Lessons To Share

This last year I have learned, learned and learned some more. I have learned an overwhelming amount of medical terms, become an (at best) amateur caregiver, was forced to face a challenging, shitty life change and made a big life change by choice as well. Last year I was faced with my most challenging crisis to date. My mom was diagnosed with pancreatic cancer on December 14, 2015. She’s been through a complex surgery and grueling recovery, six months of chemo and six weeks of radiation. People told us that it was going to be a roller coaster. If this figurative roller coaster had a name, I would call it “To Hell and Back.”

There have been so many lessons learned in the last year it would take a few posts so I’ll highlight the ones that have stuck with me the most.

1. Don’t Assume Someone Isn’t Hurting, Sick, Sad…Just Because They Don’t “Look” It
Many people have this image of what someone with cancer looks like, but I can tell you that just because someone doesn’t look sick, doesn’t mean they aren’t. I have a lot of hopes. One of those hopes is that we remain mindful that everyone is fighting a battle of some sort. If you can’t find it in you to be kind, civility would be greatly appreciated. Here’s a picture of my mom in her last month of chemotherapy. Isn’t she beautiful?

cropped-img_20160726_193039.jpg

2. Your Mom Earned That “Protection” Badge, Damn It!
Even when you’re a grown adult, Moms will always want to protect you especially when they aren’t feeling well. Moms don’t even care about how crappy they feel, all they can seem to do is worry about their kids and feel like they are inconveniencing everyone around them. You will want to remind her that you’re an adult and she can talk to you about her concerns, her fears and very private things like whether or not she has eaten enough, what she had to eat and when, has she had a bowel movement, how much she weighs but when she doesn’t want to, don’t push it!

“Protector” is a title our moms earned and we shouldn’t take that away from them during rough times. Moms devoted oodles of time and energy making sure we looked both ways before crossing the street, protecting us from germs, feeding us, clothing us. Moms want to be the ones that are always there for us…they want to be our pillars, not the other way around. And just because we (children) don’t always agree with that way of thinking, we should respect it. When our mothers aren’t feeling their best for whatever reason, it’s important for them to feel strong and I believe they feel strong when they are protecting us from hurting emotionally. I bet my mom is laughing so hard reading this wondering when I’m going to start taking my own advice! Ha!

3. There Will Be Days You Won’t Be Your Best You No Matter How Hard You Try
And that’s okay, but don’t be a jerk because you’re not the only one dealing with crap! There are quite a few people who will give you the benefit of the doubt a time or two but not much beyond that. During my review with my sales manager this last year, she took that opportunity to address the struggle I was having with compartmentalizing. I was so grateful she brought that to my attention. I now know that is something I need to improve on so I try to be cognizant of this daily. On the days you’re not your best you, own up to it.

There will be days you don’t know who the hell you are anymore. You’ll wonder if “not knowing who you are anymore” is another one of these “new normals” you have to start adjusting to. The original me did resurface, but not without a few scratches, dents and flat tires along the way. This is resilience. I learned about this last semester. Sometimes it takes people longer than others to bounce back, and sadly, some never do.

4. Dealing With Crises Is Not “One Size Fits All.”
An expert shared with me that when most people are faced with a tragedy, they often become an exaggerated version of themselves. A negative person typically becomes more negative. Sometimes optimistic people will be so optimistic they end up in denial to the point where they won’t entertain important options. Everyone handles crises differently and that’s why a lot of times there is conflict during crises. I recently came across some incredible advice for everyday life but is also very useful when having a different perspective from someone else…

“Try to see where the other person is coming from, not where YOU WISH they were coming from.”

5. People Will Surprise You
People you expected would always be there for you don’t always show up when the going gets tough. People will distance themselves or completely vanish from your life. This goes along with the previous lesson that people handle crises differently. Just remember that is about them and how they have learned to cope. It’s not about you. But guess what?

