saraandthebee

[saraandthebee]

My Fiancée’s Birthday! We have a couple of weeks off from his treatments so this week is full of celebration!

[saraandthebee]

Today is What Matters

Today is what matters.

Right now, Ian and I are comfortably chatting about nothing in particular; me writing my blog post and him playing a video game and it feels so good.

For weeks, our days are filled with a mix of optimism sprinkled with a mix of worry and fear of the unknown. It’s exhausting for both of us; him being the patient and me the caretaker. We find small pleasures in spending most of our time together and sharing laughter and good memories. But that isn’t always the case.

Ian was discharged finally on the 15th of June and unfortunately because of excruciating pain, he was admitted back to the hospital on the 21st. We were sad because we had to go back but we charged on. At one point the pain got so bad that Ian was on three painkillers at once. The oncologist and several other doctors made a decision to do his 1st real round of chemotherapy treatment early. We were hopeful that the chemo would wipe out a good deal of pain but it made it worse. On top of Ian being really sick, he was put on nothing but liquids for almost two weeks and lost almost 60 pounds since June 1st when we first admitted him. It was tough on both of us!

Then someone must of heard our plea for any kind of help because things began to change. The pain started to subside and slowly but surely the doctors advanced his diet till he could eat solid food again. The nausea even went away. The only pain he had was when standing up and he even said it was around a level 1 or 2. I was so grateful that things were looking up. We even got a few days of meds paid for by the hospital. Thank our lucky stars!

He was finally discharged on the 18th so he could be at home for few days before he had to start his 2nd chemotherapy. When we got home, we thought we could just relax and be ‘normal’ for a few days. We were anything but normal but it was kind of comical. It felt weird to be home and everything that could go wrong did! The weekend was lovely though. On Saturday, I took Ian to Red Robin for a delicious burger. It was nice to laugh and have a nice chat over delicious burgers and fries. And who knew Red Robin has gluten free fries and gluten free hamburger buns! Thanks Red Robin! Sunday we were able to meet up with our good friends Adam and Kelly for breakfast and had a nice visit with them. Even though we had a mountain of things to do, we took the morning and afternoon off to catch up on rest.

Today is the third day day of his 2nd round of chemotherapy and the week has started off pretty well. Ian occasionally gets heavy nausea but that is to be expected. Every day he looks a lot better and I am forever grateful for how hard he has fought through this crazy journey. He is back to eating solid foods as well and celebrated with a gluten free pizza on Monday! We have visited with a lot of the friends we have made around the hospital including several chaplains, nurses, and doctors that have become our friends. I believe our luck is on the upswing!

I want to end with a few things that have helped us in the long run get through this trying time.

1) Live in the present and try not to think to far into the future. Take one day at a time.

2) Laughter is always good medicine

3) Keep your friends and loved ones close

4) If a decision doesn’t feel comfortable, don’t be persuaded to do it

5) Find something fun to do. My friend hooked up an X-Box for Ian and it helps when he needs time away from the hospital.

6) Document everything. We have kept a large notebook and documented every treatment, medication, and procedure Ian has received. This keeps us organized when doctors or nurses have questions later.

7) Don’t be afraid to ask questions

8) Reach out to cancer and health organizations for help. Since Ian has Non-Hodgkin’s Burkitts Lymphoma, I reached out to the Leukemia & Lymphoma Society, American Cancer Society, and the Live Strong Organization. The Live Strong Organization actually helped my fiance with calling the Medicaid office and giving them documentation that Burkitts Lymphoma is actually considered a disability.

9) Nutrition for any cancer patients is vital! There have been times that Ian has not wanted to eat because of lack of taste or nausea but he eats anyways to keep his health up.

10) Crying is good medicine. So many people told me if I needed to cry, to do it away from Ian so that he can remain strong. My advice is if you are a patient, find someone that can be there for you when times get tough and you need a good cry. I have been lucky to be here when Ian needs me and I need him and I am forever grateful for that!.

11) Remain positive. This one is tough and takes a lot of work but once Ian was given a really high prognosis for his cancer, we hit the ground running on his treatment. We talk about our fears and take one day at a time. Its not always easy but we try and see all moments as a way forward.

Thank you for following us on our journey. We are forever grateful for everyone in our lives right now and we are humbled by all the support and love we have received.

Till next time on Sara & the Bee!

XOXO

-Sara & Ian

[saraandthebee]

Ian vs. The Fastest Growing Tumor

My boo, my fiancée, my love, you are my hero!

Today has been a mixed bag of emotions and for good reason. Ian, my fiancée has currently been in the hospital for 22 days (almost the whole month of June) and is in his 29th hour straight of intense chemotherapy. This is his 2nd chemotherapy treatment in three weeks. I am listening to him breath softly, finally getting some good rest he needs. I can’t help but feel so close and yet so distant from him, even though he is two feet away from me.

