Unexpected - where I am

So here I am.  What's up with me lately?

I did the talk on the Unexpected and how we should not ignore the times in our lives that are dark as long as do not ignore them - as long as we go through them with God.

So here I am.  I am going through a dark time.

I don't say this for a pat on the back.  I don't say this for an "Aw, Pam - it's OK." I say this because I just gave a talk on it and really it would be rather hypocritical of me if I didn't admit that I, myself, am going through a bit of a dark time, too.

Yeah, the cancer has been hard.  I have been classified as a high risk patient, which ensured that I have had to have maintenance therapy for 2 years.  Not a huge ordeal, but it's a lot to keep up with.  Pills to take that you can't miss, and schedules that you have to stay on top of.  It has taxed me because I have never really been very good at it.  So I have gotten much better at it because I have had to.

I think even harder has been my recovery from the stroke.  I hadn't considered it very much, but it has really been a lot.  According to doctors the stroke has had considerable detriment to my vestibular system - meaning the whole sensosymatic system of my body that handles the balance, focus, and concentration.  So I have gone through Vestibular Therapy 3 times a week where they "stir up" my symptoms in an effort to exercise my muscles. I have also been doing a specific kind of therapy on my feet in an effort to try to bring back some feeling in them (because I suffer from Raynaud's Syndrome as a result of peripheral neuropathy from the chemo). After doing these since the beginning of January it has been found that they really have not made that much of a difference. 3 times a week since the beginning of January.  I JUST CAN'T.  And I am not done seeing doctors.

So, yeah,  I am in a dark place right now.

A lot of you know me. You know I have been through a lot. 22 surgeries so far.  Countless visits to the hospital and doctors. And time after time after time after countless time I get back up again. It seems as though I get hit and I just get back up. I take a lick and keep on ticking so to speak. I may go to my land of denial for a while for some self preservation, but I seem to find a way to not allow these "issues" to keep me down. My faith keeps me steadfast.

And it is not that I do not have faith.  I do. But I am in a dark place.  And in keeping with practicing what I preach - I am just admitting - that is where I am. I am having a hard time.  I don't necessarily feel like I am at a place where I can take a lick and keep on ticking. I don't feel like I can practice my faith, or I can exercise my faith right now.  I don't feel like I am a good example to my children right now at what they should see when they look towards their mother for a Faith-ful woman - or a Proverbs 31 woman who can lead her children through the life they are experiencing right now.

Again - I didn't say this for a pat on the back. I didn't say this so you would have pity on me.  I just need to be honest and up front.  It's dark in here.

Unexpected - trying to find my sense of "normal"

I know I have not been keeping up with my blog.  To be honest - it's not because I don't want to - it has just been very hard for me to find the focus within myself after working, etc... to then spend time working on my blog as well.

Most of you know I went back to work full time back at the end of October.  I craved going back to work in order to find a real sense of normalcy. I have really loved going back to work. Being back in that building, and being back with the people I work with has filled that hole in my heart that was starting to widen and fill with anxiety the more I stayed home.  There were people who were not sure I was ready to return to work - for sure not ready to return to work full time.

Since returning back to work full time I will again be honest, and tell you that I have been struggling to find that sense of normal that I wanted so desperately to find by going back to begin with.  I have been considered a high risk cancer patient so I have to take oral chemo for the next 2 years in 3 month rotations. I have to be very mindful of what time of day it is so that I am sure that I am taking my meds at the right time.

I am still struggling with the after effects of the stroke that I had as a result of my cancer.  That is just as much a problem as the cancer that I am fighting - even though I am in remission from that. I have even fallen several times in the past few months.

And I struggle with longing for that sense of normal - it eludes me. I am so used to coming home from work - taking care of what I need to for home, kids, etc... and then getting back on the computer and doing what I need to do. Now I find it hard many days to even look at my phone because by the time I have driven home I have trouble mustering up that much effort to focus and concentrate. I desperately need to zone out. I am attending my General Physcian's Concussion Clinic, being seen at Vestibular Therapy, seeing a Neurologist Opthamologist for my eyes, and a Neurologist.

But I am driven to find that sense of normal.  I long for it. I need it. That is where I have been - hunting for my normal.

November Gratefulness Post - November 19

Cousins. Some of us have great ones.  Some of us take them for granted.  I have to say ... I think I have always taken mine for granted. I can go for very long periods with very little contact with mine. And for some reason I don't know why that is.  But I love them dearly.  And if they ever need me I do what I can for them.

