Saturday, August 23, 2014

16 Years Cancer Free

My cancer free anniversary came and went without me even pausing to notice it. Sixteen years ago a tumor was wrapped around my aorta twice. Sixteen years ago my sternum was split in half with an electric saw. Sixteen years.

I was 29. Now I am... not 29.
My daughter was eight. Now she is 24.
Weeks after my surgery, my husband and I celebrated our 9th wedding anniversary. In just a few days, on September 9th, is our 25th wedding anniversary.

During the last 16 years, the trees in my garden have grown taller. My dark hair has fallen out from chemo. And grown back. And fallen out again from more chemo. And grown back all over again. Now it is streaked with gray.

After my surgery, I got carded at the liquor store. Now my daughter gets carded. Through my bifocals, I watch her pull out her ID. When she pours herself a cocktail, I wrestle back the urge to tell her, "Hey, what are you doing!" Then I remember she is 24 and I am... not young anymore.

Aging means aches and pains in the morning. It means middle age spread. It means wrinkles and gray hair. And it means you have survived. You survived close calls and near misses. You survived failures and set backs. You have been knocked over, and pushed down, and held down, and stressed to tears. And gotten back up again. You have learned to deal with pain, because pain is as much a part of life as laughter. No one tells you this. You learn it the hard way, the ugly way, the way that leaves seven inch surgical scars that still ache 16 years later when you turn your head to back up the car in the driveway.

Aging is the most amazing thing that can happen. It is proof you lived, even when death was an option. Aging is a gift to be celebrated. Gray hair, scars, and all.

Monday, August 11, 2014

If Suicide Makes Sense

Today the world learned Robin Williams committed suicide. I'm feeling shocked and saddened. I've read comments that he had everything to live for, that he was selfish, and on and on they go. The hard truth is, when someone is badly depressed, everything stops making sense. Everything is dark and the pain is excruciating. I am so sorry Robin was in so much pain. I couldn't help him. Maybe I can help you.

If I had to choose between having a nine hour chest cracking cancer surgery again, or be suicidally depressed again, I would choose surgery. It hurts less.

If I had to choose between 24 more cycles of intense chemotherapy again, or be suicidally depressed again, I would choose chemotherapy. It hurts less.

Deep depression is isolating, and frightening, and so painfully lonely that no love can enter inside. Depression feels like being trapped in a hole so deep no light can penetrate. People flippantly say that, "Suicide is a permanent solution to a temporary problem," but this just isn't true. If you are trapped in a place without light, or hope, or love, feeling like committing suicide to escape makes sense. When you are that depressed, suicidal thoughts are the only light you can find on your own. And that is a scary place to be.

Suicide is an attempt to solve a problem of intense emotional pain with impaired problem-solving skills--Kalafat & Underwood, 1989

 Thoughts of suicide feel like a comfort, and way out of this hellish trap. Suicide is the only way out  you can come up with to make the pain stop. If you are in that place right now, and found this blog because you are suicidal, please understand this: The reason you cannot escape the dark is because someone else has the key to let you out.

You need to ask someone for the key. Tell someone that you hurt inside. Someone who won't laugh it off. Someone who will hear you. You can call emergency services, or go to the hospital. Speak to a doctor. Speak to a crisis hotline. A teacher. A neighbor. A parent. A spouse. A sibling. A friend. The person who hears you has the key to unlock this dark pit.

You don't have the key, and you can't think your way out of depression. You need to ask someone to help you escape. They will unlock the door and lead you to the help you need. The key exists. I know it does, because someone unlocked the door for me. I am alive and well now. It wasn't easy to get better, but I did get better. So will you.

There are medications that can help. Doctors and nurses who can help. There are tools you can learn to help you problem solve. There is hope on the other side of the dark pit. Ask someone for help. Please. I've lost three friends to suicide, and I don't want to lose another friend. If you are here reading my blog, you're my friend. Your life matters to me, even if it doesn't matter to you right now. If you hurt so much inside that suicide makes sense, please get help. Please.

Saturday, August 2, 2014

Good News

We increased April's insulin dose and now she is back to her old tricks.






I never thought I would be glad to see April getting into the garbage. Thanks to insulin, we have our old dog back. I'm a lot less stressed now.

Tuesday, July 8, 2014

Slow and Steady Makes Me Crazy

Yesterday's blood sugar readings:

8:00 -- 509
11:00 -- 478
2:00 -- 482
5:00 -- 537
8:00 -- 486

This morning's fasting blood sugar: 533

The only good news is, these aren't my numbers. They are my dog April's numbers. My dog's blood is turning into pancake syrup. I see these numbers and I want to scream DO SOMETHING! I call the vet and she is worried about April going low.

Low. LOW? Are you sh*tting me? If April had a low, I would have a party in celebration! A low would be welcome news. Treat the low, adjust insulin back one unit, and move on. A fasting BG of 533? All I see is death. I fear I am watching my dog die from under-treated diabetes.

