Written By: Leigh Reese
Kidney Cancer Warriors Support Group Member
aka allenpa on KCW/Chat and KCA forums
Allen always says "Ya Gotta Do What Ya Gotta Do" - that was the original name of the Kidney Cancer Warriors Support Group. It's now our motto!
Hello. This is Allen's kidney cancer roller coaster journey as told by his wife, Leigh. I tried to get Allen to write his journey; but, he really is a man of few words and prefers I write his story for him. So, yes, most of the time, I do speak for Allen because that's how he wants it. In telling his story, I will be including part of my story as well. The way we see it, when we became married, we became one. It's very difficult to separate the two. To symbolize our unity we used sand in our wedding. We each had seperate glasses of sand and poured the contents of our individual glasses into one glass. Once his sand and my sand were poured together into one glass, there was no way to separate the sand back to their original glasses. That is also true with the two of us. Once we united together as husband and wife, we are forever and always "one." There is no way to seperate completely the "one" that we have become. So, in truth, this is "our" kidney cancer roller coaster journey. Allen was diagnosed with renal cell carcinoma on October 5, 2006; but first, a little history of Allen's life right before being diagnosed.
This was not Allen's first encounter with the cancer journey. His first wife, Melody, of 16 years, was diagnosed with Stage IV ovarian cancer in December 2001 and passed away in September 2004 at the age of 41. Their son, Jake, had just turned 13 years old when she was diagnosed. He turned 16 right after she passed away. From the point of her diagnosis, life as they knew it, had turned completely upside down. Allen will tell you he was very fortunate and blessed to have Mel's family (her mom and sister's) helping him. They were here most of the time, taking Mel to her appointments, caring for her, helping her around the house, etc. This gave Allen the opportunity to at least attempt to keep life pretty normal as possible for his young teenage son. It was a very difficult time in his life. For Allen, the worst part of that experience was the side effects her chemo caused her. He hated watching her go through all the suffering. She experienced many including - throwing up, diarrhea, hair loss, weight loss, fatigue, etc. Through it all, she always tried to smile and look on the bright side! In Allen's words, "She was amazing!" Never in a million years did he think he'd be following her footsteps being diagnosed only two years after she had passed away and being told that he'd been walking around with cancer the entire time she'd been diagnosed, treated, and passed away. Before she passed away, she made Allen promise to move on and live his life! It was such a huge loss for Allen. For awhile, it felt to him like he was just going through the motions. After she was gone, the house was so empty. He missed her huge smile the most. He says it filled the house with sunshine. He had lost the woman with whom he thought he'd spend the rest of his life. It all seemed so unbelievable. She was so young and had so much to live for! Now it was time for Allen to learn to live life without her. Allen says often that had it not been for his relationship with God, he would not have been able to get through the ordeal of Mel's illness and death. He knew that the folks at his church tried to understand and tried to be helpful; but he had never felt so lost and lonely in his entire life!
In January 2005, Allen joined an online Christian web-site. Not a dating service but a site where you can chat with other Christians, post on the forums, ask for prayer, etc. In this chat room, Allen found folks, including me, who were willing to pray for him and and his son and the ordeal they were going through. The Christian site was a great place for him. He's not a very out-going kind of guy. On the site, he could meet folks without actually meeting them. He never intended on meeting any of them in person; but, it was great knowing there were folks out there praying for him, for his son, and their loss. After Allen joined the Christian chat room, he and I met online. I had joined the prior November. Mostly, we talked about what he'd experienced the previous year with Melody, how his son was doing, and how he was doing. I prayed for him a lot in private chat. Allen lived in Pennsylvania and, during that time, I was living in El Paso, Texas, working in New Mexico. We talked strictly online for a month. Then Allen started calling me on the phone. I would pray for him and Jake on the phone and we just laughed and carried on for hours sometimes talking about anything and everything. Allen nor I had joined this Christian site to meet someone for dating purposes. Neither of us were actively looking for a relationship. In fact, neither one of us had plans to ever meet anyone from the site or plans to pursue a relationship with anyone. Allen didn't think he even wanted to date much less re-marry and I had decided long ago that I was never getting married. Although Melody had told Allen to move on with his life and to find someone else, Allen had no plans of ever doing so.
In April 2005, Allen and I met in Albuquerque, NM. We spent a long weekend getting to know one another better. It was a really awesome vacation for both of us. (I think he had fun even if I did beat him in air hockey!) We rode the Sandia Peak Trolley, ate at some great restaurants, went to the zoo, the aquarium and botanical gardens, among other places. For my birthday, Allen was even going to take me up in a hot air balloon ride (one of my bucket list items) even though it's not a concept he likes. However, on that day, they were not taking anyone up due to winds. So I missed out on my hot air balloon ride. Maybe one of these days I'll get to go on my Hot Air Balloon ride; but if not, I was just excited that he actually considered taking me up and was going to do it! That was a gift in and of itself! One I will always cherish!
After our first date in April, we both knew that there was more to our relationship than friendship. It was a "God" thing - a special connection we shared. Never in a million years would either one of us date someone we met online - at least, neither one of us would have expected it. Definitely "out of character" for both of us. To make things even that much more "out of character" for the two of us, we were married October 5, 2005, in Hawaii. Only nine months after we met online, we were married! Talk about surprising my family (who never thought I was going to get married), surprising his family (who thought it was far too soon for him to remarry), and everyone else who knew either of us! We had a short, whirl-wind, long-distance, dating relationship and then we were married! It was a perfect dream wedding ~ barefoot on the beach in Hawaii. Neither of us ever had any doubts. We just knew that we knew. The day I married Allen was truly the happiest day of my life. I was ~ and still am ~ on Cloud 9! It's been the most awesome decision I've ever made in my entire life - second only to accepting Christ in my life. Actually, there wasn't even a decision to be made. You know, some things you just do because you know it's what you're supposed to do. Marrying Allen was one of those things for me! Allen is not perfect, I am definitely not perfect, our marriage is not perfect ... but we are perfect together because God brought us together. We both believe that with all our hearts. After being single for 42 years and never wanting to get married, it was amazing to me how easy it was adjusting to married life. I love being married to Allen. We are very much attached at the hip. We do everything together and he and I both like it that way. I can't tell you how many times someone has told us that God knew Allen needed me in his life. That's true, I'm convinced of it; but I equally needed Allen in my life. He has enriched my life far more than anyone can imagine. I never knew I could love someone so completely. I never knew I could spend my every waking moment with just one person and not go completely bonkers (as I am a person who enjoys my alone time). I never knew how much I was missing as a single person, loving someone so deeply and being loved in return. It is something I will never quite be able to express. I loved being single ... I love being married even more ... and I never want to be without Allen! He's my very best friend, my soul mate, my life, my everything! Our marriage truly is a Gift from God for both of us! I wish I could be the perfect wife for Allen, but being perfect is not something I can obtain. I did want to make Allen happier than he'd ever been in his entire life. He once told me he's always been kind of sad - always! But our dealing with cancer (and him dealing with it for a second time), it's been really hard for him to really be happy! But God didn't promise us "happy" ~ He promised us peace! So if my sweet precious husband has peace, then I'm satisfied. One thing I have accomplished that makes me feel somewhat successful as a wife in this very difficult situation. Allen tells me I make him feel more loved than he's ever felt by anyone! Okay, so if I can't make him happier than he's ever been, at least I can make him feel more loved than he's ever felt. He knows that he is my priority, second only to my relationship with God. And he knows that I love him with every fiber of my being! I would do anything for him! Anything!
