Surely throughout life everyone has thought this…”why me?” Whether it be a happy event or not so happy one. Saturday I took all three of my babies to the zoo. While we were there I felt surrounded by happy families. The ones that stood out to me where of course the ones that had a Mother, Father and baby. It made me sad because Brock will never know that feeling of having both his parents with him. It was his first trip to the zoo, first carousal and train ride. There are SO many firsts coming up…a lifetime of firsts that I will be the only parent for him. It breaks my heart for him, it is just unfair and I do not know the reason why this is the hand he was dealt.
While we were there, looking at the happy families and expectant moms that seemed to be everywhere I thought to myself they look like there are living in a world of complete bliss. They are so unaware of the heartache that lives within me now daily. I hope they never know how loosing their child’s father, their love feels. Of course I know that everyone is fighting some battle in their lives right now. Just as they have no idea what I have been through neither do I know what they are going through. I remember thinking while looking at a pregnant woman…what would she think if she knew the father of her baby would die 3 months after their baby was born? It made me think…why me? Why did this happen to Brock? To Justin? To me???
Today while thinking about this again…why me? It occurred to me…why not me? None of us can see the whole plan for our life. Justin came into my life exactly when he was suppose too. He saved me in many ways…ways he only knows. He showed me exactly what true unconditional love and happiness are. He was sent to show me those things. Like I said at his memorial he changed my life…he made me a better person. We changed each other. We were brought together for our short time because we needed each other. We were given Brock, our sweet son. In my heart he left too soon…selfishly I still want him here with me and his children.
So this brings me back to the why me and the why not me? Justin was brought into my life and taken from it because I would not be given more than I can handle. Daily I miss and mourn him but know that one day I will see him again. I wake up trying to have an open heart and make the decisions that will one day let me be with him in a place that we can never be separated again for all eternity. His body gave out on him but his soul continues to live! He is my soul’s counterpart and one day we will meet again not in the physical world.
When we left the zoo Liz and Garrett were talking to me about how many firsts Brock had with them today. We also talked about how his Daddy, Justin had watched all these firsts as they were happening. I asked them where is Brock’s Daddy? They both pointed up to the clouds in the sky and said one word…heaven.
Yes…why not me? Knowing everything I wouldn’t change anything. Even though Justin’s passing from his body and his soul going to heaven is incredibly hard everyday and just breathing at times seems impossible he came into my life exactly when he was supposed to. I am forever grateful and glad it WAS me. FLML
This picture was Brock’s first real bath…taken with his Daddy. This photo is so special for many reasons one being it is one of the few pictures of Brock and his Daddy. They look the same with their bald heads. I love that Brock is cradled in Justin’s arms…he loved his children so much.
The weekend before Justin went into the hospital we all took a bath together. Brock was between us resting on our legs looking at us both. Justin’s breathing was so shallow by now and he was beyond exhausted. Sitting in the bath the three of us is a moment I won’t ever forget. I feel robbed of being able to have more moments like these. I can only hope that Justin still cradles Brock like he is in this picture. This is just a glimpse of what should have been hundreds of moments with Justin…
So after the birth of our baby boy Brock life went on as it always does. Sometimes I wish it would stop even for just a moment to let me catch my breath. Justin’s chemo continued and the next week he had 2 short treatments and 1 short treatment the third week. Each cycle was 21 days long and he would have 3 of them.
New Years eve was low-key to say the least….we had a 2 week old. I remember us laying on the couch together barely making it to midnight. I was exhausted from round the clock feedings and Justin was exhausted from recovering from his first round of chemo treatments. He had bought us some champagne and ice cream to share that evening. At midnight we toasted to our future. How things were going to be different come summer time. How once again we would spend endless hours at the beach with all our children. We were looking forward with so much hope. Hope is good thing but right now it is gut wrenching at times. I feel like now I miss and mourn him but also mourn what our lives should have been. I wish I could have had our future…I don’t know where to go from here.
