LOOKING UP!

I am feeling so much better!!!  My back is not as bad as it was, and the new dose of chemo is tolerable so far.  I went to my primary oncologist at the Sacred Heart Cancer Center yesterday.  He believes the pain in my lower back is coming from an irritated sciatic nerve and arranged physical therapy.

I have emotionally felt much better, also.  I was able to finish up the last oil painting of a series I did for my son, Travis and his girlfriend, Bobbie Sue.  They are paintings of their "children."   I had never used oils in painting, and to be honest, I hadn't picked up a brush and painted in years.  It was fun and a good way to express some pinned up creativity.

This is their cat, Ella.  I'll post the other two paintings of their dogs as soon as I locate the file I saved them in. LOL

CONTINUING TO REARRANGE MY REALITY

It's been a while since my last post.  To be honest with you, I was waiting until I felt better.  I wanted to be in a better frame of mind.  I don't want this blog to turn into just a diary of negative thoughts and moments.  Then I realized, I am defeating one of my main purposes of the blog.  To tell my experience. To express my thoughts and feelings as I live this unplanned, unknown reality.

Janet and I went back to Mayo on Monday, Sept. 16th.   After lab work showed my platelets had increased, Dr. Shah felt it was safe to go ahead and place me back on the treatment.  That made me very happy in some ways, yet in others, it caused dread.  I had begun feeling physically drained before I was taken off of the treatment.  After many days off of the med, I started regaining my strength.  I did not want to feel that weak, unmotivated feeling again.  I am on a less dose of the Pazopanib now, so I'm hoping it is less draining on my body.

Since my last post, depression hit me really hard. Initially, I felt better being off the treatment, however, I couldn't stop dwelling on death, dying, and missing family, friends, and pets. It kept looping round and round until thoughts of suicide wandered in and visited BRIEFLY.  I wouldn't commit suicide, but I finally could understand it in others who have felt too much pain. I wasn't in excrutiating pain or anything like that, but what if I am someday? I don't have an answer, however I hope to trust the medical community for adequate supplies of pain killer.

Now that I have prayed and asked for help, help has arrived.  It's funny how much more you pray when you're scared, hurt, heartbroken, or been told you have an incurable disease. I pray these days. I grew up in a household with years of Lutheran teachings and some of Seventh Day Adventist. Later, I totally revoked anything having to do with religion and Christianity due to an experience I had with a group of born-again somebodies in my twenties. I had them telling me what I SHOULD believe. I watched them speaking in tongues and claiming the power of God spoke through them.

To make a long story short, I have come to believe "God" or "a higher power" resides more within me than within others to translate for me.  My eyes were finally off of people and my trust now came from my own direct contact with the higher power. I no longer look to people to explain God to me.

As I said earlier, my prayer was answered because my depression lifted. I was so relieved and looked forward to a better week.  However, Tuesday, I awoke in the middle of the night to terrible back pains. Yes, back pains! The same type of back pains that took me to the hospital when I received my initial diagnosis.  But I don't believe the back pains come from the cancer. I just think that my lower back is out of whack.  I see my oncologist, here in Eau Claire, this Thursday. I hope something can be done.

I can't help but also think, "what if?"  What if the cancer is spreading rapidly - instead of decreasing. Maybe it got into my bones. I don't like to think that way too long though because . . . what if I can wish it to happen by thinking about it negatively. It's so hard to control all the thoughts that invade my mind.  I can't win really. At this point though, I do my best in CHOOSING not to believe that the cancer has spread - and just know that my back will be better with time. As usual.

ROLLER COASTER vs. CAROUSEL

September has really had it's ups and downs for me.  I've never been much of a fan of roller coasters and have found myself wanting to scream, "I want off this ride!" more than once over the last week or so.

We went back for lab work and an ECG at Mayo on Wednesday.  I met with Dr. Shah afterwards and he said my platelets had dropped greatly.  After hearing how weak and fatigued I have been feeling, he and the other oncologists decided I should come off the Pazopanib for 12 days.  This should allow my platelets to restore and my strength.  I go back to the Mayo Clinic on September 16th for more lab work, and if things have improved, I will go back on Pazopanib, but at a lower dose.

When he first said they would be taking me off the medication I was so scared I was no longer going to be in the clinical study.  I was also afraid this would wreck any progress the med had made on my cancer for the last month.  He quickly assured me this was just a temporary adjustment, which they have to do all the time with patients involved with clinical studies.  He also said, the amount of time I am off Pazopanib will have little effect, if any, to what it may have accomplished so far.  It takes more than 7 days for this med to get out of my system.  He went on to explain that their goal is to see if this type of chemo will work on Sarcomatoid RCC, but in that, they want to make sure I am experiencing a good quality of life with no damaging or debilitating side effects.

