, I find that I have lots of questions...why no radiation therapy?? Why 2 more years of chemo?? Can I be any more fatigued? So, if you have any questions, let me have them so I can ask the questions that YOU have also!! I will check in after Friday! Lots of love to you and your families. Lynn
Sunday, May 10, 2009
HAPPY MOTHER's DAY
#5 Chemotherapy from last Friday is history!
HAPPY MOTHERS’ DAY TO ALL!! I FEEL GREAT AND HOPE YOU DO ALSO!
I always feel great on that Chemo Friday and usually on Saturday-then by Sunday (BUT NOT TODAY ON MOTHER’s DAY) I start feeling “funky” is the only way to explain it…each day presents some new issue and each day is touch and go. And then by Thursday afternoon, I go back to being and feeling pretty normal and on Friday I am ready to return to life.
I am at the point in my treatment that some symptoms are progressive. My sore mouth, tongue, and throat are really sore. My voice is going quickly. I get frequent headaches. The fatigue is the worst of it from my lowered red cell count. If I am up at 6 a.m., naptime could be at 9, noon, and 3 p.m.-tired all day right now but the fatigue and the migraine frequency should subside after the next, #6, chemotherapy.
And while we are looking forward to the end of THIS cycle of chemotherapy, it looks like I will begin a different “cocktail” regimen of 2 of the same drugs I receive now BUT not the one nasty drug that really gives me all of the side effects so that sounds much more pleasant to me. This maintenance chemotherapy will be given every three weeks and may be given for up to another 2 years—which is the maximum length they can give.
Dr. Choong explained that radiation is not preformed on Stage 4 lung cancers that have metastasized. ABSENT THE MIRACLE FOR WHICH WE HAVE ALL BEEN PRAYING, they do the best they can to keep you living with the cancer and keep it controlled in your body. They will continue to scan me about every 3-4 treatments and I think they try other chemotherapies if it starts to metastasize again. We have again been given some time on the horizon for which we are thankful.
Thanks to all of you for your continues PRAYERS, support, flowers, gifts. Thanks to GOD for taking such good care of me so far, and PRAY that this next round of maintenance chemotherapy brings along with it all peaceful, prayerful, and asymptomatic days.
Trips to Phoenix and Denver were great…but Denver was a bit of work just doing normal activities at the higher altitude. I am glad Dan is coming back!
The rest of the Steinles’ are doing well. Jake loves his sales exec job in Chicago with UNUM. Dan graduated last weekend from Regis University and will be coming back to Milwaukee to teach for one year at MUHS in their Alumni Service Corp program. He will likely teach either Art History or English Literature and HOPES to use his Visual Arts Degree with Photography is some way. He will move back at the beginning of August. They will supply his housing and a stipend for meals…he may need a part time job!!!
Abbey successfully completed her Freshman year at St. Mary’s in Winona, MN…and can’t wait to return…long summer coming!
All kids are coming back for the Memorial Day Parade and it will be a feeling good week for me!! Hope to see you all as the weather warms up.
I continue to be blessed every day of my life because of my wonderful husband who is taking such good care of me every day, and my family and friends!
Love to all of you, Lynn
P.S. I tried to change the settings on this blog so you can leave comments for me...or email to me at above address.
HAPPY MOTHERS’ DAY TO ALL!! I FEEL GREAT AND HOPE YOU DO ALSO!
I always feel great on that Chemo Friday and usually on Saturday-then by Sunday (BUT NOT TODAY ON MOTHER’s DAY) I start feeling “funky” is the only way to explain it…each day presents some new issue and each day is touch and go. And then by Thursday afternoon, I go back to being and feeling pretty normal and on Friday I am ready to return to life.
I am at the point in my treatment that some symptoms are progressive. My sore mouth, tongue, and throat are really sore. My voice is going quickly. I get frequent headaches. The fatigue is the worst of it from my lowered red cell count. If I am up at 6 a.m., naptime could be at 9, noon, and 3 p.m.-tired all day right now but the fatigue and the migraine frequency should subside after the next, #6, chemotherapy.
