Bad Blogger

I know - I am a very bad blogger.  I haven't blogged in 2 weeks!  Crazy!  I have been at home - trying to be a good girl and rest and recover.  My major incision is still iffy at times, but the pain has gotten better.  I am reminded if I try to do too much that I am recovering from having a major organ removed from my body. 

The other thing that I have been struggling with lately is feeling very dizzy and shaky.  The problem is that this could be attributed to many things.  It could be medication I am taking - it could be that I haven't eaten enough - or that I have eaten the wrong things.  I am getting postural hypotension a lot the past week or so.  That is when you stand up from sitting or laying down and get very dizzy - it's a result of a drop in blood pressure.  Like I said - could be lots of things.  Your kidneys (or kidney in my case) play a big part in your blood pressure.  But tri-cyclic anti-depressants can also cause this (I take 2 different ones right now).  And with my gastric bypass - the dizziness and shakes could be caused by either not eating enough or eating the wrong things (too many carbs, etc...).  All I know is I have spent an awful lot of time in bed feeling like crud the past few days.

I have my 4 week check up with the surgeon tomorrow.  I will talk about it with him.  Assuming that all else is well he will probably sign off on me returning to work.  I was feeling like it was time, but the past few days have made me wonder what the heck is going on with me.  I don't like wondering what is going on with my body.  I'm really rather tired of it.

But I am just waiting for 6 weeks post op (2 more weeks to go!) until I can run again.  Of course, it's been hotter than the south side of the sun here, so when I can start running again I will have to be very careful as to when and how far and how long I run.

Something that I did just today is I invested in a RoadID.  What is a Road ID you ask?  Well, it's kind of like a medical alert bracelet - but mainly for when I am running. 

I say that because it's not really a fashion forward accessory that I might wear to work or for an evening out.  For that I will have to find something to work better.  :)  But when I run I often times run in places where people don't know me and most often by myself.  If I were to get hurt, or pass out or something stupid like that - how would I let people know who to contact or what is important to know about me?  It appears more and more these days that I have some important medical information that people should know about me.  If I'm unconscious - how would they know?  The reason I chose Road ID is because it is interactive.  It actually gives them a website that they can go to and enter my information and it will give them everything they need to know - such as my emergency contacts, doctor information, my allergies (I have 2 now), and other important medical information - such as the fact that I have had gastric bypass and I only have 1 kidney.  I was seriously running out of room to put all this information!  :)  This allows me to put it all on a website and first responders would be able to see everything by entering the information on my bracelet.  At least now when I know I will not have anyone with me - there will be a way for people to know what is important to know about me.

Sunday Musings

I went to church this morning.  I really needed it.  The first song the praise band was singing was one of my all time favorite songs "Blessed Be Your Name"

 

  

My favorite words are

 

"Blessed be Your Name
On the Road marked with suffering
Though there's pain in the offering
Blessed Be Your Name".

I am reminded again and again that God never promised any of us an easy life - He only promised He would be with us in the midst of it if we asked Him to.  So yeah - cancer - still dealing with that.  Don't like that word - don't like what it means.  And not really having the best time the past few days with all that having a kidney removed from your body entails.  But I look at these words and I am reminded of many who have gone before me dealing with much more than this and how they continue to Bless the name of the Lord.  And so even though there may be pain in the offering - I offer up my praise.  You give and take away, but my heart will choose to say Blessed be Your Name.

So ... back to what I'm thankful for and what I am blessed with:

1. I was diagnosed with cancer - but it was caught in an early stage and removed from my body in it's entirety.  So kiss my lilly white butt Big C!
2. I have a really great mom who is really great at taking care of me and I am so fortunate that she is so close by!  :)  I am sure this will come back to bite me in the butt at some point.  But that is what family is for, right?  :)
3. I have some really great friends who are also really good at taking care of me - not just physically - but spiritually and emotionally.  Friends I have had for ages that never leave my side even though they are miles away - and friends that God has deemed to put in my path just recently.  Friends I know more about than I should - and friends that I hardly know at all.
4. Apparently I needed some time to lay low.  I'm not great at that, but it is needed.  I have a great job that allows me the opportunity to do so.  I may complain about a lot of things at my job (I'm sure they will all come back to me just as soon as I go back to work), but having a full time job with good benefits is truly a God-send during times like this.  And I truly love most (wink, wink) of the people I work with.  They are a fantastic group of people.

