Normalcy

The most normal I have felt since November 18th: today.  Today I felt like my typical Jenny self.  I played with my kiddo, drank some coffee, cleaned, cleaned and cleaned, watched some football, rocked and sang my angel to sleep, and sat down with a glass of wine in a nice (mostly) clean house.

To anyone else, this may not be the perfect day, but since spending the last 8 weeks out of any form of routine, normalcy is wonderful.

During my recovery, I was in significant pain.  I was on several alternating medications to control the pain as well as dealing with side effects such as fatigue and bloating.  Finally, I have nearly weened off all narcotic pain medication.  I can mostly control pains with ibuprofen.  I have been experiencing a lot of back aches, but massage and heat usually help.

I slept all the time.  Between the medications and the overall just feeling crappiness, I was in bed a lot.  I'd have good days where I was up and active, but the following day I would crash.  Day to day, I am getting more and more energy, hence my productive day today.

The worst feeling of the whole recovery was my inability to fully care for Arya the way I usually do. It was heart-breaking every time she would put her arms in the air for me to pick her up for Mommy to hold her, and I couldn't.  Now, with my lifting restriction gone, she is getting back to being Mommy's girl again, wanting to cuddle even more than before the surgery.

Our family had a very chaotic Christmas; however, we were all together and that is what mattered most of all.  Arya had a ton of fun opening gifts and playing with her cousins.  She received a lot of great gifts.  She is blessed to have so many people in her life.  This child is very loved.  

January 6th was our follow-up appointment day at Mayo clinic.  I had blood work and a CT scan in the morning and appointments with the surgical physician's assistant and oncology physician's assistant.  

The surgical PA reviewed my blood work results first.  My liver function is fully back to normal following the resection.  The CT revealed nearly full regrowth of the liver at this time with no evidence of disease within the tissue.  The spinal lesions are still present; however, they are stable.  Meaning, they have not changed in size since August of 2013.  In Jenny style, I did ask her whether or not I was able to drink again.  She said yes, but she did caution me as all doctor's caution their patients in regard to alcohol use.  She cleared me for lifting and full activity as well as discharged me from their surgical service.

We spoke with the oncology PA at length regarding the test results as well as the next steps.  As of right now, there is no "known" disease in my body.  The spinal lesions are a concern, but since they have not changed in nearly a year and a half, the physicians are not convinced that they are a severe threat.  We decided collectively as a group to meet with a radiation oncologist at our next appointment.  We may proceed with radiating at that time.  We also spoke with her about possible preventative options, but at this point there isn't enough research supporting what was proposed with Dr. Banck.  

The news we received was better than we could have ever imagined.  I remember the day we were told that this outcome was out of our realm of possibility.  I remember when all we all had to hold onto was hope, but with excellent care, a positive attitude, the support of others and the power of prayer, I can finally see a light at the end of a very long tunnel.

Thank you all for your love and support.  I am going to hopefully have another "normal" day tomorrow.  I hope you all do to.

Love Jenny

Thanksgiving to be thankful for...

I started my month of thankfulness on Facebook, but decided to finish it up here.  This is what I had written for the month of November.

Nov 1-On my first day of thankfulness, I am using mine from day 1 last year: Arya. I know I couldn't have been so strong this year without her. She's everything to me.

Nov 2-Thankful for our beautiful home. Halloween marked one year in our forever home.

Nov 3-For my 3rd day of thankfulness, it's this guy and the life we have built together. Our relationship has had to endure more than many, but through everything he's my rock.

Nov 4-I am thankful for my buddy Corbin and my little Leighton. If I could love anyone as much as my own, it's these two. They are pure happiness.

Nov 5-On my 5th day of thankfulness-I am thankful for my sisters who are also my best friends.

Nov 6-Today I am thankful for my parents, Ron and Lelony Olson. I appreciate them always being there for us and all that they do and have done for us. As a child, I was lucky to live near my grandparents. I am so thankful that Arya will know that same lifestyle.

