chapter 2 of the view of cancer from the passenger side

This is a continuation from last Tuesday 7/12/10.

I don't want to bombard you all with posts nor do I want take away from Brian, but I do want to finish what he asked me to do.

So I left off after when we first found out Brian potentially had cancer and how we spent the first weekend trying to understand what was going on as well as trying to come to terms with the news we just heard.

We found out April 1st, met our oncologist April 2nd and by Monday April 5 we met our surgeon and were having a lymph node biopsy. On Monday we went in for pre-op meeting and Tuesday we had surgery. After meeting with the surgeon we decided everything was REAL and it was probably time to inform Brian's parents on what was going on. We had them come to Des Monies Monday night and sat them down to tell them. It was hard, how do you tell your parents you have cancer? For that matter how do you tell anyone you have cancer. Calling our closest friends was difficult, how do you start the conversation Hi, you got a promotion at work awesome, well I have cancer. Can someone please write a book on this!!! Everyone reacts differently and it is hard. Anyways, it was pretty evident Brian's parents were in shock and all I remember them saying is we don't know for sure, in my head and Brian's we knew for sure. After seeing the MRI it was pretty evident something was going on and it was serious.

We woke up EARLY Tuesday morning for surgery and being as organized as I'm I set out out all of Brian's clothes, I rented 4 movies, bought Gatorade, jello, had a puke bucket, towels, everything (even a blow up mattress in the living room for his parents to nap on as they watched him when I ran to school to study for a test). I was prepared! We checked in at the surgery center and they allowed me to sit with Brian in pre-op. As they got Brian ready for surgery the nurse told him to change out of his clothes but he could leave his boxers on and socks. Brian with deer in the headlight look turned to nurse and goes..''ahhh I forgot underwear today!" YES I had set them out the night before and for some reason he put everything on but his boxers, why? They nurse laughed and walked out. They took him back and I went to sit with his parents in the waiting room. An hour later they surgeon sat me down and told me they were able to confirm it was lymphoma. I liked that they told me separately because it allowed me to gather my thoughts on my own. My life was about to change and I needed a moment to digest it all. We took Brian home and let him recover, AKA watch sports ALL day. He recovered well from surgery and by the wed. afternoon was able to return to work (p.s. Brian makes all of this seem easy but don't let him fool you it is not he is just an amazing person and can handle all). The rest of the week went on as normal, I had to change his bandage 2 times a day and that was pretty easy.

We continued to lay low Friday after Brian's surgery just enjoying each other's company and talking about creating our battle plan to beat this. We went to bed early because Brian had to work sat. morning and I had to go into school to practice for a practical. Sat. morning we both got ready and were ready to leave when Brian said he didn't feel good. I told him take some Ibuprofen and go to work. I got in my car, sat, thought about it and I got the idea to go in and take his temp. WHY? I have no clue, but I think back to what if I hadn't. When I went in his temp was 100.4 ( I will never forget). I told him NO WORK, called my sister and she said be safe and take him to urgent care. Thank God our family doctor was covering urgent care and was able to see Brian. By the time I got Brian to the doctor, he could barely walk, he was white as a ghost, tired, and short of breath. The office was literally 5 min away and we waited maybe 10-15 min. When Brian was called back and they took his vitals his temp rose to 103.6. WHOA! I was freaking out inside, heart racing, palms sweating, stomach in knots (we all know 103 is not good). Our doctor thought perhaps his wound was infected so he put him on antibiotics and sent him home. I then spent the next 5 hours trying to break his fever which by the time we got home was 104. I laid him on the couch and began putting everything in the freezer on him. He had corn on his neck, broccoli on his chest, cod in his armpits, chicken on his thighs, etc. He was so HOT the vegetables were completely defrosted and mush within 10-15 min. He had be given fever reducer but it hadn't kicked in. I was force feeding him Gatorade every 5 min he had to drink a 1/4 of the bottle. Every 10 min I changed the frozen food on him. He thought I was crazy running around like a mad women but I knew if it went any higher he was going to the ER. When Brian was a child he had fever convulsions and loss consciousness and had to be resuscitated, add this to the million things running through my mind at that moment. I'm CPR certified but when it is your own husband you are looking at you forget everything. All I could think about were the steps to CPR, I was googling it, shoving Gatorade down Brian's throat and changing frozen food on the family jewels all at the same time. I felt like I was in a circus with 100 balls in the air trying to juggle. Once his fever broke (well was at 100) I sat down exhausted! I then realized how real this was, this was our life now, I wasn't ready to be the caregiver but had to be, and I was SCARED. I'm 24 my husband has cancer, has high fevers, I'm in school, my husband is my only income, HOW AM I GOING TO SURVIVE?