His next cycle started on January 3rd. He had five 8 hour treatments that week. Brock and I would bring him lunch and sit with him until time to go pick up the kids from school. Brock is such a good baby…incrediable happy! Even sitting for hours at the oncology office he was good. Justin would sit in his recliner hooked up to the IV and I would sit next to him nursing our son. Those moments were definitely moments where I thought to myself…how did we get here??? How am I nursing a newborn at chemo? How could I not…if Justin was there so was I.
Justin went for a cat scan after the second cycle of treatment was over….they wanted to see what, if any effect on the tumors had been made. This was on Wednesday January 18th, my birthday. I remember him walking up to me that day and embracing me…taking my breath away. When we parted I looked at him kind of puzzled, what was going on??? He just smiled and said “Happy Birthday.” I could tell by the look on his face he was anxious for the results of the scan that would come in a couple of days. Please let the poison they were putting in his body be working…please!
The following Monday we went in to see Dr. Mahmood for the results…there was good news and bad news. The good news was there was significant shrinkage in the tumors in his chest and abdomnen…much more then they had expected! Bad news was they were recommending a 4th cycle of chemo but by doing that 4th cycle it would significantly cut down on the possibility that he would have to have lymph nodes surgically removed. It is such a balancing act. He opted for the 4th cycle. It felt like such a victory that day…he was beating the cancer! After the second 21 day cycle was over was the only weekend Justin really felt good again. Let me just say he did not lay in bed on the days he felt like compete garbage. He fed, bathed and loved on his children. He continued to function on every level…everyday! He was RISING everyday even though most would have given in to the self-pity of the cancer. He had a valid reason but continued….he did not give an excuse.
That weekend he was SO aggravating because he felt SO good! I remember jokingly saying to him if this is the new you…feeling so good I am not sure I can handle it! 😉 Again, it was a glimpse of the future…a future that never came.
After this cycle the 2nd one he started coughing…intially we thought he had a cold. Maybe he did or was the beginning signs of how the chemo had effected his lungs? We will never know for sure. Every time he went in for a treatment he had to fill out a “How I feel Today” sheet. He put the usual stuff…fatigued, no appetite, metallic taste in his mouth and now a cough. He would go through bags of cough drops everyday. He would leave the wrappers everywhere! I still find cough drops and wrappers places…the car, my purse, the diaper bag, beside the bed. I love the reminders of him even if I feel the effects of them to my core. They make me ache for him. Talking at times became difficult for him and he would cough until he was drenched in sweat and at times vomiting. The way Justin approached anything was you just push through it and that is what he was doing…pushing through all of this.
At the beginning of his 3rd cycle he woke up with a sore neck which having aches and pains was nothing new anymore but he said his neck felt puffy also. As the evening went on the stiffness kept increasing. The next morning his neck was extremely swollen…he called his oncologist. He had developed a blood clot around his port cath in his chest. Over the weekend he gave himself blood thinner shots that he called horse needles. I remember watching his give himself these injections in his abdomen and thinking how just a few short months ago he had never even had surgery. No matter what he faced he took in on fulling and so bravely. The blood thinners did not work and the port had to be removed. The remainder of his treatments for this cycle were done by IV and they said he would have a PIC line put in his arm for the final cycle.
Justin sent me this picture of him “relaxing” at one of his final treatments. Quite a view wouldn’t you say?!?
When he told me about the blood clots, port removal, PIC line while still trying to not cough I jokingly told him why can’t you just be a “normal” cancer patient without colds and clots?!? Of course I was joking…you have to laugh, remember! What else could we do at this point???
Brock looks thrilled to be flying for the first time!
Between his 3rd and 4th cycle we went to his visit his family in New Jersey. He talked about all this food we would eat, people and places we would visit. To say he was excited when the airplane touched down was an understatement. Seeing him in his element surrounded by the people who loved his unconditionally was such a blessing. All his brothers and sisters were able to come in and be together. everything happens for a reason and we were all meant to get together that last time in Feburary…little did we all know that most of us would be gathered again soon to celebrate his life.
This was his Final Treatment…this shirt is also the shirt he wore the last time he held Brock outside of the hospital in. I have it saved in a ziplock baggie..it smells like him still. It is the little things that mean so much now.
