Tag Archives: kidney cancer

06.24.15
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A day past two weeks…

I’ve read everything I could get my hands on in order to adequately prepare for my nephrectomy recovery.  4 weeks seems to be the magic number for returning to work.  Exhaustion and muscle pain are often mentioned…but I swear i didn’t  think it would happen that way with me… low and behold…here I am.  Also fighting an occasional mental demon.

He pulled the camper home this week so we could get it cleaned up and do some camping this year.  It has been two summers and I’m ready.  Washed all the sheets, blankets and towels…he’s going to vacuum up dead bugs and we will be ready!  I’m glad we put it away clean and organized last time we used it.  Makes a huge difference. it’s a hybrid camper.  Everything is stationary except the two queen beds which pull down on each end.


Life will be back to normal soon.

Until next time….

06.19.15
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narcotics, marijuana and mind your own business

I’m not a drinker of the bubbly.  I don’t see the purpose. 1) I do not like to NOT be in control of me. 2) If I’m going to drink something, it is going to taste good.  Personal preference.  I am going to put it out there that I believe without question that alcohol consumption is causing most of the grief and pain in our society…no less, in fact,  than the use of controlled substances and narcotics used by many to make their life palatable.

Until the residual crud from kidney cancer surgery, I have used very few prescription narcotics for pain relief.  I’m very afraid of the habitual affect of these pain relievers.  I received several lectures while in the hospital that relieving the pain after surgery is not just for comfort but actually aids in recovery because if the pain is restricting deep breaths or getting out of bed, things are not going to go well.  The morning after surgery, one of the nurses I adored walked into the room and said.  Nina…push that morphine button now.  They hooked me up with the morphine self medicator…apparently I was  low on the compliance scale…I was high the rest of the morning until they switched me to oral pain meds.  While I can say that the pain was low and my personality apparently uninhibited, its not how I would want to go through my normal life.  BTW I’m still using an occasional pain pill this 2nd week after surgery.  Sometimes it just feels good to not have to worry about whether this or that is going to cause me pain.  No Guilt.  The nurse told me that is why the surgeon sends you home with a prescription….and I finally believe her.

With that being said.  Come on Missouri…legalize MJ.  I’ve been surrounded by the seeds-in-the-ashtray arrest mentality for 30 years…  Occasionally, I”m sure a good nasty drug bust happens because someone found MJ seeds or stems in someone’s trash…but these personal use MJ busts are not working…criminalizing normal people for smoking a little weed just infuriates me.  I haven’t smoked a joint since I was about 24 years old.  You do the math.  I’m in the minority.  I would venture a guess that there are more people, of every age, smoking pot regularly now than smoking cigarettes.

So…come on lawmakers, put down your bong and vote yes to legalize marijuana…and then pass me a joint, please.

Until next time….

06.14.15
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Who knew this would creep up on me….

Today I’m easily irritated.  Not feeling overly great…Just below mid-sternum I have a muscle that causes me great pain when I do some things.  I have no idea what those some things are going to be.  And if I continue doing those things for 1/2 second I get a pulling, tearing type pain that pisses me off so much I have to reach up and be sure there is no gas exiting my ears….having taken a U turn because it could not get out the correct exit route.

My pain pills have become worthless for this pain for some reason……and my absolutely perfect him…aka the pill nazi…seems to be having a cannot compute day because logically – this is suppose to happen and this is supposed to happen…and it isn’t happening.  I know he is trying to save me from myself but today should have been one of those days I lock myself in the bedroom with the internet and TV remote and stew in my own juices.

So…I’m cancer free….I didn’t expect this short fuse to anger…Here’s my table next to the davenport in the living room.

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I watched nearly a whole season of of Grace and Frankie on Netflix…I sat outside and appreciated the beauty of my flowers.

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I sat on the deck and watched the peacefulness of the geese.

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and in an hour I was back inside because of rain and wind.

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That’s been my day…now my daughter has just suggested I might need to take some xanax.

Until next time…

06.13.15
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If only we were all the same so we would know what to expect?

