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 18

I think that you can tell from my posts that I have had friends coming out of the woodwork   And yet, I have other friends that have been with me for forever just pick up the pace, and do what needed to be done. I was amazed at what my friends from high school did for me while I was sick. When they found out that one of their own was in need they just did what needed to be done.  Especially my fellow cheerleaders from high school.  We formed a bond that can never be broken and it has followed us for going on almost 25 years.  We live all over the country now and it doesn't seem to matter. They have been the hands and feet of Christ for me in a time when I needed Christ to carry me through because I could not carry myself. I felt their presence and their deeds in more ways than one. I want them all to know how thankful I am for everything they did for me.

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 15

I met Kelli Ditmar at one of the first jobs I had when I lived in Michigan. We knew right away that we would be great friends. I can't believe we have stayed in touch this long!  It's been 20 years!

She has been sending me wonderful and encouraging messages, as well as beautiful blankets to keep[ me warm and inspired when I was in the hospital.  Since I have left the hospital I ave looked forward to the notes she has sent me on a regular basis that have encouraged me and often made me laugh. They have brought me back to the days that we worked together and I love that.

And not to mention - she looks FABULOUS!  I love you Kelli.  I can't thank you enough for all you have done.

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.

What is your story?

I'm taking a break from getting caught up on my November thankfulness posts to post about something else that seems to be weighing heavily on my mind lately.  I know - I'm just a blogging fool these days.  :)

I have been hearing so much about different people's stories lately.  Some of it is famous people's stories. Some of it may be people I grew up with. Some of it may be people I work with. Some of it may be people that my kids know, or acquaintances that have a great story. Sometimes - it is even me that I am told again and again has a great story.

But here is the thing that is weighing on my heart, and that I think we all need to remember. ALL OF US HAVE A STORY.  Just because I have blogged about it, and I sit here and share it and make sure you know it doesn't mean I'm the only one with a story.  ALL OF US HAVE A STORY.

We all have a story.  A life story.  Things that have happened to us - good, bad, hard, things that could crush us if we let them. Things that we could use to point somewhere else. Things that have happened that have shaped us.

And not all of us are willing to share that story.  My life is an open book.  I have always said that. My life is an open book.  Now that is not always a good thing. The fact that every detail of my life is out there for people to know - not always a good thing.  But that is how I have always been.  When my husband and I were trying to get pregnant - you knew. I let everyone know about our infertility battles.  My intention was so that people who needed to learn from our difficulties could, but the downside was that everyone knew everything all the time.  I knew other friends who were going through fertility battles who specifically didn't want anyone to know at all.

Know that you have a story whether you know it or not, whether you share it or not.  Some people are better it at sharing it than others.  But all of us have a life story. Something that has shaped us and made us in to the person we are today.  It's a matter of whether or not you are willing to share what has shaped you.  It's OK if you are not willing to share, or if you feel  you can't. But know that we all need to be pointing to God in what we do - whether we are sharing our story publicly or not. This is the litmus test that we should be holding others to.

November Gratefulness Post - November 11

It is said that we have friends who come into our lives for a reason or a season. Some friends have been there for a really long time and some - not so long.  And then - hey! There goes a pumpkin!  HAHAHAHAHAHAHA!

That's my Kris.  I had heard of her through my mom, and then met her one year during my trip to Cancun, Mexico. She came running up to my sister and I and announced that she was adopting the two of us as sisters. Life as I knew it would never be the same. I now had an adopted sister who lived in Connecticut. And wouldn't you know it ... she loved strawberries too!  :)

She sent me the most wonderful gift box when I was in the hospital to lift my spirits. I still walk around in my beautiful hat to lift my spirits because she knew it would do that for me.

I love that she knew just what would make me strong because she is my adopted sister.  Thank you so much my love.

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.

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

November Gratefulness Posts - November 3

My next gratefulness post is about my mother, Pat Dempsey. She is more than just my mother, she is one of my best friends. Not many of you can say that about your best friends. I don't know what I would do without my mother.

I moved down here to North Carolina with the knowledge that I would have to take care of my parents some day. Isn't that how it goes? You take care of your parents? Who knew they would end up taking care of me more in the next 11 years than any parent had any right to.

Mom ... I know.  I know that morning, in the ER.... I know you left that room when the doctor said "You have leukemia" so that I wouldn't see you crying.  You left because you had to be the strong one for me, and you couldn't be if I saw you crying.

Thank you for all that you did, not only the past 7 months with this cancer - the late nights at the hospital - checking on me at home even when I didn't want to be checked on, but for everything that you do for me.  Knowing me better than I should know myself.

I can't begin to say how grateful I am for you.  I can't even show you. I will spend the rest of my life doing everything I can for you.

Thank you.

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.

November Gratefulness Posts - November 1

Before I get to far out - I thought I would put these posts on my blog. Here is November 1.