After all this sunk in, I felt much relief and somewhat happy they removed me from the med for a while. The last week, or so, had been pretty rough, physically and emotionally.  I can't describe how weak, tired, and down I had been.  I guess my last post gave you insight into that world!

I am happy to report, I have been off Pazopanib for 5 days now and I started feeling better yesterday.  I had more strength, stamina, and good thoughts.  My greatest hope is that when I start receiving the med again, at a lower dose, it will be enough to attack my cancer and leave me feeling like I'm off of the roller coaster and on a carousel!!

I AM SO MAD!

Damn, I am so mad and so angry, so depressed and so weak. I can't stop my thoughts today and I have dwelled in the negative light. Sometimes I am relieved for awhile after I display all the turmoil inside me. I hope I get relief from these thoughts. I love my partner Janet Soooo much. I do not want to leave her and I never thought that when we bought our dog, that I might actually die - before her. I can't bear thinking about it all!

I hate this cancer! I was sick during the night and depressed when I woke up. My body feels weak, I had this stomach ache and I feel sorry for myself. Sometimes, when unwanted moods take over, it seems best to let it all out so one day IT IS ALL OUT. Then, there is no repair - the moods just lift - eventually. I think I still stand in a place where I will feel better. BETTER - is still reachable. I need to wait.

(2) 2nd and 3rd week in Mayo Study

Even though I think I should be having more problems with these chemo pills - I am not.  At least compared to the liquid chemo I received before surgery.  It seems that the total sick days have been minor.  Sometimes, I worry that I'm not feeling horrible and miserable.  It's almost too quiet.  I was expecting to be sick every day, unable to eat, being achy all over and staying in bed all the time.  That seems more like a true battle - more like a fight.  So I need to believe that it's okay to fight without major pains and serious side effects from the chemo pills.

I am more "daydreamy." I have occasional nausea, followed with sickness and I am more sleepy.  I say that's minor.  Just watching the morning news is a realization that people suffer much more than me right now.  I am so thankful for this chemo treatment.  I am thankful for my family, friends, and those people I don't even know who send their good thoughts my way.  People can be so amazing.

(1) Conversations of Death

Rough night last night.  Nothing like waking up at 3am to go to the bathroom and end up spending the next 20 minutes getting sick!  Finally, things settled down and I was able to get back to sleep.  I hope this is not the start of something worse.  That's the thing with cancer, it makes you think differently about things.  Sometimes, it has a voice all it's own.  It makes me think of things I don't want to think about, or at least not at this point in my life.

Death conversations are hard.  Before my cancer, those type of conversations use to take place periodically between Janet and I.  You know, the "growing old together" type of conversations. Janet would guess that we have around 20-25 years ahead of us , but I would always disagree and say it would be more than that, possibly as many as 40!

In reality, about 2 years ago, I had this strange, vague feeling inside me that I only had about 5 years to live.  Angels didn't come to me in my sleep and tell me.  I didn't hear voices either.  It was just a feeling and it led me to an urgency to get some things done.  I didn't talk about this urgent feeling or thought.  It's not something you announce at dinner or at a family gathering. I do have to wonder if it was around this time (2 years ago) that my cancer began.

The first thing I thought of when I had this sense of urgency was the need to organize the photos I had packed away in my office.  Gathering photos of my past relatives and telling their stories seemed important to share with living relatives.  Devoting my time to photos and similarily, to geneaology, was easy to do.  Even if I didn't believe in that vague 5-year feeling, it was something I had always wanted to do, eventually.  With this feeling I decided I needed to get on it.

To my surprise, discovering that I have a non-curable, aggressive cancer brings with it no predictions of how long I will live.  I've never asked and I like it that way.  My goal is to reach those years where Janet and I are sitting on a front porch, rocking away.  The encouragement comes from the pills I am on. They have shown great promise of stopping growth or slowing down similar cancers.  I put great hope in these pills that I might go into remission.

(1) First week in Mayo study

I've been on the new chemo pills for about 6 days now and I keep waiting for the drastic side effects, but I am thankful it has only been a couple of bouts with nausea and getting sick. I do fear that fatigue has set back in, as I do not feel the energy I had been feeling.

I feel strange things occasionally, but I don't know if it is related; like sometimes a burning sensation will occur around my stomach area. I hope the pills are doing the job of stopping the growth of my cancer. I don't know when I will get another CT scan to find out. I am guessing, probably in a month or two.

Bobbie Sue (my son's girlfriend), stopped over with some garden goodies last night. We appreciate her thoughtfulness and will have a treat for supper tonight.

Thank You For Your Love and Support

From the time I was diagnosed, I can't thank my family and friends enough for the love and support you've given me.   The words of encouragement and your visits have meant so much.

Those who have found a way to help take care of our dog, Jacy, during the past 6 months, there are no words to tell you how much we appreciate you!

