There may be light at the end of the tunnel, but it is still very dark. The hole is closed, the stitches are out, and I have hope that my skin will stay intact. I had another infusion on Christmas Eve and have only two more to go. Soon the port will come out, and then I will just have the daily pill. Yay!
This morning, Wednesday morning, 12/30, I planned to polish up this entry and post it. But then I got a phone call, the phone call that caused me to change the tense of some of these sentences. Although the cancer journey has been challenging, and the news of the outside world has been horrendous, my greatest source of pain, worry, and anxiety over the last year and a half has been for my family. And that continued.
Since I last wrote, mom was diagnosed with a brain tumor. That explained a lot. It is likely that she never had a stroke last summer and that the symptoms were from brain irritation caused by the beginnings of the tumor. The tumor grew to be quite large. Its location in the front right portion of the brain accounted for the confusion, apathy, and lack of self-advocacy evident in mom these last months, as well as the frequent falls, probably due to seizures.
I wanted the immediate help of hospice, and it turns out that they cannot deal with electronic signatures, even though I sold my parents’ house that way. Two days after talking with the neurosurgeon, I spent the day in Richmond. I visited mom in the hospital. It had been a month since I had seen her, and the rapid decline was evident. I had to prevent her from eating a plastic jelly container, and she kept saying that dad was in the bed next to her. She was also deeply engaged in tracing the lines in a coloring book. I was glad to spend the time with her, however distressing. Hospice met me at the hospital, and I took care of the necessary paperwork.
My next stop was the place where she had been living. Thankfully, they had room in their memory care unit, so I took care of the paperwork for that, and I gave them a list of furniture to move from her apartment to her room. It was the first time I was inside the building since February. Given my extremely low white blood cell count, one can certainly question my judgement, even more so after I got the call three days later that staff members had tested positive for the virus. I happened to have two weeks of no in-person medical appointments, probably my first such weeks of the year, so it was easy to quarantine.
A week after that call, I got another. Mom tested positive. I totally fell apart. After keeping my grief at a low simmer over the last year, it finally came boiling over. It was time.
I got to have a video chat with mom last week. Although easily distracted, she knew who I was and did not seem distressed at all. After a horrible year for mom, it seems that grace had descended to make things more tolerable for her.
Last night I talked with the head nurse in the building who said that mom was out of quarantine since she was symptom-free for ten days. She looked good. Later that night she refused to take her meds. And early this morning she passed on in her sleep. She was done. In the end, I believe that she died of heartbreak. She and dad did everything together for 63 years. One could not even go to the store without the other. Dad died in January. Mom just wanted to be with him.
With these bookends to the year, I am done with 2020. Happy New Year to all! May we hope for a better, kinder future.
The hole is closed, and hopefully it stays closed! Because it’s me, there’s a story…… I didn’t want to be put out, so I was awake the whole time. Just as the surgery was about to start, the power went out. I was waiting in the room when I saw the lights flicker and heard a commotion outside the door. Someone opened it to check on me. My room was somewhat lit by a window, but the hall looked mighty dark.
My surgeon came in and injected the area with a lot of pain killer and then went off to get his headlamp. Seriously! He returned and said it all meant good luck for me. He asked me to keep my eyes closed and talk about something else while he cut away tissue that had been exposed or didn’t appear to have any blood flow. I managed for a while but then watched him put in the last two stiches.
At one point he said that the power going out was a sign from God. I asked, “what did She say?” They laughed, and the surgeon said She was confirming that it was smart to have the surgery and that the lights would go back on when he finished. They did not and I was led through the dark offices and corridors with a flashlight. I can’t make this up!
Thanksgiving is almost here, and I am thankful for a lot, including you. I hope your celebration is as good as it can be. Stay safe, and may we celebrate in full force next year.
Remember that surgical wound that opened three and a half months after the second surgery? A month later, and the hole is still there, unchanged. Nothing has healed. It’s still open and still oozing, although less than before. To try to avoid a third surgery, he said I could pack it, myself, every day, for a month. “Pack it,” I asked? I held a mirror as he showed me the hole. It truly is a little cave, about a half inch deep. He then twisted a gauze and stuffed it in. He said just push it in with a Q-Tip, until you feel resistance. The next day, pull out the old plug and stuff it with new gauze. Every day. For a month. Even I was grossed out at the thought, and a half hour later my hands were still shaking. Yuck.
