Friday, August 27, 2010

Love remains

Patrick’s eye strain headaches have gotten progressively worse over the last few weeks, so his doctors set him up to have a MRI. He went to his oncologist in Columbia to get the results, and they were very concerned. They saw something behind his eye. Dr. Smith felt that it was likely tumor, but that it could also be scar tissue from his meningitis. He wanted us to go to Houston and have his doctor’s at MD Anderson look at it. We started making the appointments set up, but took us two weeks to get things set up. His head and neck surgeon had been on vacation, and in spite of Patrick sending emails for over a week, they hadn’t gotten him an appointment. I called Patrick at work, and asked if he had heard back about his appointment. Patrick had been super busy at work, and he cut me off pretty abruptly and said “I haven’t heard back, and I don’t have time to deal with it today. I am super swamped here at work.” to which I replied “I’ll handle it.” I looked up the toll-free number for the Head and Neck Center, and hit “0” until I got a human on the phone. The woman that answered said “Let me transfer you to his scheduler.” I stopped her quickly and said “No thank you. My husband has been emailing her for a week, and I am not going to leave her any more messages. Go get her.” I held and held and held, and finally a woman answered the phone. I told her that Patrick needed an appointment for the 26th. She said “Well Dr. Kupferman has been out of town and he doesn’t have anything available that day. The 26th is his first day back in two weeks” to which I replied “Look, we are not coming across town here. We have 1,000 trip, a two year old, and we both work full time. He only has clinic on Thursday, so WORK US IN!” “Well mam, I am sorry.” I lowered my voice and said “If you can’t help me, then put someone on the phone who can. There is reason in all things, and this is crazy.” “Please hold.” I waited some more and the next thing I heard was “How is 11:00?” I smiled with satisfaction of my cross country smack-down. I worked very hard on trying to get a donated plane ticket for Patrick (sadly it didn’t work out), but we got everything lined up for him to come out. I had not planned on coming out with him to start with. I have missed so much work in the short time I have been at my job, and I expected this trip to be a fly in and fly out kind of a thing. I would have never expected what was about to come.

Patrick was to fly out on Tuesday, and as I was helping him get his things together, he said that he really wished I could be there with him. “I don’t know what I am going to do if they give me bad news.” I had this huge wave of “Oh my gosh! I am such a horrible person. How could I even think to not go out there with him? What if he gets bad news?” I asked him if he wanted me to come. “You don’t have a ticket or anything, and you haven’t gotten things arranged to come out.” I said “That isn’t what I asked you. Do you want me to come?” He got a little choked up, and said that he did. On the way to work, I called my mom and asked her if she would drive out to Houston with me. I didn’t even look at plane tickets. She said she would do whatever I needed her to. I got to the office and tore in like a tornado getting things ready to be out for a few days. I got a call from Patrick that he couldn’t get his plane ticket information to print at home, so I printed it and ran home for “lunch.” I told him my plan to drive out there. He said “My appointments start on Thursday. You can’t get out there by then if you drive.” “Oh yea of little faith. It is 18 hours, and that would put me there before your first appointment. It will be hard driving that much in one day, but I’m going to do it.” He gave in. You would think after being together for nearly 10 years he would know better than to think I can be talked out of something. “You said you needed me there, and that is where I will be.”

My step-dad got word that I was going to drive out there, and he called me choking back tears. “Honey, please let me buy you a plane ticket. I will be worried sick if you drive out there, and this is one thing that I can do for you. I want to help, and right now this is the only way I know how. If you really want to drive out there, I’ll support you. I don’t want to make things more stressful, but I would really love to get your ticket. If you want your mom to go out there with you, I’ll buy her one too.” I told him I would rather Mom stay home with Cameron, and I had made that trip before alone. Before I agreed, I looked online and found a reasonably priced ticket, took Mr. Larry up on his offer, and started packing.

The flight to Texas on Wednesday was a all day affair. I had to be at the Florence airport by 4:30am, then 3 hour lay over in Charlotte, and then 2 more in New Orleans not counting air time. I got to the airport, picked up a rental (which is school bus yellow), and drove to the hotel. Patrick was in bed when I got there with a heating pad on his eye. He has headaches non stop, and the warmth seems to help. I crawled into the cloud of a king sized bed and spent most of the rest of the day snoozing. His first appointment was at 7:15am on Thursday, and his last one wasn’t over until nearly midnight (He had an MRI that didn't even start until 10:00). I knew that we were in for a long day.