6. AGAIN, People Will Surprise You!
In a good way! There will be people who make up for the ones who vanish and sometimes it’s people you never would have expected offering sincere, much-needed support. Often times you won’t want to accept it because you don’t want to feel like a burden. Well, let me tell you something! There really are a lot of terrific people in this world with lots of love in their hearts who want to do good and feel their purpose is to lend a hand, an ear or a shoulder to cry on. Let them. It’s truly a win-win.

7. Eliminate and/or Learn To Deal With Toxic People STAT!
There are toxic people you can rid of by cutting ties. Unfortunately some toxic people are people in our family or people we work with. If there are toxic people in your life that you haven’t set boundaries with, start working toward setting those boundaries now. Don’t wait. Toxic people are the last people you need to worry about during a crisis because even (and sadly sometimes especially) during a crisis it will be about them. Setting boundaries is an acquired skill. It can be uncomfortable at first but setting healthy boundaries is something I started working on a few years ago and I’m so glad I did. I can’t imagine what this last year would have been like for me mentally if I hadn’t learned to develop this skill.

8. Self-Care Is A MUST
If you don’t take care of yourself first it will make it very difficult to help care for another human being. This could be its own separate post so I’ll mention a couple ways I practice self-care.

– Take time for yourself even if there is only a small window of opportunity.
– I joined a cancer support group for a short time and it was very beneficial for me to spend time with people who could empathize with what I was going through.
– Don’t ignore your emotions.
– Ask for help.

Most importantly remember…

9. Cancer Patients Are Silent Soldiers.
People fighting cancer are fighting a battle that so many of us can’t possibly understand unless we’ve walked in their shoes. We can’t fight this battle for our loved ones (it took me a long time to finally accept that), but we can fight it WITH them. I received the best piece of advice from one of my mentors when I told her how helpless I felt. She shared the most valuable advice I have ever received…”Just be with your mom. Laugh with her. Call her. Text her. Hug her. Make sure she never feels alone because there’s nothing worse than feeling alone.”

I’ll leave you with the words I try to live by every day…
Be GRATEFUL for each day.
Be HOPEFUL for many more.
BELIEVE there’s a reason and
Have FAITH that God will help you through it.

 

Advertisements

My First Love

I read somewhere that the depth of your grief is equal to the depth of your love. The writer was conveying that the more you love someone, the stronger the emotional pain will be when they are hurt, sick or gone. This concept makes sense to me but it makes me incredibly uneasy because I’m a “lover.” I love life and the reason I love life is because I love the people in mine so much. Why would that make me uneasy? What could possibly be wrong with feeling so much joy? Well, if the depth of my grief is truly equal to the depth of my love, and I love the people closest to me completely and whole-heartedly, what will that do to my spirit when the unthinkable happens? On December 14th, 2015, the unthinkable happened. My world became darker than it ever had been before. My mom, the first person I ever loved and have loved the longest in this life, was diagnosed with a life-threatening disease.

MY MOM
My mom is the strongest person I know. I have never seen courage and/or faith like her’s. She has handled this last year and all the torture that comes with it with such grace. My mom’s a fighter. My mom’s my hero.

THE CALL I’LL NEVER FORGET
“It’s bad.” Those were the only words my dad could muster when he called me at 10:00 pm that Monday night. He was scared, shocked and heartbroken. I didn’t need to see him. I could hear it in his voice. A CT scan showed a mass on my mom’s pancreas. I didn’t understand how…why?!!! She went in because she had a stomach ache. After I hung up the phone, my husband hugged me and I lost complete control of my emotions. A heart-wrenching cry escaped my body. The news was inconceivable. Surreal. I honestly paused several times to make sure that what was happening was real. I’m not one of those people who thinks situations like this won’t happen to me, but it doesn’t matter because you CANNOT prepare yourself for shocking, unexpected news like this.

REWIND
About 14 years ago, my mom had thought something was terribly wrong. It took many months for the doctors to figure it out but they discovered she would need her gall bladder removed. Fast forward seven years later to my mom in the fetal position on her bathroom floor with excruciating pain. This was another time she thought something was seriously wrong. It took a few weeks to discover a gall stone that ended up lodged in her bile duct. They removed it lapr0scopically. Fast forward to a week after Thanksgiving 2015. My mom first thought she had the flu but when the nausea and stomach pain persisted, she thought maybe it was an ulcer OR another gall stone that had been missed. When the pain and nausea became too much to bear she finally made an appointment with her primary care physician NEVER expecting this diagnosis.

