This book was especially poignant to me, please let me know if you can figure out why? Listening to the audiobook I actually cried. I hope it affects you the same way. Available through my website here.
On Monday I’d had enough. I called Madison and told them it was cruel to keep me waiting ANYmore as Tuesday meant fourteen days since my surgery with their damned biopsy. I made calls to Madison, to Wausau, and all I got were, “We’ll pass on your message and get back to you” back. How frustrating!
Then, in the afternoon the surgeon called me. Now this chick who looks to be about 26 and drilled into my brain, she sounds even younger. She was in a good mood as she told me the news that the mass was benign. There was a caveat though.
Your body has finite rules on some types of illness. Certain things cannot be in certain areas. That is why the results of my tests took longer, they didn’t make sense. I have a mass, and the type of tumor where it has no business being. The doctor assured me, they had NEVER heard of something like this. She said she KNEW I was unusual, we both laughed at this, but even this, this was odd. I have what is called a Schwannoma.
Schwannoma is a rare type of tumor that forms in the nervous system. Schwannoma grows from cells called Schwann cells. Schwann cells protect and support the nerve cells of the nervous system. Schwannoma tumors are often benign, which means they are not cancer. But, in rare cases, they can become cancerous.
When I heard the word Schwann’s, I pictured that company here in the USA that delivers food and has a swan as it’s logo. My sense of humor won’t let that one go.
Now, these schwannomas do NOT form in the brain…EVER. As a result, they are, from a scientific point of view, VERY interested in this one. So, we are going to keep a watch on it. For the first year I have to have an MRI every three months and then next year every six, and then maybe once a year. I’m fine with that. She rated it on a scale of 1-4 (4 being its worst) a 1 and it really sounds interesting from my curious mind. We will just see if it grows or presses on anything.
So that begs the question, how is it in my brain and where did it come from? The doctor says she believes a few cells were misplaced into my brain when I was forming as a baby inside my mother’s womb. They lay there dormant almost my whole life. They were probably not seen in the open MRIs I have had in the past and as no one was looking for a mass in my brain, not even looked for. These couple of cells that had formed into the mass would not have been discovered if I hadn’t had a reaction to the third vaccine for Covid that I had in December. That reaction led to an MRI that showed the mass, which triggered all of this. Happy 2022.
Once the after-effects of the surgery and the meds wear off, I hope to return to a type of normal I miss, writing again. Fortunately I can stop taking the anti-seizure meds as it’s been two weeks and I’ve had no seizures. Good, no more dizziness or wonky feelings. I’m still on antibiotics for the infections. Tomorrow I get the staples out, YAY.
Now, onto the science and art of living. And, she lived happily ever after.
I really don’t know how to start this blog. However, it’s going to be long, I may ramble a bit, so please hang in there and enjoy the tale.
As you know in my previous blogs, I’ve been releasing a lot of Spanish books. For those who didn’t read my blog’s warning about all the releases, you will have to bear with me over the next few days where even more will be released. I got a lot of friggin’ work done and I’m proud of it, so each and every short story, novella, and novel I got out, get’s a blog of its own, announcing its release. More to come, because I’m working again. By the way, this will happen again as I’ve signed contracts in Portuguese and Italian for many of these same stories. Each and every one will get its own release announcement. Ignore them if you don’t read that language, I’ll still be announcing them. But, that’s for later this year.
That isn’t what this blog is about though. I know that my friends and fans who read this, are hoping for news about the mass in my brain. I had to wait over two weeks from the surgeon in Wausau telling me about it to get this appointment. There were delays because we wanted the scans from last week for this ‘best surgeon in the country’ to see. There was a lot going on in that time because insurance was involved and people kept trying to cancel the appointment for the scans. I fought very hard to keep those appointments because I KNEW we NEEDED them for the brain surgeon’s appointment yesterday. They were VERY important, or so I was led to believe. Here is what happened yesterday.
I live outside Wausau in a relatively small village. To me, it’s the gateway to the Big Woods of Wisconsin. Lots of lakes and trees and the Big Woods was made famous by Laura Ingalls Wilder and her descriptions of it in her book by the same name. It’s a beautiful place to live.
However, it is a small-town mentality, and dealing with it sometimes is not easy. After my initial prognosis and fighting to get the scans, I was told that they wanted me to go to the University of Wisconsin in Madison to see ‘the best surgeon in the country’, the surgeon that my neuro-surgeon in Wausau would see if he had the same condition as I did. Impressive, right? Madison is a two-and-a-half-hour drive from my village. I usually don’t mind these kinds of drives but in the last couple of years of inactivity due to the pandemic I am finding my body has aged, my aches and pains are worse, and I’m not so inclined to take such trips. Still, I had to go to find out what this surgeon recommended. I did ask, a couple of times, what this appointment was about, was it a full exam that the surgeon HAD to meet me, or was it a meeting that could have been taken care of with zoom? The nurses and insurance people I spoke with did NOT know.
It wasn’t until the day before (Sunday) I started getting a bit nervous, after all, I’d seen the MRI scan that showed the mass in my brain. What some of you do not know is that my mother died of a brain mass, 21 years ago. Seeing her lose her mind, both literally and figuratively haunts me to this day. I have a lot of regrets about that time in my life. And, to return from her funeral that January with pneumonia myself and my son with bronchitis, compounded the whole situation. Then, four months later I found out I had cancer, lymphoma. 2001 was NOT my year.