His final round of chemo was so exciting…who is excited to feel like garbage again? Justin was…it was the last time he would have to go through this. We were so thankful and optimistic. This cycle was like the past 3 except now he had the PIC line in his upper left arm for treatment. His final treatment on March 8th 2011 at 10am. I remember sitting next to him so proud of him and what he had accomplished….waiting for his IV bag to be done. His FINAL IV bag! They were going to remove his PIC line and he wanted me to record it for him. It is the only recording I have of him…his voice. This was a day of celebration!
Today is a gift and tomorrow is not guarantee. We were looking forward to our future with such hope and excitement. Justin had done everything he had to do heal his body but we did not know his body was only getting ready to make him have to fight once again. When is enough, enough?? The future…our plans were out of our hands. We would be praying for a miracle…
This weekend last year was a weekend I will remember forever…it was the weekend I saw an amazing man perform an amazing feat. This was the weekend Justin complete the Ironman Woodlands 2011. How the official website describes the race is like this….
Athletes will begin with a 2.4-mile swim in Lake Woodlands. Next is a 112-mile bike course that will take participants west through the scenic, rolling farmland of east Texas. The day ends with a 26.2-mile run course entirely within The Woodlands that concludes with a spectacular finish on Waterway Ave.
What is it really like??? As a spectator I can tell you the last thing anyone is thinking about is the scenic rolling farmland of east Texas. Standing next to the water I feel like I am about to vomit just thinking about all Justin has to do that day, for fun?!? This is what he thinks is fun??? Many times while exercising in spin class together he would tell me to “embrace the suck.” What he meant was for a period of time things were going to be uncomfortable but when you get to the end and it is over you will be glad you finished and did you best….embraced the suck per say.
This is the beginning of his race…we are walking to where he enters the water.
Under normal circumstances this race is almost unfathomable to just the sheer length of it…each of the three portions of the race is HUGE but they do give you 17 hours to complete it in. Standing on the sidelines for the time 16:29 was exhausting to me and my newly pregnant self last May but swimming, biking and running for that long, for “fun” is just plain crazy!!! These were not normal circumstances for Justin though. A few weeks before the race he found out he had a stress fracture in his left tibia. Most people would have withdrawn from the race, Justin was not most people. He was so strong physically but with was even more so strong in mind. Also, we know now he had end stage cancer. Point being he should not have been able to complete the race that day but he did. With a fractured leg and cancer he completed the end all of triathlon races…so what is your excuse in what challenges you each day?
Justin used motivation to get himself ready for whatever the challenge was in front of him and the Ironman race was no different. He would watch YouTube video constantly! Laying in bed he would wake me up to watch a video I had seen a hundred times already. One particular video is one with the song “Until I Collapse.” I played that song at the hospital for him in ICU almost daily for him. I know he was fighting SO hard to live and in all actuality running the race of his life in that hospital bed. Last May Justin gave the Ironman race everything he had physically and mentally…until he collapsed when he crossed that finish line. On April 2nd when he left this earth he, again had given everything he had physically and mentally…until he collapsed into the open waiting arms of our Heavenly Father. So what is your excuse? Are you going until you collapse and giving your all?
On January 21,2011 Justin wrote…It is about mind over matter. If you don’t mind, it don’t matter. On his blog the countdown clock is still going for the Ironman race…he also talks about the beginning of his training here.
Can you see him?!? He is out there, one of the green caps in the mix of thousands of green caps.
I remember when we rode up on his during his biking portion he was yelling at us that he was cramping terribly in his legs. He was worried he wouldn’t he able to finish. He also said he could not lean completely over into what he called “arrow” position because of the cramps. After the race on the way home he told me at one of the aid stations during the bike portion of the race he go off his bike and into a tub of ice water…that he felt overheated and delirious. An official had been pacing with him while he was “running” his marathon watching him and Justin told him to leave. If they are watching you, they are about to medically pull you from the race. He wasn’t going to let himself get pulled. What we found out in October is that one of his kidneys was not functioning at all…that is why he was cramping so badly. Not only does he have a fractured leg, cancer but only one kidney functioning but finished…what is your excuse?
On January 23, 2012 Justin wrote down the following quote… “The only one who can tell you ‘you can’t’ is you and you don’t have to listen. He was not writing about a triathlon race here but the race he was running for his life…against cancer.
