Mickey Mousing with Stem Cells

Today we were at BI at 8 am for vascular tests, a consult and a meeting with the stem cell transplant coordinator. WE HAVE A DATE!! Jim will begin his SCT preparation in mid-May, and the process will be complete on June 9 when he gets his clean stem cells! There is a thrill in knowing, not withstanding the anxiety.... but it is a step in a positive direction, and we both embrace it. Before they will give us an unmitigated green light, Jim needs to pass a few more tests, including dental, cardio, etc. He needs to be healthy enough to survive what will be a decimation of his bone marrow, and a rebuilding from scratch.

On the less wonderful side, Jim has experienced some vision loss over the past year. For those of you who know him realize how his LIFE revolves around reading books, scientific papers or the computer. Not being able to do this this is unthinkable. One eye is very bad, the other seems about 25% affected, but the ophthalmological surgeon has ordered an MRI to rule out a tumor. So we wait for Thursday to do the MRI and still will have to wait on an ultrasound appointment before MAKE the appointment to see the eye surgeon for results. *Just since I wrote this, I got a call that the MRI must be postponed a week due to insurance meddling and the vacation status of the referring doctor. And so it goes.

One odd sidebar to this story is about acquiring a new appreciation for silence. All my life I have handed out advice like a syrup salesman at a waffle convention. Linda had answers. Just ask her. And now that I'm in this, I realize several things. First, if someone has themselves under control, it is really a mistake to offer sympathy, or even much of a hug. Most of the time I am fine, once in a while I am one forgotten little brown pill away from a mess you don't want to be a part of. Linda of the big-hug- and- a- pat-pat-pat, "it'll be okay " has learned a lesson. Give vulnerable people some space. If they want a hug, they will come for one.

The second lesson is that all the advice I have so blithely burbled over the years comes back when the tables get turned . My advice not to worry about things until they are actually happen has returned to challenge/haunt me. Did I really expect others to apply this advice that is so hard for me? Okay, so I have decided to refer to the MRI as "just another test to rule out the bad possibilities." People have EKGs without a heart attack, and CAT scans, that turned up clear of obstruction. Jim will have this test and the results will help the doctor to know what to look for next.

To quote Elbert Hubbard, "Life is just one damned thing after another."

More of the Saga

I know I should update the blog more frequently, but life seems to roll ahead like 26 miles of tweed fabric. Jim's ups and downs in chart form would look like an EKG. He is doing okay, although pain control is sticky business, and everything he eats tastes terrible. Keeping him nourished is a challenge, given how little interest he has in food. We borrowed a treadmill from my sister because the doctor wants him to walk 30 minutes without interruption. Huh?! He didn't do that at 40, I'm not sure how MM will have fixed that problem. I sometimes push him to the elevator in a wheelchair. Dr. Misconnection, paging Dr. Misconnection.

The past week saw the sudden loss of the husbands of two friends. One was an older man, but in basically good health who suddenly died. The other was a man Lynn worked for a few years ago, and whose wife and kids are close. He died in a horrible car accident. At times like these life feels even more random than usual. Here is Jim, so recognizably sick, but still pressing forward, while these other men seemingly had no advance sense of their destiny at all. The wife of the first man has her mother living in her house... 90 years old and still alive. Wow. What kind of karma is this!

Meanwhile, all the regular stuff continues. I have decided to try to ramp up my catering business a notch, given that accepting an ordinary 9-5 job wouldn't work even if I could find one. It is one thing that I do love doing, although the most satisfying work is still doing receptions after funerals. Sounds like an odd calling, I know, but there is definite satisfaction in taking over all the minutiae of feeding friends and family for someone mourning a loss.

Besides the turn-around is fast, which helps me work around my other responsibilities.

Tell me, is it really tacky to bring my business cards to the Critical Care Unit of the Needham hospital?

Ya?

You think?

Getting Better!!!

Just a quick update... Jim is being released tomorrow after he gets his chemo. He is feeling, in his words, "terrific!" They still have no idea what had made him so sick, but are looking forward.

The prayers and good wishes are working. We have no better explanation!

Happy Easter (or Passover) everyone.

A day in the Life...... (written by Linda)

(Starting with a side note...I googled and image to go with the post, and since I'm still fried, I tried the hospitals ER....this is what came up... Bahahaha) ~Lynn

Bad weekend... Jim was weak and sleeping a lot, unsteady when he got up. Drank a few protein shakes, but that was it. Didn’t dare leave him, after his fall 2 weeks ago.

