Thursday, June 14, 2018

Not The Boobies!

Part 1 - 5 June 2018

As most everyone knows by now, I had a breast reduction on September 1, 2017.  It was a pretty drastic reduction, but was deemed medically necessary because of the pain it was causing my back, shoulders, neck, skin, etc.  I was excited to get it done!  The surgeon, Dr. Coster, assured me he wouldn’t go too small, since I felt it was a part of my identity.  However, immediately after the surgery I was extremely unhappy with the results.  The pain from having large breasts was gone right away, but I felt he went WAY too small.  He again assured me that with healing, they would settle and be exactly what I wanted.  I had no choice but to take his word for it.  As the settling of my breast tissue progressed, it felt lumpy and bumpy and sometimes painful.  But overall, it wasn’t a terrible process.  I must say though, still not too thrilled with how small he went, I would have been happy with about another cup size larger.  But there’s really nothing to be done about that now but accept it and move on.

Fast forward to 6 months later, in March of this year.  There was a painful lump about maybe the size of a large marble that was not going away in the top part of my right breast.  I made an appointment and talked to Dr. Coster about it, and he told me it was still settling breast tissue, and not to worry too much about it.  But it didn’t go away.  And it continued to be painful.

In April I had an unrelated illness, a tonsil infection, for which I was given 3 weeks of antibiotics and steroids for the inflammation.  To my surprise, the lump in my breast went away as the tonsil infection went away.  I really didn’t think much of it until the steroids and antibiotics were done.  About a week later, the lump in my breast came back.  I made an appointment, and in the 4-5 days it took until that appointment date, the lump quadrupled in size and became much more painful.

Still, when I saw the Dr. Coster toward the beginning of May, he told me it was just settling breast tissue, and I explained what happened with the course of treatment I had for my tonsil and stressed the pain and concern I had.  So he gave me some stronger antibiotics.  They did no good, so after a week I was prescribed the same antibiotics I had been on for my tonsil.  So another week later, the antibiotics had not worked, and he did an ultrasound.  He found a pocket of fluid, and aspirated some of it with a needle (NO fun at all, I say!!).  He sent me home with more of the same antibiotic and low-dose steroids.  It started to do a little better with the steroids, but as the dose decreased, the swelling increased again.  No relief.

1 day before my next appointment I got a call from the nurse saying the fluid they aspirated had been sent to the lab and cultured.  The nurse said the result was a super-rare bacteria in the same family as Tuberculosis.  She said to keep my appointment and the surgeon would explain in more detail and discuss treatments during that appointment.  So yeah, if you know me, you know I want as much information as possible for whatever new thing happens to me or a loved one, medically.  Science and medicine fascinate me.  So I scoured the internet for information about TB-type infections of adipose tissue (fat tissue).  I found a large number of options of what the infection could be, looked up case studies, and went to bed that night knowing this would be a very long process.

The next day at my appointment, Dr. Coster told me this was a non-tuberculosis atypical mycobacterial infection.  That is basically a long way of saying this is a very, very stubborn and medicine-resistant infection that will take anywhere from 3 to 12 months or more to heal with the proper antibiotics and the potential for surgery to remove infected tissue.  Seems it has a slightly rising occurrence in post-surgical patients, but usually with breast augmentation rather than reduction.  No known cause other than just environmental exposure.  He had only ever seen one other case in his entire career, and he’s a pretty experienced surgeon.  He also said NO PREGNANCIES because nothing about the treatment is pregnancy-safe.  He gave me two antibiotics which have some pretty severe possible side effects – Ciprofloxacin and Clarithromycin, and this note.

It says: Go ahead with Clarithromycin, Stop trying to get pregnant, Once you have a negative pregnancy test, add in the Cipro.

This was on Wednesday, May 30th.  Jarrod and I had been actively trying to get pregnant, so there was a very small chance that I could have conceived during the 2 weeks since his vasectomy reversal.  I took an early-detection pregnancy test that day, being only a couple days from my expected period, and it was very clearly and plainly negative.  So I started taking both medications immediately.

As of today, 6 days later, there has been no improvement.  The lump is a little bigger, and now takes up about 1/3 of my entire breast.  It is painful, and I can no longer go without wearing a bra to bed, which is miserable for me.  My skin is discolored where the lump is, and without the medical knowledge of this possibility, I am concerned this infection will come through the skin.

