Daniel has a rare form of anal cancer. His mental health advice is spot on. It’s important to take care of what you can control so that you don’t spend as much time thinking about what you can’t. Join CancerLyfe to meet Daniel and others with cancer.
#Lyfebulb #CancerLyfe #nowwhat #RareCancer #JoinCancerLyfe #AnalCancer
Part of my goal with ABSOT is to create a resource for the newly diagnosed to understand what lies on the road ahead. I detailed nearly every moment of my chemotherapy treatments and began writing a series of posts of how recovery was going after finishing chemo. I wrote these posts at the two months, five months, and twelve months post-chemo marks, respectively. However, after the last one, I really dropped the ball on continuing the series.
But today marks thirty months post chemo, or two and a half years for people who don’t count anything over a year in months. Looking at you, new moms who insist on telling me your kid is 16 months, 3 weeks, 2 days, and 6 hours old. Your kid is one. Move on.
But I digress. True to the fashion of the other “Months Later” pieces, I’ll give an update on how my physical and mental recovery, after facing chemo, has been going since the last update.
Physical Healing Remains Strong, With A Few Slight Problems.
In the “Twelve Months Later” piece, I mentioned that I wasn’t feeling any nausea or fatigue anymore. This remains true today. I haven’t vomited at all since the ‘BRATman Begins’saga and I would even venture to say I’m in the best shape of my life.
I also mentioned in that post that my hair fully grew back and I was contemplating a new style. I’ve finally decided on a new one… a year and a half later. Stay tuned! Another holdover from that same post is my disdain for plain water. While I don’t hate it anymore, I still prefer it with lemon – or even a lime if I’m feeling wild.
However, a number of new strange symptoms have cropped up in the past six months or so. Mainly, I’ve been experiencing excessive sweating (even in cool temperatures) and had some weird pains here and there. So far, blood work has ruled out thyroid or hormonal issues, and I’ve had an ultrasound that I am still waiting on the results (as of this publishing).
Overall, aside from these new symptoms, I would be confident in saying that my physical health is 99.9999% back to normal – a full 0.0009% higher than in January 2018.
Mental Health Continues To Ebb And Flow.
I still have some slight difficulties with memory and attention, which I credit to chemo brain. Over the weekend, I participated in an online study that confirmed my short term memory and concentration are below average and my spatial awareness and ability to split my attention are right on the money. Interestingly, my ability to quickly scan and process information is actually above average. However, I don’t have a baseline to draw from originally, so who knows if that’s actually due to chemo brain, “old age,” or undiagnosed ADHD?
Worrying about scans is a constant, too
Probably the single biggest difference between January 2018 and now is mental health fluctuations. Back then, after realizing how I was experiencing depression, I had just started on antidepressants. At first, they didn’t seem to help too much. Finally the correct dosage kicked in and has been helpful in keeping me balanced since then.
Recently, I’ve noticed that I’ve been struggling a bit more than usual with my mental health, so I’ve begun seeing a therapist who I’ve seemed to connect well with. I’ve gone twice thus far, and we’re working on a roadmap to help me navigate the sea that is cancer survivorship and life. In a few months, I’ll probably write a more detailed post about therapy and how it’s been helping.
All in all, my mental health is doing much better than it was right after facing cancer, but it’s always in the forefront of my mind.
I’ve Said It Once, And I’ll Say It Again: Being A Cancer Survivor Is Complicated.
I firmly believe in the value of sharing my full story in hopes of letting others know that it’s ok to not be ok. While this piece was largely the same as the “Twelve Months Later” piece, it’s important to share these moments so others know what to expect on the road ahead.
It’s also critical to note that my left testicle has still not grown back, even after all this time.
Though I still hold out hope, the local hospital has told me that, “infusing your DNA with that of a salamander will not help you to spontaneously regrow a testicle and for the last time, please stop calling us unless you have a true medical emergency.”
