Sunday, April 28, 2013

Still waiting for answers

I got the handicap placard with no resistance from the dr.  She was glad to sign the paper for me.  It's for 3 months after which time the dr hopes I'm back to normal...or better.  Fear is a powerful motivator when it comes to health.

I had never seen her pissed before but when she found out I still didn't have an appointment for an echocardiogram she was livid since time is pretty important.  The appt lady smugly claimed no one told her I needed one but the dr showed her the report that went her way.  She claimed she never got it and that she only knew I needed to see the cardiologist.  How could she know one without the other as they were both on the same paper?  I hope she got her ass chewed out after I left.

She made her call up and get me an appointment as soon as possible instead of faxing them so I go in at Wednesday at 7:15 a.m.  Groan!  It's an hour drive so I have to leave here about 6:15 which means I have to get up EARLY!!  Not looking forward to that but at least I just have to lie there under the ultrasound.  No poking at my already bruised arm.  I have three extremely large bruises still.  One went away quickly but the rest are still purple and yellow.

I'm waiting to find out what caused the CHF for sure and if we can do something to minimize the damage and if anything needs to be done to fix it...meaning heart surgery:  either valves or bypass.  If it's from the chemo, there's nothing much they can do except try to keep it from getting worse (which they can do) and possibly rehabilitate the heart a bit.  Though not a lot.

I wondered why they kept checking my ankles for swelling since my fluid was on the lungs which indicates left-sided damage.  Right side causes swelling on the ankles.  But when she showed me the ejection numbers, both of them were red, meaning I failed the tests.  I didn't ask but I wonder if that means both sides have damage. Which seems to me from what I read that that would indicate chemical damage rather than physical.  I don't want to speculate (although I can't seem to stop myself.)  Have to wait and see.

I've been getting some knitting done on the sweater and the second sock for Robyn.  I'm staying in bed a lot because I'm not supposed to exercise at all and movement is supposed to be limited.  I have fixed a few meals for myself but they were simple.  Poor Zach is cooking twice for each meal except breakfast.  And a few times when I could do it myself but we've reached a stage when I need more and better meals so he's going to get a lot of practice cooking until I'm back on my feet.

He's doing all the laundry, all the cleaning and almost all the cooking.  Without complaining at all.  Gotta love the guy!

Now I think I'm going to take a nap.  Even though I was on the cart, I did have to walk from the parking lot and back and I'm pretty tired.  I hope that goes away, too. 

Sunday, April 21, 2013

Living with mortality

There is a lot to adjust to, both physically and emotionally.  I made the mistake of looking up the longevity of people with congestive heart failure.  Quite different from the positivity the dr showed me at the ER.  Then again, when I looked up the prognosis for cancer survivors or my particular type, all the sources I saw only gave me about 5 years with a near-negative assurance that the cancer would come back.  It's been nearly 12 years. 

I'm going to make an appointment to see my gp Monday.  The nurse said she didn't need to see me but I need to see her.  I need a handicap placard for the car.  I just can't walk across parking lots like I used to.  And in the future I will use the electric carts at the store.  They didn't have any available when we went yesterday and I ended up thoroughly exhausted.  I was nearly in tears by the time we made it back to the car.  And yet I don't want to be a shut in and not be able to go anywhere in the future.

When we got home I rested, as the papers they sent home with me said after any activity.  I ended up sleeping for 3 hours actually.  And then went to sleep at a reasonable hour.  Today I've spent in bed most of the day.  I got up to check my email and went online for an hour but shut down and went back to bed.  Fixed myself breakfast, had help with lunch and will fix my own supper since all I have to do is pop it in the microwave.  I managed to lose the weight I had gained this week.  Don't know if that's because I was being faithful to my sodium allowance or if I just ate less and all that walking helped.  I'm sure it's both.

For the first time, in spite of what I have said in the past, I am giving in to the fatigue.  I am so very tired today, moreso than I remember in...well, ages.  I know now that it's not just a good idea to rest when I am tired, it's vital to the health of my heart.  It's not about being lazy or being perceived as being lazy.  I am tired for a reason.