Ok. Believe it or not, this is challenging for me right now, but I am going to try to write down something I am thankful for every day this month. I know I have so much to be thankful for in my life right now. Be patient and I'm sure I will get to you. Today I am thankful for the fact that God has seen fit to look down upon this small life and find it worthy enough to save ...just one more time. I hope that I find a way to make him glad of that most worthy decision.

Unexpected - mixed feelings

I have been having a sense of mixed feelings lately.

On the one hand - I feel like this cancer has left me with almost a sense of a long term conviction. I may be in remission - I may have beaten this cancer - I may be alive - but life as I know it - will never ever be the same. This is not like anything else I have ever dealt with before.  All of the other problems, diseases, issues if you will - I could get over them. They may take a while - some longer than others. But they were all do-able. I joked about being that rare-find that got every statistical anomaly there was, every problem that came up.  But it wasn't a joke - it was real. I put on a good face.

And so when we "jokingly" started saying "Hey! It's been a year since I was last in the hospital." I was actually starting to freak out on in the inside.  That's not something you say to someone like me.  I inwardly actually had anxiety or panic attacks because I just knew it was coming.  But nowhere ever did I imagine something like this.  This was just cruel.

But I have been surrounded in a way I never knew possible since this whole thing began. I have been loved in so many ways and by so many people. I have been reached out to by people I didn't even know knew me.  In many times and in many ways I didn't even know they were reaching out to me.  But their blanket surrounded me at a time I needed it so badly that I believe that it saved me.

People came to me in the hospital. They stayed with me night and day - even when I didn't know they were there and couldn't acknowledge their presence or carry on a meaningful conversation with them. They stayed with me even when I argued with them. When they couldn't be there, they sent who they could. They made sure I wanted for nothing. They made sure I was never alone. I was visited by total strangers, but with ties to people I had not seen in 30 years. My church never left my side. My family would ensure I was never alone and had every answer to every question.

I didn't even know to be upset.  All I knew was to fight.  And fight I did. I fought may way back from the lowest point I had ever known. And almost 7 months later I am different person. Different from the days of my diagnosis in so many ways.  I can't possibly go into them here. I will never be the same. Part of that is just because of all I have been through.  But much of it is because of all of you. All that you have done for me.  I am a different person. And it is so unexpected. I don't even know where to begin. And I don't know how to thank you. I don't know what to say.

I have been reached out to by people who have expressed their own unexpected journey - either their journey through cancer - or a loved ones - and how it effected them. And not all of you are as blessed as I am.  Not all of your loved ones made it to the other side as I have.  I feel guilty - I feel ... wrong somehow for even being here at times.  Why me?  I don't know.  By all accounts and purposes I was not in a good place. I was high risk. I had one of the rarest types of acute leukemia you can get.  And yet - here I am.  In the triangle of North Carolina - near one of the best oncologists for this type of cancer you can ever find as he has studied it for years.  That can't be an accident I suppose.

I seem to have been wallowing in my own pity for a bit here ... in my own conviction.  I have had a lot to think about. It has occurred to me just how much I have to deal with moving forward in life. Just because I am in remission doesn't mean that life is hunky dory to be sure. But more and more I look around and can't deny that I am being shown that I need to accept he signs of life around me. I am alive! I have made it! I can turn this around! I have stared death in the face again! Again! I can't keep asking myself how many times I am going to do this.  I just have to realize that once again - I did it. It's me - I did it. Again. Throw me some more. I got this.

Acute Promyolytic Leukemia. Molecular and Hemotologic Remission.  BAM!
Ischemic Stroke. Walking and Talking and Reasoning.  BAM!

October 28, 2015.  Back to work.

After everything I've been through - maybe it's about time I found my Hallelujah?

A little bit of baking - Rigatoni Pie

I've seen this particular dish all over Facebook and Pinterest for a while, and I thought I would try my hand at it to see if I could do it with any success. And I am proud to say it wasn't too hard and I was able to make it pretty well. I am calling it Rigatoni Pie and it was a big success here at our house. I am here to tell you that you can make it too.  I am all about giving credit where credit it due and I am fairly certain that this was originally found at TheNoblePig.com so check it out there if you can.

Here are the ingredients that I needed:

• 1 pound of rigatoni
• container of shaved parmesan/arregiano
• 1 pound of hamburger meat
• tomato sauce of your choice
• mozzarella cheese - either shredded or finely  cut however you would like
• springform pan
• cookie sheet
• aluminum foil

Preheat oven to 350 to prepare the oven and boil the pound of rigatoni. While the rigatoni is boiling brown the hamburger meat. I have learned that while the rigatoni is boiling in the  water to keep a wooden spoon over the pot to keep the water from boiling over.

