Tag Archive | pneumonia

I’m Sorry… An Open Letter to My Followers

 

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

Hello Dear Readers,

I can’t believe it has been so long since my last post.  I thought about writing to you.  Every. Day.  I began posts that I never finished.  I had things to tell you.  I took a notebook to my appointments and filled page after page with thoughts meant for you over these long weeks months (gasp!) apart.  But I just couldn’t.  Share them.  Here.

It’s difficult for me to admit that things have been just plain crappy.  I’ve had infection after infection (pneumonia, kidney, cellulitis).  Super antibiotic after super antibiotic.  And I have zero energy.  Just getting out of bed each day has been such a struggle.

I’m beginning to think that if I don’t tell myself repeatedly on a morning that I don’t have a choice, I may not be able do it.  I am no stranger to forcing my body and mind to push on when they are begging me to just rest.  But pleading is being replaced more and more by screaming on the part of my exhausted body and mind.  And sometimes I am met with absolute refusal.  There are times during the day, or especially in the early to late evening, when I am just hit with insurmountable fatigue and I must stop, wherever I am, and lie down.

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

 

This was happening before I was diagnosed.  In the months before I heard the words, “Everything we biopsied was malignant,” I was struck with fatigue like this.  The kind of fatigue that stops you in your tracks.  The kind of fatigue that lets you know that if you don’t find a place to lie down and sleep immediately, your body will find one for you, be it a bench or a chair or a carpet or a patch of grass.  Your body doesn’t care about the where.  It will drop you anywhere.

This happens about once or twice a day now.  It’s usually after I’ve been up and out for appointments, etc.  By the time the kids get home, have dinner, and I help with homework, it has already been creeping up on me.  And then I just hit a wall and cannot do “it” anymore — whatever “it” may be.  Not for another minute.  And I go to the couch, drop down, and cannot move again.  It takes a great deal of cajoling to get my body to take me upstairs for bed.  Brushing my teeth seems an insurmountable task.  I just need to crawl into bed after the exhausting trip up the stairs to my room, and fall asleep.

But it is happening earlier in the day, too.  A few days ago, I went to an appointment in the morning and had to lie down in the car afterward and cancel my afternoon appointment.  And when I finally made it home, I had to lie down and couldn’t move again until the kids came home and I convinced my body that it no longer had the luxury of resting time.  But after dinner, I had to lie down again.

I don’t know if I’ve told you this before, but this is not normal for me.  I can usually push, push, push, until everything is taken care of, everyone is in bed, the day is done.  And then I will lay awake for hours, waiting for sleep to come.  And it eventually will, but sometimes not until the birds are beginning to stir outside and I know that the faint early morning light will soon creep through my velvety merlot curtains.  And just a few hours later, it will be time to get up with the kids and for the school routine to begin before I head out the door myself.

Well, that “normal” is long gone…  This hasn’t been happening for months now.  Now, when I hit that metaphorical wall, I will drift in and out of sleep.  Sometimes just until the dead of night.  Other times it is until the dawn begins to break.  But I just can’t stay awake without a major effort.

I do wake frequently.

I was experiencing night sweats “before.”  During the worst of the chemos.  And then ever since my radical hysterectomy and salpingo-oopherectomy two years ago.  But the hot flashes and night sweats that spiked when I had to have my my surgery two years ago had begun to wane (well, somewhat, anyway — when I say “wane,” what I really mean is slip down to a more manageable number/degree, if there is such a thing) about a year ago.

And now… They’ve ramped up again with a vengeance and have become far more intense and overwhelming than what I had been accustomed to, even when they were at their worst.  They have been even more overwhelming and exhausting in the past six months than they were in the first year without my ovaries.  I am waking about three times a night now just completely drenched.   So much so that I need to change whatever I’m wearing each time.  And it doesn’t matter what I’m wearing.  Flannel head-to-toe pajamas — drenched.  A soft robe — drenched.  A cozy sweatshirt and sweatpants — drenched.  Yoga pants and a light top — drenched.  A thin t-shirt and undies — drenched.  Just the undies — drenched.  It really doesn’t matter.  I will often lay a blanket down in the bed to cover the soaked bedding and to give myself a fresh start for the night.  And then I’ll do this maybe twice more per night after each soaking.

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

I’ve tried everything I can think of to curb the frequency or intensity of the night sweats, but nothing helps.

