Just remember before you read this…..it is for fun only.
Yup. It’s started already. One little diagnosis of cancer and everyone thinks you are immediately transformed into a broken china doll that can’t do anything for herself. I swear to God even the dogs treat me differently. Frannie is constantly looking at me with a weird sort of sad, worried expression on her furry face. She is stuck to me like velcro at all times and watches my every move. She doesn’t even rudely jump on top of me anymore. She just sort of slinks up on the couch and gingerly slides in next to me. Hmm. Interesting. They say that cancer makes you smell differently to a dog. So, maybe someday when my cancer stink is not as strong she will go back to jumping on me all the time and being ridiculous. Wait? Do I really want that?
My family makes me alert them to the possibility that I may actually want to bathe or go to the bathroom by myself, in case I should fall or something. However, to be fair, I did splat on the floor a time or two before so I really have to give them that one. Ok. Ok. They also don’t want me lifting, pushing or pulling anything….ever! But then they aren’t available when something needs to be lifted pushed or pulled. Ugh! What choice does a girl have? This is why Christmas decorations will be up until 2022. I am sure of it.
Now these same folks that want to treat you like a fragile little thing also don’t seem to mind when you sneakily did something that works to their advantage, like make them a gourmet dinner because you literally had nothing else to do! But, that’s only human I guess. Who doesn’t like good food?
Now, don’t get me wrong. It’s not all bad being let out of certain things. For example, watching everybody load the horses into the trailer themselves and pack everything while I just lounged in the car? Pretty fantastic. Not having to be the one to actually drive everybody everywhere and sometimes I just get to ride along? Also not complainin. If only I could pick and choose tho! It would be great to be able to decide on the spot when I want to be waited on hand and foot versus when I want to tear around like Wonder Woman. Just sayin. I completely get that there are things that I simply cannot do at times. Sometimes I am so weak and tired that I feel like the energy was sucked out of me with a funnel. These are the times that I desperately need help and I thank God for my amazing army. Then, other times I want to grumble and do what I want anyway because I am feeling resentful and frustrated at the limitations. The bottom line is, I just need to learn to be patient with my peeps and with myself. They are all trying to help and they are definitely better at it than I am at helping myself. For now, all I can tell you is that I’ll work on it. Have an amazing day!
What am I talking about? I am talking about gynecological care guidelines. Most recent guidelines from the USPSTF recommend pap smears every three years from ages 21 to 65 if using just the pap smear or every 5 years between 30 and 65 if using the pap smear and HPV testing. These recommendations are based on epidemiological data and costs. The few issues that may be caught before the age of 21 and after the age of 65 are too few and far between to be considered economical to screen for.
I have a problem with this in both the translational sense and the practical sense. With regard to the translational sense, these recommendations have the tendency to confuse adult women based upon terminology. Most women equate getting their pap and their annual check up as one and the same. They are not! In my office, the pap smear is about a 10 second clip of what I do. It is just one small piece of the puzzle. The real meat and bones is in the head to toe exam that I offer which allows me to check for anything that could be wrong in all body parts. You see when you tell most women they don’t need a pap but every three years, if at all, they think sweet! I am off the hook for any gynecologic exams for three years at a time and they don’t come in at all. In the practical sense, this lack of clarification is both irresponsible and potentially deadly. Obgyn is blessed to have some of the best preventative tools in the business but we become crippled by these recommendations because the patients don’t show up. Add to that the fact that insurance companies jump on the bandwagon and start trying to refuse to cover paps/annuals and these women are potentially really screwed. In the practical sense,, the thing is that most gyn conditions do not present with symptoms until the condition is pretty advanced. A little itch on the vulva could actually be a vulvar cancer. A little feeling of fullness in the abdomen could actually be an ovarian tumor. But, unless someone is looking(i.e me), the patient doesn’t know, the condition goes unrecognized and the situation goes from simple and treatable to serious and deadly. In addition, I would challenge the academicians that sit behind the desks and formulate these recommendations to sit down with the patients whose diagnosis you missed and explain to them how it’s ok because the cost/returns ratio was just not in their favor to justify screening. I am not sure that quoting guidelines will help the patient or the family feel any better either.
The bottom line is that I am a fan of the annual exam, whether or not the pap is performed. It is definitely the most bang for your buck way to be watchful for your patients. It really goes back to the OPPOSITE of the old adage: what you don’t know or can’t see CAN hurt you! Have a great day everybody!
It started off innocently enough…..some serious car accidents that I was not supposed to be able to walk away from. So, right off the top, I already know I am a blessed woman. I have not forgotten that. Then, the residual injuries slowly and insidiously crept in and invaded my bones and nerves, but that was to be expected over time. It’s not the kind of thing that you consider very much at the time because you are just lucky to be alive, right? A few aches and pains are nothing compared to losing your spot on Earth. Gotta keep it in perspective.
However, fast forward 20 years and words like stenosis and spurs and compression dominate my latest MRI. Right now as we speak, I am thanking my lucky stars that I did not have any patients today because I am having the granddaddy of all fibro flares. Being able to be at home allows me to take my Motrin, stay in my pajamas, drink a ton of water, and lay back in my ice helmet all day if I need to. I don’t have to show off my unsteady gait because of the inner ear inflammation. I don’t have to struggle just to move my arms and legs while hot pokers of pain are sticking through them as I am faking a smile. I don’t have to worry that my head and neck may blow right off my shoulders at any minute. ( Ok. Just kidding on that one. I know that is not going to happen. It just feels like it is.) I don’t have to be afraid that someone will want to show me affection with a hug that I might stiffen during, afraid to offend them because their display of kindness will only translate to pain for me. I can run to the bathroom as many times as I want with the temporary IBS symptoms that I get. Please do not misunderstand. If I had patients today, I would get myself to the hospital somehow because that is the job that I love and I would just spend the day worrying about who I let down that day anyway..lol. There is no question about it. I am just saying that I can get through this flare a little faster if I am able to concentrate at home. I consider myself lucky at this point. I am not on any chronic pain meds. That is largely because I am ferociously stubborn and the fact that I realize that, with my family history, that would potentially be a move with more risk than benefit. I still go to work. I live my life as fully as I can. I struggle but am mostly successful in maintaining an empowered attitude, which I truly feel impacts the severity of my disease. But, there are some days like this one when I need to just stop a second and breathe.