I didn't knit yesterday because of the fatigue and probably won't today but I hope to get back to it tomorrow.  I'm ready to kitchner the toes of the first sock.  I don't have the concentration skills right now so I'm waiting until I've both rested and learned to put the stress in a place that is too high to reach.  That's another thing that I vital to outlasting the averages. 

It's a serious thing to realize you really do have a shelf life, a sell-by date.  I don't remember feeling this aware of my mortality when going through chemo, probably because I couldn't really see the end in spite of knowing the cancer could kill me.  In my mind, it might do so but it would be far off.  Now, as I edge closer to my 60th birthday, and as I am a week away from losing my mother, it's more real and much nearer than I used to think in my immortal days. I'm hyper-aware, a bit frightened by it all and yet at peace...very conflicting emotions. 

I don't intend to lay down and give up by any means.  I am working harder than I ever have to regain what I can of my health and hope that I can keep it up.  Follow through has never been my strong point.  Now it's a matter of life and death.  Very compelling.

Spirituality plays a part in all of this...the whole mind/body connection being what it is.  But that's for another blog.  I am at peace there, too.

So sorry to be so maudlin today.  I'm not trying to look death in the face and scoff.  I'm just being realistic and honest.  I haven't even processed my mother's death yet and now I face my own.  Whether it be in a couple of years or 10 years or 20.

And yet in the scheme of things, this congestive heart failure may have extended that expiration date as the way I was living was so harmful to my body that, had I gone on the way I was, my sell-by date could have been in months rather than years.  Certainly I didn't eat properly, didn't exercise and was weighted by mountains of stress that alone, were killing me.  Zach told me he likes to think of this as something that extends my life instead of limits it. 

I think I will look at it the way he does.

Thursday, April 18, 2013

Dealing with the aftermath of all this

I'm trying to find the positive in all this but I admit it's a hard search.  Yesterday there didn't seem to be any improvement.  The diuretics weren't working the way everyone said they would.  I wasn't in the bathroom every few minutes and my mouth felt dry all the time because I'm limited in the amount of fluids I can take in. Although I did have more output than input, I didn't lose an ounce yesterday. 

No more bacon, chips, french fries, canned soups, lunch meat, cheese...the list goes on and on.  I did have a half cup of diet soda yesterday because, damn it!  I miss it.  I miss coffee in the morning even if it is decaf.  I just don't have the amount of fluids to spare on coffee when I need it to keep my mouth wet.  I did go a bit over what the internet recommended but as I haven't had any specific instructions from any doctor yet, I don't know exactly how much I'm allowed.  Just to reduce my fluid intake and cut way back on sodium.

So far no side effects from the new meds, which is good but I'm bored and have cabin fever. I miss getting out...which isn't because of the congestive heart failure but because the truck still hasn't been fixed.  We were a little busy with emergency room visits. 

So I'm feeling a little pouty today, a lot lonely and extremely dependent on Tom.  I never liked that feeling at all. 

I did find something to do yesterday. I found two sweaters I never finished so I frogged them, well, one of them completely...the other down to just above the ribbing.  It looked like Hannibal had gotten in there to sleep and had kneaded the sweaters, breaking down the yarn a bit so I'm starting over. 

I also found Ballykissangel on Amazon prime to watch for free.  I love that show but as I can't walk from the parking lot to the library without gasping for breath, I can't get them from there so getting them from the internet is great!  I watched 3 episodes while ripping back on the sweaters.  I'll watch a few more today.  But  I keep falling asleep during the day.  I did sleep well last night but it was 4 a.m. before I got sleepy.  Up until then I just did some cat-napping.  Dozing and waking up 20 minutes later.

It's at times like this that I really miss my Mom.  I would have called her up and talked to her about this diagnosis and she would have told me of others she knows that have it and how well they're doing and some tips to get me through.  There's no one to talk to about this now.  No one.  Tom doesn't need it on top of all he's got going on...back to working 14 hour days and his very good friend lost his wife to cancer over the weekend and he couldn't get to the visitation or the funeral because of, 

I haven't properly grieved for my mother yet.  I'm sure I will someday but for now my present health crisis is overwhelming anything else going on in the world.  At least for me.  

