One Year Later

So thought I would carry on with the last post…

Belize, as I said, was amazing. My husband and I got some much needed ‘us’ time away from everything. I got my sun and he got to release mentally. Belize itself was an amazing experience. We will definitely be back!

After spending a little over 2 weeks there we hopped back to the US to the in-laws. I missed my daughter a lot, but was always at ease because she was in amazing hands, and around people she needs to get to know. Prior to the flight and right up until we walked through the door I had an old fear come back…will she remember me? I know it seems a little silly, but it goes back to something I think I talked about in a post somewhere way back…when I came out of the coma and was finally at a point where I could see my daughter she responded to my best friend…not me. When I got home she responded to my best friend…not me. It crushed me. I could tell my friend was worried about it…but we did talk and I thanked her, to which I think she was fairly surprised at first. I admitted it was hard to see that reaction from my daughter, basically seeing someone else as a mother figure, but that what it told me was that She had truly stepped in…moved a thousand miles and been there for my child…nurtured her as her own…and that is nothing short of an amazing act! None the less, I still have those moments entrained in my mind, and while I am eternally grateful for the people in my life being there in this manner, it still scares me that I have missed so much of her infancy and that fear of her bonding more with another is always present. Part of that is my relationship, or lack there of, with my own mom, and I know it is in my head…I guess it is healthy because it is a reflection of how much I want to be there for her and to be her guidance and go to person.

Anyways, we spent some more time in the southern US…even more time in the sun…YAY. His family is so great to be around. They are all VERY close and have an amazing home, and are just good people all around. I did get to see a scary dynamic though…something I have never witnessed…my husband and his brother…just…just wow! There is always tension there to some degree…I think my husband gets a little frustrated with his brother. The entire family are professionals…except the brother. He is a free spirit. His ambition is finding the next good time…hitting the beach or a party or the next woman in the sack…whatever. Anyways, out of seemingly nowhere they start fighting…and I mean fricken fighting! I have brothers…I have seen fights…but there are 2 guys who are gym nuts and no how to fight. Fists flew…stuff broke…there was blood………………it was just stunning! Still no idea on what actually started it, when I asked they just laughed…2 bloodied men just laughing….looking at each other and saying lets go golf! WOW. I really don’t know what to make of it. In one hand it was funny and kind of awesome that they could shrug it off and then hang out immediately after…on the other hand it scares me on so many levels I don’t even know where to start. Afterwards, when me and their mom were hanging out, she simply said “Yeah, they are like that. They show they care about each other with fists.” Really hard to wrap my head around, because it seems sooooo displaced for this family.

Anyways, since this we have returned home and enjoyed a super early spring. I have been progressing really well and enjoying messing around in the yard and taking kiddo out in the sunshine. Right now everything just seems perfect…tis great. I am probably in the best shape of my life. I have been going mad in the gym and have fricken stunning abs! My blood tests are showing stability for the time being, but I know we are going to have to deal with it all again soon enough. My daughter had a spinal tap (something I simply couldn’t be there for…it was too much for me) and there is nothing over the top. There are some numbers they want to watch and intend to do a couple taps a year. They are saying she is a high risk person for a Leukaemia outbreak, so we are going to monitor it all very close. If something does progress…we want to be all over it. The only thing that has been hampering me of late is that it is coming up on the one year anniversary of my sleep…and that has been causing me to miss out on some sleep…which is probably why I am writing out my thoughts. Basically 2 weeks from now is when it all happened…will be relieving when July long weekend comes and goes!

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Life’s Little Musings

Things swing fast at times. It is amazing how your momentum can swing just as fast!

It has been a crazy start to the new year, with things unfolding at rapid pace the past few weeks, and for the most part, that is pretty good for me on a personal level, and really making me think about things.

The single biggest change for me is I am finally able to get back in a pool, and I can feel it recharging my system with vibrant new energy. It is a sensation I have not had in some time, and it is empowering! It started with just building some general balance, then challenging muscles that have basically sat dormant.  That little bit of challenge to them REALLY seems to have them and my entire body responding.  I am able to walk about a little now, though I am using a walker if it is more than across a room, I can land a hop, and I can climb a couple of stairs!  My energy level has also  made things better at home, as I am interested in more than simply laying around.  We have company and go out for dinner, and just have a better quality of life now.  On a relationship level, we had been a little active, but the bedroom activity has definitely picked up, and that is really good.  I am blessed with a pretty patient man.

My talking voice seems to be getting nearer to normal, though I still struggle with singing, and it still kid of does it’s own thing at times, but really, it is a massive improvement and heading in the right direction!!

