Tuesday, December 30, 2008
2009 looks to be a bumpy but worthwhile ride!
By last night he had convinced them to let him out, so at 7p he returned home, in part so he could have the "freedom" to go into BI Boston hospital and have an appointment, to OK the return to chemo next week, as well as having marrow harvested. While there, they found 2 things that they really wanted to keep him in Boston to further investigate (a vision/optic nerve problem as well as oxygen saturation being vvveeerrryyy low). Poor guy! He just barely made it home, and had come down this morning practically skipping (ok, that's a gross exaggeration) and commented that he's not been actually pain-free like that in so long. Of course, that's not MED-free and pain free, but hell, we'll take it!!
Mom is amazing, as always. She knows, well, everything. She knows the routines and process, and details that surprise even the Dr's. Of course, the bag-boy at Roches pushing her groceries to the car is still bent over in the parking lot laughing his silly ass off, at her trying to get into someone else's car with her the groceries. (Yes, in Needham someone still walks your cart and bags TO the car, and moves them for you...AND you aren't allowed to tip them. Having grown up with that custom, I was surprised when nobody from outside-this-area knew what a "bag boy" was!) But anyway, hey, everyone deserves some cheap entertainment to keep the smile-across-the-world, no? I think it's fair to say that her attention is literally being focused 100% where it needs to be -on Dad-, and the little things, like knowing your own vehicle, are best left to the grunts...like Laura, Matt and myself. I think she just did it so we would all have a laugh....right, Mom?? That was all planned out in advance... she's so giving! (You KNOW she's going to slap me silly for telling that story, but I'm taking one for the team here!)
So, on this 12/31/08...we prepare to take 2009 by storm, sneak attack, and in a fabulous match-up-of-wills. I don't think any of us have EVER been surer of a pending challenge, but overall, I'm confident we will fight through the sucky parts, and laugh at the rest...
Happy New Year, everyone!!! Where ever you spend your New Year's Eve, don't forget to be glad for all the little things. This year we're thankful for all that is going well. The 2009 glass is half full.....Cheers!!! Just because, as the image indicates, the collective (and former) Needham-Muckerheide's should all be wearing "Contents Under Pressure" t-shirts, doesn't make it ALL bad, right? Sometimes it's just champagne, sparkly and bubbly, and sweet - and all over the floor. Now get a damned towel before UnSteady Jim comes along and slips, fer cryin'out'loud!! ;o) Crazy, I know...that's why you're still reading!!
Friday, December 26, 2008
The Morning After
Editorial Comments by Lynn: I just added the photo of the youngest grandchild, Drew, who lunged into Santa's arms upon Santa's arrival. Drew has a special bond with Jim (aka Grampy), and I think provides an element of comic relief and "youth" that no medicine could provide. Here's the most precious moment of Christmas (captured on film, anyway) of 2008...
Sunday, December 21, 2008
Silent Night?
Thursday, December 18, 2008
It's a Christmas Miracle!!!!!
Tuesday, December 16, 2008
A week later...
Overall the past week has more to recommend it than not. Chemo continues, with no serious side-effects. Jim has had much better pain control, and is lucid all the time. Although he still sleeps a lot, he has periods of productivity, as he strives to bring more order in the office, which had rolled far out of the stretch of ordinary mortals.
Tuesday, December 9, 2008
New round of chemo.
Good news. Monday we saw "the team" and got a lot of answers, all of them positive. Jim's numbers continue to be good, improving with each chemo round. We started another after the appointment yesterday, and they will continue into January, for a total of four rounds of 4 treatments each. We've pretty much abandoned the idea of splitting treatments between Needham and Boston. Better to keep continuity even if it is less convenient.
Friday, December 5, 2008
Constantly changing
Tuesday, December 2, 2008
Looking good
Sunday, November 30, 2008
The days since Thanksgiving weekend began have been a treat beyond measure. Jim's pain has abated, so he is up and around more. Hopefully the radiation treatment to his broken ribs is taking its healing effect.
Friday, November 28, 2008
Thanksgiving was exactly what it Should Be...
I hope all of you had a wonderful Thanksgiving, too, as great as ours. Thanks to all for the thoughts, prayers, and outward expressions of compassion for the way things are at 793GPA these days. Thanks, also, to those who read along quietly, and send thoughts and prayers.