I gassed up my little SUV and it cost me $45.00. Gas prices are high right now and I get that, but I had planned for this. Money is also tight for me right now and budgeting these things is something I have no choice but to do. I set out nearly three hours before my appointment because of possible delays. I am not familiar with the city of Madison and knew I’d have to rely on Google maps to direct me. Now, those of you who know me, know I have a love/hate relationship with GPS. It does NOT like me and more often than not has gotten me lost. Fortunately, today, it directed me to the University of Wisconsin Health Center with only one hiccup…it made me drive across the whole friggin’ town, on town roads instead of the most direct route on a highway to save time. Every bump on the local roads, every pothole, every street light. I didn’t mind except that whole long drive, all you have time for is to think, long thoughts that might not be conducive to good things. But, it got me there, so I was grateful.
Let me tell you, it is impressive. The university, the whole medical center, it goes on, and on, and ON! It’s HUGE! Then, trying to park, what a busy place. I expected it, but being a hermit, it could have been quite overwhelming, it sort of was. Then I got the first parking spot (a psychological bonus) and went in. They would not allow me to wear my cloth mask. Okaaaay, they gave me a surgical mask which I gladly put on to keep them happy and everyone safe. I’ve been a big mask proponent from day one of all of this. They were very kind and directed me to the neurology department. It reminded me of a garden, modern, but not too modern and friendly. But damn, people were zipping about and so many of them. It wasn’t crowded but it was non-stop. I was early and expected to wait a while. My phone and reading the news was thwarted by whatever they had set up in the hospital. Amazingly, I didn’t wait long and the time was filled by filling out a weird little questionnaire that wasn’t very impressive or professional. Okay, it’s their place of business, I’m just visiting and I’ll do what I’m told. They show me into an exam room.
The nurse goes to take my weight, my blood pressure, and I politely ask that she do that by hand because I always get hurt by the pressure cuff. I have big arms, from the days where I used to work out, and all that has turned to fat and it hurts when they use an automated machine to take the pressure. She didn’t really show it, but I could tell she was annoyed by the request. However, another nurse told me a while back that this request was not unusual and if it’s my preference to always ask for it, so I did. This nurse hurt me with her overinflation of the cuff, what I was trying to avoid with the automated one. Ah well, maybe it was an accident. She took some basics and then left me alone. And alone. And alone.
I started texting a friend, since that was the only thing that worked on my phone. Letting her know what was going on. After nearly an hour though, my patience was wearing thin. Now, some will tell you I am NOT a patient person, I’m one of them that will tell you that. However, in my defense, it depends on what the something is that I’m having to be patient about. Leaving me in an examination room, no magazines, no word on how long the doctor will be, no nothing, is about respect. Furthermore, there was some type of machinery in the next room that sounded like an oxygen pump going off continually, and it was loud. Then, the fluorescent light above me in the room started flickering. Guess what I was focusing on, the noise and the light. Twenty minutes and they should come and tell you, hey, we haven’t forgotten about you, but we are aware that your time is valuable and will be with you as soon as possible. That is respect. That is acknowledging that your time is just as important as theirs. At forty minutes, I’m starting to fume a bit, I’m thinking of leaving but my friend points out that I’d be spiting myself, since I fought so hard to get to this point, drove so long, etc. Good point. However, I didn’t say I’d leave the building, but I was thinking I would seek out someone as to why I was being treated like this?
It was nearly an hour before a nurse came in. I let her know in no uncertain terms how I felt about being kept waiting for nearly that hour. Now, this isn’t my first rodeo about this type of disrespect and they always come up with, well, we have other patients, blah, blah, blah. I am not stupid. I’m fully aware of the fact that there are other patients and I expect to get my doctor’s full attention for the time I am with them too. I expect they too expect to be treated with respect. Leaving me in that room for that amount of time without a heads up as to what is going on is not respectful. I let her know that. For some reason, she jumped to the conclusion that I wanted to cancel my appointment right then and there and leave. No, that was not what I was saying at all. I calmed a bit and we both ignored the rude way they had treated me and went over their lame questionnaire, her asking me to fill in the blanks on my medical records that they had.
Since 2001 I have been very well aware of the mistakes that can be made in a medical office. The gaps here though, in 2022 in a facility such as this, were unacceptable. I had non-Hodgkins lymphoma in 2001. I took an experimental treatment with Stanford. All of this I have blogged about before and you can look it up in the search bar above. I won’t repeat it all here, now. However, they had down on their medical records that I had both Hodgkins Lymphoma, and non-Hodgkins. There were other things that were wrong as well. The nurse had no problem deleting some of the information but it made me think, how easy it is to delete information off my medical records. This could be good and bad. Something I asked her to put on there was that at no time was I EVER to be given narcotics, especially in the form of anesthesia. I always react badly to this, and have told every medical person I come in contact with, because they friggin’ DON’T listen and I’ve been given this crap, only to be sick for days and weeks afterwards with projectile vomiting. No kidding. Gross, and you probably didn’t want to know about this, but it’s important. There are alternatives to putting narcotics in anesthesia. Some doctors are lazy and don’t want to research what they are though and narcotics are the easiest way to put a patient out. I’ve experienced this before and suffered as a result.