I have an appointment with a specialist at the Center for Infectious Disease tomorrow (Wednesday), and hopefully he will have answers as to what medications will certainly work.  Hopefully the lab culture results have come back to show what medications this bacteria is sensitive to, and we can hit it hard and kill it!  At this point I am open to anything, even surgical, to get this gone as fast as possible.  Neither Jarrod nor I want to wait an entire year or longer to get pregnant, considering our ages and the financial and emotional investments we’ve made in our reversal surgeries.  But I know being healthy first should be my first priority.  I just want this bacteria out of my body!!!  It’s not welcome here, dammit!

It is also very important to mention here that Jarrod has been amazing through this all.  In our 9 months together, he has been there for me through my tummy tuck and breast reduction, a couple nasty tonsil infections, of course my tubal reversal surgery, and now this.  Seems I just can’t stay healthy these days.  But he is absolutely amazing, supportive, helpful, and always listens to my rants and anxieties, and puts up with my ridiculous amount of intensive research that is admittedly entirely excessive.  He’s the absolute best husband and best friend, and I don’t know what I would do without him by my side.

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Part 2 - 14 June 2018

….to continue this infection “adventure”…

I went to the Infectious Disease specialist, Dr. Kumar, and he noticed right away how knowledgeable I was, and how much research I had done on my own.  In a way, I think that helped him communicate with me.  He was showing me scholarly articles that I had already read on my own to better explain my situation.  Jarrod and I both agreed it would have been a bit more encouraging if he had just been able to tell us the information rather than site articles, though.

Between Dr. Kumar, Dr. Coster, and another doctor, we worked up a plan to get rid of the infection the safest, hopefully fastest way.  But it won’t be pretty:  After showing improvement with the 2 antibiotics, it was decided to bring it down to one for safety, removing the Cipro.  I continue to see gradual improvement with just the one, and it has been a week since it was changed.  Next Thursday (a week from today), Dr. Coster will surgically open and debride the infection, removing all fluids and infected tissue, and then leaving the wound open to heal from the inside out.  This is to eliminate the environment where the bacteria are thriving, and make the single antibiotic as effective as possible.  (Don’t worry, I won’t post photos.)  Once the open wound has healed entirely, and the infection is 100% healed as well, Dr. Coster will then surgically remove the scar tissue and make my breast cosmetically correct again.

My estimated treatment will be approximately 6 months long.  I’m hoping though, with the slight improvement I’ve already gotten, that I won’t have to be on meds that long.  I hope it heals faster than that.

Another piece of this puzzle won’t be figured out for a few weeks yet either.  We know I have the rare atypical mycobacteria infection, but we don’t know which strain or which medication it is most sensitive to.  Those tests take about 6 weeks to get results back.  Once those results are back, perhaps I can be on the one antibiotic that will knock this out the fastest… still hoping for a quicker recovery.

But I know these things take time.  I’m trying to keep myself out of the intensive research and anxiety, keep my eyes on the light at the end of the tunnel and the wonderful man supporting me, and remember this too shall pass.  I have a great team I’m working with, and this will get better.

Also posted on HesseLane.life.

Monday, May 28, 2018

Chaos Follow-Up

I know it's about time for another blog post.  But honestly, not a lot has been going on that I've really gotten inspiration from to write.  So rather than write a story about something in my life, I'll just give a little update as a follow-up to my last post.

Evan came home from the inpatient psychiatric unit that was hours away with new medications, and they had discontinued everything he had been on.  They seemed to be helping so they considered him stable.  However, today was the first day in a week that I saw reasonable behavior from him.  He has been angry, resentful, and very distant since he's been home.  He has been so unstable in fact, that my mom and I had to cancel our Florida vacation for now.

Evan, when I picked him up from the hospital.
I have decided to apply for residential, long-term psychiatric care for him, and have already gotten all of the paperwork filled out, including referrals from doctors and therapists he's seen.  I will be faxing it tomorrow, with a 6-8 week waiting list ahead of us.  I have known that he has needed long-term care for a while now, but I hesitated to send him because I don't want him to feel like I'm giving up on him.  But I feel he's old enough now to listen to my words when I tell him this is NOT be giving up on him.  It is the exact opposite.  I truly believe this is his best shot at having a productive, normal adulthood.  I want what's best for him, and if this helps him, I will be forever grateful for the help.  If it doesn't help, at least I will know I've done everything in my power to help.  I am certain it will help him though.  He will learn more coping skills for dealing with everyday stressors, perhaps professionals will see an outburst or two so they know I'm not exaggerating, and they will treat him as a whole person instead of just a handful of symptoms.  I look forward to having him go through the treatment and coming home a changed young man.