What I thought was a journey for me in the beginning of the year quickly became a a rough path for both of us. Not many know, but since the end of last year, I started to experience this crazy pain in my legs. It was as if someone was squeezing them and holding me tightly at the waist. I tried everything from hot soaks in the tub to wearing dresses so that my pants wouldn’t rub the sore areas. The busier my job got, the worse the pain would get from sitting at my desk. In the beginning of the year, my feet would swell to two times their size and I had a hard time walking and even fitting into shoes. At first I ignored the pain because I have been able to weather pain before. Then after a while, it became so troublesome and it was hard to get through my work every day without complaint. At first, I hid it from my fiancee but after a while, I would come home in tears because the pain was so intense. My fiancee helped me cope by setting up foot baths or rubbing my feet, but nothing seemed to help. Everything seemed helpless. I decided to get it checked out and come to find out, I have sciatica from too much weight and an early back injury pressing on my sciatic nerve. I didn’t know weather to be mad or happy at the news. I was mad because I have always been somewhat heavy and have never taken my health serious enough to change it. Happy because I knew what I needed to do.

But I never got there. I let stress get the best of me just like I have all those years I kept telling myself, “this is my year to get healthy!”

February 14th, 2017 was a day of celebration. Ian and I are those sappy couples that take that day very seriously. Its not about the gifts but a celebration of what we have built together. To celebrate our lives and what we mean to each other. I didn’t really have to much time to think about it but Ian made surprise reservations at my favorite restaurant, Leopold's Kafe in Georgetown, Washington DC. It was a lovely night with dinner and conversation. Afterwards we decided to go home and gorge on Valentines Day chocolates. That night into the next day, he was feeling feverish and said that his stomach hurt him really bad. Who knew that was the start of a very scary journey.

Immediately we though it was something he ate. You see, he can’t have gluten due to his autoimmune disease, Celiacs. We checked the food recipes at Leopold's, checked the ingredients of the chocolates, and several other things we ate that day. Nothing seemed obvious, but we both agreed to be more careful. Over the next couple of weeks, the pain would come and go. We finally cut more things out of our diet including our beloved Chipotle and the occasional trip to McDonald's for their yummy hash browns. Then suddenly he didn’t complain about the pain and he looked like he was getting better. I selfishly didn’t ask if he was still in pain and focused on getting myself healthy. To this day, I am still kicking myself because I knew better!

Things got better for me. I cut out a lot of sugar and complex carbs from my diet, I sought the help of nutrition blogs and things seemed to be improving with stress. Things were pretty stable for about three weeks until I saw Ian rub his belly one night. I knew that he still had pain. He reluctantly told me that night that he didn’t want me to worry and that's why he never told me. The pain never went away, he just tried to weather it. My spidy senses were telling me, “take him to the hospital!!” I asked him what he wanted to do and he said no because he had no insurance.

Every article I read about his symptoms pointed to Celiac attacks. I just figured it was something we were eating. I tore our house apart looking for the magical culprit of his pain. Most days he was ok, and then he would have a day where he just couldn’t stand it. He would drag a blanket to our living room and just fall asleep for the day. I read a blog that said a vegetable cleanse is a great way to neutralize your Celiac symptoms. Reboot your system. I made hardy soups, and stir-fry's to try and cure him. But it wasn’t enough. I couldn’t breathe.

It was too much to handle some days. I came home defeated from work because I felt like nothing was working. I started to binge on the occasional unhealthy snack and soon I was eating badly all day long. It helped to cope watching my loved one suffer so much with a cheeseburger and fries. It was all I could do to get through the day at work as well. I felt lost, I felt stuck, and worst of all, I felt hopeless. I made a tough decision to leave my job after 5 years. I needed to step back and get some clarity. I have been running most of my life with very little downtime. I am always constantly worried about my career (where its going), not having enough money, what people think of me, not being where I want to be in life, what people say behind my back, and it all just got to be too much. I needed to heal and so did Ian.

The first few days were glorious. No where to be. No one to worry about. But a few weeks into my health sabbatical, Ian started to get more intense pain. This was the first time I started to get really worried about what if it’s not Celiacs. May 29th of this year was pretty normal. I ran Ian to the metro so he could get to work. After the trip to work, his pain intensified so bad I had to run into town to pick him up. That whole week Ian slept and tried to remain still to help the pain. June 1st, 2017 is a day I will never forget. I woke pretty early that morning to get a head start on the day. I had a full day of applying to jobs and watching tutorial videos. I made a smoothie for myself and thought I would offer Ian one. When I checked on him, he was curled in the fetal position grabbing his stomach. He tried to walk to the living room but didn’t make it too far without doubling over. This time he whaled from the pain. I knew he was in trouble. In flutter of activity, I quickly dressed and walked Ian slowly to our car. First stop was an emergency primary care that was recommended to us for people without insurance. The receptionist took one look at him and said, “No honey, he needs urgent care!” I quickly dragged him back out into the car and went to the closest urgent care, where they exclaimed, “Nope, don’t bring him in here, he needs to go to the ER!” Frustrated, I yelled, “Fine, where is one?” Thankfully INOVA Alexandria hospital was not far. I grabbed Ian’s arm, telling him to hang on. They were hospital I could trust.