Tuesday, April 16, 2013

We have a diagnosis

Once upon a time in a galaxy far, far awa--no, wait, that was this galaxy--I had chemo. Now chemo medications are mostly poisons that kill off cells in your body.  And while they can do great things to nasty cancer cells, they can also cause harm to healthy cells as well.  Fast forward to about a year ago when i started noticing I was tiring out more and more often and unable to function as well as I used to.  I thought it was the fibromyalgia which causes a lot of fatigue in the people who have it.

Not so.

Fast forward again to a month ago when I developed pneumonia that got better and then got gradually worse.  Unfortunately the pneumonia triggered that nasty side effect they warned me about, which was apparently already manifesting itself in my body anyway.

So my dr agreed with Dr. Jerk's expensive tests and sent me to the ER in Fond du Lac to meet with the pulmonologist and be evaluated by him.  Thankfully he sent me home after his assessment but unfortunately that nasty side effect will be with me until the day I check out.  The one side effect I really feared was congestive heart failure.  And that's what all this has been.  Initially it was the pneumonia, the pulmonologist agreed, but now it's not.

He assures me I will have a full life ahead of me but it won't be as active as it used to be as I now have limitations due to a weakened heart muscle.  On more meds now and hopefully this will get rid of the excess fluid in and around my lungs. 

I'm going to have to stay in bed for a while and then gradually get up and about, walking and such but no strenuous exercise and no really physical work at home.  At least for quite a while.

I'm still processing this emotionally but for now I'm going to bed and take a nap.

Monday, April 15, 2013

Life's ass kicking

I spent yesterday afternoon in the emergency room with a doctor who was convinced from the beginning that I never had pneumonia but some other exotic illness (as yet to be name) instead.  So I had many expensive tests that will further drive us further into debt...which was all brought on by medical expenses in the first place.  So I am on another inhaler and lasix to get rid of the fluid in my lungs still (more has been added to the left one plus some fluid on the heart as well) even though there is no evidence that my body is retaining fluid.  Apparently I didn't have pneumonia because my white count wasn't high enough (it's higher now) and I wasn't running a fever (it was 98.9, which for me is a fever as my normal temp is 97.2.)  I'm now running a temp of 99 so that apparently isn't a fever either.  So I can't wait to talk to my dr so I can find out what's really wrong.  This guy wants me to have an echocardiogram and see a pulmonologist.  If my dr says I should I will but this guy was pretty free with my money as well as the insurance's money.

My mother's funeral was today.  I wasn't there, of course but my sister said that over 300 people went to her viewing (it was listed as a "calling"...not sure why) and over 150 at her funeral.  The line to view her was 3 hours long.  My mom was a school secretary, among other things and was also very active in her church.  She affected a lot of people in her life.  I suppose it will sink in eventually.  I'm not even sure I'm past the acceptance stage yet as it's not that real for me.  They taped the funeral so I expect when I see the dvd it will become more real.

Obviously I'm not knitting much right now.  Staying in bed as much as I can, taking my meds and trying to rest.  I'm able to breathe through my nose now instead of panting through my mouth so that's an improvement.  I probably won't knit tonight either.  I'm going to rest.

Today is my husband and my oldest son's birthdays.  It was pretty crappy for Tom as he's had to wait on me and he also found out a good friend lost his wife to cancer over the weekend.  He knew them both so this hit him pretty hard.  My mom, whom he really loved, his friend's wife and me being sick.  Not a fun birthday.  So Zach took him out to eat and spend some time alone.  They haven't done that for years so I'm glad they can do this.  I hope his day improves. 

I should probably lie down for a bit and maybe take a nap.  I mostly just napped last night because the lasix kept me in need of the bathroom all night.  I need to get up early tomorrow and call the dr for an appointment for Zach.  He's still coughing after nearly a month.  And he's still got a sore throat.  Poor guy has been taking care of me and not getting rest himself.

Friday, April 12, 2013

She's gone

I got the call at 4:30 a.m.  I was still awake from when Tom got home so I knew immediately what the call meant.  Her long battle with kidney disease and infection and cancer is over and she is on the other side now, at peace.  I won't be going down for the funeral for several reasons, the biggest one being my health.  I'm still battling the pneumonia and now it looks like Zach might be battling it as well.  I'll try to get him an appointment on Monday. 

It will, of course, be a completely Christian funeral.  That is the religion of my family and that is the religion they should use to comfort themselves.  My older sister is a pastor and will deliver the eulogy.  They intend to record the service for me.