Our first year of marriage was a year of adjusting for all of us. I had always been single and had lived my entire adult life in Texas. Now, I was living in the North East away from all my friends and family, and was a wife and a step-mom. Allen and Jake both had adjustments to get used to as well. We all know that men are so much easier to live with than women! Then thee was the situation of my health ~ Allen and I had decided that I would take the first year of our marriage off from work to see how my lungs handled the weather here in Pennsylvania. I have severe asthma and had been having difficulty in my last couple of jobs due to getting sick constantly. I'd go to work and they'd tell me I was too sick to be working and would send me home. So from October 2005 to October 2006, Allen worked, Jake was still in high school but never home, and I stayed at home adjusting to being a house wife, enjoying every minute of it! The hardest part of being married to Allen has been his 17 year old son. It took Jake and I a long time adjusting to one another because he was old enough when Allen and I got married, that he didn't need another authority figure in his life. I wanted to be his friend but it was hard to be a friend to someone who was literally never home. It just took us a lot longer to get to know one another than I would have liked; but for the most part, it's been very easy living with him. He's laid back like his dad. I think for the most part, any issues that have ever come up, have been because he's so laid back (lazy is Jake's word for it). And well, sweet Allen just doesn't want to be the authoritive figure. So there have been times I've had to tell Jake to do certain things around the house or they wouldn't get done ~ nothing much, just picking up after himself, etc. I would have preferred not being the one to teach him to pick up after himself, but someone had to do it. He does much better now. Doesn't leave dishes in his room anymore (for the most part), actually rinses them off, has his own checking account, pays his own bills, etc. So our relationship - the whole step-mother thing - it could be a lot better, but it could be a lot worse. I think the world of him. He'll be 22 years old next month, is moving out and back to college. We are praying he will make the best of this opportunity to go to college and the help his aunt and uncle are giving him.
And then the shock of our life ~ on September 30, 2006, in the middle of the night, Allen woke up with abdominal and back pain. I thought he had gas (as this was something he dealt with a great deal). I told him to take something for gas and, if that didn't help, to walk around the house. His pain only got worse. By early Sunday morning, October 1, 2006, I decided Allen probably had a kidney stone. Allen was convinced he has appendicitis. We went to the emergency room about 6am. If I recall correctly, we spent the entire day in the ER. The ER doctor was one Allen was familiar with from when his first wife had visited the ER on many occasions. He originally ordered an ultra-sound but the tech was not available so he ordered a CT of the abdomen. They had already drawn lab and Allen was extremely anemic so he was receiving 2 units of PRBC's (packed red blood cells). When the results of the scan came back, the ER doc came into our little ER cubicle and said, "Well, we have the results of the CT scan back. We found what is causing your severe pain. It's not a kidney stone and it's not appendicitis. What you do have is an extremely large abdominal mass." I'll never forget those words or how I felt when I heard them. Someone had just kicked me in the gut and splashed cold water on my face at the same time. Allen and I just looked at one another in shock and, there in the ER cublicle, tears began to roll down our faces at the same time! To be honest, I'm not sure that shock has ever entirely worn off. Reality has set in but still there are times I think "okay, I'm ready to wake up from this nightmare." Allen and I both knew at that very moment this was not good and life was never going to be the same! Allen looked at me and said "We're going to beat this thing - together." The ER doc told us he was admitting Allen and from there, several more tests would be done. As I mentioned earlier, we arrived in ER no later than 6 or 7am, we did not get up to the floor until after mid-night. It had been a very long day and I was definitely feeling very much in shock, sick to my stomach, lost, scared and confused ~ how could this be happening???
From October 1, 2006, to October 5, 2006, Allen was in the hospital getting a battery of tests, scans, and procedures done. He had a brain MRI, bone scan, MRA, a chest, abdominal and pelvic CT, bone MRI, EKG, echo-cardiogram and a biopsy among other test. The entire time, Allen and I thought they were waiting on the biopsy results to tell us if it was cancer or not. On October 5, 2006, Allen was still in the hospital. This was our one year wedding anniversary and we had planned to be at Niagra Falls. This was definitely NOT Niagra Falls. Well, maybe the tears that flowed - inside and out - could have filled Niagra Falls. My heart was aching. I could not believe that this was happening to my sweet, precious husband. I felt so helpless, very much out-of-control. The nursing staff were all so very kind to us the entire time. In fact, even the ER nurses bent over backwards for us, which is why I knew was not a good sign and indicated to me that Allen's situation was not good. Typically, the nurses in ER don't have much time to do the "nursie nurse stuff" that floor nurses like to do. ER nurses are usually involved in emergency situations and are always focused on the issue at hand, as it should be. However, for Allen and I, after the CT scan results came back, they kept asking if we needed anything, if they could call anyone, etc. I knew things were not good. Then, when we got to the floor, I could see it on the faces of everyone. The nurse to nurse report had not been good. They bent over backwards to make our stay as comfortable as possible. Allen had a great room mate who agreed to let me stay over-night until they could get us a private room. I wasn't about to leave my husband alone in the hospital. I know him all too well and he does not like being alone. He may not talk much, but he doesn't want to be alone. I know, in the hospital, he wouldn't be alone but he'd be with strangers and for him, that's the same thing. I slept in a chair the first few nights and then they moved us to a private room and brought me a cot (which was extremely uncomfortable). I ended up taking the mattress off the cot and throwing it on the floor and that's where I slept the rest of the time. Our family doctor actually told me later that walking in and seeing me sleeping on the floor of that hospital room with Allen in the bed made him realize just how much I loved Allen. He told me he's seen many marriages fall apart when one of the spouse is diagnosed with something like this and, more often than not, he said it occurs with newly married folks. I can't even imagine. Our wedding vowes did include "in sickness and in health." I meant every word of my vows. I wouldn't want to be anywhere else but by Allen's side. It's been that way throughout this entire ordeal. If Allen goes to the hospital and has to sleep there, so do I.
The day of our one year wedding anniversary, the nurse taking care of Allen had a very nice cake made for the two of us, brought us flowers, a balloon, and a card signed by all the staff. It was such a kind gesture! Shortly after, the oncologist came into Allen's room and told us they knew all along it was cancer because only cancer grows the way his tumor had grown; however, the biopsy confirmed it was renal cell carcinoma - kidney cancer. She also told us that it was non-surgical as his tumor was huge, attached to his liver and growing up into his vena cava (main blood vessel to the heart). She said there really were no treatment options for him and there was no cure. Basically, to go home and get his affairs in order. Could this really be happening. We'd only been married a year! And this of all days? This was our one year wedding anniversary! I kept thinking "No! Lord, please no. We've only had a year together. It's not enough time. I still have so much to learn from Allen. Please don't take him from me!"
