Introducing Princess “Shelby” Noel Wigglebutt

I finally found a miniature schnauzer puppy !  After 2 months of looking online and in the local newspaper, I finally found a puppy that was exactly what I was looking for.  I had to do a long day of driving WAY outside of my comfort zone with the dysautonomia and joint/pain issues- and it’s only because it’s winter and cold here that it was even possible.  My knees are still not happy- but she is SO worth it.

Shelby (as I call her) is 9 weeks old. She got a good report from my vet, and has been a joy in the 3 1/2 days that I’ve had her home. She has a lot of energy, and is ‘loose’ in my apartment all day (sleeps in a dog tent at night on my bed with me), and is using more energy than she had been, so is having some mild hypoglycemia symptoms. That is common in puppies, and they generally outgrow it. So, to fix that, she’s getting four meals a day instead of three.  She does have several naps during the day, but if I get up, she wakes up and follows me everywhere… one time I managed to not wake her up initially, but she woke up and found me not around, and cried until I called her (she has no clue what her name is yet, but my voice settled her down).

Shelby’s name comes from Julia Roberts character in ‘Steel Magnolias’. The ‘Princess’ part is what her breeder mom called her.  Noel is for being born on Christmas Eve, and Wigglebutt is what her tail does !

It’s been so lonely since Mandy died.  It’s wonderful to have a lively little being in my life again. She’s got a great temperament (and I met her parents, who are sweet dogs as well).  The drive was really hard on the dysautonomia and arthritis, but I’d do it again if I knew she was the end result.

Meet Shelby:

Princess "Shelby" Noel Wigglebutt

Princess “Shelby” Noel Wigglebutt

Shelby

Shelby asleep….

Shelby in one  of her toy bins :)

Shelby in one of her toy bins 🙂

The Night Before Christmas…

…my new puppy was born, though I didn’t know it until today.  My dad was here, and I was going through online ads for miniature schnauzer puppies. Most were either too far away, had something funky going on with their eyes, or some had disconnected phone numbers. Not a good sign.  Then I found an ad that had been posted just a couple of days ago, and I called the breeder. After a few questions, I asked if I could talk it over with my dad and call her back- no problem.

We talked about it for a few minutes, but his fatigue after driving home from Florida over the last several days was catching up with him.  He said we’d talk later.  I called the lady back, and explained the situation, but said I’d be talking to him about me driving the distance to get the puppy on my own. In the winter, I do better, and have plenty of opportunity to stop and rest if needed.  I’d already decided to go by myself- after all, I’d driven over 1200 miles when I moved back here, and while I’m not able to drive very far in just any weather (i.e. when it’s above 50 degrees outside), 35 degrees should be OK.  I got part of the cash at the ATM (will get the rest tomorrow), and made some plans and got the travel crate together.

I talked to dad later, and he agreed; he’s pooped. I told him how I was getting there, and we double checked to be sure he had my cell phone number.  All was well.

My new puppy (Shelby) was born on Christmas Eve- nearly 9 weeks ago.  That was the same day as my last photo of my dear Mandy who died on December 27, 2012.  I like the information the breeder gave me.  And the photos are adorable. Tomorrow, a new phase of my life starts, that will involve patience, some frustration, but mostly a new little life to love.  I’m so ready.  I’ve got puppy teething toys, a ton of stuffed animals, and a new dog bed, along with many other things.

Tonight is my last night in my bed without my new dog.  I’m not sure I’ll sleep !!

People Who Literally Make Me Sick (Dysautonomia)

That may sound ridiculous, but within the walls of dysautonomia,  anything that triggers a fight or flight response is something to be avoided at all costs. Unfortunately, that includes  avoiding people who come across as harshly combative, unapproachable, condescending, promoting hate, and/or having no respect for anybody but themselves and their very narrow circle of (usually) legalistic Christians.  It’s sad.  Several of these people are folks I’d hoped to reconnect with, or at least get to know better.  But when interactions with them actually trigger the heart rate abnormalities and changes, and other dysautonomia symptoms, I can’t have anything to do with them.  😦

I love the Lord with all I am.  I try to look at things with a non-judgemental view, and realize that I’m only responsible for my own actions.  I’m also supposed to be a representative of Jesus, and He Himself said that He is love.  Love doesn’t have a place for hate, rudeness, impatience, unkindness, abruptness, superiority, pride, or anything else that pushes others away.   I feel like I fail that because of not being able to physically tolerate hostile and confrontational people.  I don’t like that my life is better without some people in it, and for that ‘all’ I can do is pray.  Being sick because of them helps nobody. 

