Last week was the start of cycle nine of DRd and this week we met with Dr Sborov. Normally the two go together, but for some reason they didn't this time. Some of what he said is something that has been on my mind for a while, but especially this month. At the beginning of the month, a neighbor got up in church and shared about how a friend of his recently passed away after a battle with cancer. In his last week and moments he had commented that he had "won his battle with cancer". My first thought was.... but how can that be? He then shared that he was about to drink the "bitter cup" and taste of death, but was not bitter. It's gotten me thinking. Cancer is a battle fought on many fronts, it often feels like a constant assault from all sides. What are the different ways to "win" or "lose" in the war with cancer? Here are a few I've come up with.
Physically:
Chris has overcome so much in the past year and a half. We try to focus as much as we can on the positive and we have some major ones... finishing dialysis, removing his trach. However there are daily reminders, often in the form of pain, that are a constant reminder. Constant chemo with only a week break at the end of each cycle is a grind. If there were an end in sight it would be something to look forward too, but having an incurable cancer easily steals away any hope. Chris has the heart of a fighter and it's amazing to watch even the little ways that his body continues to fight each day.
Emotionally:
A year ago both of us held things together surprisingly well. That's not to say we didn't have moments of sadness, fear or anger. We would take moments to let the tears flow, but then we would pick up the pieces and forge ahead. Luckily this year we have much fewer appointments to attend and a little bit more free time. With waning physical energy to do things, varying emotions all fight for attention. We try to give Joy priority, but it's easily outnumbered. Trying to focus on the happy memories and the things that we've overcome is a constant battle.
Mentally:
There is a lot to juggle and often I feel like my brain is running on overload. Trying to make sure he has all of his medications and takes each of them correctly is a battle. I've been able to make some improvements, but it's a lot to manage. Some medications change in dosages based on a blood tests, some are only taken at the start of the cycle, one he takes depending on his blood pressure, one is a shot. At a quick count its about 28 pills per day(sometimes more, sometimes less), from about 6 different pharmacies. I'm sure pharmacists see his list and are anxious, and worried about interactions. Remembering appointments, continued learning and research to understand the complexities of Multiple Myeloma, planning meals and groceries, remembering to take out the garbage, do laundry, pay bills. It's a lot to juggle. We're constantly talking with each other about the appointments and things on the to do list. Two brains, even a worn out one and a chemo one are better than one! On top of that working full time, my brain often struggles to keep up with all I ask of it. Miraculously it's been able to keep up so far, and with the busy Christmas season nearly through I'm looking forward to being able to give it a break.
Financially:
Without insurance we couldn't be fighting this battle. This year so far, 1.5 million dollars has been billed to our insurance! Even with almost two months in ICU and the chemo last year, that's more than double last year. Our portion has been much less than that, but it's also a constant battle of fighting to have things billed correctly. With chemo likely a permanent part of our life, each year when insurance resets we'll quickly reach our deductible. Plus the cost of co-pays and medications for the rest of the year. We've had help from others along the way which has helped us to stay current and it's alleviated much of the financial stress, but it's hard not to worry about the financial future. We are so grateful for both of our jobs that are understanding and willing to work with us. Working for both of us helps life feel a bit like normal,. Chris being able to work when he can (even at crazy hours of the night) is a huge blessing and distraction.
Awareness:
One thing many people would remind me of was that I needed to make sure to take care of me. It's always been difficult to find the time, but I've fought hard to be able to do so. Last year at the time there was very little time to do that, but slowly.... little bit by little bit.... we both are trying hard to beat out cancer for this one. One simple thing I've started to do is to take time to do my nails. It's something simple, but it helps me feel human. As well Sunday for me has really become a day of rest, where I take a break from as many responsibilities as I can and do what I need to recharge my batteries. One thing that has been missing from both of our lives the past few years is fun. There simply hasn't been a lot of time. One recent "victory" has been the revival of one of my all time favorite video games. A friend of mine suggested it as a birthday gift for Chris YEARS ago on the original Xbox. Chris figured out how to play it on our current one and the escape was magical. I typically hate and suck at racing games, but this one has so many different styles of play that it's loads of fun.
Socially:
In many of our support groups we hear of people and their struggles to not feel isolated or alone. A weakened immune system, of varying degrees, makes going out in public a risk. Unless you have lived the cancer life, many friends aren't willing to accept that you often have to cancel plans and friendships simply fall away. Having time to do fun things is also a challenge. We are so grateful for so many different forms of communication that help us feel connected with those even far away. Chris has some great friends both locally and online that frequently check in on him. I also am very fortunate to have some co-workers who I see almost daily who remind me constantly that we aren't alone. We always have enjoyed being at home, so that's a huge blessing.