The thing is, I am not different than millions of people who are suffering from those chronic, invisible diseases every day. There are so many of them: arthritis, chronic fatigue, fibromyalgia, depression and mental illness, diabetes, digestive disorders like IBS or celiac, Lyme disease, migraines, Lupus, and Sjogrens. So, what the heck do I mean by a chronic, invisible disease? An invisible disease is one that does not show obvious external signs or symptoms. They may cause symptoms like dizziness, pain, fatigue, or mental health issues. None of these are things that a person walking by would notice. If they look ok, they must be ok, right? Wrong! Occasionally, we get excited about one of these conditions if they get featured in an article about a celebrity that was affected. But, the vast majority of the time, they go unrecognized and misunderstood by both health care providers and the general public. This really adds to the mental weight of these conditions for the patient and paves the way for feelings of isolation and hopelessness. Did you know that the U.S Department of Health and Human Services estimates that by the end of 2020, 157 million people in the United States will be affected by a chronic illness? In addition to that, the United States Census Bureau estimates that 96% of these chronic illnesses are invisible. That is a huge number! Did you also know that many studies have been done as far back as the 1990s that looked at the lack of validation( belief that the patient was really suffering) as a factor in their disease. The vast majority of patients in the focus groups said that lack of validation was their most significant challenge in managing their condition. It makes sense though, doesn’t it? We all want to be believed. When someone doesn’t believe us, it actually has the power to cause it’s own kind of pain, beside the physical pain we are already experiencing.
There are so many misconceptions about invisible chronic illness. The first one we have already discussed. A person must feel ok if they look ok. We already know that is incorrect. Most patients with these conditions have spent a great deal of time developing coping mechanisms to allow them to enjoy regular daily life. I do it every day. The second one is the conception that the person just needs to rest and they will feel better. I can tell you first hand that all the sleep in the world is not going to break or cure a fibro flare. Sometimes, you can’t even sleep because the pain gets so ridiculous. A third misconception is that all people with chronic invisible illness are really drug seekers. Labelling all of those patients as drug seekers once goes back to the lack of validation of their symptoms that I mentioned earlier. The implication that they are drug seekers indicates that their symptoms cannot be real and they cannot be in any kind of true pain. Wrong again. Another misconception that I hear is that those patients that unable to work because of their pain must “have it made” because they get to stay at home all day and goof off. I actually have heard people say this with an obvious tone of jealousy because they truly think that those homebound patients have a dreamy lifestyle, doing whatever they want all day. Let me paint you a picture: You are trapped at home, in pain, unable to work and support yourself and unable to do the things that you enjoy on a regular basis. Does that actually sound dreamy to you? I think not. Last but not least, I have heard that stress reduction is all that these patients need to get better and that their pain is “all in their head” and they need to “get over it.” Stress is definitely a factor in pain severity, as is emotion. As stress invokes emotion, pain is heightened. Emotion and perception of pain signals are biologically intertwined. However, stress does not CAUSE pain. You can be just sitting somewhere, minding your own business watching butterflies and a flare can envelop you before you know it. That kind of thinking is far too simplistic to explain chronic pain. It really boils down to another type of lack of validation.
The real question to ask is how do you support these patients, not how to cure them. There are no cures as of yet for any of the diseases that I mentioned. There may be treatments, but not cures. Many of these treatments have side effects that need to be weighed against the symptoms of the disease itself. This is important to keep in mind. So, how do you support them? You support them by listening and believing them and throwing away your preconceived biases if possible. Try not to get frustrated because you can’t cure them or that there is no obvious external marker for you to pick up on and follow. Be supportive when they need it and back off when they need space. These patients are challenging to say the least. I always use a multi-disciplinary approach that addresses the physical and the mental aspects of their condition. The team approach has worked the best in my practice. These patients are going to need pain control options, whether it be massage and acupuncture, anti-inflammatorys, Lyrica or narcotics. Their pain is real. Be ready. Most of all, you need to believe them. Sometimes the very key to their path to a reasonable quality of life may just be getting someone to listen. Have a fantastic day everyone!
Ah fibromyalgia! So often maligned as a bullshit, all in your head disease. Patients are placated, symptoms downplayed as just being overemotional or “making yourself sick” or dismissed all together. Seeing is believing when it comes to diseases right? If you can’t see anything on the outside of a person, they must be OK right? Wrong! Did you know that some physicians feel so strongly that fibromyalgia is baloney that they will refuse to see patients that have that on their history list. How do I know? Because I am one of them!
Ok, now that I am semi-finished with that initial rant, let me educate you a bit about fibromyalgia. I feel like it is time, as I am sitting here in full flare, probably brought on by the itty bitty amount of stress around me in the world today…lol
Let’s start out with some diagrams about fibromyalgia and all that it affects
Now let’s talk about fibromyalgia. We are not going to be able to discuss everything in the diagrams above, but we are going to hit some of the key points. The following information regarding fibromyalgia comes from a mix of two sources: my own experience and the Mayo Clinic. I figured that it would probably mean more to pull out a big gun like the mayo to help convince the dubious of this crappy disease’s validity. Well, here goes. Fibromyalgia is a real beast. Did you know that fibromyalgia is one of the most common chronic pain conditions in the world. It affects about 10 million people in the United States alone, according to the National Fibromyalgia Association. It is a disorder that is characterized by widespread musculoskeletal pain and fatigue. It does not cause joint damage per say, but the musculoskeletal pain is still quite severe. It also affects sleep, memory and mood. YAY! There is research that suggests that fibromyalgia amplifies painful sensations by affecting the way the brain processes pain signals. Huh? What? For example, a typical person might find light stroking on their arm(“arm tickles”) pleasurable on any given day. For a person with fibromyalgia on a flare day, they might perceive those light arm tickles as a person literally digging into their arm with hot pokers, which is about the furthest from a pleasurable sensation that you can get. This can definitely get in the way of a good episode of hugging or snuggling.
So, why does it hurt? We think that this abnormal processing of pain signals in fibromyalgia patients is due to abnormal levels of the neurotransmitters in the brain, spinal cord, and nerves. We have seen that repeated nerve stimulation in fibromyalgia patients actually causes changes in the brain and abnormally increases these neurotransmitters. On top of that, the pain receptors in the brains of fibromyalgia patients then go on to develop a type of pain memory and become even more sensitive. This results in the receptor “overreacting” to any pain signals.
