Thalidomide/Dex

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

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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

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

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

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

scri6y9me4

Dr. Creep

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

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!