Marriage:
Cancer and other difficult medical challenges have been the demise of many marriages. It's easy to understand why, it makes life hard. Sometimes impossibly hard. We've been fortunate that all that we've been through has brought us closer together. Part of that is because we try really hard to imagine what the other is going through, it's hard for both the patient and the caregiver. Chris however doesn't let a day go by where he doesn't thank me for all I did for him. I'm so grateful that this is a battle that we are winning.
Spiritually:
Facing death brings up a lot of questions about mortality and the belief in higher power. Our faith has sustained us and given us comfort. It's hard not to think "Why Us?" or "What lesson are we supposed to be learning?" Some people when faced with a deadly disease refuse to talk about what to do if the physical battle is lost. Always with a tinge of sadness we talk about what we can do to make things easier for me and what we can do now to make that difficult time easier. It's hard for both of us to think about, but it does alleviate some anxiety. Our belief that we are married not just for time but for eternity is a huge reason why I feel like we can talk about things because we know we will only be separated for a moment in time.
During our visit with Dr Sborov he told Chris that he needs to worry less and spend time living. I don't think he understands how hard of a challenge that is.
Battling cancer is one thing, but
living with cancer is another. With many other cancer's you battle, hopefully you reach a point where you achieve remission and finish treatment and then still worry about if it will come back. Sometimes reaching a set number of years where with each passing year the likelihood it will return decreases. . Sometime in the past few months Chris achieved "Complete Response". DRd is working and his myeloma numbers are normal. Some people battle for years to get here, so we know it's a huge milestone. Strangely it wasn't something even mentioned at a doctors appointment, but something we came across in their notes. In reality, nothing much has changed. Myeloma is a strange world.
Along with all the ways I listed above, I'm constantly trying to think of ways that we make some happy memories. Frequently trying to convince Chris to make plans with me to get away and do something fun. It's hard because almost every time we've tried to make plans we've had to cancel them. It's hard to look forward to doing something and then having to cancel because somethings happened or come up. Recently several complications have often led to setbacks and hospital stays with time needed to recover. But... for the next few weeks our goal is to really focus on the season. Finding time for fun things, enjoying some special treats and making some memories. Today after work Chris was feeling good enough that we went out for a date. Sitting in our car, enjoying our heated seats and some yummy food we talked about the events of our day. It was a "win" on the living front.
Learning to really "live" with cancer is a going to be a challenge. Focusing on and making time for other things means pushing cancer into a corner and trying to forget about it as much as possible. I likely won't blog again until next year, so until then have a Merry Christmas and Happy New Year... Wish us luck!
One of the side effects from being anemic is that Chris has been quanked. He often gets 10-12 hours of sleep at night, and still be exhausted and fall asleep during the day. Even though I constantly tell him not to worry, he always feels guilty that I'm off working and he's home napping. Or on my day off that he would be sleeping instead of hanging out. To help him get the rest he needs on my days off, I often would often hang out in bed reading books or watching TV to avoid waking him up. 
Chris's goal to "see past the myeloma" has included a focus to make some fun memories. In January his Kansas City Chiefs helped us with that goal with some EPIC playoff games. In February they helped again not only with playing in the Superbowl. Some secret elves made our house extra festive with the flags lining our sidewalk. 
Just prior to the game I said that they should win it with an easy to remember score our birthday's. As the game wrapped up, the final score was 31-20! We should have bet in Vegas! Chris has been on cloud nine and it's for sure a memory to last a lifetime!
This month we have a long trip to Vegas planned and we are crossing our fingers that we don't have to cancel it. The Corona Virus is making us question if we should go. For most people, it's not something to really even be worried about. But Chris happens to fall in the category of those who should be worried, and, well, probably the most worried. Myeloma is a cancer of plasma cells (a type of white blood cells). Plasma cells help you fight infections by making antibodies that recognize and fight attack germs. The most common cause of death for myeloma patients is infection. Not only does he fall into the "at-risk" population, but profoundly at risk. 
Ever since his diagnosis, when I go to work and interact with strangers from all over the world, it has made both of us a bit nervous. Without my job and it's insurance, we couldn't afford the treatment that is keeping the myeloma in check. The job that is keeping him alive is also now putting him at risk, I don't have the option to work from home. I'm holding tight to the fact that we've been OK so far. 