It brightens my day to go to the mailbox and find a card with thoughtful messages of love and hope.

The flowers I received during my hospital stays were so beautiful and livened up the otherwise dreary rooms.

The care packages and treats from gardens are so special.  It reminds me of what people use to do for one another "back in the day."

I know I can't begin to list all the wonderful things people have done to show their love and support, but please know, I love all my family and friends, near and far.  You have played such an important part of my life and this difficult journey.

I can't thank you enough.

Accepted Into The Clinical Study at Mayo Clinic

I got the call from Mayo's Clinical Study Coordinator, Beth, yesterday.  It is official now - I passed all their tests and can start participating in their cancer study.

Today, Janet and I drove that familiar trip to Mayo, in Rochester, Minnesota. I had another ecg, a urine test and blood test before I could pick up the chemo pills called Pazopanib.  The dosage is 800 mg.  I will be taking 4 pills daily - after drinking plenty of water.  I've decided to take them before I go to bed so if I deal with any side effects, maybe I can sleep them off.

I feel fortunate to be in Mayo's study since these pills have stopped, or slowed down the growth of other cancers. They haven't been tried on my type of cancer (Sarcomatoid Renal Cell Carcinoma.)  Mayo is hoping to get 30 - 40 people in this study.  Another woman and a man are participating so far.  I am the 3rd chosen participant.  Beth doesn't know much about the other woman in the study but she told me that the man has had no side effects so far, except his hair has turned white in spots. THAT IS AMAZING and makes me feel hopeful that the side effects may not be that bad.

I guess that is my biggest fear right now, the side effects.  The pages they give you listing the potential side effects is enough to make me want to run the other way.  I really don't have much choice though and even side effects for common over-the-counter meds are scary.

I am grateful to be chosen for this trial.  It allows me to dream that my cancer is being zapped and I come out of the study cancer free.

Preliminary Testing at Mayo

I got the call from Dr. Shah saying they had received and reviewed the rest of my medical records. They determined that my cancer fits the criteria of what they are looking for in the clinical trial.  Now all I need to do is pass a series of test to see is I am medically stable to enter into the trial.  He said the coordinator of the trial would be calling me back to set up appointments for those tests.

Beth, the Clinical Coordinator of the study called me the following morning and we scheduled two separate days of appointments.

My tests were scheduled for July 31st and August 2nd.  Janet and I had figured a smoother and quicker way to get to Mayo.  The travel time was 2 hours and 15 minutes. (MUCH BETTER AND NO CAR SICKNESS)

The two days consisted of the following appointments: Oncology Evaluation (going over, discussing, and signing all the legal documents,)  Blood and Urine Tests, CT scan of my head, Electrocardiogram, Echnocardiogram, and a CT scan of Chest/Abdomen/Pelvis

These were the final steps in seeing whether or not I would be accepted into the study.  I was sitting on pins and needles.

Preliminary Evaluation at the Mayo Clinic

I got a call from the Mayo Clinic a few days after my last appt. with my oncologist.  They scheduled a preliminary evaluation for July 26th  with Dr. Brian Costello.  He is the primary oncologist overseeing the clinical study.

The Mayo Clinic Main Entrance

Janet and I had used the online Mapquest to determine the quickest route to Rochester, Minnesota. Even so, we left about an hour or so early just in case we ran into difficulties getting there or other unforeseen problems.  I am so glad we did because the way we took ended up taking us over 3 hours to get there.  Not only did it take that long but the road we traveled, once passing over the Mississippi River and through Wabasha, was unbelieveable.  It was up and down steep hills, with narrow winding roads.  Janet was in Heaven at first.  She kept comparing it to roads she had traveled in North Carolina, but when I started having nausea and car sickness, her favorable comments stopped! ;)

We arrived in time for my appointment.  Though nervous, it helped to be caught up in the impressive architecture, decor/art, and the size of Mayo.  I had to go through several checkin's before actually meeting with the oncologist.

Me, at The Mayo Clinic

Rochester, Minnesota

Before meeting Dr. Costello, we met with his associate, Dr. Mithun V. Shah.  He was very personable, polite, and spent a lot of time asking questions about my initial symptoms continuing all the way through my surgery.  He discussed the medical records he had rceived from my surgery but informed me that he had not gotten all of the records associated with my chemo treatments, nor all of the pathology reports. (This really upset me considering all the time I had spent on the phone making sure that all my records had been requested and received!)  He continued by giving me a physical exam and then left the room to get Dr. Costello.

Dr. Brian Costello

Dr. Costello was very formal when first entering the exam room, and gave us information concerning the clinical trial.  The trial is only for those patients having other than clear cell carcinoma.  He said if I was accepted, I would be recieving Pazopanib, a pill form of chemo.  It has been used on other cancers, having positive results in slowing down the growth of the cancer and in some cases, stopping the growth all together.  He made it clear that it has never been used in a study for the Metastatic Sarcomatoid Renal Cell Carcinoma, so they do not know what effect, if any, it will have on me.  He asked many questions pertaining to my overall physical and emotional well being.