The day of the race was much like link above shows…there were people from all walks of life. Every shape and size. People were crying by the last 8 mile loop of the marathon. There were people being carried off in stretchers and hooked up to IVs in a triage area with ambulances waiting by. People were taken to the hospital that day…people have died during this race. It was dark and closing in on the 17 hour time limit when Justin appeared and was closing in on the finish line. He yelled out “can I make it?” Meaning…did he have enough time…we didn’t know for sure. We told him yes…he HAD to run. He did not come that day to not complete the race. With a fractured leg, cancer and only one kidney functioning Justin ran across that finish line. No excuses…he had given his all. He gave everything that day. To witness determination like that is indescribable. He was amazing to say the least. Many times I would tell him that…he was amazing. Sheepishly he would reply to me that he was not but just a normal man but he was far more than that. He was an amazing man who I love so very much.
This is what Justin was awarded when he crossed the line…it cannot be bought, only earned!
The shirt Brock is “wearing” and will have to grown into is the same shirt Justin was given at the end of his Ironman race, the same shirt worn for his first day of Chemo along with his “quits” and also the same shirt worn when he entered the hospital on March 16, 2012 for the race of his life.
One other video he watched was this one….entitled, The Race. He watched this after he learned about his fractured leg but the message holds true for life. We all fall but life is not about the race but the RISE. If I have learned anything, life has “falling” points but you have to rise. You cannot wallow in self-pity, it will get you know where. Justin would want me to rise in my race of life. We were given Brock to rise with.
The Tuesday after he completed the Ironman he got this tattoo. His feet were bruised and all torn up still from what his body had been through that day. He was so proud to of completed the race and wanted something permanent to wear showing his accomplishment. To wear the Ironman brand is an honor. Justin was an Ironman before last May and he died an Ironman…embracing the suck and RISING until he was called home. Such an amazing man.
That first week of Chemo was a busy one. He was in treatment everyday for at least 8 hours a day and I had two doctors appointments…one with our high risk doctor on Tuesday and another with my regular OB on Friday. Overall we had a normal pregnancy except for me having gestational diabetes which is why I saw someone other than my OB. At my doctor’s appointment that Tuesday Brock had decided to decrease his movements and pretty much not move AT ALL! It felt like that appointment went on forever! It was either he needed to move or I was going to the hospital to have him that day. While I was laying in one recliner connected to a fetal movement machine Justin was across the street in a recliner connect to an IV, that we hoped was saving his life. I was scared…what if they say I have to deliver right now??? I cannot do that alone, I need Justin. Not a day goes by that thought still goes through my head…I need him here!
Again, calmly Justin said to relax…everything would be ok. The past week they had pushed my c-section back another week because of availability at the hospital. I cried…I was ready to have this baby! I felt HUGE and I was SO swollen! He calmed me then too…
Thank goodness Brock decided to move and they let me leave the office but Dr. Rowe said I would be having a baby by Christmas not on the date they had me scheduled…December 30th. I drove over to chemo to sit with Justin and bring him lunch. When I walked in Pam, the oncology nurse said I guess you all will be having a baby anytime now. I nodded to her. How is this my life…sitting with the man I love at chemo pregnant. Who envisions this happening in their life??? We talked for a few minutes, then we both fell asleep in the chemo recliners.
Wednesday I finished my Christmas shopping…not sure of how much time I had left to get the last-minute things done. I took Justin, my love his lunch and stayed for a bit then went to work. I was exhausted.
Thursday was the usual work, sit with Justin, eat lunch…a normal day at chemo. He seemed to be tolerating it well for the most part we felt. He wasnt sick…yet. The only side effect he had been experiencing was the metallic taste in his mouth which the lemon heads and sour patch kids I brought him helped with. We ate Jason’s deli everyday that week…tomato basil soup and turkey sandwiches. That evening our families were going out to eat together with his sister…should be a nice evening and a reason to celebrate. Justin was almost done with week one of his treatments!
