As you may or may not know, I have taken on a lot of stuff lately. In the last few years, I beat cancer, nursed my husband back to health after his heart attack, worked without pay, wrote some books ( buy some will ya?), became my own office manager, became my husband’s office manager, fired staff, hired staff, completely switched billing companies, expanded social media, started a lecture series, started a chemo support group…..whew. I think the list keeps going even after that. It’s a lot. I get it. Most people who foolishly ask me how’s it goin, may or may not want to actually know, but I tell them anyway! Then they get a little stunned. They wonder how I am not an overwhelmed hot mess. I tell them no, I’m actually not. I am enjoying it. Ok, that sounds crazy right? But let’s look at it this way. That is a ton of stuff for one person, I agree, but none of it is bad stuff. My uber positive spin on life right now makes me respond,” ya know, I think it’s the universe telling me that I am finally health enough to take on even more stuff!” Then they give me a weird look and kind of nervously laugh. I go on to explain that I believe in signs and a purpose to just about everything. Whether that thinking is religiously based, spiritually based, or magic based, it doesn’t matter. It only matters if it gets you motivated. Well all these things that have happened have only strengthened my sense of purpose. I like taking care of things. I love how the whole culture of my office has changed. Everyone is happy. Everyone falls over themselves to help each other. We all look forward to going to work every day. I couldn’t possibly have it better and I’m saying that even though we are still regaining economic strength with the new billing company and I am not consistently getting paid. I am there because I love it and I appreciate my whole work gang! They pay attention. They actually watch me for signs of burnout like I watch them…unprompted! It’s amazing. I wanna keep that going as long as I can. It’s a team effort. Being a good leader also means recognizing the skills of everyone around you. I only hope everyone can have a work environment like mine. You can, but you gotta work for it.
For a long time now since my chemotherapy ended, I have endured the effects of hypothyroidism because my poor thyroid was chemically destroyed with little hope of its recovery. The thinning hair, the dry skin, the ridiculous fatigue and the inability to lose weight have become a part of my daily routine, despite constant medication dose adjustments, doctor’s appointments, etc. Don’t get me wrong. I am extremely grateful that my liver and kidneys recovered. I can’t live without them, but this thyroid stuff is still a bummer.
Well, just when I’d settled in with those symptoms, my thyroid decided to take a turn and launch me in the opposite direction…..hyperthyroidism. Let’s talk about how it is different.
Hyperthyroidism can result from four main causes. The first is inflammation/thyroiditis of the gland due to viral infection, medication side effects, or pregnancy. The second is Grave’s disease. The third is taking too much thyroid medication. The fourth ( although very rare) ifsfrom non-cancerous growths of the thyroid or pituitary gland.
Here are the symptoms. There are so many, let’s break them down into categories.
Menstrual- irregular periods or periods that are very short and light
Behavioral- hyperactivity and irritability
Eyes- puffy eyes or protruding eyes
It all sounds fabulous doesn’t it? Nope! I was looking up risk factors for hyperthyroidism. The most common ones are family history of thyroid disease, pregnancy, chronic illness like pernicious anemia and adrenal insufficiency. I haven’t really seen my reason in many resources: the chemo destruction of the thyroid, but I can tell ya, it exists and is very difficult to treat.
All of these symptoms sound pretty annoying but not life- threatening, right? Wrong! Hyperthyroidism needs to be treated! If you have any of these symptoms, you need to see your doctor. Let’s look at what happens if hyperthyroidism goes untreated.
It can lead to weak, brittle bones and osteoporosis. Our bone strength depends on the amount of calcium and other minerals in them and too much thyroid hormone vastly decreases our calcium absorption.
Thyroid eye disease can develop. This affects the muscles and tissues around the eyes leading to bulging eyes, gritty sensation, pressure and pain in the eyes, retracted eyelids, red eyes, light sensitivity and even double vision. These untreated problems could even lead to loss of vision.
It can lead to a dermopathy that causes the skin to change color and swell. The swelling is often so significant that the skin on the shins and feet literally shins to the eye.
The most dangerous potential complication of untreated hyperthyroidism is a thyrotoxic crisis or thyroid storm. This requires immediate emergency care. Symptoms can include fever, tachycardia, nausea, vommitting, diarrhea, dehydration, and even delirium.