After all the formal questions and answers, Dr. Costello became very personable sharing that he too was from Wisconsin.  We talked about Wisconsinite topics and I began feeling more relaxed with him.

As our appointment ended, he explained that he would have to wait for the rest of my medical reports to come in before he knew if I could be considered for the trial.  If I did, he would have me come back for 2 days of imaging and serum studies.  The results of those tests would determine if I would be included into the trial.

It was a LONG day and we left feeling weary. Once again I will have to wait to find out if, when, and what the next step would be.

Looking For The Next Step

After my release from St. Joseph's, I spent about 2 weeks recovering from surgery at home before my first follow-up appointment.  It was with my oncologist, Dr. Delmastro, here in Eau Claire.  I had not seen him since before my surgery, and I was anxious to find out what the next step might be.

It felt so good to see his expression when he came into the room.  He had a huge smile on his face, clenched his fist in the air and exclaimed, "You made it!!"   I loved his enthusiasm and it made me feel like I had done something miraculous!  He kept saying how good I looked.

After the initial moments of "atta girl" we got down to business.  He went through all the findings from the surgery and explained that the cancer remaining showed primary cells of the Sarcomatoid variant. (The most aggressive of Renal Cell Carcinoma)  Since this type of cancer has little response to chemo, or even radiation, he felt like my best hope would be to enter into a clinical trial.

He actually began searching on his lap top for a possible trial as we sat in the examination room.  At first, he could not see anything within driving distance, so he began looking in the Baltimore, Maryland region.  He knew that Janet was from that region and we had both lived there for several years.  There was nothing that dealt with my type of RCC.  As he searched, many trials were over seas: China, Germany, France.  He finally ran across a trial that had just opened up at the Mayo Clinic, in Rochester, Minnesota.  BINGO! (2 1/2 hours away)

He said he would first have to contact the head oncologist overseeing the trial to see if I would possibly qualify and I would also have to be 100% healed from the surgery.

Janet and I left the appointment with great hope.  Dr. Delmastro said he would either call me, or have the oncologist from Mayo call within a week.

In the meantime, we traveled back to Marshfield on July 17th for a followup appointment with my surgeon, Dr. Wernberg.  Her expression was similar to Dr. Delmastro's. She went out of her way to congratulate me on my speedy recovery.

It's funny, everyone was making such a deal about my recovery, yet I felt like it was taking forever!  I had no energy, little appetite, and everything seemed like a big deal to accomplish.  Even though Janet had kept telling me how great I was doing, I didn't feel like it.

It finally sunk in when Dr. Wernberg said, "Cindy, what you went through in that surgery was massive.
It's only been a little over 4 weeks.  Believe me when I say, you are recovering in lightning speed!"

I told her about the trial Dr. Delmastro was looking into and her response was positive.  She felt like within 2 weeks, I would be 100% capable of entering a trial.

It was shocking when she actually released me from her care that day.  I thought I would have at least a couple more visits with her to make sure I was completely healed.  I understood they were looking into further treatment for the existing cancer and I could not continue any treatment until I was released from her care.  I guess I was having a hard time accepting the fact that I needed to move onto the next step right away.

Surgical Outcome and Recovery

In all honesty, it was many days before I truly knew and understood the full outcome of my surgery. Even though Dr. Wernberg had been in the following day to explain everything, and Janet had told me things, I was so drugged up, I did not grasp what I had been told.

Once I finally began to heal and they decreased the amount of pain killers, I finally understood most of what had happen during the surgery.  In a nutshell, they could not remove all of the cancer.  They were able to remove the large mass, described in size as larger than a football.  However, there was more cancer within the chest wall that was inoperable and it was too dangerous to try and remove the part coming through my ribs. I also learned they had found the mass was not only attached to the kidney and liver, but also attached to a small area of my lower right lung.  This meant they had to remove that portion of the lung.  They also removed my gall bladder and 80% of my diaphram.  This was repaired by replacing the area with mesh.

Dr. Wernberg was genuinely upset they could not get all the cancer, but she said it would have been too dangerous for them to attempt anymore than they had.  She said she even called in a specialist during surgery to look at the ribs and chest wall area.  They said it was just too risky to continue.  One of her exact comments to me, which I will never forget is, "All and all, Cindy, the best way for me to describe it is: I decided I liked you more, than I hated your cancer."

It's hard for me to put into words how I felt when I truly realized they had not gotten everything.  I also learned that the biopsies taken of the remaining cancer cells during the surgery show further aggressive Sarcomatoid RCC.  I was so sore from the surgery, I tried to concentrate on my recovery and put all this and my feelings about it aside.