I'm pretty numb right now.  Not really feeling anything.  I haven't cried yet and don't know when I will.  But I do know that eventually I will cry.  We had to run to the store to get some cold medicine for Zach (and me) so we stopped in at Wendy's to grab a bite.  I'm friendly with one of the managers and several of the workers.  They could tell something was wrong and since Joe, having just lost his grandmother knew my mother was dying, knew immediately what it was.  I got hugs and a great deal of sympathy.  How odd that the only friends I have are at a fast food place.

Tom is taking some much-needed time off this weekend because he's about to burn out from all the hours he's working.  I hate to do this to him but I'm going to bed for the weekend and so is Zach.  I have an appointment with the dr on Tuesday and I don't want her putting me in the hospital.  I don't think she'll give me a second chance.  I got soups and microwaveable things. I desperately need to clean but that will just have to wait.  Along with the laundry.  Zach's panting like I have been doing so he can't be going up and down the stairs either.

It's still very surreal for me that my mother has died.  It was surreal that she was sick...this woman who was rarely ever sick until the last couple of years of her life.  The dementia took away the woman I knew but every now and then she surfaced and we could have those good phone calls.  Getting to see her one last time, knowing it was the last time and even though I never did say good bye, it was intimated and with that, there was closure.  And odd thing we humans need more than anything else, it seems.

And so I'm going back to bed, to knit the socks for my niece and sisters. 

Relief, numbness, sorrow and joy.  Odd emotions to process all at once but that's what is squirming around inside me now.

Wednesday, April 10, 2013


Mom is still with us.  I was able to "talk" to her earlier today. My older sister put the phone up to her ear but she didn't seem to react at all.  I'm not sure if she's in a coma now or just sleeping most of the time.  I forgot to ask.  I was able to say goodbye even if I didn't actually say the words but I feel better now and Mom leaving us.  It won't be much longer.  Although her vital signs were back to normal when I called Peg they were low this morning.  And she's no longer putting out urine so the toxins will probably build up more quickly now.  She's obviously in pain, too so they are keeping her up with pain meds and sleeping aid at night, but otherwise just care to make her comfortable. 

I haven't worked on much lately but I did knit on the sock a bit last night. Then had to un-knit everything I had accomplished because I made a mistake.  Obviously my mind wasn't on my work.  Zach wants a cover for his cell phone because he can't put it in his pocket because it will scratch so we got some Lion Brand blue variegated yarn.  It's some kind of Vanna's Choice but it's a bit pricier than the skeins I've used in the past.  But since it requires so little yarn, I thought it would be okay, especially since I can use the rest to make tarot bags or bags for crystals and such.

It's cold, windy and rainy today.  A tree got blown over in the next town but I haven't seen any damage around here.  Hopefully tomorrow it will warm up.  We're thinking of going to Hobby Lobby tomorrow although I hate shopping there.  Still, knowing that what we make will be sold to Pagans sort of makes it better.  I want to look at jewelry making stuff, and tools to use while working with clay.  I might not buy anything yet but I want to get the trip out of the way while I'm still "down" with this pneumonia.  Hopefully by next week I'll be able to get up and around.  I have an appointment with the dr on Tuesday for a follow up.  Hope I pass.

I'm going to bed now to knit and read or maybe even just sleep.  The good news is that I'm sleeping a lot lately.  No bad news that I can think of except I'm still short of breath whenever I exert myself at all.  But as I'm coughing more and better I hope that will change by next week.

Off to put on my jammies and crawl under the covers and get cozy.

Tuesday, April 9, 2013

She's not ready to leave yet

My mother is still with us.  It's been 13 days since her last dialysis and although she's slipping off into the next world, she still seems to want to stay here for a while longer.  I haven't worked on her shawl the past couple of days.  I look at it, next to the computer but I have no energy left to work on it.

I haven't done much on Robyn's sock but I will work a bit on it tonight.  There's no deadline or anything so I'm not feeling pressured.  I haven't had a lot of knitting mojo during this pneumonia.  I just haven't had the energy for it.  I have enough for both sisters and Robyn.  My niece has been remarkable with the time she has spent with my mom during her illness. 

