January 2011: Tammy Shaw

Featuring and Written By:
Tammy Shaw 

 

Hi, my name is Tammy, and I’m an RCC patient.

(Now you say “Hi Tammy”)

 

I’m 42 going on 25, married, mother of two, and a grandmother.  I buy emergency and disaster response equipment on the clock, and I paint, draw, and take pictures (and volunteer with the local CERT—Community Emergency Response Team) when my time is my own.  I’ve also returned to school to finish my management degree.

In June 2010 I went to my doctor’s office with stomach pain.  My primary care physician was on vacation that week, so another physician in that office (an OB/GYN who looked to be about 12 years old!) saw me. I was admitted immediately to the hospital, suspecting pancreatitis or an ulcer.  I was in the hospital 48 hours, during which I had blood tests, ultrasounds, and CT scans with contrasts.  I was on a zero intake diet, and fentanyl for pain (which made me very nauseous, so they augmented with a nausea medication). The first day, after the first CT scan, I was ordered another CT scan and ultrasound.  They called in the night radiologist, and these tests were done about midnight.

I don’t remember much about the stay, except that my veins kept collapsing (I had 17 sticks in 48 hours).  They decided I likely had an ulcer, and prescribed ulcer medication.  Someone did mention in passing that there was something on my kidney they were looking at, but nothing more was said, and I didn’t think anything of it.

I was sent home with the ulcer medication, and an appointment with the substitute physician two days later.  

I went, with the idea that I would be asked how I was feeling, and if the medicine was working.  That subject was all but ignored; instead, the 12 year old doctor was saying things like:  solid mass, kidney cancer, renal cell carcinoma, surgery, kidney removal. 

I left with an appointment with a urological surgeon. I was reeling.  I made it through the appointment, and went to my car and wept.  Then I went home and cried my eyes out all over again. I waited until my husband came home so I could tell him in person, and so I could pull myself together.  It was such a hard thing to do, as his mother died of cancer in 2001 ... the long, ugly, hard way.  He was his calm self, and said "Whatever happens, we'll get through it."

I had one more ultrasound the next week, and was scheduled for a needle biopsy the day after that.  I took off work, my husband took off, my father came with me, I fasted, and showed up for the biopsy.  I was all registered, had my hospital bracelet on, and was waiting for my turn.  The radiologist came out, and said “Didn’t someone tell you that your biopsy had been cancelled?”  "NO......" 

So I called the 12 year old doc, who said “Well, we don’t really like to talk about this over the phone.”

“No problem, I’m here in the building anyway; I’ll come right up”

“I can’t do that right now, the nurses are all at lunch.”

“Then you’d better tell me over the phone.”

So, sitting in the waiting room of a hospital, in front of everyone, I was told over my cell phone that my mass was confirmed cancerous, and thus the biopsy was cancelled.  My husband held me while I cried … again.

Fast forward to surgery scheduling:  the first surgeon I was set up with was not in my network (so I found out after the surgery was scheduled).  So I started over, this time with a urological surgeon who specialized in renal cancer.  He was well published and recommended, and the surgery was to be done at KU Medical Center in Kansas City … all good developments in my mind.

August 9, I was admitted for a 3-4 hour (deep breath) laparoscopic robot assisted partial nephrectomy.  It turned out to be a 7 hour surgery, due to: internal scarring from a previous gall bladder removal; being overweight; position of the tumor.  My entire left side was so swollen from being on my side all day that they had to cut off and replace my hospital bracelet.

The recovery has been much worse than I anticipated.  I was in the hospital for 5 days.  One of the 7 incisions was stitched so tightly to my (back?) that it made a depression, and resulted in a burning tearing sensation whenever I moved or stood up.  I wore a strapped compression garment for about a week to keep everything held in, and that helped some.  I couldn’t get up or down or shower on my own.  I slept in a recliner for three weeks, as I couldn’t lie flat in any position.

I was off work for 3 weeks, part time for two more.  My husband literally did everything.  He doesn’t cook, so we had every fast food and drive through in our town for a month.  He has been an angel.  Patient, helpful, gently pushy when necessary. 

It’s four and a half months later.  I am on a heavy Ibuprofen regimen for 30 days to relieve/reduce some continuing inflammation and swelling.  I still cannot wear regular waistband pants like jeans in my old size, but am now in my regular size in other pants.  I still tire easily, and have pain nearly every day. I can't move or lift anything heavy without cramping pain. But I'm feeling better each day.

My first set of post-op bloodwork / xray / ultra- sound came back last week clear (woo hoo!), and I think it was a turning point for me.  I feel now like a survivor, like I’m not in the middle of a life-threatening crisis, but more like the victor in a battle.

I’m back to painting and photography, and looking forward to taking a vacation in 2011, since we missed it last year.  Other items on my to do list: become an EMT this coming year; go to the beach in a two piece (ok maybe that’s a stretch); dance all night without tiring out.

Here is where cancer has taught me a very valuable lesson:  My attitude has changed considerably.  I was (and still am) a dyed in the wool, textbook Virgo.  I’m anal, detail oriented to a fault, nearly always annoyed about something, high strung, and am no good at being “idle”.  But now I take everything with a grain of salt. I don’t let work stress me nearly as much as I used to.  I play more and laugh harder.  I smile more.  I have even cooled a few relationships with people who just drain my energy. In short, I don’t waste moments.  I can’t get them back, and one never knows how many are left.

It is a work in progress, and the new zen of my existence doesn’t always show.  But each little moment treasured is a moment not wasted, and each day ended with a smile is a victory.