So as I started to return to some resemblance of my former life, my papa unloaded something on me as well.  He is considering retirement and wants me to start thinking about whether I want to take over the business or if he should start looking at potential successors.  I had kinda stepped away, but have been kept in the loop, and we had discussed the potential of my return in time, but this caught me off-guard.  I mean it is not shocking that he wants to retire at some point, the man has worked his ass off and has more money than he will ever spend in retirement…he deserves it.  I suppose it is more that it is hard to watch a parent, a man I have idolized and followed in his footsteps look at moving into the “golden years.”  It is a lot to process for me just being slapped with the reality that he is getting up there, but also that I love that company and would hate to see it go to someone else.  Here and now I am really torn.  We have started a whole new thing elsewhere with my new family, but I did love that life.  Lots to think about, but he said it was a few years out still, he just wanted the bug in my ear.  I suppose I need to evaluate the next year or so, see how the Meningitis recovery goes, which seems to be going well, then see where I am at with the Leukemia, plus talk with my husband and see where his career opportunities lay.  All so scary and exciting!

I have also been feeling well enough to start doing some visits to the children’s hospital again.  That is a great feeling to get to share some time with them again.  I met a girl the other day, Jamie, who I spent a few hours talking to.  We got along so well and just had a blast talking.  It scared the crap out of me how much she reminded me of myself when I was 12!  Her dad is a music teacher, her mom bailed when she got really sick, she has battle Leukemia and has gained a bunch of weight because of the meds prepping for her HSCT.  It is like I can read her mind!  I know exactly what she is thinking, because I have been there.  I think we may be kindred souls.  She looks at me and has a hard time believing I was in her shoes…I was and I had the same stance…nobody would ever love me, no guy would ever want to date me, I would never look good…SOOOOOO hard when you are that age…you are going through enough changes and developing and trying to cope with all of that, then THIS is thrown into the mix!  You change tenfold more!  So hard.  But I dug up a picture of me when I was her age, and as she said…if it wasn’t for the smile she would never know it was me.  I told her it is not easy, but battling through this will give her character and an appreciation for life that few others truly have.  She will get to where she wants to be, it will just take time and a lot of effort.  Next time I see her I am going to make her a promise…that when she is ready I am going to help get her there…I will be side by side working with her.

My daughter, well, she changes more and more every day.  People keep saying that she is definitely a mini-me.  Not sure if that is good or bad lol.  She does the cutest thing right now.  She is infatuated with reflections, and he own trips her out a little bit.  We have set this big mirror up at ground level and she will stare at it, then suddenly dodge to the side and look back and giggle, then sit there for like 5 minutes and do it again.  She totally looks back to see if the image is still there lol.  I am not entirely sure if she has figured out it is her, I think she knows but doesn’t entirely know how to process that yet.  I will sit there and point at my reflection an then myself, and go “mommy” to both, then do the same to her, and she seems to grasp that…though she gasps with a massive giggling smile, so who knows for sure!  She also likes to get up close to it and lick the reflection…too funny…and if you say “kissy” she will give her reflection a little smooch.

Looking forward to what the rest of the year reveals.

xox, LGOE

Sleep for Never

I don’t sleep well. I sleep in 20 minute spurts several times a day, then crash hard after several days. It has been a steady pattern.

My husband says that I need to get some help for it because it is not healthy, and I know he is right. I won’t take sleeping meds…I just won’t…so that leaves delving into my mind with a therapist. The thing is I already know why this pattern has emerged…

I am fucking terrified to go to sleep!

Ever since I came to from my coma like half a year back, my big sleep, I have been terrified to sleep. They have given me all kinds of therapy, but I don’t think I really realized the issue, or wanted to admit that I did anyways. I can remember a nurse teasing me about giving me sleeping meds if I didn’t sleep one night and I freaked right the fuck out on her. In reflection I think she meant it as some light hearted humor to encourage me to get a good night sleep, but it was way too soon after wakening. Has that stuck with me? I don’t know. Perhaps it is something deeper…pure terror from the experience. However, ever since that incident everyone pretty much backed off and gave me my space on the matter. Probably good in the moment, but not in the long run.

I am terrified to seek help because I really fear they will put me on sleeping pills to get back into a pattern, and the idea of essentially being medicated to sleep brings me to tears. Perhaps we can talk about my feelings and it will help, but I still fear the end result will be medication, so I keep my mouth shut despite my husband’s encouragement.

I guess I have accepted that it is an issue now. I am at least talking about it, and I guess I am just hear writing this to clear my mind on it all a little bit. I’ll give that some time, and see where it leads me anyways. I don’t feel bad or tired or anything, but I know it is not healthy. I don’t know what treatments I will be undertaking and when for the Leukemia, but I know I have to get stuff balanced to prepare for that.

So much to think about. Perhaps steady sleeping will allow me to process it better. I’m just rambling a little now…just venting…trying to process it all to steady my mind into either releasing concerns so I do sleep better, or prepare to seek professional help.

Recharging Smiles

It is amazing how fast an emotional switch can be flipped isn’t it?

