Dear friends,
Our mother's memorial service will be on Saturday, April 21, 2012 at 5pm at Wedgwood Presbyterian Church in Seattle (8008 35th Ave NE). Please feel more than welcome to join us as we remember such a beautiful, courageous, intelligent and loving woman. And know that even if the distances prove to great, we know that you will very much be with us spirit. Your love and support during this time have been invaluable, and such a source of strength for us all. In lieu of flowers, memorials may be made to mom's beloved alma mater, Macalester College.
Monday, April 16, 2012
Saturday, April 14, 2012
The Grey Havens
Our brave, beautiful mother passed quietly in to her next adventure early this morning while surrounded by her loving family. She was sleeping comfortably, and was not in any pain. We are in awe of her fighting spirit, her courage, and the greatness of her love. One of her final requests was for everyone to know that she considered her friends to be her greatest riches, and that she considered herself wealthy beyond compare. We love her, and miss her deeply. Thank you so much for all of your kind words, love, and support during this difficult time. She was truly an amazing and inspiring woman, and our world was a better place for knowing her.
With love,
Matthew, Seth, and Sarah
With love,
Matthew, Seth, and Sarah
Thursday, April 12, 2012
Sleeping
Hello dear friends,
My mother is comfortably sleeping right now, as she has been for the past few days. Each day, she is a little more tired, and a little weaker. Her blog post yesterday will likely be one of the last she makes, but I will continue to give you updates as I know many of you are interested in how she is doing. I want to thank you all for your love and support in the form of visits, phone calls, texts, blog comments, and warm thoughts and prayers. They truly mean the world to my mother, my brothers, and me. We are blessed to have such loving friends and family.
Sarah
My mother is comfortably sleeping right now, as she has been for the past few days. Each day, she is a little more tired, and a little weaker. Her blog post yesterday will likely be one of the last she makes, but I will continue to give you updates as I know many of you are interested in how she is doing. I want to thank you all for your love and support in the form of visits, phone calls, texts, blog comments, and warm thoughts and prayers. They truly mean the world to my mother, my brothers, and me. We are blessed to have such loving friends and family.
Sarah
Wednesday, April 11, 2012
Update
It's been a few quiet weeks, so I thought I would let you know how things are going.
Not so good. We have finally settled on a good pain cocktail combination. Which means I will always be looking for a designated driver. MS Contin and short acting morphine. I was expecting something like this:
Instead, the pleasant operation of pain medications is more like this:
So I am pleased to be able to walk and sit and talk without being overwhelmed with pain. Wishing you all pain free evenings tonight.
Not so good. We have finally settled on a good pain cocktail combination. Which means I will always be looking for a designated driver. MS Contin and short acting morphine. I was expecting something like this:
Instead, the pleasant operation of pain medications is more like this:
Wednesday, April 04, 2012
Leptomeningeal cancer
Well, it looks like things are worse than originally thought. Although it did not show up on the MRI (generally just big things show up), it appears that I have a 'dusting of cancer cells at the base of my spine on the cauda equina, where all the nerve endings that deal with the legs come out.
And, it appears, based upon observational symptoms alone, that the cancer has invaded my cerebrospinal fluid. This is a very difficult thing to treat because chemotherapy to the CSF would have a significant impact on my quality of life. So no more chemo, but I am receiving 5 rounds of radiation in the saddle back area to try to relieve symptoms such as pain. I now wear a pain patch and use additional pain drugs when there is break through pain. Wish I had better news.
And, it appears, based upon observational symptoms alone, that the cancer has invaded my cerebrospinal fluid. This is a very difficult thing to treat because chemotherapy to the CSF would have a significant impact on my quality of life. So no more chemo, but I am receiving 5 rounds of radiation in the saddle back area to try to relieve symptoms such as pain. I now wear a pain patch and use additional pain drugs when there is break through pain. Wish I had better news.
Sunday, April 01, 2012
Arachnoiditis
Fort Lauderdale was wonderful. Weather, friends, food, doggies. But the seven hours sitting each way on the plane seems to have caused some problems. In FL I found I was having trouble not only with neuropathy on the soles of my feet but numbness and pain continued to expand down from my butt through the backs of my legs. When I returned to Seattle, the pain was even worse, so I spent Wednesday at the University of Washington's ER having an MRI done of my lower spine. Then Friday I went back for an MRI of the upper spine.
The good news is that the disk bulging (which include all the lumbar disks) is not caused by tumor growth pressing on the lumbar spine. The bad news is that they don't know what causes it and it is extremely rare.
Here is the preliminary MRI report and the final MRI report, which differ significantly:
PRELIMINARY REPORT BY THE NEURORADIOLOGY FELLOW - FINAL REPORT TO FOLLOW:
MRI LUMBAR SPINE WITHOUT AND WITH CONTRAST, 3/28/2012.
INDICATION: Cauda equina symptoms with NSCLC.
TECHNIQUE: Sagittal T1, T2, STIR. Axial T1, T2. Postcontrast sagittal and axial T1.
COMPARISON: CT chest, abdomen and pelvis, 10/17/2011. Lumbar spine, 2 views, 3/28/2012.