We really do not know for sure what causes fibromyalgia. It is said that fibromyalgia symptoms can begin after a physical trauma, surgery, infection or significant psychological stress. However, there are other patients with fibromyalgia that gradually develop symptoms over time with no triggering event. Family history also seems to play a role in fibromyalgia. A patient is more likely to develop fibromyalgia if they have a relative who has it. I have seen this myself over the years. In my particular case, I can check off several of those boxes. I am blessed to have survived some horrendous car accidents. I have experienced lifetime movie-worthy psychological stress, in addition to multiple surgeries and I have family members who suffer from fibromyalgia.
The part about the correlation to psychological stress is what really gives fibromyalgia a bad name and it’s victims a lot of discrimination. This fact just makes it easier for people to label those patients as psychosomatic or treat them as if their pain is not real. Trust me the pain is real! The flares are real! I am very fortunate that I do not get flares that often, but when I do, I experience a multitude of symptoms including diffuse hot pain, especially in my neck, back and shoulders. All my sensations are off. I could scratch an itch on my arm and swear I just accidentally burned myself with a hot drill. My head hurts. I feel feverish. I am exhausted. Sometimes I even feel dizzy. My TMJ acts up. I get temporary irritable bowel symptoms. It just really adds up to a super fun day. I will admit that there is a correlation between stress, emotions, and symptoms. The symptoms are definitely worse when I am stressed, but then sometimes I have symptoms even when there is no stress and then I become stressed out because I feel so shitty. It can really be a vicious cycle. I am not sure that anyone can truly understand what a person with fibromyalgia goes through unless they have actually experienced it. We tend to judge people and their disease severity by outward appearances. It’s like we can’t believe something is real until we can “see it with our own eyes.” Well folks, there is nothing to see here and I guarantee you it is very real!
Let’s break down these symptoms a bit more: widespread pain, fatigue, and cognitive difficulties. Fibromyalgia pain is often described as constant dull aching that has lasted at least intermittently for at least three months. It has to occur on both sides of your body and above and below your waist to be considered widespread. As far as fatigue, fibromyalgia patients often wake up exhausted, no matter how long they have slept. Their sleep is often interrupted by pain and other sleep disorders like restless leg syndrome and sleep apnea, just to add to the fun. “Fibro fog” is a term that is used to describe the cognitive troubles like impaired ability to focus, pay attention and concentrate. I get it, fibro fog sounds made up, but it is very real as well. There are times when my level of discomfort really does get in the way of finishing a thought at that moment.
Fibromyalgia likes to hang out with a multitude of other painful diseases like migraines, irritable bowel syndrome, migraines and other headaches, interstitial cystitis( painful bladder syndrome) and TMJ. It’s almost as if all the fibromyalgia components aren’t enough by themselves. It’s like a domino effect with other body systems falling in line with altered pain perception with emotional component. The patients that have more than one of these pain syndromes truly have the capacity to suffer without some compassionate help.
Did you know that women are more likely to develop fibromyalgia than men? According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, women are eight to nine times more likely than men to have fibromyalgia. It has been suggested that women could be more at risk for fibromyalgia in part due to the role that hormones play in the perception of pain. Fluctuating estrogen and progesterone levels during the menstrual cycle seem to correlate with severity of fibromyalgia symptoms in some women. This fact of course leads to more discrimination as women are often thought of as the more emotional sex to begin with. This is consistent with the misguided thinking that fibromyalgia ORIGINATES from emotions and emotional triggers rather than the more accurate fibromyalgia is AFFECTED by or ACCELERATED by emotional triggers. There is a difference.
How is fibromyalgia diagnosed? Back in the good old days, doctors would put a patient through an 18 point pain exam. This exam consisted of a physician pressing firmly on 18 different points on a person’s body to see if any of them were painful. Nowadays we do not put patients through the tender point exam. Now doctors diagnose fibromyalgia based on the patient’s symptoms and if a person has had widespread pain( both sides of the body and above and below the waist) for more than three months with no underlying medical condition that also causes pain. There are no specific blood tests or x rays to diagnose fibromyalgia. But, doctors will probably draw a complete bood count, sed rate, ccp, rheumatoid factor and thyroid function tests to rule out other underlying disease.
So, how do we treat it? Is there any hope? The best option for fibromyalgia treatment is a combination of medication and self care. I am a fan of the multidisclipinary approach, emphasizing good physical and mental heath, along with management of pain to increase quality of life. As far as medications, the U.S Food and Drug Administration has approved three drugs for the treatment of fibromyalgia. Two of these drugs alter serotinin and norepinephrine levels to help control pain: Cymbalta and Savella. There are some older drugs that affect these same neurotransmitters as well like Elavil and Flexeril that can also be helpful. The third drug approved to treat fibromyalgia is Lyrica. Lyrica works by blocking the overactivity of nerve cells that are involved in the transmission of pain. Neurontin works in a similar way and is also sometimes used. Over the counter pain relievers like Tylenol, Motrin, and Alleve can also be helpful. Narcotics and opioids are not a good idea for fibromyalgia because they can lead to dependence and even worsen pain over time a a result. In addition, the side effect of sleepiness would only accentuate the baseline fatigue that fibromyalgia patients already suffer with.
There are non drug therapies as well. Physical exercise is the most effective treatment for fibromyalgia and should be used in addition to any drug therapy. Patients benefit the most from regular aerobic exercise or other body-based therapies like Tai Chi and yoga. Let me be clear, I am not saying anything about it being EASY to exercise with fibromyalgia. More often than not, I am usually cursing like a sailor when I first get started, especially if I am having a bad day and am hurting. The good news is that, even if a patient is in pain, low impact physical exercise will not cause any harm. I have to admit that, even if I am hurting at first, I usually feel better when I am done and I definitely feel better day to day if I keep up an exercise regimen. Physical therapy is also a good option because the therapist can individualize exercises for strength, flexibility and stamina. Water based exercises are very helpful as well. My motto is it’s ok to keep cursing, as long as you keep moving.