To me, my recovery felt like hell.  I thought I would never feel good again.  I had a chest tube, a catheter, two IV's, leg pressure cuffs, and oxygen.  There were more tube's attached to me than I could keep track of.  Everytime I moved, I hurt from the chest down and constantly had to know where those tubes were.

Janet was there night and day being my personal care taker and cheer leader.  She was wonderful!!  At times though, I was so annoyed when she pushed me to get up and walk, or do my beathing exercises. When I look back now, I know what she did must have helped in my recovery because I was released from the hospital after 8 days!

Me, the day before my discharge.

The Surgery

After checking into the Hope Lodge on June 11th, Janet, Debbie, and I got the suite set up.  Once we were settled in the room, things begin hitting me.  I started feeling somewhat anxious and needed to have sometime alone with Janet.  I knew she would bring me the comfort I needed.  We decided to take a short drive.

We had not gotten far until I asked Janet to park.  My mind was flooded with so much, all I could do was cry.  I mean, after all, I could die in a couple of days!  I kept thinking about Dr. Wernberg saying, "There is no guarantee, Cindy.  This is a MAJOR surgery and there is a fear that you could bleed out during it."  Not only that, I was scared to death if I did pull through the surgery, what kind of shape was I going to be in?  They told me they would do all they could to reconstruct my rib area along with the diaphram and chest wall, but I may have permanent disfigurement and limitations.

Of course there were no answers or comments Janet could make to take all those fears away, but what she did do and say gave me the comfort I was looking for.  She held me as I cried then said, "Cindy, I truly believe in my heart of hearts that you are not going to die in this surgery and no matter how you are after the operation, I will be there by your side, step by step, loving you as I always have.  WE WILL GET THROUGH THIS!"

These moments and words allowed me to pull myself together and I felt so much better.  Shortly thereafter, we left to go back to the room. Knowing the next day was going to be a long one, we said our goodnights to Debbie and headed to bed.

The next day was filled with pre-op test and appointments at the Marshfield Clinic and St. Joseph's Hospital. My first was scheduled for 7 am and they continued until 4 pm.

The most important appointment of the day was with my surgeon, Dr. Wernberg.  Again, she was very caring, thorough, professional, and left me feeling like I was in very competent hands.

Debbie and Janet was such a big part in helping to keep my nerves under control that day.  We had a lot of waiting time at each appointment and their natural sense of humor kept my mind occupied.  I can't imagine the day without them!

We finally returned to the Hope Lodge and met up with my sister, Carla.  I was so glad she came down the evening before my surgery.  The four of us hung out, and shared supper together.  It was a lot of fun and made the evening fly by.  Before I knew it, it was time to go to bed.  My surgery was scheduled for the following morning at 8:00 am and I had to check in by 5:30 am.

Saint Joseph's Hospital

Marshfield, WI

I was actually surprised that I slept as well as I did and happy for it.  The morning was a blur.  In some ways, having to check in so early was a good thing.  I didn't have time for the nerves to get the best of me

Once at the hospital, I did not have a long wait before they called me to go into pre-surgery.  They assured me as soon as they could, they would allow Janet to come back and spend time with me before surgery.  (They said that would be in about an hour or so.)

While I was in pre surgery, the rest of my family and friends began arriving.  From my understanding, they pretty much took up a large section of the waiting area.  This consisted of my son and his girlfriend, my brother, 2 of my niece's, my great neice, 2 great friends, and a cousin.  Adding Debbie, Carla and Janet meant there were 11 in total there for my benefit.  It felt so good knowing they were all there.

Unfortunately, there were issues getting the epidoral in place for my surgery.  Things took A LOT longer then they had anticpated.  By the time they finished prepaing everything, there were only 10 minutes left before I was to go into surgery.  I was getting a little worried about what Janet would do if she wasn't allowed to come in, so we could see each other. 

Even though they had given me some wonderful drugs, I can still see and remember the angst I saw on Janet's face by the time they let her and my son in to see me. I knew there must have been a bare spot in the waiting room carpet from her pacing back and forth.  Though it was short, I needed those moments with them.  It meant everything to me!

The surgery was 6 hours long.  I came out at 2 pm and I was in recovery another 2 1/2 hours.  The first thing I remember, once in my room, is Janet calling my name and asking for a wink.  Moments later I remember my room being filled with all those who had come that day.  I really don't remember too much more until late that night. 

Janet stayed on a cot in the room with me.  I remember waking and feeling like someone had ran over me with a semi-truck.  I knew I was on a self morphine pump, but I couldn't find the hand control to push the button for another dose.  I called out to Janet, and she got up & found it hanging off the side of the bed.  After giving me a dose, she tied the pump to the bed rail and put the control in my fist.  I was out within minutes.  Sweet relief!