Later that day some friends suggested I just have the surgery and get it over with. I called the office and, yes, I can do it next week. Tuesday it is. So that I don’t have to undergo anesthesia again, they will just give me a local and I’ll be awake as he cuts it open, cleans it out, and sews it back up again. Yippee!?! When I agreed to just a local for a foot surgery some years back, the deal was I could take photos. I suspect they will not allow me to photograph this. A little awkward, too, given the proximity to my face! The plastic surgeon is very cute, however.
I have a week off for Thanksgiving and was wondering what I would do with my time. This is one activity to look forward to. By the way, I asked the nurse to take a photo of this hole. Let me know if you’d like to see it! (Only one person asked to see my green pee photo. I was disappointed. Oh, well.)
Last week one of my surgical wounds opened, 3 ½ months after the second surgery. Liquid dripped out of me. For days, I worried that I would need another surgery. Well, it turns out that it shouldn’t be sewn back up! The plastic surgeon thinks that some liquid got trapped and now needs to come out. He pulled out some scissors and started snipping. I said, “what are you doing?” and he said he was just cutting some skin. And then he pushed and squeezed and pushed and squeezed. I guess I’m glad for all the nerve damage I have. My instructions are to not look at it, change the bandage two times a day for a month, and hope that it heals itself. When I looked (of course I had to!) I saw why he asked me not to – it’s a hole! The wound is not infected, but thick yellow stuff keeps coming out.
After two days of pulling off paper tape, my skin became covered in red marks. During a chemo session I asked the nurse what I should do. She contacted my oncologist and then showed me the response via text: “she’s sensitive to everything!” I swear, this is all new. I have never had allergies and never had any known “sensitivities,” but my skin is truly a mess. A nurse at the plastic surgeon’s office suggested I stop taping it but hold the bandages in place with something tight. I tried wearing a surgical bra again but that pretty silly stiff stuff irritated my skin as well. I finally found something much softer. My skin now reacts to all cleaners except for beta iodine, and all adhesives, including the gentlest paper tape. The radiation area is now a dark brown and some skin has peeled off. Yesterday my physical therapist recommended that I send a photo of an odd rash to my oncologist. I did but haven’t yet heard back.
I suspect I will never grow hair completely across the top of my head. Fuzz is growing in on the sides, but the top remains spotty. My oncologist said she has had that happen to only one patient before (of course!) and that person had thinning hair going into chemo. Hmmmm. So did I. She arranged for me to have an appointment with a specialist at Johns Hopkins in Baltimore but did not seem hopeful. I hope you like my cute caps. That may be my permanent look.
My blood numbers are still extremely low. They had recovered from chemo before my first surgery in July, but they plummeted during the surgery and I had to have a blood transfusion. Last week’s tests show that they have not recovered much. Red blood cells, hemoglobin, and hematocrit are all very low, and now my white blood cells are low as well, making me especially prone to infections. The oncologist said to wait before becoming concerned. “Sometimes these things fluctuate.” I’ll try to be patient
Even the shoulder injury that showed up before the surgery is strange. Once the physical therapist isolated the problem, she conferred with the other therapists at the Rehabilitation Center at Sibley and sure enough – no one has heard of this problem before. I’m so honored.
That’s my latest. Hopefully we will all survive the election. Till next time…
It has been a month since my last post! What happened? I guess that means I’m doing well, and I am.
School started and I teach remotely. That is going far better than expected. And I’m feeling great. I have a large chunk of time in the late morning, and if I’m not at a doctor’s appointment, I try to do my 2.5 mile hike in the woods nearby. The fact that I have the energy to do that is fantastic.
On Sunday I did some Taiko for the first time in over a year and a half. Taiko is Japanese drumming. Think big drums and big sticks. The class was limited to 12 people and we did it outside, masked, in the bumper car pavilion at Glen Echo. After three hours, I was sore, exhausted, blistered, and so happy! That communal spirit is such a great feeling, and during these times, it is quite cathartic to hit a big drum with big sticks.
Life has been busy. Chemo continues every three weeks (now just the immunotherapy drugs which have few side effects), interspersed with lots of physical therapy to deal with the consequences of the surgery and to help loosen a frozen shoulder. And I have radiation every day. And teaching full time.
