Four Months

As I was poking around my scar this morning, I realized that today is the 4 month mark post nephrectomy.  Palpating the skin around my scar has become a weird obsession for me.  Since he mentioned this little ritual to my gorgeous urologist a couple of months ago, I mostly do it in private.  The sensation of being totally numb on the medial side of the scar is similar to having your mouth numbed with novocaine…I was told that eventually most of the feeling will come back once the nerves connect again.  No pictures this time but I have continued to use frankincense only on the upper 1/2 of the scar as my own little experiment to see if it really works.. It works so I’m also putting it on the lower half of the scar.  My own little experiments like when I was around 12, I used two different deodorants in my armpits…and so I would know which was which, I marked an S for Secret and the first letter of the other one.  S apparently worked the best because that is what I regularly use…but the point is, it so happened I had a doctor appointment – he asked me what my letters meant and when I told him in my 12 year old shyness – he laughed.  I get it now but at the time I was crushed with embarrassment!

My other experiment has been with essential oils by do terra along with their vitamin regime and turmeric.  I have taken one tylenol in the last 4 months for arthritis pain/headache.  I was very, very skeptical of the vitamin program but I am totally convinced it works for the betterment of my health.  I have no pain!  It is amazing.  I use the essential oils other than frankincense as needed.  Peppermint essential oil should be on every one’s list of must haves.  Temple, forehead and sometimes under the nose for almost instant decongesting of the sinuses.  I found oregano and black pepper also good for muscle and skeletal pain…perhaps not a plus for cuddling.  The other night, we were watching TV by candlelight.  He mentioned that all he could think about was pizza.  uh huh!

Every single day I’m thankful for diverticulitis…otherwise there would still be cancer growing in my kidney and I could be on the paved road downhill to the end.

Until next time….

Frankincense and the scar

Now just over 3 months out from kidney cancer surgery, I wanted to update my scar after using frankincense on it every day

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For the last two months I have been using the essential oil on the top half of the scar and nothing on the bottom half.  The difference is remarkable.  Here’s a 3-fer picture.

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I’m pretty impressed.  I use it neat..aka without coconut oil..a couple of drops on my finger.

Until next time.

Nephrectomy….today is the one month mark

…and today I am finally feeling almost normal.  Looking back on the ordeal, I have these little tidbits of wisdom.

  • an organ was cut out, cut yourself a break and rest
  • keep ahead of the pain with the narcotic pain relievers once you get home
  • use a stool softener
  • ice, ice, ice the incision sites (I had my kidney removed laparoscopically  and have 3 punctures and a 3″ incision)
  • if you have a recliner – use it.  Sleeping the first few nights in the recliner is a pain saver
  • drink lots of plain water to keep the plumbing in good working order
  • walk as much as you can.  It does make a difference!
  • have a pillow handy to grab for sneezes, coughs and unexpected movement
  • get a velcro belly belt and wear it!  I wore mine for almost 4 weeks and it helps!!!
  • know that you will heal…the pain does not last forever.
  • If you do not have a good support system nearby, find an online group with which to participate.  It helps to compare notes and know that you are not alone in your misery.

I hope this helps someone…I know a lot of people are asking questions and seeking information because the fact that we have kidney cancer is scary enough.

Until next time….

I woke up sleeping on my left side….

Two weeks and 5 days since my nephrectomy, I woke up in my favored sleeping position – on my left side.  It was just two days ago I whined to myself that if I could just turn over on my left side I could go to sleep.  This past week I’ve also been waking up in the morning a little nauseated and with no appetite…throw in a little dizziness throughout the day, I may be dehydrated.  It seemed I was drinking a lot of water but when I got on line I realized that I was not drinking 1/2 my body weight in ounces…and there is no way I’m going to share with you how many ounces that should be.  So…to my fellow nephrectomy peeps…drink up.

Against my better judgement, he and I went to the auction Friday night.  I was pretty tired from doing mostly nothing but wanted to get out of the house.  I realized just taking a shower, doing my hair and face that  I was tired but there were things to buy in my future!

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I got two of these.  Made in Italy…I’m assuming tole…candle holders…I love them so much I can’t stop looking at them….and I got them for a fraction of what they are worth…It is probably going to require a wall redo…but so worth it…and I just know he agrees.

and this huge brown crock.  This thing is huge and heavy.  I could probably use it to make a year of sauerkraut for the family…hahahaha…or I could use it for a decoration.

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He’s golfing today in a tournament…I have the house to myself…need to get laundry done…he worked hard on the camper yesterday – it is clean and ready to go.  I’m content.  Life is good.

Until next time…..

The Belly Belt…..

Please excuse the outfit in this picture…it is the retirement look on a blistering hot day in Missouri.

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I’m 2 weeks and 2 days post nephrectomy!

This belly belt is amazing.  Jenny got it for herself after her pregnancy and loaned it to me for after surgery.  I am not kidding when I say that I wasn’t sure it would go around me with all of the air bloat and swelling when I left the hospital, but I”m not sure I could have made the 4 hour car trip home without it. I wear it every day now and only take a couple tylenol in the morning.  When I go out, I wear it under my clothes!  It holds the innards in so you don’t have to worry about feeling that feeling of things moving around and also is wonderful when you don’t have time to grab for a pillow for a cough or sneeze.

Just wanted to pass my joy on to help others…

Until next time…..

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…..

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….

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….