Monday is coming!  I better go prepare for that onslaught.

Plan of Attack!

I am now more determined than ever to do the half marathon in Myrtle Beach in October.  The doctor has said that I am not allowed to run for 6 weeks post surgery, but that I can walk as much as I can tolerate.  So I am determined to walk every day - adding a little bit more distance to what I'm doing every day.  Yesterday I was able to get in just under a mile.  For my birthday this year I got new running shoes and I finally pulled them out yesterday and tried them out.  It is still a bit exhausting for me.  Doc had cautioned me that I would start to feel better physically pretty quickly because of the laparoscopic surgery, but that inside there was still quite a bit of adjusting happening as a result of my body getting used to having just one kidney.  So I get tired really easily right now.  But as I said - I'm determined to still do the half marathon in October.  So once I get to the point of being able to run in late July I will have to get very serious about my training plan in order to have my mileage up for that race.

Pathology Results

Dr. Jalkut called at the end of the day today with the pathology results of Elvira.  It was cancer.  It was a type of cancer called clear cell renal carcinoma.  It was staged at T1b.  Basically that means it was greater than 4cm across but less than 7 cm across (just barely) and was contained to just the kidney. There is a only a 10% chance that it will occur again.

As I said before - kidney cancer is generally resistant to chemo and radiation.  The bone scan and pulmonary CT have not shown a spread to anywhere else - so removing the kidney in it's entirety is the treatment of choice.  If it had spread to anything beyond the kidney - like to lymph nodes, etc... there might be some discussion of additional treatment in the form of chemo, but since there is no evidence of that we will just monitor things for the next few years.  It is widely believed that if you can make it 5 years without re-occurence your chances of it re-ocurring at all drop drastically.

So I see Dr. Jalkut 2 weeks post-op to check incisions, etc...  Then again at 6 weeks post-op where we will discuss the plan for monitoring.  The monitoring will be via x-rays and ct scans.  The first couple of years it will be more often - then will stretch out to every 6 months and then to once a year.

So I'm torn.  Of course, not happy that it's cancer, but glad that we got it all (or so it appears).  So does this mean I'm a cancer survivor?

Home Again

So not even 48 hours after having my kidney removed I was sent home from the hospital.  Kind of amazing to me.  I am very sore and have to be careful of not over-doing it.  Doc has put a moratorium on running for 6 weeks but is encouraging me to walk as much as I want.  I was warned to be careful in this heat, though - it would take it out of me much quicker than before.  I was walking the halls at the hospital as much as I could.  I just went up a couple of houses up the street a little bit ago with the girls.  The smallest things just totally wipe me out right now.  To be expected I guess - just have never been very good at laying low.  I don't have pathology results from Elvira back yet, but hope to by tomorrow.  Doc said he would call me as soon as he had them.  So now to get to the business of healing.

Post-Op

So I made it through surgery.  Dr. Jalkut was able to do it laproscopically.  Such a blessing.  He didn't see any spread to the areas around the kidney and was able to get the entire kidney out.  The tumor seemed to be contained in the kidney.  That is all we know now.  Will take pathology a while to do what they need to do for us to know anyting more about the tumor.

I have been on clear liquid diet today and am being moved to full liquids for dinner.  Hopefully will be at soft foods by morning.  We shall see.

I'm pretty sore - as can be expected.  Have had some visitors today which is always a thrill for me - makes the day go by much faster.

So thank you to everyone for your continued thoughts and prayers throughout all of this.

1 more day to go

So it's the day before surgery.

I am tired.  Physically, mentally, emotionally.  I just want this all to be over with.  I have been keeping myself busy with the day to day and with trying to plan for the weeks ahead.   The house got a deep clean this past weekend so that when I come home from the hospital I won't be looking around at everything and wanting to get up and clean. Of course, I have 3 small children and a husband - so chances are I will still want to get up and clean, but oh well. Working with my mom on plans for the kids this week so that she and my husband are free to spend as much time as they would like to at the hospital with me (see - it really is all about Pam).  In general - just keeping busy.