The local oncologist is a very kind, caring person. She was basically in tears when she gave us this news, hugged us and told us she'd be praying for us. The urologist who saw Allen suggested Allen go to Baltimore to get a second opinion. He said he was aware of a very good genitourinary oncologist at the University of Maryland. Allen and I are so glad he suggested we see her. So on our one year wedding anniversary, we received the worst news possible and then Allen was discharged to go home. Our world, as we knew it, had turned upside down in an instant. Nothing would ever be the same again.
During Allen's five-day hospitalization, I was in complete shock. If it had not been for his Aunt Lamarsha, I probably wouldn't have eaten. His aunt and uncle had driven his parents to be with Allen. They all stayed at our house while Allen (and I) were in the hospital. Also, there was a couple from the church we were attending who really helped me out a great deal - spiritually, emotionally, and physically. Rex and Bonnie were wonderful. I didn't feel so alone because of the two of them. It was really hard going through this not having my family and friends locally. Bonnie even drove me to get an allergy shot because Allen insisted I get it. Allen and I will forever be grateful to the folks who came to visit while he was in the hospital. His place of employment has been absolutely wonderful throughout this ordeal. Several of his co-workers visited him while he was in the hospital. His boss has been absolutely wonderful working with Allen to ensure that he has a job and keeps his health insurance! It's also during this hospitalization that I got to meet one of Allen's best friend's Patty. Patty and Mel were best friends and Allen and Patty were good friends due to their friendship. Patty and I hit it off right away and she was quite helpful in those first few days, weeks, and months. The neighbors that live right next to us were really the only close friends I had at the time. I am so thankful for everything they did for us that first year - from feeding the animals to just being there to listen. As I mentioned earlier, I had only lived in Pennsylvania for a year and had not been working so I knew virtually no one except the one neighbor family and a few folks from the church we had been attending. To go through an ordeal like this without your close friends and family for support is difficult. I can honestly say that if it were not for my strong faith, I honestly don't know how I would have made it through all of these difficult times. He is forever faithful even when we feel like we can no longer move forward - it's during those times that He carries us!
She told us that just recently they had FDA approved a medication for kidney cancer and that another medication was right around the corner to be approved with many others coming down the pipeline. Prior to that time, there were only two medications for kidney cancer - interferon and interleukin. Neither of these two medications were that great of options. Kidney cancer is unfortunately not a cancer that responds to traditional chemo-therapy or radiation. Dr. Dawson also informed us that any treatment she could give Allen would work better if the primary tumor (the tumor growing on his kidney, attached to his liver, and growing up his vena cava) could be surgically removed. At the time of diagnoses, Allen already had multiple tumors in both lungs - too many to count. Dr. Dawson said she realized we'd been told he was non-surgical, but she knew of someone who focused on the complicated cases and, if anyone could do it, he could. So within a week, we were sitting in Dr. Richard Alexander's office. Wow! What a man...what a doctor....what a surgeon! God truly directed Allen to Dr. Dawson and Dr. Alexander! We will forever be grateful for both of them.
Dr. Alexander informed us that surgery was possible; however, it would most definitely be an extremely difficult surgery. He explained that a typical nephrectomy is one of the easiest type of surgeries. Not that ALL surgeries don't come with risk because they do. For every surgery, there is a risk of bleeding and death. However, surgeries do have their level of complications and a typical nephrectomy is considered a rather standard, easy surgery. In Allen's case, his tumor was huge, had attached itself to the colon, to the liver, and was growing up his vena cava towards his heart. Dr. Alexander said that he and the liver transplant doctor would work together on this surgery along with other doctors possibly needing a cardiac doctor to be involved as well. He said he understood why we were told surgery was not possible, that most hospitals aren't equipped with staff or surgical equipment, etc to perform such a complicated surgery. He felt, for Allen, the risk was worth taking. The tumor needed to be removed surgically - it was not felt that any available medication could attack a tumor this size. Because Allen was in relatively good health, other than the cancer, Dr. Alexander believed if anyone could survive such a risky surgery, it would be someone young and healthy like Allen.
November 3, 2006, Allen had surgery - a right open radical nephrectomy with liver resection and vena cava resection. My parents flew to Baltimore from Texas to be with me and to support Allen. I will forever be thankful for their presence during that time. They stayed a week with me there in Baltimore. Allen's parents and his aunt and uncle drove to Baltimore and were there the day of surgery. They went home the following day. Jake did not go to the hospital during any of Allen's time at the University of Maryland - not for the surgery or any of his follow-ups. The surgery took about 10 hours. During surgery, he received over 20 units of PRBC's (packed red blood cells), several units of FFP's (fresh frozen plasma), and several units of platelets. He basically lost his total blood volume and they almost lost him twice on the table.
When the urological oncology surgeon came out, he looked exhausted. He told me Allen was doing good. That it was definitely a complicated surgery, it was touch and go there for awhile, Allen had bleed a lot but was currently stable and, that he, the surgeon, had earned his money and some! The liver transplant surgeon said the same thing - he'd earned his money and some on that surgery! The liver transplant surgeon also told me that he had done an internal ultra-sound on Allen's liver after resecting the tumor from his liver and as far as he could see, there was no evidence of any cancer left on the liver!
After Allen was taken back to the recovery room, I just knew I was going to get called back to see him (as all the other family members were getting called back to see their loved ones). But I didn't get to go back to see Allen. I later learned that they again, almost lost him in recovery and that he was losing blood faster than they could give it to him. So by the time I saw Allen, it was very late. He was in the ICU, was intubated, but awake. Even with the tube in his mouth and down his throat, he mouthed the words "I love you." He had an art-line (which monitors blood pressure, heart rate, etc), foley catheter, drains from his "shark-like" incision, IV's everywhere, an NGT (naso-gastric tube), oxygen, and, as mentioned, he was intubated (a machine that was breathing for him.)
His pathology report showed that Allen was Stage IV, Furman IV and the cancer type was clear renal cell carcinoma with sarcomatoid features. (Cancer stages are from I to IV and indicates how much, if at all, the cancer has spread with Stage IV being the worst. With kidney cancer, instead of using grades they use Furman grades which indicate the aggressiveness of the cancer. Furman IV being the most aggressive.) His tumor was 20cm at it's longest dimension and weighed 10 pounds. It was the size of a volleyball. The surgeon also told us Allen had most likely been walking around with kidney cancer for at least 5 years. Meaning the entire time period of his first wife being diagnosed, treated, and passing away, Allen also had cancer.
When Allen was discharged from the hospital, Dr. Alexander told me I could remove the staples (since I had worked as a nurse) and just call him with a report. No big deal, but there were 84 staples! Allen was not sure he trusted me enough to let me remove the staples. But, in the end, he agreed he did not want to drive 2 hours to get staples removed when I could do it at home. The stable removal went very well. Didn't hurt Allen not even one time! And his extremely large incision healed quite well. When we saw Dr. Alexander for the first follow-up appointment, he told us Allen was definitely a miracle. He didn't think Allen was going to make it through the surgery and then, when he did, he thought Allen would have some cognitive deficits. We were blessed to say the least.