Nov 7-I am thankful for Tim's parents Tom and Deb Ekvall. They are always there for us and have helped us in any way the can throughout our whole relationship. I couldn't have asked for better in-laws.

Nov 8-Today I am thankful for modern medicine. I've needed it.

Nov 9-Thankful for coffee. Enough said.

Nov 10-I am thankful for my very supportive, very large extended family including but not limited to Grandma, aunts, uncles, and cousins upon cousins upon cousins (both mine and Tim's). I've been blessed to know the true meaning of family.

Nov 11-Today I am thankful for all the men and women who have fought or continue to fight for our freedom.

Nov 12-I'm thankful for my friends. Old, new, near and far. I have been blessed with many who are as close as family.

Nov 13-I am thankful for the communities I have lived in: Fort Ransom and it's people for the great upbringing and the abundance of support, Kansas City for the memories and the opportunities that it afforded me, Grand Forks for my education and good times.

Nov 14- I am thankful for our comfortable life. We may not have everything, but to me we have it all. We have a nice, warm home, plenty to eat, love of family and friends-a safe place to be. Some people in this world, country, state or even county cannot say the same thing.

Nov 15-Today I am thankful for birthdays. Something to think about... as we age we complain about getting older; however, what's the alternative? Be grateful for every year we have.

Nov 16-Today I am thankful for all the thoughts, prayers, kind words and happy thoughts I have received from friends and family since all our troubles started, but especially now. This is going to be a rough week for my family and I, and we continue to be thankful every day for all our outside support.

Nov 17-Thankful for Mayo Clinic for all the answers I have received and the care that I have been given.

Nov 18-Thankful for Dr. Farnell and his very capable surgical team.

Nov 19-Thankful for pain medications.

Nov 20-Thankful for caring, compassionate, knowledgeable nursing staff.

Nov 21-Thankful for finally being in a private hospital room.

Nov 22-Thankful that my sisters and Jer brought Arya to me this weekend.

Nov 23-Thankful to be headed home.

Nov 24-Today I am thankful that the surgery was a success.  Despite my long road to recovery, I have a lot to look forward to down the road.

Nov 25-Today I am thankful for the help and support in my recovery I have received from my family, but most of all Tim.  Without being able to hold or lift Arya, I’m limited in what I can do to care for her.  With limited mobility and significant pain, I am also limited on what I can do for myself.  But he has been there.

Nov 26-Today  I am thankful for nap time… both mine and Arya’s 
Nov 27-Today, this Thanksgiving day, I am thankful for time spent with family...and time out of my house.
Nov 28-I am thankful that I am NOT shopping.
Nov 29-I am thankful that I am able to be home with my Arya angel every day.  She's my world.
Nov 30-I am thankful for a life filled with love from my husband, child, family and friends.  I have been blessed with so many special people.

Now for my medical report:

Mom, Dad, Tim and I went to Rochester on Monday, November 17 in preparation for my surgery.  I had a few steps I needed to complete before checkin on the 18th.

November 18th, I was admitted to St. Mary's Hospital at 5:30am for surgery and inpatient stay.  Tim and my parents were able to be in the prep room with me until they wheeled me to surgery. Apparently they have 60 operating rooms and 4 more under construction!  I was wheeled into surgery at 7:30.  I am not completely sure as to when the surgery was over, but after, Dr. Farnell met with Tim and my parents and stated that the procedure went very well with no unexpected outcomes.  Also, it appeared that the majority of lesions removed had already been killed by the chemo.  I was in recovery a little longer than expected.  I learned last surgery that Diuladid, a common pain medication used for surgeries, made me intolerably itchy, so they counteracted it with Benedryl...in turn I had trouble waking up due to the Benedryl.  I was taken to a regular surgical floor after coming to.  I had requested a private room, but unfortunately got a double.  However, I didn't have a roommate initially.