But at night it's hard to fall asleep

On the bright side - I've gotten wonderful phone calls, cards, even flower deliveries - from friends and family around the country.  I am a blessed and fortunate woman to be surrounded with such love.

So here is my most recent blessings post:

1. Fantastic doctors who take their committment to their patients seriously.
2. Family to take care of me.
3. Friends to love me.
4. Chest pain that lead the doctors to discover Elvira - hopefully early enough to remove her before she did even more damage.

The big question over the next 24 hours - how will Elvira be extracted? Will the doctor be able to do it laproscopically, or will he need to convert to a larger incision?  I will try to update the blog as soon as I can with details.  The earliest it will be will probably be Wednesday as the surgery on Tuesday is not until later in the afternoon.


Thanks to everyone for your thoughts and prayers over the next few days.  I covet and treasure them.

Pre-Op

I had my pre-op appointments today.  One with Dr. Jalkut to go over what they will actually do during the operation (lovely discussion on how they move my colon out of the way and such), and one at the hospital to meet with the anesthesiologist and have blood work done, etc....

Friends and family are taking bets on whether or not Dr. Jalkut will have to convert my laproscopic surgery into an open surgery.  I told Dr. Jalkut this and he says never to bet against the doctor.  He feels confident that he will be able to do it laproscopically.  Yeah - so did Dr. Yerby when he took my gallbladder out and I ended up with a 6 inch scar across my rib cage and a 5 day hospital stay.

But assuming he does do this laproscopically I will spend 2 nights at the hospital.  The surgery will likely be 4 hours long.  It is not scheduled to start until 1pm - so Tuesday could be a long day for all involved.  After surgery I will spend 2 hours in recovery before being taken to my room.  They will have me sitting up in a chair at some point Tuesday night.  Could be late, but they will have me up in a chair for a bit on Tuesday night.  Wednesday I will be expected to walk the halls at the hospital as much as I can.  I know from experience that walking - even a little bit at a time - really helps with recovery.  If the surgery is converted to an open procedure - I can expect a few more days in the hospital and it may take me a bit longer to become mobile.

The anesthesiologist (who I fondly refer to as The Candy Man) has arranged for me to have some good anti-anxiety medication while in pre-op waiting.  Yeah me!  Rex hospital has a policy that I am not to be fully sedated until Dr. Jalkut is in the operating room and all have witnessed him initial my right abdomen as the side where the kidney will be removed.  The anesthesiologist did say that I would need an A-line to monitor my heart rate during the surgery.  I had an A-line when I had my gastric bypass surgery.  That hurt something awful!  I asked if it was at all possible to have that put in after I was under.  He said yes.  I asked if he could be sure to write that down cause seriously - don't want to be awake for that again.  It's kind of like an IV - but much much worse.  It goes in a vein at your wrist and the catheter for it is very long and large.  They try to numb you before hand, but it really really really hurt when they put it in before.  I'm fairly sure I swore at the guy who put it in - he just smiled.  I'm pretty sure he enjoyed inflicting that pain.  The anesthesiologist today also said they may be putting in a central line IV after I am under as well.  They may be able to find an appropriate vein somewhere in another hand, but because of the position that I will be in during surgery (on my left side with the table lifted in the middle to kind of push my kidney up to where it can be more easily accessed) that may not be feasible.  Again - Yeah me!

I'm sure this has totally either bored or mortified half of you.  This is the kind of stuff that I tend to obsess over.  After having as many operations as I have had - I have to know all these kinds of details.  I think it feeds my need to feel some sort of control in a situation I have absolutely no control over.  If I can know and understand everything they are doing - I don't feel like I'm just being blown by the wind - I feel more like I'm participating - even though we all know I'm so not participating.  I'm unconscious on an operating table.  But I think that knowing all the ifs and buts about a particular scenario help me to not be overwhelmed and to feel more calm.  I know it would be the opposite for others - but for me - I thrive on this stuff.

I have also learned that it may be a bit difficult to put pants on for a while after surgery.  So I have been on the prowl for some cool sundresses to hang in afterwards.  Shop away the pain, my friends!  :)

Peace ... Or .... Denial ...

I have been getting lots of comments about how brave I am and how I am handling this so well.  What I can't figure out is if I am just at peace about all of this - or if I am so deep in the land of denial that I can't find my way out.