I remember the exact feeling I had when I heard the words…and we found an 8cm mass on your left kidney which we believe is malignant.  He and Jenny were in the room but I was sitting cross legged on the exam table and I saw and I heard white noise.  I’m not sure if my reaction would have been different had I been alone in the room with the doctor…I just knew at that moment, I didn’t want to communicate, I didn’t want to say anything, I wanted to just listen to my synapse which at the moment were just humming as they were trying to make a nerve junction up there; but, they had not been forced to make the same connection since 2001 when my Dad died.  I wonder if it would have been better had there been an app for that?

I had plenty of time between diagnosis and surgery to think.  At first, I read a lot of the medical web sites from Mayo to Web MD.  I did not read a lot of opinions and stories from the general public.  I knew that my situation was unique and I would not learn anymore about my situation no matter how many also unique opinions and unique circumstances I allowed to complicate my thinking process.  I finally found the Kidney survivor’s website on Facebook…it seems to be pretty matter of fact…not so many opinions rather individual stories in their own brief words.  This helped me the most.    There seemed to be a random enough mixture of stories to make anything seem possible.  From the very worst – to the very best outcomes….and a room full of support for everything in between.

I’m now 4 days post nephrectomy.  I have one angry little incision for which I require my pain pill…a lot of other little plugged holes still have some discomfort – but there is a difference in pain tolerance.  The pain I’m feeling right now on THE scale might be a 3 or 4.  4 days ago, I might have rated the pain a 6 or 7.  There are probably no 2 people with exactly the same response and thoughts about this major event which will be a yardstick in our timeline.  All of the before and after I was diagnosed with cancer life marker.  There is nothing out there to read which will tell you what is going to happen to you.  It is an abyss from which we are supposed to draw strength from within ourselves and live each day a little better than the day before.

Until next time….

06.12.15
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Total Reality Check…and not a pretty picture included in this post…..

I’m a member of a kidney cancer survivor group on Facebook.  It is a very supportive, non dramatic place to connect, ask questions and feel not totally alone in your disease.  Between the group and what I learned about living with cancer from my friend, Tracy, I decided to go ahead and put my recent kidney cancer diagnosis and nephrectomy on here for anyone or should that be everyone experiencing the unknown.

if you have been reading ninasusan.com in the last 3 months, you already know that I was in Belize In a non tourist town with an astoundingly apparent lack of medical care, when I starting having extreme abdominal pain. I made it through 2 days in Belize and a very long airplane ride home before I found myself in the ER in Lee’s Summit.  I was expecting just about anything from the CT scan other than a diverticulitis abscess and oh by the way an 8cm mass on your left kidney which we think is malignant.  that was March 9, my 59th birthday.

After a picc line insertion and self administering  heavy antibiotics for 4 weeks, I finally received the all clear…call your urologist and get that kidney out.  It was another 6 weeks.  Exactly 3 months between diagnosis and removal.

let’s just get on with the nephrectomy..

If you have had a colonoscopy, that is what you can expect from the day before/night before cleanse.  If you haven’t had a colonoscopy, suffice it to say things will come out of your colon from the day you first started eating solid foods.  It’s not something I would do on a boring Saturday night, but I don’t  find the experience to be horrible.

Morning of surgery, you tell no less than 25 people your name and date of birth and why you are there in your own words.  It was mildly irritating but I was thankful that everyone in the hospital who made eye contact with me knew exactly what I was going thru.  He, my girls and Jax crammed into a room the size of my bathroom to wait out the 2 hours.  this was, in fact a blessing, with the exception of Jax’s dirty diaper.



Arrival in the OR is Cold.  Everyone stops their little jobs, acknowledges you, tells you their name and what they will be doing to you….meanwhile body parts on both sides of your body are being moved around into position…the anesthesiologist has had a few cups of coffee, makes a couple of jokes, put something in the IV and the next thing I know there is a round faced guy in scrubs talking to me about something or he may have been talking to someone else, or he may not have been talking at all but he was unhooking various plumbing parts.  Then with a blink of an eye, I’m racing through the halls of Iowa Methodist Hospital on a gurney at Mach speed feeling pretty damn good!

