Journaling Gaye

October 28, 2022 Gaye has completed her third round of oral chemo, had another MRI and blood draw - all this week.  The news is much more encouraging from these test.  Apparently her tumors shrunk some (definitely did not grow!) and the midline of her brain is back central again (i.e. the swelling has gone done).  She is feeling good ("normal" as she says) and not experiencing the foot fall and left hand issues at this time.  This is all good news. For those of you who are more technical, her tumor cells are methylated and the Temodar chemo works well on this type of cancer cell.  She will continue with this maintenance schedule for now -  1 week of chemo with 3 weeks off.  The tumor team is closely monitoring her platelets which are a bit low.  This is common with this kind of treatment and they will decrease the level of Temodar to try to increase those platelet levels.  (Platelets are important for clotting and bruising and bleeding could ...

 September 30, 2022 This has been an up and down and eventful week.  Gaye was feeling "off" in that her footfall was awkward and her left hand was not grasping well.  Phil (Lynne's brother-in-law who is a retired radiologist who read Gaye's MRI) noticed that there was quite a bit of swelling in her brain from the secondary tumors which was causing shifting in her brain and suggested we talk to her oncologist about taking something to reduce the swelling.  Upon talking with her oncologist he agreed that this could help and might relieve some of her symptoms and put her on a steriod.  His hesitation was that with steriods there are concerns because they can and do cause unfavorable side affects (interfere with sleep patterns, large increases in eating urges to name a few and there was no guarantee that this would relieve her symptoms).  So Gaye began steroids' on Sunday (one Sunday night and then 3 for the following day).  The oncologist checked in with ...

  September 23, 2022 Gaye had both a blood test and MRI done this week and then a discussion with her oncologist.   The news was disheartening, as she already suspected, since she was starting to have symptoms that were not normal for her.   She noticed that her balance (footfalls) and coordination (hand grasping and poor response to command) were different.   Cognitively she is good.   The oncologist shared that while the surgically removed tumor had not grown considerably, the two smaller tumors had.    These are located in another part of her brain and explain the different symptom she is experiencing this time.   Basically, the radiation and chemo were not slowing the growth of these tumors.   So, she will discontinue the current chemo regimen.   Apparently these two tumors are not operable either. There are possible studies/clinicals at UCLA that might apply to Gaye’s tumor and so her oncologist will send the researchers Gaye’s ...

 September 3, 2022 Well, Gaye has completed one week of the higher dose of her chemo maintenance treatment and done well.  She had no stomach issues (no nausea) and sleeping went well.  Eating and energy are good as well.  Feeling positive about where she is right now.  In fact, we (Bob, Lynne and Gaye) have decided to book a Fall Foliage cruise from Montreal to New York - an 11 day river cruise (October 11-21) with hopefully lots of beautiful fall colors.  We figured if we kept it more local (not international, as in not off the continent that is) that this was doable.  And of course cruising makes it so simple.  We are excited and were able to get some last minute rooms on Oceania.  This will be between chemo treatments so picking the best possible timing we hope. Gaye's main sadness is her hair right now, so we went and got her "hair done".  Think she is going to be pleased with the results.  Tried a lot of styles but this one re...

  August 30, 2022 Gaye did great last night with her first full dose of chemo pills.  She slept through the night and even slept for about 9 hours.  Woke up feeling good and still feeling good midday.  We walked to the market this morning and she suggested that we walk to the bank now.  Says that she is still feeling fine.  So off to a great start so far.  And her appetite is good too.    She sure is making my "job" easy!!!.   All for now. Beautiful bouquet from a friend's garden given to Gaye.

 August 25, 2022 Quick update.... Called Gaye yesterday.   Asked how she felt. "Just the same as normal", she says.  After talking with her I would have to agree.  Good spirits. Clear thinking.  No pauses in her conversation.   She's feeling a bit uncertain about next week's treatment (as in how she will do).  So am I, so I will be returning to Santa Barbara to be a helper if needed.. Since she is taking the chemo orally (higher dose than before) at night, I am planning on arriving sometime Monday (8/29) during the day. She is tasked with taking the chemo for Monday through Friday and then having the next 3 weeks "off".  I'll stay the week or longer as needed.  I'll write up something in the blog on Tuesday to let you all know how that goes. Boring myself watching the Padres tank. Yes, Jimmy (and all you other Dodger fans), I am admitting it.  So much hype and no results. Ugh! Doubly disappointing.   Hot down here in San D...

 August 11, 2022 A puzzle full of slaps (as Jimmy calls these sandals.  Many hands went into finishing this puzzle) I headed home for a couple of weeks as Gaye's next treatment will start on Monday, August 29th.  She is doing well and this will give her a break from me!  She can finish puzzles all on her own for a while - however, we will both confess that some of them took our teamwork to complete...wow,  some jigsaw puzzles can be so different and difficult! The next phase of her treatment will consist of 5 days of chemo pills taken before bedtime (Monday through Friday).  She is actually scheduled to do this every 4 weeks...one week of chemo with 3 weeks "off".  This treatment will actually be twice the dose that she was taking during the radiation treatment.  Her oncologist actually called this maintenance treatment and as long as she does well (tumor regrowth is not happening) this will continue. The plan to assess her progress, other than he...

August 8, 2022 - Monday Gaye spoke with her medical oncologist today.  He is a gentle  and philosophically positive person and is guiding her to use her time wisely - you know, doing things that spark joy- the end time is not predictable.  It was good to speak with him.  The next phase for Gaye will be what he is calling a "maintenance" dose of chemotherapy.  It will be much higher than what she was taking with the radiation (about 2Xs higher) and she will take it for 5 days each month.  Her blood will be drawn monthly and MRI's will be taken every two months.  As long as they do not see tumor growth this will be the course of action.  Her first chemo week will be the week of August 29th. The issue of clinical trials or experimental drugs was discussed after we brought it up.  He mentioned that what Gaye is receiving is the standard of care for now and they have found it has the best results.  However, having said that, he did mention th...

 Friday, August 5, 2022 Today was Gaye's last radiation/chemo treatment at the Ridley Tree Cancer Center (RTCC).  They were cute and gave her a Certificate of Graduation and threw some confetti upon her.  Her "adorable" hat snagged some of the confetti and brought it home. While this does seem like a time to rejoice, having this part of the treatment over and progressing through it fairly easily, she is starting to notice hair losses.  The RTCC said it could be from the radiation as well as the chemo.  However, looking forward to more chemo has us feeling that this hair loss will continue.  The Ridley Tree Cancer Center does offer a service with free wigs and hats etc so we have a call to them to see if we can take advantage of this offer.  Waiting for a call back. We go into the weekend with no more radiation and no chemo for now.  She has a teledoc meeting with the medical oncologist on Monday for further instructions on her care.  For now ...

Although this is my (Lynne Lesh) first entry into this blog journaling Gaye's story, it begins some time back....on May 19th, 2022, while she was at work helping with monthly reports for Peter and Dan -  she had worked with Paragon Mortgage for over 30 years. They both noticed that something was not quite right with Gaye.  Peter said, "I am not going to stop bugging you because something is not right with you".   At this time, Gaye agreed that she was not feeling quite right - Peter and Dan noticed confusion and struggles with communication skills (mostly yes - no responses to all their conversations).  True to his word, both he and Dan tried to contact family that evening.... Dan to Lynne - who was already on a plane heading to a British Isles Cruise for 11 days and then Peter to Gaye's younger brother Jimmy via Peter's father, Paul.  Jimmy and Paul have become biking buddies and what a blessing that was for us that this communication line worked.  Pa...