Sometimes I think I am just at peace - I just have this feeling deep in my soul that everything will be OK.  I probably have cancer and I am going to have my kidney out - and that's all OK.  God's in control.  I have another healthy kidney - it's all good.

And then there are the occassions ... which are few and far between ... where I am scared ... where I let myself cry ... where that word won't even come out of my mouth.

Is it possible to be both at peace and in total denial?  :)

Holding Pattern

I know - I was a blogging fool there for a hot minute and then kind of dropped off the face of the earth for a few days.  I am just in a holding pattern.  It's driving me crazy.  I know there's a lesson in here for me somewhere, but I have yet to discover it.  Just waiting for the surgery - waiting to evict Elvira - waiting for more unknown.

And while I am consumed by this - I find myself utterly sick of discussing it - and yet at the same time - unable to discuss anything else.

I took advantage of some of the extra time by cleaning my house.  Of course, with 3 kids, a husband, and 2 dogs - I will just have to do it again before the 15th.  :)

I am still trying to focus on my blessings through all of this - so here goes.

• Friends - coming out of the wood-work - to love on me, pray for me, support me and my family through this.  I am constantly amazed by how truly blessed I am in this department.
• School is out!  I am enjoying a somewhat slower pace of life with the kids - not having to worry about homework or reports or projects that are due.  June keeps the kids pretty busy with various mini camps and VBS and I'm hoping that will be helpful when surgery comes up - to keep them pre-occupied with other things and not really having to deal with mom having another surgery.
• I know that something good will come of all of this - even this holding pattern that I am loathing at the moment.  God has something in it for me and for my family.

Bone Scan Results

Dr. Jalkut called me today (yes, on a Saturday) to let me know that the results of my bone scan were "perfect".  That is a huge weight lifted from our shoulders.

So what does this mean?  Well, combined with the fact that my pulmonary CT scan looked clear it means that whatever this mass is - it looks like it has not spread of metastisized.  Dr. Jalkut also said that the abdominal CT scan did not show any enlarged lymph nodes - also a good sign.  Removing the kidney and the mass that has attached itself to it should be the only treatment I need. 

Thank you very much for all your prayers.

Explanations

So I think we have some explanations for why the surgery is not as soon as we would like it to be.  My darling husband made some phone calls today and threw a few hissy fits with a few people (I have trained him well).

First he called Dr. Jalkut's office and talked to the scheduler.  He was nice about it, but he voiced his concern about telling me I basically have cancer, but then pushing surgery out 3 weeks.  The scheduler understood his frustration and offered to pass a message along to Dr. Jalkut. 

Dr. Jalkut himself called Daren back.  He was very understanding of our frustration and explained that the reason he could not do it until June 15 is because he really wanted a particular partner in his office to be in the surgery with him.  He is concerned about my previous surgeries - particulary my gastric bypass - and the challenge that will present to him to remove my kidney.  He really wants another surgeon in the OR with him to assist him with the unique challenges that may present.  With that being said - coordinating his schedule with his partner and the OR - this was the quickest they could get that scheduled.  He even recheduled all of his clinic appointments for that day so that he could do this surgery.  He could get me in sooner, but would only have a PA to assist him in the OR - and he very much wanted his partner in there.

So really - how can I be upset with that??? 

Hubby also called Dr. Bloom to "chat".  :)  Dr. Bloom and Dr. Jalkut talked and then Dr. Bloom called us.  We go the same story.  We also got reassurances from both doctors that this tumor has probably been there a long time and while they realize it's hard to wait and upsetting - it won't change much in that time and neither will the prognosis.

So I guess it is what it is.  I've never been very good at patience.  It appears I need another lesson in it or something.  Whatfrekinever.

So my bone scan is in the morning tomorrow.  Really wishing I had a kindle right about now to help me pass the time while I wait around.  :)  May have to smuggle my mom's MiFi gadget so I can at least surf the web while I wait.  Maybe I'll catch some of you on FB tomorrow!  :)

Surgery is scheduled

So Dr. Jalkut's office called right after my EGD this morning with my surgery date and details.  June 15.

Yes - that is pretty far out.

No - I'm not happy about it.

