The Swap!

Sat & Sun, June 28 & 29, 2008

Well Hudson made it in from the east coast to take over the care of his father so I can leave the west coast and head back to close on the house, resign formally from my job (set a date), work out the details with my boss, pack the house (ARGH!), go to the going away party for Dave and I, and make the move (which should be sometime around mid to late July).

. . .

I am so very proud of our son.  He was 22 years old and just finished his third year of college (out of five) and when I asked him if he could forgo the summer job hunting and come out and take care of his father instead, he said, "yeah, sure".  I asked him how long it would take him to get his stuff out of the apt, in storage and so on and he said a few days.  He pulled it all together in about 5 days.

A moment here to just talk about our children.  I didn't know fully how they really felt about everything.  I assumed (and hoped) that they were talking with each other.  I know that at the time Montana felt very strongly that it would be OK.  She felt this immediately.  There was a calmness.  Since I was able to tell her in person before I left, what was going on, it was very comforting for me to "feel" her energy as I recounted what had occurred up to that point.  With Hudson it was a little more difficult because I had no choice but to tell him over the phone.  Its not always easy to read people over the phone.  On the surface however, he seemed concerned but confident that it would sort out.  Later on in the saga, both children asked me what they could do.  I told them:

"Live your life, do well in school, stay out of trouble, and try to handle your own problems as best you can."  


It may not seem like much, but to me, it was HUGE.  If I could focus all my energies on getting Dave stable and well, not knowing what was ahead of us really, except that it would be time consuming and fraught with hurdles - to not worry about the kids would free up a great deal of my energies.  The last thing I wanted was for them to stop going to college, get depressed or whatever one does when hit with a trauma such as this.  We were now 3,000 miles away from them on top of everything else!

They are both pretty resourceful, self sufficient kids.  I raised them that way.  I couldn't help it.  I lost my father when I was just shy of 13.  He rocked my world.  He was my hero.  When I was about 16 and coming out of the "fog" of losing him, I realized that he had taught me all I needed to know to live my life successfully.  It was quite a moment. I still remember it very well, it was pivotal.  Somehow I pulled myself together and began to really live at that point.  When I had my children, I just very naturally taught them things very early in their life.  It was not uncommon for adults to comment.  When they were teenagers they would often complain to me about how so and so's mother does this or that for their kids!  Oh well... later though, my son called me when he was in his second year of college and told me how his housemate was completely inept at taking care of himself.  That his mother would come and get his laundry each week and take it home to wash, buy groceries and CLEAN HIS ROOM!  I was incredulous of course, and I gently asked (as I couldn't tell yet if he was resentful or annoyed), "Do you want me to do your laundry or something for you?"  He said no and then went on to concede that I had done a good job raising him to be self sufficient and that while at times he hated me for it, he realized how much better prepared he was for life.  Sniff, sniff.

So now here we were, a family, at different season's of our lives, the children budding into young adults and negotiating their life with much less supervision from their parents, Dave and I on our own adventure as "empty nesters" - and we have this "thing" happen.  How do we move forward?  How do we keep going?  What should continue as is and what should change?  I have learned in my life that you keep moving forward.  Small steps, big steps, it doesn't matter as long as you are indeed moving and it is forward.  That is my stable datum if you will.  So all my decisions were with that basic premise.  It has served me well in the past and it has served me well through this.

I want to take this moment to thank my children, Hudson and Montana, for being there for their Dad and I, for doing so incredibly well in school and continuing to move forward in their lives when they weren't sure if they shouldn't do something else.  I am incredibly proud of you and proud to be your mother.  Everything I had hoped for you, I have received in spades... and everything from now on is gravy!  Continue...  Love, Mom

Miscellaneous Stuff

Saturday, June 28, 2008

Dave slept and slept after our trip out to see the house.  I was a little concerned he would have trouble sleeping in the night, but he didn't.  It was really good for him to be able to rest so thoroughly.

Our wonderful friend Mari sent Dave some of her killer cookies in the mail yesterday!  YUM!!

My phone battery will barely hold a charge anymore, sigh, another thing to handle.

Got the Washer/Dryer ordered.  That's done.