Wednesday, November 26, 2008
"If You want to hear God Laugh, tell Him your Plans"
According to reliable sources, the above quote is from Spanish or Yiddish folklore, or uttered first by Mother Teresa or Woody Allen, depending on who you ask. But with so many people claiming it, there is probably more than a morsel of truth.
Sunday, November 23, 2008
The digest version of the last 24 hrs...I defer to the pro, tho...
Anyway, he's home and as I understand it, today was a more normal day from the pain-aspect. Let's hope that continues...Like Mom said, we're seeing more of the "old Jim again".....
There is a contest going on to see who has the most effective solution for squirrell-catchin' at Mom's house. There's also a prize for most creative assault/attack/trap/weapon. Well, heck, let's make a WANTED poster for the flippin' thing and open it up to the free world. Ya know, in some places they eat those things...I can't even get my kids to choke down a brown sugar glazed carrott - never mind a rodent in need of Ritalin. Of course,what I just did on the grill to the Thai Ginger chicken that marinated all afternoon....well, let's just say it's unrecognizable as food.
P.S. Anyone who suggests some O'Bama-esque notion of putting on squirrell-like-ears, going out onto the flat roof and trying to sing woodland creature songs to this Squatter-In-The-Eaves and peacefully asking him to move somewhere else will assume the wrath-of-me. The goal is to leave a mark on the freakish thing, as big as my perpetual irritation. ;o)
Saturday, November 22, 2008
Update (clever, huh)
Thursday, November 20, 2008
And Now, a Word from Our Sponsors...
Usually off topic
Even in the darkest of situations... no, make that always in the darkest of situations, there is something wondrous, or unexpected or quite funny. It does help to have a warped world-view as I do. So I will share with you, dear reader, a bit of the unusual side of our predicament.
Tuesday, November 18, 2008
Back In Boston Hospital...hopefully fairly pain free!!
Thanks for checking in!
~L
Do you hear what I hear?
In early October, Dad began chemotherapy and it really went very well. He had no "ill side effects", like the typical hair-loss and loss of appetite and nausea. His numbers remained steady or improved, including kidney function and details of that nature. He was in some pain, but after some pain-management steps put in place, things looked OK for the time being.
This type of cancer, being a sibling to lymphoma and leukemia, takes it's toll on the bones, primarily (as mentioned before, it directly is cancer of the plasma cells in your bone marrow). It affects the "core" of the body first, and extremities later, so hips, ribs, skull, and vertebrae are hardest hit for pain and "weakening". He had a fall in the driveway, due to the increasing unsteadiness caused my the illness. Fortunately, he was alright and we moved on from there. He had another when Laura was home, but again, aside from having to scoop him up, he was OK.
MM (Multiple Myeloma) causes forgetfulness, balance/coordination issues, confusion, hearing loss, and an eye-issue that he's having evaluated later today, among who-knows-how-many-other-things.
This brings up through last weekend, when Dad began having pain in his ribs, creating some uncomfy breathing problems - just labored, really. They proceeded to worsen and on THursday, he was brought to the ER at BID-Needham. Following the XRays, a diagnosis of "several" broken ribs and probable pneumonia as well. He was admitted, given morphine in addition to his already high-potency regimin and he was able to rest up a little. He was discharged in under 24 hrs, and sent home in extrordinary pain, and thus trying to "move about" with the rib pain that is painful to even watch. He is obviously in enormous pain, even while sleeping - which also isn't easy.
The possible pnuemonia promptly cancelled his next round of chemo (set to begin on Friday, the next day). This felt like an enormous setback, but hopefully we can resume quickly and stay on with the progress. Like all of you, we wonder how bones that are compromised enough to break under the simple weight of breathing or normal movement can heal, but that's one of the next questions...it's not hopeless at this point, but it's clearly very serious and severe and aggressive. We won't give up without doing everything possible to take care and protect him until his body is able to do it all again.
Also determined in the last week or so is that he has lost (Get A Load of This, Kids...) SIX INCHES in height, due to the bone-loss in his spine and vertebrae. He was 5' 8.5", and is now 5' 2.5"!!! His mobility, between poor balance and sheer pain and trying to compensate/protect his ribs and such, is prompting us to relocate him to the first floor, probably by the weekend.
And in the final segment of the SadNewsUpdate, he fell during the night again, and Mom found him, but we've reached a point where he can not be left alone for any period of time and we are going into "shift mode" to make sure there is always someone home with him.