A Self Exam Is How Most Cases Of Testicular Cancer Are Detected Early. Click The Image For Video Directions Or Click Here For A Larger Version
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Save the boobies
Save the Tatas
Save the Headlights
Not going to lie I have used some of those then I got breast cancer and that changed. There is a lot to say about this on all different levels, shall we start at the top?
Doctors appointments, we instantly loose our sexuality at the endless doctor visits where they are poking and scanning and injecting our breasts. We get used to taking our shirts off in those appointments and it has NOTHING to do with “saving second base” and everything to do with saving the person diagnosed. We lose modesty and become robots in this wicked game. At the moment when you hear those words “I am sorry you have cancer” you are trying to save yourself from death. The doctors make appointments to have your breasts removed, amputated if you will and you want us to think that is sexy? What the hell? We are removing, disfiguring and altering our breasts not saving them.
When someone goes through a sex change they are put through counseling to make sure they can handle the changes about to happen. When we are diagnosed with cancer you are lucky if they even discuss talking to someone. When you are “finished” and say you are depressed they wonder why? UMMMM you just took our breasts, sent us through treatment and for many remove uterus/cervix/ovaries and there is not counseling like those who basically have the same things added and removed. Add the fact that cancer is involved and let me tell you we are not thinking about “saving the boobies” we are worried about finding our self in this mess and saving us. How degrading to us that it is made sexual?
Here is a thought when you make this about women you alignment this group that gets breast cancer too, MEN! We have a male population getting breast cancer and we advertise this as women’s disease. Men are diagnosed late in stage and dying yet we make this for the “girls”. I call bullshit on this. We as a society have embarrassed men so much about getting breast cancer that they do not even want to discuss this with their doctors. Wake the fuck up people this is 2015 it is time for a change!
The emotional aspect of breast cancer is a huge factor. Reminder breast cancer effects us and our hormones big time. I am not talking about the sexual drive hormones but shit what the hell is my body going through. We are women are beautiful, curvy, smart and powerful then we take off our breasts and remove all that “makes” us girls and expect us to embrace these sexy campaigns? How does that even makes sense?? Do you have any idea how all this change effects our body image? We watch and sob over the loss of our breasts like a death. We loose so much from this and gain a new perspective and sex kitten is not one. Fact our breasts no feeling, nothing! So sexy and wanting to ‘save the tatas’ is just stupid!
“Go braless to show support for breast cancer”, ummm excuse me. Let me start with the fact that most of us can not even wear a bra. The scars hurt, we can not find one that fits, and why bother! Second how the hell does that show support? A sexy ad with a tiny girl taking her bra off is not breast cancer awareness it is taking your damn bra off! There is no education in that campaign at all. Did we forget that people die from this? How disrespectful! Did you know this ad comes out every year on the one day Metastatic cancer is highlighted?
Which brings me to my biggest point! Those with metastatic breast cancer are not saving their boobs, they are dying and trying desperately to save themselves. Could society be more disgusting and disrespectful to this dying group? There will be 516,000 deaths as a result of mets and we think ads like “save the headlights” are helping? No they are not-they are muddling the voices that need to be heard. The metastatic community needs all of us to stand together and say “SAVE THE PERSON”. Those with metastatic cancer need our voice, they need to be heard loud.
Breast cancer is not tied in a pretty pink ribbon. It is filled with anger, pain, side effects, mixed with love and support from those who care and sometimes death-sex ads have no room in this. We need to stop this ridiculous campaigns and use the best ad we have, US! Show the men and women that had breast cancer, show the pain the scars, the truth. How empowering to those DX, how validating and real would that be? Maybe if we took the time to remove the sexual connotation of this non-sexual disease and focused on those dying and hurting we could actually get somewhere! A wise friend recently said if we stop those from dying and control the metastatic community we could actually get somewhere. She is right and I know CJ would never try to take my tiara. That is not sexy it is just me, the new after cancer and before me!
The last thought is this Dr. Susan Love quote. Stop thinking of cancer patients as success stories when we can only think of us as who we were and how we ave changed. Maybe if we start there we would remove this sexual crap that seems to “sell” such a painful disease. Time to start seeing the difference breast cancer does to us and not making it about the degrading part that we are not getting back.