That weekend was and has been the worst weekend by far through all this. I never could have imagined that someones health could change so drastically so fast. I was literally scared. I will never forget all the events of that weekend. It hit me like a brick how important the role of the caregiver is. You have to be the post to lean on, be positive/optimistic, have 100 hands to do 100 things at once, be flexible so you can be torn in a million directions, and yet take care of yourself. I said I do in sickness in health but I didn't know in sickness meant literally 2 years in to your marriage. God challenged me during this time. I didn't think I would survive and I learned from that day on that the road to beating cancer is not easy, but is doable.

Sunday Brian and I woke up to soaked bed sheets. His incision was leaking...and I mean leaking. We couldn't see the surgeon till Monday so all day I had to change his bandage. By all day I mean every hour and with every hour he had to throw away the shirt he was wearing because it was destroyed. I thought I finally conquered the fever the night before only to wake up to the next hurdle.

We saw the surgeon Monday and he took specimens of the incision. He informed us that if Brian did have an infection it was not in his wound, which meant it was somewhere else. If I hadn't been a clean freak before, this now meant I was a super clean freak. Now, I was skeptical of anyone being near Brian because everyone was a GIANT GERM. My hands smelled like bleach for a week. Everything top to bottom I vowed would be germ free (I quickly learned this is a impossible task and it did not last long, I'm still a clean freak not a super clean freak).

The next few weeks we spent in and out of different doctor's offices while we waited for Mayo to diagnose Brian with his specific type of lymphoma. By then I was a pro at going to appointments. Hint to all caregivers/support personal take an IPOD with you. It would be so nerve racking sitting in the lobby because it seemed like everywhere we went the news got worse. So I found the IPOD to be an excellent tool to distract Brian from thinking about what was to come. We found out from the PET scan that he was at least stage three because it was widespread...by the end of the diagnosing period he was stage 4. In the mean time we were set up with a fertility doctor. With everything going on Brian and I had serious life decisions to make. If there was a slight possibility of having children then we had to bank Brian's baby makers (PG). I was in school, could barely find time to cook for Brian now he has cancer and I have to decide if I want kids. Brian said after our first fertility appointment, "you know people say kids are expensive, but we are just talking about possibly having kids in the future and it is already costing me money. I'm renting them a frozen condo."

As things finally tamed down and we weren't at the doctor's daily ( still eagerly waiting for Mayo) Brian called me at school and said he had a rash. I stopped studying headed to his work to look at his rash. Literally head to toe he had a rash. I called the on call doctor who told me it was a drug rash(I didn't believe this because he had been taking the drugs for over two weeks and had no reaction till then). I told him to go home and rest. By 3 am he broke out in another high fever and his rash was even worse. I immediately thought to myself this is starting all over again, I can't do this. Luckily, he responded well to the fever reducer (lets not support any specific brands here) and was able to go back to bed. Friday April, 23 was supposed to be my glorious catch up on sleep and school work day (no class!!!!) turned out to be 'go to the hosp. ASAP day'. I called our oncologist first thing in the morning to tell them about the rash, they said get here now, so with no shower we got there now. Mayo literally faxed over their findings at which our doctor told us what it was and he was now calling him stage 4. He said he did not want to wait any longer and admitted Brian to the hospital. We ran home grabbed the essentials and without eating or showering I drove him straight to the hospital (I didn't eat for almost 10 hours). He had to have some tests done and then was able to start chemo Friday night. I felt like so much had changed in 24 hours. We were whisked to the hospital and didn't have time to take in the news of stage 4. In the hospital we found out that Brian more then likely did not have an infection which was causing his high fevers but probably was experiencing tumor fevers. This literally was the first indication other then his lump on his arm that something was wrong.