I will be forever grateful for Dr. Jonathon Peters, my mom’s primary care physician. My mom typically saw a different doctor but he was out that day so they had her see Dr. Peters. He was very thorough and he acted quickly. I have since heard so many stories where primary care physicians send their patients away with a couple prescriptions and without doing labs. He was determined to find my mom the right surgeon and had an appointment set up with specialists by the next day. Dr. Peters is a wonderful person and if there was any doctor who had to deliver news like this to my loved one, I’m glad it was him. He offered genuine comfort and support in a time of great distress.

I’m embarrassed to admit how little I knew about cancer. There are significant differences in the various types of cancers but there are also significant differences within each type of cancer. I didn’t realize there is still so much learn about pancreatic cancer. The first fact I learned that week is when there is a mass detected on a CT scan in this area that there is a 95% chance it’s pancreatic cancer. The risk factors for pancreatic cancer include: tobacco use, alcohol use, obesity, family history of pancreatic cancer. These didn’t match my mom. We were certain she had to be in the 5%.

EMERGENCY ROOM TRIP #1
I wish I could say that after being completely shell-shocked with that news that there weren’t anymore surprises. Not the case. My mom was scheduled to meet with the Pancreas & Biliary Multidisciplinary team at the University of Colorado Hospital in Aurora, Colorado the following Tuesday. All week my mom was full of anti-nausea and pain meds to control the pain and nausea so she was incredibly lethargic and slept A LOT. I knew she had to be incredibly sick when she was anxious to get off the phone and when we didn’t get at least five calls with her checking on us and telling us to “watch for deer” on our road trip home.

When I saw my mom the next morning I was in shock. We were all together just a few weeks before. How could she be so sick? Because of the severe nausea and pain, she had not been able to eat or drink much the last few weeks so she had lost at least 15 pounds. She was YELLOW. One of the symptoms is jaundice (for most people it’s the first symptom). With my mom, the jaundice came on fast. My husband and a close family friend insisted we not wait until Tuesday and take my mom to the emergency room in Denver right away so they could start the process sooner than Tuesday. The multidisciplinary coordinator, Cheryl (an angel sent from Heaven), had included her cell number in her email regarding my mom’s appointment for the following Tuesday so I contacted her thinking there was no way she would respond on the weekend but we had to at least try. Cheryl responded right away and said she would notify the hospital that we were on the way and make sure there was a room reserved for her when we arrived. She told me to try to keep her hydrated.

The four-hour car ride to Denver felt like an eternity. I held my mom’s limp, bony, yellow hand and watched her sleep. I tried to keep her as comfortable as I could. I kept thinking about the times I had been sick when I was little and how great my mom was at taking care of me. I wanted to be able to offer her that same kind of comfort.As I sat next to my mom I could not fathom how incredibly sick she became in such a short amount of time. We had celebrated Thanksgiving and our family Christmas only a few weeks before. She was smiling, laughing, cooking, playing with her grand baby. I was driving myself crazy ruminating over the last few months trying to think of signs that we missed. Another lesson I would learn about pancreatic cancer is that early cancer of the pancreas may cause no symptoms. When symptoms occur they are often vague at first and similar to a number of ailments.

SURGERY #1
They performed an ERCP (endoscopic retrograde cholangiopancreatography). The tumor was causing a blockage and bile was backing up into my mom’s liver. They inserted a stent so the bile could drain properly. They also took a sample of the tissue. The diagnosis was confirmed…adenocarcinoma of the pancreas. We were lucky though, they said. My mom’s tumor was resectable which means they could remove it with surgery. We were lucky because only 20% of patients with this diagnosis have the option of surgery to remove the tumor. Great, right? Yes, it truly was, BUT this surgery, known as the Whipple procedure, is one of the most complex surgeries to perform, has a very long recovery time and often results in complications.

