So I decided to start where I left off in hopes of helping others who are going through something in their life. I went on the Internet to find a picture of a mountain and this one was the only one that I found that looked so tall and massive that could correlate to what I am facing and have went through. So I will try to go over the last two years as accurately as I can. I left off telling you that I was getting ready to enroll in a clinical study at the National Cancer Institute in Maryland. By now it was May 2010 and I had been through I thought alot, little did I know what was going to be. I was looking up a mountain that seemed gargantuan. I could only get to the top by either going like a mad person or taking it one step at a time and in my life I'm a very impulsive person. I think that's one of my life lessons is on impulsiveness. I knew this wasn't one of those times though because I HAD to do this.
I by now was not working. I was a Dental Hygienist, a job I LOVED!! I loved helping others. I loved how at my job it meant something . Here I go again going off on a tangent. Well I wasn't working so things were tight financially. Our house that we lived in was choking us but we were making it and Mike couldn't just stop working to go with me especially for a month to do treatment. I luckily had John whose father was a Delta employee and he got us standby tickets for 50 bucks and if I got accepted NCI would pay for my airfare. They also would give 50.00 to go toward motel. Nothing toward food or transportation though. So here we go trekking up this mountain. We went for my preliminary visit in April and I had a tumor on my left shoulder that was kinda big. They accepted me and asked me to stay to resect the tumor on my shoulder to grow tumor infiltrating lymphocytes from. These are white blood cells that try to infiltrate the tumor and kill it, the problem is that the immune system doesn't want to let those cells kill the tumor because it doesn't recognize it as being bad. The whole clinical study was started by Dr. Rosenburg who I did get to meet and have him sign my journal. He wrote a book which i did read while there and he has been at the forefront of cancer research for many years. They resected the tumor and home I went after 4 days. I knew this wasn't going to be easy and the waiting period began.
May 2010 came and so did the phone call from NCI. They called to tell me that my cells had multiplied enough for me to come back and do the treatment. What did this mean exactly.. It meant a very hard battle. A battle that is not for the weak. A potential lethal battle. I was volunteering to be a lab rat. I was volunteering my cells for the good of research right.. I knew what I was doing and really what other choice did I have, there really wasn't any treatment options out there. So here I come Maryland, alone...
I boarded the plane with my bag, my pillow, and my pink blanket that went through the battle at U of M and IL2. I know it sounds funny.. me and my blankie right, but this blanket was my home and would be my home for the next month. I got to Maryland and the cherry blossom trees were in full bloom. The spring was so beautiful there. But I was gearing up for a battle, a steep climb up a really jagged mountain. I checked in and this place was state of the art people.... there is no hospital like this one.. and its all free. They gave me a private room and the fun would begin. Right... this was a vacation. I mean I had never flown prior to this trip but here I was getting ready for something I had no clue to. They scheduled my central line surg, then sched the chemo for 2 days followed by another chemo 2 more days then my cells... those beautiful cancer fighting cells paired with IL2...that wonderful drug from U of M. The days to come were pure HELL... the cytoxin and fludarbamine made my mouth raw, and my taste buds were gone. I literally felt like a fire breathing dragon. I threw up, I was tired, all waiting for that iv to ring infusion complete.. I got through the hard chemo and my hair came out in the span of a week. I went to get a wig, I now looked the part of a cancer patient. I had finally became neutropenic, which means that you have no immune system, and I had to be quarantined to that private room. Days... I couldn't leave without a mask on. The fluids that hung from my iv pole were too numerous to count. It was time though. I received 18 billion cells on June 4th 2010 the nurse at the time prayed on the bag that they would wipe out this cancer. The next week was crucial. IL2 again. The more the merrier. On June 7th I wasn't doing well. I really thought I was dying in that room, alone,, I prayed to god that night to not let me dye alone in Maryland. I was having a hard time seeing out of my Right eye peripherally. The doctors called it quits with IL2 and sent me to optometry and on that day I would get the news that the cancer had spread to my eye.. This shouldn't be happening right.. I just fought with everything and got cells that should be fighting this cancer. I will never forget those words from the eye doctor. There is really nothing we can do but inoculation. taking my eye out..I cried, more than I did when I first got diagnosed. I felt defeated. I felt helpless. And alone I was. My parents were to be coming to take me home and this is the news I had just gotten. Keep climbing Jolaina... Keep going...
