Monthly Archives: March 2012

The Elephant in the Room

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Today (Friday) was such a great day. It started good and just continued to get better as the day wore on. Yesterday we had a continuous care nurse at the house for about six hours due to the events of the previous day. She was very comforting to have around, but she was able to leave early because Brian had improved so quickly. Our nurse visited again as well yesterday to follow up on the changes in meds. In addition to adding several medications, she also ordered many meds in liquid form so Brian has a choice between pills and liquids, depending on how he’s feeling. Methadone has been a great fit so the Dilaudid is really just used as a breakthrough on occasion. Brian is using several meds for vomiting and has increased the dosage of his anxiety drug, but decreased the frequency of use. Those changes are working. However, the biggest change is no more sleeping in a bed. He sleeps in his stress-less recliner, dubbed the “cancer chair” back in 2007 after his surgery. We rearranged the living room tonight so the love seat, where I sleep, and cancer chair are side-by-side. At least this way we can cuddle long distance by holding hands! That, and he can slap me on the head to wake me up for meds in the middle of the night.

Yesterday was also the first time we met Brian’s hospice doctor, Dr. Roney. He’s incredibly nice, compassionate, informative, and straightforward. He evaluated Brian and then just chatted with us for quite a while. Obviously he has looked at Brian’s records thoroughly and knows where things stand. He asked if we’d discussed prognosis yet,which we have and haven’t… We did, of course, speak at length with the oncologist after receiving the unsurprising diagnosis on February 10th, but we asked only for a vague prognosis, which was “months, not years.” I admitted that we’d both consulted with Google because Google knows all! (You do know everything on the Internet is true, right?) Everything we looked at from reliable, scientific sources gave us a pretty good idea what to expect, but we’ve really kept that to ourselves until now, and I’ve debated with myself all day about saying anything or just leaving it alone. The nice thing about debating with yourself is that you win either way.

“It” is the elephant in the room that no one wants to talk about. However, the more I thought about it, the conclusion I came to is that “it” is nothing to shy away from discussing. There’s no real point in dodging the question. So, let’s get to “it.” Here’s what I know from reading about melanoma. Actually, a disclaimer first: I’m not a doctor, this is not a medical journal, nor is it a Comp I paper where I plan to cite my sources in a tidy bibliography. My information came from various places and I’ll leave it at that. Okay, here we go. Melanoma is a unique cancer, and not a pretty cancer. It plays dirty and the more places it finds to root itself and do its deed, the better it gets at playing to win. One organ is not so bad. Melanoma has a chance, but odds are in the patient’s favor. Start adding organs and the odds change. If melanoma swoops in and takes the liver and lungs, the fight is on and it’s a hard battle. Brian had melanoma in four organs on the day of his biopsy, two of them being the liver and one lung. He had a tumor on his head already growing, albeit very slowly. Since that time we have found new tumors on a regular basis. These tumors are currently responding to medication that sort of stunts their growth, but after a while the meds will stop working and the tumors will grow. Melanoma is stealing his muscle mass. Feed yourself and cancer eats your food; starve yourself and cancer eats your body. It’s a tough battle. I do sneak in extra calories wherever possible. No more low fat foods for Brian! The survival rates for melanoma in four or more organs is dismal and there is simply no cure. There are possible ways to buy time, but that’s a deeply personal choice a person has to make and it’s ultimately cruel to ask a person to make a choice based on anything other than their own desires.

Brian is healthy except for the fact that he has stage 4 metastatic melanoma. His heart is strong. His lungs sound good. His liver is enlarged and hard in some areas but not showing signs of failure right now. Had he not been so healthy going into this, the prognosis would be worse. So, it turns out it really does pay to eat right, exercise, and treat your body with care. When Dr. Roney told us that he’d be surprised if Brian is still alive in four months I was surprised, but I don’t think it showed. And if it had shown, it would not have been shock at such a small number of months. Brian and I had a heart to heart a while back and he said he was sorry that he probably wouldn’t make it to September 26th, our 20th anniversary, after all. I said I knew that. As time has gone on, I have been hoping for Memorial Day. I’ve not voiced that until now. I’ve put on my smile just as he has, and said with enthusiasm that we were shooting for September 26th. So my surprise yesterday was relief. Relief that we may get two months longer than what I’ve been prepared for.

I know that doctors can be wrong and patients can defy odds and miraculous things happen. I’m an optimist. But I’m also realistic, as Brian is. This cancer has obviously been there long before any outward sign showed. It’s been making its plans, setting up its pieces in strategic places, and plotting a takeover. There are really rough and depressing days filled with tears and fatigue. There are really good days like today, which Brian said was absolutely wonderful, that are filled with smiles and laughter and energy. Brian’s goal now is to enjoy every day he has as much as he possibly can.

