I Wonder

I have been thinking about the dichotomy in my body between the left side and the right side. On the left side is my one working kidney and the one working ovary.  So when I have pain on the left side of my body in that particular abdominal area - I can blame it on Liza (my good kidney), or Ophelia (my good ovary).

It has also been noticed that my left eye is a bit higher than my right eye. And, and I don't think it's a mistake that my stroke affected the right side of my body - making it ineffective since that side is basically ineffective anyway.

We're going to have to find a name for this.  It's just too good to let it go.

November Gratefulness Post - November 20

Friends who would not give up.  That is who Cheryl was to me. She would not give up on me ... period. She was in Chapel Hill and was trying to visit me at the hospital several times only to find that I was not really in a position to be visited.  Either I was asleep - which at that point was not something I could easily be woken up from - or I was out at a different test like an MRI.  I will give this to her.  She was beyond "Hey Pam ... What's good?" She was determined to make sure that I was recovering from this awfulness.  That my family was remaining in tact. That I was not being swallowed up whole from what had happened to me.  And I appreciate what she was trying to do - every bit of it.  I am so thankful.  For her friendship, and for her effort.  I won't forget it.

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 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.

November Gratefulness Post - November 6

My family took my phone and my computer away from me after I had my stroke in the hospital. Having them just made things very frustrating for me because I had forgotten some very basic things.  Things such as passwords, and even to some extent how to do some basic typing because I had lost some a lot of functionality on the right side of my body.

So when a friend I had not seen in years walked into my ICU room to take care of me, I cried for the first time in a long time. Becky, the fact that we can go years not saying a word to each other, but that you would know exactly what I would need as soon as I would need it - that you would drop everything you have going on to give me what I need when I need it ... you just don't know how that made me feel.  That you know me so well... That you know my needs... physical, emotional, spiritual ... even from so far away ... so much so that you can just drop what you are doing and come be with me like that when I need you most.  Seeing you and spending time with you was such a treat - one I will never forget.  I am forever grateful to you for the time we spent together.  I sure hope the next time we spend time together it's not because one of us is really sick.

November Gratefulness Post - November 5

I am grateful to many people for helping me out.  But I am grateful to these people for jumping up and being there immediately - for coming all the way to Chapel Hill IMMEDIATELY.  Not knowing what was going on, but know that a member of the body needed help and needed it immediately.

Shannon and Jason - you will never know what it meant to me having you there for my first chemo party! Having you there to pray for me in the unknown.  Having you show up in the ICU when even I didn't know what was going on.  Having you anoint me with oil.  You just don't even know. It means so much and I still sit and cry over it today because that moment was so pivitol for me.   The cards you delivered for me from the youth group stayed up in my room the whole time.  They were not just a joy to me, but also to the whole nursing staff.  We all loved to look at them and read them. I love to do it to this day.

AND!  I can't thank you enough for how you care for my children. I know... I know... I know.  You have been so good to them. You have intervened for them in a way no others have.  You understand them.  You know what they love.  You know what they need.  And you take it more seriously than any other.  I can't thank you enough.  I can't thank you enough. I can't thank you enough.

And you are so fun.  How much do I love that?

What more could I ask for in the youth group leaders for my children?  I need you to know how much it means to me.  I hope that this gratefulness post gives you some idea just how much I appreciate you.

November Gratefulness Post - November 4

This post is going to be about my sister, Shannon Dempsey.

I know I say this about so many people right now.  But I mean this from the bottom of my heart.  I don't know where I would be right now without her. The bond between us has never been stronger and I hate that it took something like this to make it this way. The fact that when she heard what was going on and dropped everything to be with me .... I will just never be able to repay her.

She stayed beside my bedside during the most harrowing hours.  She saw me at my worst.  She did not bat an eye when my worst got even worse than I ever imagined it could be.  When not only my questions got harrowing, but so did the doctors.  She laughed with me when the only other option was to cry.  She helped my family get through their own issues by pushing through her own.

I know that 2015 has been a horrible year for her, too.  Here is hoping and praying that we both start to see the light at the end of the tunnel soon.

November Gratefulness Posts - November 2

Another day of gratefulness... where shall I begin? My husband, lover, best friend, Daren DeVries. The first guy I saw when I moved to Massachusetts, it's not a mistake we fell in love and married. Thank you for putting up with me. Thank you for making important decisions with me and for me. Thank you for understanding me when I don't understand me. You mean more to me than you will ever know.

Unexpected - Lessons

So many of you know that this round of chemo has not gone as I have planned.  When will I learn to stop planning things anyway?

First of all, the week before chemo started mom had an "accident" and broke her FEMUR (who breaks their femur for no apparent reason again?  Oh yeah - my mother) and had to have surgery to put 2 rods and a plate in her hip to fix it.  Don't ask me to repeat that.