But you don't know what your connection is to them until that connection is tested. Ours was tested last year when my dear Aunt Maggie passed into the next world. I loved her very much, and I will miss her dearly. So when she passed it was natural to step up and do what I could. It didn't even feel like enough.

But I was blown away by what my cousin, Angie, did for me when I got sick. It wasn't enough for her to check on me. She had to drop what she was doing and come up to North Carolina for a long weekend to help take care of me after I left the hospital.  This was so helpful in so many ways. It helped my mom and my husband because they had spent so much of their time taking care of me at that point. They were able to take a bit of a break at that point. She was very skilled and attentive to me and my needs. And it was just plain fun to spend time with her in a way we had not been able to in so many ways.  I know it wasn't quite the same because I wasn't quite up to par, but it really did mean so much to me.

The whole family just had so much fun while she was here. It was so needed. And it's something we all look back on with such fondness. I can't thank her enough.

November Gratefulness Post - November 17

I don't know if this person will even see this post.  His name is Ian. He was my first nurse when I was at UNC Chapel Hill.  Actually, he may not have been my first.  He could have been my second. But my memory of that time is not all that great.  But as far as I'm concerned he was my first. And I did not call him Ian. I called him Starlord. Why? Because he reminded me of Chris Pratt in Guardians of the Galaxy (one of my favorite movies of all time).

He got me through some very harrowing times during those initial days. And with grace. He was incredible. We had a lot in common as far as interests. I had just come back from taking the girls to Winter Jam and I had a bunch of videos to share because it was so fun. He loved all of the bands. He was thinking of proposing to his girlfriend. We shared lots of stories.

He helped me get through to not so fun procedure of getting my PICC line installed. He helped me focus and talked me through it as the radiologists did what they needed to me as I laid in my bed.

He encouraged me through various test results that I received in my room. He was also from New England and we shared a love for Tom Brady and the New England PEvenatriots.  That right there told me he was a good egg.  :)  He brought a fantastic poster of Tom Brady to encourage me. He said it brought him good luck, so it would bring me good luck as well.  Looking back, I could use all the good luck I could get!

And on that horrible day that I had my stroke - I was talking to him when it happened. I couldn't have been in a better place or talking to a better person. He knew exactly what was happening and what to do.  No one else did.  I was looking at Daren and asking him questions and apologizing for what was happening because I didn't understand.  But Starlord, he just snapped into action. He knew. He did what needed to be done. And I will be forever grateful to him. Without him I don't know where I would be today.

He only worked in the stepdown unit that I was in when I came into the hospital. But I managed to find him before I left the hospital and he came to see me in my cancer ward. I was able to see him after he got engaged and talk to him about it. He was able to see that I recovered from my stroke and that I was responding to my chemotherapy. I am so thankful for that. I hope to go back there some day and make sure that he knows that I am in remission from this dreadful disease, and that I am so thankful for all that he did for me.

November Gratefulness Post - November 16

One day while I was sitting in my room on the cancer ward at UNC Chapel Hill this reverend walked into my room.  At first I thought that maybe he was a chaplain with the hospital. I mean, why would I think anything else?

Then he explained that he was the father of someone that my husband and I went to HIGH SCHOOL WITH!!!!!!!!!  I mean what?  We live in North Carolina and went to high school in Massachusetts. Bethany Steigler Guiste and Kirk Steigler's dad, as well as Rebecca McGregor's pastor.  Their dad was now living in North Carolina and they had asked him to come to the hospital and check on me because they knew that I was in a bad way and needed that spiritual guidance and prayer.

I can't even tell you what it meant to me to have him come and visit with me.  It was such a short period of time, but the joy and peace that he brought to me simply can't be put into words.  We talked a bit. He prayed for me  and over me.  He anointed me with oil from the Holy Land. It meant so much to me!

Thank you. Thank you. Thank you. It was just what I needed at just the right time. And to come from friends that we hadn't seen in such a long time, and certainly wasn't expecting it from ... all that more meaningful.

November Gratefulness Post - November 14

I met Leah what seems like forever ago, through our husbands. They were what seems like "forever friends". They are guys. They are the kinds of friends who can not talk to each other for years and it doesn't matter cause ... well ... they are guys. They will not talk to each other, then see each other, get together and BAM! It's like they were never apart. 