Acupuncture has also been suggested as an option for Fibromyalgia. Acupuncture involves the insertion of very thin needles through your skin at particular points on your body. It has been a key component of Chinese medicine for thousands of years. The Chinese use it to balance the flow of energy or life force (chi) that flows through the meridians( pathways) in your body. They believe that inserting these needles will re-balance the energy flow. In Western medicine, the acupuncture points are viewed as places to stimulate nerves, muscles and connective tissue. By stimulating these points, your body’s natural painkillers are stimulated like substance P, endorphins, and met-enkephalin. This stimulation of natural painkillers can possibly help with fibromyalgia pain.
The S.H.I.N.E protocol has also been suggested as a holistic approach to treating fibromyalgia and chronic fatigue syndrome. S stands for sleep. Get adequate sleep to replenish your energy and muscle repair. H stands for hormones. Correct any underlying hormone imbalances such as estrogen, progesterone, testosterone, or thyroid hormones. I stands for immunity and infections. Looks for underlying viral, bacterial, bowel, sinus or yeast infections and treat them. N stands for nutrition. Make sure that your vitamins and minerals are in optimal balance. E stands for exercise as able. Don’t overdo it and cause undue fatigue. Gradually increase exercise as tolerable.
It is very important to keep yourself mentally healthy with fibromyalgia. All that pain can really drag you down. Patients with fibromyalgia have a high percentage of anxiety and depression. Some of them had anxiety and depression before developing fibromyalgia. Some develop anxiety and depression after fibromyalgia. I think that chicken or the egg question can never be answered with certainty. I always recommend regular counselling to my fibromyalgia patients and I use it myself as well. A counsellor can be a fabulous resource for stress management strategies which can help lessen flares. In addition, a counsellor can help get at the root of any psychological trauma the patient may not have processed yet.
Last, but not least, I think it is important with fibromyalgia to take an active hand in developing your own strategy for how to deal with flares, keep moving and increase your own quality of life. I have noticed over the years that the biggest predictor of quality of life in my fibromyalgia patients is whether the patient is actively seeking ways to feel better and be captain of their own ship or if they have given up, resigned to be a victim forever. I have some patients who are in a wheel chair and on disability and I have some patients, like myself, who are active with jobs and living their lives. I really do believe that there is a mental game that must be played and won with fibromyalgia in order to not let it rule your life. I know that for myself, I have to get up every day and will myself to keep plugging and keep going, even if I don’t feel like it. I am not successful every time. There are some days when I am having a flare that is so ridiculous that I have to stay home, drink tons of water and wear an ice helmet around my head and neck. I have to force myself to go for a walk or workout because I don’t always feel like it and it hurts when I do it sometimes, but I know it is essential to keeping me moving I have to come up with ways to manage pain that still allow me to function during the day. My favorite pain management so far is to use some daily turmeric as a supplement, do some kind of workout every day, use Motrin when I have to, and drink tons of water to help me clear whatever inflammatory lactic acid that I have built up in my muscles. Massage is great too, when I can get to an appointment. I try to manage stress the best that I can, but I would be lying to say that I am perfect at it. Stress is unavoidable in my line of work…and life..lol The point is, that I have developed some strategies that are working for me..most of the time. Everybody is different. This disease sucks, but it is not life-threatening. We need to own it and work hard to find whatever strategy works for us. You are not going to cure it, but you need to find a way to live with it. That’s all for now.
So, this one Saturday pre chemo I woke up feeling like a champ! I had slept a full ten hours…..without interruption! Holy Crap! I didn’t even feel like I had cancer! I had energy! I wanted to go kick some ass somewhere! I did a little dance. I told everybody in the house that I was ready to go. I sat down to breakfast 35 minutes later, smiling ear to ear. And then, without warning, it all started melting away. I felt the slow spread of heat and fatigue wash over me. I started getting short of breath and achy. I couldn’t speak in full sentences without taking a breath. Within a few minutes, my cancer symptoms had swept back in, enveloping me in that blanket of sick that I had just swore I had shucked off for the day. Here I was again, the lymphoma patient, set up for yet another day on the couch. Awe man! One of the hardest parts too is watching my husband’s temporarily hopeful facial expression slowly fade into a sad little empathetic smile that I have come to know so frequently. This is, my friends, just the way it is. There is a level of unpredictability about this whole thing that is never easy to reconcile, much less accept. Welp, I guess it’s time to dig out the remote again and settle in for some more Netflix. It is what it is. That’s fine. I’ll rest for now, plotting what amazing things I could do in that next 35 minutes! This is just one of the smaller battles Cancer. You can have this one. I’m saving myself for the real one. Cue mic drop.
Man this cancer thing is already kind of ridiculous, and I haven’t even started treatment. From the moment I found out, I firmly positioned myself in full bad-ass stance, made long term grandiose plans and capriciously swore that nothing would hold me down or stop me from caring for other people and patients. I was cocky. I was confident. I thought that it would help me beat this thing.
So, that was like….so last two weeks. Now let me tell you about what I actually should have done or learned…lol When I first learned that I had cancer, I had people telling me everything from reminding me how I need to slow down to I could work full time with this no problem with no pauses! Well of course I gravitated toward the full throttle advice! Who wouldn’t? I didn’t cancel patients right away. I started writing my book. I started a new podcast. I recruited my army, once I finally let the cat out of the bag. I cried for about two seconds and then I was ready to go! I was not done yet! Screw you cancer! You’re not the boss of me! Sound familiar? Anyone else been there? It doesn’t last too long does it?
Here is what I should have realized and learned. The first thing to realize when you are told you have cancer is that it has been around a lot longer than you thought. You need to add a couple of years in some cases to the time of diagnosis. Whaaat?! A couple of years?! That sucker has been sneaking around in my body for a couple of years? What the hell?! What that means is by the time you are diagnosed, it has been around long enough to give you symptoms. This means that the path from feeling normal to shitty has been significantly shortened before you even get the chance to process the fact that you have cancer in the first place. How rude!