December 2006 - Allen was in the University of Maryland ICU for a week, receiving HD-IL2. This is the only known treatment available to kidney cancer patients that can actually "cure" the patient. It's extremely toxic to the body; but if it works, it's definitely worth it. Allen's oncologist said Allen experienced the most toxic side effects from the HD-IL2 that she'd ever seen. Prior to treatment, she had told me the side effects were all reversible as long as the nurse caught things in time so she was counting on me to be her eyes and ears! Needless to say, the entire time he was in ICU, I did not get any sleep. The protocol for HD-IL2 at University of Maryland was to give HD-IL2 in cycles with each cycle consisting of two rounds and each round consisting of a maximum of 14 doses given every 8 hours given on a "go, no-go basis." The rounds each were approximately 5 to 6 days depending on the patients status. Between the two rounds of a cycle, the patient went home for one week to recoup and then went back to the ICU to do it all over again. The "go, no go" dosing meant that each dose was given on a set schedule. Prior to administering the dose, the nurse had to call Allen's oncologist, give her his vitals, urine output, and other vital information. His oncologist would then decide if Allen would receive that particular dose or not. If she said "no," that dose was simply skipped. Allen received 12 doses the first week; we went home for a week and then returned to the ICU for the second round of that first cycle. The second round he received 9 doses. Typically, the second round, patients receive fewer doses than the first round as the HD-IL2 is more concentrated in the body and the side effects hit faster and are more toxic. Allen's blood pressure while receiving HD-IL2 went as low as SBP 50's (systolic blood pressure - that's the top number), his heart rate went over 200's, he went into respiratory distress, had to have his lungs drained several times. It was a nightmare. I hated seeing him suffer so much. I stayed with Allen every day, all day and night for both weeks while he received the HD-IL2. The nurses told me I had him spoiled. He didn't like being alone. He doesn't like being alone at home, much less at the hospital. We took our music and our backgammon game and enjoyed the time together as much as possible. After a few doses of HD-IL2, there was no backgammon as Allen could barely think straight. He was restricted to the bed towards the end of both weeks. To make matters worse, during the second round, I got really sick, had to call our family doctor for an antibiotic. It was such a miserable time for both of us. The last day, his oncologist walked in about 9am and said she was writing discharge orders and Allen could go home. About an hour after she left, his day nurse walks in and starts to hang a bag of medication. I asked him if that was calcium (because that's what it looked like to me). He said that it was and I asked him to please not hang it. I asked him how long it would take to administer the calcium, because I knew it usually infused over hours and he said a few hours. Again, I asked him to please not hang the calcium and to check his chart, the orders and lab values. I explained to him that Allen's oncologist had just been there and had written discharge orders. Allen did not need calcium. I was sure of it. He went ahead and hung the calcium without any further investigating. I called Allen's oncologist and within 30 minutes, the nurse returned and stopped the calcium infusion. The calcium had been ordered but the intern mistakenly wrote the order on the wrong chart. It was intended for another patient. Had the nurse investigated and looked at Allen's lab work, he would have known that Allen did not need calcium. Just one of the few "not so pleasant experiences" we've had in this journey. For the most part, Allen has received excellent care at all the different facilities. Including his HD-IL2 experience. It's just not an experience I'd want Allen to go through again. However, if there was hope that it would work now, Allen would do it in a heartbeat and I'd be right there beside him! The HD-IL2 unfortunately did not work for Allen.
I should say that for me, the HD-IL2 experience was difficult for so many reasons. The obvious is how hard it was on Allen. Watching him walk into the ICU feeling great and then within a couple of doses of medication, everything was horrible. He couldn't breathe, he got extremely edematous, his blood pressure dropped to dangerously low readings, his heart rate sky rocketed to dangerously high readings, his one good kidney almost shut down, he was a mess. Additionally, not having any friends and/or family there with me made it feel very isolating. Every time I walked out of Allen's room (and only did so when he would fall asleep), when I came back, it never failed, he'd be awake and upset because I wasn't in the room. So I hardly ever left his ICU room. During the second week of his HD-IL2 cycle, a couple of gentlemen from the church we were attending in Hagerstown came to visit Allen. I can't tell you how excited I was to see a familiar face. I just cried. They drove 2 hours one way just to come see Allen. It meant the world to both of us. Gary, one of the guys, sang a song over Allen as a prayer. It was Fernando Ortega's song "Give Me Jesus." I'd never heard it before but it has definitely become one of my favorite songs. I really sensed the presence of God in that room. It was awesome. The other gentlemen, Matt, is a huge prayer warrior with a very kind soul. The two of them prayed with and over Allen. It was amazing and I was so thankful God sent them on that day. Their visit gave me the ability to make it the rest of the week. I can only imagine what it did for Allen.
Allen's surgery was in November and he did the HD-IL2 in December. It was the holiday season, but neither one of us had the energy to think about Christmas decorations. I usually decorate the day after Thanksgiving, but Allen told me not to worry about it. We weren't going to be home to enjoy it anyway! When we walked into our house after his second week of HD-IL2, it was like walking into Winter Wonderland. Some special ladies had come to our home and found our Christmast tree in the basement along with our decorations and decorated our tree for us! What a gift! Allen and I stood at our front door and just cried! It was amazing that folks would be so kind to do something so generous. I should say that the ladies were Patty, Penny, Lynnette, and Kathy. At the time, I only knew Kathy (our neighbor) and had just met Patty. Patty and the other two ladies were from the church Allen had attended before he and I were married. After Allen's diagnosis, he wanted to go back to that church so we'd been attending about a month. We were so blessed by their kindness! Allen and I truly enjoyed the Christmas tree in a special way that year!
January 2006 - Allen started on Sutent. He took 50mg every day for 4 weeks on and was off the medication for 2 weeks. He worked full-time the entire time. He was on Sutent for 18 months. The first set of scans showed some shrinkage and the rest of the scans from that point indicated stability - no growth on existing tumors and no new tumors.
June 2007 - A PET Scan was ordered. Typically, PET Scan's are not used with renal cell carcinoma as they are not they reliable with this type of cancer. They tend to show false positives. However, because Allen had so many tumors in both of his lungs they wanted to see if any of them "lite up" or if any of them were "hot spots." This is how PET Scan's work. They inject the patient with glucose, wait about an hour, then perform the scan. Actively growing cancer attracts the glucose and they can see on the scan to what areas/tumors the glucose has gone. On Allen's PET Scan, only two tumors "lite up" in his left lung and then there was some fluid around his lung that "lite up." Oh, and his left adrenal gland "lite up" but we later learned that was a false positive which happens frequently with PET Scans and renal cell carcinoma.
June/July 2007 - Allen had a VAT-left lung wedge with one tumor removal. His thoracic surgeon attempted to remove the second tumor that had "lite up" but was unable to get to it surgically. Again, I sat in the waiting room alone. It was horrible having to go through that alone. I remember when the thoracic surgeon came out, she told me things went well, but that she was unable to get on of the two nodules she wanted to surgically move. It basically disappeared when they deflated the lung. Then she showed me a picture of the inside of Allen's left lung. I completely lost it. The tissue inside his lung is completely black. She said she's never seen anything like it except in someone who was an extremely heavy smoker for years and years and years. The did a biopsy of the tissue and it came out negative for cancer but it's amazing Allen can breath as well as he can with the inside lining of his lungs being so unhealthy! Allen found the healing process from this surgery to be extremely painful.