So when Leah and I met there was some expectation that we would be best friends as well.  And I am here to say - we clicked.  :)  I'm not sure how - we just did.  And I'm so glad.  Even though we have lived anywhere from  thousands of miles apart to just down the road from each other ... we have made it work.  Admittedly - it works better just down the road from each other. :)

And she just knows my heart.  I wish she didn't have to know when it hurt so bad. But I am forever grateful for when she does. For she is one of my lifelines.

Thank you Leah.  I don't need to say much more.

November Gratefulness Post - November 13

I work full time at a great company. From the time I was diagnosed with this awful disease they have been incredibly supportive. But specifically the group of people that I worked with have been incredibly generous to me through this whole ordeal. They have been not only concerned for me, but have been there for me in a myriad of ways. They even came and visited me in the hospital. They made it possible for me to come and visit them at work once I could after I was out of the hospital, and made sure that my visits lifted my spirits. They sent me cards, gifts, baskets, etc... and they all came at just the right time, and had just the right words of encouragement. Many of them will never know just how much I appreciated what they did for me, and what they continue to do for me now that I have returned to work. Just because I have returned does not mean that the battle has been won. I continue to fight on a daily basis. I appreciate what all of them do for me every day.

November Gratefulness Posts - November 12

I know that I am very very behind. I have a very good reason. I came back to work full force - which is my M.O. I don't do anything half way. I go in all the way or I don't go in at all. Well, my brain that has suffered a stroke - and a pretty serious one at that - didn't react all that well to it.  I thought I was doing fairly well at it because I had remembered everything that I needed to and that was the measurement I was using. But in actuality my brain was giving me pretty good signs that it had enough and that it needed a break. I was getting headaches that  wouldn't stop and they weren't like the migraines I am used to. I was also experiencing vertigo and dizziness pretty badly. I could not remember what had happened  during my stroke and right afterwards. So my husband and sister helped me remember. It was not very pretty.

I had always wondered how my family had gotten through that time. It was really rather harrowing. How did my husband and sister know to do what they did? How did they know to listen to one doctor over another? How were they so sure they had made the right decision? I was so sick. I was in such unknown territory to not only them, but also the doctors. This was all so scary.  This was truly my land of denial. And they literally chose to keep me there. I am just making my way out of it, and it scares me. I will take a step out and look around and look at what I see, then bolt back at denial because I just plain don't like it. How did they live there without me?

And now I know.  There were friends - good - dear friends - praying me through it.  I cry as I write it. How could I doubt it?  RAMP. You were there. You stood in the gap. You knew. You prayed. You prayed for just the right thing.  I had no idea. I was in never never land. But when I talk to Daren about it now - he knows that it's the only way we made it through. It's the only way he made the right decision for me when he had no idea what it should be.  RAMP was praying for me, praying for the doctors to have unity, praying for Daren to make the right decision. He knows that without that, that without my sister beside him to help him have clarity of mind ... he may not have made the right decision to have me here beside him today.

I shake. I cry. I toss. I turn. Where would I be without my RAMP girls to hold me up before the thron of our almighty father?  As one of them most recently said to me ... to help me back from the "brink"?  

So you want to know why I have been behind?  I have been so tired from work.  My brain has been overworked.  I used to be on my computer 24/7. Even when I was done with work I would be on it - either working more or on facebook, or doing more research.  Now I am done with work and I am done with the computer. So I have had some trouble getting my posts done, and I apologize because it makes me fall behind on so many things that I am doing on my computer.  I'm sorry.

November Gratefulness Post - November 10

You find out who your true friends are when they show up for you when you are in your darkest hour. When they know when your darkest hour is. But also when they know how to make you smile like no other.  When they know your ins and outs.  When they know your sarcasm needs.  They know that the weirdness you need makes you better - lifts you up. Krystal - I can't thank you enough for being there for me when I needed you.  For showing up at the hospital right away. For showing up at the hospital later.  For taking me to chemo. For being at the house and for joking with me when I needed it most. And mostly, for crying with me when you didn't want to.  I know you hate it as much as I do.  But you will never know how much it means to me.  You rock my sister from another mister.

November Gratefulness Post - November 9

I was in such a bad place for a while at the hospital. And people came out of the wood work to support me. Some of them I have actually been with for off and on for about 7+ years now. Hard to believe.  But Wake Chapel Church has become a part of me.

I have worked with them through Upward Basketball and Cheerleading for a while now. My son did basketball. My girls did cheerleading. I was a cheerleading coach and then the commissioner. Then I was just too sick to do either. My one daughter decided she was more cut out to basketball instead of cheerleading.