Second, I should have realized that now is the time to plan carefully, anticipate and CONSERVE energy, not burn it all up before you even start. This is the time to try to be realistic, without guilt, about what you will be able to do and not do. This is my biggest challenge. Instead of just relaxing, I spend way too much time feeling guilty on what I am missing out on and who I am letting down. I am fixated on the fact that I am dropping the ball. Ugh! I went from feeling good to crappy in about a week. Now I walk across the room or just sit and promptly get short of breath, depending on the day. I have fatigue that is so intense that it literally comes out of no where and sucks the life out of you to the point that even breathing seems like too much effort. I am told that this is common with lymphoma since it is a condition that has a lot more inflammation associated with it. Therefore, your body requires a ton of excess energy and calories to try to fight it off. It makes sense I guess. My point is, that I waste time when I feel good trying to accomplish a million things until the next time I don’t feel good. I am not good at resting. How will this benefit me? It won’t. It will only make it tougher and take me longer to get better.
Last but not least, I should have realized that I have to let people help me! They are doing it because they want to, not because I am making them. I need to stop trying to do everything myself. I need to stop confusing accepting help with some weird acknowledgement of failure or weakness. What is my problem? I still don’t know…lol All I can promise is that I will work on it, because I intend to see this thing all the way through. Wish me luck!
Today’s the day. Today I go for excisional biopsy of the lymph nodes around my neck so they can study it and determine if I have ” the good kind” of lymphoma, Hodgkins, or the aggressive kind, diffuse large B Cell Non-Hodgkins. Good kind? Bad kind? I am just not sure what to root for here. Isn’t all cancer “the bad kind?” My doctor also told me with a smile that he has never lost a patient with Hodgkins. Awesome! But wait! What about Non-Hodgkins patients? He meant to be reassuring. Instead of taking that as good news, I immediately panicked that he had somehow over bragged to the universe and karmic retribution had to be on it’s way.
Sorry, I couldn’t help a bit of sarcasm there. I know what the doctors mean. One kind has really high cure rates and one not so high and tougher to get through. Yes. Of course I understand. However, it is tough for a patient to embrace the clinical perspective right after hearing a diagnosis. Sometimes they just need a minute to try to start processing before they are able to realize whether they are actually “luckier ” than they thought or not. The moment you hear the words “we think you have cancer”, everything kind of stops. No other words have a chance to register. That dirty C word just hammers in your ears like an obnoxious bell and your mind starts racing. You need to just let it sit a minute before you start comparing stats and trying to tell them how to think about it. I know this first hand. I do it too as a doctor. I am always trying to temper my need to tell a patient that it’s not so bad and flood them with good statistics to reassure them with their need to just sit a second and take in what I said first.
Bad news is never easy to deliver, even when a patient is expecting it. I don’t really think that there is one best way to do it. I tend to vary my presentation depending on my knowledge of the patient and what I think they can handle. I was expecting this news, based on everything that I knew, but I still wasn’t instantly ready to prioritize and tier the possible types of cancer and how one was better than the other. I just needed to take in the fact that I could have cancer. That was as far as my mind could go at the moment. For me as a physician, if I know that I have to deliver bad news, I deliver the news and then I am quiet for a minute. I deliberately try to let the patient be the first one to start the next part of the conversation. I have just told them something that may soon launch them into a life-changing scenario in which they have little control. I figure that the least thing I can do is let them have control over how the conversation goes in the next few minutes. If I let them speak first before bombarding them with statistics or trying to mold how they should perceive the news, I can more clearly gauge how to tell them more and what to tell them. I think that it is really important to let them at least take control of this initial conversation. It may be the only decision that they get to concretely make for awhile. Sometimes I can’t reassure them right away. Sometimes they just aren’t ready. They are scared, angry, and confused. Sometimes you have to let them be for a minute.
I think it is tougher for my doctors to let me be for a minute. They know that I am a physician too and they figure that I can handle all the stats and details. They care almost too much because they know me. They know that I can understand the information. They know that I am interested in being my own advocate. I get all that, but sometimes it is a little too much. This time, I am the patient. I am not in charge, although I am trying to act like I am. I am putting on a brave, calm, collected face. Sometimes I think I am doing that more for others than for myself. I don’t feel very calm and collected when I am sitting in my bathtub, overreading about lymphoma and trying to give myself an anxiety attack…lol. I want to be Wonder Woman, but right now, I am just me, Laura Katz, the patient. I am waiting for news just like everybody else. I am waiting to see how my life is going to change. That will have to be good enough.
How does that Tim McGraw song go? The guy found out he was dying and decided to love deeper and speak sweeter? Now that there was hardly any time left? That song makes me cry every time I hear it, not just because the guy is dying, but because of all the time he obviously wasted when he could have been savoring life, everything and everyone around him.
Let me tell you first hand that I am being worked up for lymphoma right now. One possible type is very treatable and the other is far more aggressive and tricky. Either way, I am in for a fight and, like with any possible cancer diagnosis, there is a possibility that I won’t make it. It’s just the reality of the situation. However, I know one thing for sure: I have tried to live my life to the fullest and love the deepest since the day I was born. I have always tried to put myself out there. I have tried new things. I have been kind. I have always let my family know that they are my true love and my whole heart. Do I have some regrets? Sure. Everybody does. Are there some things that I would have done differently? Of course. I have had a shit ton of tragedy and obstacles too and I have learned from all of it. But, no matter what, I know that I have had a life well-lived so far and that I am going to continue to head in that direction. I am so grateful for that. I can’t imagine feeling like I have to cram an entire life’s worth of experiences and savoring into a couple of months because I wasted it all before that point. It’s an impossible task. My advice is take it all in now! Savor everything now! Send love out to the universe now! Don’t kid yourself and hold back thinking that you’ll always have plenty of time. Tomorrow is never guaranteed for any of us.
Welp, it is finally my turn. I just got diagnosed with cancer and suddenly I am in the same boat as thousands of other women that I have helped over the years. What the hell? How did this happen? What did I do wrong? I started off feeling weirdly vindicated and relieved, since I knew something was off for awhile and just couldn’t put my finger on it. I am sure that sounds strange to say out loud but I am sure that some of you know what I mean. You know your own body. You know when something is wrong. Sometimes you just feel it. Or, in my case, sometimes you know too much and overthink it and then chastise yourself that you are being a hypochondriac and dismiss it. It’s like what every medical student and resident goes through. As soon as you learn about a new disease, you swear that you have it if you even have one of the symptoms. It gets kind of ridiculous if I am being honest.
