The Language Around Cancer

We’ve all seen countless articles about how we should stop using “battle” and “fight” for people living with cancer. We are not “winning” or “losing”. I have no desire to be at war with my body or anything about my body. I remember very early in my treatment, I had been envisioning the chemotherapy coming in like an army to fight off the bad enemy cancer. And about 3 treatments in, I decided I hated that imagery so I replaced it with light and love coming in to drive out darkness and disease. I still do that. It just feels more peaceful for me.

Also, I am not on a journey. A journey is defined as “traveling from one place to another.” I am not traveling to some destination. I am living my life every day, as fully as I possibly can. If I were on a journey, you would see pictures from an exotic and beachy location.

So if it’s not a fight or a journey, then what should we be saying?

I’m not sure actually. I really struggle with what to say to people at the moment (people who don’t know obviously). I firmly believe that words are powerful, and affirming and envisioning a perfect, healthy body is really important, so I want to be careful about the words I choose. For example, I called my primary physicians office today and stumbled over leaving a message…

“I have cancer and a cold is creeping in.” Nope, I don’t have cancer, and I will not say that I do. I have to affirm that cancer is gone. It’s just how I operate.

“I am a chemotherapy patient with a weakened immune system so I need to see someone about this cough.” Well that just sounds stupid and is way more words than is necessary.

“I am in treatment for cancer…”  That’s a little better and what I finally said.

Other terms and phrases used often:

“I’m a survivor.” Well I’m probably going to upset some people with this one, but I don’t love that either. For starters, people assume that means you “beat” (see, there it is again, the “fight” nomenclature – it is SO deeply ingrained) cancer some years back, when in fact, many people use it from the day of diagnosis. It also implies “I lived through something that others didn’t.” And while from a definition perspective, that might be true, I just don’t like that separation of winners and losers. Maybe it’s just me. But it bothers me. It feels like the “losers” just didn’t “fight” hard enough I guess.

I also said “I’m living with cancer” for a while, but that sounds like I invited it in and we are enjoying tea together. Also not the imagery or assignment I want to give it.

I think I’m pretty good with words in general, but I’m telling you, this has me stumped. I think it’s one of the reasons I just prefer to be bald when I’m in treatment. The head speaks for itself and I don’t find myself having to explain why I can’t do something, or why I’m so tired or nauseated. Maybe it has more to do with all the negative connotations around cancer in the first place. I will say “I HAVE a cold” without even thinking about it, because of course a cold comes and goes and there isn’t this dreadful mortality rate attached to it. And there are chronic diseases like diabetes or high blood pressure – we “have” those and never think about that language. But cancer, that feels like telling someone “I have a fatal disease”, so no, I don’t want to say that.

Here’s what I do know. We have to be able to talk about it and support people with cancer in a way that is positive and affirming. We have to change the language. Perhaps as research continues to move forward, cancer will one day be viewed differently. I’m hp

 

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The Harsh Reality

My friend Jen called this morning and asked me how I REALLY feel lately. Then Sara Beth checked in too – and I answered them both honestly. Sometimes I do and sometimes I don’t. I had been toying with the idea of writing this blog anyway, but those calls became the motivation to put it down on paper. Let me be clear, this isn’t for sympathy. This is to hopefully help educate. I think almost everyone knows someone who has been through or is going through cancer treatment of some sort. And I think the more you know, the better you can support those around you. I also think that most of us aren’t really very good at telling you how we really feel. So, I thought it would be a good idea to provide some general information about what I know – chemotherapy, then I’ll tell you how I’m really feeling these days…

  • Not all chemo makes you lose your hair. Mine has been thinning a good bit, but it looks like I won’t have to shave it this time.
  • Treatment is cumulative. So yeah, the side effects can get worse with each additional treatment.
  • Infusion center days vary widely depending on the pre-meds and drugs. In the past, I’ve spent as little as an hour there and as much as 8 hours. This particular protocol takes about 4 hours.
  • Pre-meds seem to always include steroids and heavy duty anti-nausea drugs. Some protocols include Benadryl too. I miss that part. LOL.
  • Chemo tired is hard to explain. It’s not like “I’ve had a really long week” tired or even “I haven’t slept in days” tired. It’s walking through quicksand tired. It’s “I just ran a marathon without training” tired. I’ve never done that, but it seems about right.
  • Even on the really good days, you’re probably running at about 75-80% of normal energy. Some people probably don’t even get that high.
  • Pre-meds and meds to treat side effects have their own side effects. For example, Zofran is great for nausea. It also causes drowsiness, constipation, and headaches.
  • There are weird side effects too. I have joint pain and arthritis that is so much worse when I’m in treatment. Apparently chemo negatively affects collagen. So for me, I have terrible pain in my left foot and my arthritis in my hands and back is worse. And don’t even get me started on the issues with my voice/throat and congestion. Just know that the side effects go far beyond what you might know.