I appreciate every prayer, well-wish, and kind thought that we have found in our fantastic and enomous network of friends. To those of you who have remained in touch so constantly and think to ask, it means the world. And to those who haven't been "kept up to date", I am really sorry. We've been so busy trying to sort this out that I know I personally have neglected to reach everyone that I should, and again, I feel terrible about that.
Love to all, and stay in touch...I'll try and do better with keeping this up.
~L
Friday, September 5, 2008
Finally, a step forward and some answers...
For the few of you who will ultimately be getting this for the first time, this is a preliminary diagnosis - so far. Dad/Jim got a call from his regular family Dr. with news that he has Multiple Myeloma. For those of you saying "WTF is THAT?", I am - for the moment - inserting a clip from a journal that is fairly straight forward and readable.
"Multiple myeloma is a malignant proliferation of plasma cells that involves more than 10 percent of the bone marrow. It is a prototype primary malignancy of the bone associated with malignant plasma cells that secrete monoclonal immunoglobulins into the serum, the urine or both.
The family physician is often the first to identify multiple myeloma. The expertise of an oncologist is then enrolled. Other specialists join the team as needed to address specific concerns or complications. As with other malignancies, the family physician assists the patient and the family in understanding the disease and the treatment-related side effects, and in improving the patient's overall quality of life."
http://www.aafp.org/afp/990401ap/1885.html--------------
"Often, collections of cancerous plasma cells develop into tumors that lead to loss of bone, most commonly in the pelvic bones, spine, ribs, and skull. Infrequently, these tumors develop in areas other than bone, particularly in the lungs, liver, and kidneys.
Symptoms and Complications: Because plasma cell tumors often invade bone, bone pain, often in the back, ribs, and hips, may occur. Loss of bone density (osteoporosis) resulting from plasma cell tumors weakens bones, which can lead to fractures. In addition, calcium released from the bones may result in abnormally high levels of calcium in the blood, possibly causing constipation, increased frequency of urination, weakness, and confusion."
First things first: Until Mom and Dad have some answers regarding the status of HIS diagnosis, we don't REALLY know much of anything, except that there's more to learn. Often Radiation and Chemo are used, but many other treatments and drugs have become available, including Marrow transplant (or re-transplantation of your own, harvested prior to Rad and Chemo) and donation are options for many with MM. We're WAY too early in the game to have a good read on that yet. Although it is considered "incurable", it is also potentially a long way off before these things (aforementioned in the quotes) become that severe. Dad is meeting with a Hematology-Oncologist today, and they will begin the testing process.Next: Dad/Jim is incredibly private, like many men, and it is important to both Mom and Dad that this not be the "primary topic of every conversation". The rules of the game, until further notice, are to be aware and sensitive to the situation, but not ask about it. Mom, especially, but all of us are trying to get through the emotional part and figure it all out, and rehashing or discussing it is really hard, even though it's all born out of genuine love and concern - JUST EXACTLY as Mom/Linda would be if it were one of her extended loved ones, it's just too hard to "keep it together". For the moment the plan is to rally around and figure out what the steps will be going forward. We will update here as things develop. Matt has been an extensive investigator, and found sources of a huge numbers of people who have gone into remission and lived MANY (often a dozen or more) cases where remission allows life to return to normal, and they golf and do many of the physical activities they had done prior to the bone/back pains that they had often suffered from for YEARS before a diagnosis. This is KEY INFO here. There's value in optimism, and Matt is leading the Optimistic Band...he just needs a funny outfit to complete it!
"What can I DO??" - We know you all well enough that this will be the very FIRST question. Letting this sink in without discussing it AND without "avoiding" us is most helpful, until we get the ground solid again. We are blessed to have such varying - almost perfect - shift coverage, before even leaving the comfort of home. Laura works days, Matt nights, and I'm scattered but around much of the times in between. Surely we will need to make sure we have lots of kid coverage, but it should prove to be a reasonably managable situation for a while. When we know more, surely, we will fill it in here.
I'm sorry to address this in such an impersonal way, but we are going to keep our eyes firmly focused on the ultimate goal. Please know that we appreciate every single prayer, and beleve firmly in the power of positivity and the magic of Medicine in this era, particularly.
Thanks to all!! And Pray-Away!!
~Lynn