By the way, those scans I had fought so hard to have done, so this surgeon would have the complete picture, hadn’t even made their way down into their system here in Madison. Only the notes someone had compiled who had read the scans! Wow, sure glad I made such an effort (this is sarcasm).
The surgeon I was expecting first of all I had been led to believe was a man. In walked a nice woman who introduced herself as my surgeon. I was confused, but trying to go with the flow. My first impressions about this place and the wait had not put me in an especially good mood. I thought perhaps I should just calm down and see what was going on. The nurse started repeating the information to the doctor, going over everything we had just gone over, and getting it WRONG! Good thing I was there to correct her but at the same time, I felt my input was not appreciated. Um, hello, it’s my medical care and it’s important to me! I realize they see hundreds of patients but if you don’t advocate for your own health, your own well-being, then these people are going to make mistakes. I’d already seen several of them. After going over part of the information the nurse suddenly and abruptly left me alone with the surgeon.
Now, this surgeon, while she seemed like a nice person, was mumbling and that bothered me as I have to understand what she is going to do. She didn’t do anything at this meeting. I was getting the same meeting I’d had back in Wausau with the neurosurgeon there, but now 2.5 hours away in Madison. What a friggin’ waste of my time and energies. She told me she wanted to do a biopsy of the mass. I’d already been told this. She is a surgeon; she’s going to want to operate. That’s what they do, don’t they? She told me that they needed another MRI. She’d been told I didn’t do closed MRIs because of my wide shoulders, and because it hurts. She seemed to take pleasure out of informing me that she needed a closed MRI despite the fact that she knew it would hurt me. Seriously? She did explain that a closed MRI would give her a better scan, a better map of my brain. That an open MRI ‘fills in the gaps and those gaps are blurry. Okay, that’s logical. Still, I couldn’t forget the pleasure she got at the idea this was going to cause me pain. She also insisted it had to in Madison instead of having one that was convenient to my home. Hell, the open MRI is literally 1.5 miles from my home, I could walk (except for the temperatures this time of year).
I pointed out that it was a long drive down here and asked after the surgery would I be able to drive myself home? She asked if I had driven myself here to this appointment and, startled, I replied I had. This seemed to bother her for some reason. No one has told me at this point I can’t drive. She became condescending a little and said that social services would arrange for a social worker to help me. That they would arrange for me to be driven to and from the surgery. I bristled at her tone and the words social worker, as though I was too inept to make my own decisions. Her tone further bothered me, and her mumbling. She also jumped on the fact that I’d had lymphoma in the past and seemed to think that this was a reoccurrence, causing the mass. I am skeptical, after twenty-one years? I don’t think so. My confidence in this ‘surgeon’ was not there, at all.
She left me as I couldn’t think of more questions. I did know and told her that I would think up more on my way home. She said I could call her office. I pointed out it wasn’t easy to get through to her office and she smiled and left, telling me her nurse would be back to schedule the MRI appointment and the surgery. I waited, and I waited, and I waited…AGAIN! After the way I had already been treated, disrespected even, I walked out. Enough already.
I called the other neurosurgeon’s office once I got back to my SUV. It was already late in the day and all I got was a phone nightmare of press one for this and two for that. I finally got someone on the phone who took my message, asking the name of the surgeon I was referred to. I didn’t tell them on the phone but I felt the original surgeon I had been told I’d be seeing, had been switched. I was promised the A-Team and got the B-Team instead. I wasn’t important enough for them to give me the best. The woman on the phone informed me there was nothing in my records indicating WHO I had been referred to! WHAT? Apparently, it just said UW Health, not the name of the neurosurgeon who they told me was the best in the country. WTH?
On my way out of town, I stopped at a couple of stores we do not have up here in the Northwoods. The GPS got me there no problem. It was as I was trying to leave town for home that the familiar GPS problem arose. This exact same problem had happened one other time in leaving Madison. For some reason, the GPS instead of sending me slightly east and then north, wants to send me west. I caught the error within twelve miles and turned around, the GPS was NOT happy. I turned it off and used dead reckoning and my own innate good sense to counter it wanting me to go a helluva long way out of my way to get home. I took highways to the interstate to head home. Not even halfway I realized I needed to stop, not only for a bathroom break, but to gas up again, and to get some dinner. I was becoming sleepy and it was already dark, not a good combination and I had over 100 miles to go yet.
Unfortunately, I took the wrong off-ramp from the interstate and got lost in a town, unable to find my way back to the interstate. I wandered around for quite a while until I found the road I had originally thought I was getting off on, stopped for gas (another $31), bathroom, and then went across the street for dinner. I sat in the parking lot to eat part of it, take some caffeine intake (soda, which I have to limit with my stomach), and to further contemplate what had happened to me. I have to admit, I’m in shock at the appalling way I have been treated. I did not finish my dinner, but found my way back onto the interstate.