My pain was well controlled and I was resting well, so neither Tim nor my parents needed to spend the night.  Within two days, I had been up walking, showered with assistance, advanced to a soft diet and they found me a private room.  Alayna, Jer, Stacey and the kids all arrived on Thursday evening, so Friday morning, I was so excited to see my little angel Arya!  She would sit with me a little, but mostly she was on the move.  Healing was progressing well, my mobility was getting better, and I was tolerating food, so Sunday the 23rd, I was released.  The road home was very bumpy, but I was just happy to be headed back home.

I have been home recovering ever since then.  I initially was on high doses of "good" pain medication, but I have now slowly weaned off the prescriptions.  Now, I am alternaing Tylenol and Ibuprofen.  Initially getting comfortable was hard due to the incision, but as it heals it is more and more durable.  My incision has healed, but it will take time to completely heal the tissues underneath. Portions are still numb because of severed nerves.  I have started moisturizing and massaging for scar tissue management.  We received the pathology report in the mail a few days ago, and the results were promising.  The right lobe was completely removed, but in it they found 7 lesions.  Of the 7, 4 had been already killed by the chemo and the remaining 3 were still viable.  Removal of the whole lobe however has taken care of that.  In the left lobe, the wedged resected (removed) 2 remaining lesions, both in which were already dead from the chemo.  No other lesions were found in the remaining left lobe.  As it regenerates, we will monitor any new lesions that may arise in that left lobe.  The next step will be to look at the lesions on my spine to see if we need to radiate or if the chemo has killed them.  I have a follow-up with my Fargo oncologist Dr. Gitau to simply review results and check on my recovery process.  I will go back to Mayo in early January for complete surgical follow-up.

We have had so much support in both taking care of me and Arya.  Tim's parents are here until after the holidays.  Between them, my parents, my sisters and friends, Tim has been able to go back to work without leaving me alone with Arya.  She doesn't quite understand why I can't pick her up, and I will admit that when it comes to her, I haven't been spectacular at abiding by my weight restriction. But overall, I've been pretty good.

As for home life, I was on the ball and put up almost all my Christmas decor before surgery.  I have been wrapping presents as I buy them, and I am almost completely done shopping.  I have been able to help Mom with her decor, and I have all my Christmas cards out.  As Christmas is my favorite time of year, I have done many of the things I always would.  I'm excited for another holiday with little Pea, and she's old enough this year that it should be a lot of fun.

Thank you everyone for all your thoughts and prayers during this time and throughout this latest recovery.  I am doing well, and I have kept my spirits high.  I am looking forward to the next step and await the day when I can finally take a deep breath of relief.
Love to all-Jenny

Twas the day before surgery...

This may be the most candid I have been thus far, but here it goes...

Right now, Tim and I are sitting in our hotel room in Rochester, MN across from Saint Mary's Hospital where tomorrow I will go for my much anticipated surgery.  Mom and Dad will be here soon.  As much as I want to say (and believe) I am ready,  I have a "zillion" things running through my head.

I keep telling myself over and over that I have been through this type of surgery before, and I can handle it.  But having been through it before, I can quite frankly say "it sucks".  This time they will be removing the entire right lobe of my liver and a portion of the left as well as my gall bladder.  I am beginning to wonder what I will have left down there.  However, I have done it before and can again.

The hardest thing right now was not only leaving Arya behind, but knowing the fact that I will not be able to hold/carry my baby for at least but not limited to 6 weeks following the surgery.  I know she is in completely capable hands of people who love her very much, but to me, it's not the same.  I'm Mom and that's not replaced.  For the past couple days, all I've wanted to do is hold her, but now she's mobile and would much rather be running around than being cuddled by Mom for hours on end.    Fortunately, she will be coming down here to Rochester in a few days with Alayna, Jer, Stacey and the kids, so if I'm feeling up to it, I'll see her then.  