What happened next, I don’t think anyone could of prepared for. Ian was hastily put into an ER room. In the first 30 minutes of him being admitted, he had multiple X-Rays, an EKG, a CT scan, and pain meds. When they wheeled him back from his CT scan, he was able to put his head back on the gurney and just rest. I felt uneasy there. I watched Ian’s heart monitor creep across the screen. I watched his IV drip slowly. I watched the flurry of nurses attending other patients. In that moment, It all felt so lonely and I quickly grabbed for Ian’s hand. The ER doctor came into his makeshift room very quickly exclaiming that he had bad news. My heart sank. What could it be? He exclaimed that they found a tumor in the small intestine, colon area. 10cm’s big! It was as if everything after that moment was in slow motion. Neither Ian nor I could comprehend the words that just came out of this doctors mouth. Did he just say Tumor? I reached for Ian. I couldn’t help it, I just let the tears flow. I didn’t care who saw. This was raw and this was real. We held each other close. I could see the worry written all over Ian’s face. In a moment not to longer, the Chaplin came to visit us. I was still in shock, but she was the calm we needed. She offered us assistance with anything we needed. She offered her ear if we needed. I was super appreciative of her in that moment. After her, two other doctors showed up to tell us that they were very certain Ian had a Lymphoma of some kind. Ian couldn’t help but ask them what he did in his life to get this. They just exclaimed that it was nothing he did. I cried so hard that day. I cried because the answer we were looking for was so terrifying.

The first day was pretty uneventful and for good reason. Ian just needed pain meds and a good day of rest. After that, the first week was full of different biopsies and tests to determine what the tumor was. It was a waiting game of meds, restless sleep, not being able to eat and different levels of pain. Finally, an oncologist gave Ian the option of starting chemotherapy to get the pain under control. From all the scans they saw, that tumor looked like it was suffocating everything from colon to kidney, and if they didn’t act then, it could get worse. Ian immediately told the doctor he wanted to start chemotherapy.

His mom and I were able to sit with Ian his first treatment. At first he didn’t feel anything. Then after two hours, came uncontrollable chills and he complained his body didn’t feel like his. I watched him the whole night. I was scared. I wanted to make sure he was going to be ok. It was seven hours of hell but he came out on top. The next morning, I awoke to find Ian smiling at me from across the room. He was sitting up for the first time in weeks and he wanted real food!

Over the next couple of days, he took it slow, walking different halls in the hospital to build strength. I was so proud at how hard he was fighting. He ate bacon for first time in a while and he said it tasted like heaven! I cried tears of happiness. Chemo is heck of a cure!

Wednesday the 14th started like any other day. Tech came in to take his vitals and then we got word that he needed a lumbar puncture with a procedure to put chemo in his spinal column. Ian was diagnosed with Burkitts Lymphoma which is a super rare and super aggressive cancer. Only 1,200 people in the United States gets Burkitts Lymphoma a year. One of the major places that Burkitts can spread is the spinal column and fluid. The doctors were doing everything to slow the spread.

The next day we were able to take Ian home for the first time in two weeks. He had two demands and I couldn't be happier to get that for him. A hot shower and victory nachos. Victory nachos for all the crap he has been through in the past two weeks. It was so good to sit with him and eat Mexican food like everything was normal! He even wore Super Man shirt that his mom and grandma got him!

Here we are, almost two weeks later back in the hospital. After severe headaches plagued him for the week he was released, he also had an attack of belly pain again. It made us sad to come back to the hospital but he needs to get better.

Every three weeks for several months, Ian will be admitted to the hospital to receive three days straight of chemotherapy. As we speak, Ian is in his 29th hour of his 2nd round of chemo. So far the only symptoms he has has is intense waves of nausea. Thank heaven for anti-nausea meds!

As the doctor put it, it will be a few months of hell but the prognosis looks amazing. We caught it early and I thank heaven every day for that. All the tests have come back negative which means he has no cancer in his bone marrow, spinal fluid/column, or brain. The tumor has also lost 3 cm. Take that, you piece of crap cancer.

Through this whole experience, Ian has not once let this cancer get to him. He still makes his famous jokes, and his laughter is music to my ears. When his mom, grandma or some of our friends would drop by, everyone would talk about the good times and remind him what he was fighting for. We have made some amazing connections in the hospital and a lot of people stop by just wish Ian and I well for the day. His amazing nurses and doctors have been so gentle since they know that he in all kinds of pain. If we were to go through a horrible experience, at least were not going through it alone.

I am also grateful for all of you reading this weather you are our family or friends. You have been an amazing support system. Its easy to feel alone when going through something so traumatic. Every day when I log on to Facebook or my email, I see messages of hope and positivity and that is what will get us through this!

Now I end with this. My boo, my fiancée, my love, you are my hero! I have watched you at your lowest and I have watched you at your best. This hospital stay, even through all the positivity has been miserable and you get up fighting every day. You realize you can’t do this fight alone and when you reach out, it is an honor to help you. Your Mom, Grandma, friends and any nurses or doctors here would agree. You are loved and you will never walk alone. Even though this fight is bodily yours, mentally and spiritually your family and friends are here to guide you. Now lets pretend this is the ending of Office Space the movie but instead of taking baseball bats to an outdated fax machine, we a beating the crap out of your cancer.

XOXO from your future wifey! I love you so much!