The first step in getting diagnosed is to go to the doctor. Get a thorough history and physical exam. The doctor will look for signs like tremor, overactive reflexes, moist skin, rapid pulse, eye changes, etc. They will examine your thyroid. labs will be ordered like T4,T3 and TSH(thyroid stimulating hormone). Make sure you are fasting when you get these tests. Also make sure you are not taking any b vitamins like biotin for at least 3 to 5 days before. If your tests are positive, you will probably get a thyroid usn.. If there are nodules, you will probably have to have a radioiodine scan.
How do you treat hyperthyroidism? Anti thyroid medicines are one option. They prevent the thyroid from making too many hormones. They usually take several weeks to work. Beta blockers are a symptom treatment option because they can bring down the rapid heart rate and tremors. They don’t do anything to the thyroid hormone levels though. Radioiodine therapy is an option. This makes the gland shrink and usually makes it underactive. This can lead tro hypothyroidism, which also needs to be treated. The most drastic option is removal of all or part of the thyroid. This is reserved as a last resort if meds , iodine etc are not an option or did not work. There are risk to this surgery which include,but are not limited to damage to the vocal cords and the parathyroid glands.
The bottom line is that hyperthyroidism needs to be taken seriously because serious complications can occur. So, if you have any of those symptoms, please seek a doctor’s care right away.
Just remember. This is supposed to be funny, but with a side of truth.
You know, my life is full and interesting. I get to help people every day and do what I love. That makes me one of the luckiest people I know. I will never forget that. I used to think, before I actually went into medicine, that every patient that would walk in that door wanted to be there and would be ready to be a part of their own healthcare team. Weirdly, that is not the case. This is true for a large portion of my patients, but for some, I am not so sure.
As I reflect over the last 20 plus years, I realize that there are several types of patients in my practice. Let’s review.
There is the patient that you inadvertently become friends with and become attached to. To some extent, this happens to me all the time. I always try to bond with my patients in attempt to care for them better. I try to get insight into their lives to help them through whatever issues they are trying to solve. They always tell you in medical school never to get attached, but sometimes I can’t help it. In my mind, it is a reflection of the depth of my caring. I am always careful to respect doctor patient boundaries though. It’s not like I go party at their houses or anything.
There is the patient that doubts literally everything you say. I mean everything. For every plan you come up with, they have a counter plan or they doubt that it will work. They question your every move. They constantly re ask the same questions to see if they can trap you into giving a different answer. I realize that most of the time, this has nothing to do with me. Often, these are patients that have been bounced from office to office without actually getting the help that they need. Or, worse yet, they have had a bad experience or suffered malpractice and this makes it very difficult for them to trust any doctor. I try to take that into consideration when working with them.
There is the patient who thinks THEY are the doctor. You know the one. They grew up with family members or friends that are physicians and they know just enough to be dangerous….to themselves and your 16 plus years of schooling are not going to change their mind.
There is the entitled patient, who thinks only of themselves and becomes indignant when attention is not focused on them. These are the patients that become irate when their pap smear is interrupted because I have to run to the hospital to save someone who is hemorrhaging. The “big picture” is somewhat lost on them. They want special treatment and have tantrums when things do not go their way, regardless of the reason. I try to set very clear communication and expectations with these folks, but sometimes they get upset nonetheless.
There is the patient that “never goes to the doctor.” This is the patient that hasn’t been to the doctor in years because they haven’t had any symptoms. This is the patient that doesn’t trust doctors and has to make sure you know it by repeating the first two statements multiple times during their visit. However, if this same patient suddenly has an issue that they determine to be urgent, you had better drop everything and address it right away. Never mind that they have neglected their health for years. It is up to you to fix it….and quickly……so they can go back to never coming in for check-ups.
Let’s not forget the self-diagnosing patient. We all know that with the help of Google, our friends, our family and the chiropractor, we can figure anything out on our own, even before reporting to the doctor’s office. Those are the folks that come in convinced they have a rare tropical disease because Doctor Google said so after they typed in their symptoms. It is often very difficult to talk them out of it, but I try. Half the time, they are apologizing for looking stuff up in Google, as they are insisting that it has to be correct!
There is also the patient with overbearing family members. In my case, this most often presents and the teenage patient with the anxious parent. The parent is often on a covert fact-finding mission to discover if the teen is sexually active or not. They talk over the patient, and try to fill in all the details to show how concerned they are, but then don’t really seem to want to hear what the teen has to say. I get that they want to make sure the patient gets what she needs, but this behavior only shuts down any potential successful communication that I was hoping to have the patient.