Once the rigatoni is cooked and I have strained it I make sure to wash it with cold water so that I can handle it better. I then put it in a large mixing bowl and sprinkle it with the parmesan/arregiano cheese so that it will be easier to handle when I go to stack it in the springform pan.

I then move on to the browning hamburger meat. I drain the fat and I add the tomato sauce. If you like other vegetables with it you may add it at that time. and let it simmer.

I then move on to the springform pan.  I make sure that aluminum foil has lined the cookie sheet as well as the spring form pan so that the tomato sauce I eventually put in does not leak through. I make sure that the springform pan is at an angle so that it's easier to do what I need to do and I start stacking the rigatoni in the pan. This will take some time but every piece of the rigatoni - the whole pound - will fit in that pan.

             

Once you are done, you then move on to the tomatoe sauce with meat.  You then spread that on top of the rigatoni and let it fall within the wholes of the rigatoni. To give it some help I used some old chopsticks I had and pushed in the wholes to help.

    

Once I was done there I took some shredded mozzarella and spread it on top. Then I put some aluminum on top and put it in the oven and cooked it for 30 minutes. For the last 5 minutes I took the aluminum foil off so that it would brown a bit. Then I took it off and let it sit for 5 or 10 minutes to just set up.

Once that 10 minutes was up I took the aluminum foil off and took the sides of the springform pan off and I had a beautiful rigatoni pie. I cut it just like a rigatoni pie and serviced with some french bread to the family.  The general consensus was that it was delicious.  A welcome deviation from our usual spaghetti and lasagna.  I hope you enjoy it too.

Unexpected ... yeah - all of it

So I haven't been very "bloggy" lately. To be honest... I just haven't been feeling it. The title of all my blogs has been "unexpected" after a blog I posted just before all of this happened that I had titled "Unexpected" after an Upward devotion that I did one Saturday afternoon.  I was saying that there is good unexpected and bad unexpected, but that basically it doesn't matter - God knows about it all and He knows what your reaction is going to be - good or bad - just give it to Him and walk with Him through it.  So as I gave it to Him and I walked through it all with Him I titled all of these posts Unexpected.

But to be honest - it is.  It is all just unexpected. All of it.  I am that person that I was speaking about. I have gotten through the cancer - I am in remission - I am in maintenance therapy. We are trying to figure out what is still bothering me in many different ways - I'm still experiencing vertigo and dizziness - I'm still experiencing headaches that won't go away.  Oh yeah - and in the midst of all this - I got to go see my Kidney Cancer doctor.  Guess what - it's been 5 years without a re-occurrence of Renal Cell Carcinoma. 5 Years NED.  One down.

Somehow - I'm supposed to be OK - be GOOD - with all of this.  I actually had a doctor say to me "You are a walking miracle!" This was about 10 minutes after saying "You are a shadow of your former self." I'm sorry but I think the former was probably more correct sir.  I really do feel more like I am a shadow of my former self.  I had actually gotten to the point where I had said "Hey! I think it's been a year since I've been in the hospital!"  Do not be mistaken - you won't hear those words cross my lips again. I had actually started to feel a sense of dread start to creep into me just before this happened to me because it had been a year since anything major had happened to me.  But NEVER had I imagined anything like this. I have been looking back at my facebook posts via applications like TimeHop or On This Day and all that I can see is ... this crap just keeps on happening.  It just keeps happening over and over and over again.

You spend all this time focused on getting through the chemo and getting into remission, only to realize - life has changed - forever.  This cancer is not like the RCC.  It is insidious. I had the stroke and it's side effects don't go away either.  And, yes, I'm doing wonderfully all things considered.  I don't want to make light of that in any way shape or form. I'm walking! I can see! I'm talking! I'm remembering! I don't want to belittle what God has done in my life.

But I do want to be honest with you. This isn't easy. This was totally unexpected. I don't like it ... AT ALL. I mean - really? Seriously? I don't even know where to start here when people ask me my medical history. I really don't. And when a nurse suggested I put it down in like a notebook or something - all I can say is the thought literally gives me a panic attack. 22 surgeries. 2 cancers. Among those surgeries some of the most rare and for no damn reason.  I have lost over 160 pounds over the past 6+ years and who knows how long some of that will stick. Some of that was intentional and some of it was not.

I just need to get this all out. I just need to get it down. I'm just tired of being told that I'm such a walking miracle and that I look so good.  I'm tired of being told my hair cut is so cute. I almost feel like it belittles what I have been through. I have so much left to do.

Unexpected - follow up with Dr. Van

So it's taken me a while to write this post since yesterday.  It was a very log appointment. I had lots of questions and there was a lot to talk about.  Let me see if I can sum it up as best as possible.

I am at a neurological low point right now (if you don't consider the point where I actually had a stroke which I don't remember, but I'm told really sucked). I have spent so much time having poison pumped into my body, and I have so many other things wrong with me in the first place (inner ear problems that complicate the issue), that I am at like a level 0 right now. It is to be expected that I would have trouble walking and keeping my balance and concentrating and getting really dizzy.