His blood work started at 7:15. They drew it up, and we went and got coffee. We sat around and waited to meet with Dr. Kim who is a chemo specialist. He said that he would be working with Patrick’s team to decide what the best thing would be “if” what looked abnormal was in fact cancer. It was a pretty uneventful meeting, and we were off to more waiting for his appointment with Dr. Kupferman.

He confirmed my darkest fear. What they saw was indeed tumor, and he didn’t know if it was operable. He said that because of the location, Dr. Levine (Patrick’s neurosurgeon) would be the person who would need to make the real decisions from this point. He did say “Don’t give up hope.” That is not something you want to hear from a world renowned doctor. I ran to the store and grabbed a few things while Patrick rested. We watched a little Law and Order, and napped until we had to head back to the hospital for his MRI. We got done around midnight, came back to the hotel and crashed.

Friday is a day that will live in infamy in my heart. At 8:30 he had his appointment with Dr. Levine. He is a great guy, and he and his wife recently had a baby. He and Patrick are about the same age, and we have both connected well with him. When we sat down in the exam room, Patrick sat in one chair over on one wall, and I sat catty cornered to him. When Dr. Levine came in he said that “I don’t know how to tell you this. Patrick, why don’t you come over here and sit by Erin. This is going to be hard to say, and I think I might cry. You all are my peers, and this breaks my heart.” I got a wash of hot fear over me, and he said, “Your cancer has come back, and it is very aggressive. Let me show you the last few sets of films.” He pulled up the last three MRIs Patrick has had. The post operative scan (which keep in mind was only a few months ago) looked fine. The one he had when he had meningitis had a small shadow, but nothing that just jumped off the page. The scan from about 5 weeks ago showed some brightness behind his eye, but again nothing crazy. Then there was the MRI he had had the night before. There were three distinct masses. One on either side of his brain and one behind his eye. There was also some abnormal blurs in between the two hemispheres of his brain. “Surgically there is nothing that we can do, and chemo is not very effective in this location and with this tumor type. I want you to talk with some other doctors, but I am just so sorry. I don’t know how to say this, but six months from now, nine months from now...I just don’t know.”

My ears started ringing, and my lip began to tremble. The tremble turned into a quake and then an eruption of tears. I feel over onto Patrick’s chest and wept. Dr. Lavine and Roxanne (I don’t know her last name which is a shame. She has been on Patrick’s team since the beginning, but every time I hear her name I just cant help but sing, and her last name gets lost in song) both began to cry, and then there was a deafening silence in the room. “I want you to talk with a few more people, but as hard as this is to say, you will need to try and think practically too. You need to make sure your will is up to date, you know where life insurance policies are ....” I didn’t hear much more after that. All I could hear was my heart pounding in my ears. I just looked down at my hand in Patrick’s and cried. We left the exam room, and I don’t really remember walking to the car. Patrick asked me if I could drive. I pulled it together long enough to get us the 2 miles back to the hotel. We came upstairs and Patrick took some pain meds. I asked him if he needed anything. and he said "No." I quietly said, “I need to get some air. Are you going to be ok here alone.” He assured me he would be, and so I went downstairs by the outdoor pool. There wasn’t anyone there, and part of me was temped to strip down and get in. Part of me felt that the cool blue water might wash away some of the pain in my heart. I resisted the urge, and sat by the pool and wept. Rage, fear, helplessness, and loneliness poured out of my face in huge rivers. My heart was breaking, and it was nearly audible. All I could think of was Cameron. I could see her just as clear as if she was standing right there. I could see her the morning before we left putting a Dora band aid on Patrick’s head and saying “Feel better?” I could hear her “Read Daddy READ!” Patrick is a good man, and a great husband, but Patrick is a wonderful father, and those are so hard to come by.

We are going to be meeting with some other doctors before we come home, and I hope beyond hope that they will give us a plan. We are fighters, and we are willing to do whatever it takes.

When we got back to the hotel we made some very hard phone calls. We would have both much preferred to tell our families this in person, but we don’t know how much longer we will be out here, and we wanted them to be able to start praying. It wasn’t until then that Patrick truly let go. He called his Mom and Dad and all four of us cried. No matter if you are 6 or 36 or 106, you will always be your momma’s baby. Patrick called his brother and a few friends, and I called my family. Everyone said the same thing. “Oh my God honey I am so sorry. I wish there was something I could do.” There is...pray.

I never dreamed that I would be at this place, much less at 28. The place where I am even having to contemplate my husband dying. Being a single mother and widow and not even 30. I feel lost and afraid. I don’t feel hopeless, but I feel completely helpless. Now is the time to hold on to my little family with love and strength. That is what I am going to do.