(4) Pre Surgery: Debbie comes from Maryland

Through it all, Janet has been so strong.   (At least she is in front of me.)  As the day of my surgery got closer, I began seeing the worry on her face and could feel the stress building within her.  She was doing her best to hide it, but I knew.

I was so relieved the day she came into the den and said she had just talked with her sister, Debbie. She was grinning from ear to ear when she told me that Debbie was flying in from Maryland to be with us for my surgery.  Even though Janet is close with members of my family, I know there is nothing like having a sibling stand by your side.

Not only was Debbie flying in 2 days early so she could go with us to the pre-op appointments in Marshfield, she was going to come back to our house after the surgery and stay with our dog, Jacy, until I was released from the hospital.  I couldn't believe that she was going to do all of this for us!

Debbie, Janet's sister

On the afternoon of June 10th, we picked Debbie up from the Chippewa Valley Airport.   It was so good to see her!  I had time that afternoon and evening to visit with her like she was just here on vacation.  It was just like Debbie, to come bearing gifts.  She brought me a beautiful pajama set to wear during my hospital stay.  They were so pretty and COMFORTABLE!

After spending the following day getting all the last minute details taken care of, going to the grocery store and other errands, we packed the Blazer and headed to the Hope Lodge, in Marshfield, WI.

(3) Pre Surgery: The Family Cookout

As soon as we got word of the surgery date, Janet wanted to have a cookout for the entire family. At first, I couldn't believe she was even suggesting a cookout!  I was stressed and felt like there was just too much to do in getting prepared for the surgery.

She explained that she had already talked with our niece, Monica and we could have the cookout there. As always, Janet had a sparkle in her eye when she said we had a large pork shoulder in the freezer just waiting to be smoked.  She said she would go over the day before to get things ready, and smoke the pork.  Her famous potato salad and baked beans were also on the menu.  They would ask the rest of the family to bring a covered dish.

The more I thought about it, the more I knew it would be a fun day and rid me of some of the stress I was feeling.  So, on June 8th, the weekend before my surgery, the whole family came together for a great time!  Thanks to everyone who came and made the day so special for me!!!

Below are some pictures taken on that day, unfortunately, I got caught up in the fun and didn't get shots of everyone there.

Me, holding my great niece, Kendra

Janet's Smoked Pork

My partner, Janet, grillin' burgers and dogs.

My niece, Monica and my great nephew, Cameron
with great niece, Kendra

Lawn Dart Competition

My niece, Erica

My niece, Jenny, holding great niece, Kendra

My son, Travis and his girlfriend, Bobbie Sue

Erik, my nephew, up to no good!

My dear friend, Shelly

My nephew, Paul and my son, Travis (black shirt)
showing off their Lawn Dart expertise

My brother, Lowell, the Lawn Dart Champion!

"Didn't you bring home any leftover's?"

Jacy

Again, I apologize for not capturing everyone with my camera that day.  I did not get pictures of  my niece Melanie and her family, Kyle and Austin- my great nephew Issac- nephew Josh and his two sons, Colton, and Mason, Carla, my sister -  AND THE WONDERFUL FOOD!

There were other's taking pictures that day.  If you have any shots of those I named above, PLEASE CALL ME!

(1) Pre-Surgery: My Surgeon

It felt like forever for me to get the call from St. Joseph's, but my cell phone finally rang and I was told the surgery was scheduled for June 13, 2013.  I immediately felt like I had SO MUCH to do before the surgery.  The first thing they scheduled, was a meeting with the primary surgeon and the urologist.

Janet and I traveled to Saint Joseph's, in Marshfield, WI, to meet them on June 3rd.  Although we had researched Dr. Jessica Wernberg's professional profile online and liked what we saw, we were both a little apprehensive when learning the limited number of years she had been practicing as a surgeon.

Dr. Jessica Wernberg-Surgeon

We were both nervous going into the meeting with Dr. Wernberg, but she made all the difference in making a horrible situation seem more manageable.  It was not easy listening to her talk about my surgery, especially when she got into the specifics.   Due to the mass being attached to several organs, she said they would be removing my entire right kidney, part of my liver, part of my diaphram, areas of my chest wall, and possibly 2 ribs. 

I was not expecting the comment about removing my ribs.  I knew a part of the mass was coming between two of my ribs, but none of my doctors in Eau Claire had talked about their removal.  I have to say that I'm not sure I heard some of her following comments because all I could think about was losing ribs and what that would be like.

The next thing I heard her say was they would be consulting with a plastic surgeon to assist with reconstructing the areas of my ribs, chest wall and diaphram. She continued by saying they may have to do other removal or repairs depending on what was found during the surgery.

When I gathered myself together, I ask her exactly how dangerous the operation would be.  She said, 

"There is no guarantee, Cindy.  This is a MAJOR surgery and it is possible you could bleed out during it.  Of course, we will do everything within our power to see that it does not happen."