I got some books from the library yesterday and read two of them last night.  I wasn't in the mood to knit and didn't feel like watching tv so I read.  I will admit I skimmed a lot on the second book because there were parts that were so boring I couldn't be bothered but I still have two more books to read.  These I will read more slowly so I can enjoy them more.

I haven't done any writing the past few days because I had the taxes to do (finished them today) and with my pneumonia (and head cold on top of it) and my mother on my mind I just haven't had the concentration but I do hope to get the laptop out and get back to it soon. 

Tom is exhausted from all the hours he's put in.  He'll be taking a day off next week for his birthday and wanted to get out and do something so we are going to take a day trip to Circle Sanctuary west of Madison.  At least that's what we planned.  We'll see how tired he is by then.  He barely spoke today before he left for work.

We're in the middle of a monsoon and flood watch.  We are safe here because we're near the top of a hill but our basement does accumulate water a bit.  We have two drains so it won't flood but there are some low spots that I will have to squeegee later. 

Zach has been sick the past couple of days with a really bad sore throat.  I think he peaked this morning because he's been feeling better this afternoon.  I hope so.  He has an eye appointment tomorrow.

Well, back to bed.  Not sure about supper tonight.  Maybe just soup since I'm still pretty tired a lot and anything left to fix would require a lot of effort.

Sunday, April 7, 2013

Hoping to see the end of this pneumonia soon

I'm getting really tired of this pneumonia.  I keep moving forward and then backward.  Two days in a row I woke up wheezing and very short of breath then today no wheezing and only mildly short of breath but I've been coughing pretty steadily for the past two days.  And today.  I know I didn't cough enough early on in the pneumonia so I'm still trying to get it out of my lungs.

My mother is still with us although her alertness has waned and she sleeps a lot or talks to people who are no longer in this realm.  I think the veil has become so thin that she does see them in her room with her.  They keep saying she shouldn't still be alive.  It's been 11 days since she stopped dialysis.  I think she's always had some kidney function left and that's why she's still alive.  It's not that I don't believe that things happen outside the world of reason; I just think reason has to be looked at first.

Another reason I didn't sleep well last night was because I've been listening with one ear all night long, waiting for the phone to ring.  The more time passes, the more likely that call is going to be today.  Or tomorrow.  But it's inevitable.  We're not looking at maybes anymore.

I'm still working on her shawl although I know she'll never wear it.  I'll donate it to some place of care for the elderly or sick so that someone else can benefit from it.  I'm knitting good intentions into it, hoping that whoever ends up with it will feel the love and care that went into it.  And maybe a part of my mother will be there to comfort them.  She was very good at that with the people she gave of herself to in her church.

And I am making progress on R's socks.  I've turned the heel and am working on the instep now, decreasing to the correct number in two different shades of pink.  Very subtle differences but it looks nice in the jaywalker pattern.  I'm going to knit a pair for both my sisters, too, in honor of the work and effort they have done in maintaining a vigil over our mother in her last days.

But I am really tired now so I'm going to go lie down and maybe even fall asleep.  I have to do the taxes tomorrow even though my mind is still a jumble from thoughts of my mother and still feeling under the weather with this pneumonia.  But if I don't do them, they don't get done so I've got no choice.

Thursday, April 4, 2013

The venture

According to the updates I'm getting from my brother-in-law Mom is probably entering the beginning of the last phase of her life.  She sleeps, wakes, seems to spend time with people who aren't really there but is waiting for her vigil to end so she can be at peace.  The dr is amazed that she is still awake and aware.  It's been 8 days since her last dialysis.  A normal person would be in a coma already.

I've been knitting on socks.  I found out my niece doesn't like purple so I frogged the socks and am knitting them in two subtly different shades of pink in the roadrunner pattern. I don't have a link because the site no longer exists.  I just had the pattern in my stash from ages ago.

I was working through my panic today.  I've always had an obsessive fear of failure that has prevented me from even trying anything new in life.  The only time I ever burst through that barrier was when I joined the Navy.  But as I got older the fears returned and I've been unable to finish anything.  That's my biggest fear now, that I will have invested this money and will crawl back into my hole and not even try to succeed.  Tom seems to have faith in me but he does understand that I am so afraid of wasting the money we just invested.  Still, he says it's worth it.  Hard to believe someone has more faith in me than I have in myself.