On a side note, Allen was diagnosed October 2006, it's now July 2007 and to this point, Jake still wanted no part of what was going on with Allen. Therefore, he still had not gone to any of Allen's appointments or procedures. He basically lived his own life doing his own thing. Life, for him, was just one big party. That's just how he dealt with things by not dealing with them. He'd already lost his mom to cancer. I can't even imagine how all of this has been for him. The one thing I had to put my foot down on was him spending time with his dad. Allen adores his son and it's important that Jake make time for him. Which now, has been pretty easy for Jake. Earlier on in this journey, it was impossible because they way Jake dealt with Allen's illness was by not dealing with it at all. If he didn't see his dad, then his dad wasn't sick. Hence, we never saw Jake....ever.
July 2008 - Sutent stopped working. There was tumor growth of existing tumors and new tumors appeared in his lungs. So his treatment was changed from Sutent to Nexavar. While on Nexavar, the cancer spread to his liver and his kidney bed and his oncologist recommended he get into the RAD-001 (Afinitor) clinical trial. So in October 2008, Allen applied to get into the RAD-001 clinical trial and in November 2008 was approved. We basically had the medication in hand and about ready to walk out the door when the clinical trial oncologist asked Allen if he'd had any headaches. Allen told him no not really to speak of. The oncologist asked what he meant by that...Allen said well I've had a couple of sinus headaches lately and I'm not one to get headaches. So before we could leave, a brain MRI was ordered and sure enough, Allen had a brain tumor. Talk about a kick in the gut. There were three areas in Allen's body that I had prayed he would not get cancer - the liver, bones and brain. He now had it in two of the three areas!
Upon Allen being diagnosed with a metastatic brain tumor in October/November 2008, this is when Jake became involved with Allen's health situation. He offered to drive us to the appointment where we found out how they were going to treat the brain tumor. He also drove us to one of the three radiation treatments Allen received.
December 2008 - Allen had cyber-knife to his brain tumor at Georgetown in DC. This procedure was a "walk in the park" according to Allen. All he had to do was lay on the table and listen to the CD I made him of all our favorite Christian songs. The tech liked the CD so much he asked if I'd make him a copy. It was three days in a row of high dose radiation. Jake drove us to the first session. I drove the following two days.
After cyber-knife treatment, Allen was able to start the RAD-001 clinical trial in December. Good news - the cyber-knife treatment worked. The brain tumor had shrunk. Bad news - the afinitor was extremely difficult on Allen. The side effects were horrible. He was more fatigued than ever. He gained a lot of weight. Retained fluid. Had pneumonitis which can scar the lungs permanently making it difficult to breathe.
May 2009 - After reading on KCA forums about a gentlemen who had flown from Texas to Johns Hopkins in Baltimore for cryo-ablation, Allen and I sent a disc and all copies of his file to that Interventional Radiologist at Johns Hopkins to inquire if cryo-ablation or RFA were possibilities regarding the tumors on Allen's liver or in his kidney bed. The IR originally said no - he would not recommend doing anything because the risk are too high and after doing any procedure, it would not render Allen cancer free. However, I asked him to call Allen's oncologist and explain to her why he felt it was too risky. He called me back and said she convinced him that it was worth the risk. As I've stated before, Allen's oncologist believes that the fewer tumors in his body, the better the chance any mediation has of working. I agree with this thought process. Allen had cryo-ablation on his kidney bed tumors. Not on all of them because some are located too close to Allen's colon and the risk of damage his colon would be too high. This was a day procedure. I wanted to stay at a hotel close by just in case something went horribly wrong, but Allen was anxious to get home. The drive home was extemely difficult for him. He was in a great deal of pain. He experienced a bit of nerve damage during this procedure so his pain lasted a long time. Evenutally, he was put on neurontin and his pain went away!
June 2009 - Allen's oncologist wanted to put Allen on Avastin and Interferon. I asked if we could re-try the Sutent. Originally, when Allen was diagnosed, we were told you try a med, if it works great, but eventually it will stop working, once you go off a med, you never go back to it. However, it was my opinion, that because there were so few meds to be tried with kidney cancer, if a med had worked in the past, it wouldn't hurt to try it again. I had been asking this for some time. So when I asked again in June, I was surprised when she said they had actually been doing some research about that very thing and it seems to conclude that if a med has worked in the past, stopped working, that you can go back to it and it could work again. So that was the plan of action. Try Sutent again. It worked for a year this time.
Allen also decided at this point to apply for disability. He'd been working full-time for a year a a half on Sutent. Not an easy task. It's not typically the cancer that causes discomfort for the patient or difficulty working but the side effects from the medications. Allen decided that since he was going back on Sutent and he knew what to expect with regards to the side effects that he would go on disability and continue to work part-time at the maximum number of hours social security allows, as well as long-term disability from work. And so starting June 2009, he's been working 5 hours a day, 3 days a week for a total of 15 hours a week. This has allowed us to keep our health insurance.
October 2009 - The IR at Johns Hopkins did RFA (radio-friction ablation) on one of lesions on the liver. Again, he was not able to get them all due to their location. Because Allen was in so much pain during the cryo-ablation procedure, we asked Jake if he would join us - this would actually be his first time to be with his dad during an actual surgical type procedure. Wouldn't you know it, the RFA was a walk in the park compared to the cryo-ablation. Allen was not in any pain at all. It was get in, get out, go home!
May 2010 - We received the most awful report ever since we'd been on this journey. Brain MRI showed the brain tumor had grown. Chest scan and abdominal/pelvic MRI showed all tumors had grown. At this point in Allen's journey, he has metastatic disease in his brain, both lungs, liver, kidney bed, gall bladder, enlarged abdominal lymph nodes, and a tumor located close to his vena cava. This report in May 2010 was horrible. Needless to say, neither one of us were expecting this news and were devastated! Everything had grown including the brain tumor which had done nothing but shrink since December 2008. The brain tumor was supposed to be dead. It was never supposed to be an issue again!
June 2010 - Allen was started on Votrient. Allen was also seen by the neuro-surgeon at Georgetown who explained to us that the brain tumor in his opinion was definitely brain tumor growth and the best plan of action was brain surgery. He told us that this surgery on a scale of 1 to 10 for brain surgeries was definitely a 10 with many, many risk. He also told us that the radiation oncologist (the same one who treated Allen's brain tumor in December 2008) also believes it to be brain tumor growth; however, he recommends a more conservative approach. Wait two months, get a repeat brain MRI and go from there. If brain tumor growth, attempt cyber-knife again. If not brain tumor growth, it's actually what is called necrotic tissue spread which occurs about a year to a year and a half after cyber-knife on rcc tumors. The repeat cyber-knife is also risky but, in the opinion of the brain surgeon, not a good option because it apparently didn't work the first time (it bought Allen at least a year and a 1/2 of no brain tumor growth - I think it worked!) Additionally, if they repeated cyber-knife, they would not be able to administer the same high dose they gave initially. The risk of frying the brain would be too huge. Therefore, with decreased radiation, the expectation of it working a second time is very minimal. However, the radiation oncologist feels it's a better option that going for brain surgery. I agree with his way of thinking - go from the least invasive and risky to the higher risk if needed. We sought a second opinion at Johns Hopkins. The neuro-surgeon agreed with the radiation oncologist. Waiting two months for a repeat brain MRI and go from there. He also agreed with the neuro-surgeon from DC. If it is brain tumor growth, he believes surgery is the best option not repeat cyber-knife. He did explain how he would do the surgery which is a bit different than the approach of the surgeon in DC. Allen has chosen to be followed by Johns Hopkins with regard to the brain tumor.