And then every day I find myself breaking out into cold sweats.  My face is dripping with sweat.  Drops of sweat roll down my legs and arms.  And then I find myself shivering and needing to change my clothes because I am so, so wet.

Sure, this happened before.  To a degree.  Surgical menopause at 35 will do that to you.  Or at least that’s what it did to me.  But this, this is so much worse.  It doesn’t feel normal.  So far from it.

It’s concerning and exhausting, to say the least.   I’m hoping (I think?) this increase in frequency and intensity might have something to do with the fevers I’ve been experiencing on a now regular basis over the past six months?  But then, what is causing the fevers?  Sure, I’ve had lots of infections.  But I’ve been on antibiotics consistently, with breaks of only a couple of days, if at all, between.  So it’s unclear as to whether the fevers are linked to the infections.

Sometimes I’m glad I’m too tired to expend the mental energy to think about it!

Well, this has become more of an explanation post than an apology letter.  But I began intent upon focusing on the apology.  Because I do owe you an apology.  You’ve stood by me, reading, commenting, emailing, or sending messages in some other way.  And I haven’t been the best with the communication.  Okay, I’ve been downright shitty, really.  But it is not because I haven’t thought of you.

It is not because I haven’t appreciated you.

It is not because I haven’t wanted to reach out to you.

It is just because.

I wish I could say or do better than this.  But I will try my best to give you what I can, when I can.  And I sincerely hope you’ll continue to reach out to me as you have been.  Because it has meant so much to me.

Even when it doesn’t seem like it, I am listening.  And I am grateful to know that you’ve thought of me, even if it is just a fleeting thought.   Because sometimes that makes all the difference in the world…

Thank you…

p.s.  Because you know I love to stick photos wherever I can, I’m adding a few pictures that illustrate (at least I think so!) the theme of The Daily Post‘s Weekly Photo Challenge topic for this week.  This week’s challenge asks participants to show readers a “Room” or “Rooms.”  Here are a couple of rooms other than the hospital and Cancer Center rooms above…

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The rooms below are from a visit to “Give Kids the World” with my boys’ best friend and his family.

Give Kids The World

B has Duchenne Muscular Dystrophy and was granted his “wish” by the Make A Wish Foundation and “Give Kids the World” back when he and my twins were in pre-school.

We were fortunate to be able to return to “Give Kids the World” with B and his family recently.  I am good friends with B’s mom.  The boys and B’s brother and sister all get along so well.  And we like B’s dad, too.  So it was wonderful to have some special time with B and his whole family.

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These are a few photos from a visit to a series of special rooms on the campus where each child leaves a shiny gold star containing his/her wish behind…  The ceilings were covered with wishes.  What a moving experience.

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Okay, off to bed.  Thanks so much for visiting.  I hope life is being kind to you…

My warmest wishes…

 

Hello Again…

Safari

Hello dear readers…

Once again I am returning with a photo post after a long hiatus.  I know it is not the ideal way to manage a blog, but it seems to be what I need to do for the time being.

Though this used to stress me out, I am learning to let go a little.  And that is because of you.  From the comments I’ve received from so many of you, I have found that you are forgiving of my infrequent visits and that you’ve even embraced them.  What a lucky girl I am to be able to stop in with some photos of my spirited little boys and my quirky canines and know that you will be here to welcome me back with open arms, to know that you will celebrate the good moments in my life, and to take comfort in the fact that you will offer words of kindness when times are tough.

The past few weeks have been a bit of a mixed bag.  I began to follow up with those of you who left comments on my last post to let you know that the thickening in my chest was likely swelling compliments of the lymphedema that has made its way beyond my arms and into the area where my breasts once were, but I never formally posted about my appointment.  It was a bit of a blow to discover that it was likely an extension of the lymphedema, but MUCH less of a blow than a cancer recurrence would have been.  It’s amazing how cancer puts everything into perspective!  I never would have thought there would be a circumstance in which I’d “welcome” an advancement of my lymphedema, but here I am!

[If you would like to know more about what lymphedema is, what causes it and how it is managed, stay tuned — I’m working on a post that will deal with this important topic.]