Numbers

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Numbers are not something I like to deal with, but lately it seems that some numbers rule my life. For instance, Sunday it was good to see Brian reach 38 years. 38 was an important number. Some numbers are encouraging and others are not.

30: the number of pounds Brian has lost in 7 short weeks. After watching that happen I never want to hear another person, including myself, complain about weight. I’d gladly take someone’s extra pounds and give them back to Brian.

1,980: the number of miles we are from our older son. Some days it feels like so many more.

4: the number of times my alarm sounds reminding us it’s time for another round of scheduled meds.

24: the number of hours Brian and I have spent alone together since February 5th, with no doctors, nurses, or visitors.

22: the number of medications I have to keep track of, some scheduled, some as needed, and others to be used when all else fails.

7: the number of days each week I go to bed hoping we will both wake up in the morning.

Yesterday was great and awful. Great because Brian had enough energy to go see his grandmother and watch a movie at my parents’ house. That doesn’t sound like much but it involved about an hour and a half in the car to get places and walking around once we arrived. Trips of any distance involve prepping portable oxygen, double-checking the meds we will need while out, packing drinks, and allowing lots of extra time for the unknowns. At 5:30pm last night the vomiting began. At bedtime it kicked into high gear and didn’t stop until around 10:30 this morning. Our nurse came over twice and listened intently, formulated her new plan with the doctors, and it seems to be working. Unfortunately new plans are probably part of the new norm.

Activity is a wonderful thing. When Brian has energy nothing feels better than getting out of the house and doing something. Anything. There’s a fine line, however, that we seem to cross too often. Just a tad too much activity and Brian crashes; the harder the crash, the longer and more complicated the recovery. That’s what we experienced last night and this morning. It would be nice to have the luxury of making plans and having things to look forward to. Right now we are at a stage where looking forward means as far as the next few hours.

Nurse Lesley, along with so many others, have asked me “how are you doing?” and my answer usually starts with “Brian is…” I avoid the question of how I am doing. Brian and I are opposites. He draws energy from being around people, from activity with others. I draw energy from being home, alone, in silence. Don’t get me wrong – I enjoy people, parties, activities, etc., but I quickly become tense and drained. When Brian has too much quiet and alone time he becomes tense and drained. Finding equilibrium has been a challenge. That was a very wordy explanation to why I don’t say how I’m doing and why I’ve said before this is not about me. If I were to meet my own needs right now it would mean not allowing people to see Brian sometimes and that would mean denying a visit that could be the very last. I could not live with myself if I did that to Brian and those who care for him. A day will come when I will be home, alone, in silence. The silence will probably seem deafening then, so I can handle whatever I need to handle for now.

38 Years

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38 years. Today Brian celebrated his birthday. He was born just after midnight 38 years ago. It’s far too big a task to sum up someone’s life in one page, one journal post. It’s hard to do that even when there are only 38 years to cover. I didn’t know Brian until we were both 17, though I’ve heard so many stories of him before that time from family and friends. Today we looked through photo albums and laughed at the hairstyles and clothing of the 70s, 80s, and 90s. I saw the adorable little boy who would grow up to be my high school sweetheart, then my husband, and father of our two children who are also now grown. I saw pictures of the places we have called home and the places Brian called home long before I entered the picture. I saw pictures of trips to the mountains, picnics and family get-togethers, birthday celebrations, holidays, weddings, vacations, and even funerals. I saw a lot of smiles and joy on the faces of people we have known throughout the years and it filled me with a lot of happiness. Brian commented more than once that he remembered good times.

I am not certain, of course, but I would imagine that when someone comes to the point of death at the age of 75 or 80, there are questions of how well life was lived and if it was enough. Brian has questioned some of that now. Can you imagine looking back over only 38 years and wondering if you’d seen enough, done enough, and been enough? Did you waste time or do the best you could with what you had? We all have regrets and wishes for things we could have, or even should have, done differently. Brian and I have spent some time talking about the past and the future. It’s hard to know what to share and what to keep private. I’ve certainly bared my soul much more than I ever thought I would in such a public way. I prefer to keep things close to my chest, locked tight and protected as much as possible. One question that Brian asked me was if he was enough for me over the last 20 years. I assured him, with complete honesty, that he was. We renewed our forgiveness for each other for the past, for times we have failed to live up to all the promises that are made in wedding vows and throughout marriage. We called it even! Could we have been better to one another, more loving, more kind, more understanding? Of course. Thankfully we have enough time left to be exactly what the other one needs.

38 years is not enough. Life is not fair. I know that’s reality – I told our boys that all the time growing up. Life isn’t fair when you get the smaller piece of cake or when you get a horrible disease called cancer. But sitting here today, celebrating what is almost certainly Brian’s last birthday, I wish that were not true. I wish life was fair and that I could have exactly what I want. I wish there would be 38 more years to fill with pictures, birthdays, weddings, memories, vacations, and all the other things that make up the thing we call life. I wish that more than I’ve ever wished anything.

