Riding the Wave - Multiple Myeloma

The Scoop on Dan Blog - Taking a moment...

2010-03-19T10:50:00.000-07:00

I'm taking a post break from my blog today and writing instead about Dan Patterson. (His blog "The Scoop on Dan")

I'm pretty certain that I met Dan when Dave and I were in Little Rock to begin our tandem transplant. Dave was fairly uncommunicative in those early days and I distinctly remember talking to a bright, handsome fellow sitting across from us. His wife Susan wasn't there as I recall, in the infusion center at the time. He was from Denver, he had had a transplant a couple of years before and now he was in LR. I remember that I liked him a lot and he was very upbeat and a great pleasure for me to chat with at the time. Anyway, I finally got caught up on "his story" last night and this morning. What a journey he and his family have been on! Its always amazing to me how different we all are and yet how much we are all the same. Dan has two beautiful daughters who were in college at the time and are now done and doing well. We have our two doing the same, with Hudson graduating this May and heading to Orlando to work his post graduate internship at Epcot.

So back to Dan, and his rock, Susan. He is currently at MD Anderson getting ready to undergo a mini allo transplant. The "mini" is the latest in the allo transplant, which is using stem cells from a donor, in this case one of his brothers. Leukemia patients typically get the allo as they have no cells of their own that can be collected. The allo has a much higher morbidity rate (30%) which is why it is a bit of a last ditch effort. But in Dan's case, his brother is a 100% match for him, and its the new "mini", and he's at MD Anderson, and he is an incredibly optimistic, strong person, with a tremendous support network. So this morning, I'm just feeling a strong yearning to write about Dan and give him all the spiritual support I can muster to get him through this new treatment he is embarking on and all the positive affirmations that he will do incredibly well.

Allos are the only true cure potential MM patients have at the moment. That's not to say that all the other treatment options we all battle with to make decisions about aren't promising and don't offer good outcomes. But the allo, when used, and if successful is by far the best opportunity to put MM firmly behind you. The mini is an effort to do the allo and mitigate the higher overall morbidity rates (from 30 to 10%). It has become a promising future path for those not able to get into a more stable disease presentation.

My thoughts and prayers to Dan and his wonderful family over these next weeks. I'm picturing him on the slopes, swimming, and riding his bike in beautiful Denver for years to come.

GO DAN!

Whatever "journey" you are on in life, you will meet people along the way that however brief the contact, who touch you, inspire you, make you laugh, give you hope, strengthen you... In the journey of Myeloma, which I am more familiar with, but I imagine it is true in other situations, you know that you are going to lose new friends along the way. You get attached and you grieve their loss, or you celebrate their triumph! Either way, was it worth it? I say, absolutely! You can't help but share their joys and their pains, as they do yours. That "look", of knowing its a good day or a rough day. The optimism of a good test result, or meeting with the doctor, the arrival of a loved one while you are far from home. Sharing the joys of someone being "sprung" and getting to go home! We all have a "story", and in them you see bits of your own and with that, there is understanding, hysterical laughter, tears, and most of all HOPE.

Hiccups and the Thorazine Shuffle!

2010-03-18T10:48:00.000-07:00

July 2008

Oh god!

Dave has been having uncontrollable and violent hiccups. We think its tied in with him being so profoundly constipated. But we aren't totally sure, except that when he can have a bowel movement the hiccups seem to go away for a couple days. So we "think" its gas building up with no place to go, but what do we know? Dave has several things working against him. The Myeloma causes constipation, as do the narcotics and the Thalidomide he is on to beat back the Myeloma. Add to that, general inactivity and poor Dave is just like a salmon swimming upstream on this. He is already so annoyed with all the pills he has to take and now he needs to add things to help him go to the bathroom. He keeps wanting to treat it like its and "acute" condition vs. a "chronic" one.

This is where, as a caregiver, and a wife, I get tremendously frustrated and aggravated with Dave. I tell him and tell him and tell him, what is going on, how to address it, how to handle it, and he doesn't do it, does his own thing, and then gets constipated and the hiccups return and we go round and round and round. I finally call Marilyn G., MD, and tell her what's going on and how frustrated I am with all of it. She gets Dave on the phone and "explains", AGAIN, what's going on and why he needs to be proactive and continual in addressing this issue. It works for a couple of days and then he goes back to "hoping" he won't have this problem, and of course does, and so it goes.

After I left for Maryland, my dear friend Jann (who has since passed away, sniff, sniff), was out in California and was spending time with Dave and Hudson. She went to one of the appointments with him (did I mention, I have THE most AMAZING friends!) and Dave tells some lowly office person that he has these violent and uncontrollable hiccups. She gets on the computer and says, "Oh, no problem, we can prescribe Thorazine."

WHOA!!!!!!!!!!!!

THORAZINE!!!!!!!

Thank god Jann was there! She knew, as I knew, that Thorazine was introduced in the 1950's as the miracle anti-psychotic that was dubbed the "Chemical Lobotomy". Geezus! Jann, stepped up and said, "Dave, you absolutely cannot take that!" The poor girl behind the counter was way too young to know this information. She's just punching into the computer and its spitting out the "approved" solution. Jann was calm, but direct with Dave. Of course she called me right away and we were both AGHAST on the phone and I was soooooooo glad she was there at that moment! As I mentioned earlier, I was finding out a lot of things, after the fact, and I have no doubt, Dave would have filled that prescription having no idea what it was originally known for. It was helpful though in getting him to opt for the colace, sienna, warm prune juice, etc.

"Thorazine Shuffle" averted!
but the hiccups remain...

Eventually the hiccups would disappear, though issues with the constipation would continue and Dave's willingness to get ahead of it. So I don't know really, what was causing them. It could have been the Thalidomide. But again, they did disappear while still on the Thalidomide, so who knows with certainty what the cause was. We may have just gotten a better handle on the constipation and we were right all along...

Now do I really think had Dave taken thorazine he would have developed the "Thorazine Shuffle?" Was I simply freaking out about something I knew about this particular drug that was not appropriate? You know what? I don't care. I don't care if someone thinks I'm overreacting or not. It was a continuing EFFORT to educate Dave about health care, drugs, recovery, etc. His world and, arguably, mine, had been turned upside down. He had gone from no pills, to handfuls. He was scared, in pain, frustrated, uneducated, inexperienced, etc. I was 3,000 miles away and we had 27 years of marital baggage to plow through as we tried to deal with all of this.

The upshot of this was, and continued throughout, I felt that Dave needed to be very careful about HOW he was communicating these things to the medicos. If he tells them matter of factly so they know everything that's going on that's one thing. But if when he's telling them he is giving signals that he wants them to "fix it", man, they will, more pills, more prescriptions, more, more, MORE! As someone who has always worked for the simpler, alternative roots to things, this kind of approach is contrary to everything I think and believe. Why would you not take sienna, fibercon, and prune juice (ok I hate prune juice!) to proactively resolve the constipation and thus, the hiccups... but instead, tell the docs, and get a prescription like THORAZINE to handle it. I just can't think with that kind of rationale. And here is the other thing, in case you are wondering... the other stuff DID WORK! He just wouldn't stick with it. I would find every pill out of his box taken EXCEPT the sienna, fibercon, colace, etc. Then he would avoid answering my question about having a BM, and then whine about the hiccups, being constipated, etc. SCREAM! He's protesting, I get it. I really, really do. This is not fun. But I have issues too, and his noncompliance is beating me up and pushing me into a very unsympathetic, sarcastic attitude. (That marital baggage I was alluding too!) Or... is this simply the lessons I am to work on...

(Note: Some had expressed concerns about Dave taking stool softeners long term. I was told that your body can become dependent on them. I spoke to Dr. Marilyn G. about this and was told that is not the case with someone in a position like Dave where he has chemical reasons for the constipation. If he was constipated, but otherwise healthy, and was taking laxatives and softeners, then yes, that could become a problem. But when Dave got off the narcotics and the MM was better under control, he should be able to go back to normal on this... whew...)

There seemed to be a continuing struggle with the juxtaposition of the patient, the caregiver (aka, the wife), and the doctor! I'm not a doctor or a nurse. I struggle with Dave on my credibility and his willingness to take whatever is said by the docs/nurses as gospel. If it supports my view, fine, if it doesn't, then he is less likely to work with me on it. The docs/nurses, rightly stay focused on Dave, the patient. Its extremely frustrating. And yet, I can't lose my temper with him... he is very sick, its not OK for me to unleash my wifely wrath on him. Calm discussion and persuasion is the order of the day, but it is exhausting in terms of the emotional energy it drains from me.

I can't emphasize enough how incredibly valuable my friends have been through this process. Jann was one of several. I was able to fully disclose and unload my difficulties and find sanity in the storm - always with a solution, humor, direction, focus, and always renewed and resolved to keep moving forward and know, without any doubt, we would get through this. The trick was, could we get through it in one piece, undamaged, stronger, better...

...and the beat goes on

2010-03-15T12:03:00.000-07:00

July 3, 2008

"It is so good to have the office come to life again! It felt like a house with a clogged drain on holiday with a lot of visitors, when you were gone... " My wonderful boss' email me to me upon my return.

So I've been home now for about a week. Closed on the house, back to work, packing, strategizing, planning, checking in on Dave and Hudson and on and on. Overwhelm doesn't even seem descriptive enough to describe the pressure I feel at different points in the day. Sometimes, being at work, walking the dog, chatting with a friend is a respite from all that is occurring. Sometimes, it just adds to it all. I've noticed I'm sighing a lot. Its been hard for me to catch up with Dave and Hudson with the 3 hour time difference on a regular basis.

Hudson has been taking Dave to his radiation treatments to help reduce the lesions on his T8, ribs and shoulder and thus give him a bit of relief from the pain. He has no fractures in the ribs which is good. We aren't totally sure he has lesions there either though. We're still struggling with what to ask. Its all so new and difficult to figure out. Its amazing how different and new this all is. And now with me in Maryland I'm not there to ask the questions when things come up. I hear about it all AFTER the fact. Sometimes I lose it and get really frustrated. Poor Hudson, doesn't know what to ask, its not really his job. Dave doesn't know what to ask or sometimes even how to assimilate all the information he does get. This is a whole new experience for him. And not a fun one.