Compared with chemo and surgery, however, radiation is a piece of cake. In fact, it wouldn’t be any big deal at all except that I need to use a breathing machine to push my vulnerable liver out of the way. They put a snorkel in my mouth and nose clips force me to breathe through a tube monitored by a computer. I hold a grenade-like device that will stop the radiation if I let go. When I’m ready, I take a gigantic breath and hold for 35 seconds while getting zapped, four times each session. It’s a little tricky since I have a hard time breathing well when that flat, and it’s almost impossible to swallow because of blocked eustachian tubes. For the normal radiation sessions, it’s short enough to be tolerable. When they were doing the initial set up, however, I was in that position for 1 ½ hours as a mold was made, I practiced using the breathing machine, they tested and confirmed breathing patterns and capacity, I had CT scans, was tattooed, written on, and photographed from seemingly every angle. A week later I had a “dry run.” I thought that meant a normal radiation session without radiation. Nope. More measurements, drawings, and adjustments. That took about 45 minutes. So, after all that, my daily radiation sessions (in and out in 15 minutes) are nothing.
I’m not sure how much more I’ll write. Once the radiation is finished, all that is left is chemo every three weeks through February and five years of meds. The worst is over and I’m feeling great. Much of that is due to the support of people like you. Thank you!
When I was hiking in the woods in July, I saw four bucks. Seeing deer is not that unusual, but seeing a buck is. And there were four. Just standing there and unbothered by me. One kept staring at me. I saw them again the next day, in the same spot. Someone said that maybe it was my dad checking in. The next day they were not there, and I never saw them again. Maybe dad saw that I was okay.
But I don’t feel okay now. Physically, I’m great, except for a few weird things going on. Are they important or not? I don’t know. But mentally and emotionally, I’m at a low point. Why now, of all times? Probably because I’m overwhelmed by getting ready for school, as are many of my colleagues. I felt successful teaching remotely last spring, but that wasn’t hard. The pivot was so sudden that expectations were low. Now that we are starting school this way, and for an unknown length of time, expectations to do this well are much higher. Given the situation, I plan on being extra gentle with my students. Perhaps we need to be extra gentle with ourselves as well.
And helping mom continues to be overwhelming. All the bills and paperwork and calls about falls and requests to buy this and that …..is a lot. And talking with mom is different and confusing and, at times, disheartening. In my gratitude list in the last post, I forgot to mention the most helpful person of all, my “on the ground” local family friend who has taken on the huge task of helping mom and me in many different ways. I can’t imagine doing this without her.
In terms of medical stuff, my second surgery went fine. I met with the medical oncologist who commented on the rareness of getting a complete response to chemo. But she also said that not only do I still need to do the additional 11 infusions of immunotherapy drugs, and the radiation treatment, but oh yeah, when I’m finished with all that, I need to take an aromatase inhibitor for five years too. What? I swear I never heard that before. I think they were initially excited by the aggressive nature of the HER2 positive tumors, but now that the end of treatment for that is in sight, they are now looking at the fact that the tumors were also estrogen positive. Time to bring out the estrogen blockers. I can look forward to hot flashes again (third time!) as well as muscle and joint pain. Hopefully, we can find one that minimizes those side effects.
Last week I had my initial appointment with the radiation oncologist. Because of Covid, they accelerated their transition to fewer, more intense doses of radiation. That means just a month of treatments, rather than six weeks. She is concerned about my liver, however, because I have Primary Biliary Cirrhosis, an autoimmune condition. There is a technique in which I could take a deep breath and hold it while being zapped. That pushes the liver out of the way, but since I would need to breathe through a machine coordinating with the zapper, I won’t be able to wear a mask. This Thursday a CT scan will show the position of my organs, and I will get tattooed and have the form made so that I’m always in the same position. The surgery has caused some “cording” in my arm, and combined with complications from the mystery needle, I still can’t stretch out far enough to lay there for 30 minutes, with my arms over my head, but I’m working on it.
Surgery was two weeks ago today. Since it’s me, things didn’t go perfectly smoothly.
Really Good News
Pathology report showed no evidence of cancer, anywhere. The cancer surgeon said that it is extremely rare to have cancer in the lymph nodes before chemotherapy and no cancer afterwards. I could not have had a better response to the chemo. It worked! I still need radiation since only six lymph nodes were removed. Next week I will find out if there is any change to the planned infusions of immunotherapy drugs (every three weeks through February). Of less importance, but comforting, my plastic surgeon (my friends laugh when they hear me say “my plastic surgeon”) apparently did a good job, so much so that at a follow-up appointment with my cancer surgeon, extra people came in to stare at me. When they realized the awkwardness of the situation, someone pointed out that “we are all just in awe” of the work that he did. Is a modeling gig in my future?