Today I need to boot Dave out of the guest room for a while so I can clean it up and get my stuff packed.  It looks like a bomb went off in a rag factory (as my grandmother used to say!).  I'm anxious to get home and take care of stuff, but I'm wanting to stay and keep Dave moving forward toward restored health.  It is difficult, but we will get through and things are in place to keep Dave moving forward.  A BIG part of that is all the wonderful good wishes and messages along with other support that those who are physically close enough to us can offer.  Its amazing how folks will rally around and do what they can to lend a hand.  I couldn't do this nearly as well without all the support.  It touches me deeply.

Dave continued to be frustrated that I was leaving.  We have these conversations and I think he understands and everything is set and then bam!  These moments of mild hysteria are sometimes, how should I say it... inconvenient.  I feel incredible stress and overwhelm at times.  I'm just running on pure adrenaline.  Don't give me anymore to think about, to talk about, and for god's sake - to do! Dave is having trouble focusing with the pain and the drugs.  Then he has pockets and moments of overwhelming dread and fear and worry.  Sometimes we are better at reading each other than other times.  The onus is mostly on me to do this now.  He's not really equipped at the moment to look beyond himself and help me.  Every so often he will want a clarification on something that I thought was resolved and I have to fight my own confusion on that and restate everything, without anger or frustration or making him wrong, just state it again calmly and directly.  Answer his questions, explain the sequence necessary.  I don't think he really understands that I don't want to leave, but we need to keep everything moving so that I can be with him and help him in his journey to get well.  I don't know what else to do or how else to BE.

Breathe... breathe...

Our 27th Wedding Anniversary

Friday, June 27, 2008

Today we got Dave's meds from the Specialty Pharmacy.  When you have highly controlled substances like Thalidomide, it can't be carried or dispensed by a regular pharmacy.  Dave has to do an interview each time a prescription is filled.

He put on some street clothes and we decided to high tail it an hour to Elk Grove to look a the new house!  I have only seen pictures of the progress.  Its almost finished, all the tile and most of the appliances are in (sans the refrigerator!).  The painters were finishing up all the painting and the backyard was graded and cleaned up. 

From there we headed back to Marysville for another radiation treatment.  Dave is holding up very well.  Its an hour+ drive each way.

Oh and yes, today, is our 27th Wedding Anniversary.   It was not something we really wanted to put a lot of our attention on.  We quietly acknowledge it and went about our day.  Not much more we could do.  It has never been a big deal to celebrate these kind of milestones like they are for others, but it was a bit poignant thinking about it now.  Sort of a mushy look at one another and then moving right along...

Moving right along meant me getting ready to leave Dave and go back to Maryland after Hudson arrives on Saturday.  I had moved my flight to Sunday so that Dave would have coverage and I could "hat" Hudson on what needed to be taken care of.

Brock's Ice Cream Parlor-Blast From My Past

Wednesday, June 25, 2008

Today the Cancer Center seemed to be having some scheduling issues, I think the machine was "down" and needed some repairs.  So after rescheduling us twice we finally made it over there around 3pm.  It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on.  But like many plans that go awry, something cool and wonderful occurs.

Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City.  Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream.  When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes.  It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone!  I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit.  They make their own ice cream and it is wonderful.  It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite.  Not too mention getting to share a childhood experience with my husband.

When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.

If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this.  Its an old story... we take these things for granted.  Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way.  I don't know... its an interesting and old concept.  But I will say, it had a dual meaning for me.  I used to go there with my father and thinking of him always makes me smile.  Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal.  I have found that these "little" things really can recharge me and sustain me.  When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den.  I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated.  It can all be such a mishmash really.  But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave.  It was familiar to me and something to share with Dave.

Radiation Treatments by Ambulance

While Dave was in the hospital they started radiation treatments to his T8 vertebrae area.  Because Dave couldn't move hardly at all without tremendous pain and effort, "people" were sent to get him.  "People" turned out to be an ambulance crew.  Ok, so we are across the street from the Cancer Center and Dave had to be taken out on a gurney, into an ambulance, driven across the street, taken in, radiated, back into the ambulance, across the street, into his bed.  This little diddy costs $1,000.  We racked up quite a bill.  Now I understand the ambulance folks need to get paid, but I have to say, why wouldn't a wonderful hospital like Rideout Memorial and the UC Davis Cancer Center have provisions for this?  I could see it and I could walk to it.  A skywalk, internal personnel, something.  One of the more INSANE things you deal with when serious illness hits you the way it does.  What are you going to do?