A big question was what is the cancer vs. the stroke vs. me.  Do I just need to give myself more time to rest and rehab, or can I expect some of this to just be a change to my life?  I still struggle to walk - I have even fallen.  I have trouble concentrating.  I have vision issues.   The consensus is that I need to rest a bit more and rehab and see an ENT and/or neurologist moving forward to work out some of the issues that I have going on that are keeping me so miserable.  It could be a lot things, and I could need yet ANOTHER brain MRI and a spinal tap to get to the bottom of things. Dr. Van actually used the words "leukemia in the brain" which made us all a bit uncomfortable.  It's very unlikely, but can only be ruled out by a neurologist with these tests.

Basically - now that we have attacked the cancer I will need to rest a bit and then start attacking the other things I need to attack.  I need to go back to see Dr. Jalkut to do my 5 year anniversary for my Renal Cell Carcinoma. Yeah - that other cancer I worry about re-occurring  Yes - if you have to ask - I am in denial about that - shut up..  That should be fun.  I need to go to an ENT or neurologist and deal with this god-awful dizziness and vertigo and weakness. I need to get stronger.  I am so weak people. I am still walking with a cane.  I have fallen.  I can't concentrate for very long and you can see it on me. It's like literally watching me physically deteriorate.  And I can't deal with it. So I need to get stronger.  This whole thing has weakened more than I care to admit.

We talked about the heart problems I faced.  They are directly related to the arsenic chemo I was on.  I am off the arsenic.  My heart is better and I should not have to worry about that any more.  He allowed me to go off the magnesium and potassium pills that I was on (thank you Lord!  Those suckers were huge!), and go back on Cymbalta (Daren is so happy!). My sinus rhythm is back to normal and I no longer have the prolonged QT.  This was directly related to the arsenic that they were pumping in my body.

And then there is maintenance.  We discussed maintenance - what it is - what the schedule is- when it starts.  I go back in 2 weeks and start maintenance.  It consists of 3 drugs that are all oral and will have 8 cycles that will make up 2 years and are monitored via blood work.  We talked about re-occurrence - if it would happen, how it would happen, and how it would look. I am considered to be in molecular remission. Maintenance will be long, but will be very do-able. I will not have the side effects I did before.  I can do it from home. It is chemo, but not like before. I should be able to proceed with life.

So.  Rest. You have to know I am not taking that news to well. The littlest thing makes me tired and that is the way it's supposed to be right now.  And I have some doctor's appointments to make. Whatever. I'm alive.

Unexpected - DONE WITH CHEMO

Thursday was my last day of infusion chemo.  In total I had 92 days of infusion chemo in the oncology center. I can't even fathom that.

Today we had a small end of chemo party during lunch.  I just wanted to thank some of the people that have been so helpful through all this - taking me to chemo when mom was laid up from breaking her leg, helping by driving the kids around, just helping out our family in general.  I know it's not an easy thing to help out.  But more than ever it's not easy for me to ask for help.  So we thought we would jut have a small party/get together at my favorite place to go after chemo to chow down.

We had a fantastic turn out.  I knew I wouldn't be able to get everyone there, but I was amazed at the turn out itself.  We had 30 people turn out.  It was great.  

I invited all of you there because of the roll you have played in my illness and recovery.  You all mean so much to me.  Thank you so much for all of your help. I don't even have the words to express.  And I have so much longer to go.  Getting through this infusion chemo is a huge part of my recovery and I'm so anxious to be feeling better.

But I just wanted to share a song that hit me coming home from my last chemo.  I know that when you hear/see it you will know why.

Where feet may fail and fear surrounds me

You never fail me and you won't start now.

When oh when will I learn this lesson oh God. Is it as I sit on the floor of my hospital room because I fell? You never fail me and you won't start now. 

Was it during those days post stroke that I don't remember? You never fail me and you won't start now.

Was it during any of those 92 days of chemo? Was it during that return to the hospital for problems with my heart?

You never fail me and you won't start now.

When will I ever learn?

Thank you for all the friends you send along the way to remind me.

The Easy Way Out

Obesity Help is where I first got my start. I learned so much about gastric bypass surgery and what little I thought I knew, what my options where, and what I still needed to learn.

I am so excited that they are coming to Raleigh in October for their yearly conference.  I am hoping against hope that I may actually be able to meet some of these people who have help me along not only my weight loss journey but also my recent health issues.

I recently read an article that I thought would e perfect fro all of you to read.  I hope you have found it as helpful as I have.

Surgery is NOT the Easy Way Out

Unexpected - great article

I found this great article and had to share:

What not to say

I hope you enjoy it.