I see so much hatred for our President.  That saddens me.  I don’t have to like what he promotes, or believe anything he believes. But promoting and spreading unkind words doesn’t reflect him  nearly as much as it does my own character.  I’m supposed to pray for him as well.  It’s the most powerful thing I have for those who disregard what I believe… and just because I don’t agree with some things doesn’t mean that I disagree with everything.  I don’t claim a political party… I don’t identify with any of them because of the extremism, which always repels more than it engages.

I see so much judgement for those who aren’t Bible-thumping, legalistic Christians (BY Bible-thumping legalistic Christians).  I believe in the Bible very strongly. But I also believe that I don’t know a whole lot more than what I do know.  Because of that, I don’t feel like judgement is my right.  I believe that a Christian is supposed to represent Christ, and not be judge, jury, and executioner for people they don’t know.  I can only judge myself.  Each person will answer to God one day… not me.  I don’t believe in legalism. I believe in a relationship with God that is my own. I can’t live someone else’s relationship with Christ.  I can’t determine who is ‘enough’ of a Christian.  I’ve only walked in my own shoes.

I see so much condescension and disrespect online. Some people I know, but most I do not, and am thankful for that.  I can still pray for them.  I don’t have to like someone to wish them better than what they offer me.  I have had to block some of these people from my life because of the physical reaction to their apparent demeanor in whatever way they’ve communicated with me.  A huge part of communication- the non-verbal- is missing from anything written.  I don’t understand why some people can say things I strongly disagree with, and I don’t become sick, while others leave me needing medication to regulate my heart rate.  Maybe it’s because I’ve heard their tone, general demeanor, and know their personality well enough to know they typically communicate with kindness and respect.  I don’t know.

There are a few people who have been SO personally ‘combative’ in how they interact with me.  One refers to me as ‘human debris’, and has been blocked from my life for several years. I wish him/her well in his/her life, but he/she’s too toxic to have anything to do with. There is another person who comes across as generally condescending in a bizarre way.  He/she also has some indescribable quality that pushes me away. I don’t like that I feel that way, yet I can’t control the way my body responds.  I’m not proud of that. I’ve tried to form some sort of relationship in the past, but there’s a huge wall.   Others who have pushed my body past the limits of being physically stable are those who have been friends of friends on FaceBook… unfortunately, their hateful combativeness with any interaction ended up in deleting the friend (at least on FaceBook; with some, there is still e-mail contact away from the venomous ‘friends’ of theirs.  IF someone had talked to someone I actually knew like that, THEY would be the one cut loose.  I won’t tolerate attacks when something is on a page with my name on it.

There are others who condemn someone very close to me for things that they may have heard about, but got either a biased report, or just enjoy grudges. The people who were there are not nearly as hateful as those who were not.  I will stand behind this person any day of the week.  He/she has always had my back. Has he/she annoyed me at times? Yep.  I’m sure I’ve done my share of being annoying.  (Anybody want to cast the first stone?)  My mom was very hard to live with.  She taught me that appearances and my weight determined my value as a person, and treated me as such. (In her own weird way, I know she loved me, but she was very damaging; I still love and miss her).   But, that is always blamed on my dad- by someone who wasn’t even there.  There are a lot of judgmental eyes on the most outwardly “Christian” side of the family… and that saddens me.  I had no idea how deep the hate ran until I moved back here, hoping to be closer to all of my family.  Evidently, they have no need or desire to move forward and be forgiving- or have anything to do with me, because of their feelings about my dad. (Not all, mind you…. but enough to make things difficult). 😦

Anyway, dysautonomia isn’t just about the physical limitations of standing or sitting too long, being overheated, or having pain push me over the edge. It’s also about being triggered emotionally,  while having all of the cognitive parts of the interaction being very rational, but having my body become ill.  It’s incredibly embarrassing.  I have medication that helps to some degree, but prevention is always better.  And sometimes prevention means avoidance.