And yes - I had me a down right nervous breakdown.  You read that right.

My mom has for all intents and purposes been my main caregiver.  She takes me to chemo every day.  She comes to the house and checks on me.  She does me.  End of discussion.  Now I can't go to the hospital and after the hospital I can't go to rehab because I'm a cancer patient.  Um - WHAT?!?!?!?!

My sister flew up and took care of mom - and let's not kid each other - me - for a good 2 and a half weeks.  She even broke mom out of rehab because that place was just - well - just beyond.  I don't know what we would have done without her.

Mom moved into my aunt's house because of ease of use, and other things.  She has been doing very well.  In fact, last night we had dinner with her for her birthday and she WALKED into the restaurant with a cane.  We are so proud of her.

I am back at having chemo and it's every day like before.  Monday through Friday. But my mom can't take me.  I had to do something I was totally not OK with. I had to let other people take me to chemo every day.

Now some people I am totally OK with taking me to chemo.  My hubby can take me - my good friends can take me - I'm good.  But I can't ask them to take me every day.  That's a HUGE commitment.  I was going to have to LET people either weren't so close to me - I didn't like - possibly didn't even know - take me to chemo. I'm crying just writing this!

It was like God was tapping me on the shoulder.  Pam - I got this. I've heard you saying this whole time that I DO give you more than you can handle - and I do it on purpose so that you will rely on me.  Well, the rubber is meeting the road chicita.  Let's do this.

Can I just tell you .... I have met several people I never knew.  I am so glad I know them now.  AND! I really needed to know them.  They had major things I needed to know in terms of cancer.  One was a nurse at Duke for Bone Marrow Transplants.  God are you freaking kidding me? One had Lymphoma in the 90's.  Um - seriously.  I reconnected with an old friend I hadn't talked to or seen in years and our time together has literally been a JOY. A JOY! I have been able to spend time with other friends I just never would have been able to!  This time has just been such a blessing I was never even looking for.

Really God?  Really?

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.

Unexpected - LEUKEMIA

So my last post was called "Unpexected" how little did I know just how Unexpected a turn my life was going to take.

I have struggled with whether I make this long story short - or just start from the beginning.  I will just start from the beginning since eventually  I will have to go back there anyway,

So Sunday my husband and I were out and about buying a car that we have been searching for  for literally years.  So excited that we were able to finally find it and afford it after my bonus at my new job..  But after a long day I was tired and exhausted and just wanted a nap. My husband noted that I had some new bruises on me and was like "WHOA! you better check this out.". I looked at the bruise and it was hard underneath. As I continued to undress we found many more bruises that were hard underneath.

I called the PCP on call.  Their best guess was that it was a rare reaction to new medication. But to come see my PCP on Monday

So I came in Monday morning and saw the most comparable Dr. Bloom.  He also did not think that I was presenting with erythema nodosum. But he wasn't sure what else what it could be.  He took some bloodwoork as well as a strep test, and gave me some pain medicine for some awful joint pain and headache I was having.  Told me to keep an eye on the bruises - if thy were getting bigger - more frequent, etc...

Monday night was awful - very difficult to sleep, etc...

Tuesday morning Dr. Bloom called Daren and said "Call EMS and get her to the ER immediately. Her bloodwork  is very concerning."

We went right to the ER.  We had to do some initial waiting, but not a lot. I was taken back to have a head CT, but pretty much as soon.  The  ER doc came into where we were and point blank said "I believe you have leukemia."

You want to talk about Unexpected? This was not what I had I had expected people. I am almost 5 years out from Renal Cell Carcinoma. I was expecting to celebrate that.

My new normal.... I have taken up residence at UNC Chapel Hill Hospital. I have already had my first chemo.

I have had to tell my children that their children have cancer, yet again.

UNEXPECTED.  More to come.

Unexpected

I have been involved with Upward  Cheerleading for several years. I had signed my girls up to participate when they were in kindergarten and immediately volunteered to help as a coach.  I was quickly tapped to help out further as the Commissioner of the League and served in that capacity for several years before having to step down because life was getting so crazy hectic.

But I have always loved Upward - what it was accomplishing - the people that I worked with, etc...

My daughters are about to age out and I had let Seth - the Director of the league know that he better take advantage of me this year while he could!  :)  So he asked me if I would be willing to do the devotions during halftime at one of the games.  That is probably the one thing I haven't done in all the years I have worked with Upward. I have led practices, kept the scoreboards, helped with snacks, you name it, but I have not led devotions at halftime in front of everyone attending a game.

So I, of course, said yes.  And then I struggled with what on earth I would say - and of course, that I had to say it in front of all those people.

Here is what I said.  Sorry for all of the background noise. My lovely husband did the best he could recording it.

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.