MY HERO, DR. RICHARD SCHULICK
Dr. Richard Schulick, Chief of Surgery at UCH, was the surgeon who took on my mom’s case. I can’t tell you how many times we heard various hospital staff say, “If it was MY mom, he’s who I would want to perform THIS surgery.” I finally asked if they were paid to say that. I worked in advertising for over 10 years and THAT is a powerful statement. One you could easily use to take advantage of people…especially people in as vulnerable position as this. After doing my research I learned that Dr. Schulick is one of the most renowned pancreatic surgeons in the world and has incredible bedside manner. The Whipple procedure was scheduled for January 13th.

Dr. Schulick and his resident at the time, Amy, explained that in most cases chemotherapy and radiation are administered first but the multidisciplinary team of experts concurred that surgery followed by chemo and radiation was the best course of action for my mom. They explained that chemo and radiation were the “marathon” in our journey. The “Ironman” was the surgery so we needed to take three weeks to work on getting my mom as healthy as possible to prepare her for the surgery.

My mom felt relief almost immediately after the ERCP and she was back to the mom I remembered. Please understand, I was not upset at my mom for not being herself. I can’t imagine the amount of pain she had to be in for her to have to take so much pain medication. My mom has a freakishly high pain tolerance and rarely ever gets sick. There are some people in this world who are very moody and unpredictable from day-to-day. My mom is not one of those people. She is happy, smiley and laughing most of the time so to see her in the state she had been in was very peculiar.

EMERGENCY ROOM TRIP #2: THE STORM BEFORE THE STORM
Everything was going good until five days prior to surgery. She was again unable to eat or drink due to extreme pain and nausea and was running a high fever and shivering uncontrollably. A fever just days before a major operation can be problematic. Again, on a Saturday night, I contacted Cheryl from my mom’s multidisciplinary team. She responded right away and advised to take her to the local ER. They could not determine what was causing the fever.

We left Monday morning for Denver even though we weren’t sure they were going to be able to operate due to the high fever that we were controlling with Tylenol. At this point, she was EXTREMELY sick again. She kept telling me she was incredibly cold and wanted me to help her get warm so she didn’t have a shivering episode like two nights before. I had been pleading with my mom to eat just a little and drink as much as possible. I was waking her up every couple hours to make her drink Gatorade or Ensure. I shouldn’t say “make.” She rarely fulfilled my request because she JUST. COULDN’T. DO IT.

I woke my mom at midnight to give her meds and give her a drink. We sat up and talked for a while and without warning she became very confused, began making random comments and started slurring her words. I took her temperature and it was 103. She asked me where we were and why were there? My heart dropped. I broke out in a sweat. I told myself I had to keep my shit together for my mom’s sake. I didn’t want to alarm her. I had no idea what was happening. Had the cancer spread to her brain? Was she having a stroke? I woke my dad to get the car ready to head to the ER. I put her socks and shoes on while she sat there so lost and confused. My mom could barely walk and not because she wasn’t strong enough. It seemed she couldn’t remember how. My dad was already getting the car so I wrapped one of her arms around me and had her hold onto the wall with her other hand and we slowly made it to the elevator from our room at the end of the hallway.

EMERGENCY ROOM TRIP #3
They admitted her and started fluids. They did multiple tests to try to figure out what was causing the fever, the confusion and the slurring. They decided they wanted to start her on antibiotics. She could barely speak or keep her eyes open but she kept telling them not to give her antibiotics because her surgery was scheduled for Wednesday and she NEEDED to have the surgery. I stayed by her side, held her hand and asked her if she was okay…if there was anything I could do. She mumbled that she just “wanted it to be over,” while struggling to keep her eyes open. She said it a few times and it alarmed me. With the shape she was in I had no idea what she meant by that statement. I walked down the hall of the ER to try to find somewhere to go to be alone. I grabbed a cup to get water and dropped to me knees and sobbed. They didn’t know what was happening to my mom. Was she going to be okay? Was she dying? They couldn’t tell me anything. A nurse saw me and came over and gave me a hug. She grabbed my cup, filled it with water and asked if I was okay. Bless. Her. Heart.