Yesterday I felt empty and at an all time low, and today I feel fricken amazing.

I had been trying to explain how I felt, and trying even harder to figure out why. My husband, the most amazing man on earth and he who make me the Luckiest Girl On Earth, saw it. He knew it. Even though he is thousands of miles away at home while I get this medical care…he fixed it when nobody else could!

But how can one fix something just like that? Well, I guess it is pretty easy when you are him! We were talking about a few things, and he steered the conversation into talking about the house. From seemingly nowhere he says ‘Good news, I found a nice 900 foot slab house and bought it and have accepted an offer on ours, so when you get home you won’t have to worry about a big house and stairs!’ Now ours is a few thousand square feet and on an awesome acreage edging town, so I lose my shit…like I snap…my mind blows. He finally stops me and says ‘You know I didn’t actually do that right, but did that feel good snapping?’ All I could do was pause, say yes, and start balling my eyes out. My emotions just poured out. He amazes me. He knew what I needed and he eagerly took the beating to get there! I just can’t imagine not having him…and he I…he amazes me more every day!!! He has been my rock, my crutch and kept my soul in tact the past year or so. Completing me and forcing me to be the true me at the same time.

And now…well…now I pack. It is time to return home. I was really believing I wouldn’t be home for Christmas, and even if I am not a huge Christmas person, that was still hard to deal with, and I think what was the fine straw that was playing havoc on me. My husband contacted my doctor to see where I was at, and ask if I was ready to come home…something I couldn’t do. I am not sure why I couldn’t ask. I tell myself it was because I didn’t want to push for it and have them send me on my way too soon, but in my heart, now, I know it was more because I couldn’t handle being told I wasn’t ready. That would have crushed me. I am however going home, and that is what matters!

Giving Up

Do you ever just wan’t to give up no matter how deep you dig?

You know when I started chemotherapy for the second time in my life it obviously scared the fuck out of me, but I was more than optimistic and eager to be that girl who could say she beat it twice.

When I awoke to find out I had meningitis I was pretty numb to it. I eventually went through the emotions…some self pity and anger, to hope and desire to push myself.

When I found out stopping chemo because of my situation would likely mean needing much more intensive treatment I gave up…I didn’t want to go through it…I had accepted my mortality. Some good friends and family pushed me through that and I eventually came around.

Now, I can’t believe I am saying this but my GAF seems to simply be gone. Things are going pretty well, but I can’t seem to motivate myself. I’m depressed, yet I don’t cry. I am sad, but really have no idea why that is. I have a go to list that I think about when I am down which always brings me around…it is having no effect. I received some lovely flowers the other day, and I think that might have spiraled me…I don’t know. It’s like it makes me think of the family and friends I am not around, especially my husband and daughter. It makes dwell on my situation. Well…I finally chucked them out today, so we shall see what tomorrow brings I guess.

I’ve never felt even remotely like this before. I hate it. It is NOT me, but I don’t know how to lift myself from it. I want to scream for help from the mountain tops, but how does one whom is pretty self-aware do that when they don’t know what is wrong?

Pushing Forward Back

It will likely be a night or 2 of lacklustre sleep, as I attempt to mentally prepare to return to the hospital. This time it is all a lot different. This time it is scheduled. An observation period. Time to see how I am progressing. Everything in my heart and soul says this is going to be a great visit…encouraging…optimistic…a way to ease tensions. At the same time I am not exactly on an ideal run, so it does make my mind race…what if it doesn’t turn out well…what if they find something….it is worrisome, even within my heightened confidence.

It has been a great week or so, and I feel ready to take new steps, and have. You know, I decided to read back through my blog here. I must admit that I was fairly shocked reading it at times. It made me giggle a bit and it brought some tears to my eyes. I pondered if it was truly helping me, and I think it is…a place to just sorta blab…to clear my mind a bit. I road some of the dark hours again and I smiled at the memory of others. It made me realize how fortunate I am in those that patiently surround my life, and how a little effort and a lot of luck has guided me, and that even in the darkest hours I do my best to find some sort of positive spin…a grand outlook to chase at the end of the tunnel.

Being out of the hospital, we are being a full family again…we’ve battled things, and now we are concentrating on just relaxing a bit and enjoying some good times. Often my mind races to some future concerns…I have some surgeries upcoming at one point or another, and my future Leukaemia treatment is still unknown…but here and now I am happy…we are happy. I actually feel really really good…like the best I have most the year! I find myself energized being out…being with my family…inspired to push myself as far as I can. Heck…I can push myself up to my feet against a wall now, I can stand after that, and I can take a few steps. Maybe it is the excitement of being out and with my family…maybe it is adrenaline…don’t really care…it has been great! My goal for the end of the year is to be able to hop. That seems like a mountain climb away right now, but fuck it…imma get there…why….because I said so.