Tammy Shaw
Kansas

 Tammy and her man

Tammy's Son

 Tammy and daughter

December 2010: Jill Monahan

Featuring and Written By:
Jill Monahan

With my sweet husband Jim, who is my rock

November 2009

In the late summer of 2004, I was a month from my 40th birthday, newly pregnant for the second time, and looking forward to a sibling for my then toddler daughter. On a Sunday morning, I woke early feeling sick-ish. I decided to take a shower, and while in the shower, started to feel violently ill. Pain was coming from deep in my left side, and I thought I was bleeding from my pregnancy (in retrospect it was blood in the urine.) I thought I might be experiencing a tubal pregnancy so my husband Jim took me to the ER. They performed an ultrasound and said that the baby was not in a fallopian tube, but rather in the uterus and was fine. My pain had subsided during my hours of waiting in the ER, and the doctor thought I might have a UTI so I was prescribed antibiotics and sent home. That week I was very ill with what was probably some kind of virus, and continued to see blood. At the end of that week, I saw my gynecologist for a regularly scheduled early exam and learned that I had miscarried. She felt that the virus and the miscarriage weren’t related, and told us we could start trying to conceive again soon.  Over the next several months, I had periodic blood in my urine and experienced back pain. Several times I went through the process of going to the lab to give a urine sample, being diagnosed with ‘probably a UTI’ and given antibiotics.

In early 2005, I was again newly pregnant, and the pregnancy was confirmed to be a healthy one. At about 8wks, I woke in the night in horrible pain; my urine had a lot of blood in it. I knew it couldn’t be a tubal pregnancy, so figured it might be a kidney stone. So off we went to the ER again, arriving at 3:30am. The attending physician in the ER was initially very grouchy; apparently we were interrupting his sleep. However, when Jim held up my urine sample, which looked like a cup of fruit juice, he quickly changed his tune. An ultrasound was performed and I was told that I had a large cyst in my kidney. They couldn’t perform a CT scan because of my pregnancy. The urologist who was assigned to me ordered a MRI to be performed as an outpatient. The MRI folks, however, turned me away at the appointment because I was still in my first trimester. I rescheduled the test for the beginning of my second trimester, six weeks later.When I arrived at the imaging center, the MRI tech again refused to scan me because of my pregnancy. He had me talk on the phone with a radiologist at the hospital affiliated with the imaging center; she asked me to come to the hospital so that she could perform an ultrasound. She was very kind, and very thorough; she spent a long time with the ultrasound and brought in another radiologist to consult. In the end they decided to do a brief MRI. When I came out of the test room, the radiologist told me there was a mass in my kidney. Mass? I asked? You mean as opposed to a cyst? Yes, she said, and I could see the sadness and caring in her face. I was stunned; did not know what to think.

My urologist recommended that I go to Cleveland Clinic (where I also happen to be employed) to see someone more specialized about the mass. I made an appointment with one of the urologists, and mentioned to a friend/co-worker that I was seeing this particular urologist in a couple of weeks. My friend works directly with the physicians, so I wanted her opinion about this physician. She didn’t know him well, but she thought I should be seeing someone else… namely Dr. Andrew Novick, who was at the time, the chairman of the urology institute at the Clinic. (Dr. Novick has since passed away, a victim of cancer himself.) She called his secretary and arranged for me to be seen by him.  When I met with him, he told me that due to my pregnancy, he wanted to biopsy the kidney. After that “fun” experience, the results were “inconclusive”, which in his experience meant “malignant”.  He and my obstetrician (I had been referred to a high-risk OB at this point) agreed that the kidney had to come out. So, Dr. Novick sent me across the Clinic campus to meet one of his surgeons, Dr. Kaouk.

Dr. Kaouk is a soft-spoken yet very confident surgeon. He explained that he would try to do the procedure laprascopically, and we could see that he had all confidence in the procedure going well. He was, however, very concerned about my growing fetus, especially since I was his first pregnant surgery candidate. He spent a long time looking at his surgery schedule to figure out how quickly he could get me in to surgery; at this point I was about 16 weeks along and he didn’t want me to grow too much bigger before he operated. So, the surgery was set for the following week… only 5 days away! My head swam with all the things I needed to do before going out on medical leave, but the short window gave me less time to fret and worry.

The surgery went very well, though I awoke in terrible pain thinking "hey, isn’t laprascopy supposed to hurt less? While in post op. I was visited by OB folks who came in to do an ultrasound. I slept through that, only waking a bit when they finished and said “your baby is fine, Mrs. Monahan”. On our way home from the hospital two days later, I felt the baby move for the first time, which to me was a sign that everything would be all right.

The tumor in the kidney was about 11.5cm. It was a grade 4 tumor, clear cell RCC, but all margins were found to be clear. I rested and recovered from the surgery, and the rest of my pregnancy was very uneventful, until October 6, 2005, when my new daughter was born. Life was good for our family.

Scans six months later were clear, and I returned for more scans a year after the nephrectomy. Those scans were not so clear. A nodule in my lung was seen, and a lymph node in my abdomen had grown. I was immediately referred to an oncologist, Brian Rini, who saw me the next day. He felt that the lymph node was enlarged as a result of my surgery but wanted to biopsy my lung. After that even MORE “fun” biopsy, I waited for results, and was told that it was not malignant. I had frequent scans over the next year, and in the summer of 2007 the lung nodule had disappeared altogether. I started feeling more confident that I was in fact still cancer-free.

That confidence was shattered in July 2008 when the abdominal lymph node grew again. Back to surgery I went to have the node removed. The pathology report noted that the node was in fact renal cell carcinoma, news that shattered me. I hoped and prayed that removing the lesion would take care of my cancer for good, but my very next CT in November showed that a mass was growing in my left side, under my ribs. It was decided that the position of the lesion was not conducive to using cryoablation, so I saw another surgeon who removed it in February 2009. It was again RCC, and while I was not happy, I was not as shocked and crushed as I was the first time. I ended up with my incision opening, and got to experience the joy of daily wound packing, then saw a wound care specialist when the wound wouldn’t close completely.