We went to eat at nice restaurant. I felt like an Easter egg in a dress with my huge round belly. He said I looked beautiful. While sitting at dinner I was getting so uncomfortable…by this time of the day I was usually stretched out. Brock was pressing his behind into my ribs SO hard and I was having a ton of Braxton hicks…or so I thought they were Braxton hicks. Justing leaned over and asked if I was getting ready to go that he was getting uncomfortable in his jeans from his incision. We were the walking wounded the two of us. I said yes and that when we get into the car I have to take my tights off…they are just too “tight!” He said he needed to unbutton his pants. Again, we had to of looked ridiculous! So as we rode with my parents I took my tights off and he unbuttoned his pants. I began to feel sick and immediately needed to vomit. No where to pull over it happened in the car…all I could think of what a nice expensive dinner I just threw up!
Back at home resting on the couch together now in our monkey pajamas I felt a weird “thump” and sat up. I looked at him and said that I had a weird feeling from inside my stomach. Justin suggested it was just the baby and he was probably moving around now that he could. I wasnt so sure, it didn’t feel like movement. I went downstairs to the restroom…I peed and peed and peed. It wouldn’t stop! I walked to the kitchen and then there was a puddle at my feet. I yelled for Justing to come downstairs…I motioned to my feet and asked him what was going on, what was all of this water! He looked at me confused too. You would think with this being our 7th baby we would have known! Neither of us had experienced this though!
I called my doctor, fixed my hair and makeup and off the hospital we went. Justin was driving like a crazy person…flashers and all. He made the car fly into the emergency room bay…the same bay we had gone too back in October for his swollen leg. He ran inside to get a wheelchair. I could walk for goodness sake! I walked around the car closing the door he left open…silly man! While he parked the car I made a puddle in the ER waiting room, embarrassing! On our way up to labor and delivery I began to think maybe I just peed all over myself…this cannot be really happening! When we arrived at the front desk I told them just that…I thought I had just wet my pants apologetically. They suggested since we were already there they wanted to check. Okay, I agreed. As we started to the room a huge GUSH of fluid began to flow from me…it went EVERYWHERE! My clothes were soaked…shirt, pants, shoes…everything! It was then I realized I had not just used the restroom…we were having this baby I tonight!
After I was all hooked up to monitors and an IV they wanted to wait a few hours since I had just ate. Brock’s heart rate was dipping every time I had a contraction…it was time to have him. I remember them wheeling me back to the operating room. Justin came in and was sitting beside my head…stroking my hair. He knew I was scared. I wanted this part over with.
The whole time I was pregnant Justin and I had debated on where our baby would have hair. My two kids had a ton of hair at birth and his 4 were completely bald. The debate was about to be settled!
At 12:29am Brock Donahue Phillips came screaming into this world. He weighed 6lbs 12ozs and was 20inchs long.
I remember hearing Brock cry and then Justin cry out loudly…He is BALD! He is BALD Stacey…he is beautiful. We looked at each other and both just cried. In the middle of all the hard, bad times we had experienced over the past months here was this miracle born to us. He was perfect and such a sign of blessing to come. I will never forget how Justin sounded that night. I love my bald baby…he looked just like his daddy!
Back in the labor and delivery room we both laid down to sleep until we could have Brock with us a short time later. The nurse brought me a very angry little man when she wheeled Brock in…he was hungry. I remember her taking his clothes off and putting his under my gown…skin to skin. He latched on and nursed and stole my heart. I looked up to see Justin watching us with tears running down his face..he said we looked beautiful.
The sun came up and it was time for Justin to go…he had to go chemo. It was so unfair but I knew he had to go. He held Brock and he started to cry, he said he did not want to go. He walked across the street to his chemo treatment.
Brock could not have timed it better for us. He made sure his daddy was there when he was born. Any other time of the day and it might not have been possible. It all happened so quickly if Justin had been at treatment there might not have been time for him to make it. He also was here for Christmas this year, his only Christmas with his Daddy. This is one of those times where I do not cry because it is over but smile because it happened. Justin was there for Brock’s birth…he got to see our bald little baby come into this world. I am so thankful that I had Justin with me that day, we carried each other through the hardest times of our lives. I feel him carrying me now, still…there is just no other explination.