As far as what was going on with the girls, a big part of it was the fact that the two youngest of the three are moving in with their mom once school is over for this year.  Autumn and Willow will be moving (an hour and a half drive away) at the end of this week.  They will be back and forth, every other week for the summer.  Then they will only be with Jarrod and me for visits thereafter.  Jarrod and I aren't taking it very well, especially not him... but I can't get too into the details on a public blog post.  I'll just leave it at: we're very disappointed and sad to see them go.

Yes, Jarrod and I went to Oklahoma and he had his vasectomy reversal!!  It was a success, and we are already trying to make it work, this being my first cycle.  He has been procrastinating writing a blog post about it, but I know he will get around to it, so I won't share too many of the details.  I will say though, that it has been nearly 13 years since I had even the slightest chance of becoming pregnant.  It's a weird, oddly freeing feeling.  We both cannot wait to have a baby! 

Vasectomy Reversal in Gibson, OK
Bed & Breakfast in Muskogee, OK
The lump or swelling in my breast: No solution yet.  The first antibiotics didn't work, so he switched them.  That didn't work so he did an ultrasound and found a pocket of fluid.  He stuck a needle in it to take some of the fluid and have it analyzed (no results yet due to a holiday weekend).  He continued the antibiotics with some low-dose steriods.  That started to work but then as the steroid dose decreased, the lump increased in size and pain again.  I see the doctor again in 2 days, and we will see what he says.  I'm pretty certain at this point that I'll at least need a higher dose of steriods to get this to go away.

Things are calming a little at a time, just before school gets out and we have a whole other world of chaos coming our way - how to entertain kids while still working and living our lives!  LOL.... but certainly, that will just be more for you to read in the coming weeks!

Thursday, May 10, 2018

Absolute Chaos

Generally I like to keep my blog posts and the things I share positive, up-beat, encouraging.  If I can't be positive, I'm at least more factual and sorta leave most emotion out of it...nowadays anyway.  I don't generally add too many details and try to keep our lives pretty private.  But this last week has been nothing but chaos, and I need to reach out and also vent!  So here come the facts, details, and emotions right along with them.  For the sake of this post, and the respect and privacy of my husband and his girls, I will not be discussing their business, which is also a big part of the chaos.... I will only post about mine and my boys'.

The school year is coming to an end and the kids are about burnt out on school work for the year.  They're getting restless and ready to have a nice, long summer break.  So it's only expected that some behavior issues will come up in these last couple weeks of school.  They have every other year, and they get dealt with accordingly.

Andy is doing well and there has been no issue with his behavior besides the typical teenage attitude and wanting to pretend rules don't apply to him.  But he keeps to himself for the most-part, isn't an overly-social kid, and is happy to read his books or watch YouTube.

Cory has been doing okay, pretty quiet and also keeps to himself.  Very into a few select mobile games, and YouTube, as well. He doesn't really like to get up and do much of anything, so that is definitely something we need to work on.  Even if it's just a walk around the block once a day!

Evan had been doing much better - though he has suffered from lifelong bouts of rage and uncontrolled anger.  He was finally on some meds that were helping and seeing a therapist regularly.  The therapist had been reporting to me that he had been engaging and doing well for the first time.  His grades haven't been great, but his behavior has been acceptable at school, so that was definitely and improvement from last year.  He's had a couple moderate tantrums in the last couple months, but Sunday night he went all-out rage...