I took care of my mother, Chris Hudson, who had had 5 cancers over 12 years. Each one was a fairly straight forward until the last cancer which was in her liver and then there was nothing presented to us to resolve it that was worth undertaking. She made the decision not do anything as it would afford her some decent quality of life for the months she had left. It was very hard for me, and even harder for my sister, to know that she had made this choice. It was the right choice, but it was still hard. I remember lying in bed the night I knew she was "done" and crying myself to sleep. I woke up with the resolve that it was "her journey". My role was to help her to have whatever experience she determined was best for her. THE HARDEST question I had to ask her in the car on the way home was where she wanted to die. I couldn't quite get it out like that, not that direct. Funny how that is. When I was in a class in college for my humanities credit, "Death and Dying", there was chapter I remember vividly entitled "Death Has Become Pornographic". What it was alluding to was the difficulty we had as a society to discuss death. We give it names, like "passed away", "kicked the bucket", etc. That in the old days when death was more commonplace, we didn't hide it away like we do now. The pornographic analogy was that we don't discuss that either. We know its there, we know its a part of people's lives, but we simply don't have conversations about it. It is a taboo subject for many. Even "knowing" this, it was profoundly difficult to open this line of discussion with my mother without completely falling apart. But I was brave, and with tears trickling down my face as I was driving her home, I asked, "Mom? What do you want to do? I mean, where do you want to be... in the hospital, at your house, my house, hospice?" We had a very tentative and cautious, but open, conversation about it. She wanted to be with me, but she was worried about the children who were 11 & 13 at the time. Then she recounted a personal story that just floored me and that I never knew...

When she was about 5 or 6, her grandmother was dying. They all piled in the car and went to her house. Adults were milling around in and out of the grandmother's bedroom, waiting, keeping vigil. The grandmother dies, they get her body removed from the house by the funeral home and then they put my mother in the grandmother's bed, alone, turn out the light and they all go to bed! My mother had tears running down her face as she was, with great difficulty, telling me this incident in her very young life. I said, "Ohhhhh Mom! That's horrible! You must have been absolutely terrified and frightened!" She only nodded. Then again, with difficulty she expressed her concern for my children and not wanting them to have any kind of experience like that connected to her or to death. I was even more resolved now that she would be with me. "Mom, first of all they aren't that young and secondly, I would never allow them to have an experience like that, you know that right?" She nodded. "Then its settled, you will be with us." (In case you're wondering... my children had an unbelievably enriching experience caring for my mother. For them, now, its as natural as the air you breathe, to care for someone you love.)

Chris (circa mid 1960's)

So my experience with her was a slow decline physically until she died. With Dave, it's one minute he's working, driving to and fro, taking business trips and so on - to WHAM! In the hospital, unable to move without great effort and pain, almost crippled beyond words. I have to help him up, help him put on his clothes, in and out of the bathroom, pretty much everything. With my mother, it was helping her to die, gracefully, painlessly and dignified. With Dave it's about SURVIVAL! Bringing him back from the brink instead of helping to go toward it. Its frightening to see him so profoundly impacted in an instant, much I guess like someone who has had a terrible accident or stroke. Its so abrupt and life changing, it sends you spinning.

Of course, now, I realize just how frightening all of this must have been for Dave. (I had a sense of it when it was occurring, but honestly, it was a luxury I didn't feel I could afford.) He can't get out of bed, he is in tremendous pain, he goes to the hospital by ambulance and he's told he has cancer. I'm sure right at that moment, he thought this is it, its all over, I'm a goner. I can totally appreciate how one could view it that way. My job became more about his mental game than the physical one. I knew he would get treatment, though I had no real idea what that would entail just yet. So for me it was, how do I get Dave from a posture of succumb to one of survive? How do I do this while being understanding and compassionate. How do I say, "COME ON BUCKO! GET WITH THE PROGRAM HERE!" in a soft, quiet, caring way. I'm thinking all of this and I'm torn between being angry AT him, scared FOR him and not even wanting to think about what this could all mean for me and our family. Our future, our lives... and feeling guilty for having ANY of these kinds of thoughts at all! The emotional pressure was incredibly profound.

The Swap!

2010-03-14T09:50:00.000-07:00

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

2010-03-13T12:08:00.000-08:00

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

2010-03-13T11:51:00.000-08:00

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

2010-03-13T10:12:00.000-08:00

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

2010-03-13T09:35:00.000-08:00

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

2010-02-25T09:30:00.000-08:00

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!

2009-11-15T07:56:00.000-08:00

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.

Thalidomide/Dex

2009-07-22T20:08:00.000-07:00

In Little Rock, they simply commence treatment. If however, you are like most of us, and you have a general oncologist treating you at diagnosis, and your doc doesn't refer patients to Little Rock, you are put on some sort of "oral" chemotherapy in the interim before SCT. (Stem Cell Transplant)

Thalidomide is the drug given to women in the 50s for morning sickness that produced a huge number of what became known as "flipper babies". The birth defects were so profound and widespread that the drug was pretty much banned worldwide. Needless to say I was a little taken aback. Dave had no clue, but boy I did. Well it turns out that several years ago, some scientists in Israel started playing around with it and discovered it did some amazing things in the blood cancers. It was one of the huge turning points in the treatment of MM patients. So as long as Dave wasn't getting girls pregnant he was in the clear to use it. Each month he has to answer a questionnaire with some group at the Federal level about his sexual activity. Our doctor apologized, but it was the rules. I laughed and said, "Well, if he gets some girl pregnant, I will be pretty mad. If he gets me pregnant I'll be REALLY MAD!"

Dex, better known as dexamethasone, is a steroid. Dave would have to take this on and off through his treatment regimens. It started out 4x a week and then eventually it became 1x a week. It would make him hyper and he would lose his voice. He became emotional and angry at the drop of hat over perceived wrongs that in reality didn't exist. But we had prepared ourselves and did all we could to suck it up and let it go. It was not easy.

The Thalidomide made him tired and he would take it at night. The dex was like speed, so he would take it in the morning. Dave had a VGPR (Very Good Partial Response) on the Thalidomide/Dex within 30+ days of treatment starting. VGPR is one step below CR which is Complete Remission. Not a bad response at all. We were pleased.

Narcotics Run

2009-07-22T19:31:00.000-07:00

Image via Wikipedia

Wednesday, June 25, 2008

I made my first of many "narcotics runs" to the pharmacy. Each time the pharmacist would want to meet with me. Each time, I would explain that I understood that he had "other" narcotics and that we needed to be careful, and so on and so on. I had taken care of my mother in her last days, I was well aware of the need to be careful and understand what we were doing... self medicating. Sometimes I had a question, like how to wean him off one as I put him on another and so on. But for the most part it was just another thing I had to endure.

Dave and I had NEVER, EVER taken drugs of this magnitude, nor frequency, nor volume. In our 27 year marriage we had never been sick nor satisfied our family deductible on our health insurance. We never bought a prescription plan because the most we spent was $100/year on someone in our family of 4 needing an antibiotic.

Suddenly overnight, the drug management became the focal point of our day, and rarely only once a day. Constant checking and rechecking.

David was not a good patient. Not because he was being noncompliant, although there certainly was protesting going on, and understandably so, but because he had no experience with being ill. Each administering of his drugs, if he didn't do it himself, was a quiz on each and every pill. Why? Are you sure? Do I HAVE to take this one? What does this one do? Did you mark it off the list? Which one is this? The last question was probably the most exasperating for me. Once I took them all out of the bottles and laid them out, I didn't remember which ones where which for cryin' out loud! He wouldn't take them unless he knew. It became exhausting, day after day, 3x a day.

There were the pills he was supposed to take, then there were the pills he "could" take as needed. Getting him to take the "as needed" pills became a problem, particularly the prophylactic (taken to prevent something undesirable that was most likely to occur) ones. Those were where tremendous frustration would occur for both of us. He wouldn't want to take pills and concoctions for constipation caused by the disease, the morphine and the cancer meds (he had a triple whammy), until he BECAME constipated. This of course made no sense whatsoever to me, because he WOULD BE constipated. How could he not be? It was impossible. If he waited until it was a problem, then like the pain, we were chasing it down and it was brutal and would start all over again with him not wanting to take them, wait and see, as if somehow now he would no longer be constipated.

He would also take each pill, one at a time. Oh yes, let's just prolong the agony here...

The other thing Dave would have trouble with was articulating exactly what was going on, so that I could better assess the situation and prescribe, from our now growing drug supply, what I should give him.

Dave: "My stomach hurts."

Lori: "Oh, I'm sorry. How does it hurt?"

Dave: "It just hurts."

Lori: "Pain or cramps?"

Dave: "Ummm, I guess pain."

Lori: "When did it start?"

Dave: "Its been going on for a couple days now."

Lori: "Couple of days!"

Lori: "Ok. Do you feel nauseous?"

Dave: "No. But I threw up last night."

Lori: "Geeze Dave. When were you going to tell me that!"

And so it would go... This went on for months. I got smarter about my 20 sleuthing questions and Dave got better at describing more precisely what was occurring. It was an evolution to be sure. He was just so behind the learning curve and it was not a learning curve he ever wanted to master. He just wanted it all to go away. The pills, the pain, the cancer...

Who can blame him.

At one point I would describe to people just how many prescriptions we had as being more than all of our 90+ year old grandparents, in their entire lifetimes, combined! (We had 6 grandparents between us who all lived over 90.) The last time we went to Little Rock, I had to pack a small suitcase just for all the prescriptions, past and present, in the event we would need them.

The First Marital Unpleasantness

2009-07-16T19:48:00.000-07:00

An entry from the Caring Bridge:

THURSDAY, JUNE 26, 2008 6:26 PM, CDT

Oh man! Well we went for the radiation treatment for Dave's ribs and we got hit with a bunch of stuff that needs to be done for his treatment to start on Monday for the Myeloma. The upshot is that it was my first moment of frustration and anger given that I'm leaving tomorrow. Anyway, we got it all sorted out and taken care of and then Dave confessed he didn't want me to leave yet, so I've rearranged my flight to leave on Sunday AFTER Hudson gets here. This will allow me to "hat" him up on everything and get the two of them situated before I leave. Dave felt much better about this new plan. So my packing party was cancelled until the following weekend.

Thanks for the messages. We REALLY enjoy reading them!

Love, Lori

PS Some of you have contacted me "worried" that I'm delaying my departure. Its really nothing to worry about. Dave is just still adjusting to all this and the meds and everything and he was wanting me to stay longer. Its totally understandable and totally fine. No big deal. Please don't worry. The upsetting stuff today was just a bunch of paperwork to start the cancer treatment and we weren't prepared for it. Once they knew the scene, 3 staff overcame all barriers to make it possible for Dave to start his treatment as scheduled on Monday.