Why a Researching Facility vs. a Treating Physician

This is an article I was asked to write after a bit of a debate regarding the treatment at Little Rock. It originally posted at Pat Killingsworth MM blog in 3 parts. I'm going to repost here for you. I will be getting back to posting more frequently now that we are on the "Other Side" of our major medical intervention. I didn't want to wait to get this up.


Why I chose a research facility vs. a "treating" physician...

I worked for the University of Maryland's Center for Environmental Energy Engineering. I was their sole administrator, it was a small group of highly respected, hard working research professors with about 40 graduate students, mostly PhD seeking students. My director is world renown in his field and was an Editor of a archival quality research journal published by the "society" representing his area of expertise. Part of my job was to be his assistant on managing the many papers submitted for peer review in the hopes of being published in this journal. The society used an online publication management program, commonly used now by all the big journals. This allows authors from around the world to submit their papers electronically, and then for the Associate Editors (we had 12) to organize and invite "reviewers" to review these paper submissions. This process from paper submission to publication (should they be that fortunate) took 18 months to 2 years, i.e., in print and mailed to subscribers. I won't bore you with all the details as to why that is, but everyone is busy, they don't get paid to do this, it is an honor, but it is work to pour through someone else's research paper, examine the evidence presented, check the calculations, check references, etc., and then make a recommendation. Very few papers get to publication in the first 3 months. Edits are often suggested, challenges to claims made, etc., and then it has to go back through again and so on. Once approved, then they go into the next available journal publication, as the actual publication process is another couple of months, so they get in line.

Each journal has requirements for publications that include limits on words, tables, graphs, photos. Whatever the research entails it must fit into parameters listed by the journal. Some don't allow your paper to have been submitted, let alone published, elsewhere. Some (I would argue most) don't let a non subscriber see the published paper. Some won't even let you present it at a conference if you've been published. My point being, there are all sorts of rules in publishing scientific research that is backed up by the peer review process, which is the system we value at the moment. Our journal was a "Blind" review. That meant that efforts were made to have a paper go thru review without knowing who the authors were and the authors not knowing who the reviewers were. This was to attempt to minimize biases and attitudes based on the personalities involved. I will tell you that that process is not always successful. In a small group, its not always easy to mask who the authors are on a particular subject.

I knew, perhaps uniquely, that if we went anywhere other than an actively researching facility, they would be arguably 2 years behind what was occurring right now. When I presented this to our original diagnosing physician, who would not be treating Dave long term and had radiated him and started him on a Thalidomide/Dex regimen immediately, he admitted that I was exactly correct in my analysis of the situation. While MM is seeming less and less rare, the fact is, it is still classed as a rare disease. The local treating physicians that were available to us had a few patients. Quite frankly, they had fewer patients in their 30 year careers than a place like LIttle Rock has in 3 months. But I digress... I said to him, "Let's be honest Dr. L, when you get an MM patient you guys pick up one of your medical journals and find the latest, 3,000 word paper, read it over, and prescribe treatment based on that, and when you do that, you have little understanding of all of the research and you are already 2 years behind what is current." He said, I was absolutely correct. I said, "unless of course, you go to a Myeloma Conference, but then why would you, if you have so few such patients?" He admitted, he didn't and he wouldn't. Now admittedly, he was a general onc and would not be "treating" Dave. We would be heading to those "more knowledgeable" in the blood cancers. While they might know a bit more than he did, my personal assessment was that it was a bit more, but not enough to treat my husband.

Paper publications and presentations. In order to publish papers they MUST produce statistical data that they have collected. It must be verifiable. As a result, they will produce their data, life expectancy, assumptions, theories, conclusions, etc. If you go to a local oncologist/hematologist, they will not collect this data and they will not share this data with you, period. And quite often they will be offended that you asked such a question, as I experienced. A simple question for a researcher, not so for someone else. You ask it at a research facility and they will gladly share their published data, but also their current unpublished data, as illustrated above, the published stuff is old. Most of us know that statistical data can be manipulated and slanted. Its a fair argument and one that we must rely on the peer review process to meat out. Eat red meat, don't eat red meat, eat red meat once a week... drink a glass of wine, don't drink a glass of wine, drink a glass of wine once a week. It can indeed make you neurotic.

