Another NEW year, celebrate WITH me!

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.

If you wish to read more about my cancer story, please click here, here, here, and for the first mention, here.

AND, as always, check out my website to look at all my amazing books!  (Click on the picture to be taken to the site)

crossing-quills-with-www-kannemeinel-com

 

 

 

 

 

 

 

I am a SURVIVOR!

Lymphoma-CancerThis 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.32583_1459142009508_402903_n

imagesCAZSC590I 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!

GermanicI 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.

The DEATH SENTENCE

1 K'Anne 10-25-2012

THE DEATH SENTENCE

Another year has come and gone.  Yes, most people start their New Year in January; some cultures have other time tables for their ‘New Years.’  Mine start every April because 14 years ago I was given a death sentence

Every year about this time I get nostalgic.  Not for the sounds of spring, although I’ve waited through a long winter (since October for that), not for life to begin again, although that too has happened.  You see, 14 years ago I wasn’t feeling very well.  I couldn’t BREATHE.  I made a doctor’s appointment for two days after I would return from a business trip.  On the way to the doctor’s appointment, I ran out of gas.  These were the days that not everyone had a cell phone so I missed my appointment and when I finally made it to a phone, they said the doctor wasn’t available for two weeks.  Given the way I was feeling, that was too long!  I asked if there was anything else we could do.  Since the Nurse Practitioner was available, I eagerly grasped at that idea.

I saw the Nurse Practitioner on Wednesday.  On Thursday I had x-rays, a lot of them, intensive ones.  On Friday, they were to do a biopsy of my neck, instead they removed all the lymph nodes on the right side of my neck.  I know, I was awake for this procedure, anestheticized so I wouldn’t move, but awake and had to talk so they wouldn’t cut into my vocal chords by mistake.  I could however see everything in the shine of the metal holding the lights above me.  Watching them cut and pull out the lumps that constituted my lymph nodes was gross, the sensation made it worse.

The following week it was confirmed, I had Lymphoma – Cancer.  It was pretty extensive in the upper part of my body.  I had it on both sides of my neck, a 10cm (4 inch) tumor over my heart and lung, and another tumor (no size was mentioned) under my arm.  I was told if I did NOTHING that I had 4-5 months to LIVE.  My sons were 10 & 12 at the time and we went to my mother’s funeral from cancer in January.  She’d been their second parent so the fear in all three of us was real.

Normal Chemotherapy takes twelve months or more.  We didn’t have the time.  My doctor had heard of an experiment going on in Stanford up by Palo Alto and nearby San Francisco.  It was called The Stanford Five Protocol.  One week you got three poisons, one week you got two.  I didn’t even hesitate, I said, let’s go for it.  Just wanted to make sure I got the medicine and not a placebo or something.  He said he’d make sure I got the meds, I don’t know how he did it but I was soon hooked up to an I.V. that made my veins burn with cold. 

Within two weeks my waist length hair was falling out and I shaved it off, so much of our confidence is tied into our appearance and I no longer cared .  Every week for Nine weeks I went in, by myself, sometimes with my Golden Retriever – Sophie in the car with me.  I thought I’d be done and out the door after that 9th week.  Nope, I was told they were going to do a full TWELVE weeks.  THAT was DEPRESSING.  Those last couple of weeks were the HARDEST to go in and have that poison pumped in my now hiding veins.  Essentially I took twelve MONTHS of chemotherapy but in twelve WEEKS.

For someone who was given such a prognosis of 4-5 months, reflecting on that occasion is an annual event.  I’m here, it’s been 14 YEARS and I’m still kicking.  Yes the residual pains SUCK as I will ache FOREVER, the joints hurt like hell and I’m a bit more fragile than I used to be, but the point is…I’m HERE.  I have since broken bones, sprained things, and watched my poor body age BUT… 

None of my books would have been written, I wouldn’t have seen some of the things I have seen, and I wouldn’t have had a lot of the blessings I have been fortunate enough to experience…but I am HERE, I am QUEER, and I am ALIVE and LIVING!   Every day is a blessing, and while I’m certain I’m living on ‘borrowed’ time, I’m LIVING!

Original Post: Do you believe in Miracles?

Do you believe in Miracles?

DO YOU BELIEVE IN PRESENT DAY MIRACLES?

I’m not talking about the miracle of a new day or the miracle of new born baby. I’m talking about KNOWING or actually EXPERIENCING one first hand.

A woman goes to the doctor on a Wednesday in April of 2001 experiencing breathing problems. She knows deep down that something is wrong. The nurse practitioner examines her. It is believed that the woman may have lymphoma as her glands in her neck are so swollen that it is cutting off her windpipe. She goes in on Thursday for X-ray’s. Friday she is scheduled for a biopsy. While cutting into her neck for the biopsy the surgeon decides to remove all the lymph nodes on the right side of her neck. This woman even drives herself home from this surgery (without the hospital or doctor’s knowledge of course). Four days later she has an oncologist (a cancer doctor) telling her her options for treatment. They do not know the results of her surgery as yet but the options for treatment are grim thus far. It is decided to send the lymph nodes to Stanford Medical Center one of the leading cancer treatment centers in the WORLD. Remember this has only been one week in this woman’s life.