This was such a weird experience. Dave and I had been doing great and bumping along just fine and then we head into the Cancer Center for the first time and were bombarded with people and paperwork and it was overwhelming. I kept saying, "But I'm leaving tomorrow! I can't get all this done by..." Evidently as we figured out later, every time I said, "But I'm leaving tomorrow!" Dave got more and more agitated. We were not a pretty picture. We were snippy and angry and we really didn't understand why, it was downright embarrassing! We didn't make a very good impression. Once we got out of there and had a chance to talk, Dave was able to articulate his frustration that I was leaving. He also had lost track of time and didn't realize I had to "close" on the Brookeville House on Monday! So the compromise was for me to wait a day for Hudson to get there, so Dave wasn't alone and vulnerable. This would be the beginning of many such marital episodes on this journey. As one wonderful Myeloma patient, Bart from Tennesee said to me in LR (Little Rock), "Yeah, it TESTS ya!"

The Other Child & The 2nd Mom - Montana & Judi

2009-07-16T03:15:00.000-07:00

Normally, Montana is front and center. She is our second child and 2.5 years younger than Hudson. She wanted to help. Of course. She had a full time job as a pool manager and a summer diving coach. She was also still competing in the summer league (Montgomery County Diving League) with her last year of eligibility (and I missed THE WHOLE SEASON!). In addition to that, she was practicing with her coach, Anton Slobounov, at the University of Maryland. She is an organized, time manager kinda gal - clearly. She set about finding a place to live for her and her brother in the fall.

She remained calm, attentive and focused on the tasks I gave her to do, which was essentially, "... take care of getting you and Hudson squared around and continue doing all the things you have going on."

She, like Hudson, stepped up and grew up. She was amazing. She was 19. It had its price. We, she and I, weren't completely ready for this separation. I knew she could handle it and I knew she "wanted" it, but on her terms, which this clearly was not. It was a struggle for both of us. And, yet again, my friends stepped up. Judi (Russell's wife) and one of my closest friends and "California Buddy", assured her that she would be there for her and Hudson. Jude went to Montana's meets, she went to the family opening BBQ for the UMD team. Judi went to the end of Montana's summer diving career banquet and awards. Montana told me she just would introduce Judi as her Mom because she got tired of explaining it. Judi of course was wonderful and she would explain she was really the "2nd Mom". Marlene Powell was one of mine - I had a few. I couldn't have made it as well without mine and I was thrilled that Montana had hers. Judi was always marvelous about calling me and telling me all about the wonderful things she was doing and goings on. Besides enjoying someone bragging on my children, I appreciated knowing that they were really doing great throughout this whole year.

We each had a "job", we were part of a team, a family, but we were each doing our task, very much alone, separate from each other, in solitude. We all stood tall, stayed focused, didn't whine, didn't demand of each other anything that wasn't absolutely necessary. It was a time that is both extremely painful for me but also one where I am immensely proud. We sucked it up.

scri6y9me4

2009-07-15T19:18:00.000-07:00

Please ignore this, its done in order to get the blog on Technorati, a search site, to help promote it.

scri6y9me4

Dr. Creep

2009-07-14T19:08:00.001-07:00

June 23 & 24, 2008

So I called Diane and got the skinny on Dr. Creep. I discovered he is not well thought of by the staff or colleagues, but "he's much better now." Oh God! I felt better though having been validated about my instincts. This further spurred my desire to get Dave out of there. However, I LOVED Rideout Hospital and I will talk about that a little later.

I did manage to get my displeasure across to Dr. Creep the next day. I was speaking to a coordinating nurse/social worker who was going to help us make sure we had everything we needed to go home and be safe. I was out on the floor at the station and she and I were talking. Dr. Creep, walked up and actually interrupted our conversation! I mean, "Hey, I'm a customer A%$#@E! and she is doing her job, and YOU are interrupting!" So, I turned my head slightly as if to say "oh its just you" with a perfunctory cursory glance (at that point he took a step back and away), turned my back on him and stepped between him and the nurse just slightly and subtly, and said, "We can finish this up later, thank you so much for all your help and support." I turned around without acknowledging him in anyway, but his body language said it all. I had just launched a BIG BAZOOKA! He never showed up in Dave's room again.

JERK!

BIG JERK!

BIG, HARRY, UGLY, JERK!

Dr. Humble & Dr. Creep

2009-07-14T18:33:00.000-07:00

Monday, June 23, 2008 (evening)

Before we left Rideout, we had a couple of visits from doctors. Dave came through the emergency room and was admitted and it wasn't until the following day that the Oncologist, Dr. N, became involved. Of course I wasn't there, so I didn't know these guys. But one evening the Emergency Room doctor stopped in to see Dave. He was so happy to see that he was comfortable. Dave had been in so much pain the ER, and this poor doctor was desperately trying to ascertain the problem. I liked him. I validated him. He said, "I didn't do anything." I said, "Yes, yes you did. You could have just as easily sent him home with pain meds for his 'back' problem. But you didn't, you ordered the chest CT. Good job!" He was very unassuming, kind and humble.

Then the weirdest thing happened late one evening. I was still at the hospital and it was past 11pm. I was kind of tucked behind the curtain in the room, all he lights were out except a reading light, and this doctor walks in and stands at the end of Dave's bed and then is startled to see me sitting there. It was strange to me. I introduced myself and got a very wimpy handshake, like it was forced and unwanted. The hair on the back of my neck stood on end. I had a bad feeling...

This was the admitting physician when Dave came into the hospital from the ER. He started to have a conversation with Dave that went something like this..."So, well, I would never have pegged you for Myleoma, not in a million years. What will you do now?" Dave looked at him, as did I, like, "What do you mean?" Dave finally actually said that. The doc said, "Well, I mean you have Myeloma. If it were me, I would go back to Maryland. I would want to be with my family." The way he said it was so encrypted though... we were both struggling with this feeling of what is he really saying. I said, "What family? We're not FROM Maryland. We lived there a long time, but we aren't FROM there." He said, "OH! Well, I mean, well, where is your family?" I respond, "We have family all over the US and our children are in College." He says, "So I guess you really can't go back, I mean your job, your health insurance, wow, that's too bad. Well, why don't you go to Stanford for treatment then?" We are like, "Why, we have UC Davis here, they do treatment?" He says with a dismissive, derisive tone, "Well, I mean, well, Dr. N is in charge of your ship now!" (Ohhhh, he doesn't like Dr. N!)

He left. Dave looked pale. I was angry. I had finally gotten Dave in an optimistic frame of mine with a Cancer Diagnosis (with a lot of help mind you!) and this guy comes along and made him feel like, he should rethink his life because he's going to die. Now, remember, at this point, we still didn't know that MM had a short life expectancy (except that isn't true anymore). So he was taking the outdated point of view, but we didn't know there was any other point of view but the one we had, which was a full recovery. Dave was falling apart right before my eyes and I wanted to go out there and string the guy up from a beam right there. But instead I decided not to waste my time with this guy, nor give him any power or attention whatsoever. I stayed focused on Dave. We talked on the phone while I drove home and into the night. I got him out of the mental hole he was slipping into. I didn't get him back completely to where he was, but he didn't slip away into that dark horrible void of being totally defeated. With Dave, its a head game. I was struggling to get his head in the game. He's an athlete, he's a coach, he knows the deal, but right now, he was none of those things. He was a guy that just found out he had cancer and he was scared, he was acting like he had already lost. I was very angry and very scared, but right now, I was Dave's cheerleader, I had to get him in the race and Dr. Creep just really screwed with his head!

More Logistics - Incredible Friends & Neighbors

2009-07-14T17:34:00.000-07:00

While all this is going on on the West Coast, I learned that my incredible friends and neighbors were rallying around and organizing a "packing" schedule. When I got home I had troops of friends all doing something and coming over here and there to help me pack 27 years of CRAP for the movers. The more I packed, the more money I saved, we had a cap on our relo package and we desperately needed to do as much ourselves as we could to get under the cap. We had it all planned of course and then I was in California dealing with Dave, instead of at home dealing with the packing, which Dave was going to be helping with.

One of the things that is hard for "able" people to learn how to do is ALLOW others to help. We are the helpers, we don't need help. Fortunately, in caring for my mother I learned how to let things go and accept assistance. But for those of you ABLE folks who suddenly find yourself in this medical crisis, and you aren't used to letting people help you, suck it up! Learn fast, on the fly. Its not going to be perfect and it won't be the way you would do it, SO WHAT! Its help and you have to take a different point of view. I can manage dammit, so that's what I did. I directed and organized things so that others could do it. Whatever they did would be well meaning and have to suffice. At least it would get to the other end and I would deal with it there. You know what? They did a FANTASTIC job. All of them. The boxes made sense, they were labeled and I had very little if any breakage. I couldn't have done it without them, no way, no how. Well, maybe I could of, but I probably would have ended up in a funny farm.

Good people want to help. Let them. You would do it for them right? Well let them do it for you. Its a universal exchange. I have helped people my whole life. Its what my family always did, I learned it. Its second nature. Now it was time for me to cash in and the trick is to recognize that and then accept it, graciously and gratefully.

The Great Escape!

2009-07-14T17:21:00.000-07:00

Its a Tuesday, the 24th of June. Dave has been in the hospital almost a week now. He is desperate to get out and I'm desperate to not be sitting in a hard chair all day long, but... the pain is really tough. He is having a hard time emotionally taking all these pain meds and they aren't really handling all his pain. He's tired of feeling lethargic and in a drug haze. He's never been sick before, he's never been in the hospital or had to take pain meds. He's an inexperienced patient - very inexperienced. Whenever the nurses ask what his pain in on a 1-10 scale the HIGHEST number he ever gave was a 4. Now he does this while grimacing and writhing in pain. Dan was there one time and said, "LOOK! He's a 10! He's totally lying!" We all laughed. I later learned that all the nurses were adding +3 to whatever number he gave because the numbers were so low they wouldn't even qualify for them to give him anything. It became the joke on the ward. But in reality, Dave kept thinking the pain would go away, so he preferred to wait to see if he was still in pain. This is not the kind of situation where you do that, but he just didn't know. He found himself constantly in the position of what is often called, "chasing the pain". It is not desirable or advised. It made it hard for me too. Here all my life I was a non drug, natural remedy kind of person and I've turned into a drug pusher. Then he was worried about getting addicted. I finally had to break it to him. "You are going to get addicted. But you are not of an addict mind and we will deal with that issue later. Your doctor will help us with that. Please Dave, you can't be in this kind of pain all the time." He was emotional. We both were. This was just terrible.