Happily, my April 2009 scans were clear. But the cancer struck again. In July 2009 several lesions were seen in my liver and a mass had appeared on my right ovary. Now we were into seriously scary territory. Dr. Rini felt strongly that the ovarian mass was not RCC, and hoped that the liver lesions were hemangiomas, so he sent me for MRI testing. Upon reviewing the films, it was decided that the liver lesions were likely RCC. Dr. Rini consulted with my gynecologist and it was decided to NOT biopsy the ovarian mass, but to start systemic treatment and re-assess… if both areas responded to treatment, then they would know the ovarian mass was RCC. Dr. Rini talked with me about a couple of options he was recommending for systemic treatment. I, however, had learned a lot about HDIL-2, thanks mostly to the folks on the Kidney-Onc list on ACOR. When I suggested it to Dr. Rini, he was supportive of my pursuing it. He recommended I consult with Dr. Olencki at OSU Medical Center in Columbus, Ohio, or with Dr. McDermott at BIDMC in Boston. Jim and I discussed the options at length and decided that Columbus would be the best choice for our family; one of the many wonderful people I met on Kidney-Onc encouraged me to stay “local” as well. The program is well-established at OSU and I figured that since the medicine is the same, it could work there as easily as in Boston.

We met with Dr. Olencki in late August 2009 and he agreed that I was a good candidate. The next couple of weeks were a flurry of tests and consults to make sure I was healthy enough for IL-2 – I spent a lot of time on the road between Cleveland and Columbus. I started IL-2 on September 10, 2009 and made it though 7 doses before giving up mentally and physically. We had decided that Jim would stay home with the girls while I was in the hospital, and that decision turned out to be less than optimal for all of us. While feeling very ill, I also really felt the alone-ness of being by myself at the hospital, despite daily visits from two of my best friends from childhood, along with some family that came down from Cleveland. The girls had a very hard time with Mommy being away; my younger daughter acted out by cutting her and her sister’s hair, as well as decorating our stairway with a permanent black marker. My husband felt strongly that he should accompany me for the second week of that first round, and while I didn’t want to disrupt everyone’s lives more than necessary, I really was glad that he was coming with me. Our girls stayed with Jim’s parents, where they were pleasantly distracted and did well.

My second week of that first round of IL-2 turned out to be the scariest. My blood pressure tanked and so I was not allowed to sit up, much less get out of bed. The whole experience was very hazy to me; I lost complete track of time. Later I learned I’d been given Ativan, which did its job in making me not remember my misery. At some point I was almost taken to the ICU but my blood pressure rallied in time. I “celebrated” my 45th birthday that week, though it passed by mostly unnoticed.

Upon my return home, I noticed that I wasn’t bouncing back as well as I did the first week. At first I assumed this was because of the cumulative effect of the IL-2, but as time went on, I felt increasingly jumpy and noticed my resting pulse was very high. I had little appetite but was losing weight at a far too rapid rate even so… in 2 ½ weeks I lost 27lb. I had thyroid tests done and it turned out that I was in a hyperthyroid state. From a cancer fighting perspective, thyroid changes are good news, but I felt completely lousy. I had an appointment coming up with an endocrinologist but one afternoon I looked and felt so bad that Jim called a nurse advice line. Upon recording my symptoms, the nurse directed me to go the ER, so I did… where I had a perfectly miserable experience, only finally getting some sort of treatment (beta blocker) after 6 hours or so. The beta blocker brought down my pulse so I was discharged with a prescription, which made me feel so much better within a couple of days. The endocrinologist reassured me that I was likely experiencing thyroiditis, though she did send me for a nuclear scan. My thyroid stabilized and I felt much better, returning to work a few weeks later.

I returned to Columbus for scans in mid-November. Dr. Olencki called me with results; stability of all mets, or as I told people, “nothing new, and nothing grew”. So that meant two more weeks of IL-2, starting just after Thanksgiving and ending a week before Christmas. I got 9 doses of IL-2 the first week and 6 doses the second. By Christmas I was toast. Luckily, Jim and I had done our shopping early and on-line so we just had to wrap gifts. My lasting gift from the IL-2 was joint pain, which was excruciating when I was discharged and took weeks to resolve. I gained a new admiration for people with arthritis from that experience.

I returned to work the second week of January, which in retrospect was too soon, despite the fact that I work at a computer all day, but I coped. It took a while to get my energy back; I couldn’t do many stairs and any long-ish walk (like grocery shopping) was exhausting. My memory was horrible as well; I frequently had trouble finding the right words or remembering small things like where my car was parked. Over time, these effects went away and I now have a great energy level and better memory – I am going to blame middle age for my lapses now.

I had scans in early February, and learned that everything remained stable. This was good news but because there was no measurable shrinkage, they did not feel it was in my best interest to continue IL-2. I had mixed emotions about that because, while I dreaded going back for more of the evil stuff, going back would mean we could see it working. Dr. Rini here in Cleveland told me that since there was nothing new to treat, we’d go 3 months and scan again.

After my scans at the end of May, Dr. Rini had good news and bad news for me. The liver mets were the same or maybe a bit smaller than they’d been last summer. That was great news; the IL-2 was perhaps still working its magic. My ovarian mass, however, grew. Dr. Rini consulted with my gynecologist, who consulted with a gyn-oncologist. He scheduled me for surgery to remove the mass, along with the right ovary. He also planned to remove a mass near the left ovary and one in the middle of my pelvis. I had that surgery in August, and awoke to learn that both ovaries had been removed; however, the pelvic mass was on the colon and so the surgeon didn’t want to remove it and have to turn my robotic procedure into an open one. He felt that what he removed was RCC and the pathology proved him correct. So, I went through menopause in 3 hours.

Once I recovered from the surgery, I started on Sutent, on the standard 50mg and 4/2 week schedule. Scans in November showed shrinkage of all mets and even the disappearance of two of them. My side effects have been annoying but tolerable, so I will continue on Sutent as long as it continues to work.