Dr. Susan Love on the collateral damage of cancer: “As physicians, we look at patients with cancer and compare them with people who have died, and pat ourselves on the back because they are alive. But as the patient, you are comparing yourself to how you were before you were treated for cancer. That is the big difference”
Originally posted here
Other than having MS, I’m generally a pretty healthy person. I seldom get sick because I’m so careful about how I live my life. I exercise, I eat well, and as my former students would attest to, I’m slightly germ-phobic. I don’t consider that a negative trait because I’m sure that’s how I remain healthy. But one thing I was told early in my journey with MS is that having one illness does not preclude me from getting others. It’s something I filed in the back of my head somewhere and have only recently discovered how true it is.
As a woman in her 40’s, I am always on top of my wellness visits with all of my doctors. After all, I am a rule girl. I do my full body check with my dermatologist every year, get an annual physical with my primary care physician, visit my ophthalmologist once a year, see my gynecologist annually, and, of course, I get my mammograms. I have had irregular readings on my mammograms in the past, which have always revealed nothing unusual upon repeat scans.
So this year, when I was told that they would like to take some further imaging and ultrasound if necessary, I didn’t panic. Why would I? Offering full disclosure here, I have scar tissue from a breast reduction and being called for follow-up mammograms is not unusual under these circumstances.
This year, unlike past years, I was told that I should see a breast specialist because the mammogram and ultrasound revealed irregularities. I still didn’t panic because I’m so used to visiting doctors and specialists of all sorts, thanks to MS. When the doctor examined me, she didn’t feel anything but she did see what the radiologist had seen on the films from the mammogram as well as on the CD of my ultrasound. When she told me that I needed to have a stereotactic biopsy, I still didn’t panic. She explained that most likely it was nothing, and if it was anything, it was stage zero and very treatable.
The moment of panic came when I walked in the room for this biopsy and saw the table that I was going to be lying down on during the procedure. (Think: operating table with a hole in it where I was to lie face down with the appropriate breast in the hole.) To be fair, it wasn’t scary at all, and the doctors and nurses did everything they could to make me feel as comfortable as possible.
After the procedure, I was told that I would hear my results within 4-5 business days. The timing was tight because of the holiday falling smack dab in there. I debated with myself endlessly about whether it would be better to hear before New Year’s Eve or continue to not know anything until after the holidays. Ultimately the choice was not mine, and I got the call on the eve of New Year’s Eve.
With my sister on one side of me and Bruce on the other, I sat and listened to words I never expected to hear: it’s cancer. I promptly scheduled an appointment with the breast specialist for her first available appointment in order to discuss the biopsy findings further and also to come up with the appropriate treatment plan. As of the publishing of this entry, that appointment has not yet happened.
It’s a weird feeling to hear this kind of news. Scary, of course, but also relieved that I am a proactive patient and this has been caught early with a very positive prognosis. Still, I feel like I’m somehow living someone else’s life even though I know full well that having MS doesn’t guarantee me immunity from other illnesses.
One thing I have never done is ask “why me?”, not referring to Multiple Sclerosis, and not in this situation either. The truth is, that I believe in the universe, no matter what it decides to dole out to me. By overcoming obstacles in our path, we are made stronger. When I was diagnosed with MS, I never questioned it, and my journey has brought me many gifts and my mission has become more and more clear the longer it has been a part of my life.
So here I am, starting the new year, ready to fight another fight. I’m not sure what the universe has in store for me, but I do know that I would not be given anything more than I can handle. I also know that somewhere along this next part of my journey, my purpose will become apparent just as it always has in the past.
The lesson for all of us here is the following: sulking, questioning, and negativity are all a waste of our precious energy. Instead, let’s use our energy in productive ways. I, for one, propose a toast to all of us warriors out there, fighting to overcome whatever physical or emotional obstacles we are faced with. Grab a glass of lemonade (half-full, obviously), and be grateful for your blessings as well as your challenges, because both are a part of living a full and rewarding life. I’m looking ahead to the future, cancer and all, and I can’t even imagine how much stronger I will be next year at this time. Cheers!