I think mentally and emotionally I am in a place I haven’t been in ages to. My husband and I have had extended conversations about the condition and the time I was asleep…something that we really hadn’t before…that I couldn’t. He shared bits of conversations, and little things they did while I was asleep. From medical procedures to going outside of his comfort zone and trying to play music from the suggestion of some friends. He talked about trying not to cry at my bedside, to the first time I had visitors, to the concerns of my lack of response when I awoke and initial thoughts that I had lost a great deal of mental capacity. He told me about the day that I woke up and the fact that the skies erupted like a sign from a greater power as I did. I have always loved the raw nature of a storm, and I guess the timing was uncanny. He told me about about my essentially non responsive state when I woke, being knocked out by the docs and coming to in the morning with some life and pure confusion. I didn’t remember any of that. That I contacted a few people as best I could. I didn’t remember that either. That I really only asked about going home the first day. I don’t remember any of that. I shared with him my memories…waking and freaking from the tube and not knowing what was going on and just panicking…then really nothing for what I guess was a few days. I don’t know if when I freaked out was the day I woke up and was unresponsive or the next day. I don’t remember any of it. We shared some laughs about some things along the way after that…we shared some tears…he held me close and I was just constantly reminded why I know I am the luckiest girl on earth.

Right here and now…life is great.
I don’t know what tomorrow will bring, at all, and that is a bit scary.
It doesn’t matter, because these are moments to cherish…these are moments to hold forevermore.

The Test

“Hello. I promised I would give a bit of an update on T. I have never done a lumbar puncture but seen a few. It was hard for me to be there and watch. Guess because it was her. I think I teared up more than her. She did well. Very proud of her. Not much else to say. She had some minor paresthesia as they had some difficulty setting the spike and had to make a few attempts so she might be sore. Because of the setting issues spinal headaches are more likely via potential increase in csf seepage so I had them do an epb as well. She is in recovery now and I will see her again in a bit. Should be home in a few hours.”

That was the update my husband sent to people 2 days ago. I had my spinal tap and await the results. Might be a few days to a week…tensions are high, I am sore, but we are positive.

If you have never had a spinal tap, don’t let people scare you…yes it sucks, but it is not nearly as bad as people make it out to be. It is the soreness afterwards that sucks…not terrible pain, but general stiffness. You are getting this to take on the bigger challenges!

For me I still have mixed feelings on my husband being in the room during the procedure. Likely it is good that he was, because he made some good decisions for me…I am in pretty good shape…I work out lots, and apparently that can make the initial spike difficult. They had to make a few attempts on me, so he told them to do the EPB. Now if you don’t know what that is, don’t feel bad, because neither did I lol. Basically, as he explained it to me, they take some of your blood and find the puncture they made in your spine and make a clot so that the spinal fluids don’t leak. It is the spinal fluids that create the insane headache after the procedure…or is it the pressure loss from it…whatever…the leaking of that fluid makes life rough, so he attacked it head on. So that part is great…and it turned out good there…but there was a bad part to him being there. I never hurt until I looked up at him and saw tears in his eyes. For a doctor he is a puss…i kid…for a doctor he sees a lot of procedures and sick people, so seeing those tears damned near killed me…I remember seeing them, then feeling tears of my own, and not much else until I woke up at home with a sore boob…lol…I will explain that for ya!

Apparently the drugs were good…REALLY good. My husband tells me that he had to pull the car over on the way home and put me in the back seat. Apparently I had determined it was hubba hubba time and was getting rather frisky while he drove and was all over him. I am going to assume that my licking his face was me trying to give sexy kisses or something…that’s what I am sticking with! So he puts me in the back seat, and gives me my phone to entertain me. In that time, I managed to get 5 “texts” out there…not a single one can I comprehend! My absolute fave was one to a group of friends on Skype:

hapytime wihbi gluv styf

If you have any idea of what that might mean…please please share!

so…boob….lol

I woke up some time later…not being able to sleep on my back, of course, I was face down with my arm tucked under me, phone in hand, wedged against my breast…funny as hell yes, but fuck it hurt! I guess if after a spinal my biggest complaint is that…well…I am doing pretty good.

The only really really bad thing is attempting to pick up my daughter…too sore. But a friend gave me an idea…I just lay down on the floor and feed her…or as I say….milk me. Fun thing to do for anyone breastfeeding…when you are doing it and your bf/husband/friend is around, just start mooing…doesn’t matter how many times I have done it, he never knows what to say.

Mind over matter people…you are always going to have down moments…just don’t let them keep you down…when times are rough always look at the fortunes of your life. Have a phrase that you can envision…even write down that helps you reflect on it…for me, it is LGOE (Luckiest Girl On Earth). When I think that, I start saying…why did I start saying that…oh this, and that…yeah…I am fucking fortunate. This strategy has helped me a LOT!