But all along the way, Seth Carter made sure we could get in even when we missed deadlines due to my surgeries and sicknesses. Jenny McCreary pulled me in as a coach and commissioner - seeing in me what needed to be seen as a leader I didn't know I was. I will be forever grateful to them.

But to have Jenny show up at the hospital when I was pretty much at my worst, and show me love as though I was one of them will forever be emblazoned on my heart. It meant so much to me.  I hope that somehow, someway I will be able to repay you for your gift to me.  Even though my children have outgrown the Upward program I hope that I will be able to "pay it forward" and show the children in that program the love the I feel in my heart, not only towards Upward, but towards your church.

Thank you so much.

November Gratefulness Post - November 8

I have a group of ladies that I knew I could depend on before I got sick. I had no idea to what extent I would have to depend on them until the rubber met the road.  And to be honest - I had never met a one of them. I felt I knew them deeply.  We had been through a deeply intense experience together. But now I know.  I don't even have the words to describe how good they were to me. Not even when I was sick, but afterwards, too. They know my heart. Some of the first cards I got in the hospital were from them as a group, and it meant so much.  I got presents from some of them individually that were simply beautiful and had a lot of thought put into them. I treasure them. And I treasure the words and prayers they sent to me.  Reclaimers. I love you all. You know who you are.

November Gratefulness Post - November 7

When I was in the hospital I was amazed at the people who reached out to me and to my family. They made sure that we were all just encouraged and knew that we were surrounded in love.  Some of the people that did this were people were people we had not even seen in a very very long time. An example of this for me is Nobuko Shiraishi.

Nobu and I go back to Elementary school at Westminster Academy in Ft. Lauderdale. I love remembering our time together back then.  The fact that she remembers and not only that, but would take the time to reach out all the way from Japan just means so much.  Being able to introduce my family to the great traditions of Japan that Nobu was showing us was a great lesson as well as a fantastic distraction that I desperately needed at the time.  I still love to explain to other what the beautiful cranes are that they may find in different places - either on my desk or by my couch, etc... I love to spread the joy of those little cranes everywhere, but also I love to have the opportunity to tell the story as often as I can.

Thank you, old friend, for giving me one more thing to be grateful for.

Awesome Article

I found this great article on some things I wish I had known about cancer before I had gotten it.  So many things rang true for me.  For instance - not always having to be positive.  I seem to always have to be positive - always have to put a positive spin on things.  To be honest - sometimes there just isn't a positive spin to be put on things - end of story.

It's a process without a timetable.  Yeah - I don't deal well with that.  I want answers and I want them now. Being told I need to wait and for no apparent reason ...  no bueno.

Take time to remember who you are outside of cancer.  Huh.  There's a concept.

Embrace your impermanence. Moving with it allows you to have peace in a world where just existing can be stressful.  Whoa.

Be gentle with yourself.  You can't rush healing.

Grieving allows you to heal.

This is just a little bit.  Read the rest for yourself.

http://www.huffingtonpost.com/kimberly-fink/10-things-i-wish-i-would-have-known-about-life-after-cancer_b_8433304.html

Unexpected - Life after diagnosis

I know - I am known as that happy go lucky Purple Pam chick.  And to be honest - I really kinda like it that way. I like being happy go lucky.  I have claimed Proverbs 31:25 as my verse:

She is clothed with strength and dignity and she laughs without fear of the future.

All things considered - I claim this for me - all things me. I laugh without fear of the future.  Christ is my future.  His grace is sufficient for me. I have no doubt.

But you know what? It is just really hard some times. He never said it would be easy. And right now is just one of those times. It's not easy.  Cancer sucks. Chemo sucks. And yeah - strokes bite the ever living big one.

5 years ago I was diagnosed with Renal Cell Carcinoma. The discovery of my kidney cancer was "accidental". A tumor on my right kidney were found in an abdominal CT Scan for something else entirely. I was fortunate in that the tumor was completely contained in my kidney and had not spread. They removed the entire kidney, and did all the appropriate scans.  I didn't need chemo or radiation, etc...

I was monitored for 5 years and was about to be "graduated" from that program when they discovered the Acute Promyelocytic Leukemia.  I remember feeling with the RCC that even though I was a Cancer Survivor it almost wasn't real because even though I had cancer and I was being monitored - I didn't have to have any of the traditional therapies for it.  With APL it has been completely different.  I mean - I immediately spent 37 days in the hospital.  Within the first few hours at the hospital I had my first chemo treatment. And 2 days after being admitted I had a stroke while sitting there talking to the nurse.