At 1:00 am, I self-talked myself into not going into denial about what may be happening and made the decision to call my brother and my husband and tell them to come as soon as possible instead later the next day. I didn’t call my sister because she was flying the following day anyway and it wasn’t possible for her to arrive any sooner.

Until this diagnosis, I have spent very little time in hospitals. All the noisy machines can cause a lot anxiety for people who aren’t aware of what the different noises mean especially when a nurse rushes in right after an especially loud noise to attend to…whatever it is they’re attending to! I couldn’t take it. I walked out to the gentleman at the desk, and asked with my eyes filled with tears, what to do if I thought I was going to have a panic attack. He lead me to their break room, grabbed me a water and crackers. He talked with me to help me get my mind off things for awhile and told me stay there as long as I wanted and to come back if I needed anything else. I assume he could get away with this because it was 3:00 am? Bless. HIS. Heart.

By the middle of the next morning, the fluids had done wonders for my mom and she was feeling much better and was alert. She couldn’t recall much of the previous day or night. She doesn’t remember telling me she wanted it to be over but she said that she knows exactly what she meant. She DID want it to be over. She wanted the tumor OUT so this craziness would be over and she could get back to her regularly scheduled life! Doctors from different departments kept coming in throughout the day to ask lots of questions. They ruled out a stroke and couldn’t find anything in the scans that gave them reason not to move forward with the surgery. At 4:00 pm, they told her they wanted to move forward with the surgery if she did. There was no hesitation. She DID. She wanted the tumor OUT.

SURGERY #2: THE WHIPPLE (a.k.a. The “Iron Man”)
They came for my mom at 6:00 am the next morning to prep her for surgery. The Whipple procedure, also known as a pancreaticoduodenectomy, is a complicated and highly specialized operation that is used to remove the head of the pancreas, surrounding duodenum, end of the bile duct, sometimes part of the stomach and then they reconstruct the digestive system. I couldn’t believe I had got to the point that I was actually looking forward to my mom having the operation. After seeing my mom the way she was the last few days, I knew it was the ONLY hope for relieving her unimaginable pain.

We each had a quick moment before they administered the drugs to say whatever we wanted to say because after that we could sit with her for a little longer but she wouldn’t remember the conversation. After they gave her the drugs we held her hands. I said, “You’re a tough bird, Momma.” She said, “I gotta look out for my birds.” I said, “Yeah, cause we’re your chicks.” And she replied, “You’re my peeps!” That was awesome. Definitely a comment my mom would make even if she doesn’t remember saying it:)

The surgery took almost seven hours and was a success. Dr. Schulick accompanied us to a conference room to discuss details of the surgery. His energy was that of someone reporting a very big win. It’s no secret he is highly respected and it’s apparent to see why. It was the first of many hugs that Dr. Schulick received from me whether he liked it or not! After what I had heard and read, I was incredibly nervous about the shape my mom was going to be in. When we walked into her room in the ICU, she was awake and talking to us! I couldn’t believe it! They had her stand up the day after surgery. She was NOT thrilled about that but she did it. She was in the hospital for 10 days.She was NOT thrilled about that either.

Recovery was going fairly well until they took out the epidural on the fifth day. The nausea came on with a vengeance. Vomiting after you had part of your stomach removed is the absolute LAST thing you want to experience. Because of that, my poor mom couldn’t even THINK about trying to eat. Her keen sense of smell was making everything taste like the hospital smelled so we couldn’t get her to eat even when we brought food in that was prepared outside of the hospital. They weren’t going to let her leave until she did. By Day 8, I thought my mom was going to go postal. They switched her to a pill called Reglan. We believe it was that paired with the prayers on repeat that turned things around.