I will always wish those people well.  🙂

Mandy Meltdowns

My sweet miniature schnauzer Mandy died seven weeks ago yesterday, on December 27th, 2012.  She was my sole companion for all of the years on disability, and absolute joy for the 11.75 years I had her with me.  Most of my human friends are in Texas, and I’ve been pretty much isolated since going on disability in April 2004. But Mandy was always here. We were with each other pretty much 24/7.  The bond was different than with other dogs I’ve had (though I loved them intensely, as well).  She knew my patterns and understood what I told her with an almost creepy accuracy.  My dad commented about that often.  He could tell her to do something, and she stared at him… if I said something, she knew what I wanted her to do and did it.  I miss her little quirks SO much.

The last few days have been really hard for some reason.  I’ve been sobbing when I think about how she just went limp on my lap after a few minutes of altered breathing and periodic looks of confusion. She knew that something wasn’t right. She stopped in her tracks after peeing on her pee pads (this was after she whimpered and had some type of ‘spell’ that was similar to other episodes during her nine months with congestive heart failure).  She actually had the ‘presence of mind’ to go to her pee pads after an episode that was to end her life in the next 15 minutes.  That ‘look’ made me feel that she was confused about what was happening, and so I picked up that sweet dog, and got her situated on her comforter, with a pee pad underneath, and got her onto my lap as I leaned back in my recliner. She had some ‘leakage’ issues when she’d have those spells. I knew that if she was dying, she’d have no control- even though she’d had that brief moment of clarity to run to her pee pads.   She knew something wasn’t right, but she also knew that I was holding her, and wasn’t leaving her to be confused on her own.

That last ‘episode’ was different from others. She’d whimpered and cried when she fainted before, and while that sound was horrific to listen to, she’d snap out of it and become alert fairly quickly. This was different. She woke up, but never seemed to become ‘clear’.  So, I knew that this was going to be the end- whether she died naturally in my arms, or if it went into some prolonged situation that could only be dealt with humanely at the vet’s office. Regardless, I knew I was watching my dog’s final moments.  This was my sole companion.  She was with me every single day during some really lousy stuff, and there was no judgement (about the disability issues) and only love and companionship (during the chemo for leukemia).  My best friend was dying in my arms.

When she had that ‘agonal’ breathing (deep, but very slow, and associated with the dying process), I saw the color of her tongue change.  It became pale.  She was no longer looking at me, but I talked to her and thanked her for being the amazing friend that she had been.  I told her how much I loved her.  But I also told her that it was OK to go.  She’d been through enough.  That’s what I used to do with human patients when I was working as a nurse, and while I’m sure Mandy didn’t understand those words, I had to say them.  I had to let her go.

The previous two weeks had been long and hard, and indicative that things were changing, but she’d been alert, and interested in what was going on.  Even that last morning, she was very eager to get Swedish meatballs for breakfast (she’d become very picky during that last 2 weeks).  But at the very end, I knew I had to say goodbye…to the single being that was with me every single day for nearly 12 years, and the only being that was with me after I ended  up home all day every day on disability.  I have regular phone contact with my dad, but my dog was always by my side.  All other contacts with humans at that point were either medical appointments, pharmacy and grocery clerks once a month, the vet, visits with my dad every couple of weeks or so,   and  package delivery people.  There was also the brief contact with family on Christmas Eve.  That was literally my only contact with people in person…. but Mandy was always there.

When she went limp on my lap, I knew she was gone.  No more struggling. No need to take her to the vet, wondering if she knew what was happening.  And feeling like I was ‘killing’ her (even though I believe in euthanasia for the sake of the dog).  No more of the agonal (or difficult) breathing. No more wondering when enough was enough. No more of the up and down roller coaster of watching her have hard periods of time when she seemed to be going downhill very quickly, but then have her bounce back, and being alert and curious the whole time.

She went naturally. She died in my arms. She knew I was with her.  She didn’t have to endure the stress of a car ride to the vet (it had become difficult for her because the excitement of being in the car made her breathing more labored).

But I wanted more time with her.  It was 2:45p.m. when she took her last breath, and the crematory closed at 4:00… I’d called them around 3:00 p.m., and they were waiting. Dad was on his way to drive me over there.  But I just wanted to hold her for a while longer.  She was my only friend that I had contact with other than online.  She was my life.  And she was gone… I just wanted a few more minutes.  Handing her over to the pet crematory staff (who were VERY compassionate and handled her very gently) was horrendous.  Shifting her from my arms to his was agonizing.  She was obviously lifeless, and yet it felt like I was giving part of my life away to death.

