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!

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.

Unusual Side Effect?

Okay…this one is embarrassing, but I am still going to share. I searched the web, I talked in group, I talked to friends, and finally talked to my doctor about it…I have heard of nobody having this reaction….it is driving me fucking nuts…horny! Constantly aroused, and I think I broke my husband! So weird…it is like my nerves are constantly tingling, and yeah…even down there! It is the most awkward thing ever! Basically my doc said ‘of all the potential side-effects, be happy with this one.’ I know he is right, but seriously…it is soooooo frustrating!!!

It does go to show you though…no matter what your side-effects, they vary to all extremes!

 

1st Session

2 posts, one day…crazy right? Yeah…I guess technically it is tomorrow…hmm…but it is early…I thought about making them one post, but I wanted to nap. I love napping. I am really good at napping!

So beyond the emotions of 2 days of reading and processing I also had my first chemo session yesterday. It wasn’t too bad. The worst part was the ice and the cooling packs. If you or someone you know is going through chemotherapy tell them to talk to some support groups about this as well as their doctors. I know there is some level of controversy around cooling caps, but there has been a vast amount of research on them in the past decade, and they get lot more support. When I talked to my doctor, he supported their use. He explained that a lot of the controversy was that chemotherapy heats you up, and this loosens the pores, and this is a contributing factor to hair loss. The concern with cooling caps is that you lose a lot of the energy from your scalp and there are concerns that by cooling you expose yourself to trapping some of the toxins and creating isolated concentrations in your brain. Scary thought right? But he said that they research around my treatment indicates no correlation..that there is always a risk but he was very confident it was ok. So the basic premise is that you ice areas of your body down prior to your session and some actually during, and then after. This keeps the pores tighter and can minimize losses, and even on rare occasion eliminate it. For me, I did the cool cap and iced my hands in effort to save some hair and I really really hope my nails. Now even without this, the effects generally are not pronounced right away, so only time will tell. It was a weighted decision, but based on the feedback I received I decided to do it. Every person’s treatment is different, and ever person responds differently with or without precautions. This is something that they will talk to you about, and something I recommend going to group sessions to prepare yourself for. I’ve met people who blistered or got mouth sores, I’ve met people who lost every stitch of hair, I’ve met people who had minimal effects…the key is this…be prepared to set vanity aside…you are a beautiful person and this stuff will return…and most importantly…your life is worth more than any of these things! Besides…wearing wigs can be fun! I do it sometimes and I have hair!

The IV was hard to describe…it was cold and warm at the same time. I would get a cold presence followed by warm tingles. Like I had a cold crust that had warmth trying to break through, if that makes sense. The cooling periods took most of my time up…it felt like an eternity, but realistically my IV was inside of an hour. I could have driven myself home, but of course you don’t know where you will be emotionally, and my husband took me. I felt fine after other than a little tired…thus far, this isn’t so bad, but I know I am just starting.

For me, the hardest thing is not breastfeeding. My doctor told me that a contributing factor to my issues as a child could very well have been that I was not breastfed, and that while nobody knew for sure, most doctors agree that breastfeeding as long as you can is good for your child. There was some specific compounds mentioned as that which is felt to minimize the risk of childhood Leukaemia, perhaps I will look that up later and post something…my husband will remember the terminology.

Anyways, I am scheduled to do this Mondays and Thursdays, and am ready to kick this thing in the ass some more!

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!