Of course there are fears that everyone has with a surgery like this: will there be complications? will they find something unexpected? etc.  I'm trying to stay positive as usual, but sometimes, truthfully it is really hard.

My big sister's words keep running through my head right now: "This is your chance to get rid of this now".  I'll keep holding onto that.  If all goes well with surgery, we will discuss radiating my spinal lesions.  If all tests are clear after that, maybe just maybe, I can say "remission."

I've received a lot of personal messages, texts, posts and well wishes in the past few days.  I apologize for not taking the time to respond individually, but I want each of you to know that I appreciate it all.  As for the blog, Tim will be updating you all with posts periodically as he is able in the days to follow.  Thanks again with much love.

Until next time...Jenny

Taking the next step...Surgery

Since my last post in July, life has been good.  I continued on with my chemo medications and prepared myself mentally for my October appointment.

August was pretty uneventful which is wonderful in my eyes.  In September, Tim, Arya and I made a trip to Kansas City to attend our good friends Dave and Tessa's wedding.  It was a wonderful weekend in that we were able to see so many of the friends we left behind and were able to be a part of our friends' perfect day.  Later in September, Tim and I took our "anniversary" trip back to KC to see my beloved Patriots get stomped on by Tim's Chiefs on Monday Night Football.  Despite the outcome of the game, it was a great trip once again in that we spent time with great friends and met new friends in the process.  Last week, my best girl Merri came in from Arizona to spend time with our family.  It was awesome catching up with someone who has known my heart for so many years.

As for this appointment, it was eventful.  For the first time since the Mayo trips started, we left Arya home as it would be less work for us and more fun for her if she stayed home with her aunt, uncle and cousins.  Thank you Alayna and Jer for taking my "Little Pea."  We arrived Tuesday the 21st, and I immediately went for my blood draw.  After we met up with our good friends Laura and Andrew who were also at the clinic for Laura's appointments.  She is in a battle of her own, fighting a rare genetic cancer that first attacks the thyroid.  Like me, she's been going through this with a small child involved.  As I had my MRI, our friends, my parents and Tim waited.  After the MRI, we went with our friends to have dinner and drinks.  While out, we won $900 in pulltabs!  It was a fun relaxing evening before a stressful day of appointments.

Wednesday, Mom, Dad, Tim and I met with Dr. Banck to review test results and go over options again.  My bloodwork, once again was completely normal with nothing indicating decreased liver function.  As for my MRI, the lesions observed in my liver have not shrunk this time; however, they have not grown and no new lesions have appeared.  This is considered stabalized.  As for the pancreatic nodule, it still is no longer visible.  One of the two lesions on my spine has continued to shrink.  I made it a point to stress to Dr. Banck that this time I was completely ready to pursue surgery.  Although she stated the benefits and risks of surgery either way, she seemed glad that I was ready to pursue the next step.  Also, she strongly emphasized the need to stop the chemo at this point. I have completed 19-3 week rounds of high-dose oral chemo since August, so she feels that my body needs a reprieve.  We also further discussed pursuing radiation to the spinal lesions after surgery recovery and a trial of sandostatin injections to "hopefully" keep microscopic lesions from growing.

Next we met with the surgical team assigned to my case.  I had previously only spoken the surgical lead, Dr. Farnell, but this time I also met his associate Dr. Tee.  She first examined me and reviewed my test results.  She was amazing!  She explained the entire procedure in a way that we could all relate to, and she did so very confidently.  She stated that they do these procedures all the time with a very high success rate.  Dr. Farnell then examined me, further explaining the cut techniques and exploratory techniques once inside.  What it boils down to is that he will remove the right lobe of my liver as that side continues to show 5 present lesions.  Removal of the whole lobe will also take care of microscopic lesions that are not visible on MRI.  As for my left lobe, Dr. Farnell will wedge out a lesion near the surface if able and use radiofrequency ablation on any small lesions found during exploration.  Essentially that is a cool term meaning they will "cook/burn" the lesions out.  They will have to balance the whole procedure so they don't take too much liver that I lose substantial liver function.  He stated standard surgical risks as well as 7-10 day recovery period in the hospital. After that time, I will be released to home.  I will have several restrictions, including a 10 pound lifting restriction for at least 6 weeks.  During that time, my left lobe will grow in size and should be back to the size of a normal liver within 8 weeks.  They will periodically monitor liver growth through outpatient CT scans.  After surgery and the radiation portions are met, hopefully we can consider this remission for now.  Surgery is scheduled for Tuesday, November 18th.