I can’t get these last minutes out of my head. I do still remember her quirky, funny times, but losing her hurts like salt in an open wound, in my heart. I knew the end result of canine heart failure, and I knew those last two weeks were winding down to the end… but it also felt like part of me went with her.  Having such little contact with other people (because of the disability and physical limitations) made my relationship with Mandy so different.  And she was special (as I know all pet owners feel about their babies 😉 ). Her understanding of what I told her was eerie and made her like having ‘someone’ here.  Before becoming disabled, my other dogs were amazing parts of my life- and I loved them deeply…yet I had contact with people at school and/or work during their lives.  Maybe I became too dependent on Mandy.  I don’t know.  I just know that this time was different.

I’m going to get another schnauzer; I’ve got a breeder in mind, and am awaiting news that their mama schnauzer is pregnant.  It’s really hard to wait, but I really like the breeder and photo of one of their past puppies.  In the meantime, I’m getting things ready for having a puppy again.  And, I go through ‘Mandy Meltdowns’ – more so the last few days.  Each day, something reminds me of what is missing.  Then I replay those last minutes, then weeks, in my head- and dissolve into tears.  I’ve lost two other schnauzers over the period of time from when I was a kid, through my late 30s… and this is different.  Yes, I missed those dogs a lot, but things got better over time; I’ve never forgotten them or their individual personalities (one was nuts, the other smart and social 🙂 ).  It seems like I’m stuck, even though I’m looking forward to the new puppy.

I just miss my sweet buddy.  She made my life so much better.

Mandy at 11 years old, 2012

Mandy at 11 years old, 2012

Mandy at 8 weeks old- summer 2001

Mandy at 8 weeks old- summer 2001

 

Mandy's final resting place. She is with her 'big sisters' and will be buried with me one day.  I still can't get rid of her pillow bed.

Mandy’s final resting place. She is with her ‘big sisters’ and will be buried with me one day.
I still can’t get rid of her pillow bed.

Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.

 

 

Blood Sugar Dump And Falling Into Walls

I didn’t feel that great yesterday.  Nothing specific, just a headache (which isn’t unusual for me at all), some queasiness, and just not feeling right.  So, I limited what I ate to jello, mashed potatoes, and other bland foods that provided some carbs to deal with the basal insulin dose I take twice a day.  The bland food helped the queasiness, and I figured I’d had enough carbs for the insulin.  I’m usually pretty good with my diabetic and  RN knowledge (nearly 28 years since graduating from nursing school; 20 years as a working RN taking care of a lot of diabetics, 17 years as a diabetic, and 8+ years of being disabled and learning a LOT from a patient’s point of view). I figured wrong.

I went to bed around 6:30 p.m.  Normally, I’m up until 2:00-3:00 a.m., easy.  I’m a night owl. And don’t talk to me before noon.  But, I was really tired, so I decided I’d either go to bed, sleep for a few hours, and then resume my normal night owl schedule, or I’d sleep straight through. I didn’t care.  I was still awake at 7:00 p.m., so decided I’d just take my nighttime meds (including my main dose of Lantus insulin) and be done with it for the night.  I crawled back into bed and fell asleep.

At 9:40 p.m. (it’s written down in my blood sugar log) I woke up to go to the bathroom, but felt really odd.  After falling into the walls walking to and from the bathroom, it dawned on my that I needed to check my blood sugar. It was 37mg/dl; I double checked it and it came back at 40mg/dl. It shouldn’t go below 70mg/dl, and my endocrinologist doesn’t want mine below 80mg/dl because of my history of epilepsy; I’m prone to seizures anyway- no point in adding hypoglycemia to the risks.  I was still with the program enough to grab one of my tubes of ‘gel’ candy (‘Squeeze Pops’ – cheaper than products marketed to diabetics, and tastes like Jolly Rancher candy, but in a tube, and a gel consistency). With some of that on board, I got some ginger ale. I checked my blood sugar about every 10 minutes until it had settled in the 90s (took about 30 minutes).  That was ‘safe’ enough to go to bed. I knew I needed a fat and protein source to keep from having rebound hypoglycemia, so justified a Reese’s Peanut Butter Cup 🙂  I was still really tired, but at least didn’t feel like I was having for force myself to stay conscious. That was better.