The other day a friend sent me a text asking “what is the one thing we wanted from people when you were diagnosed?”. I loved that she asked this years later not because it doesn’t matter anymore but because she still cares enough to be thinking about it. That to me says a lot because the truth is that after the DX we still are living through this every damn day. I still have doctor appointments, I still see my scars and I still think about it coming back, so her question meant the world to me. I often post and blog about “what not to say or things people do that they should not” but hardly ever do we talk about what they got right. I think people are looking for what to bring or what to drop off but honestly we just want to be normal for a fleeting moment. We need that little slice of normalcy when our world is being turned upside down.
The truth is not all the people in your life can make you dinner or take your rotten kids. I learned that from another good friend. One of my BFF’s said to me “Look I can not cook for you and you have too many damn kids so I will take your picture.” At the time I remember thinking “why the hell are we doing this and what the hell are we going to do with them”, well that is all history now. Point is that was what that friend could do for me. Another friend came over and just vacuumed, she said nothing to me just vacuumed. A few of my close friends came by when I was all drugged up and watched crappy movies and laughed and that was wonderful. Some people brought food and took the kids all super awesome. Some stayed away too which I do understand as well but that was for them not for me.
The best thing anyone can do is just be. Be who they are on a regular and not alter that in your life. Maybe that is holding your hand and saying nothing, or dropping off paper products but not staying, or simply taking your kids to school. The fact is when you are going through crap it is really hard to ask for help but you need help so when people just do it the results are a win win. We need so much but require so little. A hug, a hand to hold, a shitty joke to laugh at, inappropriate socks, a cure of cancer-any of those will do. But do something cause doing nothing just hurts. Do not make the person struggling reach out and ask, jump in and be the awesome friend you are. Sometimes they just need their tiara shined, it is that simple.
Going through chemotherapy can be challenging. Trust me, I speak from experience. Here are 10 items I wish someone had told me to bring when I went for chemotherapy. It would have made the experience easier for me.
10 ITEMS YOU SHOULD TAKE WITH YOU TO CHEMO:
1. A good attitude – You don’t want to be in this situation, but here’s the thing, you are. You need to have a good attitude. I know it’s hard, but try.
2. Layers of comfy clothing – The room will probably be very cold, kind of like an airplane (Maybe you could pretend you’re on an airplane going somewhere fun? Think of the chemotherapy chair like sitting in first class.). Even if it’s summer time, make sure you bring a sweater or jacket. The chemo can change your body temperature, so being able to shed a layer or put one on is helpful. Warm blankets will be offered and I highly recommend getting one, or many.
3. Warm socks – I always took my shoes off, snuggled under the warm blankets the hospital provided and put on cozy socks. Wear shoes you can slide into easily in case you have to go to the bathroom, which you will probably need to do. During chemo, a ton of liquids are pumped into your body and they’re going to have to come out eventually.
4. Something to keep you busy – Take your journal, knitting, crocheting, adult coloring books, crossword puzzles, reading material or whatever else inspires you or holds your attention. The key is to try to distract yourself. Do not focus on any of the side effects. The nurses will watch you closely, and should you have a reaction, which probably won’t happen, they’ll know exactly what to do. If you start to feel strange or something seems off, don’t hesitate to tell your nurse, but don’t sit in the chair and worry.
5. Chapstick – Or something to put on your lips.
Take items to chemo to help you relax.
6. Snacks – Bring snacks such as crackers, bananas, sliced apples, applesauce, healthy muffins or breads. Don’t eat anything rich or bring foods with a strong smell. I also wouldn’t recommend foods that are too sugary. Don’t let your stomach get empty but don’t eat too much either. It’s kind of like being pregnant. Except it’s not. Peanut butter crackers became my best friend.