Since I am a scientist by training, I think almost everything is cool. Even green pee. That was the result of the radioactive dye.
In pre-op, two things happened that took me by surprise. One was the artwork that the plastic surgeon drew on me. He worked efficiently, with his three pen colors and measuring tape, but it still took a long time. The result was an impressive, rather artistic, geometric design. He was preparing for his part of the surgery, a rather new, complicated technique called the “Goldilocks Procedure,” in which the extra skin is saved and folded over to create…I don’t know how else to say it…mini boobs. I took a small selfie to share with friends. The cancer surgeon, with her sense of humor, saw me and took a full image, one that would be unwise to send over electronic means.
The other thing that happened began with the arrival of an old-fashioned Geiger counter. A doctor came in and injected me with radioactive dye and then used the Geiger counter to make sure that it spread like it should. It was a little disarming to have the machine make a racket when it was near me. Once I was unconscious, more dye was injected. The dye is attracted to lymph nodes so that they can be mapped, allowing the surgeon to find the sentinel nodes which are the first nodes into which the original tumor drains. Lymph nodes are important to test because they are the main avenues for cancer to spread, but you don’t want to remove too many because that can cause edema, or swelling, in the nearest limb. In my hospital room after the surgery, the nurse put a bright white plastic container in the toilet so they can measure urine output. Well, that made the result of the dye even more startling; the pee was a very, very dark green. I later mused that I should have taken a photo. My nurse heard that and after the second encounter, she reminded me – “didn’t you want to take a photo?” 😊 So I did. Let me know if you want to see it! It took about 24 hours for the dye to get out of the system.
I had a not uncommon side effect of anesthesia, but the IV anti- nausea meds helped. I also had very low blood pressure the entire time I was in the hospital, getting as low as 92/39. And heart rate was in the 90s. In addition to constant fluids, they gave me three rapid infusions, but nothing worked. The morning after surgery my bloodwork became a concern with red blood cells, hemoglobin, and hematocrit very low. These numbers sometimes drop after a major surgery, but my numbers were particularly low and odd, given that I did not lose an inordinate amount of blood. When they checked it again 12 hours later, the numbers dropped even lower. No one has yet been able to explain this. It might be related to an odd iron situation picked up by NIH (I go there every three months for another medical journey) that no one has been able to explain (tests were done to detect internal bleeding but came back negative). My oncologist is also a hematologist so maybe she can figure it out. I stayed a second night, and the next morning my cardiologist stopped by and said, “you’re a mess.” (I appreciate her sense of humor.) She said that my heart is fine and suspected bone marrow issues. Maybe the chemo affected my body more than we thought (it was a difficult regime) or maybe there is something else going on. For the immediate situation, they gave me a blood transfusion. It was a first for me, and a little disconcerting because it involves a different set of staff, wearing different uniforms. You need to sign a bunch of papers (saying that you understand that you could get HIV, hepatitis, etc. etc.) and then you are monitored for the first 15 minutes to see if you have a bad reaction. It was an interesting experience to watch someone else’s blood slowly make its way down the tubes and into my hand. I went home soon after and a blood test a week later showed that numbers have improved (but are still way below the lower limits of normal).
Another complication showed up when I visited my plastic surgeon five days after surgery. Apparently, I have developed an allergy to steri strips, and my incision was lined with blisters. He pulled them all off, and another procedure was added to my daily schedule for the next week. This involved me using a mirror to remove five large abdominal bandages, pull off three long, oil-infused gauzes, replace everything, and then put on a tight bra to hold everything in place and to try to reduce the swelling. Since I hadn’t really seen myself yet, the ritual left me shaking most times. It was rather gruesome, even for me. During my second visit to the plastic surgeon, it became clear that I need another surgery to repair an area where the skin just didn’t make it. I think it is related to the blisters and early removal of steri strips, but I’m not sure. That surgery is scheduled for Monday at Fairfax Inova Hospital. Relatively speaking, just another bump in the road, but really???? I had my phone interview with Inova this morning in which I learned that I am scheduled for a “Revision Scar Complex Closure.” She just now called me back when she saw the guidelines about having a blood transfusion within three months of surgery. My heart stopped for a bit, but it means that I need an in-person visit with a nurse practitioner at Inova. Fortunately, there was a spot available near the time of my Covid test this afternoon. Phew!