And while we are looking forward to the end of THIS cycle of chemotherapy, it looks like I will begin a different “cocktail” regimen of 2 of the same drugs I receive now BUT not the one nasty drug that really gives me all of the side effects so that sounds much more pleasant to me. This maintenance chemotherapy will be given every three weeks and may be given for up to another 2 years—which is the maximum length they can give.
Dr. Choong explained that radiation is not preformed on Stage 4 lung cancers that have metastasized. ABSENT THE MIRACLE FOR WHICH WE HAVE ALL BEEN PRAYING, they do the best they can to keep you living with the cancer and keep it controlled in your body. They will continue to scan me about every 3-4 treatments and I think they try other chemotherapies if it starts to metastasize again. We have again been given some time on the horizon for which we are thankful.
Thanks to all of you for your continues PRAYERS, support, flowers, gifts. Thanks to GOD for taking such good care of me so far, and PRAY that this next round of maintenance chemotherapy brings along with it all peaceful, prayerful, and asymptomatic days.
Trips to Phoenix and Denver were great…but Denver was a bit of work just doing normal activities at the higher altitude. I am glad Dan is coming back!
The rest of the Steinles’ are doing well. Jake loves his sales exec job in Chicago with UNUM. Dan graduated last weekend from Regis University and will be coming back to Milwaukee to teach for one year at MUHS in their Alumni Service Corp program. He will likely teach either Art History or English Literature and HOPES to use his Visual Arts Degree with Photography is some way. He will move back at the beginning of August. They will supply his housing and a stipend for meals…he may need a part time job!!!
Abbey successfully completed her Freshman year at St. Mary’s in Winona, MN…and can’t wait to return…long summer coming!
All kids are coming back for the Memorial Day Parade and it will be a feeling good week for me!! Hope to see you all as the weather warms up.
I continue to be blessed every day of my life because of my wonderful husband who is taking such good care of me every day, and my family and friends!
Love to all of you, Lynn
P.S. I tried to change the settings on this blog so you can leave comments for me...or email to me at above address.
Monday, April 13, 2009
ALLELUIA !!! Some long-awaited GOOD news!!!
I had my brain MRI and CT scan of the rest of my organs on Good Friday as planned. We expected results this Friday but got the call today with the GREAT results. The brain MRI was clear!!! The CT scans showed that the chemo is working. The spot on my liver is gone!! The shadows around my adrenal gland and other “watch” areas are all gone!! The one cancer remaining is in that lymph node in my chest area which they could not remove because of the entwinement with an organ (my heart, I think). That lymph node should shrink with the chemo and I still do not know if I am a candidate for any radiation. I will ask that question on Friday when we see the Dr. before my next chemo treatment #4.
It’s such a great news day today! I hoped and prayed every day for this good news and thought it would be good because other than those 5-6 funky days (as I call them) after chemo, I am feeling so good…still fatigued, a few aches and pains, but otherwise, really good for where I am in this process.
My friend Jaki, shared one of her favorite verses with me and I will share it with you, “For I know the plans I have for you, declares the Lord,…plans to give you hope and a future…You will seek Me and find Me when you seek Me with all your heart”. Jeremiah 29:11,13 Thanks, Jaki!! Spring HAS refreshed my spirit with new hope and new strength.
It looks like future travel plans for my national SEBS meeting in Scottsdale, and Danny’s graduation from Regis University in May are a GO!
All I can continue to do is to say thanks to everyone for helping me through this very difficult journey. Even if we don't speak, I benefit from your prayers, cards, gifts, good wishes and positive thoughts. I continue to be blessed every day of my life because of my friends!
Love, Lynn
P.S. I tried to change the settings on this blog so you can leave comments for me...or email to me at above address.
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