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.

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 - 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.

Getting My Energy Back

So how many of you out there use Timehop? That fun app that lets you see what you were doing on Facebook, Twitter, Instagram 1 year, 2 years, 3 years ago, etc.... It's kinda fun - like the ultimate Throwback Thursday.

But something that has struck me lately when I peruse back through what my posts were years ago - especially the posts that are 5 years or greater - were how much energy I had. I look at the posts I had on the weekends and I'm like "So productive today! Video duty for 5 hours and then made lunch for the fam before putting dinner in the crockpot and going for a 5 mile run. Did homework with the kids and then conquered mount laundry before making sure all 3 kids got their baths before I put them to bed." At first I was like - that must have been a fluke. But then I started seeing them all the time. How could I feel so differently? It wasn't THAT long ago was it?

Unfortunately over the past 3 years my streak of needing surgeries and running into random health issues did not let up or get any better. I proceeded to shed un-needed organs at a rapid pace.  I no longer have my stomach  (didn't even realize that was un-needed did you?), as well as one of my ovaries, and a small section of my small intestine has now evacuated as well. This in addition to only having one kidney, no gallbladder, and no uterus. I am now severely anemic - so much so that I have to have iron infusions every 4 months or so because my body just can't keep my iron levels up. In conjunction with keeping iron levels up I also have to give myself B12 injections once a week in the thigh.

I have just recently felt like my energy levels are coming back from a few of these surgeries. It's so hard when they hit you just one right after the other.  And some of the organs I have said goodbye to are more major than I would care to admit. Whenever I had my kidney out the doctor's were all like "Oh - it's all good - God gave you 2 of them and your body will adjust."  Isn't that fantastic?  And it does - from what I have read Liza (my remaining kidney) has now grown in size - probably double - to compensate for the work that it has taken on for Elvira.

But I still don't feel like my energy is anywhere near being able to keep up with what I used to be able to do before I had cancer. How much of that is age? How much of that is all the surgeries I have had? How much of it is the anemia? How much of this is just my new normal?