We're going to the library tomorrow to find some books on wood-carving and working with polymer clay.  I'd like to branch out and start doing more than knitting.  It's a long time before we expect to see a pay off to the investment and there is much more investing to do before we're at the stage where money comes back in.  I don't mean to be vague.  Zach and I are starting up a business together selling things we've made but we've already decided that we don't want it to be an internet business so we're working now on accumulating an inventory of our products.  Various things, a lot to do with paganism. 

But we're also writing a book together.  I think that scares me more than anything else.  We invested in a lap top because the computer is in a very busy spot in the house and there is no way I can write here.  I used to write all the time.  I wanted to be a writer since I was a little girl.  Art holds my heart as well but writing was my first love.  I got discouraged by so many people telling me I couldn't write or who threw away my writings or flat out told me my stuff wasn't very good but that the person saying it could fix it for me.  So I'm trying to overcome a lifetime of negativity and finally do it.  The lap top will also be used in the business so it's only being used for that.  Not for going online to read blogs or anything else.  Just the business.

Zach is going to go back to school and take some business courses starting this summer, most likely  The details really terrify me and my heart thumps every time I think of doing this.  And it races every time I think of the money we spent on the lap top.  It's not an expensive model but when you've got little money anyway, any model is expensive.

I did get some writing done today.  Probably about 3 hours.  I need to write for more hours a day but I was tired when I woke up...still a bit of breathlessness from the work I did yesterday. I used my inhaler and got to coughing and felt better after that but I'm sure it's going to take time.  So I took it a bit easier today.  Mostly just sitting and writing.  I worked on a book I had started several years ago, started a short story and did some stream of consciousness writing.  I saw a documentary about it and found out that many famous writers do this every day.  It sort of primes the pump of inspiration.  And since my well has been dry for decades, I definitely need that pump primed.

Well, fixing supper now so I must go.  I'm going to get to bed very early tonight.

Wednesday, April 3, 2013

Leaving us bit by bit

My mother has been a week out from her last dialysis treatment but is still alert and responsive although she sleeps a lot more and is considerably weaker.  I find myself listening for the phone all night long.  She's in palliative care labs and her meals are brought to her room.  Fortunately she's in a single room so her roommate isn't being inconvenienced by the hundreds of people coming to say good bye to my mother.  She has been a rock in her church community for more than 60 years and has made a lot of friends.  I'm told she's spending more and more time "there" instead of "here" as people do when they begin their journey through the veil.  She looks out the window and stares into space, sleeps a lot more.  It's part of the process but one she must do alone.

I'm feeling much better, able to breathe and function again.  I'm nearly out of albuterol and the steroid spray is completely out.  I'll make an appointment next week to see the dr for follow up.  I've just got a lot on my plate right now.  I'm still a bit breathless when I exert myself but it's mild and similar to taking a brisk walk.  No gasping for breath at all...just some mild puffing.  Occasionally I wheeze but only occasionally.

I was able to get some cleaning done today.  It's taking me a long time to clean one room but I don't want to go nuclear and then end up back in bed for a week like I did last time.  If it takes 3 days to clean a room, then it does.  I'm finishing up fixing supper right now and then I'm done for the night.  Zach is doing laundry so I am cooking.

I started the socks for my niece and found out she doesn't like purple so I'm going to use the two pinks I have.  There is a slight difference in color so I think the jaywalker pattern will be effective in showing off the subtle striping.  Maybe even better than the pink and purple.  So S will get the purple socks and R will get the pink ones.  And I have some brown left over for me.  Plus I can use what's leftover to make some crazy socks for me, too.

Zach and I have started a venture together and today was the day we committed to it.  That means we actually sunk money into it.  We don't expect a return for a couple of years but you have to start somewhere.  I have needed to find a career path that would work for me staying home and he's had trouble even finding a job in fast food so hopefully this will lead to some income in the future.  Nothing dodgy and nothing "internet" although we will certainly use the computer when we need to.  He's going to continue his education in the meantime but it would only enhance the business we're starting together so...

Well, I'm nearly done with supper so I think I'll sign off and get into my pajamas and curl up with a good book tonight.