You cannot stay on the summit forever; you have to come down again. So why bother in the first place ? Just this: What is above knows what is below, but what is below does not know what is above. One climbs, one sees. One descends, one sees no longer, but one has seen. There is an art of conducting oneself in the lower regions by the memory of what one saw higher up. When one can no longer see, one can at least still know."
-- Rene Daumal This quote is very good, I had to read it a few times to really capture its meaning in full but thought how well it summed up my feeling about my experiences over the past 3 years. Since I am blogging I have been thinking a lot about what I have wanted to share with others about the things I have been through and where I am going. Cancer is not something anyone wants to hear that they have. It changes your WHOLE life. It is not just a illness but it’s a lifestyle. Its cloud of loneliness that seems to infiltrate every pore of your being. Cancer. I have always said it cannot define who a person is, but it does. It defines every aspect of the persons life so it does define who you are. In the above quote its basically saying after you have conquered the mountain you will never forget it. You don’t know what’s going to happen before you get to the top, but you know what you went through getting to that top. I want so badly to say I have hit the summit of melanoma, but I firmly believe that only the true angels who have gotten their wings are the ones who have crossed the summit of melanoma.
I want to expound a little about the cloud of loneliness. By loneliness I don’t necessarily mean that everyone has left you and your fighting this all by yourself. I mostly mean that there really are not many who really know what your facing. There just aren’t people who can relate to what your really going through. And when you have hit the part of brain tumors, well, that’s just another level of loneliness. So here I am going to touch a little on this subject so that those of you who may not know what a person with a brain tumor may be going through.
My brain tumors are in different places. I have one in my occipital lobe, which is your visual cortex, and I have 2 in my temporal lobe, which controls your moods mostly, but also behaviors. I guess that explains my behavior the past 2 years at least.. Joke… Well, I don’t have many side effects from the temporal lobe tumors, just the occipital one. I HATE it.. that’s even a understatement. It has effected so much. I have so many issues from it, and, they will never go away. They told me that if I were to have a craniotomy there I would be blind in the center focal area in both eyes. This area is the main area that I see visual changes in. Visual changes like the flashing colored circle which comes on when its active. Now , its stable but upon exertion of any type like exercise, walking to fast, running, riding my bike, cleaning the house to vigorously, vacuuming, or just because sometimes I will get a circle area that looks like a oil spill in my eye, not black, but the colors and everything meld together. I hate it. Recently, I have been seeing this thing only at night now when I close my eyes to sleep, its totally different, it looks like a rattlesnake tail, how it shakes, but its this pulsating light that pulsates like a rattlesnake. I hate that too. Its like its saying…. HA HA… I’m still here, you will never be the same. Its really annoying. I feel that its important also to tell you that I “look” like I am just fine, and I’m thankful for this, but at the same time those people who don’t know why I have that handicap placard look at me like I’m trying to cheat the system. I wish I was.
Going back to that saying in the beginning, One climbs, One sees. I love that. I am seeing all sorts of things, not brain tumor wise though. I am seeing how I must make this into a good thing. I must be able to turn this around, but if you know my life story I do feel cheated. Before I got Cancer, I was just embarking on my career. I had went back to school later in life, after I had gotten a divorce and I knew I couldn’t make it as a single parent on one income( I know differently now), I had pursued my dream as being a Dental Hygienist. I worked in the Dental Field for almost 15 years before I had gotten my Degree in Hygiene. I was a Assistant and I always wanted to be a Dentist but chose Dental Hygiene because at my age, going to Dental School was out of reach. I LOVED it…I Loved how people actually asked me questions and I could answer them with all my knowledge. I could make recommendations to them on the best coarse of action and they would listen to me because I knew what I was talking about. I felt like I was contributing to society. I was helping others. I know that hopefully someday I will be able to do that again but as of right now with the tumor in my Right eye and the visual changes with my brain I could not easily scale or do a good job, nor would I want to put someone in danger. You say, well, you could work doing something else right…wrong. The slipknot I have tethering me is called insurance. I am in a world where I cannot move up or down. I HAVE to have insurance so that those MRI’s and cat scans are covered. The only way to have insurance is to stay on Disability, which means that I cannot make more than 900 extra dollars a month. I then think about life. What does one do when they cant move? They eventually accept. This is where I am. It took awhile to get used to this. I mean I would have never thought that all my hard work to get a degree would be trumped by Cancer. I am finding my new normal. I am finding acceptance with what I have been given. I just need to find what is pushing me to keep scaling that mountain. I will leave tonight with this saying because it is another that means so much when I think about what has happened and causes me to try to find my purpose in this life. Be well. I will write more soon…J
Robert Macfarlane, Mountains of the Mind: Adventures in Reaching the Summit
Wednesday, February 27, 2013
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...