She asked if that date worked for me.  I said "Well, I was really hoping it would be sooner and was led to believe it would be."  She said this was the first available and Dr. Jalkut reserved it specifically for me because they had a cancellation that day - so he put my name in there himself.

It looks like hurry up and wait is the name of the game.

I have pre-op appointment with Dr. Jalkut and at the hospital on June 10.

Mmmmmmmmmm Propofol

So Propofol is my new best friend!

I had my upper endoscopy this morning.  Apparently they now use propofol when they do the EGD.  So less chance of you waking up or of them needing to wake you up.  And I dreamed!  I have no idea about what - but I know I dreamed and it was pretty cool.  And then I woke up and I felt fine.  I wasn't hung over and after about 30 minutes I wasn't even that tired.

It went well.  Dr. Hutzenbuhler didn't find anything she was concerned about.  She took some biopsies, but expects them to be fine.  I even got some really cool pictures!  Yeah!  (I think that is the propofol talking.)

As they were prepping me for the procedure you have to answer all those medical questions.  That always takes forever for me.  Yes I have had previous surgeries ... ready?  No really ... ready?  And we list those.  Any family history of ...?  Yup - ready?  And today we had to add the whole discussion of  "Oh, yeah, and by the way - I have a renal mass that I'm waiting to have removed."  UGH.

And, of course, I had to have this conversation with several people.  First the nurse, then the anesthetist.  The anesthetist asked me about the note about the renal mass.  I gave him the run down.  He was very nice and re-assuring that renal cell carcinoma (if it hasn't spread) is very treatable.  Then he grabbed my hand in his and closed his eyes and said a silent prayer for me for just a few seconds.  I smiled and said thank you.  He left my curtained area.  And then ... for the first time since I was told about Elvira ... I cried.

The Wrath of Pam

I'm so frustrated.  They still have not scheduled my surgery.  I called twice yesterday and this morning my husband called.  Today we got two excuses: one was that Dr. Jalkut has my file and has to write something up for the surgery before they can schedule it, and the other is that he wants to see the bone scan before he schedules the surgery.

Whatever - both of these contradict what he told me in person on Monday.  He said if he could do it on Tuesday - he would.  He said that surgery would be scheduled quickly.  Two days later is not quickly in my book.

And thus ... The Wrath of Pam.

So I called Dr. Bloom and told on him!  :)  So now Dr. Bloom and his nurse have both called over there to inquire about when I will be scheduled as well.

If I don't hear from them in the morning tomorrow - all hell will be breaking loose. 

Well, kinda.  I have my upper endoscopy tomorrow morning.  I have to be at the endoscopy center at 8:00am.  So I will probably be quite out of it tomorrow morning and well into the afternoon.  HHHHMMMMM .... The Wrath of Pam on versed ... this could be interesting.

But I am going to be persistent ... cause that's how I roll.  You've basically told me I have cancer.  You know when the bone scan is - and you know that you will have the results the same day - so put me on the freakin' OR schedule!  The trick is how do I do this with some level of decorum - seeing as how they do hold my kidney (damaged as it is) in their hands.

And speaking of the upper endoscopy.  I would rather have my kidney out than have another upper endoscopy.  Why?  Because the last time I had one they had to wake me up in the middle of it.  So instead of not remembering the procedure - I have very vivid memories of it - not fun to be awake while they stick a camera down your throat and into your stomach.  Hopefully, because I have lost so much weight and because I have a different doctor, this time will be a much better experience.

So I wish I had a better update to give you - this is today's update.  Watch out - Pam is on the warpath until she gets this surgery scheduled.

Bone Scan

OK - so I have my bone scan scheduled for Friday morning.  My understanding is this scan can take several hours - a lot of that waiting around time involved in that.  So there goes my Friday.

So, obviously, not going to have surgery this week.  Still waiting for that to be scheduled.  Apparently, Dr. Jalkut needs to write something up for the surgery before he gives it to the scheduler.  He has my file in his office and is working on it is what I'm being told.