That amount of time is a lot of time to think, alone in an SUV with nothing to distract you. Yes, I’m concentrating on my driving, because, you know, deer in Wisconsin are those big white-tailed deer who have a tendency to want to get hit on the interstate. BUT, a lot had happened to me in the last few weeks including the death of friends…as I wrote in a previous blog my friend Carrie had died. I was passing her hometown on my travels and couldn’t help but think of that and her. Thirty-eight years is a long time to know someone. I do miss a lot about her and the fact I can’t call her and talk to her. A lot of regrets there.
So, this is my tale of waiting on this much-anticipated appointment. They built it up as so important, so vital to my care, that I thought I have to get down to Madison for this. Come hell or high water, I had to see this surgeon. What a letdown. It will be interesting to see the fallout in the coming days from this. I’m incredulous at these behaviors and will not put up with being disrespected like this.
Like why did I have to pay over $70 in gas to get there for an appointment that could have been taken care of, realistically, by zoom? Why waste five hours of my driving time for this? Another hour in the exam room to be only partly listened to? For this, I showered? Shaved? Put on a bra? Really??
I wasn’t supposed to see my 35th birthday. I’ve been reflecting on that a lot lately. As many of you know I’m a cancer survivor. In 2001 at the relatively young age of 34, I was given 4-5 months to live. That was 6-7 months BEFORE my birthday. I’ve written about that here in my blog several times (if you want to read it, use the little box on the left and type in cancer). It’s weird though, I went out that year on my birthday with my sis-in-law and a good friend from college to celebrate and reflect. I’m not in contact with either of them anymore and have moved on, weird how that goes.
This year, after twenty years, I celebrate that I’m still here. None of my books would have been written or published if I hadn’t made it. Heck, I didn’t write my first one for another year after all that! I didn’t meet my first g/f until halfway through the two weeks it took me in January 2003 to write SHIPS. It’s amazing when I reflect back on all the gifts I have gotten since that time. 120 Novels, Novellas, and Shorts written and published, in various versions including e-books, print, and now almost all of them in audio. I started a publishing company ten years ago and have published over 200 books for my various authors. I started the awards companies to celebrate lesbian fiction and gay fiction. I have a reason to be proud of myself.
There have been many challenges in the last 20 years including neck surgery, chemotherapy, radiation therapy, chemo-brain, a broken leg, a permanently sprained back, shoulder surgery, covid-19, fog brain, and a few other things I’m certain I have forgotten.
I am so happy that I met so many wonderful people on social media. Some, who I have never met in person, have become some of my best friends. Someday we will meet, even if you are across a vast ocean.
Thank you for following along on this blog, reading my books, and sharing in my adventures. I am hoping, in the next year, to have a lot more of books and adventures! Follow along!
Twenty years ago today I lost my best friend to brain cancer. She was kind, supportive, loving and a second parent to my sons who I was raising alone. She’d survived marriage to a man who didn’t know how to love another person besides himself and was mentally abusive. She’d survived thyroid and colon cancer. She was one of the classiest women I had ever known and if I become half the woman she was, I’ll be proud of myself. I miss my mother still on this 20th anniversary of her death. I miss the daily phone calls to just catch up on each other’s day. I miss how proud she was of my achievements. The pain never quite goes away when you lose a beloved parent. I will always love my mother and miss her.
About a year ago I made a decision that was supposed to change my life. My weight had gotten out of control and I recalled my father being very unhealthily heavy for many years. I also had other relatives I didn’t want to look like in regards to that. In the course of four years I’d gained something like sixty pounds. Now, being heavy alone isn’t unhealthy, depending on many factors including your metabolism, your eating habits, genetics, and your bone size. I’m one of the lucky ones that I actually do have large bones. The doctors have explained that because I do, that’s where a lot of my weight comes from. You cannot tell how much I actually weigh since a lot of it is the large bones. Believe me, having a football player’s shoulders, or a man’s sized hands, isn’t always fun, especially for an effeminate woman. However, the extra pounds on those bones and my joints was what was causing me to make a decision to change all that.
As many of you may know I’m a cancer survivor. I’ve mentioned that in this blog many times, you can read the first mention here. Due to the aggressive chemotherapy and the radiation treatment I took, I will forever have aches and pains that normal aging wouldn’t give me. Oh, I’ll get those too, but some of the weird pains are a direct result of those poisons I took in order to survive.
So, I decided to get my stomach surgically altered in order to lose weight. I began by taking classes where they told about what would be done, had others who had gone through it, and still others who were going through it in various stages. Now, according to my insurance, I had to go through three months of this. I followed directions, despite not being a joiner and these meetings drove me crazy. I don’t like those ‘fun’ games people do at baby showers, or bachelorette parties, and I guess I’m just a party pooper for the stupid games that I don’t find fun in the least. They are usually embarrassing. I felt the same way at these meetings when they wanted to include you. Please, let me just be anonymous. I don’t want to stand up and be like, “Hi I’m K’Anne and I eat too much. I don’t exercise enough, blah, blah, blah.” They don’t actually make you do that, but that’s how it feels! Heck, I even hated the word they used, bariatric!
