Time for a Momma RANT

Okay... not much happy talk today... Jim has been home all weekend with bronchitis which causes a ghastly crackling sound each time he inhales, like someone dancing on bags of potato chips. He is frail, unsteady-- the fall and subsequent hospitalizations were such a set back! He hasn't been downstairs all weekend, taking what little food he ingests in bed. Now, as part of his release, they are sending someone to analyze the "safety issues" in my house. I need a "helpful" stranger (to whom I should be civil) here pointing out the obvious like I need a positive pregnancy test. Maybe some of the cartons he has filled with recyclable trade magazines should be moved. Really?!! Perhaps Drew shouldn't leave the step stool in front of the john. THANK you. I'm sure this is a godsend to people with dementia, but we don't have loose railings, nor does he share an upper bunk with a tarantula. DUH! And he didn't trip when he fell, he passed out from low blood sugar!!! Not anyone's fault, but my clenched jaw is starting to mock my permanent smile. Someone's gonna get hurt. I can feel it!

I am angry that they sent him home in this condition. I am frustrated at the road blocks that just seem to fall out of the sky like acorns. I am impatient with the stupid paper work that just keeps on coming...bills for stuff we have already paid, and phone calls that take big blocks of time, just to untangle the misunderstandings compounded by an ESL alum. I'm weary of trying to be "Our Lady of Infinite Patience" (which does not come naturally to me!!!) when all I want to do is smash something and not have to clean it up.

Well, all these months, you have heard the "best" take on this miserable situation. This is a rough patch, but tomorrow will be another day. We have an appointment to see his doctor for the next round of chemotherapy. Hopefully the Revlamid (a new drug they are adding) will be here. It was ordered three weeks ago but is so toxic nobody seems to keep a supply. All kinds of cautions and disclaimers, etc. Can hardly wait. Jim too!

With luck, then it's off to the wake/funeral for Drew's grampa. We buried Lynn's grandfather- in-law less than a week ago. Know anywhere to buy sympathy cards by the box?

He's Baaaaaaaaaack.....

Hi kids! I just returned from picking Dad up at BI in Boston around 6:30p. He's home, fairly comfortable and has undergone a wild variety of testing, all indicating that "Of all the things we would typically be worried about here, and we've tested you for, you're clear." His new laptop came today, and when I left the house, he was getting acquainted with a new laptop which will hopefully keep him entertained and more comfortable than having to sit in the office chair to be online. Will be nice to be able to move to wherever he is comfortable.

The next major appointment will be on Tuesday, when there will be some discussion as to when the Autologous Stem Cell Transplant will be for Dad...could be essentially right away, unless they determine that one more round (his 8th) would be beneficial in terms of a starting point for the transplant. If he has plateaued, they will move on to the transplant.

Either Mom or I will try to post more on Tuesday....it's kind of nice to be waiting FOR something...instead of just waiting!!! Have a great weekend! Hope it's a SMOOTH RIDE!!!

For more on the unmitigated disaster of last weekend, click here. It's long and winding...consider yourself forewarned!

Last Weekend.....

Ok, I can only say I have NO idea where to begin...

I'll start with Dad's status, as I best know it.

Saturday morning Dad got up looking a bit crazed, or confused and headed out of the bedroom and up the hall. Once he got outside Drew's room, a dozen or so steps up the hallway, he went down like a Redwood, but not quite as gracefully. Mom and Adrien were already in the hallway talking, and Thank God, right there. He laid there, silently for seconds....too many of them, and was bleeding heavily from the beard. There was no need for discussion about whether to call for help...so Adrien grabbed his cell and talked to a "general 911" person...who transferred and then another person who transferred, and finally to the Needham Fire Dispatch. Note-To-Self - Use House Phone whenever possible!!

I jumped into the ambulance and was baffled at the length of time we sat in front of the house. While the guys worked on Dad, who was pretty unresponsive, although conscious. Finally, one of the EMT's asks if he is diabetic, and I said Yes...to which he replied "His blood sugar is TWENTY". Now, for those unfamiliar with the guage of diabetes, "normal" is 100-130. You can pass out at 70, and impaired thinking sets in at 50. One study indicates: "Coma can occur at glucose levels around 30, convulsions at 20, and permanent brain damage at 10." It is quite clear that if he had been alone, he would surely have died there....and fairly quickly.