God and I got really close, not that we wernt close before but having a "terminal" illness does something to a person, well it did for me. I hope that didn't sound bad, I have always had a close relationship with God and I knew he was there with me, I really prayed though for his strength. I had to know he was my pick axe holding me up on this cliff I was on. I needed him now. He never leaves us though. My WBC came back up and a week later I was released to go home and see if this was working. I knew that something was working because some of my tumors were getting smaller and the people that I had met while I was there were like going on 6, 8, some 9 years living with melanoma. That's really unheard of.
My parents drove that long trip home, what I didn't mention was while there my mother was going down the steps in the beautiful home they were staying in and broke both her ankles.. really... what more had to happen, so I was pushing her instead of her pushing me, that was not a good thing, and my Dad had to be there for both of us, but we made it home to Michigan. I would be returning to NCI in July to have my central line taken out and have scans again in Aug. The trip in July Mike had came with me and we had gotten on a plane and a woman was coughing horribly. I just knew I wasn't well enough and sure enough I came down with a horrible chest sinus infection. They also kept me and sent Mike home because they found a blood clot in my lung. They kept me and put me on blood thinners, they sent me home on them. I would return in Aug.
AUG 13th 2010, I had come to NCI alone, and financially again this was a really hard time. If it wasn't for my friends and family this whole thing wouldn't have happened. Cancer doesn't just affect your body, it affects your soul, your mind, your heart, your pocketbook, your whole life is affected by it, and not just you, but your whole family. I had gotten a hotel in a farther city and took the subway, the next day would be for scans, blood work, ampherisis, and then the final day would be meeting with Doctors. Aug 13th, that's the day my mountain became the hugest thing I have ever had to look at. That's the day they told me I had it in my brain. I would have to be taken off the trial and go home. I would have to look into other options now. They were sorry.. They and me. I again was alone,,,, crying,,, I knew what the stats were for brain mets. but it wasn't time to stop fighting. I came home and had to regroup. Another chapter to this story closed.
Sept 2010 came and steriotactic radiation came. My subcutaneous tumors were again growing and I was feeling again very fearful of death and really it was consuming my daily thoughts. I would journal about how we mus int take a day for granted. If only I could go back and not be so vain. If only I would have listened to my mom when she told me that tanning booth wasn't good for me. If only I would have went in and gotten that stupid mole taken off. IF ONLY... right. Tanning... oh I could go on and on about that one, but for now, tonight, I will concentrate on getting up to date. So through this whole thing my constant buddy someone who really knew what I was going through had been there for me, we had talked maybe once or twice a month, John, Christmas had come and we were both fighting with brain mets. He knew how I was feeling but we had both agreed how great it was that we were still here. I had gotten in a clinical trial at Henry Ford Hosp for a drug called ipilumibad, but now its called Yervoy. Back up here a little, I had started the study after my steriotactic so it was Oct 2010. by Dec, my last dose was to be given and the tumor on my upper left leg was excruciating. The pain was like nothing I could ever express in words, cancer pain is horrible. Its so yucky feeling, like a pain that never leaves, a constant. Nothing worked and by now the tumor was the size of a avocado and I wasn't going anywhere after my dose but to surgery. I told the Doctors that it had to come out. I couldn't sit, I couldn't walk, I couldn't do anything. They scheduled it that night and when I awoke, they explained that they couldn't close the gaping hole that the tumor left. I would have to pack it with gauze and hope that my body would heal around it. It looked like a serious gunshot.
I came home and was met with the job of packing up the house. Things had gotten tight and we had to move into a smaller more affordable home, God again provided a very cute warm cozy home for us. One thing I have learned through this whole thing is money is nice, but it means nothing, its hard without it, i know this but without your health nothing means anything. So we moved. My parents again came down and painted, and cleaned, and we moved. March came 2011 and another surgery was scheduled. This time on my chest under my pectorals muscle. I awoke and they said they had to take more and Physical Therapy would be needed. I needed to do this, and I knew I could without PT. So,,,Spring came and outside I went. I worked on my beautiful little yard, and worked, no PT for me. Nothing could take the scars away though.
After my surgery the Doctor at U of M decided that I needed to go back and do re induction of yervoy. Now it was FDA approved, which meant they needed to be paid. Which brings me to another rant...Insurance... I was not on medicare yet as I had to wait 2 years to get on it so I was on my husbands insurance, well it was already costing so much with the radiation, scans, and now 85k for 1 treatment of yervoy, they were going to fight. I had tried to get medicaid, but they wanted to put a spend down on me of 600 a month, which meant I had to pay for the first 600 before they would pay for anything, I only made 1000 a month. Really... Cancer I hate you...Fight on... Fight on...
I had gotten my Yervoy, but not without a huge fight and really almost a yr later the company went out of business bankrupt, but they paid it.