So we wanted to break out, but Dave wasn't sure he could manage the pain at home on his own. The doctor said he could leave when he wanted. Dave decided we could manage and he was tired of snorting, snoring, farting, rambunctious roommates that kept him all night along with the early morning blood suckers who wake him up to take blood. We decide, we're going. I tell the nurses and they are like deer caught in the headlights. Oh crap, paperwork! I stand firm, "I'm sure you can make it happen." Around 7 pm that night we break out! Its a slow, slow, slow process to physically get Dave out of the hospital and in the car, but we did it. It felt fabulous.

Later on that night as I laid down in Dan & Sarah's beautiful guest room, where Dave had been living for 6 months, I was comforted to be laying next to my husband of 26+ years. We hadn't slept in the same bed but a couple of times while he was away and this crisis brought a lot of emotions. As I laid next to him, it was so comforting to just be gently snuggled up against him while he slept. It was intoxicating and overwhelming actually.

Somehow, we'll be OK. We always are...

Shocking!

2009-07-14T16:44:00.000-07:00

Looking back now what is so shocking about Myeloma at this time in our journey, was how Dave was working, driving, flying and living his life and then WHAM! He is knocked on his preverbal ass in an instant and can hardly get out of bed. I have to dress him and help him with a shower... I mean, shoot! With my mother in her last cancer which took her life, it was a slow and gradual, gradient decline... This was WAY DIFFERENT. This was like Dave had been in a terrible accident or something and we had to get him back to normal somehow and that would be the road. But it wasn't an "accident". I remember when I helped him step over the 3" tile lip in the hospital bathroom shower, and found something for him to hold on to while I put his dressing gown back on him and his PJ bottoms, I said, as I'm snapping up the back,

"Dave?"

"Yeah?"

"We are way too young for me to be doing this."

"Yeah."

"Ok, turn around, put your arm around my shoulders. Are you steady?"

"Yeah"

"Ok, let's get you back in bed, take it easy, take your time..."

Later...MUCH LATER...we learned that Dave had a compression fracture in his spine at T8 or T9, I don't remember which one. Holy Crap!

"Logistics Lori" on the War Path

2009-07-14T09:11:00.000-07:00

One of the things I have always been really good at is lining up all the things that need to get done and organizing it in a logical manner with tight scheduling and make it happen.

I still had a job! I had left abruptly while my boss was out of town, I needed to get back. We were to close on the house on Monday, June 30th (a week away). Dave was supposed to be home to do that, help me pack (the movers were coming on July 7th) and have our going away party at Gail's house next door. The original plan didn't have me coming out to California until early August! I was going to help find my replacement, train her and take a trip to Egypt with my wonderful friend Paula. (Paula's parents befriended my parents when they were newly married in Louisiana and Paula was my first baby sitter when I was born. She was 9. Before my mother died, she made sure we were connected up. Her parents were long since deceased and my mom wanted us to "have each other". Paula has a wonderful, modest Throughbred and American Saddle Bred horse farm near Lexington, Kentucky and works for Lane's End (a huge horse farm) and Keeneland Race Track. I go there once a year after the world famous Keeneland Horse Sale and we have come to love each other very much. Thank You Mom!)

Anyway, she had been invited to Egypt and invited me to go along. I have never been off this rock and was so excited to be "traveling abroad". This trip was to occur after the move, while I was still in Maryland. I would go for my two week vacation, come back, check in on the new gal and then head out in the car with Kip to California. I would deal with this all a little later.

Right now, Dave could hardly walk or sit and he certainly couldn't drive or take care of himself at Dan & Sarah's all day. He needed someone full time to be there for him and drive him back and forth for radiation. It couldn't be me, even if I wanted it to be. The wheels were turning on what to do and the pieces were falling into place.

The hospital Social Worker had already stopped into meet me (remember I had called the hospital the first night and made sure that they all knew I was coming and needed their help!). I told him we needed a notary to get me Power of Attorney so I could fly home and close on our Brookeville home with the new buyers on the 30th. My wonderful, best ever, realtor, Marsha Crowley had already fax'd the necessary forms to Sarah at work and Sarah brought them to the hospital. The Social Worker said, "No problem. I have a good friend and pastor who does that. I'll call him." The next evening this pastor and his wife came to the hospital and filled out all the paperwork and prayed with us. We overnighted them the next day to Marsha.

Monday, June 23, 2008

I called our son, who had just finished up the semester at Maryland and didn't have a job lined up.

"Hudson"

"Yeah Mom, what's up?"

"Here's the situation...."

"So, can you fly out here in a couple of days and take care of your Dad for me so I can get back home and take care of stuff there?"

"Emmm....yeah, I just need some time to move out and get my stuff in storage."

"Oh Hudson, that's great!"

Ok, that's done! He flew in on Saturday and I flew home on Sunday, just in time to close on the house Monday morning. The child becomes the man...

A note today from what of my buddies in the UK at WhatNow..."I've read some of your blog which is absolutely fantastic; extremely genuine and well-written so please do carry on with it, I agree it will be a different thing to the Caring Bridge one as it is from your personal perspective."

Not Unique

2009-07-13T23:22:00.000-07:00

As I'm working on this Blog, this chronicle, this "story", I am keenly aware that neither I, nor Dave, or this experience is unique. Its important that I let you know that I know that. While our personal experience, and the cathartic writing it all down and sharing it is a very self absorbing activity, I am keenly aware that it is not unique. But for someone who has just been thrust into this situation I hope you can find solace in knowing you are not alone. If you can have a realization or two, or forgive yourself, laugh out loud, or cry - with me. I think its a good thing.

You can do this. Be brave, have courage, you WILL come out the other side, somehow, but only if you keep moving forward.

"If you are going through hell, keep going." - Winston Churchill

I received an email from a fellow MM Caregiver today commenting on this latest endeavor (the blog) and she said, "... it sounds like you certainly have had some amazing people with you along the way helping you through." She is completely right, I have had the most wonderful friends, family and complete strangers help me get through...

Radiation, T8 & T9 "Involvement"

2009-07-13T21:31:00.000-07:00

What the hell does T8 & T9 "Involvement" mean? All we knew was Dave had "lesions" on his spine and shoulder. Ok, so this explains the pain I guess. The solution was to handle it with radiation. Ok. Dave couldn't move, so an ambulance had to come to his room, get him from the bed to the gurney. This was harrowing. Seriously. Dave could hardly move. He was urinating in a jug to avoid getting out of bed. Watching him trying to get out of the bed and onto this gurney was painful and stressful. What happened! What happened to my Dave! Holy crap! Fussing around now with elevating his torso so that he could be wheeled out of the hospital was another 5 minutes as he was in so much pain. All of this so they could drive him .9 miles to the cancer center across the street to the tune of $1,000 for each trip and we had to do this for days! A simple skywalk would have done the trick and been a whole lot less than $1,000! Good grief! I know many of you understand how awful you feel when your loved one is sick and suffering and coupled with all of that is the COST! You feel sleezy to even have such thoughts, but they are there, they are the reality.

The good news, after the very first radiation treatment Dave could WALK on his own to the bathroom. He got up and shaved and brushed his teeth. It took a lot out of him, but he did it!

So we got 2 days of that and then they are closed for the weekend. That stinks. Slowly but surely his pain and muscle spasms returned over the weekend, not too mention we were BORED out of our gourds! By Monday he was begging for, yep, RADIATION! MORE RADIATION! Sad when you think about it. But it brought him such immediate relief.

Little did we know that this wonderful radiation would cause potential problems later with his stem cell collection...

Mack Truck

2009-07-13T21:21:00.000-07:00

One of my CB entries early on...

Monday, June 23, 2008 - Whew Folks! What a week. From Monday morning when Dave couldn't get out of bed and missed his trip to Las Vegas, to Monday evening being told after a chest cat scan that he had metastatic cancer of the spine, to finding out en-route through Las Vegas on my way to Marysville that he had Myeloma, to finding out on Friday morning the "Great News" from his Oncologist, that he would make a FULL RECOVERY. It was at that point that I felt run over by a Mack Truck. Just such intense emotion. Telling his parents who were devasted, his brother, our children, our friends, getting some of our medical people in Maryland involved, etc. Dave is doing really great now. Has a great attitude is responding unbelievably well to the two radiation treatments he has had. He was cranky this weekend because he wasn't getting anymore treatments (M-F is all they do). So I was teasing him that now that he knows he's going to LIVE, he's being mean to me! :) He had a really great day today, very relaxing, pain under control, two walks around the hospital floor, showered and shaved. Warm Prune Juice for you know what, and yes, he was successful! :) Tomorrow we have lots of questions for Dr. Nguyen, his Oncologist from UC Davis about exactly what treatment he is getting, what is the timeline of all of this, whether he has any restrictions, how to manage the pain when he leaves the hospital, etc. I'll report more tomorrow. Imagine Dave whizzing down PCH (Pacific Coast Highway) on his new motorcycle in a few months! Love Lori

We didn't know at the time that Multiple Myeloma was more often than not a terminal disease. We had no clue. Our doc gave us no indication of the history of this disease. Later on as we learned of it, it was like being run over all over again. But we had conflicting data... sorting it all out became part of this story. All of it fell on me. Researching and withholding from Dave all the bad stuff about this disease in terms of life expectancy. I needed time to reconcile what we had been told vs. what I was reading... this just can't be happening.

Caring Bridge

2009-07-13T19:31:00.000-07:00

I knew about Caring Bridge (if you don't, you should check it out) from friends of a teenager who had been in a car accident. It is a wonderful tool that allows you, in seconds to set up a website and tell everyone what is going on and then make "Journal" entries that friends and family can subscribe to. Guests can leave encouraging words in the "Guestbook" and you can put up some pictures. Caring Bridge is a "private" concern. If you use it, no one can search on the net and find you or your situation. It allows you to notify everyone about it and then they have the link and can visit or subscribe.