There is a final category. This is the one we spend our whole careers hoping to encounter: the patient that reminds you why you went into medicine in the first place. This is the patient that appreciates what you do for them and how you care for them. This is the patient that is nice to your hardworking staff. This is the patient that follows through with what you recommend. This is the patient that talks with you not at you at the office.
The bottom line is that my job offers infinite variety. All of these patient types keep me on my toes and my mind fresh and ready for anything. They each have their own advantages and challenges. It’s not exactly how I thought it would be, but I wouldn’t change a thing.
The overall good news is that we are getting better and better at helping patients survive cancer. Awesome! Whoohoo! The double-edged sword side of this is that as people are surviving longer and longer, we are getting to know more and more about late side effects from chemotherapy.
So, what is a late side effect? A late side effect is a side effect that you experience after treatment is over. These can occur even years later. What?! These late side effects can result from any type of cancer treatment. So far I have experienced significant neuropathy, muscle pain, headache, nausea, severe hypothyroidism, renal dysfunction, “chemo brain”, stomatitis, significant fatigue, cough, shortness of breath and hot flashes. I may be forgetting a few but those are the ones that come immediately to mind. To be honest with you, I am kind of over it. Enough already!
The main types of cancer treatment so far are chemotherapy, hormone therapy, surgery, radiation, targeted therapy and immunotherapy. Let’s look at each one. Now, before I go into this, I want to remind everybody that technically we all get counselled and have to sign a consent form before receiving any kind of cancer treatment in the first place. Some places do it better than others. Most sit down and do a one on one chemo teaching session in which the patient can ask questions and get clarification. This is a great opportunity to really START to appreciate what you are getting yourself into. Unfortunately, after this great teaching session, there is usually still a 20 plus page consent form that you are supposed sign as well. I’ll tell ya, nothing undermines your confidence like thinking you just covered all your bases and then you get this huge document plunked in your lap that you are supposed to pour through to make sure you really get it. I think a lot of us do our best but there is no way to digest all that additional info efficiently in a short amount of time, but we sign it anyway because we really want that cancer gone. This is a tough spot for any patient to be in because you really want that cancer gone, but you don’t fully realize what you possibly consented for in exchange. Yes, I am talking about side effects and other potential cancers. This is what we are going to talk about.
Let’s look at the kind of late side effects that are possible with each type of treatment. First let’s look at chemotherapy. Chemotherapy can cause a multitude of late side effects like early menopause, hearing loss, increased risk of other cancers, lung disease, nerve damage, reduced lung capacity, osteoporosis, and dental problems.
Now let’s look at radiotherapy. Radiation therapy can cause all kinds of late issues as well, such as cavities, tooth decay, increased risk of other cancers, coronary artery disease, increased stroke risk, hypothyroidism, heart and vascular problems, early menopause, intestinal problems, memory problems, osteoporosis, infertility and lymphedema.
Surgery is another mode of targeted cancer treatment. The main side effect of surgery is infection risk, at the time. The main late effect of surgery is lymphedema in the area that was operated on.
Hormone therapy is another type of cancer treatment. With hormone therapy comes the risk of blood clots, hot flashes( for men and women), menopause, sexual side effects, osteoporosis and the risk of other cancers.
The last two main categories of cancer treatment are immunotherapy and targeted therapy. These are still new enough that we don’t know a lot about possible late side effects. Lucky me, I fall into this group. Actually, I fall into the immunotherapy and the chemotherapy group. I’ll keep you posted.
The point I want to make is that it is not all in your head when you are still having symptoms long after chemo. We really don’t know a way to prevent them. If you are having them though, make sure to speak up to your doctor and make sure something else is not going on. Even when your cancer is over, it is still your job to continue to advocate for your health.
My last day of chemo was June 9th, 2021. It was a day I looked forward to for a long time. I thought for sure that it would be the beginning of everything being all right again. I thought I would feel different. I thought the sun would immediately shine brighter and the birds would sing louder and all would be right with the world. I even thought that somehow the last chemo session would be easier, just by knowing that it was the last one for awhile.