May of 2011 came and I will never forget this day. the 25th. I had gotten home from my second infusion and I was sitting on my couch looking outside, it was raining. and I was tired. The phone rang, it was a number I didn't recognize but answered, It was Johns wife. John passed.... I was crushed... I was so hurt inside. I cried for hours. He was my buddy.. my cancer buddy... no we were not super close friends, but he had what I had. He had the same timeline. We went through the same stuff. I couldn't believe it. He was doing so well, but this is melanoma. He had gotten a tumor in a month that had gotten in his intestine, he became septic and gone... I again felt that fear. The dying fear. I didn't want to dye, I know what stage 4 means. I know the stats.. But... I'm a fighter. I HATE it when people say... oh... so and so LOST their battle with cancer. SERIOUSLY PEOPLE... cancer patients don't LOSE... they win either way. They fight. They are fighters. No one knows what its like to have this disease and to say we lost just gives the cancer a one up. It never has a one up, and will never have one as far as I'm concerned. I went to his funeral, and it was hard. I cried. another alone trip for me. I have been alone through this thing alot it seems.. but not really..
October 2011, the tumors are again acting up and I will have to have 3 more taken out and a suspicious one on my right foot, bottom. Nov sched surg. The three were chest wall, right arm under first wide excision, and gluteous area which is the size of a orange. The foot thing was benign, but the others were melanoma. Then more steriotactic radiation as 2 more brain mets found. This was December 2011. My eye was also active so 4 treatments of high dose radiation was also required. I had so wanted for this to slow down. When is my break.
Feb 2012 I had been having many visual changes due to my eye and brain tumors. I couldn't do simple things like walking without the flasher. Now when I say flasher I mean a circle that was very pretty and stained glass looking. it was from my brain tumor. I really wanted my old life back. I had gained alot of weight from the steroid decadron I was on. I wanted to workout, I had to lose some of this weight. I felt like a ugly woman. I had so many scars. I just kept climbing. March - July not too much was happening, my body was fighting. I was fighting. August my MRI showed my brain tumor was again getting larger but he wanted to wait because the next coarse of action was crainiotomy. Can I just say... brain surg.. really.. haven't I been through enough? I kept being positive, but things were getting really hard. I belong to a group on face book of other melanoma patients and people were getting sick, dying,, this was all happening again. I did not have support after John left, and I desperately needed something.. someone.. I still haven't found that someone, but the group gives me somewhat council. At the same time its hard, its really hard to see others fighting this same thing you have and see them pass. I don't want to die, I also know what pain it is when you do. Was it a good thing that I keep checking this page? I have to, I have it, It NEVER leaves me. So on to today. I am stable... I cannot believe it, but I am, I have to say it is always here though. My life has changed so much. I want my old life back but I can say Cancer has given me the chance to forgive genuinely, to love completely, to not take one minute, day, week, month, season for granted. I know it has taken from me so much too. I know that friends who couldn't deal with it aren't there anymore. I know that the job I had doing what I LOVED is no longer. I know that I'm stuck because of this stupid insurance thing. I know that financially its hard and we have had to really cut back, on top of that my husband got unemployed in Nov so that's hard, its all hard. I'm doing this blog to let others know that although cancer takes so much from you, it also gives you things. I wouldn't have had the relationship with my children the way I do today. I wouldn't have loved so deeply. I wouldn't have saw the beauty in a hummingbird. I wouldn't have helped others the way I am now.
I was totally consumed with looking good before cancer. Tanning was important because I am fair skinned, and people think its ugly to be so "white". I tanned 2- 3x a week, I laid out in the summer. I thought I had to have that base tan so I wouldn't burn in the summer. These are all lies. A tan is really dead skin cells getting brown, and trying to repopulate the good cells. Over and over we place our skin under stress with a tan, our bodies are changing the DNA repopulating and making a perfect equation for melanoma. When cells dye our body tries to make new cells at a quicker rate, causing some to populate quicker than others, which can turn into melanoma. If I can help others to recognize this and help stop someone from going through what I have gone through that maybe is my new purpose. I have to have a purpose. I cannot be going through all this for nothing. This is why I am blogging. I cant promise all my blogs are going to be butterflies and flowers. I am mad, I am hurt, I am sick of being sick. I know I am stable now. Melanoma is really sneaky though, and I know I am claiming and am standing strong but like I said earlier, its always there. Sometimes I have to quiet my brain from it and sometimes I want to scream. I hope this blog will help someone and also help me to get this all out. Thanks for reading.... Ill post more soon...
