The latest ...

Mom had some lovely sand therapy!  Fabulous idea!!

Sorry I haven't posted in awhile.  Mom's days are fairly uncomfortable, lots of nausea, fatigue and weakness.  Thankfully, not too much pain.  She had both lungs drained again today and, again, over 2 liters of fluid removed.  Unbelievable.  She's having a drain put in this afternoon so she can drain that fluid at home.  She has been on oxygen 24/7 and we're hoping this helps with that.  The palliative nurse is working on some different things to try to better control the nausea.  Mom has been able to take nearly all of the supplemental/Rx protocol.  We'll see ...

Thanks for all the love!
Maggie

brief ...

We had a really nice brunch this morning at Mom & Paul's!  Paul, all five of us "kiddos", four significant others & the four grandkids surrounded Mom and expressed our gratitude for different things related to our family.  Lots of tears fell and funny stories followed.  Thank you Ben for organizing!

 

Mom is very weak & unable to eat much.  She is able to breathe with much more ease, due to having both lungs drained of 2 1/2 liters of fluid.  Yikes.  She is taking all of the pills that are part of this protocol but unfortunately she is experiencing a fair amount of nausea. 

 

She is resting & watching a little football this afternoon.

 

Love to all,

Maggie

brief update ...

Unfortunately, Mom had an extremely nauseous evening, perhaps the new prescriptions, followed by a difficult morning breathing.  She just had her right lung drained and they got 1300 cc (1.3 liters) out of it.  Unbelievable!  Hopefully she'll feel some relief.

Eric, Jess, Matt & Erin are all driving down, from Jackson & Ft. Collins respectively, for the weekend.  So, we'll have some family time!

Love,
Maggie

update from Ellen ...

Thank you Ellen!!!!!!!!



Hi friends,

Well, I just talked with Paul and Nyshie, who called from the hospital.  As you know, she has felt horrible for the last week or two, barely wanting to get out of bed, having trouble breathing and talking.  Apparently she has been on oxygen since her time in the hospital last weekend and has felt like she was suffocating.  It was at the point she told me last night she didn't think she would last the week.

Fast forward to this morning...Nysh had an early appointment to have fluid drained from one of her lungs this morning.  She just called and is like a new woman!  The Nyshie we know and love is back and as chatty as ever.  You know she feels better when she starts talking football. The reason is they just drained 1.2 liters of fluid from one lung, a HUGE amount.  She is having the other lung done tomorrow morning and the expectation is the same amount will be drained.  She is now actually able to breathe and feels so much better.  The procedure is minimally invasive:  just a local and needle/tube to drain the fluid.

The visit with the doctor in Boulder went fine.  The doc gave her the prescriptions, which are being filled here.  In terms of hope for the 4 pronged medicinal attack, the doctor said it might be a bit late but take the meds and hope for a miracle.  As Paul said, if anyone can pull off another miracle, it is Nyshie.

As you might imagine, Nyshie wants me to convey her apologies for being out of touch and not calling/talking to people for the past few weeks. ( I know...REALLY????)  I am sure we think she has a pretty good excuse for her antisocial behavior.

Please keep sending love, prayers, healing energy and the kitchen sink to Nyshie, Paul, Maggie and Ben as they continue to travel this path.  The journey is lonely but not alone...we are all right there with them.

Love to all,
Ellen

update ...

Thank you goddess Ellen for typing up!!

First the good news:  The woman, Rebecca, who is the contact for the experimental treatment Nyshie is going to try, is very positive she can help her.  There is a woman physician in Boulder who will prescribe the drugs and they are meeting with her tomorrow at 3:15. By luck or Providence, she had a cancellation for tomorrow and does not have another opening until December.  This doctor cured herself of breast cancer using this experimental stuff and has also cured a former colleague of Paul's.  Both were in the very late stages of cancer. Dr. Pikkart, Nyshie's oncologist, cannot prescribe this stuff due to the experimental nature and his association with the hospital but reviewed the science and is very supportive.

Here is the treatment, in a nutshell:  There are 4 processes that encourage tumor growth: blood supply, nutrition (sugar mainly), compromised immune system and something to do with metabolism.  Most conventional cancer treatments attack only one of these at a time.  This experimental treatment attacks all 4 at the same time using 7 medications.  They will find out more details tomorrow.

