Too good to be true...the summer that has changed everything...again.

It has taken me a long time to wrap my head around our current situation, let alone put it into words, but I am ready now.  I just read my last post from April.  At that time we were filled with joy as I was in remission from this horrible disease.  Currently, I have just finished my third round of high dose, intravenous chemotherapy.  It has been a long time coming to this point, so it's easiest for me to start from the beginning.  I am somewhat fuzzy on specific dates, but will do my best keeping you on the timeline.

As I said, in April we were celebrating my newfound freedom from cancer.  At the very end of May, I went to Lisbon to meet with primary care physician, Dr. Fernandez because I was having increased backpain and suspected a UTI (sound familiar).  Dr. F, who has known me most of my life, told me that he could not rule out something more serious given my health history.  We did a non-contrast CT of my abdomen/pelvis in Lisbon, and the results were sent to Fargo for assessment.  I was told there was possible lymph node enlargement, but further assessment with contrast would be needed.  That test was completed in early June.  We were hit with a hard blow.

The CT revealed a small liver lesion and enlarged lymph nodes in the area of the liver.  Dr. Gitau assured me the cancer was "slow growing", and that he and Dr. Banck would discuss the next course of action.  I spoke with Dr. B on the phone, and she assured me that this wasn't something we needed to jump on immediately.  The day I found out the cancer had returned was the very day before I was honored as the Honorary Chairperson/Survivor of the Year at our local Relay for Life.  I kept the reoccurence quiet with the exception of my family.  I gave my speech and pushed through it as I usually try, with a smile.

A couple days later, I left on a previously planned 5 day trip to see my best friend Merri in Phoenix, with the approval of my doctors of course.  We had a great time working on her wedding plans and catching up.  I returned to ND to start additional testing the following week.  I had an octreoscan which revealed cancer uptake in a couple lymph nodes near my clavical bone, lymph nodes near my liver, and a small amount within my liver.  Because my lesions were thought to be "slow growing", my doctors agreed on Lanreotide injections.  Lanreotide is a shot given every 4 weeks to stop or slow the growth of neuro-endocrine tumors.  It was passed by the FDA in December 2014, and research was very promising. I had my first injection near the end of June.

Throughout the summer we tried to take all focus off my cancer.  I was reassured that this drug would help, but only time would tell its effects, so we had to let it run its course.  Our family spent a large portion of the summer at Jeremy and Alayna's place on Cormorant Lake, hanging out in the sun, riding the boat, fishing and making awesome summer memories with the kids.  The second weekend in July, Tim and I traveled to Las Vegas for Merri and Jo's wedding and had an awesome time with old friends.  I was honored to stand by her side on her big day.  I had my second Lanreotide injection in late July, and at that point my standard bloodwork looked good.

Progressively through the summer, my back started hurting more and more.  I became accustomed to sleeping on a heating pad.  I called Dr. G and asked for something for pain.  He put me on Ultram. Tim and I planned a family trip with Arya to Kansas City to see our friends over our five year anniversary weekend.  Prior to going, I called Dr. G for a change in pain meds because the Ultram wasn't cutting it.  He prescribed Vicodin, but he also wanted to do a spinal MRI to see what was causing the excessive pain.  Due to a scheduling conflict, I couldn't do the test until after we returned from KC.  We went to KC and had a great time with several friends and former coworkers, but my back was still an issue despite the Vicodin.  I became physically ill after eating at one of my favorite restaurants, so we hung pretty low key the remainder of the weekend.  The 9+ hour return drive did not help matters any.

I had the MRI right when I returned.  I asked to be called ASAP when the results were in.  Although the official radiology report was not completed, Dr. G called to give me an update from what he and the staff radiologist saw themselves on the images.  He told me that there were lesions on my lumbar spine as well as larger and more lesions in the liver again.  The number of affected lymph nodes also increased.  I felt as though he somewhat downplayed the severity of the situation.  I emailed his nurse and requested copies of all the testing reports.  After picking up yet another pain medication at the Roger Maris pharmacy, I was handed the stack of reports as I was leaving.  The report of the spinal MRI was far worse than I was initially lead to believe.  Lesions were shown on thoracic vertebrae T5, T6, T7, T9, T10, T11; lumbar vertebrae L1, L3, L4, L5; small lesions on sacral spine; lymph nodes within the retroperitoneal periportal area and supraclavicular area; and multiple liver lesions that had significantly grown.  My mom and Alayna were with me as I read these reports. I completely freaked out and called Dr. B immediately.  She was very caught aback by what I read her on the reports.  She realized NOT "slow growing" after all.  I was already scheduled to be at Mayo three days later.