This chemo regimen is the harshest I’ve been on yet. I finally figured out that Dr. Benigno is treating this the same as he would a first time occurrence since they found cancer in those lymph nodes that were removed. And this protocol is a new one that has produced really good results at MD Anderson. But I feel pretty awful. I mean it’s really been tough this time. I used to have “Hyper Thursdays” when I had the first series of treatments. I would have chemo on Wednesday and the steroids would carry me through the next day. I probably felt better that day than any other. That’s not the case with this protocol. I feel horrible before I even get home. I start taking nausea medication right away when I get home on Thursday and am completely down really through Monday. I move from the recliner to the bed and back, sleeping at least half of the time. By today I’m feeling a bit more energy but still fighting nausea and probably will for another day or so. So in the end, I have 1 good week and 1 bad week. I hope that’s as bad as it gets but who knows.

Clearly, it’s not the best quality of life at the moment. But it’s temporary. And I believe it’s giving me the ability to live many more years. So yeah, it’s worth it. But I’m sure ready for it to be over. I’m halfway through now – just 3 more months, 6 more treatments. Counting them down…

I can’t close this out without thanking my support network. When it’s this hard, you really continue to come through for us and it really makes such a huge difference. Thank you for always always being there for us.

 

A Better Path

Yesterday was my birthday. It was a pretty chill day and other than the heart-breaking football game last night, I was alone for most of the day. It gave me a lot of time to reflect on life. And that usually results in a blog. 🙂

Here’s the thing, I think birthdays are different when you have cancer, and maybe forevermore. It’s no longer just to commemorate the day you were born. It becomes a complete celebration of another year lived, and hope for what the new year brings. And this marking of the passage of time is so important when everything is about chemo cycles and life expectancy. It’s important to pause and celebrate, even when some of the days have really sucked, even when you feel awful, even if you’re not sure what tomorrow brings, or maybe more importantly because of those things. I never really cringed about adding another year to my age, but our culture makes that to be a bad thing –  we’re “over the hill” and all the cards with cakes ablaze or hearing loss or sagging body parts. That’s also different. I couldn’t be happier to be 55. There were times over the last several years where I wasn’t sure I’d see 55. I am really looking forward to the excitement of being 75. And finally, it certainly becomes less about the gifts and more about the love and spending time with the people you love. Those are the real gifts in life.

A very wise healer told me recently that I needed to stop being angry at the cancer. I guess I didn’t really think that I was, but as it relates to my work, I can easily see it’s there. We have struggled starting a business while I have been sick and I’ve definitely been irritated and stressed about that. But she said, in the end, I don’t have to love the cancer, but I need to embrace that it has put me on a better path for my life. While I have often described my life as a series of always seemingly choosing the harder path, I can see that this is a better path. You always read those inspiring works that reflect on what really matters in life, often from dying and elderly people – and the conclusion for all of them is the same. Work less. Love more. Show compassion. Help others. Touch lives. Take risks. Live your dreams. It’s about the people in your life, not the things. Never has that been more true for me than now.

I am reminded on this birthday that the moment to celebrate is really EVERY MOMENT. Because life is precious and even in the darkest of times, you can find the light. You might have to look a little harder, but it’s there. And I am so very blessed with what I know to be the most fantastic network of friends and family by my side. That is reason to celebrate every day. I wish I had had this clarity of truth about my life without the disease to get me there. I really do. But I can’t argue that this is a better path. It’s most what I want to teach my son, and to leave behind a legacy of love first and foremost.

You Won’t Believe This…

There’s been another slight change of plans. Well, I say slight, and in the big scheme of things, it is, but to me, it’s pretty big.

If you recall, the initial plan was to do this chemo protocol for 4 months, wait 3 weeks then have the hernia repair surgery. I even blocked out that week on my calendar in March in anticipation of the surgery. The short story is that it’s now 6 months of chemo then wait 3 weeks for surgery. Why you ask? Well it’s just what Dr B wants to do. So guess what? Time for another mental reset. It’s so crazy how frequently the plan shifts some. Dara said maybe we should just stop planning towards a date but honestly I have to have that. I need an “end in site”. This chemo is pretty brutal and I was counting on today being the halfway point and then when I asked for clarification yesterday, he said at least 4 months, and since my immune system is so robust (my labs are always pretty good – things run on the threshold but never bad enough to skip treatments or need additional meds to boost me), he would likely take it to 5 or 6 months.