As overwhelming as it all was, Dr. Wernberg had a natural gift of making you feel a sense of security with her.  She delivered what she had to say with great professionalism and the perfect amount of a friendly personality with bedside manner.  She didn't candy coat the seriousness of the operation, but the meeting with her ended with confidence.

The operation would be performed with her leading a team of multiple doctors.  There would be 5 surgeons, along with many other specialists, including the plastic surgeon on standby.  In total, there would be over 20 members of medical staff in the operating room!  We left the meeting with Dr. Wernberg feeling scared but confident we had one of the BEST on our side!

Following our meeting with Dr. Wernberg, we met with one of the other primary surgeons, Urologist, Dr. J Vincent Thomalla.  He is the surgeon that removed my right kidney.  In essence, he repeated what we had heard from Dr. Wernberg.

At first, Dr. Thomalla seemed gruff and lacked showing any empathy, but as the appoinment continued, he "softened."  He began showing more of a caring personality and made me feel like he was truly on my side to give his full expertise for a successful outcome.

Dr. J Vincent Thomalla, Urologist-Surgeon

   

(2) Pre Surgery: The Hope Lodge-Marshfield, WI

The Hope Lodge

Marshfield, WI

On our same visit to Marshfield to meet with my surgeon, Janet and I went to the Hope Lodge to see what it was like.  The Hope Lodge is run by the American Cancer Society and only provides cancer patients and their caregiver accomodations while they are staying in Marshfield to receive treatment at local medical facilities.

We were told about "The Lodge" by my oncologist, Dr. Delmastro.   Once the date of my surgery had been scheduled, he filled out all the necessary paperwork for me to stay there during my pre-op appointments and Janet to stay there the entire 11 days. (Throughout my pre-op, surgery, and release from the hospital)

We rang the bell of the Hope Lodge doors and a smiling woman greeted us.  I told her we would be staying there in about a week or so, and ask if we could take a tour.  She was more than gracious and spent a lot of time taking us around the facility and explaining how it was run.

As soon as we walked into the first main room, I could tell they wanted you to have as close to a home-like feel as possible.  Their was a huge "livingroom" area with beautiful decor, stone fireplace, large couches and chairs with a big screened TV.  A room connected to the livingroom was a library filled with books, puzzles, and movies.   She explained that any of these can be used in the library or taken to your room.

Around the corner was an area with two computers for residents use and further down the hallway was a common area that had coffee, bottled water, juices, fruits, pastries and other snacks.  A few steps took us into a huge, open kitchen and dining room area.  Actually, there was a total of 4 kitchens within this room.  Each resident is assigned a kitchen.  This kitchen gives you a place to keep food within a frigerator/freezer, use of stove, microwave, and everything you would need to make and serve a four-course meal!!!  You are also given an locked cabinet to keep any dry goods you may want to store. They even had two "common refrigerators/freezers" that residents can freely take any food or condiment they want from them.

The upper floors were set up much like large hotel suites.  The suite we saw had wonderful furniture and looked very comfotable.  It had a coat closet, and a built-in desk as you enter the room.  The livingroom area had a pretty pullout sofa, with matching lounge chair and a TV.  The bathroom was exceptionally large with plently of shelving to store personal toiletries.  The bedroom was large with a queen size bed, side tables, dresser and closet.  Anyone would be more than comfortable in these suites!

On the lower level of the lodge were rooms with specific purposes.  A meditation room, an exercise room, a room with toys and play areas for visiting children, a room for classes and meetings, and even a day room where someone who is not a quest could take a nap.  Also downstairs was a laundry facility where residents can wash and dry their clothes.  They were equipped with detergents, dryer sheets, and even an ironing board and iron.

Janet and I were both blown away by how clean, modern, and wonderful this place was.  We could not have felt more thankful knowing we were going to have such wonderful, worry-free, accomodations while going through such a scary time of my journey.

Chemo Treatments

After being discharged from Sacred Heart Hospital on March 18, 2013, I was set up to receive weekly chemo treatments at their Regional Cancer Center.  Most of my doctor appointments consisted of lab work and chemo throughout April and May.

Sacred Heart Regional Cancer Center

Eau Claire, WI

The actual chemo used was called Temsirolimus.  Luckily, the side effects weren't nearly as horrific as I have heard about.  I did not lose my hair, and I didn't spend a lot of my time in the bathroom getting sick.  I guess the first thing I experienced was fatique.  There were days that all I wanted to do was sleep.  Some of the other side effects were loss of appetite, change in the taste of food, and occasional car sickness.

I went to chemo for about 7 weeks when they decided to do another CT scan.  Though my oncologist was hoping for a 15% shrinkage in the size of the mass, it had only shrunk approx. 5-7%.  I can't say that we weren't disappointed with the result, but it was better than no shrinkage at all!