My Mayo visit was a blur.  I was in so much pain by the time we got there that we contemplated using a wheelchair.  The first day there was a Monday.  I had bloodwork, CTs of neck, chest and abdomen/pelvis, and an MRI of my abdomen pelvis.  After all my tests, I met with Dr. B.  Test results were comparable to what was noted on the Sanford tests.  Dr. B was extremely concerned about my pain, so she prescribed the heavy hitting meds, Oxycontin and Oxycodone.  She also recommended spinal radiation ASAP to alleviate pain.  Due to obvious changes in the tumor proliferation, she scheduled a liver biopsy Wednesday morning.  After our consult with Dr. B, we saw my radiation oncologist Dr. Olivier and his associate.  He had reviewed all my testing and schueduled simulation and radiation the very next day.  He also discussed radiation options in the future depending on Dr. B's treatment recommendations.  He also explained that we could not fully radiate my spine at this time as chemo was likely needed, and the bone marrow could not be damaged.  Tuesday morning we had a radiation simulation, and Tuesday afternoon I had my treatment.  I was initially in increased pain following the session, but over time it subsided. Wednesday morning was my biopsy; that afternoon I had a follow-up with the radiology associate. He told us the Dr. O was already brainstorming for treatment options or techniques for when the time comes.  Right away Thursday morning, we were back in Dr. B's office.  Official pathology reports were not back, but preliminary findings definitely proved that we were no longer contending with "slow growing" but rather high grade tumors.  She ordered an aggresive three day regimen of high dose intravenous chemo which she wanted to start the following Wednesday.  It had been a long trip and a long ride home, but we were greeted in Fort Ransom in such a heartfelt way.  We crossed Main Street at 11:25pm, and a large crowd of our friends and family from the community had congregated into the street in front of the bar.  They just wanted us to know that they were all behind us.  It was very humbling.

The following week I insisted on going to the lake and spending my chemo time there.  I was wishfully thinking I wouldn't feel as crappy as I did.  The first round was 8 hours Wednesday, 4 hours Thursday, and 3 hours Friday.  My mom was with me for all these sessions.  It didn't really hit me hard until Friday afternoon.  I spent all Friday evening, Saturday, and into Sunday morning sleeping on the couch.  I had no appetite, no energy, no desire to get up.  Food tasted awful, and I had the horrible metalic taste in my mouth.  Thankfully Tim, Alayna and my Aunt Rita were all there to take care of the kiddos and myself when needed.  I thought I had mentally prepared myself for the first round, but there is really no way to be "ready" for chemo.

We left the lake Sunday afternoon, and we were greeted at home by Tim's mom Deb and his aunts Linda and Deanna.  His aunts planned to stay the month to help out with anything and everything, and Deb will be here for the longhaul.  Tim's dad Tom will join us later this month.  We are so fortunate that they have a home here now and can come and help when we need them.  Having Tim's family here was and has been a Godsend.

My mom had scheduled knee surgery earlier this summer.  When hearing my diagnosis, she wanted to cancel, but my family and I would not let her.  We all agreed how important it was for her to do it ASAP.  For awhile we were balancing care lists between our two homes, but she's been recovering so quickly that she is now getting around great.  We've really leaned on eachother the past couple months.  On top of my chemo regimen and mom's surgery, both Tim's family and mine have had family medical issues pop up that has added additional stress to the whole situation.

After the first round, it took me a solid week to bounce back.  Once I did I was back to doing a lot of things I normally do.  I scheduled family pictures which I wanted to have done before my hair was gone.  They turned out fabulous, and we had the shoot in the knick of time because that day my hair started falling out.

My Grandma Joyce was my chemo partner for Round 2.  She was with me for my 8 hour Wednesday session then we stayed at Rita's in preparation for Thursday's morning session.  Friday, Grandma and Aunt Shirley took me back to Fargo and home again.  I managed to bounce back more quickly after this round.

SVACA (Fort Ransom's giant arts and crafts festival) came and went.  Tim's aunts left shortly after. I've been missing them a lot as they were good company and such great help.  Merri came into town right before my third round started.  She flew in on a Monday, we did a lot of catching up, and then she came to chemo with me for my 8 hour session and 3 hour session Thursday.  It was awesome having her here.  Tim brought me to treatment Friday.  Again, I felt great until Friday evening.  This third round has been more difficult than the second.

Third round was last week.  This go around I have been very dizzy, my blood pressure is low due to dehydration, ringing in the ears and sound distortions.  Overall side effects have included hair loss, weight loss, minimal appetite, dry skin, hot flashes (which are awful I now know), tingling of hands and feet.  Most of my hair is gone, but I do still have minimal in a bob cut.  I have a wig that I have worn on special occasions, but I prefer to wear a hat.  Both are rather hot.