I had a nice chat with mom the other day; some of her memory is coming back. Since I haven’t seen her, in person, since February, it’s strange to hear all the updates long distance. Because she is no longer making enough progress for her to stay in rehab, she will return to her apartment next week. She may never recover the cognitive skills necessary to do all the steps involved in ADL, “activities of daily living.” Fortunately, the place is outfitted to be “age-in-place,” so she will not have to move to go from independent to some level of assisted living.
I am, of course, very grateful for the tremendous news that the chemo was effective and that I am finished with the worst of the surgery. The medical staff are doing an amazing job, and most do it with tremendous kindness and some with a great sense of humor. I am thankful for people who donate blood, a precious gift. I remain grateful for all the people that continue to help me, each in their own way. I continue to get cards, from the serious to the hilarious; calls ranging from the simple check-ins to deep emotional support; and gifts of books, flowers, puzzles, paint-by-number sets, produce, and masks. I don’t need any more things to do, by the way – school is starting soon! For the last few weeks, I have enjoyed meals from many people, and rides to my appointments which have the added benefit of actually talking with humans in relatively close proximity. And I am also grateful to you, a reader of my blog and one who has made it this far. Thank you!
This has been a year from hell. Starting in August, when dad fractured his back, it has been one thing after another: dad in rehab, realizing he can never go home, my moving them to assisted living, furnishing the new place since their furniture was too big, my cancer diagnosis, horrible holidays, dad’s death, clearing out of the house, selling the house (all of this when I live 150 miles away), chemo, the virus, social isolation, etc. etc. etc.
But none of that was the thing that has been bothering me the most. It’s been my worry for mom. I could never talk about it because mom read my posts. I don’t think she ever will again, so I have decided to risk sharing this part of my story.
This photograph was taken a year ago today. I planned yearly trips with my folks, and last summer we rented a beautiful place near the ocean. We had a great time. Our last trip together.
For a while, now, mom’s mind has been changing. But no one talked about it. In many ways, it was a blessing that dad had to go to assisted living because it was a way to get mom there too. But it was very painful. She made it abundantly clear she did not want to go, and once there, she made it very clear she hated it. Dad was more easygoing, but this upheaval was very traumatic for mom. That was in December. Dad died in January. Mom was overwhelmed with grief. They were a tight pair and did everything together, even their haircut appointments, for 63 years. She had never lived alone, and now she was in this strange place, by herself.
Mom was traumatized and angry. Fortunately, she signed papers that allowed me to sell the house. Her home. That whole process was so painful. Mom visited the house, every Sunday after church, until the virus put her building into lockdown. Even though part of her understood what was happening, much of her did not. Her personality and memory continued to change. It seemed like every time we spoke, either through email or by phone, she expressed her shock that I would sell her home. She lost almost everything. Her husband, her home, and most of her stuff. And because of the virus and my cancer treatments, I haven’t seen her since February.
She started having difficulty with email. And paying the bills. And she sounded so depressed on the phone. Her anger transformed into complete sadness.
A few weeks ago she fell and went into the hospital. A CT scan showed that she had had a stroke a couple of weeks prior. She spent a week in the hospital, and during that time, she forgot that dad died. She is now in rehab to get stronger. She keeps telling the staff that she has to go back to the apartment to be with dad. I fear the day she returns, and he is not there. And if the building is still in lockdown, she will do that alone, without the support of anyone she knows.
All of this is far more painful than any cancer treatment. And yet they are related. I think of the joy evident in the photo. My mom, who loves to travel and to learn, who is so full of adventure and desire to try new things, I believe is still there. I so want to drive down, pick her up, and go on a trip somewhere. But I can’t.
My bilateral mastectomy, with some lymph node removal, is next Friday, July 31. Oh, and somehow I injured my shoulder. Two cortisone injections and lots of heat have helped, but the orthopedist sent instructions to both surgeons to be gentle…
Who would have thought I would ever find myself in a plastic surgeon’s office??? Well, my breasts are so big that it is best if a plastic surgeon closes. With two surgeons working, it should take 3-4 hours for the bilateral mastectomy.
It has been a time of lots of emotions, many beginning with that letter.
Frustration – Getting a surgery date has been very frustrating. It was supposed to be in early July but finding a date that works for two surgeons and the hospital is challenging. Combined with surgeons having the audacity to take vacations, and hospitals beginning to allow elective surgeries again, it has become very difficult.