7. Technology – It’s nice to have earphones and your device so you can listen to music or podcasts or even watch a movie. Ask about Wi-Fi before you start chemo. You might not have access.
8. Something to drink – Take a large cup with either water or hot tea. I always took a large Swell bottle with my favorite tea. This worked great because it would stay warm during my entire treatment. I was usually cold, and having a warm drink was soothing. While your hospital will probably offer water and other drinks, it’s nice to have a large cup so you don’t have to keep getting refills. Make sure you drink a lot, even if you aren’t thirsty.
9. Mints – Or hard candy, especially peppermint.
10. Make sure you can see – Don’t forget your glasses. If you wear contacts, you might want to take them out if you get tired (you will get tired) and want to sleep (you will want to sleep). Your glasses will enable you to see when you wake up from your nap. If, or should I say when, the drugs they administer to manage the side effects of chemo make you feel sleepy, don’t fight it. Let yourself sleep. The time will pass by faster.
REPOST FROM: CRAZYPERFECTLIFE.COM
Originally posted on Booby & the Beast
Sometimes the world feels upside down. It can be scary, but a friend once told me scary isn’t always bad. There is fear in letting go, in going beyond the edge of what our minds tell us is safe, in exposing our deepest vulnerabilities, our soft bellies.
My world has certainly felt upended — over the last few years since my diagnosis changed, yes, but also very acutely over the past few months. Is it the alignment of the planets? A midlife unraveling a la Brené Brown?
‘Many scholars have proposed that the struggle at midlife is about the fear that comes with our first true glimpse of mortality. Again, wishful thinking. Midlife is not about the fear of death. Midlife is death. Tearing down the walls that we spent our entire life building is death. Like it or not, at some point during midlife, you’re going down, and after that there are only two choices: staying down or enduring rebirth.’ — Brené Brown
I suspect the latter is closer to the truth. Having already faced my mortality head-on, the remains of my walls feel as if they’re crumbling, and the question staring me in the face is what is it that you’re going to DO with your second chance? How are you going to SERVE? As I begin to re-engage with the advocacy community, I have felt a yearning for something…more. A greater impact and deeper meaning to the work I do, which, let’s face it, most days just involves laundry, meal-planning, and entertaining a nap-resistant toddler. There is purpose in that, don’t get me wrong. But I am exploring options for shifting the balance outward a smidge.
Balance doesn’t always come easily. Case in point –>
I have also been intensely focused on the mental health side of my cancer recovery these past few months. And HOLY SMOKES, you guys. I mentioned that I was exploring EMDR, a type of trauma therapy, and I promised to write about it…four months ago.
The sessions have been nothing short of intense. This work is not for sissies. Each hourlong appointment passes in what feels like just a few minutes. Every single time I am jolted back down to earth when my therapist tells me it’s time to wrap up. I keep feeling like we’re just getting started. Then I have weird dreams and cry at random for a few days, and I call my closest friends and ask why adulting is so damn hard sometimes. DM me if you know the answer to that.
In our first session, she asked me about my trauma, and I talked about cancer. I mentioned in passing how the sound of our bathroom exhaust fan makes my chest feel constricted and my heart race, and THAT is the snippet she wanted to focus on. I still don’t know where that angst comes from, but my therapist asked me when else in my life I have felt that way. And some things came up. BOY, DID THEY COME UP. We are working through anxieties that have nothing to do with cancer yet. The unraveling is happening.
In an effort to augment my therapy appointments, and in light of Quinn’s existential concerns of late, I’ve been meditating regularly, hiking a couple of times a week, and trying to make it to yoga on Sundays. My kids have started their own at-home practice.
This weekend, the yoga instructor, Beau, started off the class as he usually does, by imparting some wisdom, some food for thought. He said he wanted to talk to us about sharing. How he gets to know his students pretty well, that we share things with him. He said he had been teaching a class earlier in the week and two of his students were in the front row, next to each other. And he knew they were both facing some pretty tough things in their lives, and the kicker is they were both going through the same hardship but neither one knew it because we don’t always open up to the people around us. Then Beau talked about a video circulating in the CrossFit community about one of their own coming out as gay, how the response to the video shows humanity and love at its greatest and most accepting, and how sharing can lead to that. I’ve seen that here, in this space, how a community can lift a person up when they feel at their most terrified and exposed.