When feeling up to it, I have tried to participate in as many activities as I feel I can.  We've been to the zoo, shopping, playing with the kids, cleaning, dinners out, etc.  We have had the most amazing support system throughout this entire mess.  Family support has been great with my parents here, Deb here and Tom on the way, Tim's aunts, my sisters, and Grandma as well as extended family.  I don't know what we'd do without them.  This is precisely why we decided to move home.  Also the outpouring of support from our community, our friends, Tim's coworkers etc has been huge.  Nothing can compare.   I'd like to thank everyone who has shown their support through cards, calls, messages, freezer meals, offers for babysitting, cleaning and rides to treatment, etc.  Your generosity and complete sense of caring does not go unappreciated.

 I am scheduled for chemo again right before Halloween, which makes me kind of sad to miss out.  We return to Mayo November 16 and 17.  At that time we'll discuss next steps.  So far my bloodwork has been promising.  My counts have been great.  My kidney and liver function is still normal.  Liver tumor markers being tested are trending down, which could be an indicator that the tumors are shrinking or losing strength.

As for what you all my be wondering, how am I doing?  Well...I have been dealing with each day one at a time.  This is the first time in my life I have ever tried to keep weight on or even gain weight.  As always my Arya makes me happy every day, so I try focus positive energy on her.  I have Tim, my rock and as I said, a huge support system.  I definitely do have my down days, but they are getting better.  I have a lot of inner thoughts, but I am able to talk to someone about them.  I worry about everyone around me and how this affects each of them.  I know we are all hurting in our own way, but we all have been staying strong and having hope and faith in the future.  You have nothing if you don't have hope.  I'm sorry that it has taken me so long to tell this story.  The thought of writing it out and reliving it was intially scary, but as I've typed, this has definitely been therapeutic.  I am also sorry that this is so long.  Sometimes I ramble.  Anyone who knows me, also knows that my stories in general can get quite long ;)


Much Love-Jenny

A Healthy Spring...

Spring is here in North Dakota, and as usual, Mother Nature hasn't decided whether she's warm and fuzzy or a cold b****.  Some things never change, so you just take what you get.  I guess that would be a good metaphor for many aspects of life.  

Enough with that though.  Aside from some ridiculously chilly days, it has been a good Spring for the Ekvalls.  Since I last wrote, there has really been nothing of circumstance to write about.  That feels so good to say!  I have fully recovered from the surgery I had five months ago.  Tim went on a guys' snowmobiling trip with a group of friends.  My mom, sisters and I had our ladies weekend in Minneapolis complete with Adam Levine at a Maroon 5 concert.  We've had some visitors from Illinois, and we had a wonderful Easter with family.  

One of the most notable things that happened was that I was asked to be this year's honorary chairperson for Ransom County's Relay for Life.  I'll be this year's survivor representative, presenting my story at the annual event Friday, June 5 from 11am to 11pm.  I'm honored for this opportunity to represent other survivors and also those who we've lost.  It's a great family event, so if you can, please join us.

This week Tim and I made our every three month pilgramage to the land of Mayo for follow-up testing and appointments.  I had blood testing and CT scans of my chest, abdomen and pelvis.  We met with Dr. Banck who was enthusatic in telling us that the scans showed no evidence of disease in the liver or other organs.  The liver has fully regenerated to full size.  As for the L2 lesion, there was little noted on the report, but Dr. Banck deferred those questions to the radiation oncologist we were to see the following day.  We talked about continued follow-up scheduling, and she stated that she would feel comfortable waiting 6 months to see me again.  However, she fully understood my need to keep close tabs on any changes at least for the foreseeable future.  We will be seeing her again in July or August.

One day after our appointment with Dr. Banck, we met with Dr. Olivier and Dr. Ahmed (resident). These doctors are radiation oncologists.  With them, we discussed options for following and/or treating the spinal lesion at L2.  When comparing CT imaging from August 2013 and April 2015, the lesion appears unchanged in size, but it is not noted as a tumor, but as sclerotic changes.  It is unclear whether this lesion is active or has been effectively killed through the chemo regimen I had.  As it has not changed in size and causes no pain, asymptomatic if you will, it is considered stable and reasonable to believe it is dead.  We went over options for continued monitoring or undergoing localized radiation treatment to "zap" whatever disease may still linger.  We chose to defer treatment again and continue monitoring.  We will meet with Dr. Olivier with Dr. Banck this summer and discuss the options again.

Tim, my family and I feel that we are in a very good place right now.  It has been nearly two years since we received the diagnosis of metastasis, and we are a far cry from where we thought we would be at this point.  My doctors honestly marveled at how well I have done and how well my body has responded to fighting this disease.  It once was that I thought about my illness all the time, but that is no longer the case.  It's a good feeling.

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