And I had my third MRI. Not fun, especially with an older machine which required me to go in feet first. That means I knew my entire body was enclosed in a tiny tube. And I could feel my hips rubbing the sides. It took some mind control to prevent myself from freaking out. And I did not wear a mask! The tech doubted that I could since most people can’t. You’re face down so sinuses are draining, it’s warm, it’s tight, it’s long (upwards of 30 minutes), and it’s hard to breath in a mask. At the last minute, I pulled it down when I realized how difficult it would be. So, after isolating myself so carefully for so long, I knowingly breathed into a small cavity lined with a hard surface onto which other people did the same before me. Not a comforting thought. But that is not the frustrating part. The frustrating part is that two days later they called me to tell me something went wrong, and I had to go back and do it all again! And this time it took even longer because they took extra images.
Fear – There is an underlining fear for this whole journey, of course, but I really felt it after meeting with the plastic surgeon and allowing myself to acknowledge the barbarity of a bilateral mastectomy. They aren’t amputating limbs, I know, but it is still a big deal. The incision on each side will begin so far back, it will actually be on the back. After the surgery, I can’t move for two weeks (other than to shuffle around so that I don’t get blood clots), because you’re not supposed to do anything that will raise heart rate or blood pressure and blow out the cauterized blood vessels. During those two weeks I will need to measure and drain the liquid collecting in the bulbs attached to some tubes hanging out. (I think I need to experience that before telling you more.) And a friend who has had this said that I will be like T Rex – arms need to stay close in and you can’t raise them above shoulder level. And the nurse recommended I get a grabber in case I drop something.
A very large bill just showed up on my hospital web page. Did my insurance not cover the second MRI? The one I had to go through because the tech made a mistake? I’ll wait a while before I start panicking about that.
But my biggest fear still involves feeling that fatigue. Whenever I move, my heartrate is very high to make up for the low hemoglobin and red blood cells. I have been trying to walk, but it is slow going and one time I didn’t even make it out of the parking lot before turning around. For weeks, instead of getting better, I was getting worse. But I read that it takes two months to recover for every month of chemo. I need to be patient. Today I think I detected some improvement, so that’s exciting!
Failure – in some personal goals.
Forgiveness – important after experiencing failure, because without self-forgiveness, one would never get up again. The Benedictine motto resonates with me: “…and we begin again.”
Cancer in the time of Covid-19, Part 4
A friend just texted: “As hard as it is to have cancer during a pandemic, it kinda is also a good time because you aren’t missing out on much.” Good point!
No tumors are visible in the MRI images! Not in the breast or the lymph nodes. That means the chemo did its job. It was worth it. Thank goodness. (The original plan of surgery and radiation is still in place to deal with the pesky little cells that are not visible…)
It’s finally official: Friday, July 31. Way later than it should be medically (oh well) and I will still be recovering when school starts. I guess I better get my act together and prepare now.
Last Thursday I made it through my last major chemo infusion. I’ll begin chemo again in the fall, but without the nastiest of drugs. Knowing what was coming, I didn’t want to go. But, being a plodder-througher, I did. Doctors kept telling me that this is not an easy regime, that the fatigue would be intense. Well, yes, I guess it is. This time “it” started right away, Thursday night. Again, I was grateful to be able to sleep for three days straight, although it was more difficult because of the nausea. I was feeling pretty rotten.
To give you an idea of the fatigue: you know that feeling of muscle burn during intense exercise? I realized I was getting that while brushing my teeth. With an electric toothbrush. This morning, five days later, I felt the burn just getting out of bed and walking across the room. It should not be surprising, however, given that the bloodwork right before the infusion, after three weeks of rest from the last one, showed a very low red blood cell count, hemoglobin, and hematocrit. This will take a while to recover from.
But I anticipate that I will. On a rather predictable schedule. In fact, emotionally, I feel fantastic. Relief is in sight. This is not the case for my friend. There is a big difference between acute fatigue and chronic fatigue. My friend has good days (40% energy level) and bad days (unable to move), and is not able to predict which it will be. What used to be called Chronic Fatigue Syndrome is now called Myalgic Encephalomyelitis.
ME/CFS is a complex and debilitating multi-system, chronic disease with a serious impact on one’s quality of life. The phrase “millions missing” is connected to ME because millions of people have it but have no energy to advocate for themselves. Did you know that ME is more prevalent than multiple sclerosis, cerebral palsy, and muscular dystrophy combined? Yet the cause is unknown. There is no diagnostic test. And there is no treatment. Why? Because very little research is being done. If you ever thought of donating to breast cancer research because of me, please don’t. Breast cancer is a well-funded, well-researched disease. Please consider donating to the organization that supports research on ME/CFS instead: https://solvecfs.org/