Beau ended his little talk by asking us to share, if not our fears and vulnerabilities, to at least share our gratitude. I haven’t talked about my mental health much here because so much of my recovery is still in process — but then I’m realizing it may always be, so I should get to discussing it sooner rather than later. I should share, trusting in this community, and that the ground won’t be as far away as I think. If I fall, I will stand up again. You guys will help me.
Fine. It’s a word I’ve come to mostly despise. As in me posting my 30th chemotherapy session on Facebook, and a friend from college commenting, “It will be fine.” I called my best friend sobbing; “Of all of the things that having poison pumped into your veins for the 30th time isn’t, it’s fine.” (By the way, that was 25 chemos ago…)
Or as in a colleague seeing me at the grocery store and asking, “How are you doing?” I replied with my stock response, “I’m hanging in there.” And then she says, “But you had a clear scan, so you’re fine, right?” I couldn’t even deal with that, so I just responded, “I wish it were that easy.”
Or running into a neighbor at breakfast, and her celebrating my recent chemo break, which has been nice. She asked, “So how are you doing?” I said, “I’m using this time to rehabilitate my life from all of the damage from cancer and chemotherapy.” She stared at my blankly, threw her hand at me, laughed, and said, “Well you look great, so I’m sure you’ll be fine.”
I don’t provide these examples to diminish the good intentions of well meaning, caring people. I provide them to illustrate the complexities of cancer and the fear that cancer evokes. To be blunt, people either have you “dying” or “fine.” If people are concerned that you’re dying (a metaphor for existing in a very fragile state) then you get cards, texts, calls gifts, and herculean efforts of support. If you’re “fine” (a metaphor for magically cured), then you’re off their radar – compartmentalized into the “I don’t have to worry about her, so I’m moving on to my next thing – like how to get my kid to soccer practice.”
THE GOOD, THE BAD, AND THE UGLY.
To address the fear part: Cancer IS about the scariest word in the English language. You don’t want it, you don’t want to hear it, and unfortunately a lot of people don’t want to be around it. My heart always goes out to my atheist/agnostic cancer warrior friends who post on social media about their complications, and they get the comment of “Prayers.” Unfortunately, in their world, prayers don’t do much good for them. I’d much rather see a comment of “Meals” or “Laundry” or “Errands,” meaning “I won’t offer you prayers since you don’t acknowledge those, but I WILL offer you meals, laundry, or errands.” It seems like any of those three would go a lot further for those folks. Is it easier to just say “prayers”? And then some folks don’t have to deal with the ugliness of actually being around cancer and witnessing first hand its deleterious effects? Is it plain and simple a cop out? I’ve been blessed and fortunate to have received all of the above, and all have worked wonders for my recovery. I just think that the contribution should suit the one in need. And being a true friend means knowing that person’s belief and value system intimately enough to give them something that would actively promote their healing.
It leads to a larger discussion of dealing with good news vs. bad news. We see on social media that images of puppies, beautiful people, and joy get the most “likes,” while suffering, despair, and despondency get crickets. I’ve seen this first hand on my posts. When things are good, everyone is happy. When things are bad, no one knows what to do and they panic. Panic most always leads to ineffective behavior or even no action whatsoever. When I post bad news, and I get zero response, I feel lonely, unloved, and abandoned. What bridges the gap? Education. I used to get angry and frustrated. Now I use this as an opportunity to educate. Don’t do what’s easy – step up, show up, and do what works.
WHAT YOU SHOULD KNOW…
Let’s go back to cancer. Here are a few basic need-to-knows about cancer: first, it’s NEVER fine. It is insidious, and a cancer diagnosis stays with you for life. Yes, you celebrate milestones of getting past it at its various stages, but the fear of recurrence is always with you; every second of every minute of every day. AND the physical, mental, and emotional effects of pumping actual poison (or radiation or cutting up your organs) into your body to eradicate the cancer NEVER go away. They say 1 year of chemotherapy ages you 10 years. Well, folks, I can personally attest to that factoid.