After the three meetings you have to get a psyche evaluation. I laugh at this. Anyone can pass a psyche evaluation, even if I were crazy! You can tell them what they want to hear, follow the protocol and use their own answers against them, etc. However, I was just being me (not always a good thing) and told them like it was. I was impatient to get the surgery and move on, I had plans! I felt the meetings were a waste of time and that these delays were annoying. In the end, I understand why they make you go through all these hoops for this life-altering decision. You have to be ready for the changes, able to cope, and yes, I could probably have done it, but didn’t, deep down, want to.
After the psyche evaluation, which I passed (I know, many of you might be surprised), I had to go see a nutritionist. For three months. She required me to keep a journal. I can’t tell you how much I HATE to keep a journal about ANYthing. It always feels like someone is going to use my own words like that, real words, honest words, personal words (nothing like my fiction) against me. Not only that, but then she decided I needed another month, was not at our scheduled meeting due to her illness (ironic, right?) and I had to have a zoom meeting with another nutritionist who didn’t know me, didn’t read the journals (I could tell) AND I totally could have snowed with my ‘tell her what she wants to hear’ BS. I didn’t, but I COULD have. It was all so pointless and I think it’s how they bilk the insurance for their outrageous fees.
So, they tell me now they are waiting to hear from my insurance company to see if I’m allowed to have the surgery. Allowed? After all this you are talking about if I’m allowed? I remember thinking, get ON with it already! I had thought I’d have had the surgery in January, and if so, then I could have the summer I had planned! I was going to GCLS (Golden Crown Literary Society) and I was already scheduled to be on three panels which I was genuinely looking forward to. I was also going to Canada with my then girlfriend and we were going to do the Lake Superior Circle Tour. I’d bought all the rock-hounding equipment I’d wanted for a while, and was ready and waiting! We planned on Lake Superior for agates, amethysts, and a little-known glow in purple light stone called a Youper! If we were even luckier, we’d find Petoskey stones and who knew what else?
I get a call from the surgeon’s office. I need to get a health check (which I’d also had in February) from my general practitioner. I’m like, doesn’t the one I’d had in February count? (I have to have one every year for blood work because the radiation therapy ruined my thyroid and I take meds for that). She said, I don’t know, let me check. Took two weeks to get back to me to say, no, you have to have a new one so we know it’s safe for the surgery. I called my general practitioner’s office to get the health check. They are like, we don’t do these health checks until your surgery is scheduled. Um, catch 22? I couldn’t have the health check without the surgery scheduled but they won’t schedule the surgery without the health check? Grrrr. I call back the surgeon’s office and they take SIX WEEKS to straighten THAT out.
Then, after all this time, it would have been nine months since start until surgery! I was impatient. I knew that the Canadian trip was not going to happen if I had the surgery in June. I’d already been told by the doctors to cancel the GCLS trip since I’d be healing and unable to travel at that time in July. Sigh. Letting down a few people. I’d really wanted to see some people I only see at these events, friends that I only communicate on Facebook or Twitter as well as fans.
By the time they got back to me, I was getting pissed. I mean, really, SIX WEEKS? C’mon, that’s unprofessional and my calls to them going unanswered? I started emailing. At this point I’m fed up after all these months of jumping through ALL their hoops. I’d dotted all the I’s and crossed all the T’s. But they couldn’t behave in a professional manner and I was to entrust my life, my physical well-being to these incompetents? I was done. I told them, no, I didn’t want the surgery because I couldn’t TRUST them!
Meanwhile, Covid 19 had come on the scene since February and that was an additional worry. They didn’t know enough about it and having major surgery really wasn’t a good idea. So, because I was certain the diet wouldn’t work for me, the changes in my habits, etc, I was relieved to have said no. My girlfriend at the time I could tell was disappointed, but hey, love me as I am, and she did…however, she wanted me happy and healthier.
Fast forward to the end of summer and beginning of fall. I’m seeing a therapist for my back because the pain has gotten very bad and I’m considering another life change. One of the therapists listens to my story about the gastro-bypass surgery I had been considering. He told me he was relieved I hadn’t done it. Due to the fact that I’d had cancer, chemotherapy, and radiation I had a compromised system. The by-pass would probably have killed me in about six years! Holy cow! He explained to me a few other things, things I could eat that would help me lose the weight, still give me the nutrients I would need, and keep me healthy. Wow, one decision and all this! Amazing.
He further told me that yes, I’m overweight, which we will work on, but I hadn’t lost the muscle mass. I’m a big woman, always been stronger than most women, and, a few men, and the muscle is still there. I just have to use it, or get back to using it. It was such a relief to know that. I didn’t even feel awkward, talking to a man my age, in my bathing suit, in a pool over all these concerns. Btw, they made me wear a mask, in the pool, to stay healthy with ‘social distancing’. It was weird, because when the cloth mask got wet, I felt like I was smothering!
I write this not only to remember what had happened, but because not all life-altering decisions have to be made. Even though my process took nine months and I would have regretted it if it had been the four months I thought it was originally going to be, I would have regretted more that I only got six more years to live my life!
I have been lucky that it’s been nineteen and a half years since I was told I had cancer. That I had a ‘mere’ 4-5 months to live, and I’m still here. None of my books would have been written if I hadn’t stuck around. I’m still accomplishing things that I want to take on. I’m still a viable member of humankind. Who knows what I’ll do next? Who knows what I will accomplish next? How much I could contribute in the next thirty or so years? I hope to be looking back at this blog and still sharing with all who read this. I hope you are around, healthy and happy and functioning, pain-free to read these and my books and see what I accomplish.