I was explaining to someone yesterday that this cancer is really different from something like breast cancer. There’s been so much research on breast cancer that they have really specific protocols for treatment based on a number of factors like cell type, stage, etc. Ovarian cancer is just not like that – lots of different approaches and I don’t know any 2 people who have had the same treatment plan. This particular protocol is what they have been using at MD Anderson as the initial treatment and they’ve seen good results. And the ‘standard’ for it is 6 months so ideally he wants 6 months. He is doing everything he can to keep this from coming back and I just can’t be mad about that.

But I can be disappointed, again. This hernia is now the size of a small melon or large grapefruit (Dara and I spent some time discussing a comparable shape and that’s the best we could do) and while the binder helps, it’s still rather painful at times and bothersome all the time. And it’s basically mid-2018 now instead of early 2018 when treatment will finally end. And also I can’t travel with the hernia so no road trips for another 5 months or so.

So there it is, another change, another extension, another mental reset. I’m rather good at it now – you know practice makes perfect. I guess this might not be the last time I have to do this too. I shouldn’t complain. I really have had more good news than bad with this over the last 3.5 years, and I’ve already lost one dear friend to this horrible disease. So I’m very grateful to be alive and cancer free! But it’s tough being in treatment this long, and having the end in site but moved out a few times. Some days I’m just tired of having to be strong, having to rise up again and again… just tired of being tired. In 10 years, these extra months of chemo won’t matter a bit and maybe they’ve helped me add another 30 years to my life. But this week I’ve earned the right to be disappointed and sad about this small change.

Suck It Up

After seeing a series of doctors (Dr. B, my surgeon, and a new surgeon), it’s clear I’m now on the “suck-it-up” plan as it relates to this “very large hernia”. The consensus across the board is that surgery should be scheduled after I complete chemo – 3 weeks after, which puts it into late March. I’ve already blocked out a week on my calendar for it. Of course, they all said if I couldn’t handle the pain, it CAN be done earlier. That’s like saying to me “betcha can’t do THIS”. Those of you who know me pretty much know my response to that kind of challenge. I’m doing what I can to help minimize the pain and am not opposed to the meds when I need them. They claim the bruising and swelling should get better and that will help, and the bruising improved some so hopefully that’s a good sign. And I’ve added a binder which seems to help some, but is much like trading one discomfort for another at times.

So, why the wait? Well I think it’s two-fold. First, this likely happened because of how chemotherapy weakens the body, so going into another open abdomen surgery with a weakened system is just more risky. Yeah okay I get that. And healing is much harder too. The second reason is what I am calling “the opportunity for an eyeball scan”. Dr. B is almost giddy about having an opportunity to take a look around in there – an eyeball scan is far more effective than a technological one. I really can’t be mad at him about that either. I mean, how nice will it be to have solid evidence that I’m cancer-free before starting into some maintenance?

So I’m at that place again – I GET it, and I support it, and I still don’t like it. I just feel like it’s been one thing after another for one thousand two hundred and twenty seven days (1,227 – it just seemed bigger to type it out in words). I think I know where I am and where I’m headed and then someone moves the goalposts. I mean the end result is still the same – CANCER-FREE, but the mental process is sometimes harder than the physical one. So once again, I’m processing through some anger about all of this – I took my days of self-pity and am once-a-damn-gain pushing forward because that’s what I do. OVER AND OVER AND OVER.

And still I rise. And still I embrace perfect health in my body. And still I accept and appreciate all of your love and support every single day. And still I am grateful for ALL of the blessings that are in my life because of this – things I wouldn’t know if this hadn’t been part of my path.

Seriously Unbelievable

Today I learned I have a large surgical hernia that has to be repaired. Yes, because apparently I can’t just cruise into “cancer-free” status without “just one more thing”. It’s baffling. And frustrating. And in this case, very painful.

I did really well post surgery. I even had coughing fits and I do like to laugh, so I strained those muscles pretty well. And I worked on strengthening to get mobile and feel better. This past Monday marked 9 weeks so I felt pretty good moving some furniture around on Saturday. Listen I didn’t put a sofa bed on my back and walk 100 feet. I slid around some chairs and a sofa all within a pretty small room, so it wasn’t much. And I had not even an inkling of pain. I’ve been a little congested of late, so I am coughing some – really not much at all. On Sunday I coughed ONCE and felt this searing pain in my belly and felt like something popped or shifted. Tried some ibuprofen and such the last couple of days because I knew I was seeing Dr. B today. I had a terrible night last night and woke up with a pretty large swollen area in my mid-section. If you have ovarian cancer and you see a big bulge, I don’t care if you had a clean scan the day before, you have a moment of panic and I did. But by the time of my appointment this morning, google and I had figured out that I had a hernia. It took Dr. B about 3 seconds to diagnose me (it was gross – you can’t see the protrusion when I’m flat on my back which I was so he held down part of my stomach and asked me to cough and when I did, he and his PA both said “YEP, there it is” because apparently it pops up) and quite frankly we were all relieved.