Unexpected - my own expectations

This whole journey has not been what I expected.  AT ALL.  There have been a couple of people working on me on this.  In particular, my sister and my husband, trying to make me realize that I am probably not going back to work when I think I am going back to work.  I feel like I'm getting ganged up on that respect.  Don't tell anyone ... but they are probably right. Sigh.

Today I got a card from an associate at work that just hit me - at just the right time - in just the right way.  Perfection is simply the only word I could use to describe it.  I just had to share:

I am getting to that point in chemo where it is really starting to suck.  Like - SUCK. I can't even describe how much this card meant to me. I hope I get the message back to Brian just how much  I appreciate him reaching out to me like this.

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 - Update

On Monday I had my normal Monday activities. I always have an EKG, and then chemo immediately following. I took one of my daughters with me because she had yet to go to chemo and wanted to go. So Daren took us, and we went to lunch, grabbed some groceries, and got home. We weren't home very long and I got a call that the oncologist wanted me admitted to the hospital as soon as possible over some potassium issues. Very confusing on my part. A little while later my nurse, Diane, called and explained that they were actually pretty concerned about my EKG from earlier in the day and wanted me to be monitored regarding that overnight. What she was saying made much more sense.

After a lot of talking to doctors etc... it seems that the issue at hand is the chemo medicine I am taking (trisenox) is causing something called Prolonged QT heart rhythm. They are trying to fix it through my meds and hopefully we will.be able to do it that way. But if we cant I may have to be fitted with something with a pace maker temporarily.

That land of denial is looking so purty over yonder.

Unexpected - PTSD

I found this article and I thought it was amazing. I hope you take the time to read it and get as much out of it as I did.

PTSD

I never thought of what I was feeling or going through as PTSD, but that is exactly it. Leukemia? Really? As an adult? Not only that ... the rarest kind there is?

Welcome to Pamelot.

Unexpected - generally all of this

I haven't updated this in a long time.  Basically this whole journey has been unexpected and to tell the truth - I just haven't known what to say. This is so unknown to me.

I am currently in the break between my two consolidation rounds.  I didn't get much of a break between my infusion round (when I was in the hospital) and my first consolidation round when I was outpatient at Waverly Hematology outpatient.   I had chemo for five and a half weeks every day Monday through Friday with weekends off.  I was beginning to feel like I had chemo ever since St. Patrick's Day when I was diagnosed.

One thing I have discovered is that every cancer is so different.  Most cancers have chemo like once a week, or every couple of weeks, or even once a month.  But cancers of the blood, like I have, need to attack where the blood is made - in the bone marrow. So you have chemo EVERY DAY. I'm the only person there having chemo EVERY DAY. In fact, I'm the only one there every day.  It's uncommon for adults to get leukemia.  Surprise surprise!  It's much more common for children to get leukemia than adults.  You just knew that this woman would get something uncommon.  In fact, out of all the people to get acute leukemia - I got what 5% of people who get leukemia get.  That's right.  That's who freakin' rare I am.

So I finised my first round of consolidation on June 18.  This was also my anniversary - our 21st.  Can't believe we made it that far. Kind of hard to believe.  And to be honest.  This has to be the hardest thing our marriage has ever endured. I don't wish it on anyone.

The last week of chemo was so hard.  The build up of chemo in my system was really starting to take it's toll on me. I was struggling with nausea, and the headaches and bone pain was starting to really get to me.  I was hoping that since chemo had stopped I would start to feel better, but ..........

The build up would take a while to come down. It is now 10 days later and I have yet to see the light at the end of the tunnel.  Headaches are still very strong, I have to keep a strong eye on the nasuea when I eat, I am therefore still loosing a lot of weight (lowest I have ever been ), and the bone pain is AWFUL. I am also having to keep an eye on my blood pressure. Not in the traditional sense.  Mine is too low.  It gets so low and stays low for too long so I have to make sure I get it back up or I will have to go in and get more fluids to help bring it up. I have to stay hydrated for several reasons - blood pressure and my headaches and pain. So basically I should always be drinking - and it should not be caffeinated because caffeine can be dehydrating.

But I am finding that a lot of the things I liked to drink before taste much different.  I used to drink milk like it was going out of style.  I can't drink it at all now.  So much so that I am defficient in D now. I never was before. I am also defficient in Folic Acid. Not to mention B12. I am going to need a lesson in Vitamin Defficieny here soon.

The other thing I am really struggling with is the bone pain.  It's like nothing I have ever experienced. My bones actually feel like they are breaking at times.  The pain is unbelievable and the pain medicine isn't touchig it. It used to be that keeping moving would help it, but I am finding that  I am more unsure of my movements right now and my muscles are very week. Going up and down the stairs is the hardest thing I do.  Doing it more than once is so difficult. I keep waiting for this to pass and get to the point where I'm feeling better and I'm fearing that It was be feeling better just as I start my second round of consolidation.