Brian, I love you.

Roller Blades & Park Swings

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At this moment I am on my way to the Denver Auto Show with Brian, Jordan, and Don (my stepdad). Don and Brian and I have been to the auto show many times so this feels like some of the old days. It’s a sunny day in the 70s and the snow-capped mountains look pretty.

Brian is on day three of his new meds and there is good news to report. The Methadone is working its magic. Prior to being on it he was taking Dilaudid every three hours (8 times a day) and needing it. Over the past two days he’s taken less than half of the normal doses and his pain has been managed. He only takes the Methadone three times a day. He’s cut back on his anxiety medication and is more alert. Some of the other medications appear to be helping with vomiting by decreasing swelling in his throat and breaking up what’s in his lungs. There’s been an adjustment period, but it appears things are improving a bit. The past two nights I have turned off the med alarms and Brian has not needed drugs at midnight and 3:00am. The night sweats have also gotten better.

Our weekend nurse came for a visit today and we went over all the medications and the normal stuff, but mostly we talked about emotions. She was very helpful and obviously has a lot of experience dealing with the day to day emotions that patients and families go through. It’s reassuring to hear that it doesn’t matter what you feel on a daily basis because every feeling is normal, whether it’s anger, denial, bliss, contentment, or anything else. It’s reassuring to know that’s normal, but that doesn’t mean it feels normal or right. I suppose you have to tell yourself every day that it’s okay to just let yourself feel.

We just passed Cherry Creek Mall where there is a park and a bike path. That reminds me of a couple of days long ago when Brian Jr. was a toddler and Jordan was not even a year old. At the park, Brian was pushing Brian Jr. on a swing and told him to hold on. Apparently the instruction was not heard or the grip was just not tight, because after a good push Brian Jr. flipped onto the ground. He wasn’t hurt, but it was traumatic enough that he didn’t touch a swing for a good year. Another day we went roller blading and had the kids in strollers, the “Brians” were partners and Jordan and I were partners. We rounded a curve and the path sloped. I’m not known for either my skill or coordination on roller blades. I tried to brake a little but knew I wouldn’t make the curve, so I decided it was best to head toward the grass. I did and the stroller flipped, leaving Jordan dangling upside-down. He was fine, still smiling as he hung there by the straps until I picked up the stroller and we continued on. Those were not some of our finest parenting moments, but they do make me laugh and I don’t think it screwed the kids up too much!

Well, we are pulling in to the convention center and getting ready to park and go enjoy the auto show. Have a happy Saturday!

Struggling to Adjust

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Last night was horrible. Anyone who has experienced night sweats can probably relate. Brian has had night sweats before, but nothing like last night. If I hadn’t known better I would have thought someone played a prank and dumped a bucket of water all over him. This happened twice so he was ready to get up at 7:00 despite still being exhausted. He thanked me for taking care of him and putting up with all of this. Honestly, all I could think was that no one should ever have to endure something like this alone.

Since the events of the night, things have been much better. Brian has been up a lot today and very alert. I believe it is partly due to not taking so many anxiety pills. Those definitely calm him down, but in return they make him drowsy and sluggish.

Brian’s brother and my brother came over today and they stayed for quite a while. They played Wii bowling with Brian and Jordan which was great. I read The Hunger Games which was also great. Brian made it through the whole game and had quite a bit of energy compared to other days. This evening we are going to my parents’ place to watch a movie. It will be a full day for us!

It is hard to say how the new meds are working, but the night sweats are one side effect. The other one I’ve already noticed is agitation. Even when you expect it, that is a side effect that can throw you off, especially when you are a people pleaser like I tend to be. We will know in the next few days how the change in medications is working. I have a good feeling about it but, honestly, that is based on nothing other than hope.

Thanks to everyone who has provided meals. We are very grateful for the kindness shown to us. We almost have too much food! It’s all been tasty though and we’ve even been able to share it with visitors, which is very nice.

We received a call from the moving company letting us know our stuff is en route and the driver will call to let us know when to expect delivery. Our car will arrive on Monday. That will really make our move official.

Brian and I were talking about the move and how difficult it’s been to adjust. During that conversation we realized that we each did this move for the other. He wanted to move so I would have support from family after he is gone. I wanted to move so he would have support from family while he is still here. What we both wanted for ourselves was to stay in Florida. Funny how that works! What we also concluded, however, is that Colorado is where we both need to be right now, no matter how much we miss home. I would not want to rob our family here of being close to Brian at this time. I would not want to rob Brian of seeing and experiencing as much as he possibly can with family we’ve been so far from while he has the chance.

The weather continues to warm up and spring is around the corner. I can’t wait to see green grass and new leaves and some flowers blooming! I’m trying to keep my thoughts positive and look on the sunny side more and more every day.