The type of cancer this is has high potential to return whether it be months or years, so we will do ongoing monitoring and treatment as needed when that time comes.  As for now, my family and I are at peace with the plan and taking this next step forward.  I am so happy to be off the medications, as the wear on my body has become more and more noticeable as the drugs accumulate.

The best part of the whole trip was coming home.  I missed my angel so much, and thank God every single day for bringing her to me.  I am going to take the next month to prepare for the holidays, wrap up projects, love on my kiddo, etc.  Thank you for keeping myself and my family in your thoughts and prayers.  We get through each and every day by just living.  Nobody is promised tomorrow let alone next week or 20 years.  Hold those you love dear, pray for those less fortunate and be grateful for every day.

One fine July day...

It has been a beautiful day here in Rochester, MN with mild temps and a sunny sky.  But that's just the weather; it's been a good day on all fronts.  I had an abdomen/pelvic MRI at 7am and a chest CT scan at 8:30 to start my day.  Then I slept.  The end of chemo cycle is when I experience the most fatigue, so after finishing my round on Monday and our constant busy schedule the last week, I needed to just crash.  Luckily, Tim, Mom and Kathy were more than willing to take care of Arya.

We met with Dr. Banck around 4:30pm today, and the first thing she said was "the lesions are continuing to shrink".  As has been the pattern with each visit, the lesions in my liver continue to shrink by approximately 33% with each 3 month interval between scans.  The spinal lesions are still present, but again, they are smaller.  At the last appointment, the scan only pictured one lesion, but this scan still shows two only smaller than previously shown.  The nodule on/near my pancreas was not seen today on imaging.  They referred to it as "unidentifiable".  My chest CT was clear.  The pulmonary nodule they had previously see was just that, a nodule of no significance.

As for where we go from here, Dr. Banck is largely letting me set the course.  She leans toward going through with surgery; however, she is open to continuing the medications or seeking a radioablation treatment method.  Downfalls of staying on the meds are long-term effects caused by exposure to chemo medications and eventual ineffectiveness of medications when used long-term.  As for the spinal lesions, we may seek radiation therapy to my lumbar spine at L2 and L3.  Radiation is more effective when treating solid bone.

Per my wishes, we decided to continue the medications until October at which time we will meet with Dr. Banck and the surgeon to reassess for surgery.  We will also have this time to explore all of our treatment options more thoroughly.  I am very open to doing surgery, but I would like to hold off until the colder months and make sure we are doing what is right for me medically and my family as a whole.

So yes, overall it was a beautiful day in Rochester.  After the appointment, we had our usual celebratory supper.  Each win deserves a celebration.  We will be coming home tomorrow to continue on as usual.  I will be busy prepping for my baby girl's first birthday bash.

Thank you all for the love and support.  It is overwhelming knowing how many people are in our corner.  I know in my heart that I am going to get better; there is no other option.
Love always-Jenny

Summer adventures and what is to come...

I should start off by saying that I am sitting with Tim in our hotel room in Rochester awaiting my blood draw appointment.  Arya is down the hall with my mom and our friend Kathy.  Tomorrow I will once again have imaging in the morning of my lungs and abdomen with a follow-up appointment with Dr. Banck scheduled at 3:45pm.  I know we will review all testing and again discuss the surgical vs. non-surgical options.  I'll write again tomorrow or Thursday to fill you all in on what we find out.