Just after that last post, pneumonia came knocking and, as you can imagine, it has been difficult to come back from.  On a positive note, though, I had a nice Thanksgiving break with the boys.  I spent most of Thanksgiving day preparing a turkey with all of the fixings.  I was pretty exhausted, but I’ve always enjoyed roasting the turkey and making Thanksgiving-y foods, so it was a labor of love.  Still, the day itself was a bit sad.  It was an unusually quiet holiday this year.  My in-laws had just gotten on a plane that morning and we had visited them night before, so we weren’t going to be going to their house on Thanksgiving Day.  And we were also not honoring the tradition of spending the other half of the day with my side of the family (usually at my aunt and uncle’s home) because we were missing some very important members this year.  I lost my youngest sister to the Alaskan wilderness (and her Alaskan boyfriend) when she packed her suitcase and got on the plane for a 5-day trip to Willow, AK in February.  5 days has stretched into 10 months because she has yet to return!  And the sister who had always been within minutes of me since she came home from the hospital when I was two years old, moved to Virginia to follow her/our dream to be near the sea.   She and my brother-in-law and my only niece and nephews hugged us goodbye as they drove away in their minivan and a big moving van during the first week of July.  And, sadly, they have not been back and my husband will not allow us to go to visit them (which the boys and I were pushing our hardest to do over the long Thanksgiving school break).  That leaves one sister [I am the oldest of four], but she and her husband [who is not a giant meanie like mine] went down to VA to spend Thanksgiving with my sister/BIL and the kids.  So it was VERY quiet.  My mother came over to eat with us and brought her little Yorkie.  The boys helped me decorate the table with our Halloween lights so we dined by the lovely saffron glow of the twinkly pumpkins we’ve collected over the years.

Thanksgiving

Thanksgiving

Then on Saturday and Sunday we took a quick little road trip to Pittsburgh, Pennsylvania.  Though the kids did their best to cajole my husband into allowing us to go to Virginia to seem my family, he made it clear that it would not happen now or ever, so we ended up “compromising” with Pittsburgh.  We had never been there but had heard that the city had a wonderful children’s museum and science center, both of which we have free admission to because of a reciprocal partnership between our local science center and other museums around the country (including those in Pittsburgh), and we also had a free hotel stay there.  Though the boys and I were sad about VA, we knew that it wouldn’t help to be upset about it, so we were determined to enjoy the weekend.  Though I would have been content to spend another “sick” weekend curled up under the blankets with the boys and dogs, I was the only one who would have gone for this over the long Thanksgiving weekend because the “sick” weekends had just been piling up with no end in sight.

Though it was tiring, I am glad we did it.  As it turned out, I had plenty of time to rest.   We only spent a few hours at the Children’s Museum on Saturday and then The Carnegie Science Center on Sunday, and we got home fairly early on Sunday.  And I just read during the roundtrip drive.  The hotel also provided board games, so we played Sorry! after the museum closed at 5 on Saturday, and then I was in bed by 9.  It was actually pretty relaxing.  At home, unless I am pretty sick, I have a hard time with giving myself permission to really rest.  For some reason it was much easier to do this while in another city or during the long car ride.   And the Children’s Museum was excellent.  There were plenty of activities to keep the boys engaged.  Our favorite section was an art annex of sorts.  The boys and I sat for ages at a long table cutting shapes that they could take up to a screen printing station where our designs would be printed.  I did the cutting and they would take the shapes up to be printed.  We made a nice stack of art that we plan to decorate their room with.  They loved the idea of stringing the pictures we made up on a long twine clothesline with old clothes pegs that were once my grandmother’s.  That will be our next project!

William enjoying one of the activities at The Carnegie Science Center in Pittsburgh, PA

William enjoying one of the activities at The Carnegie Science Center in Pittsburgh, PA

The Science Center was a bit more difficult for me.  But there was plenty to keep the boys busy.  And there were a plethora of benches and even some comfy chairs for me to sit in and even lie down on!  It really was chock-full of activities and displays.  We were even able to enjoy a star show (also free!) in their cozy planetarium chairs, located right inside the science center.  And the boys participated in some cooking demonstrations (free, too — and with samples!) in the “kitchen” section of the center.  Yum!

Yay! for The Carnegie Science Center's comfy chairs!

Yay! for The Carnegie Science Center’s comfy chairs!

And then we were back home to our dogs Sunday night, and I was back in to the hospital Monday morning to start off a full schedule of medical appointments this week.  But it was nice to have a change of scenery for a weekend!

Wow, I’ve written far more than I intended and I haven’t even gotten to the photo challenge yet!  Rather than muddle the photos up with all of these words (which have little/nothing to do with the challenge!), I’ll post a separate photo challenge entry in a minute.  I’ll also be requesting your help with a little something in the next post…

See you in a few…