Not all is bad. I'm glad to be on a break. My girls just left with my mom to go to Florida to visit my sister.  I am upset to have to miss this trip.  I wish I could go, but I'm not comfortable being away from the doctors just at this point. My mother was gracious enough to take the girls with her.  This gives them some time off to enjoy before they have to go right into seventh grade!  They are getting so big. And this will give me some time with my son.  It's always different spending time with just one of them. And the girls will enjoy time with their cousins. I can't wait to see my sister again.  I don't know what I would do without her.

So I don't mean for this to sound depressing.  But I wanted to explain why I don't put many updates out there and havent updated my blog much either. I'm just trying to get by these days and it's taking a lot out of me.  But please don't hesitate to reach out to me.  I'm trying to reach out to everyone.

Thanks.

Unexpected - what is leukemia?

I found an excellent video describing leukemia and why it is so insidious.  Please view it to get a better understanding of this cancer and how it works.

This video will give all of you a better understanding of how this cancer starts and why it is different than other cancers.  It is a cancer of the blood.  There is no tumor - it starts in the bone marrow and in the past 60 years there have been a ton of advances in the research for this cancer.

Unexpected - treatment schedule

I just realized that most people don't know what my treatment schedule is.  Seems I have been living within my own mind on this one. So here it is and I can refer people to my blog.  :)

I was diagnosed on3/17/15 with Acute Promyelocytic Leukemia in the ER. Needless to say that Saint Patricks day is no longer lucky for this Irish Girl! I was immediately admitted to UNC Chapel Hill and started the induction therapy part of my treatment.  It was a 36 day cycle in the hospital and I was released on day 37. On a side note - it was awful - we'll just leave it at that.  But at your lowest you find out just how many friends and people who love you you truly have.

I had to have a port installed. The port is a Bard Power Port: Bard Information. A port is something that is implanted under the skin and allows clinicians to access larger veins for just about anything - such as blood work, CT or CECT scans, chemo, etc...  It is in place instead of having to use IVs, which we all know I am now a horrible stick. It takes a conscious sedation procedure so that I can react if need be. It was not the most pleasant procedure, but it wasn't awful either in consideration of all the surgeries and procedures I have had done in the past.  Especially when you consider that I have this in place of the fact that I won't have to have IVs as a result. We have named my port Rupert and it is still a "baby port" and can occassionlly give me pain, etc... If I had the port installed earlier I would have started my chemo earlier.  My wonderful doctor was ready to start it up to a week after I left the hospital, but I needed the port installed and it wasn't there.  So we had to wait for the port and so the chemo started 2 weeks after I left the hospital.

Right before the port was installed I had a bone marrow biopsy after leaving the hospital to see the how the induction therapy had done. It was not super fun either, but not awful, and the results were amazing.  According to my doctor 98% of the people with my results never saw APL again.  So I am amazingly grateful.  The chromosomes they were looking for for my APL were undetectable.  Thankk you God.

Back to Chemo. 2 weeks after leaving the hospital I was able to start my first consolidation treatment and we were able to arrange having it at Waverly Hematology with Dr. Suzanne Kirby who is familiar with my oncologist at UNC Chapel Hill - Dr. Hank Van Deventer. This was a huge answer to prayer. My first consolidation treatment is 28 Days - Monday through Friday with the weekends off. A little confusing but I hope you are following me. I am taking ATO (also known as Arsenic - no comments please) through IV at Waverly for about 2 hours every day as well as ATRA by mouth twice a day. I am allowed to take the weekends off.  The ATO comes through my port. The 28 days of treatment comes out to be about 5 weeks.  I am about 2 weeks in so far.  So far my numbers have not been awful. We will see how it goes.  One of the side effects of both drugs is headaches.  Seriously. I have no words. Another side effect is dry eye. My make up hates me.  Also chapped lips.  This is Pam here. Ugh.

After the first consolidation round we will do the second consolidation round.  It is also 28 days like the first one, but the drugs follow a different regimen.  I will be doing the ATO by IV Monday through Friday as before, but the ATRA will be Monday through Friday on weeks 1, 3, and 5. I will also be doing this consolidation round at Waverly Hematology.

Currently during my consolidation rounds I have EKGs on Mondays.  This is because some of the side effects effect my heart and they want to check to make sure my heart is OK.  I also have blood work on Monday, Wednesday and Friday to make sure I am taking the drugs well.  They can do the blood work through my port.

After both consolidation treatments the current plan is to do another bone marrow biopsy to check how treatment is going. All expectations are that it should be fine.  Then I will start what is called the Maintenance Phase.  The maintenance phase is all oral and can be done at home and will be based on 3 month blood tests. I should be at a point where I can recover enough from both the chemo and my previous stroke in the hospital that I can hopefully get to a point where I can get back to work and participate in the maintenance phase while being at home and at work. I hope that makes sense.  The maintenance phase will be anywhere from 1-2 years and will be based on the blood work.