Scan-xiety is a term cancer patients use typically referring to the time period after the scan has been performed to the time they get the report. However, for some patients, like Allen, who get their reports on the same day of the scans and/or MRI's, scan-xiety is the time period leading up to the day of scans and report. This time period varies depending on the patient. I might also mention that patients aren't the only ones who get scan-xiety. We, their loved ones, experience it as well. I typically have handled the scanxiety pretty well throughout all of this. I've always been a glass half-full kind of gal, where Allen is a glass half-empty kind of guy. I have always believed in not worrying about something until you know you have something to worry about. In fact, I tell people all the time, you can't cross the bridge until you get to the bridge; hence, the statement, "we'll cross that bridge when we get there." But on the cancer journey, there are times you worry about a bridge for so long only to find out the bridge doesn't even exist. So, for the most part, I deal with the scan-xiety pretty well. However, from May 2010 to July 2010, the waiting period for the "next set of scans" was excruciating. There was so much on the line. Allen was really stressed out. I had to work really hard at pushing the negative thoughts out of my mind and replacing them with prayers or songs. I would just start singing Worship songs or Praise music. About a week and a half prior to Allen's July 20th appointment for all his tests, I really found peace. I realized I could either continue worrying about the upcoming scans OR I could look forward to July 20th and hearing good news. It was my choice. I didn't believe how I spent those days would necessarily change the outcome of the tests, but I did believe it would change how I spent those days waiting. And either way, whatever happened on July 20th, it didn't make since to waste the time waiting on the tests being stressed out and worrying. I chose to focus on looking forward to July 20th and hearing good news!
In regards to being a glass half-full kind of gal, Randy Pausch in "The Last Lecture" shares a story that really has stuck with me. You have to make a choice in your life. That choice is Are you going to be an Eyore or are you going to be a Tigger?" Well, I have always been a Tigger kind of person. Allen's cancer diagnosis has definitely changed me as a person and I do tend to walk a bit on the Eyore side now-a-days but I am a Tigger at heart. Daily, I try to make the decision to live my life as a Tigger! Speaking of how cancer has changed me as a person. When Allen and I got married, he told me I did two things in my sleep. One, I sang - always worship music and I sang really good (which is really odd because when I'm awake, I can't carry a tune); and the other thing I did in my sleep is laugh a lot. My best friend from El Paso and I used to travel a bit together and she had told me the same thing. I was always happy ~ even in my sleep. I don't do either of those anymore. There's a poem about what cancer can't do. I love that poem, but for me, I've found that it has taken my laughter and my song ~ at least in my sleep. So when I'm awake and conscious, I make sure I laugh and sing. One day, I'll be laughing and singing again in my sleep.
July 20, 2010 - the big day! This was probably the biggest day since Allen was diagnosed. Seemed like everything depended on the results of these scans. The repeat brain MRI showed no brain tumor growth, no brain tumor shrinkage with some decreased edema! Awesome news! No brain surgery needed! The neuro-surgeon at Johns Hopkins is ordering a brain MRI monthly (rather than the previous bi-monthly schedule Allen was doing). He said he wants to watch it like a hawk! Out of the four specialist Allen saw between Johns Hopkins and Georgetown regarding the brain tumor (a neuro-surgeon and radiation oncologist at both facilities) only one has viewed the brain MRI from July 20th and said he believes it to be necrotic tissue. The other three have said it hasn't grown but still too early to say that it's necrotic tissue. I tend to agree with the one that is calling it necrotic tissue because I like that option the best!
Not only did we get news regarding the brain tumor, but the Votrient is working! There were some tumors that showed necrotic tissue in the center and some that showed decreased vascularity (meaning decreased blood flow to the tumor). It's exciting to finally find another medication on top of the Sutent that actually works for Allen. At this point, I think we are closer to the cancer being treated more like a chronic illness than ever before. Having two medications under his belt that work means a great deal. When one stops working, he can switch back to the other one.
Since receiving the report in May 2010 that everything has grown, Allen has not been working. He's officially off work until November 1, 2010, unless he decides he wants to go back to his part-time schedule. He's still working on that decision. With all the stress that having cancer brings, I think he just wants to enjoy the good news from July's reports and let it sink in that brain surgery is not currently needed. Plus, I'm thinking he'd like to have at least one more brain MRI showing no growth before he can believe that it's not brain tumor growth. So the medical plan for now is to obtain a brain MRI monthly to watch the brain tumor until they are 100% positive it is necrotic tissue and not brain tumor activity; and to continue Votrient (praying and believing that it will work for Allen a very long time - continuing to "kill" those cancer cells). In addition to the monthly brain MRI, Allen gets bi-monthly a chest CT without contrast (because it's not necessary for the chest and it's not good for the kidneys) and an abdominal/pelvic MRI with the gandalenium. (MRI's show a better image of the liver than do CT's with contrast and are not as harsh on the kidneys.) He has always had his blood work obtained bi-monthly but now that he's on Votrient, he will be getting it monthly to ensure no LFT changes (liver function test - basically the liver enzymes have to be watched closely while on Votrient.)
Again, as a side note, I'd like to add that when Jake found out in May about the brain tumor possibly growing, he offered right away to drive us to the appointment in July. This year, Jake has really done a lot of growing up. He'll be turning 22 next month. His lifestyle is quite difficult to explain. He's never here. Just comes to the house to take a shower and off he goes. It's been that way since before I married Allen. Allen said ever since Jake got his driver's license that's the life Jake has chosen. He tends to sleep wherever he ends up that night. But since he decided not to go back to college last year and said the reason was so he could spend time with his dad, I made sure they had at least one day a week scheduled that they spend together. And for the past year, Jake has come home on Wednesday night's or Thursday afternoon. The two of them go get something to eat, come home and watch t.v. together for awhile. It's not a lot of time, but it's more time than they've spent together up to that point (at least since I've known them). It's been good for both of them. When Jake gets older and matures even more, he's going to be very much like his dad ~ kind and gentle, caring and thoughtful! He's a good guy. He comes from great "genes."