Finding out I was pregnant with Brock was a complete shock to say the least. I had not planned to have any more children and between Justin and I we had 6 babies already. When the test came back positive I began to panic to say the least, Justin was the calm one. He said he loved me and that I was carrying his child. That our love was growing inside of me. Besides…once you have 6 kids what is one more really, right?!? We had talked a few times about if we would want a child of our own. We did. I guess our wish had been granted. If we would have waited until the time was “right” we never would have been able to get pregnant…the chemo would have taken that option away and “someday” would have never came. Every baby is a miracle but Brock is the next step above that. There were so many obstacles and reasons he should not be here there is just no other explanation. Justin had end stage testicular cancer and I had fertility issues. Brock is miracle sent to us for a very special reason. He is a living miracle and my saving grace. I would be lost without him.
Being pregnant during all of this was mind-blowing scary. Life is a gift not a given…yes, we all say that but it really is! During the past 5 months I have witnessed a our precious son enter this world and his amazing father leave it. Both have changed my life obviously. To watch our son..screaming and taking his first breaths and a short time later feeling the warmth leave Justin body and his breaths stop were both unbelievable moments in my life I will never forget.
When we talked about names and if we would be having a boy or a girl I thought we were having a girl, after all Justin had 3 beautiful girls already and one sweet son. Either way it did not matter to us…we just wanted healthy. He joked that he only made boys in Texas…his son was conceived in Texas and the girls in New Jersey. I guess he was right!
I felt many times like we looked like a walking lifetime story…him with cancer and me pregnant. I was so proud to be carrying our child. Driving in the car, sitting together…anywhere really he would touch my pregnant stomach. I loved that. He made me feel safe, protected, taken care of. In some ways he still does.
Everyday I am thankful we were chosen to be the parents of Brock. Last fall while laying together Justin said to me that maybe we were given Brock because he wasn’t going to be here with me. He was right…why did he have to be so smart. Why could he have not been wrong this one time? I cried tears of joy when Brock came into this world at 12:29am and cried tears of complete heartache when Justin left it at 7:31pm.
This picture was taken March 16th…Brock was 3 months old. He and I were upstairs alone letting Justin rest and get some sleep.
Do you know what you were doing this evening two months ago…March 15th? I do. I was at our house making dinner for Justin and I. Brock was sleeping on the couch upstairs, Justin was upstairs with him. I was downstairs in the kitchen. This would be the last night we would spend alone together not in a hospital. I brought us dinner upstairs but he did not eat anything…he hadnt had an appetite in a while, we assumed it was due to the chemo still. He couldn’t really talk because talking made him cough. That evening I asked if he would please call his oncologist in the morning. He did not think there was really anything they could do because it was just a cold that had to run its course. His suppressed immune system was making that a challenge. That night he coughed and coughed and coughed some more. He coughed until he vomitted…he had done that several times over the past month.
The following morning when I heard him downstairs moving around and coughing Brock and I went down. I gave Justin his phone and asked him to please call his oncologist. He finally agreed too and called. We dressed and left the house together for the doctors office…it would be the last time we would leave the house together.
I can still feel him laying beside me, spooning me and recall his shallow breathing and what his stomach felt like right before he would start coughing. When I felt his coughing about to start I would reach for the glass of water we know kept next to the bed and hand it to him, then open a cough drop for him. Nothing had to be said…I knew what he needed. We knew what each other needed…
Tonight I sit here missing him and cannot believe that was 2 months ago already. Tomorrow our sweet baby Brock will turn 5 months old and it will also be the day 2 months ago Justin entered the hospital. We fully intended him to be walking out with us one day…how I wish that day would have come. I physically ache for him daily. Our son smiles and brings such joy to my heart. Every milestone is so bittersweet. I never imagined doing this on my own…raising Brock. Being his only parent. It is just so unfair and gives me such anxiety. What if something happens to me? Bad things happen, that has been proven. His father was an amazing man he will have no memories of his own of. It makes me so angry. How does this happen? WHY does this happen. I want answers but there aren’t any.
Can cancer show you love? Absolutely it can. Cancer showed Justin and I exactly what was important and how so many things that keep us busy day-to-day were very insignificant. It was the little things. Spending time with each other, with our children…with family. Family does not mean blood or legally related but those people you care for and love. Our lives were very complicated to those looking into it but actually cancer made our lives very simple. We loved each other. Love does not even seem like a strong enough word as I type it. We adored and cherished each other…we were each others souls counter parts.