Cory and Evan share a room.  And about an hour after they went to bed, I was outside with Jarrod and we both heard them screaming at each other.  I came running into the house to find that Evan was just tapping and annoying Cory.  Nothing worth raging or screaming over for sure.  But I explained twice to them both that since they share a room, they need to be able to have respect for one another, and not make noises that annoy each other, especially at bedtime.  Evan continued tapping.  I told him if he wanted to continue to be disrespectful, I would take away his electronics privileges for a week.  He didn't stop, just continued while glaring at me.  So I said ok, 1 week.  He screamed obscenities at me (also VERY off limits to speak to anyone that way, but especially parents).  I said ok, 2 weeks.  He screamed worse obscenities.  We went back and forth until I got up to 2 months, all the while I was staying calm (miraculously).  He then, rather than screaming, kicked his pedestal fan into the TV he and Cory shared.  I said really Evan, you're going to break another fan and the TV?  So he got up out of bed and bashed the TV with the fan on purpose until there was a hole in the TV screen entirely.  Then I called the police to come calm Evan, or possibly take him to the ER for psych treatment.  Then.... he threw a piece of the broken fan at me.

**Let me take a moment here to say in all the years he's been having these extreme tantrums where he breaks things and throws things around, he's never intentionally hit me with anything but a pillow.  Ever.  He's jumped up and down on fans, his belongings, he's thrown things through walls, punched and kicked through walls, broken doors and door frames, torn up papers and cardboard, and much more.  But he's never gotten physically violent with me.**

So, this time, he threw the heavy base part of this fan directly at my head.  I deflected it.  Then I grabbed ahold of him to restrain him because I could tell he wasn't done attempting to hurt me or break things.  I wrapped my arms around from behind him so as to hold his arms down and keep him from breaking anything else or hurt me or Cory.  He used his right hand to reach over his left shoulder and try to grab my throat.  That didn't work.  So he tried biting the arm that was around the right side of his chest.  That didn't work.  So he tried faking suffocation, which I didn't believe for a second because I'm not that heavy anymore.  When I told him I didn't believe him he crawled away with me still wrapped around him, and tried head-butting me by throwing his head back violently.  I tucked my head into the back of his left shoulder, so that didn't work either.  But all this while, he was inching closer and closer to the fan pieces, and I knew there was a heavy metal pole in the middle of it all.  It was all I had in me to keep him back from that, and when I thought I might lose grip, I screamed for Jarrod who was entirely unaware of what was going on.  He had been outside putting out the bonfire we had been enjoying previous to this incident.  He came running in just as Evan grabbed my phone and threw it against the wall, and it bounced.  Jarrod told me the officer was there, and let him in.  I was able to release my grip on Evan, and the police office talked him down.

I was shook.  Never in my life have I been in a physical altercation with ANYONE, let alone my own 13-year old son.  Never have I ever had someone try to physically harm me.  I was emotionally hurt, confused, scared for his future now that he'd done that to me, and conflicted.

After a few minutes the police officer came around the corner into the room I had gone into and told me Evan was calm and that he was going to leave now.  I corrected him by saying Evan was absolutely not allowed to stay in our home anymore.  That this was not the first time he had an extreme meltdown, and with the added physical violence, I no longer trusted him.  The police officer tried to pooh-pooh my story and reduced it quite a lot, telling me he only handled criminal concerns and he didn't consider this to be breaking the law!!  After more pushing, the officer agreed to escort Evan to the local ER for psych placement.

Once I met them at the ER, the doctors and nurses dealt with Evan on their own, not allowing me to go back and be with him, which I was very okay with.  I really didn't want to be around him at that point, and was very close to pressing charges and sending him away.  But I hesitated.  I cried about hs life being ruined, and decided rather than see that he's thrown into a juvenile detention center, I wanted him to get help.  He's usually such a loving, caring, intelligent, active and awesome kid.  He's a totally different person when he's in a rage.  So I firmly stated I wanted him to have a psych placement.  He stayed in that ER from Sunday night at 10:30 pm until Wednesday afternoon at 4:00pm waiting for a bed to open up at a psychiatric facility for adolescents.  He was in a tiny room with a gurney and a medical tray for an end-table.  A window in the door, and nothing else.  Over the days I took him a couple books, a blanket from home, and sat and watched a little Netflix with him.  But he was mostly alone.

As of yesterday he was admitted to a psych unit nearly 3 hours drive away from home.  I met him there once they said they would transfer him, and got all the admission paperwork filled out, only to find out their policy is to "evaluate and stabilize."  Meaning he will be inpatient for 3-5 days and then sent right back home.  I was very upset by that news.  Not only is it a very long drive, and he's very far from home, but he won't be there long enough for them to even see any range of emotion or mood swings from him.  It would likely take weeks or a couple months for him to have a full-on rage like that around new people.  So they will never see what I see.  And in turn, he will never be treated accordingly because for some reason the professionals don't like to believe me, though I am always very straight-forward with the facts.