Sunday, June 22, 2008

I hesitated. I didn't know how Dave would feel about it. Midnight, a few days after I arrived, I was feeling pretty rung out and my cell phone battery was dying regularly from overuse. I had received many wonderful calls and had many to make. Going over it again and again was exhausting, though I was willing. Some had called with completely wrong information, 3rd and 4th hand. I really wanted a way to give everyone one source of information on what was going on with Dave, and me. So I plunged in and set it up. I sent out the link to everyone in my address book and by the next morning when I woke up there was about 60 "hits" and many messages. By the time I got to the hospital an hour later and asked Dave if he had gotten my email about his website, he looked at me funny (NO!). So I pulled it up while explaining to him what it was, and he was way over 100 hits! When I showed him the hits from midnight and the guestbook entries, he was clearly moved and emotional. Whew! He wasn't angry.

It was a godsend. I was able to keep everyone up to date, blow by blow, how we were doing. People would contact me to take care of something that they could see I needed from the site. The messages were wonderful, his family was beginning to chime in from all over the country. We were hearing from so many, it was uplifting and strengthening beyond words. I now was able to talk to people about other more important things that needed addressing, while still hearing from friends and family without spending the majority of our conversation on Dave's Cancer situation. It was great.

As time wore on and the crisis began to subside a little, or I should say, the lulls between the activity, I would get emails from friends "LORI! Why have you made an entry in two days? Is everything OK?" I was like, "Really? Do you guys really want to hear about the banalities of our day?" When things are not going on cancer wise, did they really want to know that I found a cool new store in Elk Grove, or something in a box I had been looking for? I received a flurry of emails "YES!" Later on, when complete strangers were following the website (because I had posted it on some public spaces) they too would get concerned if I didn't put something every day or couple of days. I was incredulous, but buoyed by it all.

It was also helpful when someone would re-enter my life and I would have to tell them about Dave. I would fill them in briefly and then say, "Oh, you know, you can read about the whole sorted saga on his CB site." That way I didn't have to try to condense the whole deal in an email or a phone conversation.

Caring Bridge became a part of my day. The guest book entries slowed to a trickle, but the hits keep climbing and are almost 17,000 now.

It has been an amazing internet tool and I highly recommend it should you find yourself in a similar situation.

Marilyn saves the day - again

2009-07-12T21:22:00.000-07:00

Wednesday, June 18, 2008 (late afternoon)

After my conversation with Dave's parents, I called Marilyn back and asked her to call them for me. She knows them and she knew Dave's mother would take it very hard. She, like me, also knew, that Dave needed full support, infused with complete optimism and confidence in his recovery process.

She felt very strongly that Dave's parents would be more helpful if they did not come out to California, but waited and helped us with the move and the Stem Cell Transplant recovery.

She called them. As a physician she was able to answer their questions with authority and give them sincere hope and optimism, advice and guidance. It was such a load lifted off my shoulders, it was another one of those immeasurable things.

The truth was, I was staying with friends, and spending long days at the hospital sitting in a hard chair next to Dave's bed. There was no point in them coming now. There were things that we really needed help with and that wasn't one of them.

I called them daily from that point on and gave them reports.

Calling the Folks...

2009-07-12T21:06:00.001-07:00

Wednesday, June 18, 2008 (late afternoon)

We now knew what Dave had. It was Cancer. Multiple Myeloma. I learned it was a blood cancer. In the same family as Leukemia and Lymphoma. I later learned it was an "orphan disease", comprising only 1% of all diagnosed Cancers and 14% of the blood cancers. Dave would begin treatment immediately with a pill. We later learned it was considered "chemo", more precisely, "oral chemo". At the time we were like, "whew! no chemo!" Ignorance is bliss.

Ok, so back to his parents. They live in Florida, retired. Dave's mother is a consummate worrier. She'll worry about things no one else would give a thought too. She is fearful, anxious, and always thinks the worst. Dave's father is a bit more grounded, but he, although stoic and seemingly to have command of most situations, is a softy and has been known to be emotional. Both are "doers" though and will work through their issues and "help". However, I wasn't looking forward to this conversation. Honestly, I had enough to deal with, with Dave. I just didn't know if I could take anyone else's issues right now. But they needed to know and I already felt horrible that we had waited, but again, I felt confident that since we didn't know anything, it was better to wait. Now we knew and we needed to tell them. There was no reasonable justification to delay any further, it needed to be done.

Surprisingly, Dave was stalling. I was really taken aback actually. I wasn't expecting him to not want to tell them. I thought honestly he was just waiting, sanely, until we knew something certain, and that I was there with him so we could tell them together over the phone. So both criteria had been met and he was stalling. "No, not yet, their eating dinner now." "No, let's wait until we are done eating dinner." Etc., etc. After about an hour I said, "Dave, you're stalling. We need to call them. I'm going to call them right now. I'll tell them and then you can talk to them." GULP.

I had just had a lengthy phone conversation with Dave's mother night before last and didn't tell her I was going to California. She had tried to reach Dave and assumed he was busy on his Las Vegas business trip. I agreed that he was probably busy. All the while, I know he's in a hospital room in California with preliminary diagnosis of cancer. It was a very hard conversation for me. As I mentioned earlier, I'm an open book, a high disclosure kind of person. Its not in my character to withhold such things.

I get them both on the phone, of course they know something is wrong right away in that request. There is no other way to do it. I tell them I'm in California and Dave is in the hospital. He's OK I say, right away. But...

There is silence on the phone from his mother the entire time I'm talking. Not a word. His Dad was engaged and asking questions, talking and listening. I did my best to instill my optimism on how things would ultimately turn out. But I knew, for his mother, there was absolutely nothing I could say or do to calm her fears. I was helpless. I handed the phone to Dave.

He cried. It was short. It was hard. It totally SUCKED. It was done.

Marilyn G, MD - Dear Friend

2009-07-12T20:48:00.000-07:00

Wednesday, June 18, 2008 (afternoon)

While I was getting a bite, changing clothes, picking up Dave's car, I get a phone call from a dear, dear friend, Marilyn G, MD, Internal Medicine Extraordinaire! Hudson, our son, had driven over to her house and told her what was going on. Her son, Taylor and Hudson went to pre-school together since they were 3 years old. She wanted me to know, that "Myeloma is no longer a death sentence! Dave can beat this! Tell me what you know..." We had a great conversation, and I said, "Marilyn, I would LOVE to talk to you more, but YOU really need to call Dave, NOW. He's a mess, he's not taking this well. He needs to hear YOU and all that you are telling me." I gave her the number and we hung up.

Thank God for Marilyn. She was incredibly helpful and supportive and was often someone I called for a "sanity check" during this whole ordeal.

She made Dave promise NOT to go out on the Internet searching for information (which he was already doing of course!) She told him she would do some up to date research for him and extrapolate the data and call him tomorrow. He agreed.

Rideout Memorial Hospital - Marysville, CA

2009-07-12T19:57:00.000-07:00

Wednesday, June 18, 2008

My dear friend from my teenage days, Carmen, insisted on picking me up at the airport. Carmen and I go way back to when we were 15 years old. Her Dad and my Mom dated, that's how we met. We have kept close in touch all these years and she stayed with me in 2001 when she decided to give Washington, DC a go. She was trying to get work on the Hill when 9/11 happened and everything shut down. My mother was at my home with hospice care and Carmen was a gift from Heaven. She and my mother were very close. To have someone in my home caring for my mother besides me, that my Mom was comfortable with, had value beyond measure. It was one of those "meant to be" kind of things. I mean, for 20 years Carmen wanted to come back East and work in DC and she picks this time in our lives to finally make the trip and my mother is dying of Cancer. How amazing is that? Needless to say, we have journeyed together through some difficult moments and are forever changed by it, and hold each other in very high regard. It was comforting to have her picking me up, my dear friend.

I arrived at the hospital and as I was coming down the hallway, when one of the Powell's stepped out into the hall and saw me. I can't remember who it was, but they hollered into the room, "SHE's HERE! SHE's HERE!" With that they all came out into the hall, Marlene, Diane, Linda, Dan & Sarah and there were A LOT of tears. When I stepped into the room, Dave began to cry. I realized very profoundly at that moment, the stress, tension and burden that my dear friends were all carrying. It was very heavy on them. I had no idea, but of course, they probably didn't fully realize it either until the hat was passed off. The relief.

Marlene and my mother were best friends in a group of very close SR-71 wives. Her husband Bob was also a U2 pilot before coming to Beale. I went to school with Dan, he was my "obnoxious adopted brother" and Diane and I were great friends, while Linda and my sister Lynn, have been best friends forever. They had taken on the role of taking care of Dave, like "family" friends do. Dave was never left alone the entire time from his trip to the hospital, until I arrived. Before my arrival they were stoic, strong, calm and doing everything they could to keep Dave on an emotional even keel. They were in a word, "amazing." Diane, had worked at Rideout Hospital and so did a good job of making sure everyone knew who Dave was and that I knew he was getting good care. She was invaluable. I think they all went home and slept for 3 days after I got there. Can't say I blame them.

After a bit, we decided Carmen would take me back to Dan & Sarah's, I would change clothes, get something to eat, and get Dave's car. Suddenly I'm in my "home town" after over 30 years, running back and forth from Yuba City to Marysville, seeing some familiar things along the way as I'm racing back to the hospital.

We desperately need to call his parents...

Vegas - Plane Change - "Stupid" Fog

2009-07-12T19:49:00.000-07:00

Wednesday, June 18, 2008

As you know from my earlier post, that I got the definitive diagnosis on Dave when I landed in Vegas from my dear friend Jude. Dave has the "easiest" form of Myeloma to treat and he is expected him to have a "full recovery". Whew! Whatever the hell all this means. I only know that Myeloma is some sort of "blood cancer." That's all I really was able to comprehend of the conversation. Those of you who have been there, totally get it. You are in a "stupid" fog, no matter how smart or able you are, you just don't hear it all. You don't hear much after "Cancer" is uttered, it's pretty weird actually.

I haven't even arrived and I'm feeling tired.

Preparing for Cali

2009-07-12T17:17:00.000-07:00

June 16, 17 & 18, 2008

As with many things in our lives, initially Dave was, "I'm fine. You don't need to come. Let's wait and see..." I hesitantly go off to work the next morning and within about 30 minutes, I have secured a flight, and started making arrangements to get out there the following day. Carmen graciously and with insistence is picking me up at the airport.

I've called Dave, "I'm coming tomorrow."