I don’t know why this date always sticks out, because I don’t recall the exact day I found out I had cancer. However, I do remember it was April, I’d just come back from an expo with my sons, my mother had died of brain cancer in January, I was selling my house in Southern California, I was finishing up my lengthy divorce that had taken over six years, and I was very, very sick. I couldn’t breathe. It was a Wednesday when I got in to see the doctor. On Thursday I had x-rays, on Friday I went in for a biopsy…I was awake for the surgery where they removed the lymph nodes in my neck…it was gross because I could see the entire procedure on the shiny light above me, I couldn’t move from the anesthetic paralysis they had put me in, but they wanted me to talk to them, you know, in case they hit my vocal chords?
I’d been sick for a year, I knew it, as a woman, as a mother, and as someone who feels things very intrinsically. I ignored it. Why? I was trying to raise two boys. They were, when I found out my prognosis, aged twelve and ten. I was also trying to run two businesses, one of them internationally and it was growing exponentially. I was also trying to maintain two households. I had a house in Huntington Beach, CA and another that I was renting in Los Osos, CA. Then, my mother started behaving oddly. She was living in our house in Huntington Beach and I was ‘home’ for the weekend. I remember the first sign vividly in October of 2000 as it still hurts, even though she didn’t mean it, and it was so out of character for her.
We were watching some TV and a commercial came on about abuse. A woman of about forty was yelling. You would assume by what she was yelling that she was saying it to kids, abusing them. Then the camera panned out to show a little old lady, practically cringing away from yelling woman. I was horrified. I turned to my mother and told her how much that commercial upset me. Not that it was okay if it was children she was yelling at, neither was it okay to yell at a defenseless older woman. My mother looked at me almost blankly for a moment and said, “Well, what do you think you do to me?” I stared at her in the same horror that I had felt at seeing that commercial. I gasped. I also defended myself. I said, “I would never speak to you in that manner!” She had raised me correctly and she knew I would NEVER raise my voice to her. She subsided after that. I, however, realized something was wrong. My wonderful, kind, and patient mother was behaving irrationally, that was the ‘first’ incident that I was aware of.
In November of that year, I bought another house, this time in Los Osos, CA, across the bay from Morro Bay, CA, so we could all live under one roof again. It had to have a fenced in yard since we had two dogs, five cats, two growing boys, and my mother and I, as well as near enough to my warehouse in Morro Bay. We were all elated as I signed the paperwork. I had told no one as I didn’t want to jinx it until it was complete, good thing too as a week after I signed the seller changed their mind. I felt horrible as my mother was so excited about us living together again. She adored her grandchildren which she had helped me raise once I became a single parent. I firmly believe that with her help they turned into better human beings than they would have it I had been completely alone for those years.
At Thanksgiving, I arranged to have someone else cook our dinner, I was too busy with work and picked it up. We really enjoyed the meal and my mother was behaving oddly. I kept asking her if she was okay the whole weekend before I had to get back to my other home and work up in Morro Bay. It was a four-hour drive.
My mother knew my 1-800 number (it’s a free number to call businesses to those of you who don’t have that in your country) by heart and called me at least once a day, or I called her to check in. A week or so before Christmas I couldn’t reach her. I tried for days. I had the police go do a ‘wellness’ check where they go pound on the door and ask the occupant if they are ‘okay.’ There was no response. I finished up my Christmas rush of orders as fast as I could and headed down as soon as the boys were out of school for the day. No one answered the door, my key worked, but the door was bolted. I could, however, hear the dogs barking. I had to lift my boys, one by one, over the back fence. My biggest worry was that she had died in the house and they would find her, there was nothing I could do. They went through the dogie door. I went around to the front of our town home and they let me in. My mother was sitting on the couch and was like, “Hi there!” I was not amused, but I was relieved.
Fortunately, across the common area of our townhome complex lived my friend Jill. She had been a nurse for years and I went to see her after we visited for a while at mom’s. I asked her what I should do and she recommended I take my mother to the E.R. and tell them about her altered state, just as I had told her. With that course in mind I went home and asked my mother when was the last time she had bathed. Clearly, she could no longer take care of herself and this altered state of mind worried me. Was she taking her meds? Was she feeding the dogs? I had regular orders of groceries delivered, part of our phone calls so I could just arrange that all the time. Everything ‘seemed’ fine but I knew something was wrong. She asked me if she stank, I assured her that she didn’t, but wondered if a bath would make her ‘feel’ better. It did. We had a delightful evening together, just like always. The next morning, I took her to the E.R., she would never return home.
Getting her to the hospital alone was a nightmare. I had one of those extended vans and she couldn’t get up in it. I tried to lift her, but as we were about equal in weight and height, that didn’t work. Then, her colostomy bag broke and we had to clean her up. It took two HOURS to get her out the door and to the E.R. which was about ten minutes away. I felt so bad as though I had failed her as a daughter. I hadn’t, but I felt that way.