So, you wanna talk denial?  I joke about it all the time - but actually experiencing it - real mental denial - really kinda freaky.  Because I went in it - quickly and big time. I wouldn't even say I had a stroke.  I knew I had one, but I would say I had a blood clot somewhere that had to be dealt with - not a brain stroke that was literally affecting the whole right side of my body in a pretty bad way.

Clothed in strength and dignity.
Clothed in strength and dignity.
Clothed in strength and dignity.

Not something easy to actually do when you are living with Leukemia and a stroke. Plain and simple.  I don't know how else to say it.  It's just hard to clothe yourself in strength and dignity.

And I keep thinking that this is going to get easier.  It's got to get easier. My plan was to do one infusion round in the hospital (original round I was there for 37 days for), have a break and then do a consolidation round of  5 1/2 weeks chemo, get another break, and do my second consolidation round very similar to the first consolidation round before being released to maintenance which would be 1-2 years in an oral fashion that I can hope to get someone back to life - go back to work, etc... My eye was on finishing that second round of consolidation therapy - getting through the break after that to see how I had recovered from the stroke and chemo so that I could go back to work, etc...

But lately I'm beginning to feel like ...... life is just never going to be the same.  From here on out - I need to get used to a new normal for me. And to be honest - I don't like that ... at all.

The stroke has affected several things on my right side that may never get better than they are right now. We can hope and try, but they may be the best they are. I can't make a full fist with my right hand. That whole arm is not very strong even though I have been exercising it. Those two things may not get better. I also have some problems with my right eye. We jokingly call it my "stroke eye". You can see it in pictures when I am smiling - it droops. Docs think that will be permanent.

And then there are my feet. Ouch. They hurt so bad. Both of them. Census is this is not the stroke because it's both of them equally.  This is cancer and chemo. They feel like they have been asleep, but they feel like that all the time.  And they get worse at certain times - and when they do it's AWFUL! Pins and needles all over.  In particular from the balls of my feet to my toes, and also in the arch of my feet. In particular, at night - I want to cut my feet off, and as chemo goes on and the bone pain gets bad it spreads up my legs. I am told this doesn't go away.  Like neuropathy - at best my toes and feet may go numb.  I've talked to people who have it 10 years out and it still causes them to trip and fall. Great!  Fantastic!  Let's laugh at the future together - shall we?

I'm not looking for sympathy or anything like that.  I just think that this whole experience was so foreign to me. I expected to be able to get through this whole cancer thing and be feeling better.  I knew it would suck - that it would be hell to get through - but that if I could get through it - I could make it to the other side as that Purple Pam chick who was so happy go lucky. His grace is sufficient for me, right?  But recently I read an article that perfectly said exactly what I was thinking.

I Lived Through Cancer and It Still Sucks

It really touched me.  I hope you will click through and read it and get as much out of it as I did.

And I sure hope that my stroke/chemo brain has not killed this blog post.

June 15

June 15 is coming quickly.

5 years since Elvira was evicted.

The 5 year mark is apparently a magical mystical mark in the cancer world. If you can get to the 5 year mark without any re-occurrence then you get to ... graduate.

The 5 year mark is all about survival rates. When I was first diagnosed almost 5 years ago I was on auto pilot. 5 years seemed so far away. I remember hearing "Wow, Pam - you're so young to be diagnosed with kidney cancer.  This is not a young person's disease."  But it all seemed to be in that Charlie Brown teacher voice - so over my head. The average age of a person diagnosed with kidney cancer is 64, and is very uncommon in people under 45.  I was 36 at the time.

5 years is right around the corner - it's coming so quickly.

I graduate from my care with my urologist.  All that means is that we won't monitor me so closely. I have mixed feels about this. On the one hand - I'm pretty anxious about that.  Statistics say that for my stage of cancer that after 5 years the chances of it coming back are 20%. And the other thing to consider is that I have riddled my body with hella radiation at this point. And not just from monitoring the cancer. So at some point I need to dial that back a bit. But it makes me nervous to just stop monitoring.

Then I have to ask myself... well Elvira just showed up out of the blue when I was being diagnosed with pancreatitis. So what makes me think that if I have a re-occurrence I won't find it when some random nastiness pops up.

So ... Proverbs 31;25 ...

She is clothes in strength and dignity and laughs without fear of the future

I am seriously considering this as my next tattoo - maybe where Elvira was evicted from ... see picture above.

Just know that I'm struggling with finding peace with my 5 year anniversary.  I need to find a way to celebrate June 15.