It’s really important to not ‘just’ do the simple carbs, or the hypoglycemia WILL come back.  I’ve been treated in a local ER, and they are clueless about the protein/fat source after getting the blood sugar back up. One time when I’d been brought in by ambulance for hypoglycemia, I was sent to the waiting room to wait for a cab, and was told the cab would be there in 45 minutes. The basic instructions for hypoglycemia are to  have a snack if the next meal is more than 30 minutes after treating the low blood sugar episode.  That’s ‘diabetes 101’ for lay people, yet the genius ER nurse was either clueless or just didn’t care (typical of that facility’s ER). When I was waiting for the cab, my blood sugar went down to the 50s again, and I told the triage desk person. She told me that since I’d already been seen, one of the nurses would talk to me IF she got time. I was safer in the cab going home.  It was really pathetic, and there’s no excuse for them.

My endocrinologist had prescribed a glucagon kit to me somewhat recently- but I live alone. Glucagon is designed for someone who has already lost consciousness, and requires someone else to mix the syringe of sterile solution with the little vial of powder, mix it up, pull it back into the syringe, and ‘shoot’ the person who is out of it.  I’m not sure how that is supposed to help me, except that I’ve dropped to the 30s before and couldn’t get it to come back up, while remaining alert. (I ended up calling 911 for that one, and getting IV D50W- that stuff feels awful going in)  I guess I could shoot myself.  Glucagon can be given under the skin (subcutaneously) or into a muscle (intramuscularly), so basically any good dart throw at the person will work.  I could do that. My outer mid-thigh would probably be the best place to aim for… a fair amount of real estate for a blurry eye and shaky hand.  But the kit I’ve got right now is expired by a month. It would probably still work, but last night, the edible carbs were working. I need to call the pharmacy for a refill on the glucagon….

For those ER nurses (and others; I’ve given it a few times working on a med-surg floor) who have given D50W, here’s a little inside information. The stuff doesn’t feel good.  It causes a strange warm feeling, and a feeling of needing to go to the bathroom NOW.  It’s unpleasant. It can also cause dehydration, depending on how high the blood sugar goes, with frequent urination and hyperosmolar  diuresis (frequent peeing from concentrated sugar in the blood).  Knowing this, and offering to help someone to the bathroom would be nice.  Go a little slow pushing the stuff- a few extra seconds isn’t going to cause brain damage.

It’s also important to realize that the half-life of D50W is dependent on the degree of hypoglycemia and the individual patient. Once it wears off, the blood sugar drops again UNLESS there is something to help prolong its effects, such as fat and protein.  Peanut butter and crackers, a candy bar, milk and crackers, or other protein/fat source is needed.  That’s also the reason that those items are not good for treating the severe low blood sugar. For ‘borderline’ or mild hypoglycemia (above 60mg/dl those will probably work OK… but always listen to facility policy if you’re treating a patient; if something goes south, that will be the criteria used to judge you).   The blood sugar will not rise quickly with protein and/or fat in the item being used to treat it.  Candy bars are NOT good ‘first aid’ for hypoglycemia, and will delay return to normal blood sugar because of the fat and protein. Once the blood sugar is raised with simple carbs, it’s necessary to give a fat/protein source- not before.

Anyhoo… I survived the night.  I hate the feeling of having low blood sugar, and last night included balance problems. Had the walls not been there, I would have hit the floor, which would have been bad news for my knees.  I’m not feeling that great today (same queasy, fatigue stuff as yesterday), but know to check my blood sugar more often today.

The Life of Cancer

When I was diagnosed with acute promyelocytic leukemia (APL) in late March 2010, I didn’t realize that cancer has a life of its own.  I expected to go through chemotherapy, have regular follow-up care, and move on. Done.  I’m already disabled, so I didn’t really think that cancer was going to be all that bad. I had been told that the  permanent remission rate for aggressively treated APL was upwards of %90.  I’d be fine.  My standard reply to many of the reactions to my having cancer was “this is the least of my problems; they can fix this”, and to some degree that is still true. But overall, I considered myself very fortunate.  There was a treatment that could really fix me. Not everyone with cancer is that fortunate.

I’ve been off of chemo for about 1.5 years (after 19 months of constant IV or oral chemotherapy, including 50 doses of arsenic IV… 2 25-dose cycles when I’d be in the hospital on a cardiac monitor during the infusion and then go home).  Chemo itself took a toll on my body and the other disorders I’ve got (diabetes- my blood sugars were absolutely nuts on chemo- much higher than usual; fibromyalgia- chemo has side effects involving muscle pain; dysautonomia- my heat intolerance got worse, and my heart rate and blood pressure have been more irritable).  I’ve had ‘chemo brain’ where I’m foggy sometimes, have trouble finding the right words to express myself when I’m speaking, and some memory issues.  Some of that has stuck around, and I’m not sure if it will improve. The blood sugar situation is getting much better, but the dysautonomia is still not good. My memory and word-finding are still not quite right.  But I’m alive. That’s good enough.  I can figure out how to deal with the rest.