All through this journey numerous people have complimented me on my positive attitude and ability to roll with whatever has come my way. I’ve been told that my attitude is why I’ve done so well. I sort of agree with that, but truly, I feel like I have to be positive. I can’t just lay down and wait to die, especially when I have a very good chance of, at the very least, holding this disease at bay so that I can live my life. In addition, my daughters are now 8 and 5 years old. It’s not fair to them to have to live through this experience; I get truly angry at the thought of dying before they are grown. I fight for myself so that I can share their lives with them, and so my husband doesn’t have to raise them alone. Those girls are my inspiration; I looked at pictures of their sweet faces to get me through IL-2, and they will continue to inspire me to survive whatever comes my way.

My inspiration

November 2009

Being Silly With My Girls at my Cayla's 5th b-day party

October 17, 2010

 

Our Unit

November 2009 

From my last cycle of HDIL-2, $8k worth of cancer killing goodness

At my six month follow up after my nephrectomy,
with Dr Kaouk and my then newborn
December 1, 2005

November 2010: Dave Herin

Featuring: Dave Herin
Written By: Carolyn Herin

My name is Carolyn Herin and I have the most adorable husband, Dave. Cancer entered our lives on Jan 15, 2010. Dave was having lower back pain with discomfort and nausea after eating. We received the results of his scan with wide eyes and disbelief. He had a large mass of 13cm on his left kidney with mets to his liver, both lungs and lymph nodes. Dave is 34 years old, a neuroscientist conducting research and an assistant professor in the Psychiatry Department at the University of Minnesota. Not sure if it was professional courtesy or not; but, by later that afternoon, we were squeezed into an appointment with a kidney cancer specialist at the U of M cancer center. He was started on Sutent in effort to shrink the tumor before removing it. The biopsy of his liver confirmed clear cell renal cell carcinoma. A brain MRI was scheduled to check for mets as Dave had a history of headaches;  unfortunately, it revealed 4 mets as well, one too large for radiation alone, it had to be surgically removed. Dave had to stop taking Sutent in preparation for the surgery. On Feb 2, 2010, Dave had a left craniotomy to remove a 5 cm mass from his temporal lobe. The surgery was unremarkable and after 2 nights in the hospital, he was home recovering without complications.

Now a little back-story. We are new to Minneapolis-moving here from Houston, Texas so Dave could begin his career. Dave and I had just gotten engaged one month before finding out about his diagnosis. Our families and friends, our support, was back in Texas. We decided to “up” our wedding and with 8 family members surrounding us, we were married Feb 13, 2010, on the same bridge where he proposed to me in December.  Yes, outside in Minnesota in February! And, yes, 11 days after Dave’s brain surgery!!

Dave remained off Sutent for gamma knife radio surgery to the other brain mets and surgery bed. We had another interruption with Sutent again later on due to a grand mal seizure 3 weeks after the radiation, an unfortunate side effect. We happened to be in Florida on our honeymoon-it occurred our second night there. Dave was then started on Keppra for seizures and not able to drive for 6 months. Re-staging scans after the on/off cycle with Sutent revealed some shrinkage of primary tumor. We were thrilled. The decision was made to remain on Sutent for another cycle without breaks to drive this tumor down. The following scan was not good. Sutent stopped working. Dave then started Afinitor and Avastin together. That treatment was not working either. Votrient was started and Dave was finally set to have surgery on June 30, 2010. It was going to be a tough surgery as the primary tumor appeared to have attached itself to his intestines. After a couple hours, the surgeon came out to talk to me.  If he removed the kidney with the tumor, he would be doing more damage than good as Dave’s intestinal tract would be too damaged.  They closed him back up without removing the tumor or the kidney. Dave still had to recover from the large surgical incision as a result of the attempted open nephrectomy. While in the hospital, Dave became allergic to the heparin they were giving him to decrease the chance of blood clots postoperatively. He developed heparin induced thrombocytopenia ~ his  platelets dropped to a scary low number. While in the hospital on July 4th, he started coughing up blood.  A bronchoscopy was ordered and revealed RCC mets inside his airway. The cancer was out of control and he was not in any condition to reinstate treatment. It took 3 weeks in the hospital for the blood counts to normalize. He was restarted on a low dose of Votrient and slowly advanced to the full dose. Another brain MRI revealed excellent results from the initial radiation; however, 2 new spots were identified. A second round of gamma knife was completed on Aug 25, 2010.

Now a little more back-story. Dave continued to work as much as he could and wanted. He was able to work from home and also give 3 talks during this time at various conferences. He had very mild side effects from the various medications - that allowed Dave to remain so functional. We were able to travel and continue our “new normal” life during this time. I was in awe of him and his abilities. He is a fighter and has remained positive the whole time.

Labor Day weekend 2010, Dave began coughing up large quantities of blood with blood clots. We rushed to the ER and they discovered a complete obstruction of his left lung from the airway mets and bleeding in both lungs, his left lung had fluid and collapsed; he had to have emergent surgery to remove the clots and fluid. After 2 days on a ventilator, Dave was stable and could breathe on his own; however, the outlook was not good and he was very weak. We decided on palliative care with hospice. Three weeks of being home, Dave continued to feel better and get stronger. He was breathing better and even started showing breath sounds in his left lung. There was always a possibility of the clot dissolving on its own and Dave was showing signs that the clot had dissolved. We did some traveling during that time and then came to the conclusion that we wanted to get back on treatment. Our oncologist was supportive and Dave just last week on October 22, 2010, started Gemzar and Xeloda.  These are chemos that are used with other types of metastatic cancer. As we have all read, RCC does not typically respond to traditional chemos. There are a couple new studies that showed some response in the more advanced cases as a salvage treatment. We are not sure of the response but just remain hopeful for more days together. Our goal is getting to celebrate our first year of marriage on Feb 13, 2011.





Dave is no longer with us here on earth as he won his battle with kidney cancer by the way he lived his life!  He will live on in the hearts of those who knew and loved him!

Sadly, Dave Herin, 35, passed away February 19, 2011.