So I still have an upper endoscopy scheduled for Thursday morning.  We are keeping that appointment because I am still having pretty persistent chest pain and we want to get to the bottom of it.  I'm beginning to believe it really could be stress or anxiety ... so bring on the Xanax baby!  :)  To be honest, I would rather have my kidney out than have an upper endsocopy.  The last time I had one they had to wake me up in the middle of it because I was gagging too much and they couldn't get the camera down far enough - so they had to wake me up with the camera half way down and get me to calm down (yeah right!) and breath through my nose so that they could progress the camera.  Most people don't remember their EGD's - I remember almost my entire EGD with vivid memory.  Not fun.  But I do hope to get some answers to this chest pain.

Since I will not have had my surgery by this weekend - I'm thinking I should really send Elvira off with a bang!  Ride this kidney hard while I have it!  :)  We'll see what I can conjur up!

Birthday Blessings

In the midst of all this ....  well it's not appropriate for me to use the words I am really thinking at the moment to describe what all "this" is ... but in the midst of all of it - here are my blessings.

1. Have I mentioned the great team of doctors I have?  Dr. Bloom, Dr. Jalkut, and Dr. Hutzenbuhler.  I think I hit the jackpot here.
2. Have I mentioned that I have some really kick ass friends?  RAMP in particular - you know who you are.  As Rebecca has said - I need RAMP time like I need air.  But it's not just RAMP - I have some great friends who lift me up in prayer, lift me up with encouragement, just lift me up in general.  Some old - some new.
3. My family - I am fortunate enough to have my parents living in my yard. Their support and encouragement is tremendous.  Then there's my sweet husband.  It's all OK.  We'll get through this together.  And my children - who keep me grounded and humble above all else.
4. I have been told by each one of my doctors to be thankful for the chest pain I have been having.  So as annoying as it is - I am thankful for it.  It led them to discover Elvira and she had been very quietly just waiting in the wings for her chance to shine.  I would still like to find out the source of the chest pain - cause it's still there.  Listening more to the theory that it's anxiety than I had before.  It may be that my body is anxious and my head has not caught up yet.  :)
5. Facebook.  Yes, I'm addicted.  But I'm also thankful for it - for a way to reach out to those in my life - past and present.  And also a way for them to reach out to me.  The words of encouragement that I have received the past few days have been like a salve to my soul.

So I am focusing on my blessings today.  Happy Birthday to me.

Accepting Help

A lot of people have been asking how they can help.  I am so bad at this question.  I hate asking for help and I just don't know how to answer when people ask how they can help.  I know that people want to help and I know that I probably could use help - and I'm just bad at this - just so plain bad.

So I have a couple of names of people you can contact if you do want to help out in any way.  You can contact my mom, Pat Dempsey (click on her name for her email), or Marsha Daniel (click on her name for the email).  They are also on Facebook and you can contact them through there as well.  I have a feeling these wonderful women will be more knowledgeable about what my needs are than even I will.

So I apologize if you have asked how you can help and I've blown you off. I just don't do this well.

The New 90/10 Rule

OK - so Dr. Jalkut is one of my new favorite doctors.  :)  Let's see if I can recap my appointment with him this afternoon.

• 90% chance that this is kidney cancer - WHOA!
• I will be having surgery soon - haven't gotten it scheduled yet.  He said if he could do it tomorrow he would.  Kinda glad it's not tomorrow - that's my birthday.  But it will probably be later this week or next week.
• He will remove my entire kidney. 
• He will not biopsy the mass as he has seen where during a biopsy they actually spread the cancer from the tumor and the person died of kidney cancer.  So no biopsy - just be done with the kidney since my left kidney looks very healthy.
• Need 2 things before surgery - a pulmonary CT Scan (which I just had done in the ER a few weeks ago - so they will just get that one) and a bone scan to see if the cancer has metastisized to either the lungs or the bone.
• Will try to do the surgery laproscopically, but with my history of many abdominal surgeries - that may not be possible.  If the surgery is laproscopic - 2-3 days in the hospital with 2-3 week recovery.  If it's open - 5-7 days in the hospital with 6-8 week recovery.

I think that's it.  Just waiting for the office to call with the appointment for the bone scan, surgery, and my pre-op appointment with Dr. Jalkut.

Named the "thing"

So, in keeping with my theme of naming body parts or things in my body - I have name "it".  It shall henceforth be referred to as .... Elvira.

I am thinking she won't be with me long.  She will have to get to stepping pretty soon.