Before even pulling away from the house, they had waved the magic sugar wand injection and he was beginning to make intentional sounds, rather than just vague grunts.

After everything from a neck brace (an hour later) to CT Scans and XRays of the head, neck, spin and chest....they said that he has rib breaks, but it's tough to tell if the lung is partially collapsed. For those keeping score, they aren't able to tell what was already broken and what broke during the fall...and it is hard to see through all the cracks, breaks and fractures.....to exactly what is going on under there! (yikes)

Sunday afternoon Dad was released, (while Mom prepped frantically for a catering job for Monday morning). Upon return, he seemed ok. Midweek brought increasing pain and finally yesterday it reached such an unbearable climax that he returned to "inpatient" status, this time in Boston, at BI. He's asked not to have visitors, as it is painful to talk and he's on enough pain meds that trying to focus is painstaking...

We will check back in mid-weekend or so, and let you know of any major changes as they happen.....sorry this one took so long! You'll have to see the other blog when I update it with the rest of the wildness of this weekend.....more than you can imagine!!

Take care, and love to all...Please do sign the comments even if you are just a silent reader!!!

~Lynn

'Exciting Days' you say??

So, I guess we tempted fate by wishing for busier days...Today was busy, to say the least! Mom called around 11:45a to say that Dad had fallen and the ambulance was on it's way...Aw crap...wasn't this the "week off" from the hospital? Evidentally that Memo wasn't circulated well.

In short, Dad is OK, despite having been admitted to the hospital in Needham after a brutal tumble and hours in the ER...stay tuned for an update from Mom that I'm sure will do justice to the circus of today. Wild time, the last 12 hours, but all's well that ends well!!

"A Change Of Plan..." I guess that should be the name of the whole book, and not just the chapter....or blog.

It was Vaccination, I knooooowwww...

This week has been exciting for two reasons.  Jim has had a small series of such good days it was almost possible to forget he was ill.   Then on Monday, we went in to have them harvest his dendritic cells, which will be the prime ingredient in the clinical trial vaccine they will concoct especially for him. 

(when did "exciting days" become a day you watch someone circulate their blood through a machine?  I've known exciting days in the past, and this ain't one of them!  The helicopter ride in Tokyo... that was exciting.  Winning a vacation to Caneel Bay... that was exciting. But this.... it's like suddenly having ownership of  a used pick-up truck become your secret dream.  May I ask for a recount, please?)

The way it works is that the dendritic cells stimulate the patient's immune system, which produces special cells that kill cancer cells and prevent relapses of the cancer.   This vaccine research represents some of the best work being done in this field.  This is phase  2 of the testing of this company's dendritic vaccine approach.

Jim was only there from 8am to noon, and sat in a bed with something similar to a dialysis machine hooked up to both arms.  They removed blood through a simple Heparin lock from his left arm,  emptied it into a centrifuge, and the dendritic cells were collected in a bag right above the machine.  He ate an omelet while this was going on,  chatted and rested, but over-all it was no big deal.   This is the same set-up they will use in a month to collect his stem cells.   Remarkable in its very "ordinary-ness".    This all feels like some fantastic dream.  Note to self: get out the "Alice in Wonderland" book and re-read it.

Nine-year-old Joe made Jim a Valentine, a cute little heart mounted on a popsicle stick.  Today Lynn ran into his teacher who recounted being so moved by the card she fled the classroom in tears.  When Joe brought it home, Kathryn was aghast, as big sisters like to be.  

 "You can't say that to him!!" she admonished.    So Joe threw the valentine in the trash.  But Lynn knew her dad AND her son best of all, and reclaimed the card, which came straight from Joe's heart.   And she brought it to Jim.

In crooked printing, it  read, "Grampy, I hope this won't be your last Valentine's Day."    

And Jim chuckled in appreciation, as Lynn knew he would, and said "ya, me too!!"