Anyway, moving on…..now I actually have the diagnosis of cancer. It is not in my head. I can no longer brush off symptoms. It’s real. It’s time to buck up and embrace it and kick it’s ass! I have quite the road ahead with chemo, radiation and who knows what else. I have an impending “hair do over” to look forward to. But you know, maybe it will actually come back thicker and nicer? It could happen. Fingers crossed.
I have a lot to do in the coming months. When I hear people say that my first thoughts go to my family, my employees and my patients. Ever the overachiever, my plan is to care for all of them, while kicking cancer’s ass and just zoom along like nothing ever happened. But, as the last few days and extra hospital admits have shown me, I have it all wrong just a bit. I actually need to back up and reprioritize a little. By that I mean, I need to be better about looking after myself. I need to recognize the fact that “gasp” I may have a few limitations coming up. What?! Not me! I need to realize that I can no longer travel at the speed of light 24 hours a day. Sometimes I have to stop. Sometimes I will have to work from home or not at all. The last thing I need to do is set myself up for failure. That won’t help me or anyone else. I also have to learn how to say no. Dear God that is not an easy one.
Now, don’t misunderstand. I am not about to stop being me. As we speak, I am sitting at home working on this blog and mapping out my sixth chapter in my book about lymphoma and I have plans to donate any proceeds to lymphoma research when this is all done. I do not intend to shrivel up in a corner and disappear or anything. I just have to listen to my body and slow down when I need to.
So, the bottom line is that I plan on beating this thing……and helping patients along the way. I have been a patient more times than I care to think about in my short 51 years and each time I have been able to use my first hand experience to help patients and others. I will slow down when I need to. I will follow my own advice and the advice of my doctors but cancer, you better stand up and take notice! It’s your turn to be afraid! I am gonna turn the tables on you and use you to actually help even more people! Hah! Whaddya think of that?
These are words to live by right there. I am always encouraging patients to advocate for themselves. I think that every patient should be master and commander of their own destiny. It is so important that you listen with your eyes and ears open at every doctor’s appointment. Take notes and read everything that your doctors give you. At least attempt to understand what your doctor is telling you or ask questions until you do. Insist on clarification if you don’t. Pay attention, even if you don’t like what the doctor is saying, especially if you are getting news that you don’t want to hear. If you are getting any kind of unfavorable news, it becomes even more important to buckle down and concentrate so that you can be a part of your own management plan. If you disagree with your doctor’s diagnosis and plan, communicate that, in the right way, and talk about it together. Make sure that you have given him or her ALL the necessary information that you can think of, even if you think it doesn’t matter. Ask questions! I never understand when my colleagues complain about patients asking questions. I am like bring it on! I love questions! It means that you are actually interested in your own health and what I am telling you. I am actually more concerned if you don’t ask. Plus, if I have a problem with a patient asking questions, that poorly reflects on me if anything. So, please ask away.
So we have discussed how to advocate for yourself as a patient. Now let’s discuss the difference between advocating for yourself and trying to be your own doctor. When a patient advocates for themselves, they are being an active participant in their own management. They are agreeing to a team participation relationship between themselves and their physician. They are vested in their care. This is a good thing. Sometimes, patients cross the line and try to be their own doctor. This is when things get tricky and potentially harmful. Show of hands: who has done this before? I think we all have at one time or another, myself included. There are many different strategies that we use. 1) We self- diagnose with the aid of our friends or Doctor Google and seek our own treatment. 2) Sometimes we use left-over medication instead of seeking help or advice. 3) Sometimes we are so set on our own self-diagnosis that we call the doctor’s office and insist on a particular course of treatment and refuse to come in because we are sure that we are right. Then we lash out at the doctor for not instantly responding to our requests of convenience and daring to ask us to come for an appointment. 4) Sometimes we convince ourselves that nothing’s wrong and delay our treatment because we are either afraid or “don’t have time to bother with it.” I think that physicians in particular are guilty of this last one. We spend so much time caring for others that we don’t make the time to make sure we care for ourselves. It really is self-defeating because, if we don’t take care of ourselves and assume a patient role at times, we won’t be around to care for others.
All of these strategies have the potential to bite you in the proverbial ass at the end. I strongly advise against it. Mind you, I am all about patients being aware of their own bodies and health history. On top of that, I am always listening when a patient gives me their diagnosis and I take it into consideration. However, the bottom line is, when you are too close to a situation(i.e you trying to diagnose you), it is nearly impossible to always make the right decision. The chances of you being wrong are greater than the chances of you being right. You just can’t be objective. The decisions we make for ourselves are automatically imbued with our own agenda and baggage: We are worried about missing work. We don’t have time to go to the doctor. We don’t have time to stop. There are deadlines that we are worried about missing. We are afraid. When you “let your doctor in” on the decision making process, you bring back the objectivity that is crucial in determining the right diagnosis and treatment. When a patient comes to me with an issue, I am able to evaluate it with a clear head with objective information. My initial job is to get to the root of their issue and come up with a plan. I have the luxury of not having to be preloaded with concerns about their external factors until I have come up with a diagnosis. Let me clarify. I do not mean that I don’t consider their schedules or other life issues, I just mean that I don’t have to let it slow me down in terms of their diagnosis.
Now that we have described what it means to be your own doctor, let’s talk about why it is a bad idea. First and foremost, you just get it your own way. You slow down the path to diagnosis and treatment, if not cure. Second, if you are wrong, and there is a good chance that you could be, it could literally mean the difference between success and failure, life and death, etc. Third, you are not giving your doctor a chance to actually do their job. They did go to medical school after all and it was probably a more thorough training experience that what Dr. Google or your friend has. Let them get their ( and your) money’s worth out of it! Fourth, trying to be your own doctor can be really isolating and frustrating and often you have gone through multiple incomplete treatment options first when you could have just gone to the doctor and gotten the correct treatment the first time. If the risk of wasting time was your deciding factor in not going to the doctor, you just negated it by wasting your own time. Just don’t do it!
I fully realize that doctors need to step it up and not force this situation either. We are not free of accountability here. We need to try to work with your schedule. It’s not always possible though. We need to have same day appointment availability slots if possible. We need to make sure our staff is answering phones regularly when you call with questions when we are busy with patients. We need to make sure that we answer our phones when you have after hours concerns. I get that. It’s not just a one-sided issue. I make every effort to fulfill all of these criteria. But, none of these convenience and safety steps can make any difference unless you at least try to reach out in the first place.