I remember Dr. A (my surgeon) had said a lot of patients who had Avastin end up with a hernia. I was off of it pre-surgery, but I had been on it for more than a year so that could have had an impact here. Regardless, it’s large and excruciatingly painful when I cough, sneeze, or blow my nose, and it is mildly painful just to stand and walk around. He really wants to wait until the end of chemo to have it repaired (February) and then they can just use the opportunity to take another look inside to confirm there’s no more cancer. So we’re going to try that. I’m honestly not sure I can manage the pain well enough to go that long, but I’ll order a belt or binder and give it a try. He said we could do surgery anytime if it gets worse or I can’t take it. I don’t even think it would push chemo out much if any. He just likes the idea of using a “belly open” procedure as a chance to take a look around. I don’t mind that a bit myself.

Yet another opportunity for me to say, but hey, it’s not cancer which is awesome. I am pretty irritated still (and again) about that. But I am also grateful it really isn’t cancer. My CA125 came down from surgery really fast – I’m at a 12 right now, so that’s excellent news. I try to remember that when I’m bone tired and nauseated from these drugs, and when I see and feel this painful bulge. Like I said last time, I’m so ready to lose the phrase “but at least it’s not cancer” and just have some real smooth sailing. That’s coming I know.

Ototoxicity

Ototoxicity – it’s a big fancy word that I am learning a lot about this week. In short, some chemotherapy drugs can damage your inner ear which ultimately leads to a hearing loss (ototoxicity means “ear poisoning”). And in every situation where chemotherapy ototoxic drugs are discussed, it states “Cisplatin, and other chemotherapy drugs” which shows you where Cisplatin falls on the risk scale. Carboplatin is also an ototoxic drug and I’ve had a lot of that, so it’s not surprising I do have some hearing loss. Dr. B referred me to an ENT doctor, so this week I had a hearing test and a follow-up meeting with the ENT to discuss my level of deafness. In short, I have the hearing of a 70-year old. It’s not like it was surprising to me – I struggle in many situations, but I’ve just flat refused to do anything about it because I’m in my 50’s. But in the end, it isn’t going to get BETTER, and the longer you put off hearing aids when you need them, the less effective they will be. I didn’t know that before, but he explained the science and it makes total sense. So, next week I have a consult with an audiologist and will select hearing aids and pray that insurance will cover at least SOME of the cost since it is from chemotherapy damage. Also I have to go back every month for a re-check to be sure it isn’t creating too much of a problem. If it looks like I’m headed to the 80- or 90-year old level, Dr. B will likely replace it with some other drug. After all, this isn’t a life saving measure for me – it’s insurance.

I don’t love it. And I’m worried about how it will impact singing in a chorus. But there’s really nothing I can do about it. So the chemotherapy saved my life and I need hearing aids because of it. Would you trade perfect hearing for your life? Every. Single. Time. End of discussion.

Tomorrow is my second infusion with these drugs. I gotta say, it wasn’t my favorite. We enjoyed our time at the beach, but I was definitely feeling the impact. It’s such a balancing game between nausea, constipation, and diarrhea (keeping my commitment to “keep it real” here), with side effects from chemo and side effects from the drugs used to help offset side effects… On any given day, I am guaranteed some level of discomfort, at least until I find the right cocktail of medicine to help alleviate it. And lately, I have the most horrible terrible awful case of the piles (it sounds so much better than the alternative and more familiar terminology). I’ve been through all the solutions and treatments and have my ups and downs with it, but listen, that is some real pain. And you know, just one more damn thing. It’s how I feel some days, just one more thing. But you know what it’s not? Cancer. That’s what. (But I definitely don’t recommend googling “hemorrhoids” and “cancer”. Don’t do it.)

So that’s about it for this update… deaf with the piles, and maybe headed for bald again too. But I’m cancer-free. I’m not gonna lie – some days it’s harder to keep coming back to “but I’m cancer-free”. I’m looking forward to days that don’t have that “but” in front of them. Right now, it’s still there. And then I feel guilty complaining about it because I should just be grateful that I’m alive. And I am. But I’m surely ready to get back to a better overall quality of life!