FINDINGS:
Mild (grade 1) anterolisthesis of L5 on S1. Bone marrow signal is normal. No evidence of acute fracture or focal bony lesion.
No abnormal enhancement within the spine or cord. No epidural mass. Paravertebral soft tissues are normal.
Conus ends at L1 and the conus and nerve roots are normal in appearance.
Multilevel disc dessication. L1-L2 diffuse disc bulge with superimposed left lateral recess / far lateral disc protrusion resulting in
mild narrowing of the left lateral recess and neural foramen. Diffuse L2-L3 disc bulge resulting in mild narrowing of the left neural foramen.
Diffuse L3-L4 disc bulge resulting in mild bilateral neural foraminal narrowing. Diffuse L4-L5 disc bulge resulting in mild right neural foraminal narrowing.
Diffuse L5-S1 disc bulge without significant cental canal or neural foraminal narrowing. Multilevel ligamentum flavum and bilateral facet DJD.
Large cystic structure in the pelvis is incompletely visualized and better demonstrated on prior CT.
IMPRESSION:
No evidence of metastatic disease to the lumbar spine or cord compression.
This is a preliminary report by DG.
_____________________________________________________________________________________________________
FINAL REPORT:
Final Findings:
The final report differs from the preliminary report, as discussed below. Findings were conveyed by Dr G to Dr S at time of final dictation.
No central canal stenosis is seen at any level. No paraspinal or epidural mass is seen. The intrathecal and exiting nerve roots from L3-S1 are slightly enlarged in caliber and demonstrate clumping, as well as abnormal enhancement. Findings are consistent with arachnoiditis. No other abnormal enhancement is seen.
Final Impression:
1. No paraspinal/epidural mass or central canal stenosis at any level.
2. Findings consistent with arachnoiditis in the lower lumbar spine.
3. Multilevel degenerative changes of the lumbar spine, as described.
So there we have it. I will go in this week for a lumbar puncture to see if the spinal fluid can reveal any hints as to what is going on. I am the proud possessor of a 4 prong cane. I guess the one Jay gave me in college for shin splints won't do the trick anymore. It's really hard to sit, so I am lounging a lot, rather like Madame Recamier, only not so gracefully or in such nice clothes:
The good news is that the disk bulging (which include all the lumbar disks) is not caused by tumor growth pressing on the lumbar spine. The bad news is that they don't know what causes it and it is extremely rare.
Here is the preliminary MRI report and the final MRI report, which differ significantly:
PRELIMINARY REPORT BY THE NEURORADIOLOGY FELLOW - FINAL REPORT TO FOLLOW:
MRI LUMBAR SPINE WITHOUT AND WITH CONTRAST, 3/28/2012.
INDICATION: Cauda equina symptoms with NSCLC.
TECHNIQUE: Sagittal T1, T2, STIR. Axial T1, T2. Postcontrast sagittal and axial T1.
COMPARISON: CT chest, abdomen and pelvis, 10/17/2011. Lumbar spine, 2 views, 3/28/2012.
FINDINGS:
Mild (grade 1) anterolisthesis of L5 on S1. Bone marrow signal is normal. No evidence of acute fracture or focal bony lesion.
No abnormal enhancement within the spine or cord. No epidural mass. Paravertebral soft tissues are normal.
Conus ends at L1 and the conus and nerve roots are normal in appearance.
Multilevel disc dessication. L1-L2 diffuse disc bulge with superimposed left lateral recess / far lateral disc protrusion resulting in
mild narrowing of the left lateral recess and neural foramen. Diffuse L2-L3 disc bulge resulting in mild narrowing of the left neural foramen.
Diffuse L3-L4 disc bulge resulting in mild bilateral neural foraminal narrowing. Diffuse L4-L5 disc bulge resulting in mild right neural foraminal narrowing.
Diffuse L5-S1 disc bulge without significant cental canal or neural foraminal narrowing. Multilevel ligamentum flavum and bilateral facet DJD.
Large cystic structure in the pelvis is incompletely visualized and better demonstrated on prior CT.
IMPRESSION:
No evidence of metastatic disease to the lumbar spine or cord compression.
This is a preliminary report by DG.
_____________________________________________________________________________________________________
FINAL REPORT:
Final Findings:
The final report differs from the preliminary report, as discussed below. Findings were conveyed by Dr G to Dr S at time of final dictation.
No central canal stenosis is seen at any level. No paraspinal or epidural mass is seen. The intrathecal and exiting nerve roots from L3-S1 are slightly enlarged in caliber and demonstrate clumping, as well as abnormal enhancement. Findings are consistent with arachnoiditis. No other abnormal enhancement is seen.
Final Impression:
1. No paraspinal/epidural mass or central canal stenosis at any level.
2. Findings consistent with arachnoiditis in the lower lumbar spine.
3. Multilevel degenerative changes of the lumbar spine, as described.
So there we have it. I will go in this week for a lumbar puncture to see if the spinal fluid can reveal any hints as to what is going on. I am the proud possessor of a 4 prong cane. I guess the one Jay gave me in college for shin splints won't do the trick anymore. It's really hard to sit, so I am lounging a lot, rather like Madame Recamier, only not so gracefully or in such nice clothes:
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