Another week goes by and the woman is experiencing worry, anxiety, and impatience. This woman is only 34 years old and has two children to raise on her own. Her siblings are far away. She is alone.

Finally the Doctor’s office calls to tell her the results. It is confirmed as non-Hodgkin’s Lymphoma type B. That doesn’t mean anything to her. The doctor asks for her to come in for a meeting. During the course of the meeting the doctor explains the extent of the disease. She has a 4 inch tumor over her heart and lung, inoperable. She has another one under her left underarm. Several along the left side of her neck. The ones on the right have been removed. The doctor explains that she has at most 4-5 months to live. Normal Chemotherapy takes 12 months. Remember this woman is only 34, this is only April and they are giving her dire news. The doctor offers an alternative. There is an experimental treatment through Stanford Medical. It is called the Stanford Five Protocol. It will take 9-12 weeks and she will be very very ill. Without hesitation she grasps at this straw and agrees. The doctor is taken aback. He again explains that this is experimental and there are no guarantees. The woman comes back with there is no time for normal procedures so what choice does she really have. Two weeks later the doctor has ordered the experimental medicines to his office and they begin treatment. First they must harvest some of her bone marrow for evaluation. Ever get a huge needle through your hip into your bone? Ever have the doctor miss the site, repeatedly? It is extremely painful.

In the meantime the woman gets her affairs in order and writes her will. She informs her family of the dire news including her siblings and children. She hides nothing from her children as she will need them to be brave. Her youngest cries with her.

Starting treatment isn’t easy. They give her an IV full of the poisons that they must administer to save her. One of these is a mustard treatment that in gas form was used in the World Wars by the German’s to kill their enemies. Ironic that something so terrible can now do good. The IV drip takes about a half an hour or so. Feeling fine the woman leaves the doctor’s office to drive herself back to work. About 2 hours later she begins projectile vomiting, a normal cause and effect of cancer treatment.

During the 12 weeks of this therapy she goes weekly for these treatments. They vary from week to week. Three of the poisons one week, two the other weeks. Four weeks into treatment she begins to lose her waist length hair. After a week of being able to pull out chunks of hair she shaves it all off and begins to wear scarves and a hat. Soon after she becomes anemic. They start her on more medicines. One shot alone she must have almost daily. It costs $500 per shot and must be refrigerated. Have you ever had cold ice literally run into your veins? Her veins have begun to disappear. On her right arm they can no longer find the vein, and then they can no longer use it anyway due to scar tissue developing. They offer to put in a shunt in her chest for the treatments but she refuses. One vein in her right arm twists of its own accord. They mention the possibility of cutting in to remove or realign it. It’s painful but they decide to wait to see if it will twist itself back.

Her days begin to take on a sameness. She wakes at 5am and eats a banana. In a half hour she takes 8 pills that will help to keep her alive to survive the treatments. One is to help her with nausea, one is a tranquilizer, one makes her cold. Within an hour she will most likely vomit all of them up. In an average day she takes 16 pills. Some are the size of horse pills. The doctor tells her to cut that one in half to take it, no way then that seems that she is taking an extra pill! Laughter sustains her. The only things she can eat are fresh fruits. She loses weight.

The doctor is amazed with her mental attitude. Her sense of humor doesn’t waver. In fact he is watching this closely as a good mental attitude helps as much as the medicines. She finds humor in the coldness of the medicines, the colors, the illness itself.

She is expecting only 9 weeks of this treatment. The doctor decides to go with the full 12 weeks. After the 10th she looks back. She has been in the office of this doctor almost daily for some treatments. Now it begins to depress her. The last two weeks are purely hell for her. She finally misses an appointment as she is too nauseous to drive herself. The doctor is concerned and offers to send an ambulance. She refuses but makes the next day’s appointment. She makes it through the full 12 weeks. They are finished with this! No more IV’s. They’ve tortured her for the last time. Or is she through.

They begin to wean her off the pills. She runs out of some and refuses to renew the prescriptions. She goes into severe withdrawal. The doctor informs her that at 34 she is going through menopause. This devastates her as much as the news of the disease. It takes almost two weeks to go through all the symptoms of withdrawal. She continues to shake for over a month.

After a month this woman moves across the country to be nearer her family. The doctor advises her against it but she needs it for her well-being. She drives herself, her children, and their pets across the country. She is exhausted, shaky, and feeble. From some of the pills she is still going through withdrawals. Her hair begins to grow back. A month later she begins radiation therapy.

They give her three tattoos for this. She draws on her sense of humor for this. The radiation treatments leave her dizzy and slightly nauseous. It also causes her to gain a lot of weight. She drives herself to these weekly appointments. When they are finished the doctor believes that the lymphoma is gone. The x-ray’s show nothing but a bump in her chest. Twice a year for several years then once a year for life are the checkups. That’s it, she can go.

Her 35th birthday comes and she celebrates it with friends and family. She really has something to celebrate. She beat the 4-5 month prognosis.

I BELIEVE IN MIRACLES. This happened to me in 2001.

K’Anne Meinel