Now for the bad news:  Nysh's CA-125 went up 600+ points and is now at 2,649.  Her lungs and abdomen are filling with fluid again so that will have to be drained with a needle, which may be a recurring procedure.  Many of you know Nyshie has chosen to stop chemo so she can function better for the time she has left. If the experimental drugs start to work, she will buy herself more time.  If not, she has about a month left ...

brief update ...

Mom was discharged today.  The fever appears to have been a result of a UTI, thankfully nothing else.  She looks much better and it was fabulous to hear her laugh!  Unfortunately, she is still having discomfort and pain due to the distended abdomen.  She'll check in with her oncologist on Monday.


Thanks for all the love & support!!
Maggie

more from Maggie ...

Sorry, long day ...

Mom was up last night vomiting & could barely walk to the car.  Paul took her to her oncologist's office this a.m. and they admitted her to the oncology floor.  Her doc came in and the discussion was ... rough.  Chemo & surgery are out.  So, the question was did she want to run a bunch of tests and treat or turn things over to hospice & manage pain.  She opted for an 11th floor enema, which worked.  They then sent her down for an x-ray and she does not have a bowel block, which is what we had thought.  Good news, relatively speaking. She is running a fever (concern that a tumor might have perforated her bowel???), they started her on antibiotics and she is getting a few other things.  Also, she started drinking clear liquids and, so far so good on that front.  

She'll most likely spend the night and go home tomorrow.

I'll update later.

Love,
M

from Maggie ...

I just spoke with Janet (Paul's sister) and she is at the hospital with Mom.  She woke early this a.m. with that nasty epigastric/side pain and it came and went all day and then got really severe a little while ago.  I assume they'll run a bunch of tests.  They never have been able to figure out this pain.  Hopefully, they can ease it.


I'll update when I know anything.

Love,
Maggie

update ...

Second verse, same as the first ...

To put it simply, I’ve had the week from hell following the chemo infusion last Thursday.  Nausea, muscle weakness and fatigue are the worst symptoms. Hopefully, I’ll turn the corner tomorrow.

I was scheduled to get another chemo infusion today but, after lots of discussions and soul searching, I decided not to do the chemo.  In fact, I am closing the door on chemo for now as a treatment option. The high level THC has not been tolerable for me, so that’s not an option either.

Thanks to our good friend, Jodi Taylor, we are exploring a little known protocol that is having some success with “end-stage” cancer.  It involves taking about 20 pills a day, which focus on 4 processes that are necessary for the survival of the cancer cell. We just found out about this yesterday.  I’ll provide more info when we have it.

“A friend is someone who knows the song in your heart, and can sing it back to you when you have forgotten the words.” 

                                                                                       Unknown

Love you all,

Nyshie

from Mom ...

Are you all getting as tired of this as I am?

We saw the oncologist on Tuesday afternoon.  MyCA125 has increased again from 1,622 to 2,049.  Because we have such limited options left, he really wants to keep me on the same chemo regimen for another 2 infusions, today and next Thursday.  There is a chance that I haven’t taken enough of it yet for it to be effective.  We’re not overly optimistic but willing to give it a try.  I’ll have my tumor marker checked again in 3 weeks.  If it hasn't improved we’ll switch to something else.

Otherwise, I have finally been feeling much better as I recover from my surgery.  Much less pain during the day, it just usually hits me in the late afternoon/evening.  Tuesday morning, Paul and I took my sister Liz, Lil' Nyshie, Shane, Hang, Maggie and baby Nyshie out on our boat to Pueblo reservoir.  I was the first one to dive into the cold water and swim a little. I actually felt normal (relatively speaking) for the first time in a long time.  I did not use the THC while they were here visiting as it really knocks me out. 

We just found out about a physician and dispensary in Denver who are doing a lot of ongoing work with Cancer patients using THC.  We plan to visit there next week to obtain additional information about all of this.  Our other news is that Ben is moving back to the Springs from Massachusetts and should arrive on Friday.  He has been such an incredible care giver for me and will be a huge support for Paul, Maggie, Beth, Matt and Eric.

We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.                                                                                                                              Joseph Campbell

I wish I had the time and energy to tell each and every one of you how much your love and support has meant to me.  It’s been an increasingly long and difficult haul, I couldn't continue to get through it without you all.

Big Giant Grandma Nysh