April is still losing weight. At this point I am afraid to walk her around the block because someone will call the ASPCA on me for not feeding her. Her rib bones are sticking out. Her hip bones are showing. I can see her spine. This dog is going to die from high blood sugar and my vet is worried about going low.

Maybe if I didn't know what high blood sugar feels like it wouldn't bother me so much. Maybe ignorance is bliss. I know what super high blood sugar feels like. It feels like you're gonna die. This super conservative approach to April's diabetes is making me crazy.

Slow and steady might win the race, but at least running around in circles feels like doing something. I want to bang my head against the wall. We just adjusted her up 4 more units a day. I hope it's better. It has to be better. I can't take much more of this.

Sunday, June 29, 2014

My Dog Has Diabetes

It's been an overwhelming month around here. Our dog April was bitten by a tick during our trip to West Virginia. She got very sick and I rushed her to the emergency vet at one in the morning.

We had to force feed her for a few days, but she got better. The following week we went on vacation again, to Wisconsin this time. At my aunt and uncle's cottage, April kept rushing down to the lake to drink. She drank and drank and drank. And peed, and peed, and peed.

At home, she started having accidents in the house. The water dish was always dry. I wondered, does April have diabetes? We took our 11-year-old dog to the vet. She weighed 58 pounds. A month ago April was 75 pounds. A 17 pound weight loss in a month!

Excessive thirst, check.
Excessive urination, check.
Weight loss, check.
Always hungry, check.
I know these symptoms. I've been here before. This sounds a lot like diabetes. So, I told the vet, "I think I know what's wrong with her."

The vet said, "What do you think is wrong?"

"I think my dog has diabetes." The vet thought it was a whole bunch of other stuff, but maybe not diabetes. To humor me, the vet checked April's blood glucose. April's blood sugar was 644! No wonder April was feeling horrible. I diagnosed my own dog with diabetes. After a night in the vet hospital getting fluids and starting on insulin, we took our dog home.

It's been a stressful adjustment. April is on NPH insulin, twice a day. Keeping her insulin on one side of the fridge, and mine on the other, was the first thing I did. Also, her insulin is cloudy and mine is clear, so that helps. I prefill two syringes before I go to bed. That way I can tell at a glance if I gave April her shot. Right now giving April insulin is new, but in a few weeks this will become a routine. That's when mistakes can happen. I'm doing my best to head them off.

April is improving. Insulin is magic that way. I've been testing her blood sugar at home using a Onetouch meter. She's ranging from 325-205. If this was me, I would correct. I hate being high. With two shots a day of NPH, I have no way of correcting April's blood sugar. I am trying not to let this bother me. But, of course it does bother me. I know the long term damage high blood sugar can do. I know what high blood sugar feels like. I don't want my dog to feel like that.

Still...

I'm having to adjust my thinking. April's diabetes does not need to be micromanaged like mine does. A weimaraner's lifespan is 12 to 13 years. She is 11. If we treat her diabetes aggressively, April has a year or so to live. If we don't treat it aggressively, April has a year or so to live. I test her blood sugar three times a day to help the vet adjust her insulin dose accordingly. Once we have things dialed in, I won't test as often. There is no need to test her 10 times a day like I do myself. She eats the same food, at the same time, in the same amount, every day. Her blood sugars aren't going to go crazy because of something she ate. Keeping her stress down is important to me as well. She's not a young pup anymore. But, she is still a great dog.

April isn't having accidents and is doing better every day. She likes to snuggle on the couch with her dad and her favorite cat, Fresh Air. She likes short walks in the woods. She's a good dog. A great dog. And now a dog living with diabetes, just like me.

Here are a few pictures of Miss April over the years. The yellow dog is her best friend, Honey. The first picture is from 2003. The last one was taken in December 2013.







Monday, June 2, 2014

Dexcom Darn you!

Dexcom woke me up, beeping at three am. Warning! Warning! You're below 55. Wake up! You're below 55! Beep! Beep! Warning! Warning! Danger!

I opened one eye. The screen said 48. I fumbled for my testing strips and checked my finger. 160. Dexcom!  You woke me up for no reason. Shut up!

I entered 160 in Dexcom and shut it off.

I'm not one of those people who can fall back to sleep after I wake up. My brain starts playing remember when? Only these are never pleasant memories. Why do they come pouring into my brain in the middle of the night? Flick on the Apple TV. Scroll to Netflix. Pick a random documentary on Ancient Egypt. Netflix has them all listed for me. Based on my profile I am fascinated with Ancient Egypt. I'm not. Shows about Ancient Egypt put me to sleep.

I slept for another hour. Dexcom woke me up beeping at four.

Warning! Warning! Your blood sugar is high! I repeat, your blood sugar is high! Danger! Danger! Warning! Warning!

I opened one eye. The screen said 237. I fumbled for my testing strips and checked my finger. 130. Dexcom! You woke me up for no reason again! Shut up!

Twice in one night it woke me up with false alarms. I wanted to throw my Dexcom across the room. I turned on another documentary about Ancient Egypt and fell asleep.

 My alarm clock went off at 5 in the morning.