To review my examples, what should these people have said? About the 30th chemotherapy session: “I know they never get easier. I am thinking of you today.” About the clear scan: “That’s great news! Hope it continues to go well!” About rehabilitating my life: “I can’t even imagine (or if you are a fellow survivor), I understand. Hope every day you feel stronger!”
More people are battling cancer and thankfully more people are surviving cancer than ever before. Cancer totally sucks but coming together to seek a deeper understanding of this disease and how we can best know how to help those in greatest need can surely bring us all “closer to fine.”
Originally posted on Stacy’s blog.
Jessie and I are colleagues on an Oncology Patient Council with a pharmaceutical company and are sharing some of our experiences, but specifically some of her unique challenges dealing with smoldering multiple myeloma.
As oncology patients, we have benefitted from the amazing technological advances made in the treatment of cancers, including immunotherapy, radiation therapy, and chemotherapy. The pace of change is truly astonishing, but early detection remains critically important. Early detection is turning on the light in an otherwise dark room. It better defines the contour of the space, and though we may not appreciate all the unique medical challenges to an individual patient, at least our medical team has a greater understanding of these challenges.
But does early detection warrant early or immediate action? As with any race, the instructions are often clear – “On your mark, get set, and GO!” However, there are situations where the most prudent and race worthy strategy may be different. As the tortoise taught us, we can be more successful by doing things slowly and steadily rather than by acting quickly and carelessly, but both the tortoise and the hare started acting at the same time. With cancer, patients are overcome with a feeling of urgency, the need to act right now. When dealing with cancer, there are situations where the best strategy may be “On your mark, get set and… WATCH & WAIT!”
Wait? That idea probably seems foreign, and perhaps elicits ideas of complacency or passivity. However, there are three common situations where ‘wait and watch’ is a compelling approach:
When a cancer is slow-growing and there is a low-risk of progression.
The most common reason for waiting is when a cancer is slow-growing and/or has a low-risk of progression. Indeed, for some types of cancers (e.g., certain types of prostate cancer, thyroid cancer, and some blood cancers), research has demonstrated that treating early does not impact survival when compared to close surveillance.
The need to balance the disease and potential side-effects associated with treatment.
Another reason to wait is to monitor disease progression and determine the best time to start treatment. Often the drugs used to combat the cancer come with significant risks and/or side effects. If the disease is stable and not yet causing any significant damage, the patient can continue living a relatively normal life while being under close observation/monitoring for any disease progression.
When innovation and advancements in treatment that could be transformative are near.
A final reason to wait is to monitor advancements in treatment. A patient may hold out hope that a new treatment may be better tolerated and more effective in fighting the cancer, but this approach must be thoroughly considered; after all, when considering buying a new cellphone, the next generation can sound so intriguing that a buyer may decide to delay her purchase. Ultimately, she never buys a new phone, always waiting for the next shiny version coming soon. While waiting is standard for some types of cancers, it is more controversial for others, including some breast cancers. But in the case of smoldering multiple myeloma, waiting has been the standard of care, with more recent research focusing on early treatment, determining when to start that treatment, and identifying what is the best frontline treatment at that stage of disease.
Fundamentally, I believe there is one essential driver – the quality of life for the patient (and caregiver), and I must balance both the short and long term impacts. This may sound a bit too simplistic, but it is far from simple. Like a juggler, I try to maintain a degree of equilibrium. I need to focus on each individual ball, but also on all of them at the same time. How soon might the disease impact my current quality of life? And how significant might that impact be? And if/when I start treatments, what should I expect? Will the side effects associated with the treatment itself dramatically impact the quality of my life? And for how long? And what about the disease itself, will the treatment push the disease into remission so I only need to deal with treatment associated side effects for a set period of time, or will these treatments be ongoing, becoming my new baseline for the quality of my life? And of course, my ‘full range of vision’ needs to watch for new developments just as a juggler must be prepared to add a new ball or change the pattern of the routine.
