Chris Sanderson's Journal
Help for the Family -From Mark
Written Jun 26, 2012 1:21pm by Brogann Sanderson
Hi Everyone, its Brogann’s brother Mark. As many of you know, a large portion of Chris and Brogann's family will be traveling long distances to support and say goodbye to Chris. Unfortunately, there is a significant financial burden of the travel, accommodations, as well as lost income from missed work. It’s a source of anxiety which, we all can agree, is just not right at a time like this. To help relieve some of this financial stress, a fundraiser has been started which we hope will allow everyone to focus on what's important in the time we have left with Chris. If you would like to contribute, please visit the link below. Any and all contributions are welcome and very appreciated.
Thanks in advance,
TIME TO SAY GOODBYE
Written Jun 25, 2012 12:53pm by Brogann SandersonChris came home to my mother's house where I am hoping he will be able to spend the last leg of this journey. Hospice is arranged and we are focusing on comfort as we do everything we can to help Chris make this transition as peacefully as possible. If he develops pain or respiratory issues that we are unable to control at home, he will have to go to a hospice facility.It is impossible to predict how long Chris has to live, but I can tell you that he is deteriorating quickly and, as of yesterday, refusing all food, water, and medication. To me, it seems like we are at the point where his organs are still functioning but his brain is shutting down. I do not know exactly what Chris is thinking or feeling, but it is pretty clear that he has made the decision to end this battle on his terms, regardless of suffering. He is still conscious but minimally responsive, and I just pray that feels little pain and so much love.As for me, there are no words to describe my sorrow and sadness. I have thought about these moments many times over the last 4 years but the reality is beyond anything I ever could have imagined or prepared for.On Thursday I told Stevie and Clementine that daddy was definitely going to die, and that he would be going to heaven very soon. The three of us cried together for a long time and I did the very best I could to get them through what was the single most difficult moment of my life.Then, yesterday, while lying with him in a hospital bed, I told the love of my life that he was going to die. I have no idea how much Chris understood, or even if he was awake, but I can tell you that I am finally, after three and a half years, feeling absolutely crushed by the weight of these responsibilities and other caregiver burdens. All I want to do is be with Chris -- to love him and comfort him and have some time together out of the fight.
UP AND DOWN AND ALL AROUND
Written Jun 13, 2012 12:03am by Brogann SandersonIt has been a very emotional few days since Chris arrived home from the hospital. Truthfully, I cannot make sense of everything that is going on, so I am just going to lay out the information and take you on a little ride.First of all, Chris is rehydrated after his stay at Hotel Jefferson Hospital last week. The trick will be keeping him hydrated now that he is home so that we don't have a repeat of that crisis.Secondly, the antibiotics seem to have cleared up the cellulitis (skin infection) on Chris's leg as well as his Group B Strep urinary tract infection. However, the infection near his craniotomy site is no better. As I mentioned in my last update, Dr. Andrews changed his antibiotic for a third time last week to Cipro, which he was receiving via IV in the ICU. But, when I brought Chris home on Saturday I realized I was missing a prescription for Cipro in pill form, which I had thought was the plan for discharge. I called the step-down unit and they had no record of him ever having been on any antibiotic, so I went into a little panic, called Dr. Andrews who was out of town (as well as some of his nurses and anyone else I could track down), and, it turns out the Cipro slipped through the cracks when Chris was moved from ICU to a regular bed on the 6th floor. So, basically, the hospital inadvertently discontinued the antibiotic for 48 hours. Not good. How this stuff happens in hospitals, and how it always seems to happens to us, is beyond me.Dr. Andrews did call in the prescription before the local pharmacy closed on Saturday afternoon, but it was unnecessary drama and still has me wondering about this infection on his head. It was definitely worse on Saturday (after 2 days off antibiotics) and back to baseline (which is still very swollen and red) on Sunday morning after just one dose, but I still wonder how that infection is affecting Chris's physical and mental state, and consider this a big unknown right now. It has not gotten worse over the last 2 weeks, but ii certainly is no better either.Overall, Chris is doing much worse clinically. He is very weak and somewhat disoriented. He is sleeping a lot - virtually all of the time - waking up during the days only to take his medication, eat, and go to the bathroom. He has moments of severe confusion, when, for example, he picks up a napkin and attempts to eat it instead of the slice of pizza in front of him, or, when he has me search for his cell phone for almost an hour when it turns out he is