November 2010: Cheryl Cash

Featuring and Written By:

Cheryl Cash

Cheryl Cash Carner Born 2/21/60


Born on the night of the Fifty Fellows Ball in the midst of the Mardi Grass Season, to a Protestant Mother of English descent and a Catholic Father of Irish descent, I should have known life would be full of conflict. Making my entry to the world at Providence Hospital on Springhill Avenue where my Mother was a Labor and Delivery nurse. Mother’s very good friend Dr. N. L. Brown left the ball and arrived at the hospital to carry me down the hall to the nursery, in his tails, red hair, and jolly face, smelling of Chevis Regal and Irish tobacco. I was taken home in a few days later in those days via a 1955 Chevy down the avenue, canopied by oak trees covered in Spanish Moss and which is home to the magnificent Mitchell Bragg Mansion which the Union Army used as headquarters during the occupation. Yes, it is true the south has never gotten over the war. My childhood was happy and enhanced by a multitude of cousins, aunts and uncles along with a live in maternal Grandmother who preached fire hell and brimstone. My sister thirteen years my elder was like another Mother. My Father worked at the Post Office when I was born and had never stopped talking about his days during the war transporting German prisoners as an MP.

Life was good enough but I always had the desire to spread my wings and try life on my own, so I left home at 21, dropping out of college and running off to Houston, Texas. I spent a decade working 8 to 5 as an entry level employee still hoping to find a man to save me. I slipped and fell and was off work for a year to undergo back surgery. During that time I met a fellow I lived with for five years and spent my early 30’s raising a wonderful little angel named Jabriel. My sweet little boy and I had many adventures together as we potty trained while running a Video Store, but one memorable week was one we spent at home together watching movies with Hand/Foot/Mouth disease (coxsackievirus A16) that lovely contagious thing children get at daycare. I had no idea this would just be a dress rehearsal for my 50’s. He was the light of my life and when I lost him when the relationship with his Father ended; I became an ambitious career woman where I mastered call center life, followed by cocktails and dinner with friends. Workaholic I became but I loved my life and all those that have crossed through it and I treasure my memories and friends every day.

Losing my job due to 911, I was traumatized and once again I tried to reinvent myself and finally was led to move back to my birthplace in Mobile, Alabama in May of 2003. My widowed Father a WWII veteran was in his late 80’s, so it was a good time for me to make Alabama home. My Mother had died several years earlier from pancreatitis after surviving colon and breast cancer. Lucky for me I got home just in time for my 25th High School Reunion and met my future husband, Mark. I thought he was the most interesting man in the world; Mark was a former Green Beret, 82nd Airborne, Ship captain working then as a long haul truck driver. Getting a job in Mobile was not as easy as finding a man the saying goes “you must be born in Bienville Square on Mardi Grass Day under an azalea bush”, after a year I found a call center position in Birmingham and Mark and I relocated.

Life was fun, a new relationship, new apartment in the best part of town and new management position. Frequent trips home to Mobile and even my cousin Rebecca, Penny and Daddy making their way to Birmingham. What more could I want in life? Then Precious and I became friends in the parking lot of my apartment over a year period, my tuxedo kitty, then about a year later she brought Beuregard to the door, one cold night since he was too silly to forage on his own, so now we were four instead of two.

Someone in my office was starting a ghost hunting group and I joined. While in college I had been a member of Speakers Bureau at South and went on a ghost hunt with Ed and Lorainne Warren, so I was excited to try it again. Now I had new friends and new adventures and settled into a new kind of recreation to substitute for former days of cocktails and dinner with friends. Now it was late nights of picnics at Sloss Furnace and road trips to Andersonville civil war prison, Athens and Montevallo colleges. New bonds and then belly dancing class replaced the high school years of square dancing. Then came Facebook and I was on a social network roll and I became reunited with the love of my life, my long lost step-son Jabriel. I was so lucky to find that he remembered me and accepted me back into his life.

Now that you know me, I think the best way to tell my cancer story is to give you time frames so I will stick with month and year. The most important thing about my journey is my family and friends, laughter, prayers and encouragement and a wonderful team of Doctors we hired, along with great medical insurance and disability insurance. Nothing in life prepares you for this journey but the blessings you are granted along the way make all the difference in the world. If this blog (my story) helps one person I know why God has allowed me to live and fight this battle.

June 2008: Weight 230, 5ft 3 inches, Smoker, Good results from my regular six month internal medicine doctor appointment. Only a change in the Synthroid I had been placed on about a year earlier for a thyroid that announced it might be the cause of my life-long weight problem. Mark and I planned a week of vacation in Mobile to spend with my Dad so I was busy on my laptop on my days off trying to get all of my work done to leave my center for a week. Since I managed a team of 15 representatives with an assistant and I had to hurry to get all my call monitors done for the month. I was having trouble concentrating and was feeling tired and weak and was running a low grade fever. I blamed the fever on my allergies and the tired feeling on the stress I was under at work. I had gone from a magical high performing team that welcomed people into my company that gave me national recognition to a job of drudgery where representatives were glorified bill collectors and I was made to feel inadequate by my superiors.

Mark ran to the store around lunch and picked us up a bite to eat and bought me a bottle of blue Gatorade. Wow did I perk up! I began to live on Gatorade for the next few months.

July 2008: My Father passed away a few days before his 93rd Birthday, one week after our return from vacation and we rushed back to Mobile for another week. I felt terrible and continued on Gatorade for pep. Returning to work I was very tired all the time and very sensitive and even my boss mentioned that the grief had affected me more than I realized. (Gee My Dad just died)

October 2008: While doing bills at my desk one day I filled out a cancer policy from Mutual of Omaha, “with my family’s history my turn will come one day!” that is actually what I said to a coworker. I took a fast trip with friends to Gettysburg, Pa, (Ghost Hunting) had a great time but was again tired and living on Gatorade. The Monday night before Halloween I got home from work around 10 p.m. and went to the bathroom as usual, there was no pain; just a rush of urine and when I got up it was the color of Hawaiian punch. To say the least I was confused and being 48 I thought it might be female related. I drank a bottle of water, alerted Mark and went to the bathroom again and everything was clear. The next morning at the office I set up an appointment for 1 p.m. with my internal medicine physician. Everything was fine at the office and then around 11 a.m. the same thing happened, this time I burst into tears and went to my Human Resources office. I called Mark and we went to the Dr. Office together.