Urgh! I'm not a morning person. I'm especially not a morning person when Dexcom goes crazy. The first night with a brand new sensor sucks. Hopefully, tonight is much better. Of course, tomorrow I don't have to get up at 5 in the morning. Thanks Dexcom. Thanks a lot. 

Friday, May 30, 2014

When you gotta go

My brother-in-law invited us to visit his cabin in rural West Virginia. For a few days we enjoyed mountains, rivers, waterfalls, winding roads, tall trees, and a billion stars. We even fed the deer on his property. Being there was relaxing. Unfortunately, getting there wasn't relaxing, thanks to diabetes.

Before the trip, I had everything planned. I know because I made a checklist. I also made a checklist of things I was going to put on my checklist. Insulin, check. Back up insulin in case I drop my vial, check. Sets, check. Extra sets, check. Extra extra sets, check. Test strips, check. Extra test strips, check. Dexcom sensors, check. Glucose tablets, check.

I packed our clothes, treats for the dog, our pillows, assorted electronic gadgets, and then I programmed the GPS. The route was simple. A straight shot all the way across Indiana and Ohio, wander into Pennsyvania for a bit, then cut into Maryland and finally West Virginia. Six states. 12 hours in the car.

My husband and I left in the middle of the night, because we are not insane. Leaving in the middle of the night means avoiding Chicago traffic on the Tri-State Tollway and the Borman Expressway. A quick zip and a zigzag and we were flying down the Indiana Tollroad. West Virginia, here we come.

Then... Dexcom alarmed the sound of doom. Blood sugar is rising, double arrows up. 180. 209. 224. 257. 310. What The FRUCTOSE? I corrected. I corrected again, and set a temporary basal rate. What is the one thing you don't want to have while on a road trip? The two hallmark signs of diabetes: excessive thirst and excessive urination.

We were on the Indiana Tollroad when "it" hit me. I had to go. NOW! There are five rest stops in Indiana. There are eight in Ohio. I know because I counted! By the time I walked from the rest stop back to the car, I had to go again. This was ridiculous! A 12 hour car ride extended to a 14 hour trip. Thanks diabetes. Thanks a lot.

Still, the trip was wonderful and I enjoyed being away. It's good to travel. It's good to come home.

Wednesday, April 30, 2014

Goodbye Old Dr. & Hello New Dr.

Last year my neurologist retired. I held back tears in the car on the way home from my last appointment. Dr. F was amazing. He made me feel secure in my ability to manage MG. When MG got beyond out of control, it was Dr. F who suggested experimenting with IV chemotherapy. Although 23 cycles of moderately high doses of chemo was hard to deal with, Dr. F always made me laugh.

After I lost my hair, I went to my appointment wearing a soft purple cap. I was self-conscious and so uncomfortable in the waiting room. It was obvious I was bald and had no eyebrows. I looked at the floor, eyes full of tears.

Dr. F came into the waiting room and said, "Hey, Baldy! C'mere!"

I started laughing. The 18 months of chemo didn't put my MG into remission like we hoped. Clearly pounding the crap out of me for another 18 months wasn't going to do it either. So, Dr. F and my oncologist got together and came up with a different plan.
Now I take chemotherapy pills at home, and I grew back my long hair. Year after year I kept seeing Dr. F and every appointment I was reassured that I was doing OK. He always said, "For the shape you're in, you're in good shape."

After he retired, he passed his practice to a new doctor, Dr. P. Today I had my first appointment with Dr. P and I was nervous. Would she be as kind and compassionate as Dr. F? I've had some doctors that were rude and unkind. Meeting a new doctor turns my insides to jelly.

Dr. P went over the notes Dr. F left her. We talked about MG and how it's going. I told her I had weak breathing last week. She asked what I did about it. Wait and take Mestinon as always. She let me know I made the right choices. Dr. P reaffirmed what Dr. F said to me over the years, "You know your body and you know what you're doing."

When a doctor treats me with respect and affirms my competence, I know I am in good hands. If I didn't know how to manage MG, I would be dead. Instead I am here, thriving and growing.

I know when I need 90 milligrams of Mestion and when I need 60. Last time I came out of surgery, and my breathing muscles didn't want to wake up, I told the nurse I needed 90 mg of Mestinon. Dr. F must have written the orders, because she didn't hesitate or argue. One and half tablets were in my hand in seconds.

My new doctor gave me the same confidence that I know what I'm doing when it comes to MG. She also offered compassion. MG is an endlessly frustrating and ridiculously hard disease to live with. It is also frustrating for doctors to treat. They can see what is wrong, but cannot fix it. Suppressing the immune system, so the antibody attack is slowed down, is the best they can do. I know taking weekly chemotherapy for the rest of my life is not optimal. My new doctor let me know that she understands.

Compassion + Knowledge + Respect for the patient = an awesome doctor. I'm glad I met you today, Dr. P. Thanks for everything.

Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

If you email me your personal information will not be shared without your permission and your email address will not be sold. I hate spam. Even with eggs.

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