As I went through this process I also learned, as many of you may know, but I did not, that the stem cell transplant was NOT the treatment at all! It is used to help you recover your immune system to safer levels as soon as possible. It is the DRUGS used prior to the stem cell infusion that is the treatment. Then, it is the treatment AFTER that is in many ways just as crucial - this after care would be years (hopefully). So, for me, as a wife and a caregiver, the last thing I needed was to have my husband seeing a physician that made him feel like everyday he was still breathing was one more day than the doctor thought he would have. One who was just going to give him some drugs to extend his otherwise doomed life, with a "well we tried" shrug. I'm not suggesting that anyone else's doctor has done this, but we had two who absolutely do not believe you can survive MM for very long, end of story. That was simply unacceptable to me, and I had the good fortune of having two other doctors, who don't treat MM, who felt the same way I did, based on their understanding of the research activity in the disease of MM. They unequivocally advised me NOT to take Dave to those doctors for treatment. They are friends and they know my husband, and agreed he needed to go to a physician who was up to date, experienced, optimistic and hopeful, because in their view, there was every reason to be hopeful at this time in the treatment options for MM.

When one doctor told me that "the new treatments" were not proven, my doctor friend reminded me, "Well they have not been disproven either." That is indeed an important point here. We are in the thick of it folks. No one, knows the way out of the forest, but some have more experience, hunches, instincts about the path out, and some are getting more people out of the forest than others. I can tell you that when I speak to a physician, I have a list of questions, some medical, some not. When I ask my questions, I'm looking for answers to be sure, but I'm also listening for biases, personal attitudes, character. Some people think I'm crazy. Who cares? You just want them to fix you. Well, I'll tell you why I care. These things tell me a lot about a person's ethics both professionally and personally. What kind of team is a person likely to have supporting them that I will be in contact with more often than not. For instance, when I went to Little Rock and had our first visit to the infusion center, what immediately struck me was how long the nurses had been working there. I couldn't find anyone under 10 years (and several were over 16 years). That tells me a lot about a facility, the researchers and administrators behind it. They like working there. They like their job.

So what else can a research institute offer you? Well they are focused on one disease. Typically they have diagnosticians who are affiliated with their research as well. So when your scans are being viewed by a radiologist, chances are those radiologists are a part of the research team and have been looking at pictures of that disease day in and day out for a number of years. They don't miss much. Research facilities often have the latest equipment, foundations, endowments, fund raising, federal grants, private donations, and community support, etc. Some tests get covered by insurance because they are considered "research", where it might not otherwise. When insurance can't or won't cover it, sometimes the facility can absorb some of those costs because of the endowment/grant monies they have depending on how deep the pockets and the criteria laid out for those funds use.

Researching facilities are also hospitals of course. They can chose to go through additional accreditations from NIH and beyond. A good facility will always be working toward improving their ratings on the accreditations. They will have accountability to the organizations who have given them these accreditations and have annual visits typically. Its worth taking a brief moment to mention a little bit about UAMS of which the Myeloma Institute is a part of. Most of our diagnostic testing is outside of the Institute and within the framework of UAMS. UAMS has a mission for quality healthcare and SERVICE that is commendable. No matter what clinic you are in, they are kind, efficient, responsive. The goal at UAMS is that you do not wait more that 15 minutes for anything, anywhere. Of course this doesn't always happen, but for the most part, for us, it did. The care is very personal. Maybe its just good 'ol southern hospitality? I don't know.

Researching facilities tend to do much more diagnostics. Those who are not engaged in active research call it diagnostic overkill. Well, that is both the upside and the downside of going to such a place. Remember they are collecting quantifiable, provable, data. I would argue that they must do this to further their research as well as substantiate it. Not too mention that if you are a more difficult case, it might mean the difference between life and death. In our case, our consultation visit was 5 days of tests. They redid EVERY test Dave had already had and then did all of their tests as well. At the end of that 5 days we met our doctor and the consultation was completed and incredibly thorough.

Other tangibles, that some might feel are not important, but I found extremely valuable to both Dave and I. Because its a rare disease, if we treated locally, we probably would have never met a single MM patient in our travels back and forth. In a larger environment specializing in the treatment of your disease the valuable support from other patients and caregivers cannot be underestimated, in my humble opinion.

