21 February 2018

There's been no updates because things have been so incredibly complex and there was no reliable information to share until now.  It changed almost daily.

She’s comin’ home.  My honey bunny has been out west basically since October taking care of her daughter Jennifer, who is dealing with advanced invasive melanoma.  She’s been back twice in between, I think, not really sure anymore.  Once was for a couple of weeks and the other was for 4 days, IIRC.  The last trip started in early December when we got the message that Jennifer is gravely ill with tumors in her brain and the frontal lobe to be precise that if not dealt with immediately, would simply kill her.

The first trip out was when J was initially hospitalized because her blood sugar was averaging 500 and all attention to her cancer stopped dead in their tracks.  Shortly before this, she just had undergone the Gamma Knife to deal with 6 or so lesions in her brain and that knocked the snot out of her all by itself.  As mentioned in my last post, I think ...

There were simply too many 3^rd world medical malpractice assaults on Jennifer to mention that happened to her that led to her brain surgery in the once Golden State of California.  Filthy understaffed hospitals, incompetent doctors, an unnecessary surgery that opened her stomach without a second opinion or review and well meaning but uninformed caregivers who reinforced the old axiom of the road to hell is paved with good intentions.  These caregivers, J’s father and an exgirlfriend of his who claimed to know all about cancer because she took friends to the doctors offices for treatments, etc. almost killed her with their personal biases when J became unable to eat anything, let alone keep it down.  They kept saying that she doesn’t want to eat, its just her stubborn nature.  Fortunately, Patty was there and  realized that J could not eat and pushed and pushed to get her scoped where they found that the bottom of her esophagus was almost closed due to a growth.  As a last ditch effort, they put in a stint to open it up and keep it open.  J had not eaten for almost two months and was living on IV nourishment, headed towards a feeding tube.  Organs were beginning to shut down.  Now she is eating whole food again since the stint was put in.  So with that accomplished Patty came home, and was here for only 4 days when we got the call.

When Patty went back out in December our only hope was that she would get there before her brain surgery to at least say hi to her daughter before she underwent the brain surgery that she was likely not to survive.  Things happened that fast.  We were in need of a Christmas miracle.  It now appears that we got that.  As it turns out there was only one doctor available in SoCal, Dr Mark Linskey, that would even touch her and he basically dropped what he was doing and took her on after the UCI neurology department review of her case.  While he was in, he found additional lesions and took them out as well.  She made it through but lost the use of her left side of her body and the neurosurgeon said that it was unlikely that she would regain the use of her left arm and leg anytime soon, if at all.  An occupational therapy program was figured out and Patty being at J’s bedside kept on doing all the exercises in between the daily hour long or so visits and J has regained limited functions and is even able to walk again and hold things with her hand.  She can’t raise her arm but if raised she can hold it up in place and some autonomic reflexes are working now. 

Sidebar. We now know that the brain is capable of rewiring itself or rerouting pathways to overcome areas that are no longer functioning properly and I am convinced that because Patty was there working constantly to keep Jennifer moving and exercising between these visits, it enabled the brain to do a much better job of repairing itself than if there were much more limited exercises that only happened during the brief daily therapy sessions.  I don’t know that for sure, but we will find out about that when P gets back and sees her own neurosurgeon for follow up on her own back surgery.    Because P was out there for as long as it takes, she had to call her neuro doc here and cancel a standing appointment.  Evidently she was on speaker phone and her doc just happened to be nearby during the call and when P mentioned Linskey by name her doc turned his head so to speak and said that he has heard of him and reassured her that he is about as good as it gets.

Fast forward, Linskey referred us to an oncologist, a Dr John Fruehauf, that would be able to treat J’s melanoma with state of the art care and therapy.  It turns out that our new guy knows the doctor who did J’s initial treatment and more or less spit after saying his name.  He said that there is no way in hell that J should have had chemo with her type of melanoma in the first place.  He damn near killed her.  None of the chemo used could get past the blood – brain barrier for openers.  It was the friend who claimed to know everything about cancer who said that he was “the guy” to go to for J’s treatment.  Our new oncologist did say that there is woefully little real and knowledgeable  treatment available in SoCal for melanoma, which is ironic considering the prevalence of it due to the amount of people who have it due to being in the sun so much out there.  And yes, J did the tanning bed thing and it has been determined that the use likely contributed to her melanoma.

He said that her treatment was so effed up that he would do a new PET and restage her when we got the results, which we finally got yesterday.  Much has changed, it seems to be gone from inside her brain.  He flat out said that she would have died without the brain surgery.   He won’t give her a formal stage at this point, too early.  There is still some scattered about and more new has returned to her leg which was where it all apparently started, but there is nothing life threatening at the moment.  She’s not out of the woods at all, but he is hopeful that the immunotherapy he will use should be very helpful and keep it at bay.   Can’t ask for anything more after all the stuff she went through to date.  So with all of that and much more resolution, my baby is finally coming home a week from today.  Her 2^nd ex bought her ticket for us.  Family and friends have helped out so much to allow P to make 3 round trips and spend 5 months out there.  And thanks to the peeps here who pitched in at Jennifer's fundraiser page.

I can now think of exhaling and actually know that Patty will be home soon, comfortable with the care that Jennifer is finally receiving.  P is plugged in and all news will go to her directly from the doctors, without having to rely on the ones who dropped so many balls.  She has made it clear that no one better fuck things up anymore or she will be back out there on her broom and kicking asses before asking questions.  But I can’t rest yet.  There has been no one here but me and kitteh for the past 3 months and it does look like it, too.  I gots plenty o cleaning to do so she stays when she gets back.  That and I have to battle an ice storm in the morning to go to my onc for a periodic check up, regular shot and a phlebotomy to drain some blood to dilute my red counts.  I no longer get a bag of saline to rehydrate myself afterwards because my veins are so shot.  You can take stuff out, but nothing going back in cuz I now leak too easily  internally.  Oh well, oh hell.  I’m still vertical and above ground.
      

Top-o-de morning !!
Just got back from downtown and got to hear the words I was looking to hear.  Local, indolent, very, very early (again), could do nothing more if I so desired.  Could do a light weight chemo, Rituxan again or as everyone else has suggested, some very low dose radiation as my type of NHL responds extremely well to it.

It was really good to see my transplant doc again in the new digs at the Mothership.  He put everything into proper perspective and I feel good about where I am in all of this.  Its not gloom and doom, time to get my affairs in order stuff.  Its like I got a zit and we lanced it and we move on.  Do pay close attention to your body cuz it can tell you things if you are in tune with it.  Its pretty amazing all of the advances that have been made in the treatments and options.

So I have decided to give the radiation a shot, even though its one thing I said I would never do.  So with a little nap time, it'll be off to the other hospital to check out the radiation stuff and meet the team this afternoon.

I think that I can now start unwinding all the angst and thoughts that come with your first relapse.  Being in the best of hands, its more like I need to worry about getting hit by a bus more than my cancer.

Its been a scary and interesting past few months and it has helped me to redefine and refocus my priorities.  That will be the gift of this latest experience.  I have been drifting aimlessly wondering about what would happen when it came back.  Now I have been there and done that and can move on and even try and put Chemosabe back up on the shelf.

Thanks ever so much for the thoughts, concerns and prayers.  It has helped me get through this by giving me a place to vent and reflect.

Love you all and this place.

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