Yesterday, July 28, 2010, Allen had an appointment with the local oncologist for the first time since 2006. The same oncologist that told him to basically go home and get his affairs in order. The oncologist in DC wanted Allen to get set up locally with someone just in case he needs to go on IV treatment. Typically, IV medications are at least once a week, if not once every other week and she doesn't want Allen having to go back and forth between home and DC just to receive medication. We agreed with her. So, yesterday's appointment was really productive. The oncologist here said she'd be happy to work with Allen's oncologist in DC to administer IV meds if the need should arise. She accessed Allen from head to toe and went over his history with a fine tooth comb. She was really impressed with how well Allen is doing. She asked me if I was working. I told her I had planned on going back to work at the one year mark of our marriage, but that was when he was diagnosed. At there just has never been a time that seemed appropriate to look for a job. There always seems to be appointments, etc. Plus, Allen hates being home alone. Back when he was on Afinitor and having so much trouble breathing, he asked me to stay awake and make sure he didn't stop breathing. I just don't think I could work knowing Allen was at home alone. I told her I'd rather be homeless with my husband, than at work and worry about him. Her response to me confirmed that Allen and I have made the right decision. Although financially it's been really difficult and mentally and physically I really miss working, being with my husband by his side, helping him when he needs help, and just sharing as much time together as God gives us - that's my priority. Her response was that she did not believe Allen would be doing near as well as he's doing if I had gone to work. She told me I was very good for him and that God definitely brought me into Allen's life for a purpose. I thanked her for saying so but assured her that Allen was as much a gift to me from God. He's taught me so much about love and forgiveness. He's a great guy and he's given me roots. He's my world!
I read the following the other day while waiting for Allen during one of his many test....written by a cancer patient:
"Cancer has definitely not been a gift in my life, but it has shown me the many gifts in my life."
I agree with that statement 100%. I could never say that cancer changed our life for the good or that I'm thankful for the cancer. I don't like it one bit; in fact, I dislike it very much. I truly dislike watching my husband suffer. I'd take it from him in a heartbeat if I could, but that's not how God works. The fact that my husband has cancer is horrible....I dislike it more than anything else in this world, but I have learned to accept it. This is our life and through this journey - the kidney cancer roller coaster as I like to call it - has been one filled with many ups and downs with many very scary moments. It's also been filled with many blessings. The blessing of having such a great support group in the kidney cancer community is huge for Allen and I. My bucket list has gotten long ... it used to consist of things I wanted to do, places I wanted to visit ... and it still does. More importantly, the blessings through this journey are more about relationships. I think my husband's diagnosis has changed my family dynamics with my parents, my sister and her family for the better. I don't know how to explain it. We're just closer now. Even from a distance, they are all so very supportive and I could not walk this journey without them. Additionally, I have met so many wonderful individuals within the kidney cancer community online and would love to meet many of them in person. I wish I could have them all over to our house and just celebrate the life of each of these wonderful folks who are fighting this horrible disease. The stories, the heartbreak, the inspiration of all of these folks continues to amaze me! There are those Allen and I have gotten to know via the Kidney Cancer Association forums and others via the KCA chat room ~ now we use the Kidney Cancer Warriors/Chat. Some have lost their battle and with each loss, my heart breaks. So many lives have been effected by this horrible disease and so many at such a young age. Leaving behind loved ones - wives, husbands, children, unfulfilled dreams.
I read somewhere recently ~ We can make all the plans we want to make; but God has already made His plans and He doesn't see it necessary to check in with us.
That may sound harsh to some folks, but for me, it eases my mind. It reminds me, I am not in control ~ God is in control. As much as I love my precious husband, God loves him all that much more. So for me, that gives me peace of mind. God has Allen in the palm of His hand. He's been there with him from the beginning and He will not forsake him. I know that God's plans are not always what we want. In fact, often times they aren't what we want. But I do know that Allen and I are both Christians, so when his time comes or my time comes to leave this earth, it will mean we will be in a place where there is no more suffering, no more pain, no more sorrow. I can only imagine the beauty of Heaven and the constant joy and laughter! It's something I, as a Christian, look forward to experiencing. I'm selfish. I want my husband here on earth forever. I want to spend the rest of my life with him. Hopefully, I will. When it's my husband's time to leave this earth, I'd like to go home, too! But, as Allen always says, you don't always get what you want. And I'm learning, you hardly ever get what you want. We just have to learn to enjoy what we do get. One day at a time. Sometimes, one minute at a time. I am at peace with whatever the Lord has in store for either of us and, at the same time, I continue to pray for Allen's miracle - complete healing! I pray for it and I believe he's already a miracle and I also believe God isn't finished with the miracles! I pray not only for Allen's miracle but for complete healing for the multiple members of our fellow kidney cancer community/family.
Additionally, we've been blessed with a great medical team caring for Allen. We've had to travel to different facilities to get certain things accomplished but it's all been worth it. Allen has stayed with the same oncologist from the beginning because she's very good and because she's very caring! He trust her and I think having a good relationship with your medical team is half the battle. I have the up most respect for doctors. I could never do what they do. However, I will always tell a patient that just because a doctor says something....that doesn't make it the gospel! That doesn't mean I think we as patients know more than doctors or that I disrespect them. I don't. I have a huge respect for doctors and believe your medical team is the most important aspect of your care. That's why you need to be able to trust him or her. Doctors are human too. And just like patients, if you get 5 doctors in one room together to discuss one case, you will probably get 5 different opinions. You, as the patient, have to find the right doctor for you. Someone you trust and with whom you feel comfortable. As I mentioned, doctors are human.
As far as recommendations to other kidney cancer patients, I have many. Most importantly, I would recommend the following:
- Please be seen by an oncologist - at least once. I know some folks will tell you that if you're stage I and they tell you after surgery they "got it all" then you don't need to see an oncologist. I disagree with this. Once you've been diagnosed with cancer, you should be seen by a doctor that specializes in cancer. If he or she refers you back to to the urologist or GP to be followed, that's fine. But at least be seen by an oncologist once and get their opinion on your future care. I highly recommend seeing an oncologist that specializes in rcc. That's not always possible, because there are few oncology rcc specialist. The next best thing would to be followed by a genitourinary oncologist - they specialize in the kidney, ureter, bladder, urethra. I have heard others say that by requesting to see an oncologist, you are causing health care to rise. That not every cancer patient can be treated by an oncologist. I disagree. Our health care system focused on preventative care for the longest time and now they seem to be backing down due to cost. Well, trust me, it's much more expensive to treat chronic illnesses, terminal illnesses are even more expensive. If you have been diagnosed with cancer, you have the right to be seen by an oncologist. Yes, there are excellent urologist out there ~ some that would never tell a patient "I got it all" or "You're cured. No follow up necessary." But a surgeon that is willing to say that to a patient, is not a surgeon I would want taking care of my loved ones.
- If a surgeon tells you "I got it all; therefore, you don't need follow-up," please seek follow-up care anyway. There is no way a surgeon can ever know for sure that they've gotten it all. All they can know for sure is that they got all the cancer he or she could visualize. Follow-up care for someone who has been diagnosed with cancer is absolutely necessary! It is important to get scans (chest and abdomen) on an annual basis. Preferably 3 months after surgery and for the first year, then every 6 months for a year, then annually. However, every state, every facility, every doctor has different protocols. Just know that the more frequently you are followed, the better. After being diagnosed with cancer, annual follow-up for the rest of you life is ideal.