To tell you the truth, I could not have been more wrong. For one, the last chemo was no less intense and grueling than all the others. In fact, it was worse than the others because the cumulative side effects somehow intensified and lasted longer. I didn’t feel better immediately either. Surprise surprise. I was still tired all the time. I still had fatigue. I was still swollen. My gi tract still didn’t work and I bloated like a nine month pregnant woman every time I ate to the point that I could hardly breathe. I couldn’t push a grocery cart by myself without getting so winded that I had to stop and rest. I had ptsd every time I had the slightest twinge, wondering if this time the symptoms meant something like they did last time. The sympathetic head tilt looks didn’t instantly stop after chemo was done because I was still bald, which was a visual hallmark of continued illness. I had multiple organs try to fail, some still are trying, from chemo side effects, which brought on many more complications. On top of all that, I was struggling, and still am, to rescue my business from everything that had happened during the pandemic and when I was actively sick. It was all crushingly disappointing.
I think the biggest problem is that I wasn’t mentally prepared for any of this. I just wasn’t expecting it. My logical self should have assumed that it was impossible for everything to right itself immediately. However, my chemo patient self was ready for any cheerful fantasy to be true instead. I had a lot of help with this misconception. At my last chemo appointment and doctor’s visit, everyone acted like a huge celebratory gong was to be rung and that it would be all smooth sailing from there. Congratulations flowed all around, uplifting my mood. I can remember stumbling to my car and suddenly breaking down into tears of joy as We Are The Champions came on the radio. I understand the focus of that final visit was to rejoice, but I think it would have been helpful to have a small dose of realism injected in at the same time. I am not talking about not celebrating. I am just talking about balancing the good end of treatment news with some tips about potential complications, what to expect, and how to realistically move forward. I think it would have saved me a lot of frustration and disappointment. I understand so much better now from experience and I have definitely had success in making my way post chemo and I am very grateful for how I am doing now, but I feel like the journey could have been a little less scary with some prior warning.
Wow! There are so many things they don’t tell you about being a cancer patient! When I say “they” I am referring to a proverbial all-inclusive group of people that includes everyone that is in charge of your care and even other patients who are unable or unwilling to share their experiences. I am learning a lot as I go and I am convinced more than ever that it is my mission to pass on what I know or have experienced to all of you. I am still determined to be the flashlight that helps guide patients through both their cancer experience and what comes after.
So, here is what I have realized. It is not really over until it’s over. What the heck do I mean? Let me explain. Most of us logically assume that when the last drop of chemo has coursed it’s way through our blood stream and the most recent scan confirmed that we are cancer free, at the moment, that we are, in fact, done! Yay! Hooray! Whooo! It is time to party, right? That’s what I thought. I really truly thought, or at least hoped, that the moment I got that final good news that this warm and fuzzy feeling of overall cleansing and good health was going to wash over me, my energy and health would be renewed and I would be ready for anything that came my way! Nothing could have been further from the truth. Now I am not blaming anybody. Nobody told me that that was going to happen. I am solely responsible for my own rose-colored glasses personal patient vision. However, nobody counselled me to the contrary either. I was just kind of left to figure it out after my perfunctory but heart felt congratulation speech from my health care team.
Here is what really happened. I got my good news. I was elated at the moment and kind of skipped out to my car( and then got short of breath from skipping..lol). Then I got into my car and, ironically, We are the Champions by Queen came blasting on the radio. I then proceeded to sob hysterically for about 20 min before driving home. I want to believe that the tears were all happy, but now I am not so sure. My mind started racing with all kinds of different thoughts ranging from yeah, I’m free to omg what do I do now and who is going to look out for me? My head was completely spinning. I had to take a minute before my head was clear enough to drive home. I started to realize that this was not really over. I had the next five years of my life mapped out with repeat scans and follow ups. Was it going to really be over then? What if I got some weird symptoms or twinge in the wrong place? Should I ignore it or should I worry because something else might be wrong?
I spent some quality time trying to talk myself down from the ceiling and rationalize the fact that I would need to give myself some time to be able to process information from my body normally again. That lasted all of a few minutes before I was on the phone to my therapist, making sure that I had regular appointments scheduled for the next several months. I was not going to be able to do this alone and I wasn’t allowed to restart my anti depressant for another month or so.