What to do now...I tell a couple of key people at work and then and only then, do I feel the stoic genes of my grandmother, beginning to crumble around the edges. No problem, they say, you go, we'll take care of things here, let us know Lori, keep us posted. All the usual things wonderful people say at a time like that. What else is there? I mean, we don't even know he has Multiple Myeloma yet, we just know they have said, "CAN-cer!" It can't be. He's been fine, a little tired, his shoulder had been hurting him - but he was moving boxes, his back has been bothering him - but he was moving boxes. He had a physical in November 07 - all was fine, he had kidney stones in January 09, but when he got kidney stones in April 09 again, I began, I now recall, to get a little suspicious...but I was busy taking care of things, working, the house, house hunting, etc... HOLY SHIT DAVE HAS CANCER! It can't be, its a mistake, but something isn't right, but its all a mistake, it can't be cancer. The oncologist will straighten it all out tomorrow and I'll have flown out for naught...

I call Jude and we talk. Like me, she is strong and certain we will get to the bottom of this "mess" in short order. No let's not tell the kids just yet, or Dave's parents, we don't really have anything to tell them. All we have is a dx we don't believe is correct (we were right, it wasn't metastatic cancer of the spine as we were told), but we know something is wrong, but we don't know what. Why get everyone all worked up and worrying, thinking the worst, until we know what we are dealing with. Ok. Agreed.

The following day, Montana (my daughter) comes home and we sit on the back stoop and I tell her, Dad's in the hospital and we aren't sure what's wrong. I'm flying out there tomorrow. I don't want you to worry. She presses, I tell her everything I know, and everything I think. She is strong and like Jude and I, her sense is, the same, something's wrong, but its not metastatic cancer of the spine. She believes her Dad will be OK. She's fine. Now I have to tell Hudson so I call him on the phone. He's quiet. Keep him posted.

I go to my neighbor Gail to have her take Kip (our beloved Lab). I lose it. I'm crying now. I'm a mess. She's crying. Gail and I do that to each other. We blubber like babies and spur the other one on. Its comforting though. Gail has been my good friend and neighbor for the past 9+ years and we have a lot of history together. She's very dear to me.

Russell (Jude's husband and my pretend "boyfriend") drives me to the airport (BWI) the next morning, door to door service. Jude has made me a lunch to take on the plane with strict orders to make sure I eat and stay nourished.

I'm in the air. Small talk with the passenger next to me, as usual. I'm light and keep the conversation on them. You see, I'm a very OPEN, high disclosure kind of person. I always have been, can't seem to help myself. Its one of my more endearing qualities. But this is just not the time. My trip is OK, but I feel a bit like a deer caught in the headlights and wonder if I look how I feel and if anyone is looking at me, "Oh, dear, look, cancer has struck that one! Yeah, you know - the LOOK."

An aside: while I'm waiting for my plane to board I notice a man that looks strangely like Jack Nicholson. He's sitting at a high counter, wearing sunglasses. Oh, shoot, he's looking at me. Yep, he is a younger, handsome version of Jack alright. Oh, he's getting up...walking by, he's short, OMG! Its him! What on earth is he doing on a Southwest Flight to Vegas? Oh maybe he was out for the Tim Russert Memorial today in Washington DC? Oh, oops, he's looking my way again - be calm. Funny, wait until I tell the kids. His best disguise is to NOT smile that wonderful Nicholson smile. Its a dead giveaway!

Prelude - The "Adventure"

2009-07-12T17:13:00.000-07:00

Well, now you have it up to the point of when this grand "adventure" begins. This is clearly not the "adventure" Dave and I had planned, but it is an "adventure" in every sense of the word.

adventure

Noun

1. a risky undertaking, the ending of which is uncertain: our African adventure

2. exciting or unexpected events [Latin advenire to happen to (someone), arrive]

Collins Essential English Dictionary 2nd Edition 2006 © HarperCollins Publishers 2004, 2006

Multiple What? Melanoma?

2009-07-12T16:40:00.000-07:00

June 16, 17, & 18, 2008

Clearly something was wrong, but I was very uneasy about a Radiologist making such a definitive diagnosis with no supporting data. His blood was fine, his urine was fine.

He was getting admitted now and I was trying to make sure that paperwork was signed adhering to the HIPPA laws (I hate those damn laws), to make sure that the doctors could take my calls. I called the front desk immediately and was transferred to the Social Worker's office. By this time they were closed, but I left my plea. I knew from caring for my mother, that every hospital has a Social Worker (or two) who are there to help you. I left my message, who I was, the situation, I am 3,000 miles away, I need help, I need a liaison, please call me. I'm asking the nurses to get the forms, the waivers, the releases, whatever is necessary to make sure that Dave's doctors HAVE to talk to me. I don't want some arrogant hind-part blowing me off because he's too busy to tell it twice and using the HIPPA to get himself off the hook. Bastards. I'm all worked up.

I call Jude, my best friend, who is in the medical field, vascular stuff. She's totally freaked out, but like me, she moves into action and we have a plan. Like me, she is concerned about the diagnosis without supporting data, but she agrees, clearly something isn't right. I call her husband Russell and at this point, that's it. I'm not wanting to spread this around until I have more information. What's the point? We don't know anything for sure yet. The oncologist will see him in the morning and they will get some tests rolling.

I'm making reservations and figuring out what "Hill 10's" I have at work that need to be addressed, if any, so I can head out. I'm not going the next day, but the day after. I go to work in the morning and get the IT guys to make sure I'm set up to remote desktop in. My boss is out of town. I'm the only admin person for the research center. I have no backup. But I do have the Mechanical Engineering Business Office and a great bunch there and terrific professors and students who will all pull together to do what they can without me and to help me.

On my way out to California, Jude and I know that the tests will be completed and the diagnosis will be rendered. She is to speak to the doctor (yes, made sure she was on all the damn forms) and we would talk when I landed in Vegas. Before I even get off the flight, I'm turning on my phone with the signal I have a message beeping at me. Jude has a good sense of these things and works with surgeons daily for the past 30 years in her profession. I trust her instincts as she can spot medical incompetence/arrogance 90 miles off shore with the smallest utterance of words from the doc.

As predicted, a diagnosis has been determined. Jude he tells me that the doctor is "on the ball" and that Dave has something called, Multiple Myeloma.

"Multiple Melanoma? What's that?"

"No, no, Myeloma. Its a blood cancer. Dave is going to be fine. He said that if he had a Heart Disease patient vs. Dave, he would put all his money on Dave."

"Ok, ok. Thanks Jude."

"Hang in there Lor. Call me when you get there."

I land in Sacramento and one of my dearest friends from my teenage years, Carmen M picks me up at the airport and drives me into Marysville to the Rideout Freemont Memorial Hospital. I remember this hospital from over 30 years ago. I'm a little worried. I've already been working on getting him moved. Trying to decide whether to bring him home to Maryland or take him into Sacramento to UC Davis Medical.

What the hell?

2009-07-12T16:38:00.000-07:00

Monday, June 16, 2008

"Lori?"

"Yeah?"

"It's Sarah."

"Oh Hi Sarah, what's up?"

"Dave can't get out of bed, his back."

"What?"

"Yeah, he was supposed to go to Vegas this morning and he can't get out of bed he's in a lot of pain. I don't know what to do. I could take him to the ER, but he can't get out of bed to get to the car. He wants me to just go to work, but I've called Marlene (Dan's Mom) and she's coming over."

"Ok, Sarah, that's fine. Geeze. I'll call him. Thanks Sarah."

"Lori, I feel terrible leaving him, but Kyra will be here watching Cameron and they can get him anything he needs."

"Sarah, its OK. He'll be fine."

Marlene in fact arrives quickly and calls me. We talk on the phone about what to do. Dave has been laying on a heating pad and I suggest to Marlene if he's having spasms he really needs to be on ice. If after 30 minutes on ice he still can't get out of bed, call an ambulance and get him over to the ER that way. We need to get a picture of his back and see what's going on.

Ten minutes later Marlene calls me. She can't even get the ice behind him without him being in excruciating pain. She's called the ambulance.

A few hours later, I'm at home (remember they are 3 hours behind us on the East) getting dinner. The phone rings...

"Lori?"

"Hi Sarah."

"Lori? Have you talked to Dave?"

"No. He hasn't called me yet. Is everything OK?"

"Uh, its not good."

"Sarah? What do you mean?"

"Uh, its not good. Do you want me to tell you or do you want to talk to Dave?"

"I'll call Dave. Does he have his cell phone?"

"Yes."

I called Dave. He had been diagnosed with Metastatic Cancer of the Spine. WHAT! Wait...

California!

2009-07-12T15:24:00.000-07:00

My father, LtCol Jim Hudson, was one of the original squadron pilots of the Lockheed SR-71 Reconnaissance plane, also known as the Blackbird. Less than 100 men have flown this aircraft. It is believed to be responsible for many of the UFO sitings in the 60s and 70s.

Jim Hudson & Norb Budzinski, mid 1960s Crew Portrait

He was tragically killed in a freak T-38 crash at Beale Air Force Base back in 1971. I was 12 years old and worshiped my father in a big way. I had breakfast with him that morning and then was picked up at school by his commander, Col Jim Watkins and our minister, Pastor Adrian Olsen and told of his accident. I never saw him again. I wasn't just a daughter idolizing her father, he was truly a really good guy. You would like him, ask his advice, respect him and enjoy hanging out with him. I have kept in touch or gotten reacquainted with his old pals all of my life. It has been a wonderful opportunity for me to get new experiences of my Dad through hearing their stories of their relationship with him. It is always fun for me to learn of new things about him or wonderful things he did for someone. I never tire of it. I often tell his friends that my memories end in 1971 when I was 12 and so I have to steal theirs to increase my experiences with him. They are wonderfully tolerant of me in that way. He wasn't perfect, but he was close enough to being well loved, well rounded, bright, ethical, moral, a great Dad, a good son, brother, uncle, husband and friend. He was 37 years old. He came from rural Pennsylvania, a holstein dairy farm just north of Scranton (Kingsley address near Montrose), that my grandfather built from scratch (after it had been abandoned) on 200+ acres of beautiful country north of Scranton. He graduated from Penn State with a degree in Dairy Husbandry through an ROTC scholarship.

My mother decided to stay in N CA after his accident and so I graduated from high school in Yuba City. I'm a Honker. I didn't really understand what that was all about until I left. Our mascot was a goose. I remember the Canada Goose in the purser's office with a Marysville Indian (the neighboring town's school mascot) dangling from a noose out of the goose's beak, but why were we Honkers? I had no idea. I later learned its because we have so many rice patties (very agricultural area of California) that we have what is considered the best duck hunting in the entire world. Go figure. My world was SR's, snow skiing in Tahoe, playing in San Francisco, driving to the mountains to party, but duck hunting? Nope, had no clue.