This state of change brings challenges to the surface for many smoldering myeloma patients. As recently as 2014, the criteria for starting treatment shifted. Prior to that, end organ damage was a necessary symptom for initiating treatment (i.e., CRAB criteria, see diagram). Now, three additional indicators are used to determine when to start treatment (i.e., SLiM CRAB). And even more recently, in 2019, new criteria involving three lab values were released, providing a predictive model for high risk of progression within two years (i.e., 20-2-20). These advancements are important to those living with smoldering myeloma, but they also create questions regarding when to start treatment. With many cancers, the answer is clear: a diagnosis is received and the race starts. In the smoldering myeloma world, staying at the starting line is often the best option, but it comes with uncertainty.
So, how do I as a smoldering myeloma patient take best advantage of this wait time? Clearly, I need to work with my medical team and establish an observation/surveillance approach that keeps me and my team informed and provides the real-time data to decide when to start the race. In addition, I need to constantly educate myself in both the disease and research being conducted. It is a challenge to monitor the research space, but I encourage patients to find a method to keep up with the latest advancements, while partnering with the appropriate medical team. It is important to keep in mind that many local oncologists and hematologists have a very small number of myeloma patients (typically under 2%), so it makes sense to find a specialist doctor who has a significant focus on the myeloma space for the latest breaking innovations. These specialists are particularly helpful in monitoring and advising me in the clinical trial space (of course, individual patients must determine if they are willing to participate in a clinical trial). These clinical trials are often the source of breakthrough treatment opportunities in myeloma, though they still must be tested.
The challenges during my ‘wait time’ are physical, mental, and emotional. The physical aspects are relatively straightforward as my medical team and I set out a monitoring schedule of lab visits and checkups. These are time consuming, but manageable. Mentally, I am constantly questioning my progress – more lab results, new treatment options, my overall health – in search of a definitive sign that the race should start. The emotional aspects, however, are the most challenging. I am overwhelmed with fear and doubts about how my life has changed, and uncertainty about how my life will change once the race starts. It’s a continual mental challenge to consider the path ahead, and it takes constant focus to live for today and try to maintain a mental balance that is life-affirming in the moment, while also preparing emotionally for the future when treatment starts and life is upended even more. I also worry about burnout as I can’t help but obsess about the road ahead, not just when it will start, but did I make the right decision on when to start the race and what will the journey really be like. Finally, I must be cognizant of the emotional peaks and valleys, and learn and implement effective regulation techniques for managing these variations.
Of course, the journey is never simple. It’s possible that members of the patient’s care team may disagree on when it’s time to start treatments. What does a patient do in this situation? Realistically, I am probably the least qualified to make the decision. In this situation, I think the patient must be very proactive. The patient should require a joint meeting of the medical team so that everyone can hear why the doctors differ. Maybe one doctor can convince another, but at least everything will be transparent and on the table for the patient to consider. Of course, the patient can also seek another opinion of someone expert in myeloma to ‘break the tie’ as it were. The ultimate decision resides with me, and my team must align behind the path chosen.
As hopefully is apparent, the watch and wait approach is much different for patients than the typical cancer diagnosis. The immediate shock of ‘you have cancer’ still jolts, but my world isn’t instantly and completely upended as no immediate action is required of me compared with most people receiving the diagnosis. Yes, the rest of my life has changed, but just a bit more slowly. I often wonder which is preferable. On your mark, get set and Go is so decisive and action oriented. However, I typically land on the diagnosis with watch and wait approach. But there are challenges in this situation, as well. And depending on the length of the wait, new thoughts and perspectives emerge. Yes, I obsess about the disease, but it also provides a time of introspection – to learn more about who I am and what my place in the world is. This type of diagnosis is a perspective-shifter as I become very focused on my quality of life. So, on my mark, get set and….