As for our little family, it has been a GREAT summer.  I knew I would love being a mommy, but the love and fulfillment I feel because of our angel has made every day better than the next.  It has been amazing watching her grow and learn new things.  Our "baby" will be turning one in less than two weeks, and I am excited and sad all at the same time.  Each phase has been amazing, but it's hard to think of her a toddler and no longer our little baby.

Like I said it has been a great summer filled with family.  We made a trip to Illinois to see Tim's family, attend his cousin's wedding and meet individuals who supported us at our Glasford, Illinois benefit.  It was wonderful.  Tim's parents bought a second home in Fort Ransom, so we spent several weeks with them working on the property.  We celebrated "being Kylstad" with over 100 of my closest Kylstad relatives at a reunion held on the family farm.  It was great having Tim meet family members he hadn't had opportunity to meet, and hang out with family members that also supported us in benefit efforts.  The fourth of July in Fort was once again a fun-filled weekend, including a parade, picnic, games, rodeo and my favorite, a trip to Storybook Land in Aberdeen, SD with my parents, sisters and the kiddos.  Tim, Arya and I went to wedding last weekend for a wonderful young woman I met while caring for her sister.  Her sister, a bridesmaid and one of the great joys I have had in my life, remembered me right away.  It was a wonderful feeling.

This weekend, our little family of 3, took advantage of HAVING to come to Rochester by stopping in Minneapolis for the night for a mini family vacay.  We spent 2 half days touring around the Mall of America.  Arya loved the aquarium, seeing the kids at Nickleodeon Land and riding the carousel with her daddy.

Like I said we are now in Rochester.  I will update you all on my status when we know something.  Thank you for continuing to keep myself and all of us in your prayers while we are on this journey.

Love Jenny

Keep on keeping on...

We have been to Rochester, and we are already back again.  The news was pretty good.  Monday the 7th, I had blood drawn and another MRI.  The following afternoon we met with Dr. Banck again as well as the surgeon Dr. Farnell.

As far as report goes, my blood work still looks great.  All liver enzymes, red, white counts are normal. The MRI continues to show shrinkage of the lesions.  There are approximately 5 visible lesions in my right liver lobe and 1 visible in the left lobe.  I specify visible because we cannot discount any microscopic lesion that may have shrunk down that we can no longer see via imaging.  Doctors Banck and Farnell posed the option for surgery.  At this time, the plan would be considered "debulking" the disease.  What that would entail is resecting the entire right lobe of my liver.  That would take away all disease in that lobe.  The lesion in my left lobe would be wedged out as well.  The liver is regenerative to some extent, so though the right lobe would be gone, the left lobe would double in size eventually. However, we cannot discount any lesions that may still be present in the left that are too microscopic to see at this time.  Also, the nodule near my pancreas is still shrinking, but may not be operable due to its positioning.  One of the lumbar lesions that was previously ill-defined and non-enhancing is no longer visible on the MRI.  The other remains, but it is still non-enhancing and ill-defined.

The surgical option was a lot to take in.  I asked Dr. Banck if continuing the medication regimen for another 3 months would be an option and see what the options would be at that time.  She states that there really is no set treatment plan for this type of cancer, so she feels that continuing meds is certainly a viable option as my body seems to tolerate the regimen so well.  She appears confident that whichever path we decided, we would continue to be moving in the right direction.

I have decided to keep going with the medications at this time, and we will readdress surgery in 3 months.  I know that ultimately we will be resorting to surgery, but I would like to give the meds a little more time to keep working.  I would also like to hold off on surgery until Arya is at least a year old. We are all happy and comfortable with the decision.

So life goes on as usual in the Ekvall household.  Arya is wonderful and keeps amazing me everyday. Tim's job is going great and has been more than accommodating with our revolving appointment schedule.  I take every day as it comes with my family.