So my adopted brother, Dan Powell (his Dad was also an SR pilot AND a U-2 pilot - Lt Col Bob Powell), and his wife Sarah, opened up their guest room to Dave to stay until I could join him in Cali.

Dave headed out January 2008 for the West Coast, while I stayed behind and got the house ready to go on the market and he looked for houses in the Sacramento area. Stressful? You bet. Doable? Of course.

Dave was busy learning and loving his new job, driving 1 hour each way to stay with Dan & Sarah, and looking for a house on the weekend. None of which we could buy mind you, because we hadn't sold ours, in fact, ours wasn't even listed yet. I knew we would be downsizing, or I hoped we would, and so I needed to sell things, get the house repainted for proper staging, eventually tell my boss I was leaving and help him find a replacement. I was getting the kids to spend some time going through their stuff, what to keep in College Park, what to send to their rooms in California, what, what, what! Also trying to turn over my other responsibilities in the community, etc. Oh yeah, and sell my house and not listen to everyone freaking out that I was 1) moving, 2) selling in this terrible market, 3) who would move into our court! Honestly, it was almost required that you get approval on who I could sell my house too! Now I love my neighbors and I'm seriously not bashing them. They were and are THE BEST! We had a good thing going in our cute little court and I was clearly upsetting the apple cart. Not too mention, they didn't want to lose me, nor me them. It was sometimes comical though. Of course with the market being so bad, selling my house for less was not a fun thing either, but it was what it was and as it turned out, it didn't get much better.

Time was not on my side. I was committed to finding not just a buyer, but the PERFECT FAMILY. And guess what? I did! I found the most wonderful family, or they found me, but it was my desire, my postulate, the minute I met them, that they were the ones that were going to buy my house. They were perfect, our house was perfect for them, and they would fit into our court and neighborhood perfectly. I know you aren't supposed to care about who buys your house, just get a decent price and boogie. That's just not me, I always want more than that, I'm more emotionally connected to things like that. You think I'm kidding? Let me tell you...I have a beautiful yellow lab, Kip. He is the littermate and brother of my next door neighbor's dog, Maddie. Gail and I were both looking for dogs when we moved in. She came home with a puppy one day and I was out the next getting the brother! We put in an "invisible fence" around both of our yards so the dogs could run in both yards. I loved coming home and seeing two wagging labs greeting me on my porch, but only one was mine to take care of. Gail and I never kenneled our dogs, we took care of each other's dog. I needed to find a nice family who had a dog or at least liked dogs. Just in case though, I did talk to the fence people to figure out what we would have to do to "pinch" off my yard. Well, when Lisa & Tom (my buyers) came over to look at the furniture I was selling and their girls were petting Kip, they told me they had a dog too. "YOU DO? What kind?" I asked. "A Chocolate Lab, Bosco, he's 7." "NO WAY!" I said. "Yes, and we want to get one of those invisible fences." Smiling broadly, "Oh, you have one." Lisa responded, "We do?" "Yes, you do, but here's the deal..." A puppy play date was set and there is now a beautiful chocolate male lab named Bosco sitting on my old porch with an occasional visit from Maddie next door. Dave still shakes his head in disbelief.

Our house in Brookeville sold in about 5 weeks.

We did well, thanks in large part to our premier realtor, Marsha Crowley. She sold us our first house in '81 before we had gotten married and every house since then while we lived in Maryland. She's tough, but thorough and very well connected. We took a reasonable hit in a very bad market and Dave bought the house we wanted in Elk Grove, which surprisingly (haha) lowered their price about the same amount we lost on our house in Brookeville.

I wanted a realtor just like Marsha in California and I found one, by fluke on the Internet, Bob Watlatka. I knew immediately from talking with him that he was my man. He was very similar to Marsha and I spotted that quality right away. I was so lucky and very happy. He took Dave out weekend after weekend after weekend looking for houses in and around the Sacramento area, with me online looking at listings and photos. Sometimes I was on the phone with them looking online and sometimes they were sending me pictures. There were Saturdays where my eyes were just worn out. I went out to Cali once for a few days and Bob picked me up at the airport and we ran around Sacramento looking at neighborhoods I was interested in. It was on that trip that we found the house we eventually bought in Elk Grove. I wanted to move to Folsom and be a little more in the foothills vs. the flat valley, but Dave was tired of commuting and I couldn't blame him for that. Funny how things work out for a reason. We live 2 miles from his office. Had we moved to Folsom as I had wanted, his subsequent illness and drive to the office would have been quite problematic.

With the house sold and a new one under contract, we were all set for our packing and our going away party and I get the phone call...

Our Life

2009-07-12T14:36:00.001-07:00

Dave and I are typical. We are essentially the same age, although I am 1 year and 3 months older, which he LOVES to remind me of every year on my May birthdate when I am 2 years older for the summer until he "catches up" with me and is only a year behind. It turns out that marrying older women runs in both our families. His mother is older than his father and my grandmother was older than my grandfather, so we didn't get any crap on that when we were dating.

We met in college and got married after Dave graduated in 1981 from Cornell University.

He graduated, we got married, moved, both started new jobs and bought a house all in a month! I now wonder if we set the tone for the drama to come later in our lives and I look back on it, not with regret, but with the sense that perhaps I could have been a little less "efficient" and "enjoyed the journey" a bit more.

We moved from beautiful Ithaca, in upstate New York, to the Washington, DC burbs in Maryland. I didn't want to leave Ithaca. I loved it there. But Dave hated the cold and didn't have nearly as much fun as I did. Being in the Electrical Engineering program at Cornell meant he was buried in his studies. I, on the other hand, had a job I enjoyed, friends and a social life. I often say, I had all the fun of being an Ivy League Student and NONE of the responsibilities. It was a wonderful time for me. But we picked up and made our move to Washington, DC, which I also loved, as a city. However, I never got to live in Washington. I got stuck in the burbs and I hated it for a very long time. I discovered that I loved the country, small towns, and big cities. I could have any of them. I'm a military brat, so adaptability and flexibility is something ingrained in my very existence. Living out in the middle of nowhere with everyone else piled on top of each other with nothing to do where cars are required, was not something, I discovered, that I cared for. I learned to appreciate fully why people live in the suburbs and what it has to offer in raising your children and making friends, but it is still on the bottom of my list of places I would choose to live. Whenever I would get annoyed with Dave, I would remind him, that I didn't want to move here, that he said we were moving to Washington, DC and that I had yet to get anywhere close to living in DC! However, I was committed, to our marriage and his success in his career as a telecom engineer. As a seasoned military brat, I adapted and made the best of it, and I did appreciate the people I met and the experiences we had living there for 27 years.

We have two children, our son, Hudson (named after my father, Lt Col James Webster Hudson) and our daughter, Montana. They kept us busy with all their activities and typical suburban lives. I worked on and off, but I learned early in my marriage that I was sold a bill of goods growing up in the 70's with the idea that we (women) could do it all! In the words of Cokey Roberts, "We can do it all, just not at the same time!" Dave's profession was clearly the big income producer for us and I began to find that while we could both work, we couldn't both have "careers". Its just too hard to coordinate conflicting priorities when you are running a home and raising children. I took a back seat to his career for my own sanity and that of our family. It was the best decision I made, with all its obvious pitfalls, it was the greatest good for our family. I kept busy by getting involved in my community and did a lot of volunteer work in areas, that benefited my family and community; in addition, I worked part-time in other areas that generated some money for the kids, our household, and me. Because I was involved and I had two active and charismatic children, I became, like many parents, "Hudson and Montana's Mom". There are still people who I'm sure don't know my first name - a common plight of the suburban parent. However, it has its perks and it is a role I enjoyed. So, dreams of a career for "Lori"? Nah, that became just a pipe dream, but that's ok.

After my mother passed away in November 2001, Dave lost his job, along with most of the other telecom engineers during the dot com bust. For some reason, the satellite industry tanked and disappeared very dramatically. Dave had risen from a hardware designer out of college for Digital Communications Corp, in Germantown, MD, to a Senior VP of Business Development with a large company (Loral's communications company) and, then, POOF, it was gone! It was pretty shocking. Our son had just started high school at a private school in Washington, DC. We had a BIG suburban home in a great neighborhood and I wasn't working. I was honestly still in the throws of nothingness after my mother passed away. I can tell you that when she became ill this last time, I was working part-time and homeschooling our children. I got Hudson through middle school and off to private high school and then had put my daughter back in public school in the middle of 6th grade, due to my mom's illness. I couldn't homeschool them very well from a cell phone at Bethesda Naval Hospital. I would often get a call with them fighting and killing each other while I was trying to get someone to help my Mom who couldn't breathe or had some other healthcare crisis! It was not fun, nor pretty, but was, in fact, comical in a twisted sort of way. You will find throughout my adventure that I find humor in things that aren't really funny. "If you don't laugh you will cry" is a very true statement for me and how I look at things.

After my Mom died, and Dave lost his job, he insisted I go back to work and I insisted I wasn't ready, the kids needed me, I didn't think I could find a job, part-time, close by, etc. Well, he found me a job. I kid you not. I got an email thread between him and an acquaintance from NASA that he knew through our son's baseball activities, and this guy's former professor at University of Maryland. The final comment was, "Yes, we are desperate, have her send her resume right away." Damn. Long story, short, I was hired by a wonderful man who is the director of a energy research center at the University of Maryland in College Park. Professor Reinhard Radermacher. I'm now a Terp (short for Terrapin, which isn't really a turtle, but a tortoise, native to the Maryland area). The good news was, I had healthcare benefits for our whole family, it was a great "re-entry job" for me, a win-win, I could go back to school (paid for), and finish my Bachelor's Degree (I have an Associates), and in 2 years, my children can attend UMD tuition free. Ok, OK, so I was back in the fray. After the first day, I came home and said, "Well, nothing has really changed...you have the hard workers, the not so hard workers, the incompetents, the gossip, etc." I loved it.

Dave reinvented himself and got into the wireless Internet business with some old telecom buddies and did some work for AOL, EarthLink, Motorola and others. It was tough on us, but he was excited about his projects and I was happy he was working and we somehow muddled through it all, with lots of support from our friends and family. But it was hard on Dave. Once he was diagnosed with Cancer, it was not hard to look back and see just how insane everything had become. I had inklings of it and would get on his case about his eating habits and my concerns, but I was busy and involved with my own responsibilities and I expected him to take care of himself. He was driving each week to Philadelphia and living up there in a hotel room, eating poorly and then driving home for the weekend. Eventually he was doing the same thing by air, down to Atlanta each week while working for Earthlink's wireless division as a Director. Earthlink got a new CEO (theirs had passed away), and once again, POOF, it was all gone!