I read this and it gave me some comfort.

1 Corinthians 13:13 And now these three remain: faith, hope and love, but the greatest of these is love.

As I sit in this hotel room looking at Patrick asleep in the bed, those are the three things that remain. Those are the three things that I am trying to fill myself with. Those are the three things I am and will hold on to for dear life, and no matter what, those three things will remain. I’m holding onto to the faith that miracles happen, and we will pray constantly for one. I am holding on to the hope that next week will bring us a plan that will turn our situation around. And it is true, the greatest of these is love. Love remains. If the worst does come to worse, his love remains. She remains with big girl panties and Dora band aids.


  1. We've never met. I stumbled upon your blog several months ago while checking out a friends blog. My heart breaks and I am praying.
    Maybe(probably) I should have asked you first, but - I put your blog link up on my Facebook status - asking FB friends to pray for you guys. If you want me to remove it - I will - but I did feel compelled to have others start praying for you, too.

  2. Hello Kristi,
    You know I have never been on a blog muchless read or wrote on one. Thank for the intoduction Pat! Kristi, I'm one of Patricks old FFA friend/ state officers. I had no idea. I've read your entire blog, I think I just ruined my keyboard from my salt drops. Thanks Patrick!
    Simply put I love old patrick so I guess therefore i love you too! :) Please give the boy a big ol sloppy kiss for me. I've prayed already and we will continue. Listen, I know people have said it a lot, but I mean it... if you need anything, please ask me! I owe quite a bit to Patrick. I fly a lot with "a few" sky miles. If an airplane trip or something else helps.... PLEASE let me know.
    Love you guys!
    Thomas Dismukes

  3. Wow!!
    Praying for all of you!! Will be posting on our MILLGROVE FARMS fan page and many others will as well!! God bless you all....!!

  4. My love and prayers are with you and your family. I am so blessed to know your family. All of you have brought such joy to me and I hope I can return the same to you in your time of need. Love Mo.

  5. Erin - Thank you for sharing this with me. I will certainly be praying for Patrick, Cameron and You.
    I feel your strength as you wrote the last paragraph. That was for me, too. Faith, hope and love has more meaning because you wrote this. I need it, too. We will be praying....
    Julie West

  6. Erin, Patrick, Cameron- you all have been added to our prayer chain in Orangeburg and our hearts!! My husband (age 32) was diagnosed with tongue cancer- we understand the fear, the emotional havoc, and the pain- we also know the power of prayer, hope, faith and love!!
    We wear the LiveStrong bracelets- as a constant postive reminder to Live-Strong!! Lance Armstrong was given a 2% chance to win the battle- and he proved to do so!! We are praying for perfect healing, renewed cells, the power of God to intercede, and your faith to remain constant!!
    love and prayers

  7. Erin:

    You don't know me: I am a co-worker of one of your friends, Kelly Hall. I live in Columbia too... I have spent the last two days reading over your posts and my heart breaks for you. Like you, I have been married for about 6 years, and I have a toddler at home... and I am married to a wonderful husband and father. Though my husband is not ill, I understand a little of what you are going through right now: my mother-in-law passed in December after a 2 1/2 year battle with terminal brain cancer. Originally, she was given 6 months to a year, but sometimes small miracles happen and she beat the odds to make it almost three years. When the cancer came back that second time, she learned the news the week that my husband and I found out we were pregnant. Her goal was to see the birth of her first grandchild, and she was right there at the hospital when Lily came into this world. Within two months the tumor had grown so large that the doctors would not let her see the MRI, and she passed on three weeks after that.

    A mother-in-law is not a husband, but I know what it is like to go through the constant, emotional up and downs that come with caring for a loved one who is battling cancer. My husband and I lived one neighborhood over from his mother and since her husband worked out of town, we were often her main caregivers. I know what it is like to sit in hospital waiting rooms, to feel impotent as your loved one suffers through pain and anger, and to deal with the agonizing reality of possible impending death. This is not an easy path...

    Your blog has brought me to tears several times since I started reading it and I just wanted to let you know that even though I am a stranger, my thoughts are with you and your family, and I am sending out hopeful thoughts that your husband will be blessed with the miracle of time.

  8. erin, i'm rarely on facebook but was just there and found your blog and realized what you and your family have been going through.

    i think you are incredibly brave, and have always been so strong and capable. i realize my tiny little blog comment doesn't mean much, but know that an old friend from converse is thinking of you and will be sending you and patrick all the well-wishes in the world.