I hadn’t expected the ongoing low grade anxiety about relapse and potential metastasis (yes, leukemia can spread).  A few months after stopping all chemo pills, I was scheduled for my annual girly exam. During that, my test to check for blood in my BM came back ‘somewhat’ positive, so I had to have a colonoscopy and upper endoscopy to check for any problems there.  While they were at it, they snatched me up for a mammogram (I’ve never been good at going in for those with any regularity), and because of worsening headaches, I ended up with an MRI of my head.  I also had a weird skin lesion that I needed to get biopsied, and had my first full body skin check by a dermatologist.  A lot of me was scoped, scanned, scraped, or squashed.  Fortunately, everything came out OK.  That was a huge relief.  I have never been all that paranoid about my health (I’m to the point of not reacting much to another diagnosis- I’ve had so many of them), but after a cancer diagnosis, things are different.  It has its own life, even when it’s not there.

I’m learning to relax a little bit, but I won’t ever feel like I’m really ‘safe’.  It’s coming up on three years since the oncologist told me I had leukemia. Had I not gone in for my annual diabetic lab work, I never would have known that my CBC (complete blood count) was absolutely trashed. It took two weeks to get in to see an oncologist, and he scheduled my bone marrow biopsy for a week after that; APL is generally fatal within a month of onset if not treated… and I was sort of put off, even though my lab work had been sent to the consulting oncologist.  As it was, I went to the ER with some shortness of breath the weekend before the scheduled bone marrow biopsy; with a history of  severe blood clots in my lungs, I’ve been instructed to always have anything ‘odd’ in my chest checked out immediately. Had I not gone to the ER,  I would have been another statistic of those who are diagnosed on autopsy, or literally days before death (I know of two people who had that happen last autumn…a 29 year old anchorwoman for the local NBC station, and an 11 year old kid; both were gone within 2 days of being diagnosed).  I’m lucky, and I do realize that.  And, I also know that early detection is the key to the best outcome… so I’m a bit on guard.

I also hadn’t realized how aggressive APL is when it’s not treated until the death of the local news anchor.  I was stunned that I was alive, and she had died just 2 days after she’d been diagnosed.  That was a mind-blower.  I had sort of coasted through chemo and not asked a lot of questions about how bad things were. Looking back, and knowing what my blood counts had dropped to (I got daily updated counts on a card in the hospital to keep track of things), and the purpura (little purple dots of bleeding under the skin), I now realize how ‘in trouble’ I was.   I now realize why there was a sense of urgency during those first days in the hospital (I was there for 6 weeks after going to the ER for the shortness of breath).  I understand why the ear infection was such a big deal, and why it was monitored so closely when it started to spread into my neck, and I had a  moderately high fever but very few white blood cells to fight infections. I was put on vancomycin and gentamycin for five weeks... That’s a long time for any antibiotic, and those two are heavy hitters.

So maybe I’ve gotten a little scared.  I might be a bit late in finally getting spooked, but it is what it is.  At the time, I was more focused on just getting through it.  Now, I’ve got the luxury of having things being stable enough (for my normal abnormal  self) to look at what had gone on.   I hope and pray that I’m in that %90+ that will never have a relapse.  I’ve learned to appreciate life a lot more, and not sweat the small stuff… and what is considered ‘small’ has been redefined many times.  As long as I can get through something, it’s not worth the energy to freak out over. The unknown is another matter.  And I have absolutely no control over that.

I know that I’ve survived all of the stuff that has gone on in my life for some reason. I’m not sure I understand what that purpose is yet- but I’m working on it.  I see a fairly long future, even with the assorted medical issues I’ve got going on.  It’s not like I’m spending my days thinking I’ve got the cancer back again.  But, I do wonder about the life my cancer had…is it gone for good, or is it dormant and waiting to come back?  Some may see that as fatalistic.  For me, it’s just life after aggressive leukemia and the many months of chemotherapy.   I’ve heard others who have had all sorts of cancers have the same feelings of ‘what next?’… it helps that I’m not alone with that.