My sense of time seems really off lately. And by lately, I mean the whole last 7 months or so. I have found myself having difficulty reconciling the fact that I have the appearance of more time, without actually being able to accomplish more. I keep thinking that I know that I have more time on my hands because I can’t run off and do half the things that I used to. My weekends are no longer taken up by sporting events, concerts, dinner outings, or much of anything really. That means I should be able to get all kinds of leftover crap done, doesn’t it. Yet, I find days going by lately when I feel like I didn’t really accomplish anything. How is that possible? Granted, I probably set myself up for failure with my overachieving list of goals to accomplish that significantly outpaces the number of available hours. I have to own that part. But, usually I can get at least some of it done. I spent a long time pondering this little puzzle with no helpful insights until now. I finally figured out where my thought process was going astray.
I was thinking negatively in terms of my lack of physical accomplishments and looking for concrete physical barricades to my goals. I hadn’t stopped to consider the mental barriers to productivity that we all have been suffering from lately. It really hasn’t been about the lack of time. In truth, with the lack of activities available, I have had more physical time to accomplish more things: I just haven’t wanted to and it is ok to admit it out loud. With all of the stress around me lately, I just plain old have run out of mental energy to stay productive all the time. I have run out of things that I want to clean. I have run out of ways that I want to use to fill my time. I have subconsciously made myself a pact to take a step back, relax and sometimes just be. To my surprise, I realized that this was not necessarily a bad thing! This is just me practicing self-care without realizing it. I am trying to conserve what’s left of my mental energy for when I really need it, not when I am just trying to keep constantly busy. I am trying to rejuvenate and refresh. This is ok! I have to give myself permission for this and I would suggest that you do the same. Stop finding new things to beat yourself up for. A million things do not need to be accomplished every single day. Sometimes there needs to be a day to just breathe. Pummelling ourselves with endless, impossible to finish tasks will not reset or fix the out of control tension going on in the world today. Overscheduling ourselves just to say that we are doing something is actually doing more harm than good. I think we need to relearn how to just sit every now and then. It’s only when we stop moving for a second that we can actually appreciate what we have.
I just want to start off by saying WHOAH people! What is happening to everybody? Where did logic go? Where did common sense and understanding go? In just the past 24 hours I have seen people finger pointing, yelling at each other, shouting about conspiracy theories, threatening others, protesting, and panicking. That is a ton of unfriendly verbs right there. There is nothing good that is going to come from any of it. What’s simmering underneath all of it? : the pandemic and the politics swirling swirling around it. Let me take a minute and give you my honest perspective on it. Let me also be clear that what I am going to say is based on facts and personal observations. I am not here to sway you, convince you or otherwise change your direction. I just want to give you something to consider. If it happens to help you press pause on panic and anger, fantastic! If it doesn’t, it needs to be said anyway.
Ok here goes. I am here to tell you that Covid 19 is a real virus in the Corona virus family, which is the same family of viruses that cause the common cold. As you know, there is an infinite variety of viral mutations that can cause a cold and thus, we will probably never have a vaccine for it. Some of us will go down like a wildabeast for weeks with congestion, trouble breathing, coughing and even fevers. Some of us will get a little runny nose for a few days to a week and that’s the end of it. A small group of high risk people may even die from it. Now here comes Covid 19, a corona virus. It can mutate like other Corona viruses. It is ridiculously contagious like a cold. The vast majority of people that get it will have bad cold symptoms. Some people will be completely symptom free. A small subset will get seriously ill and may even die. This is crazy scary right? Of course it is. That’s a natural response. But, let’s put it in perspective. There is a certain subset of unfortunate people that are more at risk for everything due to comorbid conditions. These are the folks that need to always be careful, whether there is a pandemic going on or not. When you do the actual math on the covid thing, with verifiable numbers, the death rate is extremely small. I get it, even one death is too many. Of course it is. I am just saying that it is my opinion that our reaction and response to Covid perhaps should be in better proportion to the actual statistical risk it poses. We deal with many infectious and terrible things that can kill people every single year and they have not instigated a world mess of this proportion. I seem to recall complaining about the “latest shitty upper respiratory illness” as it blows through the world every year. In my lifetime alone we have had AIDS, H1N1, SARS, ebola, and the year round outbreaks of flu. I have news for you. AIDS and the flu have not miraculously disappeared, just because we are not talking about them. They are not the cool kids anymore, but I can remember being inundated with all kinds of bits of information each time one of these outbreaks started and feeling momentarily overwhelmed, but then we all went on. We didn’t shut down the economy and add financial despair to the shoulder weight of an already distressed country. We didn’t wipe out all other news and saturate all of our overwhelmed receptors relentlessly for months.
Let me be clear. I know this virus is real. I work in three different hospital systems. I have seen everything from the icu patients to the asymptomatic patients and everyone in between. Half of my family has had it….all have survived thank goodness but other people I know haven’t. One of my favorite people in the world died of Covid. But guess what, every time I have found myself scratching my head on why someone died, I realized after investigation that they actually had a comorbid condition that adversely affected their Covid path. It just makes sense. These cases we hear about in which someone died unexpectedly, I am willing to bet that the vast majority of the time there was an underlying condition as well. Just because we don’t hear about it or the person didn’t know, doesn’t make it not true. I think in the case of Covid, it’s all the things we don’t know or feel sure of that get to us the most. We hope a vaccine is coming, but it won’t be universally available for awhile yet. When it is, I am sure that some people will refuse it like they refuse everything else, even though we have all been clamoring for one for months. How does that make sense? It’s like we want to be able to control a decision about something, anything, just to say that we did whether it is good for us or not since we all feel so out of control.
So what am I really saying is that I think the whole pandemic has provided us with a view into how quickly everything can go wrong with misleading information. It has showed us how forced panic is not the way to go to convince people to follow guidelines. It has showed us that leaving people to their own devices without clear communication leads to nothing but chaos. It has showed us that when we come at people from all sides with negative and oppressive tactics, we don’t even allow them the opportunity to make good decisions. We have got to get it together and do things and think things based on actual facts and reintroduce common sense into this global scenario. Otherwise, we are just not going to make it through this.