Dr. Frank Ruedeseal had been my physician now for several years and I felt very confident going to his office. He immediately ordered a urinalysis and suggested starting as if it were a really bad UTI, he prescribed a very high-powered antibiotic and told me that it could be either a lodged kidney stone, problem with the lining of the bladder or kidney cancer. He ordered a CT scan and a dye test for the kidneys that we had to wait for United Health Care to approve. Mark and I went home after stopping by P.F. Changs for to go food and prayed for kidney stones. I had no pain until Thursday night, I noticed my lower back was sore. Friday I found out my tests were approved and I was scheduled to go to Brookwood Hospital Monday morning for the two tests. I worked all week, was off on weekends and would take Monday as a vacation day. Several times during the week I felt the same rush and there was blood in the toilet, since I thought it was kidney stones I did not alert my doctor. Once again I was working on my laptop at home during my off hours.

I should have notified my doctor.

November 2008: Sunday morning I started my Fleets prep test, I never got past the first 2 pills and the liquid breakfast. I was cleaning our apartment and getting ready for Monday while Mark napped. I went to the bathroom and the Red Sea began, it kept coming in waves and this time there were clots but no pain. I called the Dr.’s answering service and awakened Mark while I packed a go bag. Mark rushed me to Brookwood where my emergency room horror story begins.

I insisted on driving having been independent most of my life, Mark kept thinking I was passing a kidney stone and I hoped for this as well. I smoked all the way to the hospital and the pain began, I was having bladder spasms something I remembered from my early 20’s when I had UTI’s. The pain was getting intense when I was taken to an E/R room and told I would have to use the E/R bathroom down the hall. The E/R Dr. ordered a CT scan and it seemed like it took hours, we arrived at the E/R around 11a.m., there were numerous trips made by me and Mark to the bathroom in the hall where I moaned in pain trying to use the bathroom and only a trickle of blood could be seen each visit. I even popped out my IV during this time and Mark had to hold my arm with direct pressure while we were given no help by a nurse who asked “What do you want me to do?”

Around 5p.m. the E/R Dr. finally came back and turned the above TV off in our E/R room and said, “You have a huge mass on your left kidney, has anyone ever told you this before?” I looked at Mark with tears in my eyes and said, “Call a priest..” Now the Dr. ordered a shot of morphine and a catheter bag, what glorious relief this was after an afternoon of suffering.

Dr. Holly was on call with a large Urology group in Birmingham; he came to my E/R room. He was great with a reassuring grin that everything would be all right and that I would have to have my kidney removed in the next few days. He told us that based on the size it was most likely cancer but many people had their kidneys removed and that would be the end of it. We finally were admitted to a room, the nurse suggested my husband return home we had two cats that needed to be fed and prepare to spend the night. I asked for some sheepskin lined slippers he had custom made for me up north and he went home to begin the telephone chain. He notified my sister Penny in Mobile and my friends Sherry and Angela in Houston who called Pam in Jacksonville and Anna in Louisiana. He stopped at Subway and picked me up a turkey sub knowing I had missed dinner with my late admit. We hunkered down in the cool room after I ate where I had ordered the A/C be placed as low as it would go and he slept on the fold out lounger in misery while I prayed in silence.

The next morning we were greeted with a wonderful full breakfast for both of us and my “team” of doctors began to arrive. We met Dr. Hammontree who would be my surgeon and remove the kidney, with hand assisted laparoscopic radical nephrectomy. Dr. Ruedeseal rushed in from his office in the same complex. We met the IV team since the E/R had made a mess of all my good veins and I had some more tests preparing for surgery on Tuesday morning, Election Day. So for more reasons than one I would not cast a vote for Obama. The catheter was having to be flushed very often during this time full of clots. I can remember one particular nurse whom I reported later who was very inappropriate with the methods used. Monday I received two visitors (Amanda and Cinnamon) from work and numerous phone calls. Flowers began to arrive and you just knew things were bad. Everyone tried to reassure us but we were very afraid we just never said anything.

Tuesday morning they awoke me early for a shower and the surgery prep, Mark and I watched meaningless daytime TV while we waited for my sister to arrive from Mobile in time for me to go to surgery. I remember Penny being there while we were in the surgery waiting area and I did chat up and flirt with the anesthesiologist, he was cute. The surgery nurse was great and we talked about how hard it is to stop smoking. I kept telling everyone I had quit on the drive to Brookwood. Mark and Penny told me how much they loved me and I knew I would have a IV in my neck by the end of the day due to failed veins. I don’t remember too much after that except I knew I looked horrible when I came out of surgery with my head taped to the right for the IV in the neck. What a week this would be…. Gil dropped by one day from work, and Mitzi an RN and chum from grade school came and spent one night with me in the hospital to give Mark a break.

Everyone was so quiet when they came into my room as if they were coming to a wake, everyone knew but us how bad it was. The next day after surgery my sister got me in a shower chair and hosed me off as I shivered and tried to get me to eat which I would not. I had hand assisted laparoscopy and my chubby body was more swollen and sore than I had ever remembered. I thought I was a pro at surgery having had tonsils out at 25, old-fashioned gallbladder at 29, lumbar lamenectomy at 30 and a benign lump from each breast in the same time frame. The same day Wednesday the acid reflux began, I was absolutely miserable. Soon to find out my tumor was 10.6 centimeters but it was encapsulated still waiting on the pathology. I cannot really remember when the vomiting started but it continued up until the morning I left Brookwood.

During this week a local priest came by to anoint me with oil and pray with me. I hired another Dr. for my “team”, Dr. Luz Feaster Burgos (Hematology and Oncology). Tim, one of my nurses recommended her he thought our personalities would be a good match and Dr. Hammondtree called in haste and she was in my room within an hour. She is my hero and my angel, I can always hear her heels coming down the hall. She did her best to prepare us for the future letting us know I would have scans in 90 days to determine if my clear renal cell carcinoma had metastasized she let us know there would be no cure but there would be treatment. She told us there were shadows on my lungs and liver, we hoped they were scar tissue from mono as a child and bronchitis. Oh Well, if was I would not be writing this blog right?