Here’s the picture


I was in considerable pain for the first 3 hours but not because of anything above.  Because of the carbon dioxide pumped into the abdominal area so the surgeon can see what is going on.  I had a robotic removal of my left kidney with 4 holes and the masterpiece center which was made to pull my almost 8cm kidney With tumor, adrenal gland and fat through.

I’m here to tell you 4 days post surgery.  DO NOT Be brave…take your pain medication and get your ass out of bed and walk because the best thing that can happen to you is to have a barn burner fart to empty your shoulder cavities of the carbon dioxide.  just so you know, about midway thru this blog, I stood up and waved an American flag because I thought this was going to be the ending of the pain, finally….but not yet.  Long, voracious, drawn out loud farting is what you begin to live for.

post nephrectomy, you need a recliner to sleep in, a heating pad for your shoulders, ice packs….lots of ice packs to numb your abdominal area, colase to soften the bowels that you know are coming……and the love and support of your family and friends…..and I’m here for you.  Email anytime…I’m here to help you cope!

until next time…..

06.08.15
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….and now there are two

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Before I share my Alfred Hitchcock fear, I must share this picture of Katy and Adam.  Riding horses on her birthday.  She is so darn cute!

So…yesterday…the cats set up guard on the dining room table….a baby bluejay found his wings and made it over to the back of the front porch rocker.

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Mama or probably Daddy did not like the fact that I was moving around in my own front yard, for crying out loud.

Today, I thought – oh…he’s back

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NO  TODAY THERE ARE TWO

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Isn’t this how it began for Tippi Hedran and Rod Taylor back in 1963?

Surgery is tomorrow.  I’m ready!  Good vibes, thoughts, prayers filling the universe are appreciated!

Until next time…..

05.27.15
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The breakfast of champions….

https://welcometodementialand.wordpress.com/

I have shared a couple of these blogs on my page recently.  Actually I can’t remember now how I found her wordpress page…she has a wonderful take on dementia and alzheimers and should be a regular read for anyone who is living with someone with the disease.  I have a 6 degrees of separation with the author although I didn’t know it when I started following her.  I worked with her father-in-law for many, many years – he is a Lt with the Newton, Iowa Police Department and I was his dispatcher and loved to tell him where to go on a daily basis.  I love these small world events!

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Here’s my breakfast.  He made me the juice this morning with Kale, spinach, cabbage, carrot and apple.  It is actually quite tasty and I find the more good green food I eat, the better it tastes.  Next to my juice is my 1000mg Turmeric from Dr Piva, my chiropractor and acupuncturist, my starbucks from my keurig and my great protein two handful almond breakfast.

I sometimes wonder if the universe brings the people with cancer diagnosis together.  I recently learned a friend of mine now has a cancer diagnosis.  We have been messaging each other with the details of our individual cancer fights…and our disbelief that this could happen to us.  She is a fighter and these little connections with like minded friends really helps keep the attitude positive and like a 3 mile walk – keeps me energized.

It’s a beautiful sunny day today!

Until next time…..

05.26.15
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Having a reading nest….

  

Laying in bed this morning, listening to the morning floor creaks and his morning habits, I felt the need to delve into why he likes to wake up and immediately have both feet on the floor; and how I like to lay there and move my legs around the disheveled sheets searching for a cool spot, rotate my pillow around, catch up on Facebook, etc and wake up.  I came up with no answers.

I have a tendency to do exactly opposite of what I’ve always read.  Bed should be for sleeping…do not make your bed the place you watch tv, eat, read and nest.  Oops.  While I’m not a “napper” unless I’m sick, once I’m up….I’m up…but…occasionally I’ll walk into our room, glance at the bed and have that comforted feeling.  I don’t think that is wrong.

Today, I mixed it up a bit and found my reading spot for the day.  On the front side of the house.  It is shady, there is an amazing cool breeze and the only real NOISE is the multitude of birds all trying to talk at once.  I’m not really a bird person…okay…I really never notice birds other than when I want to scream SHUTUP!  The rustling of the breeze through the leaves makes it okay.