In many areas of medicine there are debates waging, not just our particular disease. I jokingly remind people "Well they are 'practicing' medicine after all!" When you are dealing with a disease like MM, make no mistake, we are all guinea pigs, period, end of argument. Having said that, I simply wanted to go where most of the guinea pigs were going and where they seemed to be living the longest. I found my Mecca, and you can find yours.

For those who have "heard" things about Little Rock. I will tell you that they never told us they would "cure" my husband. They never badmouthed the doctors who had treated him, nor made other claims about the disease treatments available. They simply told us how HE was doing NOW and what they did, what our time commitment would be and to let them know if we wanted them to treat him and that they could start tomorrow or at a later time. I can't tell you that there wouldn't be pressure on someone who was in dire straights, we were not, Dave had had a VGPR from the Thalid/dex regimen. His only real issue right at that moment was an untreated compression fracture that he was taking opiates for.

Finally, regarding Little Rock specifically. More than 1/2 of the patients there are patients who were treated elsewhere and the treatment failed, was not working, or was back. Their "treating" physicians didn't know what else to do for them so they sent them to Little Rock or sent them home "to die" as several told me personally. I will also tell you that I met many patients from other research facilities. The biggest names in the US, all of them had patients at Little Rock at some point. So for those who criticize Little Rock from afar, please remember that there are many who are satisfied and alive thanks to them. Are they perfect - Nope. Do patients die there - sadly, Yes. Is that unique to Little Rock - Nope.

Good luck to all of you. If you have the urge or chance to go to a place like LIttle Rock, at least go and have a chat. If you have specific question on Little Rock for me, feel free to email me directly and I will be more than happy to have that dialog with you.

New House Item - The Refrigerator!

Its daunting when you sit back and realize that in the midst of all this turmoil, I'm trying to keep many plates in the air regarding housing, moving, job resignation, the children, etc.

In our house searching in California, we learned that homes here are not sold with refrigerators! In Maryland you are required to sell a house with a fridge, but nowhere else in the country is that required. I've never ordered a fridge before! Its not like I wouldn't have liked to mind you, but we just always used the fridge that came with the house and it was always fine. Nothing fancy, but adequate. At times I have looked and dreamed about what I would like to have instead, so I wasn't completely in the dark. I new what I wanted and what I liked, but who has time in the middle of all of this to go shopping for a refrigerator. The house is in Elk Grove, I'm staying in Yuba City, I'm going back to Maryland! ARGH! Well, thank goodness for the internet and some basic researching skills. I found the one I wanted and was happy to order it from Lowes in Elk Grove. Sight unseen. The guy at Lowes was great, and answered all my questions about the one I wanted and I am satisfied and RELIEVED to have that done! Now onto the W/D, but that's not quite as crucial as the fridge so Irma can cook up her wonderful food for Dave when she gets here.

With everything else going on, I still have these types of things that we need to handle! People will often comment on how I "do it". I don't really know what to say about that. Is it my character make up? Or is it just what we all do when we are living it? My mother once told me that you never know what you are truly capable of until you are faced with it head on. That thinking about something you've never experienced and saying "I could never do that" isn't factual. She cited for me one of her very personal stories as a young woman. She and my father had gone to dinner at the Tack Room near Grass Valley, CA. It's on a two lane road, on a curve in the foothills. (She said that she could never be in medicine because she couldn't handle the site of blood.) The place was crowded and they were seated at a table nearest the door. As they sat down they heard the loud screeching of tires and crashing of metal. Without any thought they both raced out the door into the road followed by other patrons, where there was someone who had been thrown into the road (remember this was the late 60s, pre-seatbelts). The gentleman was unconscious and bleeding profusely at the neck. She reached down and "held" together his artery until the ambulance arrived. They took him from her, she stood up and promptly fainted. She said, "Don't ever underestimate what you can do when you simply must." I guess that is how I've lived. I would certainly prefer not to deal with this sort of thing, but what else can you do really? One foot in front of the other as best you can, relying on your entire life's experience and skill set to get you through it all. Its a focus, a mind set. Both of which keeps evolving as you travel on this journey.

My Aunt June on the other hand says that I have my grandmother's "stoic" genes! I suspect its a bit of both.