Friday, October 20, 2017

An uncertain scan

Jen’s latest scan is a little ambiguous.  Her doctor at UCLA believes that there is a slight growth happening in the recently expanded area.  This was not a definitive call.  In fact, the radiology report reads as stable.  Her doctor showed us an area of the tumor that looks as if it is growing in a new direction.  We were both able to see what he did, but again it is slight.  He expects that the next scan will most likely show it to be bigger yet again.  He did tell us that it is possible that what we are seeing is remodeling of the tumor.  It is also possible that the next scan will be stable – there is a lot of uncertainty with these things and again MRIs are not an exact representation of what is going on.

Even if Jen wanted to pursue a clinical at this stage, she probably would be ineligible as growth from this scan would be a debatable thing.  Jen will resume the chemo on Tuesday night.  If there is indeed growth, the chemo is working somewhat or the growth would be more pronounced.  If the next scan is more indicative of growth, than we will need to change course.  In the meantime we will keep plugging away at potential clinical trials so that if that happens we can hopefully be ready with a few options.

Obviously this is not the best news, but it is also not the worst.  Hopefully, the next scan will be more positive and this scan will turn out to just be an imprecise picture of what may be going on.

We are still waiting on the results from the FMRI that Jen had done 10 days ago.

As to Jen’s decrease in balance and increased fatigue, her UCLA doctor does not believe that her symptoms would be from any new growth as it is so minimal if it does exist.  He also believes it is unlikely that these would be delayed deficits from the earlier growth.  He feels that it is most likely from Jen’s allergies and the various remedies that she pursued for relief.  Jen has been off of any allergy medicine for about 4 days now and I would say that there has been an improvement.

I will keep you posted as we learn more.  As always thank you for the continued support and please keep Jen in you hearts and prayers.

Wednesday, October 18, 2017

Another Update

Well it has been another busy month.  Jen completed her second round of chemo and has since recovered from that, but she was sick briefly and has had a real problem with her allergies for the last several weeks.  We have now tried 4 different types of allergy medicines for Jen and they either didn't work or had really bad side effects for her.  Jen has had a rough couple of weeks.  She fell 4 times in the span of a week and a half and generally has been more tired and a little more confused at times.  Her doctor at Cedars told us that it could be delayed deficits due to the growth that Jen had before her last stable scan.  It could also be a sign of continued growth, or he also felt that it could very likely be the result of her being sick and her allergies flaring up as well as the allergy meds that she has been taking.  We will know more this week.  Jen's next scan is this Thursday.  Jen also had an FMRI which we should get the results of on Thursday as well.  An FMRI (Functional MRI) is done to see if surgery is even a possibility for Jen.
My parents visited with us for 9 days during the end of September.  They were literally on the plane in the air headed to see us when we got the results of Jen's last scan.  We had debated whether or not to postpone their visit due to the timing, but Jen felt that she wanted to visit with them regardless of the scan results. Jen has known my parents for 30 years now and Jen considers them family.  Fortunately, the scan news was good and we had a very pleasant visit along with a huge sigh of relief.
We seem to again have endless medical appointments - something that had lessened while Jen was stable and off chemo.  A lot of second and third opinions as well as blood draws and explorations for clinical trials.  Jen has also been working with an orthotics company trying to get fitted for a device to help control her right knee which has become prone to hyper extension.  This is a problem that she has always had to a small degree, but one that has gotten worse in recent months.
Please continue to send all the positive love and support as we hope for good news this Thursday.  I will keep you updated.
Now for some pictures.
My parents

Enjoying a day with my parents.
We also managed to see a couple of shows.
At the Gorillaz show

Catching the spotlight as it washes over the audience
At the Wiltern with Kathy, Lisa, & Earl

On stage at the Wiltern - Joan Baez, Patty Griffin, Steve Earl, Lucinda Williams,
Brandi Carlile & more