2 weeks from today, probably around this time 10:30 am, I’ll be going under the knife.  Just thru that in because it is on my mind.  Otherwise, I’m just going to be in love with this day!

Until next time…..

05.25.15
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That slo-mo time between diagnosis and surgery..

I’m not exactly sure where I’ve drawn from to make it between March 9 to June 9….kidney cancer diagnosis day to scheduled surgery day.  I’ve had two “on the ledge” days where I had to lean on someone else to make it through the agonizing fear and the sobs….and I will say the extra special diagnosis of a diverticulitis abscess which also could have killed me had me literally dragging one foot behind the other…but right now…today…sitting on the deck with a breeze which threatens the table umbrella.  I’m doing well!

I’ve learned that I am misunderstood by family.  I am the only one actually sitting here with kidney cancer slowly growing in my left kidney.  But, I’m realizing the impact this cancer has on the psych of my family and friends.  I learned from a very young age from my Dad that you try to plan for every possibility.  While I realize, and I’m sure he did, that this is really not possible, I think the process is very important.

As I go about my day, I think of things I need to do to prepare me for surgery…other than sending good, happy vibes to the surgeon and/or his robotic friend.  At this point, I still don’t know if they will be able to take it laparoscopically or if they will have to open me up…this decision won’t be made until they are in….but my care and life after surgery will not be the same depending on the treatment….so I plan ahead.  I have to have in my mind where to get an abdominal wrap, whether I will be down 1 week or 6, I want him to know where the passwords are…what bills are paid automatically, will I have to go back and forth to Des Moines for after care.  I ask these questions out loud and roll them off the brains of those close to me.  They perhaps interpret that I’m worried.  I’m not worried.  I’m optimistic, I’m confident and I’m preparing, I’m actually feeling strong mentally and physically….And if there is a hitch in the plan.  We all will deal with it!

until next time….

05.05.15
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It probably not kidney cancer that will get me….

I was sitting “indian” style on the exam table in the ER on my 59th birthday when the doc told me that I have a large tumor on my left kidney and it is most likely malignant…but first we need to get this diverticulitis abscess taken care of.  He and Jenny were in the room with me and they had, what I believe, was the typical reaction to learning someone you love probably has cancer.  I’m not sure what I felt…my immediate reaction was well, okay, guess we will have to deal with it.  The thought also crossed my mind that I probably won’t realize my big fear of the girls having to deal with dementia and me.  His mother has very few, if any, real lucid moments.  Gena’s mom just entered a nursing home because the family was no longer able to safely care for her and her dementia.  I just never wanted my family to have to live with this burden.  But I also didn’t want to live to be 91 years old, sad, depressed, hurting and unable to die because I was so afraid…. and be completely lucid. After they moved me to my room that night, I had my shock meltdown with an angel of a nurse.  Because of pain and medication, it was several weeks before I had another “I’m not ready to die” breakdown.  I called upon my girls to talk me down off the ledge that night.  For the most part, I’ve felt genuinely positive and strong until I woke up Sunday morning…I was totally pissed off.  I think because my dreams have been angry and frustrated, my sub conscious may be dealing with some thoughts and emotions that I have not allowed to surface. I belong to a Facebook kidney cancer survivor’s group.  I decided that I was going to stay off the internet and allow my emotions to occur by what is going on with me and not the worst case  percentages found on the internet.  For the most part, I’m getting positive feedback from this survivor’s group and I’m sure I will appreciate them more when I’m actually going through surgery, physically recovering and living with the pathology. Yesterday, Jenny reminded me that I still have better than a 10 percent chance that this isn’t cancer – but due to the size, it is highly likely.  She reminded me that the doctors have said they believe it is contained in my kidney and not metastasized …. that the fact is kidney cancer probably won’t be what kills me… and she pointed out the fact that I could be walking around the pond, slip, hit my head on a rock and drown. I have not worried about that before!!! Until next time….