Dr. Delmastro contacted the surgeon and it was decided due to the seriousness of the operation, it was better to try and continue to shrink the mass with continued chemo treatments.  So, the operation was put off, and I continued chemo treatment for another 6 wks.

I had another CT scan done on May 29th  that showed little to no shrinkage of the mass.  Dr. Delmastro and Dr. Wernberg decided to waste no time in scheduling my surgery.  I had to wait at least 2 weeks because the chemo had to be completely out of my body.

Now I had to wait for the call from Saint Joseph's Hospital in Marshfield, WI, letting me know when I would have my surgery!

My Diagnosis:Renal Cell Carcinoma

I began having back pain in February of 2013.  At first, it was just a discomfort I felt more at night.  Having been involved in a serious sledding accident back when I was in my twenties, I was use to having back issues periodically.  Usually a few days of using an ice pack, massages using Pain Buster, and limiting my physical activity took care of the problem in a week, or so.  This time however, the pain continued.  I went to a local clinic and the doctor there referred me to a physical therapist.  I had several “adjustments” with no result. The pain continued to increase to the point, I couldn’t lay on my back.

On March 7th, after having a terrible night of pain, my partner, Janet and I decided to go to the emergency room of Sacred Heart Hospital.  After first being checked out by the triage nurse, they felt like it could be my gall bladder and ordered a sonogram.  This pre diagnosis was not too alarming because we had gone through gall bladder problems with Janet years ago.  She had to have her’s removed and she was fine within 3 days of her operation.

We were not prepared for the ER doctor to come in  and report they had seen a large mass, in the kidney area, on the sonogram and needed to order a CT scan.  As we waited for them to take me for the scan, I kept hearing those two words, “LARGE MASS,” repeating over and over in my ears.  How could this be?   

They ordered the CT scan and gave me a good amount of pain killers.  I must admit, the next several days are somewhat of a blur to me.  So, instead of me detailing the ten days I spent in Scared Heart Hospital I will give you an overall outcome.

After my CT scan, I was told that the mass had grown out of my right kidney and had attached its self to part of my liver and diaphram, laying against my lung.  A portion was attached and growing through two of my ribs.  They said in all liklihood it was cancer. 

Yes, I remember once in awhile feeling a sore area outside my rib cage, but really?  Kidney Cancer?  I had no blood in my urine. I had no fevers.  I had no symptoms to warn me of something so devasting. This was too unreal.

After the CT scan, I was introduced to my wonderful oncologist, Dr. Dean Delmastro who strangely made me feel calm as he explained all the bad news.  He ordered a biopsy confirming a rare form of Stage 4, Renal Cell Carcinoma. 

Dr. Dean Delmastro

In spite of the diagnosis, my time spent in the hospital is best described as foggy, dull, and me being in cheery denial.  I just kept repeating, "Everything is going to be okay." And, "I believe they will just remove the mass." Every person who came to see me had worried, skeptical and reserved emotions on their faces. I tried to make them feel better, meanwhile I didn't know, yet, that I needed to feel better.

According to Wikipedia on the internet:

"Renal cell carcinoma (RCC, also known as hypernephroma) is a kidney cancer that originates in the lining of the proximal convoluted tubule, the very small tubes in the kidney that transport GF (glomerular filtrate) from the glomerulus to the descending limb of the nephron. RCC is the most common type of kidney cancer in adults, responsible for approximately 80% of cases.^[1] It has been described as being among the most lethal of all the urological cancers.Where the tumor is confined to the renal parenchyma, the 5-year survival rate is 60-70%, but this is lowered considerably where metastases have spread. It is relatively resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy. Targeted cancer therapies such as sunitinib, temsirolimus, bevacizumab, interferon-alpha, and sorafenib have improved the outlook for RCC."


As it states: "80% of the people who get kidney cancer have RCC (Renal Cell Carcinoma). Unfortunately, as time and further biopsy's have gone by, I now know that I have 2 rare variants of RCC: Sarcomatoid and Chromophobe. So I am not in the common 80 % of people who get RCC, in fact, I have not one, but two, rare variants of RCC. As rare, as rare gets.

There was still hope at this time in the hospital though, as there was a vague plan that a surgeon might be able to remove all of the mass.This would not erase all of my problems, because they said the likelihood of it growing in other areas was highly probable.  At least if they were able to remove the large mas, it would buy time to search for other treatments.

Much of the next eight days was spent on pain management and determining if the mass could be removed surgically.  Dr. Delmastro located a surgeon at Saint Joseph's hospital in Marshfield, Wisconsin.  Her name is Dr. Jessica Wernberg.  After viewing the scans, she agreed to perform the surgery but recommended trying chemo treatments first in an attempt to shrink the large mass.

I had my first chemo treatment on March 16th and was released from Sacred Heart Hospital on March 18th.