So this has had a lot of information in it, but I hope it answers a lot of your questions.  I think it has all of the information I have in it at the moment, but if there is not anything in it that you still have questions on please let me know. I would be happy to answer them.

Thanks.

Unexpected - Henna Crowns

I have had several people suggest that I need to have a Henna Crown done.  I whole heartedly agree! I would LOVE to have a Henna Crown! If you don't know what I'm talking about - this is what they look like:

Pure Henna has healing properties in it and can be great for those healing from chemo. Today I did some research and found a fantastic person who has done them with pure Henna powder, aromatherapy, essential oils, and lemon juice.  After my doc gives me the go ahead I believe I may have a little Henna party for those that would like to do this with me (because I have had several express an interest in this with me). Let me know!

Unexpected - Great Cards

I had a friend send me this link a while back and it made me howl. Then I saw something on it on GMA this morning so I just had to blog about it today.  Please support this woman, Emily McDowell, because SHE SO GETS IT!  Here is a link to her studio:  Emily McDowell Studios and here are some pictures:

You know me and my humor.  This is right up my alley.

Unexpected - Overcomer

Several people have sent this to me and I have resisted acknowledging it, much less posting it. And yet - here it is.

Sigh. One can only hope.

Unexpected - test results

I got an email today from the doctor in charge of my oncology:

Ms Devries,Your PML/RARA transcript level was undetectable on your last bone marrow biopsy. This is the most sensitive test used to detect your leukemia. We will continue to monitor this transcript as you continue with treatment - and, yes, we will use a peripheral blood test and not a bone marrow biopsy. However, patients that get to this point and finish treatment have 98% or better chance for cure. 
Your B12 level was 520. This is more than acceptable. 
I know there is still a way to go - but you have done very well. 
Page me with questions (919-216-1215). We will start your treatment on 5/11.
HvD

Is that not awesome???

Unexpected - dealing with all of this

It has always been remarked how strong I am and how I am handling all of this so well.

Well ...

Sometimes ....

I just feel like can't 

I wasn't expecting this at all.  I went deep into denial - I had no idea that I was going to be diagnosed with an acute cancer.

I know - everyone tells me how strong I am.

Everyone tells me how I'm the only one that could do this.

Don't get me wrong ... I am so glad that I have had this as opposed to any of my kids or my husband.  But .... really?  LEUKEMIA?  Chemo?

If I talk about the leukemia clinically - where I am physically and what needs to be done - I'm good.  I can have that conversation regularly.

But I just can't have the conversation. When I have any conversation about where I am emotionally - I cry. And hopefully the conversation is not very long.  But I will have my quick cry and then I try to re-direct the conversation so that I can stop the emotional side and any crying that I may be dealing with. 

I don't say this because I need help - I say this because I am finding myself avoiding the emotional conversations. I would rather talk to you clinically about what is going on than emotionally or deal with anything that is actually happening.

Unexpected - follow up appointment

So I was allowed to come home on Thursday, April 23. That was day 37.  I finished my initial induction treatment on day 36 late at night.

So I have been home for almost a week. I am still suffering with awful headaches and some nausea/being sick.  Monday I had my bone marrow biopsy (not as bad as I had thought it would be, but not a ton of fun), and today (Wednesday) I met with Dr. Van Deventer - he is my main doctor for oncology - and I love him.

So this is what I learned today: I need a port installed and that is scheduled for next Thursday, May 7th.  I have to have my port in for at least a couple of days before I use it for chemo and this is the first that we could get it installed.  Therefore, I have my first consolidation chemo treatment on Monday, May 11. I was even given the option of starting on Monday, May 4, but because I didn't have my port installed we had to go with Monday, May 11.

This was a bit much for me.  Dr. Van did say that according to previous treatments I should not wait the 3-4 weeks after induction therapy to do my consolidation therapy. I should do it as soon as I'm ready. Due to me not having a port we pushed out to May 11, but if I had one we would have done it sooner.

We do have a problem with one of the meds that I have been prescribed for chemo.  I will be on ATRA (orally) and Arsenic, or ATO.  You read that right - Arsenic. Not the same as what some wives have used to kill their husbands, etc.... :), but arsenic just the same.  Anyway a problem has been identified with the ATRA. I need it - it's one of the chemo drugs I have to have, but my insurance co-pay makes my ATRA $1200 a month. One thing that could lower the co-pay is if Dr. Van gives me the ATRA during my consolidation therapy - instead of me taking it orally on my own.  If we go that route we probably have to do consolidation at UNC Chapel Hill instead of being able to do this via Waverly Hematology outpatient. That is hard to deal with. I am not driving myself yet. I'm still suffering the effects from the stroke that I had and I can't even do anything on my own at this point - the therapists want me using the walker still. Specifically my right hand is still quite weak and numb. I see the occupational and physical therapists (2 separate people) twice a week. Fortunately, they come to the house and do my appointments here.