unknowingly holding it in his hand under the blanket. But, he has other moments of remarkable lucidity, particularly at night, when he expresses himself so clearly and almost seems normal. Although yesterday and today were much better, he exhibited quite a bit of delusional thinking over the weekend -- like insisting that I was giving him medication to make him sick, or that I was in cahoots with the doctors and not telling him the truth about what was wrong with him. Over the weekend he was also incredibly agitated and difficult to care for because he would refuse to take his meds or drink water to stay hydrated -- even throwing his meds or water a couple times. He requires a lot of assistance doing most things now, and yet he desperately wants to maintain his independence, often refusing help even when it is unsafe or clearly not working for him to do something alone.To say that caring for him recently has been a challenge is an understatement. I was a wreck on Saturday night and all day Sunday trying to adjust to these sudden changes, particularly to those in his personality. Emotionally, I did not recognize my husband -- I tried to rationalize his behaviors in my head ("this is the tumor, not Chris"), but it was impossible not to take things personally at least on some level. And, physically, I just could not get him to comply with the medical care he needed. I knew that he was going to end up hurt or very sick if something didn't turn around. In all honesty, it was starting to look like I was not going to be able to manage him at home. But, then, on Sunday night, as I tiptoed by the bed so as not to agitate him, he surprised me when he asked me quietly and calmly if we could please talk.I sat down on the bed and we had the most rational and clear conversation for about an hour. He expressed some of his confusion about what was going on. He asked for a lot of clarification about his tumor, the infections, and the dehydration. I tried to explain everything as best I could but I admitted that we were dealing with a tangled web of medical issues right now and that doctors are having trouble sorting everything out. It was hard to tell how much he was comprehending, but he did seem less paranoid after we went over it a few times. I reassured him that everyone was on his side, and that we are doing everything we can to care for him. But I also told him that he was making everything much more difficult than it needed to be with his defiance, non-compliance, and aggression. I told him that I could not care for him by myself -- that I needed help -- and that I was worried about his health and safety should the dynamic between us continue to be so challenging. I also told him that I was worried about the girls witnessing one of his episodes, or, even worse, him falling down the stairs or hurting himself in some other way. I illustrated with examples what he could change that would make things easier (like not doing the stairs alone, drinking water when we wake him up and tell him he needs to, taking his meds without a fight, not batting the lovenox shot out of my hand, and so forth). He seemed to understand and promised to try and turn things around. And, I must say, yesterday and today were much better. I have no idea what allowed him to have that moment with me on Sunday night, but I was in agony over what to do and then so grateful that we could tap back into "us"... the Brogann and Chris that has gotten us this far... which, ultimately, gave me the confidence to move forward with some important decisions the next morning.So... yesterday a physical therapist came to the house to evaluate Chris. She believes that Chris would benefit from PT three times a week as long as the disease does not progress too rapidly. We discussed Chris's case for a long time and, after her assessment, she agreed with the doctors that, at this point, Chris's problems with strength and mobility do seem to be caused mostly by severe muscle deterioration from the steroid, which means he should benefit greatly from PT. She believes there could also be some psychological benefit to physical therapy, especially because Chris is an athlete. If Chris's condition deteriorates, or if his MRI scans indicate tumor growth, PT may be become obsolete and more frustrating for Chris than helpful. But, until then, I think we are going to give it a try. Chris only worked with the therapist for 10-15 minutes, but he responded well to her and seems receptive to the idea.Also, starting tomorrow, we will have a Home Health Aide coming in for a couple of hours three times a week to assist Chris with activities of daily living like showering, brushing his teeth, getting dressed, etc. That should be interesting. Chris does not feel well enough to make hygiene a priority, but, when it is necessary, he still insists on doing all of these things himself. The problem is that he doesn't complete these tasks properly -- he will shower but forget to shampoo, for example, or use his finger for a toothbrush without even realizing it is wrong. The same with eating, which has become painful to watch. He stabs his food with a spoon rather than using a scooping motion, or gets a knife out of the drawer to use with his bowl of cereal. And, honestly, he would rather struggle to do it his way than be