Evan in the ER waiting for psych placement.  He was in pretty good spirits once his rage passed.
So far, I have gotten a call this morning saying they are discontinuing all his meds and giving him entirely different ones.  They are giving him medications specifically for mood issues and anger.  I know what they are, and exactly what they treat, but I'm not going to share those details.  But I will say I've been suggesting this type of treatment for about 4 years (and he's been having rage issues since he was 4 years old), and I feel it's about time someone caught on!  He will come home sometime next week and I'm very curious to see what kind of improvement these medications will make with him.

This is his second admit to inpatient psych care, the first of which was last August.  If this comes up again, I will be looking into long-term care.  In fact I'm already working on lining it up for when we need it.

The chaos doesn't end with kid stuff.

Jarrod and I are also less than a week away from driving to Oklahoma for his vasectomy reversal.  So we have that trip and his recovery to look forward to.  He seems to think he will be able to work shortly after, and I'm begging him to take at least 3 days so he doesn't damage the work the surgeon will be doing.  I'll be stepping up my hours if I can, so I can try to make up for the time he is taking off.  I just want it to go smoothly so we can become pregnant naturally.

Like I said, there are things with his girls going on too that are quite emotionally taxing.  But I won't go into that.  It's just all mixed in with Evan's issues, our travels, and my health issues as well....

Back in September I had a breast reduction.  It was a pretty drastic reduction and some of the risks included losing sensation, losing nipples, infections, and fat necrosis.  All incisions healed well, and I've liked the lack of pain in my back and shoulders due to the reduction in weight on my chest.  However a couple months ago I complained to my surgeon about a lump in the upper part of my right breast.  Its a hard lump and it was a little painful.  He examined it and said it was likely breast tissue that hadn't settled into place yet, and to give it some more time.  I accepted that answer and moved on. 

A couple weeks ago I was dealing with a second tonsil abscess/cellulitis (not sure which or maybe both?), and was on strong antibiotics for 20 days.  (That's a whole story in itself too, we're looking at a possible tonsillectomy if it recurs again). During that time, the lump in my breast reduced quite a bit and was all but gone.  I was happy about that side effect and didn't give it much more thought.  But once my antibiotics were gone, a few days passed and the lump came back.  But it didn't just stop with coming back, it came back times about 10.  It is much larger now, deep, very painful, and causing redness on the skin where it hurts.  I went back to my surgeon about it and he put me on stronger antibiotics and told me if it didn't get better, or if it got worse, to call him and we would do an ultrasound to see what's going on in there.  This was on Monday... today is Thursday and it is certainly worse.  I called and told him and he just said continue the antibiotics for now, take Ibuprofen which I was already doing, and use a heating pad a couple times per day.  I really hope that helps, because this very strong antibiotic is kicking my ass!  My whole body is sore and I'm so lethargic.  This lump is scare and quite frankly I'm afraid it's fat necrosis - which would mean another surgery.  I'm so tired of surgeries, and their recovery times.  I just want to be healthy and live my life!!!

And the icing on the cake - next month my mom and I have planned a vacation.  I will be gone with her for about a week.  I'm concerned about my breast needing surgery or some other drastic treatment by then - will I be healed or able to enjoy the beach?  Concerned about Evan's behavior and what sort of supervision I can find for him while Jarrod works, because he certainly shouldn't be left unattended at this point in time.  Concerned about finances even though I think we're okay there, worried anyway about taking time off work... and just not sure if I can make it an actual vacation where I'm not worried about everything that's going on back at home when there's nothing I can do to help.  Plus I don't like the idea of being away from my entire family that long. 

*Deep breath*  l don't know...  Life is crazy right now.  I'd love if things could just calm down, fall into place, I could get healthy, Jarrod recovers well, Evan can get the help he needs and function the way he needs to, the girls could also be in a place of happiness and serenity, and the vacation can just go off as planned.

Thankfully, I have some good support for help with "babysitting," good conversation, and advice with my best friend Amber, and with my mom.  And even though everything is so upside down and chaotic, I couldn't imagine a better husband to stand beside through it all.  We make a pretty damn good team, he and I.  I don't know where I'd be without him.