So I am technically in a hematologic complete response. My numbers are where they should be, but my marrow is showing that I still have evidence of promyeloctes/blasts, and that my cytogenics are still positive.  Dr. Van is not at all surprised by this and doesn't feel any of this is abnormal based on the fact that I have been diagnosed with APL.

The nice thing is he doesn't feel I need a bone marrow biopsy again until after the 2 cycles of consolidation. He also said that after the 2 cycles of consolidation I would just monitor the cancer with blood tests every 3 months from there. My bone marrow biopsy was not a big deal, but it wasn't fun either.

So if you have stuck with me so far, you have seen - clinically - where I am and what is next. That is where my head needs to be right now. I have been fighting nausea and headaches since I got home and we are trying to get those things under the control. But hearing today that I am not quite where they expected me to be with all my numbers, and that I need to start the next chemotherapy treatments sooner rather than later - that just took more out of me than I thought it would be. I have let it sink in all day, and to be honest, it's just not what I was hoping for today.  Not sure what I was hoping for or expecting, but I don't think this was it.

But I am strong - I got this. I have a few more months of active treatment before I can start to relax. Time to get my head around that.

Unexpected - good news

I have finally had some good news today. I was convinced that I would need another transfusion last night because my numbers were headed down again. But last night my numbers went up all by themselves! Not a lot, but enough to make sure I didn't need a transfusion! They also took me off the 3 times daily sodium pills I was taking. These were the only things making me sick, and now I don't have to take them! That is a huge blessing.

Unexpected - Overwhelmed

I have been very overwhelmed while being in the hospital. It all happened so fast, and it has taken me a while to adjust to not only the leukemia diagnosis, but also the stroke I had. I have not even been able to respond to everyone who has sent me things. I get packages and cards every day. It has simply been amazing. I wanted to try to do a blog just on all the people who have loved me. So I am going to list all the people I can. Please be patient with me.

• Jonathan Howells: I can't believe you sent me the basket you did! Thank you so much.
• Shannon and Jason Johnson, as well as Oasis Next: wow. I look at your cards every day. Shannon you anointing me meant more than you know.
• Pam Tremble: I love the sock monkey. So do my nurses.
• Marsha Daniel: what can I say? You are my Marsha and I don't know what I would do without you.
• Aunt Linda: you have given me so many things. I love that I have gotten to know my aunt so much better these past few years.
• Adryeana and Ann: your present was amazing and so timely!
• Missy French: I love your gift and it is so helpful in my recovery.
• Lindsay Wikoff: I hope you are having fun with Sean. I loved your package. It had so much helpful stuff in it. Your card is the best.
• Nobuko Shiriashi: I can't believe we are still in touch! I have loved your package, especially the pictures of Michael Buble!
• Kris Geer: your package was great! Doctors love your hat! It's great for me to do with the girls.
• Kelli Ditmar: I can't have enough blankets!
• Johanna Holland: what can I say? You are amazing.
• Carol Bennett: the flowers you sent are amazing. Everyone loves them. They are perfect.
• Reclaim: your card was perfectly timed and made me cry.
• Janice LaFleur: your card from the womens bible study was beautiful.
• Toni Carpenter: your card and gift certificate are amazing and timely. So glad I got to know you.
• Bill and Shirley Vis: thank you so much for the card.
• Aunt Joy & Uncle Ed: your card made me cry.
• Cathrin & Kevin Joyner: Thank you for housing Becky and for your card.
• Rebecca Bell: Thank you so much for the card.
• Uncle Jerry: thank you for the card. I had to tell you that I got a purple rosary and I think of you often.
• Carol Anne Mullaly: I can't believe I got a card from you. It was wonderful.
• Jenny McCleary & Family: your visit was so timely. Thank you so much.
• Stacy and Jen: Your visit and the voodoo doll were so timely. Thank you so much.
• Jill Bartruff: What can I say? Thank you for everything.
• Ruth Wynja Gibbons : Thank you so much for the card.
• Lynn McConchie: Hearing from you was so wonderful.
• Uncle Jim & Aunt Deb: Thank you for the card, it was great.
• Aunt Stacy:you were the first to each out to me and it means so much to me.
• Jason and Chloe: thank you so much for your visit and gifts.
• Annalee Timmer: Getting a card from you was so special.
• Lori Tuynman: Thank you so much for all your visits and gifts. They have lifted my spirits more than you know. Seeing everyone from work was wonderful.
• Becky Bolser: stop making me cry.
• Shannon Dempsey: You are the best sister ever. No more words.
• Pat Dempsey: what would I do without you?
• Daren DeVries: I will get out of here some day. 

I am sure I have forgotten someone and will get more to report soon, but I couldn't ignore who has sent me what I already got. Thank you so much.