June 9th, 2011
Justin sent to me in a text “I love you because I want too, I need you because I love you!”
He would tell me that we just have to keep moving forward, there was a light at the end of the tunnel…that it was the sun bouncing off his bald head! I said as long as it is not a train coming to run me over! I feel run over by that train at times. A light was coming but it was the light to take to Justin from this earth and to Heaven.
The first time he ever said he loved me he took my breath away, he scared me. We were talking about our conversations were so meaningful and in many ways intimate. By accident I said you can’t have intimacy without love. As soon as those words were out of my mouth immediately I wanted to stuff them back in. Once something is said like that you can’t just take it back. I say it was by accident I said that to him that evening but there are no accidents. It was meant to be said. He look the leap and asked me several times what I said… I wouldn’t repeat it. Justin looked at me and said he knew how he felt…that he was falling love with me. He took my breath away. He was willing to take such a huge leap…for me, for us! I couldn’t say it back…I was just took scared. He said it again to me…He loved me. I needed time to be sure of how I felt. The next day I told him that I had fallen in love with him too…that I loved him. Our worlds changed forever that day.
This was the day we had been dreading, look forward too, scared off but most of all hopeful that this day would be the beginning of the healing process for Justin and his body. The surgeries were done, now he had to just make it through chemo…which he would and did. I got to the house to find him dressed in his “quits” and Ironman shirt (quite a contradiction wouldn’t ya say) but still in bed. On the way home from work I was thinking he would be pumping himself up…motivating himself like he does with anything else in life but I was wrong. This was the beginning of the scary part. I remember sitting on the side of our bed and asking him what he was thinking. He said to me that his body was still hurting from the surgeries and tumors but he knew it was about to get worse before it got better. All I could think of to myself is it doesn’t matter how bad it gets we will walk together in this…he is not alone. Little did I know how bad it would actually get…worse then I ever allowed myself to imagine. He looked at me and said to me “you know this is going to get worse, right?” I could only shake my head. If I spoke I would cry. This day was also the first day he said to me that I did not deserve to have to be going through all of this. Nobody deserves to go through this. He did not deserve to get cancer but I would be damned if he was going to say that to me! I love him…everything about him, unconditionally. Yes, right now was not the happiest of circumstances but I wouldnt be with anywhere else but beside him.
We arrived at the oncology doctors office…the office where most of his treatments would be at. First we had to talk to the financial department…one word, EXPENSIVE! Even with insurance the amount of money it take to even be able to fight cancer is huge. Sitting beside him while they went over all the costs he kept looking at me. He asked me how am I going to afford this? I said…how can you not? Besides, he wasnt alone in this part either. Whatever the cost it wasnt too high for his life. He asked me what do people do that do not have insurance or cannot afford the thousands of dollars that insurance does not pay for? I shrugged, I didn’t know. Justin said I guess they go home and die. Sadly, I am sure in some cases that is true. So we get what we think will be the total for all of his treatments only to find out that what they gave us to only for the current calendar year…another couple of weeks. So it will be thousands of more dollars on top of what they just gave us. ONE shot alone that he got each cycle was $9,000 each time times for four cycles!
Next we go back to the chemo room. It is a smallish room with various chairs and recliners around it in a rectangle fashion. There is a TV on the wall and dozens of IV poles around the room. We were the only people there that morning. That is when we met Pam, the oncology nurse. She sat down with us and went down a huge list of side effects Justin could expect. Some where things we had known about..hair loss for one but we didn’t realize your fingernails fell off, that you would devolope taste in your mouth (lemon drops help this) or that your balance could be altered at times. Again he looked at me…it was all just overwhelming.
My Mom text messaged me and asked how things were going…I replied, expense and depressing. There was no other way to explain it.