Ok, so now I had my therapy appointments in place. I rebooted my calm app on my phone. I reached out to my friends and fellow patients. I felt like I was doing everything right, or at least what I could do at the moment. Everything was going to be ok right? Nope! Then, the later complications of chemo started rolling in. My liver and kidneys took some hits and had to recover and my thyroid died completely. All the symptoms I was having that I was trying to assume were psychosomatic were actually real! Some of the stuff could have actually killed me! Thank goodness that we have modern medicine and options for all of them, but still scary nonetheless. There was no room for relaxing! There WAS still stuff to worry about! I knew it! My doctor said that some of these complications and side effects could be a factor for years afterward. Fantastic! I understood going in that there was going to be a risk trade off in exchange for curing my cancer, but on some level, I don’t think I fully understood just how significant the risks would be. I don’t think any patient does.
Here is where I think we need to do better for patients. We need to do better than handing someone a stack of papers several inches thick to read over and sign. We need more than just one chemo teaching session. We need to counsel patients that complications are real and that we need to have a reasonable level of vigilance after treatment is over. We need to recognize that PTSD is real and affects people that have experienced any kind of trauma, whether it is casualties of war or cancer. There needs to be a plan in place for those kind of things BEFORE they happen. We need to shape patient’s expectations for their treatment and for themselves BEFORE things happen. We need to give the a glimpse into what can happen and what they can expect and let them know that we have tools to address all of it. I have to believe that being proactive could potentially save a lot of suffering, both physical and mental, for patients. It has to be better than being behind the eight ball and struggling to deal with all of these issues when they are already full blown and both your mental and physical energy is already depleted.
Here is the bottom line. I am proposing a new plan. First, start with detailed one on one counselling before treatment starts for as many sessions as necessary with the key goal of shaping expectations and making preparations. Second, assign each patient a mentor who has actually gone through the process that can be a touch stone throughout treatment and beyond and who can offer encouragement, and more importantly, guidance and reassurance as things happen. Third, anticipate the possibility of PTSD, complications, and side effects after and during treatment and try to prepare the patient as best as possible. Set them up with therapy from the beginning. Start them on medications if possible during treatment. Be vigilant for side effects and try to catch them early. This all sounds like common sense but I am willing to bet that it is NOT common practice. I truly feel that implementing these few extra steps would have a tremendous positive return on patient recovery and outcomes that would far outweigh any additional healthcare costs incurred. I guess it boils down to what the true goal is : patient survival in terms of numbers versus patient survival in terms of whole health, mental and physical. Last time I checked, we are all more than just a number.
This question actually has multiple answers and is a more complicated process than selecting a primary care physician. The usual selection criteria apply of course: 1) Is the doctor in your network? 2) Are they local and easy to get to? 3) Does their availability(office hours) fit your availability? 4) Do they have good reviews? 5) Do you know anyone personally in your family or friend group that already sees them so that you can get firsthand feedback?
These are good to go by when attempting to select any physician, bearing in mind that reviews on google can be written by anyone anywhere, even if they have never been in the office in question. Having family feedback is good as well, provided that you know the whole story surrounding their comments. ( i.e Grandma Martha hates Dr. X, but also has multiple no show appointments and owes the office a lot of money that they are rightfully trying to collect) You see what I mean? Even the seemingly best source of information does not compare to your own personal experience.
Having clarified all that, I feel that selecting an obgyn adds yet an additional level in selection complexity. Finding the right obgyn means finding someone with a communication style and listening skills that make you feel comfortable enough to discuss some of your most personal and potentially embarrassing issues. I mean, you can’t go discussing your vagina and hormones with just anybody. Hopefully you are able to find somebody that listens and “gets you” at the same time.
This is the kind of thing I strive for the most….the listening part I mean. It is so so important. Many of the women that I see are frustrated because they have spent years dealing with unresolved issues because they either did not feel comfortable mentioning them to their previous physicians or they were dismissed. This should never happen. Every single patient deserves to be listened to and, in my opinion, if they have an issue that you are not prepared to deal with, they should be referred onward to someone that can. The patient should never have to suffer due to your lack of comfort or familiarity with their particular problem.
I received a compliment once from a patient that I did not understand at first, but now I consider it one of the best compliments I have ever gotten. She said that coming to my office was like coming to a girlfriend’s house. At first I thought, what the heck does she do at her girlfriend’s house? My face must have registered my confusion for a minute because she went on to explain what she meant. She meant that I was able to make her so comfortable at my office that she was able to disclose and discuss anything and everything that she wanted to. That is my job, my sacred mission, and what it’s all about. Have a great night everybody!
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.
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.