They kept her because based on my description of her behavior, they ran a scan and found a brain-tumor. The doctor was eager to operate. I could imagine my mother’s horror at the idea. She was a very conscientious and particular person…about the way things should and shouldn’t be done. She was very classy, very dignified. She’d already survived thyroid and colon cancer, she would not want her head shaved and them digging into her brain. The tumor had metastasized already but not from her other two cancers. I have a theory that when she went in for her regular checkup in June, that they found out about the tumor, and she chose not to tell me. She chose to let it go. I decided then and there, knowing my mother, that she wouldn’t want the brief amount of time the doctors would have given her with such a surgery. She would want to go on, she was tired of fighting, she was tired of living, she would want to die with dignity. We’d talked extensively over the years about her two cancers, her three strokes, and I knew her well enough to know what she would want and the decisions she would make if she could. I refused to allow the surgery. I told my mother who was lucid, but had short-term memory loss, my decision. I wasn’t sure she was nodding because she trusted me or because she agreed with me. After telling her three times that weekend that she was dying of a brain tumor, I was done, I wouldn’t tell her anymore. It hurt too much. This was Saturday when I admitted her, by Monday she was in a coma. They said she would never awaken again and probably be dead by Thursday. This was right before Christmas 2000.
My mother not only woke up again, she recognized me, my boys, and my brother when he visited. Nothing like making a liar out of the doctors. During the last days, she had a stroke. She always thought she would die of a stroke since her mother had, so when she tried to ask me what was wrong with her and I couldn’t tell her again that she was dying of a brain tumor, I told her she’d had a stroke. THAT she could understand and comprehend and it seemed to give her comfort. She even tried, during the last days, to comfort me when I was crying about her dying. She told me I would be okay, patting me on the stomach. She was right, I would be okay. When she slipped back into her coma a few days later, I told her to go on, don’t hang around for me, I would be fine, she raised a strong woman, and I loved her. She died the next day on January 4, 2001.
Four months later in April I was dealing with my own prognosis and possible death. It was terrifying for my two boys. I tell you, if they didn’t exist, I probably would not have fought so hard. The doctor told me if I did nothing that I would live maybe 4-5 months…and it wouldn’t be a very pleasant death, choking to death. I became a human guinea pig.
You might wonder why I tell all this, part of it is to remember because I need to, to exorcise it from my psyche. Part of it is to tell others that no matter how bad things are, you can do it, you can deal with it. I write about strong women in my books because I am a strong woman, my mother was a strong woman, my grandmother was a strong woman, my great-grandmother was one too…so I come from a long line of strong women and that is what I know and write about. Here’s a bit of trivia, I am the youngest daughter, of the youngest daughter, of the youngest daughter, of the youngest daughter…how is that for a legacy? I have no daughters, lol
No matter what you go through, what you may go through, you can do it…I firmly believe that the fates, that a higher power, God if you believe, doesn’t give you ANYthing that you can’t handle. So, celebrate with me that it’s been SIXTEEN years since that long-ago prognosis. I’m here, I’m still publishing stories that I hope you all enjoy, AND there is more to come.
AND, as always, check out my website to look at all my amazing books! (Click on the picture to be taken to the site)
This is the time of year where I reflect on the fact that I am a Cancer Survivor. I tell you this, not to get sympathy or pity, but to, I hope, give people hope. I was given four or five months to live. Today, I celebrate fifteen years of survival. It hasn’t been a bed of roses, life never is, however, for those of you who have gone through it, you understand. For those of you who are going through it, it can have a good outcome. For those of you who might face it, don’t give up, there is always hope.
Something people don’t know is that four months before my own prognosis of Lymphoma, my mother died of brain cancer. This wonderful, classy, and supportive woman had survived thyroid cancer and colon cancer. She wasn’t able to beat the brain cancer. None of these were related to the other, that is, they didn’t metastasize and move on to another part of her body. She SURVIVED the two bouts clear and free…she made it to the five year mark each time. My mother was my best friend. She helped me raise my sons and influenced the men that they became. I am the youngest of five children and she raised us all to be survivors.
I am a survivor. I am here FIFTEEN years later after my death sentence, after having gone through the most horrible treatment, an experiment. Essentially I took twelve months of chemotherapy in twelve WEEKS. At the time I took the treatment it was an experimental treatment, it wasn’t out on the market for everyone to try. I have since found out that it now a standard for cancer treatments. I don’t recommend it to just anyone, it’s horrible, I won’t kid you. Throwing up as you sit on the throne, your insides coming outside from both ends is never attractive. It did however stop my tumors from growing.
I was told I had tumors on both side of my neck. The biopsy they did on the right side has left a scar in the crease of my neck…not too visible unless you are looking for it. They decided instead of just a biopsy to remove all the lymph nodes that day. I saw each moment of it as I wasn’t completely under and could see in the shiny reflection of the metals of the light above me. I could also feel the tugging as they pulled them out. It was gross. I also had a four-inch tumor over my heart and lungs. I also had one under my under arm. The chemotherapy stopped the growth. Fortunately for me I only had lymphoma in the upper part of my body, had it been throughout the prognosis would have been even more dire.
I chose the Stanford Five Protocol because I really had no other choice. Had I done nothing I would have choked to death. At a mere thirty-four years of age, with two children aged ten and twelve who had just lost their other parent, this did not appeal.