Then he got this wonderful job offer in Elk Grove, CA near where I graduated from high school some 30+ years earlier. Imagine that! So we decided to ditch the kids before they ditched us and go for it. Well, I decided. I'm still not so sure Dave was fully into the idea of moving 3,000 miles away. Remember, I'm the military brat and Dave is, well, Dave - he likes things the same and predictable. He does like warm weather though, so my friends and I sort of ganged up on him and he was extremely excited about the work. I don't know really how much I pushed him, or if I just confirmed his decision for him. Oh well. Such is married life.

Anyway, that is the short story of how we ended up in northern California in 2008.

Introduction

2009-07-12T14:25:00.000-07:00

This is a true story, an adventure, a journey, whatever you wish to call it, of my experience caring for my husband, Dave, when he was diagnosed with Multiple Myeloma (MM), a rare blood cancer (1% of all cancers, 14% of the three blood cancers - Leukemia, Lymphoma, Myeloma).

I also cared for my mother, Chris, who had five cancers over a 15 year period. She licked four of them resoundingly, only to succumb to the last one which had gotten into her liver.

I also cared for, on and off, my father's parents, Otis and Ruth Hudson, and I supported my Mom when she was caring for her father, Robert McCoy. All of them lived very healthily, well into their 90's.

Lucky for Dave and me, I had had some experience with basic caregiving, though I did not have the emotional experience of caring for someone so young, stricken so suddenly - out of no where, with this debilitating, life threatening, cancer in the prime of his life, and on whose survival I depended. I don't mean that to sound cold, its just a reality. Dave is my husband, he is the breadwinner of our family, our survival is not mutually exclusive. We have a home, bills, obligations, children in college, plans - Dammit! He was 48 at the time of diagnosis. We celebrated our 27th wedding anniversary eight days after his diagnosis, with a simple "Happy Anniversary...". Nothing more. For us, at that moment, it was just another day to get through.

Caring for my mother and grandparents was quite different than this. My mother needed little care through her cancers until the last one and then she was terminal. So while it was intense and emotional, it was very finite. Make no mistake, my life was thrown upside down, but it is a very different mind set than someone who is going to fight cancer through chemotherapy in an effort to prolong their life. My grandparents, were elderly, had an incredible life, and just needed some help in their final days. Furthermore, I was not their primary caregiver, but hopefully, a helpful hand to my Aunt June, their daughter. Also a really big difference was that, my Mom was fine and then had a slow decline. Dave was knocked on his proverbial ASS overnight! I mean, he was driving to and from work the day before and then BOOM, he can barely move or get out of bed, is on enough pain killers to knock down a herd of horses, not just A horse, and we are trying to get him from that to being able to get up and go to the bathroom on his own in 30 minutes or less! It was SHOCKING.

Everyone has a story, ours begins here. My hope is that someone out there, finds a kindred spirit in the words here. I hope that you are validated, enlightened, enriched, energized, encouraged and uplifted on your own brave journey as well as that of your loved one. A caregiver's journey is not the same as the patient. Its not the same as the rest of the family's. It is very distinct.

I often said to others when I felt sorry for myself, "this is 'happening TO Dave', but the truth is, it is happening to me too, just not in the same way."

Author's Note - Title: Riding the Wave

2009-07-12T14:19:00.000-07:00

You know how people will often say (including me), "Enjoy the journey"? Well, I wasn't enjoying this journey, despite the beautiful moments and people I discovered along the way, I found that I would have liked to learn all the lessons, sans the journey through cancer. Thus, my title "Riding the Wave."

I was dropping my husband off at the Little Rock, Arkansas International Airport to fly home to California in the wee hours of the morning. He had just finished his stem cell collection AND transplant (7 weeks) and we decided he shouldn't make the long drive home with me in the car to northern California, with me with our trusty, wonderful, yellow lab, Kip (aka: the Kipman, the Kipmeister, Kippers).

Instead, his parents would fly out a couple days ahead of him from their home in Florida and open up the house, buy groceries, pick him up at the airport and care for him. The idea was he would just get home and be in his own bed and recover, while I drove our car home, visited friends along the way, and, believe it or not, had a bit of a break from the daily grind of caring for him. I don't want you to think I mean "grind" in a negative way, it just is what it is folks, a grind.

Little Rock has a great, quaint, little airport. You can park right out front in 15 min meters with little trouble. So I parked, got his suitcase and carry on bag out of the car as he was too weak to do this. (Sometimes I wonder what people must think when they see what appears to be a fairly healthy male standing idly by watching his wife hoisting things around! Oh well.) We went into the airport and I got him all checked in. We had a little extra time, so we went to get some coffee, and behind me in line was this wonderful mother and her young adult son. They were bright and happy and smiling despite the god awful hour of the morning.

We struck up a brief, typical, conversation of strangers in an airport and in so doing I discovered that they had missed their flight due to running a little later than perhaps they should have and the long security line. I responded with the appropriate and typical show of condolences for their situation and the young man, smiled broadly and, standing very relaxed with his hands in his pants pockets, shrugged his shoulders and said, "Eh, we're just ridin' the wave." I smiled back broadly, as it was certainly my way of thinking after my experience of the past seven weeks in Little Rock (and much longer actually), and I responded with, "Wow! I like that! Much better than 'Enjoy the journey'!" We had a wonderful moment then as we got our java and I left them at the counter and went to go and sit with Dave - to share some coffee before I sent my baby off through the security line to make his way home, alone, without me, in his weakened condition. And then Kip and I would set off for the 2200 mile journey across the southern states toward home.

"Book Flap"

2009-07-12T14:13:00.000-07:00

I'm an incredibly optimistic and upbeat, but also realistic. I "choose" how I want to feel in the most dire of situations. Dave is more pessimistic by nature. This story of our journey to get Dave well, like our marriage, is full of the ying and yang of our approaches to life. It reflects my deep commitment to my personal beliefs and philosophy, but is full of the realities of each day of caregiving. Somehow I manage (or so I hope) to temper my optimism in deference to Dave while trying to uplift him, get him well, and increase his mental/emotional well being enough to go through all his treatment and tackle his fears - and somewhere in there, mine as well. I hope this is an uplifting, encouraging, sometimes funny journey through what most still feel is a devastating diagnosis, "CANCER!"

While dealing with the day to day crisis of getting Dave well, I have believed that the hardest work was yet to come. How to help Dave to LIVE WITH Cancer.

Synopsis

2009-07-12T14:08:00.000-07:00

Dave and I were in the middle of a coast to coast relocation. Our children were safely and securely nestle into college back in Maryland. I was busy tying up lose ends, getting the house sold and packed up, winding up my job and planning to help find my replacement. Dave was already in California, working hard to come up to speed on his new job, staying with a childhood friend of mine and looking for a new home for us to move into.

On the morning of a planned business trip to Las Vegas (June 16, 2008), Dave couldn't get out of bed. He had been experiencing some back discomfort for a couple of months but had attributed it to moving boxes around and generally over doing it. When the alarm went off at 5 am to get up and catch his flight he was experiencing excruciating pain. He managed to get out of bed and make it to the bathroom, but quickly returned to bed, just to rest a little longer in the hopes that it would pass. It didn't. It got worse.

Little CJ, age 9, Dan & Sarah's daughter, hated it when "Uncle Dave" left to go on a business trip. True to her past behavior, she had woken up very early in the morning and camped outside near his bedroom door on the floor with her blanket and pillow. She didn't want him to leave without saying goodbye. Knowing CJ was outside his door and desperately trying to keep his pain at bay, Dave calmly and quietly called to CJ and asked if she could get her mommy. "Sure!" CJ said, happy to have an important task from Uncle Dave. She ran upstairs to tell her mom, who was getting ready for work, that Uncle Dave needed her right away!

Starting Line ("Beginning" Note)

2009-07-12T10:24:00.001-07:00

I have been in a year plus long journey as a caregiver to my husband Dave who is going to be 50 this August and was diagnosed last year with Multiple Myeloma, a rare blood cancer. I have kept a detailed Caring Bridge website for the past year since his diagnosis. Caring Bridge is a wonderful private website service for families who have a loved one who is ill. As the year has gone by and I have met many people on the web & in person, dealing with cancer, in general, fellow Myeloma patients, caregivers, sons, daughters, moms and dads and friends, I have found that I wished to be a bit more public about our journey, and mine in particular. Caring Bridge is about Dave and how he is doing for our many friends and family. This will be about me and my growth as a person through this cancer journey as a caregiver, in the hopes that it reaches out to those of you who aren't sure what to do, how to act, deal with your feelings, get a sanity check, find some inspiration, gain some resolve and strength and grow, along with me, as a person.

My journey with Dave is distinctly different in many obvious ways to his journey. I found myself often saying, "Its happening TO HIM, not to me." But I realized that it is happening to me also, but in a different way. We share a lot of the same fears, loneliness, angers, frustrations, and humor (yes you can laugh about cancer, it takes a while, but you get there and when you do, it is incredibly liberating!). There are things however, that are unique to me and unique to Dave that we don't share, though we might "understand", or . . . maybe not. It is this journey, that of the caregiver, that I want to explore.

I participate in a cancer social website and I will tell you that I have grown and learned so much as a caregiver by reading and dialoging with patients. It has helped me immensely in understanding and anticipating what Dave may be going through or getting too. I have come to learn that the patients have learned a lot from me about their caregiver's angst and difficulties. Together I think we are the ying and yang of this whole deal and can help each other to get through it and come out the other side not just in one piece, but better for the experience. Understanding fully, that we might all like to do without the experience all together, we have no choice, and so let's hope we gain something positive from it.

I will start this blog from the beginning and try to capture what was occurring for me at the time and explore some of my feelings and growth during this journey. I'm a year out from his diagnosis therefore, it will be an interesting diary in that it won't be "real time" so to speak. If you can't stand it, knowing how things are, you can always follow Dave's progress in real time on his Caring Bridge site. You can subscribe to it and it will shoot you an email when I log a new journal entry. It does not promote to you or sell your email.

I will be very interested in your thoughts and your comments all along the way. It only makes us better.

Lori