The vomiting got worse and it was the color of poop, right when my surgeon suggested a stomach pump, Mark said what about a cod liver oil pill, she has not pooped since before surgery. Wow what a grand idea and a suppository was ordered. I pooped and this stopped some of the vomiting. Dr. Burgos had already increased the nausea meds and started me on prescription Prilosec. I don’t remember sleeping for days the nausea was so bad and the vomiting was night and day, but thanks to the morphine, I had no pain just a few hallucinations.

Finally after ten glorious horrific days of misery, I was allowed to go home with a new title, Clear Renal Cell Carcinoma. I secretly vomited while waiting for my discharge papers I wanted the hell out of that hospital. God was so good to me though it was a crisp morning, I had not eaten in days and since we lived close to the hospital on Highway 280 we had ever fast food imaginable. I agreed on Zaxby’s, Mark had the insight to order me a Minute Maid Light and he ordered himself a chicken nugget dinner. I remember I ate one fry and one tender but downed the lemonade. My man had the foresight to hit the Linens and Things final closing sale and purchase a feather bed with two new pillows for our queen size bed. This made the bed so inviting when I got home and Beauregard jumped on the bed right on top of me on the covers. Life was good, I was alive and I was home. The first few days were rough and Guy Ferra led me through the night with Diners Drive Inns and Dives and I started to get an appetite back, I had dropped 20 pounds. Within five days I got dressed and went to Wal-Mart and road a scooter to purchase some groceries. My husband called Mutual of Omaha and found out that I had just been covered for 30 days and I would be covered for my surgery and we should file a claim. I felt too bad to go to Mobile for Thanksgiving but managed a trip before my return to work on December 15, 2010.

December 2008 I was really not ready to come back to work, but I was afraid of what was ahead of me and had already used 6 weeks and knew FMLA only covered you for 12 weeks. I returned to work with a pillow for my chair, was told to sit in my pod (cubicles for 15 and then an assistant desk and my desk) around my team and just catch up with classes on line and take the team back over in a week, while another assistant was acting supervisor. The team was a little spoiled having had a subordinate grade their calls and coach them while I was out instead of a supervisor, so a couple of them reported me for being on the internet while I was eating lunch at my desk.

January 2009: Work was so stressful and I was so happy to be alive and I was very open about having cancer with my peers and upper management. I had read plenty on-line about cancer discrimination and the work place and thought it was best to be upfront and not hide it. During that month, I was put on a written warning for the complaints my team made about me on December 24.  For the first week I was back on light duty. I was in shock as I had no previous write-ups. I saw the writing on the wall, I was in management, I knew I was being set up. Unknown to me, the team had never been told I was on light duty, they just thought I was lazy, nor did they know I had cancer and had almost died.  They were left in the dark even after I had given the call center director permission to tell them. My feelings had been hurt that I had not heard from any of them while I was out sick nor had they sent me a card or flowers. I immediately called EAP (Employee Assistant Program) and started seeing a counselor and contacted an attorney for advice.

February 2009: Work was still stressful but some moments of joy. I was open with my team about my cancer and I started getting apologies from the very employees who had stabbed me in the back. I had my follow-up scans on the 18th and I was very hopeful. While I was drinking my two cups of contrast, I sat next to a man who was wearing a mask and told me he had lung cancer.  He said, “everyday we live brings us one day closer to a cure.” The next day we met with Dr. Burgos, she was very serious. I remember when she walked in and told us that I had metastatic cancer, I started to weep. Mark held my hand as she told us that I had over 11 nodules in my lungs and several in my liver. She pulled a piece of paper off the exam table and started to tell us about three drugs used for treatment and her suggestion was to start off with Sutent (Sunitib) and that I would take 14 days of 25mg. and then 14 days of 50mg and then 14 days of rest and come see her for blood work. We were both in shock and put all our trust in her and immediately agreed to the treatment and she sent me over to Brookwood for an echogram of my heart and made arrangements for a pharmacy to deliver my medicine to the door the next day. I cried so hard during the tests thinking of all the things I loved and what I might miss, but the ladies were so nice, we went home and I cried some more as we called friends and family to tell them my new title, Clear Renal Cell Carcinoma with Metastatic lungs and liver. My doctor had told us she could give us no prognosis since Sutent had not been on the market a full five years from trails, she mentioned no stage. That night I secretly went on the internet and matched my initial tumor size to the metastatic and quickly realized in quiet agony that I was indeed Stage IV.

The next morning I needed to fire an employee and had all my paperwork together and an appointment with the Director and Assistant Director of the call center. I bounced in the office and told them before we got down to business I needed to tell them something of a personal nature and I just burst into tears.  I told them of my new medical news. They were in shock.  They did not realize my battle was only beginning. They had me go home for a week with pay to find out what I needed and get adjusted to my meds. The first week of side effects were minimum, we decided I would take the Sutent every night at 9pm with Reglan for nausea to try and ward off and sleep through the side effects. I also started taking two pomegranate gel caps a day along with two cranberry gel caps at Mitzi’s suggestions approved by Dr. Burgos. I already was taking Fish Oil, multivitamin, synthroid, prilosec, diazide, xyzal and Paxil , under Dr. Ruedesil’s supervision. When I returned to work, I found out my own vacation time was used for my week off work.

March 2009: Due to my written warning, it ruined my chances of a good shift on our call center shift bid, even though I had good stats. (the set-up) I ended up working Friday, Saturday, Sunday, Monday from 5am to 4pm. This was a nightmare for me in good health, due to the fact I had always worked either 8am to 5pm or nights. I have never been a morning person. I hung on to my deceased Mother’s words, “what goes around comes around.”