- I'd also recommend reading the "meds page" on this blog specifically focusing on the side effects and remedies suggested by other kidney cancer warriors. Being able to keep your side effects under control is huge. If you can prevent them from occurring, that's really the best case scenario. Not usually possible but it does help to preventively treat for mouth sores, HFS (hand-foot syndrome), etc.
- Support - When Allen was first diagnosed, because of his previous experience with cancer having lost his first wife, he told me NOT to look up renal cell carcinoma or kidney cancer on the internet. He did not want to know that statistics and he thought it best I didn't either. So I didn't go searching online. However, one day Allen finally got online and started searching. He found the Kidney Cancer Association forums and we started reading the post by a gentleman who calls himself "Press On Regardless." His post were inspiring and informative. Because of him, we became active members of the KCA forums and then shortly thereafter started attending the KCA / chat. Both were extremely helpful to the two of us ~ each of them serving a different purpose. The folks in the chat room were not the same folks who posted on the KCA forums; therefore, we had basically two different support groups. I would definitely recommend KCA forums and, of course, KCW / Chat (the chat connected with this blog) ~ as well as the fan pages on facebook for KCA, KCW, ACKC (Action to Cure Kidney Cancer), ACOR, Kidney Cancer Survivor by Lee Cooper, Kidney Cancer Survivor by KCA, etc. There are many very excellent pages on facebook that are informative. The ability to connect with others who are on the same kidney cancer roller coaster is an amazing benefit living in this technology age. The support Allen and I have received from the kidney cancer community has been immense. I can never express just how benificial it is to share with others who know what you're experiencing. It has been our honor and pleasure for the two of us to be able to give back in any way we are able via this blog, the support group and the chat.
Allen has been courageous throughout this entire journey. He truly is my hero! He's been amazing throughout this entire ordeal. Worked full-time for the first 2 1/2 years even while taking Sutent. Many cancer patients continue to work but to continue to work full-time while taking the meds (that make you so very sick) that's what's amazing and there are those cancer patients that continue to work full-time while on treatment. That's amazing! I have the utmost respect for all of them who are on treatment and work full-time! Allen has been through so much in his life ~ having lost his first wife to cancer and knowing how difficult her illness and death has been on his son and now his own cancer diagnosis. I think that's been the hardest part of all of this for Allen. He hates that his being sick has caused Jake and I to be on this "kidney cancer roller coaster" of emotions a long with him. But that's what family is all about. One gets on the roller coaster, we all get on the roller coaster.
Jake has dealt with cancer from the time he turned 13 and he'll soon be 22. At the age of 13, his mom was diagnosed with cancer. At the age of 16, he lost his mom to cancer. At the age of 17, his dad re-married. At the age of 18, his dad was diagnosed with cancer. He'll soon be 22. He's dealt with a great deal in his young life. He's a great person and when he gets older, he's going to be very much like his dad. He truly comes from great genes! He just doesn't want to truly "grow up." Often times, when a young child loses their parent, they grow up too fast. Others kind of stay emotionally in that place where they lost their parent. I think that's been Jake's case. However, he's changed a great deal over the past year. Neither Allen nor I have lost a parent ~ Allen's dad is 92 and his mother is 77; my parents are both healthier than me and are in their early 70's.
Neither of Allen's parent's have a chronic illness except for HTN (hypertension). Allen was diagnosed with HTN is his 20's and has been on blood pressure medication since that time. His mom comes from a family of 19 siblings. Many of her sisters have been diagnosed with breast cancer; but, to Allen's knowledge, there is no other history of cancer in his family. Allen did drink and smoke socially in his 20's for about 5 years but nothing on a regular basis. He also worked as a welder before there were safety laws in place to use protective equipment. So there's no telling, medically speaking, why Allen has kidney cancer. One thing is for sure ~ we both believe everything happens for a reason; and, we are both trying to learn to live out our purpose in this journey called LIFE. Back in October 2006, Allen was told to get his affairs in order. On August 22, 2010, Allen will be celebrating his 52nd birthday - his fourth birthday since being told to get his affairs in order. Pretty awesome, huh? Also, on October 5, 2010, Allen and I will celebrate our 5th wedding anniversary and his 4th "Beating the Odds ~ Celebrate Life" anniversary! We have so much for which to be thankful!
Kidney cancer used to be considered an older man's disease - men 60 and over - but that's just not the case anymore. I can't tell you how many young ladies I've met via the kidney cancer community who have been diagnosed with kidney cancer - just read some of their personal stories here on the blog. Unfortunately, kidney cancer does not play by any certain rules. It is usually not diagnosed until it's in the late stages, unless a person is fortunate enough to have cause for a CT scan for other reasons and it's found early.
My passion as the wife of a kidney cancer warrior is my husband, first and foremost, just living life with him and enjoying every moment we have together knowing that none of us knows what tomorrow will bring; helping inform other kidney cancer patients and their loved ones encouraging them to be their own best patient advocate; and helping to bring kidney cancer awareness to the general public by sharing the personal stories of kidney cancer patients.
Life is precious ~ enjoy every moment as best you can!
Yesterday is history, tomorrow is a mystery, today is a gift ~ that's why it's called the "present." Make the most of it. Always be sure to tell those you love, how much they mean to you. Never live with regrets, it's such a waste of time!
If you've been diagnosed with kidney cancer, know that no matter what, you are not alone! You are loved! And there is support available. There are many others who are on a similar journey. We can't take it away, but we can share the load. Where there is two or more, the load is lightened and the joy is increased! Get involved in an online support group...preferably the Kidney Cancer Warriors Support Group....I only say that because it's the best one ~ not really, but it is the one Allen and I participate in and it has many loving, caring individuals! You can find us on facebook ~ we have a fan page ~ and in chat, which is where most of us can really get to know one another and share our daily journey ~ our struggles and triumphs. We cry together and we celebrate together! It really is a kidney cancer community that has become family! We hope you'll join us! It really is a circle of love ~ no "host" but dedicated "committed chatters" just to ensure there's someone in the chat room when you enter. All of us on the same kidney cancer roller coaster ~ all of us in need of support, understanding, love, compassion, sharing, and caring ~ all of us giving and receiving!
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There comes a time in life when you walk away from all the pointless drama & people who create it; surround yourself with people who make you laugh so hard you forget the bad, focus on the good. Life is far too short to be anything but BLESSED♥ As long as you have Christ, you are blessed: even with the bumps in the road & some not-so-fun roller coaster twists & turns. God is good all the time! Hugs ♥
"Life isn't about waiting for the storm to pass .....
....... It's about learning to dance in the rain." -- author unknown
Allen Reese
Pennsylvania
Stage IV, Furman IV
Dx'd October 5, 2006
Surgery: November 3, 2006 - Right Open Radical Nephrectomy with liver resection and vena cava resection
Meds: HD-IL2, Sutent, Nexavar, Afinitor, Sutent, and Votrient
Procedures: cyber-knife to brain tumor; cryo-ablation to kidney bed tumors
radio-friction ablation to liver lesion
Current Status: mets to brain, both lungs, liver, kidney bed, gallbladder, enlarged abdominal lymph nodes, and a tumor located near his vena cava
Allen is no longer with us here on earth. He won his battle against kidney cancer by the way he lived his life. He will live on forever in the hearts of those who knew and loved him.
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