That first day Pam explained to us that they were going to run his medication very slowly to watch for any reactions. His normal chemo schedule would be 5,2,1 which means in a cycle he would have 5 treatments one week, 2 the next and then 1 the last week. The cycles were 21 days long. The 5 consecutive days were long days…at least 8 hours each day. The first day he was there until 8 pm that night. I stayed until time to go to work, came home took care of kids and then went back to get him. Driving home he was talking to different family members telling them about the day and how he felt good. He was almost excited at how well it went…I was so proud of him. One treatment down…31 more to go.
While we were there during his first treatment there was a man getting his chemo too. He got beet red in the face, vomited and could not breathe. He was having a reaction. Justin and I just kept looking at each other. It was scary. You hate to think it but I was thankful it was not Justin who had the reaction. Further into his treatments he did have one though during another cycle.
Most of the other people around us had their hair. At the end of the day he asked Pam about it…everyone else was gone. She told us that most of the people who come in are just there for maintence…which means they are just trying to prolong their lives for as long as they can. We were again thankful for the type of cancer Justin had. It is times that I think back to those days now I feel so damn foolish. It didn’t matter that Justin completed all his treatments, allowed all that poison to flow into his body he would still die a little over 3 months later. We were so full of hope, it feels like a punch in the gut now. I feel stupid for having that foolish hope.
This is the face of an extremely brave person. He is smiling not knowing what is about to happen, how he is going to feel. Around his eyes are a little red and puffy from lack of sleep, worry and some tears. He/we were flat out scared! I can’t remember how many times I ran my finger on that place where his chin makes the divit below his mouth…how the hair on his face was rough to the touch. How my palm felt on his face when he would embrace me. I miss his touch dearly.
On my way back to work I stopped and got him some lemon drops and sent him this picture. We needed to laugh. He asked me what in the world was in my mouth and how did I get my eyes that big! I explained that I bought him some lemon drops but the baby wanted one too. I was 3 days from my water breaking at this point….
This evening we spent at my friends house baking cookies for a party we would go to the next evening. Another friend has invited us to a “Cookie and Beer” exchange party the following evening. Sounds fun but one problem I don’t really bake! Justin was still sore from his first surgery and from the tumors. By now he was trying so hard to not take pain medication unless it was necessary…always trying to just push through it like with anything he did with life. He had unbelieveable strength!
While we were baking and eating dinner the four of us were talking about life and the challenges we all face. My friends husband affectionately said we don’t find out the reason for things until we die. I blurted out..you know Justin has cancer, right?!? The husbands eyes grew huge and he wanted to climb into the open refrigerator he was standing in front of. We all laughed. You have to laugh….Justin laughed. Laughter is good medicine. As the evening went on I could tell Justin was uncomfortable physically and suggested we go. He said we would stay until I was ready. Why do I remember this??? Him waiting for me…because it just how he was. Selfless at heart.
That evening at home together would be the worst night he ever had pain wise. We went to bed at 11ish. Or I should say we both collapsed in bed. I was 13 days from delivering our son and Justin was 2 days from starting chemo. Justin tossed and turned a lot in his sleep…he had for a while. He would moan sometimes. He felt horrible most of the time. This time I did not wake to him moaning or turning, he was yelling out because of the pain. I asked if he wanted more medication, yes he said. Normally the dosage was 4 pills every 6 hours or as needed. He had taken 12 pills and it was doing nothing. Helpless is how I felt for him. He got into a warm bath and tried to find a comfortable position…there wasn’t one. He tried laying down again only to yell out “holy fuck”. I asked if he wanted to go to the hospital, he said no. That there was nothing they could do. I am not sure if he finally found a comfortable position, the medication caught up with him, he passed out or a combination.
I felt helpless. I remember wishing he could just fall asleep so he wouldn’t be hurting. Seeing him hurt like that scared me. He was in such constant pain everyday but this was so much more! I remember he was sleeping with his back towards me, not how he usually slept. He was a all over the bed snuggly sleeper. I curled up next to him and held him. He smelled of sweat from the pain but was resting. His breathing was relaxed, thank goodness. I wanted to take it all away from him. He did not deserve to be going through this, he was already having to fight to have an equal right in seeing his children he should not being having to fight for his life too! He was amazingly strong through out everything.
We went to the party that next evening. It was so nice to be out and accepted as we were, how we were. Thank you for that.