Hey everybody. Show of hands…who seems to be tired all the time lately? I bet there is a ton of you. No matter how much sleep you get, no matter how well you eat, no matter how much caffeine you drink, that thick blanket of fatigue just never leaves lately. But why? My guess is that this persistent exhaustion isn’t actually just physical, it’s emotional as well. I mean sure, I am one of the believers that constant mask wearing puts you at risk for CO2 retention and respiratory acidosis, which can cause fatigue, but I know that is not the whole story.
So, why are we so exhausted? There are ten basic causes for fatigue that are the most common. Some of them we do to ourselves and some of them we have no control over. Let’s review.
The first one is poor diet. If you eat a diet full of refined sugars and carbs, you will be totally wiped out because all you get from that is short energy bursts followed by crashes. Likewise, if you are trying to diet and you are not actually getting enough calories to keep your body going, you will simultaneously just drain your own energy reserves throughout the day. On the other hand, if you eat a well balanced diet with no meal skipping, you will stay fueled the whole day!
The second one is using electronics before bed. I am totally guilty of this one. I mean, who is not filling their heads with the latest anxiety-causing social media right before they want to go to sleep? Sometimes it is the only time that we feel like we can “catch up” on the world right? Did you know that using electronics before bed turns up your fight or flight response which increases your pulse and blood pressure for several hours? It also decreases your melatonin levels. Both of those things are sure to keep you up longer. Ideally, you should aim to “unplug” at least three hours before bed time to give yourself a fighting chance.
The third one is sleep apnea. Sleep apnea happens when you literally stop breathing multiple times during the night, even if you don’t know that you’re doing it. This happens because your airways close while you are sleeping because of extra soft tissue. Not sure if this applies to you? Ask your bed buddy, if you have one, if you are keeping them up at night with your intense snoring. If the answer is yes, talk to your doctor about it and get treated.
The fourth one is anemia. If you are anemic with low hemoglobin, your red blood cell count is low and they are not getting enough oxygen and therefore you are tired all the time. The most common cause of anemia for women would be iron deficiency from menstrual blood loss. Some symptoms of anemia might be skin pallor, elevated pulse, fatigue or weakness. If you think you are anemic, talk to your doctor before self treating.
The fifth one is diabetes that is undiagnosed or poorly controlled. Diabetes causes excess sugars to stay in the bloodstream instead of going into the muscle where they can be used for fuel. As a result, you stay fatigued all the time. Some symptoms of diabetes could be frequent urination, excess hunger, excess thirst, and fatigue. If you think you might have diabetes talk to your doctor.
The sixth one is dehydration. We are all racing around lately without stopping just to try and keep up with the world around us. One sign of dehydration could be darkening of your urine when you go to the bathroom. If you notice, start increasing your fluids and see if it changes. We need to take the time to drink water frequently throughout the day. Experts say that we should aim for at least 3.7 liters(15.5 cups) a day for men and 2.7 liters( 11.5 cups) per day for women. How many of us are even close to that? I better get drinkin!
The seventh one is too much caffeine intake. I think that the world in general is guilty of this nowadays. There is no dietary recommendation for caffeine. It can be found in some medications, chocolate, caffeinated teas and sodas, and energy drinks. While caffeine can give you a temporary boost, it doesn’t last. How much caffeine is too much depends on the person. The effects of too much caffeine include increased blood pressure, elevated heart rate, premature heart contractions, and headaches. With caffeine, it really is a vicious cycle. You start drinking caffeine because you are tired. The caffeine then makes your body race and you get more fatigued. Then you find yourself “needing” more caffeine. Then when you try to wean yourself off of caffeine, you can get ridiculous headaches as it washes out of your system. In an ideal world, I would say don’t even try it in the first place. Mind you, I am saying this as I am sipping my dollar sized McDonald’s coffee.
The eight one is a chronic infection of some kind, most commonly a bladder infection. If you have been recently treated for a bladder infection and have no other symptoms except a lingering fatigue, go back to your doctor and get rechecked. You could have some infection left over.
The ninth one is thyroid issues. The thyroid is that little gland in your neck that literally has it’s fingers in multiple body functions, not the least of which, your metabolism. If your thyroid is underactive(hypothyroid), that could slow your metabolism and make you feel really sluggish. It could also affect your skin and make it difficult for you to lose weight. If your thyroid is really underactive, you might even notice a bulge in your neck and have trouble swallowing. If you think you have thyroid issues, call your doctor and get checked.
Last, but definitely not least, depression and stress are a major cause of fatigue. At least 25% of people suffering from depression report fatigue and a loss of appetite, in addition to the classic depressed mood that we think of. This is the one that I think is really affecting all of us right now with the the state of the world like it is. Depression causes feelings of sadness, anxiety or hopelessness for an extended period of time. People who are depressed often have sleep problems, which only add to the fatigue. Stress stimulates our flight or fight response which overtaxes our metabolism and can leave us feeling worn out and tired. Who doesn’t feel all of those things right now? The world is just not the same. We feel out of control. We feel like the joy has been sapped out of all our favorite things. We are spending a lot of energy looking for someone to blame for how things are instead of using our energy to deal with it. In my practice alone, the percentage of patients that I am helping with depression has risen 75%. This is a real problem and we need help.
So, we have talked about the causes. For the first nine, the strategy is fairly obvious: treat the underlying condition and the symptoms should resolve. Correct the lifestyle slip ups and the symptoms should get better. The last one, depression and stress, is a much harder mountain to climb. There is no one strategy that works for everyone because it is not a straightforward issue. You know what my first suggestion is going to be: talk to your doctor! Clue them in to what is going on with you and maybe they can help. Talk to your family and your friends. Maybe they are feeling the same way! Support each other the best we can! Seek counselling and therapy. I know that I personally have a list of counsellors ready to help at my office at any one time. Don’t try to tackle it all on your own! There is no harm, no foul, and no defeat in seeking help. The real battle is lost when you don’t take advantage of the resources around you and something terrible happens. Then the consequences spread like ripples on a pond, not only affecting you, but everyone you care about as well. Make sure you take the time to realize your own importance, especially now. No one can do that for you. I will make you a promise right now, we doctors are here for you.. We understand and we are tired too, but we will always be here.