So today I celebrate with anyone who has beaten the odds. Anyone who has gone through it, is going through it, or will go through it. There is hope. I’m convinced there is a cure (that’s a blog for another day about the pharmaceutical’s companies greed to keep us patients vs being cured). So today I am a survivor!
I touch on it a little in my book Germanic, not exactly mind you, fictionalized of course. I take real life experiences and put them into my books. I hope you can relate and enjoy them. I usually write about strong women who survive whatever life drama that is sent their way. Whether you like or love my books, I hope they give you a story that stays with you.
Today, I am a SURVIVOR!
Original Post about what I went through.
I’m not fond of doctors. I don’t hold them in ethereal awe as all-knowing. Instead, I think of them as a necessary annoyance. You might ask why and I’ll tell you it is probably because I’ve had more poking and prodding than the average person should.
You see 14.5 years ago I was given a death sentence and while it was ‘only’ four to five months that I was to live, I chose instead to become a human guinea pig. (BLOG) As a result, I obviously survived.
Here’s the thing though when you survive. They want to know WHY. As a result they want you to come in at least once a month for that first year, twice a year after that, until finally it’s a health check once year. I’m not the most patient of people and I didn’t go in for years. As I get older though and other health concerns come up, I go in a little more frequently.
This last summer I had pneumonia. In fact, those of you who met me in New Orleans for the Golden Crown Literary Society conference may not have known it but I was sick…very sick. I hid it quite well, had a good time, but there is much about that conference I simply do not remember due to the way I was feeling. When I got back from the trip I went directly to the hospital, I had the car rental guy drop me off there! Walking pneumonia turned to viral pneumonia and that hung on for eight weeks! The doctor called for a follow up visit a couple of weeks ago because pneumonia is one of those things that can come back easily. So I went in on a Thursday in October for a chest x-ray. They called me on Friday because there was an area of concern that they had seen over the summer that seemed to be worse and they wanted an MRI. That MRI was Monday. As I left, the technician said we will let you know in 5-7 days. Well, anyone who knows me knows that I’m NOT going to wait that long for any test results. I went across the medical center to my doctor’s office and asked if there was anything they could do ‘hurry this along,’ as it were. I said the things going through my brain (yes I am imaginative) would be more damaging than anything physical they could do. The doctor called two days later.
When you have a mass the size I did over my heart/lung (mine was four inches across) and they shrink it, the body has to fill that empty space. As a result, calcium can fill it in. Well this calcium was cause for concern. Apparently she believed I ‘may’ have a two inch tumor in my heart (or so she said at first) in my aortic arch (whatever that is). Looking such things up in Web MD, I do NOT recommend. You will only find yourself ‘sicker’ than you believe with all that helpful information. My doctor, who is one of the most thorough women you ever want to meet, was meeting with the x-ray people and others because they thought this two inch (whatever) was growing. Only they thought it was in my lung, over the heart. Well, I can be blunt and I called bullshit. You know, knowledgeable and educated people of that caliber tend to be taken aback when you challenge them. I’m challenging enough but I’m also educated and knowing about what has happened to me. They wanted to wait three months to ‘see’ if it grew more, as we had from this last summer. I happened to know that lung cancer is one of the fastest growing cancers there is and I wasn’t going to sit back and wait. I told her so too. I also challenged why all the other MRI’s and chest x-rays weren’t available for comparison.
Here’s the thing. Where I live here in the Northwood’s, they have two health systems. Apparently they don’t share information…unless you ask. My doctor, while extremely competent, didn’t have all the information she needed to do the comparison. I was convinced that the two inch ‘mass’ she was telling me about was a shadow, reduced from the four inch mass that had been there fourteen years ago. I found it too much of a coincidence that in nearly the same place as I had a tumor before there was one now, it had to be scar tissue. I told her so too. So, she sent for the information. If not from across town we were going to send to Stanford for the results of my experimental procedure and all the data that we could get to compare…before and after. This all takes time. As I mentioned before I am not the most patient of people.
I told a few friends, but I also stated, I’m not fighting if this is what they think it is…you see, I fought so hard when I was younger and it took everything out of me. That procedure was so horrible, I was so sick, that I don’t even want to remember it. Much of it I have blocked out and forgotten. I don’t want a repeat of it, in any form. So, I’ve already made my decision. I won’t fight it if the fates give me cancer again because I don’t have it in me to fight it again.
Fortunately I didn’t have to make that dire decision. I was right. I don’t like saying ‘I told you so,’ I really don’t, but in this case… The doctor called today to tell me the ‘mass’ is indeed the shadow, the scar tissue from old. I’m terrible about scarring on the outside, I can imagine what I’m like on the inside where all this went on. It’s been a rough couple of weeks I’ll tell you, but I got a lot of tears and lot of thoughts out of the way. It’s amazing how much you introspect when something like this happens to you. So I’m here for a while yet, to tell more of my stories, to annoy my friends (lol), and to keep going…until next time!
I once wrote about my cancer by giving one of my characters my cancer and some of what I went through. I didn’t have to embellish it, it was dramatic enough. If you want to read that story, please check out my book GERMANIC here on my website at www.kannemeinel.com. I recently upgraded my website, take a look around, it’s fantastic what technology can do!
See you around cyber!