OUR NEW NORMAL: INSULIN AND ENZYMES
Pancreatic tissue produces insulin that is required for blood sugar control. When pancreatic tissue is removed the body releases less insulin and then there’s a risk of developing diabetes. The other issue after having part of your pancreas removed is that digestive enzymes may no longer be produced to help with the absorption of fat, carbohydrates, and protein. This requires the patient to take enzymes prior to every meal and snack to ensure the absorption of nutrients.There was a lot to learn before being discharged.

THE VIRGIN CAREGIVERS
I wanted my mom out of the hospital as bad as she wanted to be out but I didn’t know if my dad and I were comfortable yet with our duties as caregivers. There were a lot of medications to administer including insulin for the type 2 diabetes. I knew nothing about how to determine how much insulin to give her. I had heard them use the term “sliding scale,” but had no idea what that meant at the time. UCH is a teaching hospital so there aren’t set appointments. The residents make their daily rounds sometime between 5:00 am and 6:30 am and then the attending stops in sometime between 7:00 am and 9:00 am. Then there was the pain team, the diabetes team…and they stop in whenever they can so there’s usually no warning. It was just our luck…mom was alone when the diabetes team stopped in.

When they decided to discharge us on a Friday night, I told them I was not leaving until someone discussed how to manage the diabetes. I knew very little about diabetes but what I did know was that diabetes is serious and I wasn’t leaving without being educated on the matter. The nurse who was discharging us was incredible. I knew she was getting push back but she didn’t back down. The diabetes team said they had stopped in twice to go over everything with my mom. I was very disheartened that they would find it feasible to try to educate a patient on how to manage yet another new, serious diagnosis when she was in an immense amount of pain, on narcotics, and whose only focus at that time was not to vomit because she just had a good portion of her insides removed and reconstructed. And to top things off, the “Whipple diet” of mashed potatoes, rice and milkshakes COMPLETELY contradict a diabetic diet. The endocrinology department and dietitian were very apologetic. The dietitian ended up calling us while she was on vacation. I wanted them to understand that this particular situation didn’t require the typical approach and hope that they now set appointments with the patient and their caregiver(s) if they are required to take insulin.

CHEMOTHERAPY AND RADIATION (a.k.a. The “Marathon”)
There wasn’t much time to enjoy feeling much better before my mom had to start her “marathon.” On March 31, 2016, my mom started the first of eighteen chemotherapy infusions at the University of Colorado Hospital. Treatment one time per week for three weeks followed by one week off. Fortunately, she never once vomited and she didn’t lose all of her hair. She was treated for neutropenia. With neutropenia, the body has a low level of neutrophils. Neutrophils are a type of white blood cell that help the body fight infection.When someone is neutropenic, they are at a very high risk of infection so proper precautions must be taken to prevent the spread of germs. She was prescribed Neulasta which she had to inject 24-hours after chemotherapy. Neulasta helps prevent against risk of infection. Radiation therapy was scheduled a few weeks after she completed chemotherapy. Radiation was every weekday for 6 weeks. Radiation made her sore and incredibly tired. She completed radiation on November 16th. I’m happy to report my mom is doing very well. There’s been a few side effects from the radiation and she still has some bouts of fatigue but she is a trooper!

LESSONS TO SHARE
I decided to make this a separate post. You can find it here at Lessons To Share.

AWARENESS IS POWER
Early cancer of the pancreas may cause no symptoms. When symptoms occur they are often vague at first and similar to a number of ailments.

Please note all of these symptoms and risk factors (information and graphics from the Pancreatic Cancer Action Network). I urge that if you or someone you know is diagnosed with diabetes that came on suddenly or your doctor tells you that you’re “pre-diabetic” and you have no family history of diabetes, to bring it to your doctor’s attention and ask for further screening for pancreatic cancer.

CCM-NovemberAwareness_infographic_v7
pancreatic-cancer-symptoms


If you’re still with me and there’s nothing you can take away from our story thus far…please take this:

Every single human being has one thing in common. There’s not a single one of us who is promised tomorrow. Be GRATEFUL for each day. Be HOPEFUL for many more. BELIEVE there’s a reason and have FAITH that God will help you through it.