Tuesday, February 26, 2013
So I decided to start blogging. One step in front of the other I guess. Where to begin. It all started back in 2009 well 2008 when I noticed a mole on my upper left arm looking kinda funny it was oddly shaped and dark brown and light brown, something inside me told me it wasn't right but come on... its a mole... a MOLE. I let that mole go for another year and it started looking worse. It wouldn't moisturize with lotion and started to look really red and scabby. I went to my local Dr and she looked at it and basically said it wasn't anything to be worried about but she would do a biopsy and let me know. The next evening around 7:00 I got that call. The Dr telling me it was melanoma. I had no idea what that was. I should have with my degree but I didn't. I knew that it was skin cancer but it was just skin cancer right.. The Dr then told me to not be too worried but that I would have to have a wide excision and a lymph node biopsy done to see if it has spread. Not a big deal right...Then I decided to do what everyone does go on the Internet. I stayed up all night long reading about this thing I had and then the fear began. I had read that this just wasn't SKIN cancer. It was something that metastasizes and loves to go to brain, lungs, and liver. I saw horrible pictures of tumors all over people. I saw pictures that really to this day will not leave my memory. I saw people on YouTube who has now left us which makes this thing more scary. Note.... do not look up things unless you know for sure you can deal with it. I tried to forget all those things and I went to my surgeon who assured me that this DOES NOT spread in the blood stream.. and good thing it wasn't in my lymph node but I was left with a HUGE scar on my arm. Total shark bite. Life was good again. There was no way the surgeon said it. Even though the Internet told me that it can. But... it was just skin cancer right.....
6 months later...6 MONTHS>>>>>I had noticed a large lump in my abdomen. It wasn't there before and it started making me worried. I went back to the Dr and she felt it and said it was probably a lypoma.. a fatty tumor. Something inside of me took me back to those Internet pictures and I knew it wasn't a fatty tumor. She ordered a cat scan and I begged the tech to tell me what he saw. He told me he couldn't and then later came in and said it wasn't a fatty tumor but I couldn't tell anyone that he told me that. I decided to NOT go back to that surgeon who told me there was no way it could spread and I went to a well know surgeon who I had seen before. I got in pretty quickly and scheduled a removal. I was put out and when I woke up the surgeon was standing in front of me very somber. " Mrs. Walling.... I'm so sorry to tell you it was melanoma, it was the bluest thing I have ever seen. We need to get you to a oncologist and I would recommend someone close to home but you should go to University of Michigan too. They know there stuff there." It was November 2009. December 2009 I had made a appointment with a local oncologist who was well known and my Brother and Sister in Law came over to take me. I just know that I knew it was ST 3... right... I mean really 6 months ago I was St 1. St 3 was still not good but there was no way it could be a ST 4. So... I sucked it up and went to the oncologist. That wait was excruciating. But...I had already done my research right.. So we waited. Me and my Sister in Law Renee. He came in and sat down. He looked at me and said those words. I'm sorry Mrs. Walling... but you have ST4 Metastatic Melanoma. That lump grew so large in my throat that I could barely breath. SERIOUSLY....I begged him to tell me how much time I had because I had done the research. I knew all to well what this meant. I knew the statistics. He began to draw this line... a time line...and the rest was history.. I couldn't stop crying. Everyone was crying. The helplessness I felt in that moment will never leave my memory. I wanted to know what I could do. What treatment options were there. NOTHING>> clinical studies was all that was offered to me and he told me that those weren't promising. I left that visit broken. I came home and told my husband and for the next 3 days straight there was crying. It was before Christmas and I really felt helpless. There was nothing for me. No Chemo.. No medicine. No nothing. I began journaling. I look back at those notes and it was sad. Things like I just want to be here for my kids... I just want to see my daughter graduate.. I just want to be there for my son when he starts driving. I wanted to LIVE... and I was prepared to do what it took.
I decided to say forget you Local Oncologist... This deserves the best...I booked my appointment with the University of Michigan a week later. I have to insert here that I was working at the time and I had to begin to take some time off and I will never forget my employer getting a little mad at me because I was depressed and not looking to far into the future. I will never forget the day I came in and him saying to me..."Come on Jolaina,,, snap out of it... its just skin cancer...". JUST>>>>> really. it made me more determined to fight. I went to my appointment at U of M and they booked me directly after Christmas to start a treatment called IL2. It would be hard and I would have to stay in the Hospital for 2 weeks, then home then another round. I will never forget that. It was hard. To say it was like a bad flu was nothing compared to what it did to me. The worst part was something called riggers. I shook uncontrollably and I couldn't get warm. I hated it. I did it though and with the help of my great team there we got through. If you know me you would know I talk. I will talk to anyone and the day I was getting ready for my next treatment I noticed a guy across from me in intake he was talking about how it was in his lungs... I couldn't help but listen. He was with his beautiful wife and they looked my age. I knew that there were only going to be 3 of us with melanoma going in for this treatment and I knew he was one of them. I tried to get their attention and I did..I told them my name and he told me his and the friendship began. Finally... someone who knew what I was going through. His name was John. He was 39. I was37. One of the days I was in the Hospital and feeling OK I would walk. I found his room and would go in and chat for a sec. We exchanged phone numbers and would talk frequently. In March my appointment to go back and see if the IL2 had worked came up and no shocker.. no improvement. What next.....
My great Dr. told me of a clinical study at the National Cancer Institute in Maryland. I live in Michigan and it would be hard to go back and forth but if I got accepted they would pay for everything. It would mean I would need to stop working and apply for Disability. It would change everything. I needed to try.. I HAD to do this. So... the next chapter. I am going to stop here for now. I will finish tomorrow. Its alot that I have been through and to rehash all this is a little hard. I have been through alot. I hate melanoma and If I can help someone with my experience that is what I'm going to do. This is why we are here right. To love and help others. Maybe this was my call. I don't know but in the midst of being bored to tears now and my life story I should get it out there. I will pick it up again tomorrow. I will call it Looking at at that Mountain. Till tomorrow...