corrected.Lastly, in addition to the home care nurse who will visit twice a week, I am interviewing a private nurse tomorrow that comes highly recommended by a close family friend. It is going to be expensive, but, until I feel more comfortable leaving Chris alone in the house for extended periods of time, I think we need to consider hiring someone to help cover some of the hours every day. This nurse is going to visit our home and evaluate the whole situation tomorrow and, together, we are going to come up with a schedule. She understands that this could be a temporary arrangement, and that it may involve just sitting at the house and doing nothing, but I would rather have too much support than desperately try to manage a situation that is always on the verge of being out of control. It is just too stressful, and, since we very well may be moving in the direction of needing these type of in-home supports, why not start now. If it ends up we can back off at some point, great, but, for now, Chris is struggling and I think bringing in this help will be good for everyone. Personally, I am eager to hand over some of the caregiving responsibilities so that I can re-assume my primary role as Chris's loving wife. We'll see how it goes.Okay, so that's the update on how Chris is doing clinically. In a nutshell -- not good. Then, last night, I came across the radiology report from the MRI that was done last week -- the 3rd MRI since the trial started. It was in my "bin" in an envelope -- I did not realize that Chris's mom had also picked up this written report with the CD of the MRI I asked her to get and this was my first time sorting through my mail. My heart sank when I read the report, which was very negative. Dr. Andrews had left me a message on Friday on his way out of town that there was a no bleed and nothing else on the MRI that he was overly concerned about... and that he would see us Tuesday when we could take a closer look at it together. But that was all he said. I was a little suspicious because Dr. Andrews was so excited when he told me about the first two MRIs showing improvement, so a part of me was worried that he did not sound quite as enthusiastic, but I figured he was just reporting on the bleed, which had been our primary concern, and he was off to a conference for the weekend, and I knew I would follow up with him in a few days. So, when I read the radiology report, which indicated tumor progression in multiple areas as well as new areas of concern, I thought I understood exactly what had happened... the MRI was drastically worse, Dr. Andrews didn't have the heart to tell me, and we were going to have this news (as well as the fact that Chris was out of the trial) delivered to us this week.I took some time to digest the report, then tried to casually talk to Chris about the MRI this week -- I tried to gauge his thoughts and opinions; I asked him how we should respond if we get bad news; and I told him I was worried. Basically I was trying to prepare him for what I knew we were going to hear today. Even in Chris's semi-confused state, he wanted no part of this conversation. He said very clearly that he was not ready to give up -- that he wanted to keep going even if the news was bad. And he was bothered by the fact that I seemed like I was pushing him to stop treatment, which, of course, I never said, but, by entertaining that as a possibility I was putting something on the table that, for him, was unquestionably off limits. Really, I just didn't want him to be surprised. We have, after all, received two very good reports up until now. And I wanted to know his wishes so that I could advocate on his behalf. What I want for him, or for myself, or for our family, is not really important, and was never part of the equation. I just wanted to see where he was with all this before today's MRI and I got my answer. I cannot believe with how sick Chris is, he has not done more thinking about dying, and he has not grown more weary of treatments, but he just hasn't. I try to give him permission to go there by initiating these conversations, but he responds to me with such certainty and annoyance, I think I am pretty clear about what he wants to do.I had a rough night last night and could not sleep thinking about Chris and this journey coming to an end. I held Chris's hand and tried to cuddle up to his frail body. I wept and thought about our early years at UVA, our wedding, our vacations, when we bought our first house, our parties, holidays, and, of course, poor Stevie and Clementine. I envisioned Chris's funeral and then pictured being in this house every night by myself, so lonely and sad and with so much responsibility to manage all by myself. I went in and out of sleep all night, and every time I woke up, that wave of nausea that hits after a couple seconds when you zone back in on your last thoughts would come over my body. You would think I have had hundreds of these nights since Chris was diagnosed, but, for whatever reasons, I have not -- in the beginning right after diagnosis, yes, but not recently. And thank goodness, because it really wiped me out.I woke up this morning exhausted and deflated. I called Dr. Andrews and put everything out there... Chris is much worse clinically, I read the devastating MRI report and know