As scary as stage 4 is and as much as I don't want it to be stage 4 I was relieved. It is so much EASIER knowing that for one week out of three I have a break. I don't have to be responsible for bleaching everything, I don't have to run to hy-vee for Gatorade and frozen food, I can continue school knowing someone else who is trained is watching over him. I literally had a weight lifted off my shoulder, it is selfish I know, but I realize this was God's plan because I would not be able to handle all of this. I praise God daily for all of the wonderful nurses, nurses aids, and doctors who look after Brian. They are saints. You don't understand how critical these people are in the world until to you rely on them.

I hope this helps people understand what it is like sitting on the passenger side. Sometimes I wish I could be Brian. Although, this is incredibly hard on his body and mental taxing you don't understand what it is like to be strong 24/7 and having the pressure on your shoulders. This is selfish I know but until you are in the passenger seat trying to keep things sane you don't understand. There is only so much my mom and dad can do and Brian's parents can do to relieve some of the pressure. I appreciate there help and appreciate whatever anyone else has done. I can only imagine what it is like to be a parent because I know that in my situation there is no one else that can take better care of Brian then me. I know I take on all the weight of the situation but I do so, and I think others in this boat would agree, because it is the only thing you can do. I can't wave my wand and make it disappear all I can do is suck it up and assume responsibility.

As a caregiver the hardest thing to learn is that at times you have to let go of control. You already have a big problem you can't control so you hold onto everything that you can control as a security blanket. I had to admit that I couldn't do it all and had to ask my parents to come up and clean my house, those who know me know this was hard because I love to clean. I felt horrible knowing I can't clean my own house right now because I have so much going on. Having someone come and clean my house and fold my laundry and put stuff away in different spots was difficult because I lost control of something that I actually could change. I can't tell you how much I HATED Hy-Vee the first few weeks. I was in that store daily usually twice a day getting perscriptions, food, Gatorade. People would offer to go and I would complain however I had to go. The only thing I could do for Brian is run those errands and as much as I hated that the checkers, pharmacist, and manager knew me becuase I was there constantly I had to do it because it was my way of controlling the situation. To everyone out there that is helping out a friend in a difficult time DO NOT TAKE OFFENSE when they freak out about you folding towels the wrong way or you putting a pan in the wrong spot. Really you did nothing wrong but the person literally loss control of one of the only things they can control and as stupid as it sounds it is a big deal mentally.

I look on facebook of all my friends who are getting married, having kids, going on vacation and as much as I would love to do that I can't. However, I must say I wouldn't change what is happening to Brian and I for the world. We have learned more the past few months then what some people learn in a lifetime and we are 24 & 25. People may think it is not a happy time but you create happy times and we are turning this into a positive time in our life. People don't grow when life is easy, you grow as a human when you are challenged. Brian and I have created a tight bond that is indestructible and I have learned more about myself, my faith, and my strength then what I ever thought I had. What I fear is that in the future when we beat this and life goes back to normal I will lose everything I learned. I don't want to go back to my mundane routine because I don't want to regress on the person I have become. What comes after beating cancer?

This is long, real, and brutally honest. I'm sorry. Brian asked me to write my view and this is what I had to say. Hopefully, someone else in my shoes can relate and hopefully it will open a window of insight to what it is like being the spouse of a cancer patient. You will never understand completely till you are there and if you are there; YOU CAN DO IT, YOU HAVE THE STRENGTH INSIDE, JUST BELIEVE IN YOURSELF.

Stacey