As of Monday night, he had eaten NOTHING since Saturday, and consumed only about 4 oz. of fluid all day. Pain in his belly, really bad pain. I called the page number for Myeloma expert, and was told he should go to ER for eval. Jim resisted the idea, and even drank a glass water for me. Took his blood sugar and it was ok.

Tuesday, I bundled a shivering Jim into the car for a 1pm regular appointment at Shapiro for chemo. Routine Blood Draw. Waited 1 hr. 15 min. for him to finally be moved to a bed. Another blood draw, put in a heparin lock; Chemo scrapped, ambulance called to transport him to BI ER. He was in writhing pain.

Waited in bay outside ER for 1.30 min. Brought into ER and placed in the hall. Haven’t seen this many parallel litters since MASH. This happens so routinely they have parkings spaces marked off on the floor inside the ER for the gurneys. All rooms full. Tap foot repeatedly. Patience is becoming my daily challenge. Finally got a room, no nurse, no Dr, no meds. Called Lynn to go back home for his pain meds. Finally, an MD (looked about 16) came in, took half our info, took a call and left. Saw him over the next hrs. at the desk, but...

Finally Dr. Laura came in and she seemed to have a head on her shoulders. Standard vitals, another round of the same bloods they took 2 hrs ago across the street, EKG, aspirin, nitro for his elevated BP (topped at 203/130) then CT scan of stomach area, then drink the barium for nuclear med. Couldn’t get proper results because they wanted the barium injected not ingested, but his ONC vetoed that to protect his kidneys. Two more blood tests. No one in the ER was over 40, and only a few over 30. OMG! Even off duty MD’s should not wear their hat brims backwards once they are MDs. Call me old fashioned.

Hours dragged by waiting for EVERYTHING. Transport was backed up, the equipment goodies like CTs were backed up, the people who read them were backed up. So about 12 hours after the original appointment, they updated us. They had found NOTHING to explain the belly pain he had. They HAD found Jim a room in the building adjacent to Shapiro, and called for.... another ambulance to take him BACK.

Ka-ching!!! You have to use an ambulance to cross the street. Both ways. OMG

One and a half hours later, the ambulance arrived. Couldn’t help but musing that I would hope for better response time if I had a limb dangling!!! Ninety minutes to get an AMBULANCE!?? And you need an ambulance to get admitted FROM the ER??

So that is the short version of just one day in the life of the Muckerheides. Lynn came in at 4pm and wouldn’t leave without me. And I wasn’t leaving til Jim was back in the ambulance. Got back to Needham at 3am, and Jim called at 6:30 when he woke, as I asked him to. He is the perfect patient in a lot of ways. The needles don’t phase him, although both arms are bruised beyond belief from all the assaults. He does what they want him to do, and encourages me to question and respond to the personnel in his place. I drive his car. He is the permanent passenger, shrinking on a daily basis, just a tiny bit. The loss of control must be mind-boggling, but he is as cheerful as can be expected, considering the perpetual pain he is in.

Learning more about my husband with each passing day.

Is this the Garden of Eden?

Now that snow seems to be less of a consideration, here is an update on the flora and fauna attracted to our home. Our pet squirrel, Nutjob, is still in residence, no doubt preparing a furry nursery for a whole six-pack of little nutjobs. Yes, an exterminator is on my short list.

Mid-morning yesterday, I spotted a fairly large black and white creature grocery shopping in the driveway between Laura's car and my own. Safe in the window above, I had chance to see what a truly beautiful creature she was... shaped like a mongoose if that's any help. (I didn't think so) Political correctness has compromised my mind sufficiently that I thought if I didn't call it a skunk, it might not be one. Her tail was lustrous and snowy, trailing out behind her like a boa on Mae West, not at all the cartoonish boxy body and vertical tail of Bambi's bud. This gal looked like a groomed and pampered Paris Hilton pet.

Aaahhh, if things were always as they seemed. Then it might be under HER porch.

Note to self : ummmm.....

Jim is sleeping a great deal, and that means pain management is going pretty well. Lynn took his chin stitches out yesterday without incident. His chemo has pretty much stopped lowering his protein count, so they will be adding Revlamid, to jump start the descent. Looks like it will be another month, at least, before we get the date for the SCT. Disappointing in a way, but it is to assure he has the least possible cancer cells in his body.

After his tumble two weeks ago, I really don't feel comfortable leaving him alone in the house for much time, and only if I am going somewhere local. Hopefully once he has his stem cell transplant, and has a little time to recover, things will go more smoothly. Meanwhile, I am not minding becoming something of a homebody for a while now. There is always something to do here!

Thanks for your e-mails, notes and cards. They remind us we are surrounded by love and prayers.