his tumor is growing everywhere, Chris is not ready to give up, I need to have his back no matter how unrealistic our position may be at this stage of the game, your team needs to manage this transition out of the trial today as sensitively as possible, and on and on. I felt that I could not change the situation, but I was bound and determined to protect Chris and make this as easy on him as possible. And then Dr. Andrews interrupted me:"Whoa, whoa, Brogann. Yesterday I met with the head radiologist here at Jefferson, who is also the radiologist overseeing our trial, and we both disagree with the report. While last week's MRI does look worse, it was completed using 50% more something-or-other, which is going to exaggerate everything and cannot be accurately compared to the two previous MRIs. It is concerning that Chris is not doing well, but I think it is definitely pre-mature to say we are dealing with tumor progression, and I want you and Chris to come down this afternoon so that we can take another look with a new MRI and go through the slides together so that I can explain everything."As you can imagine, I was floored by this. So much so that I just stood there in my driveway in my nightgown and with the cell phone to my ear... silent. And, when Dr. Andrews asked me if we were still coming down for the MRI, I could not find my words to answer him at first. It was definitely awkward for a minute -- there were a thousand thoughts running through my head like, "the last 12 hours have been an emotional marathon, I really don't want to be jerked around." But, I also felt a surge of hope and thought, "holy crap, what if he's right?" Eventually I just said, "okay, see you at 1:00".Getting to Jefferson was more difficult than is has been in the past. It is not easy for Chris to leave the house and he needed a wheelchair when we arrived because he was too weak to negotiate the hospital on foot. But we got down there and got Chris into the MRI machine. About half way through the test, Dr. Andrews found me in the waiting room. He was in his scrubs in between operations again but went into the radiology room to check out the first few images and he said they "didn't look bad". We chatted for a while in the hallway. I explained how confused I was, that my head was spinning, and that Chris's clinical status is not matching up with supposed improvements on the MRIs. I questioned whether his interpretation of the scans was objective given how invested he is in this study. I realize in hindsight how disrespectful that probably sounded, but he was sympathetic and assured me that we would look at all the images together upstairs when Chris was finished. I also told him that I knew there were not going to be many treatment options for Chris after this study, if any, so it is not like I was pushing for a definitive answer one way or the other, I just needed to better understand all of the discrepancies. Lastly, I wanted to make sure he knew Chris's desire to keep fighting -- that, basically, regardless of MRI results today or in the future, we would stay in the trial for as long as he would have us. It was a desperate comment, but he smiled to assure me that he understood that I was trying to protect Chris's psychological well-being as much as anything else... then he gave me a hug and said, "I think he's still in the game".A little while later we went upstairs to the exam rooms and, with another room full of Jefferson people, Dr. Andrews went through every part of the MRI: the flair sequence, the profusion sequence, the scans with contrast and without, compared to last week, the week prior, and also to 5/14. Just like I explained before, there is a lot of tumor there, and it is all over the place. And there are some new areas of concern. But there are also some undeniable improvements that clearly dispel the theory of active tumor progression. The bottom line is that these tests are difficult to read. What looks like tumor could also be necrosis or inflammatory response. It is not super clear one way or the other and Dr. Andrews would like to put all of the images together with other data from Chris's bloodwork and some more tests they need to sit down and do with the scans themselves and see which theory lines up the best in a few days. For now, there is no harm in accepting the most optimistic interpretation of the MRI results, so that is how Dr. Andrews would like to leave it. And we are on board.Chris is scheduled for his next MRI in 2 weeks. We are hoping to keep him out of the hospital between now and then, but he is definitely in a fragile place so we are going to take it day by day. A major side issue is the infection on the side of Chris's head, which is not resolving. The plan is to finish up the antibiotics and see if it gets worse. If it does, my instructions are to call down to Jefferson to proceed as a direct admission for surgery to repair a standard bone plate infection. For obvious reasons, it would be a huge bummer if Chris had to have another surgery, but this one is pretty routine as far as surgeries go, and, frankly, I would be relieved to resolve this infection issue and take the question of how it is affecting Chris off the table for good.Never a dull moment, eh?Thank you for taking the time to follow our journey.Love,Brogann