Since I had three days off in a row, Sherry in Houston sent me a ticket on Southwest to come visit her on my off days. This was on my 3rd week of Sutent. The first night we had dinner at her house on a Monday; Tuesday we went shopping after a wonderful Texas Style Barbecue lunch, it went straight through me and I was so thankful for such a clean restroom. That night we went to my favorite seafood spot called Pappadeuax’s and I thought this does not taste as good as I remember, but the Merlot went down easy. The next day I ordered a turkey bacon club at Chili’s and I kept adding salt. I had no idea that my taste buds were leaving me. I remember I was so tired all the sudden. One day sitting in the car with Sherry I started to cry. I had been so amazed at how her daughter Ashley had grown into such a lovely young woman and I said I so want to see her graduate from high school next year. Sherry and I cried together because we both knew I was terrified I would not live to see that day.

I returned to work and I was so tired. I remember having to get up to keep from going to sleep, running to the bathroom all the time and my feet started to hurt. Several times I almost chocked while eating lunch, trouble swallowing. I had started the Hand/Foot/Mouth Syndrome. I remember we had our semi-annual presentations and my feet hurt so bad, I had to wear my fleece lined bedroom slippers from the parking garage to the office building. One of my co-workers asked what was wrong and I compared the symptoms to the illness children get in daycare; however, mine was caused by the medicine. Later that day, I was called in by my supervisor and told that I should not over-share, people were afraid. A few days later, it was time for my checkup with Dr. Burgos and there was an incident that morning at the office and with everything that was going on I just felt like they did not want to accommodate my illness and they were trying to fire me. Dr. Burgos had no idea about what was going on at work, I only asked her what happened if you lost your job while you were on this type of treatment. She stated that without this medicine I would be dead, that you have to do whatever you can to keep your insurance. She prescribed another round of 50mg Sutent, at this point, I had to come in once a month for blood work. (All I had to do was tell her the truth and she would have taken me off work, but I had not even discussed what was going on with Mark yet.)

When Mark and I got home, I had a couple of calls from work about the day’s events after I had left. I burst into tears my head was pounding so hard.  I told Mark I thought my company was setting me up to be fired and I could not go back. I was terrified; I had lost jobs in the past to layoffs but had never been treated like this by an employer. I called Dr. Ruedeseal’s office and told the nurse what was wrong and set an appointment for the next day. Mark sat with me in Dr. Ruedeseal’s exam room while I cried and poured my heart out and told him of all the things that had happened at work. First, he said I worked with a bunch of idiots if they thought cancer was contagious; the last thing I needed was stress and this medicine was too hard on me to be at work. He ordered a CT Scan with contrast of my brain for the next day since I had a headache for over 24 hours. I called my office and told them I was being taken off work for tests and would let them know at the end of the week when I had a proposed date to return to work. Dr. Ruedeseal kept in touch with Dr. Burgos and Dr. Hammontree and vice versa.

I learned a very valuable lesson, be very honest with all your doctors and family about everything, even little things as they happen at work. The doctors are treating the whole person not just the cancer, stress is your worst enemy when fighting this battle.

April 2009: This was now about my third CT with contrast, I must admit I like the stuff in the IV. LOL Dr. Ruedeseal called a day later to tell me the Sutent was working since I did not have a brain tumor. I was just too upset and he increased the Paxil, gave me Lortab for the headaches, and Zanax PRN (as needed). He wrote and excuse for work for 6 weeks and I filed for more short- term disability through my insurance carrier and found out all the details of long-term disability and I received approval. One night I did start throwing up, was afraid it was the Sutent. Called Dr. Burgos and she called in phenergan suppositories suggested I had gotten the flu, then realized the night before when I was picking up meds at the pharmacy I was next to a man picking up phenergan for his wife. (Challenged immune system) I know use the drive thru!


May 2009: Time for my CT with contrast on chest, ab and pelvis! (Take an anti-nausea drug 30 minutes before your test and bring ice to put in the drinkable contrast.) The next day Dr. Burgos walked in the room and hugged both Mark and I and told me that I was down to 4 nodules in the lungs and 3 tiny ones in the liver. We talked about the multiple side effects and the fatigue and she agreed to take me down to 37.5 mg. of Sutent since the drug was so rough. During this period I also had to go on Laxis, my potassium got too high and start taking B12 with folic acid. This made the HFMS bearable and I could taste again until about week four. Weeks three and four are always the hardest and then the first week off Sutent I am still very tired.

Mark and I made a trip down to Mobile and on the 22nd, we were married at the Justice of the Peace with Penny as a witness. Mark had to rush me to a McDonalds so I could use the bathroom (Sutent) right after we left the courthouse. There was an older man sitting by the door and he said, “you sure are a good looking woman!” I just love the South! Mark did not feel well enough to go out to dinner so Penny and I had dinner at Banana Docks were Mark and I met at our 25th reunion. Cancer creates unusual romance; we agreed we would take our honeymoon during a winter month after his VA kicked in sometime in the future. The next day we had a nice family dinner with his Mother and her husband and my Dad’s house.

June 2009 I applied for ADA leave with my company when my FMLA ran out and they continued you to work with me. However each time I had a Dr. note sent to the office I was in constant worry that I would not be approved and would face the huge Cobra payment I knew we could not afford. I cannot tell you what a hardship it was on 60% of my salary. Mark had been off work for several months due to his back since he could not pass a physical. We had intended to apply for VA disability the previous October but my illness changed that focus. We made our appointment with the VA for August and realized we could not keep living in Birmingham with all our bills. We started making plans to relocate to my Father’s home in Mobile which now my sister and I owned.

July 2009 Packed for the move went to all appointments. Turned in my laptop to work had not had any access in a couple of weeks and turned of internet access to the apartment. I so missed being in touch with Jabriel. Some days I would read articles about upcoming movies or see a preview on television and wonder would I be alive to see the movie? Would I ever get to visit Jabriel and hug him in person or hear his voice? Would I ever make it to Savannah?

August 2009 Attended Mark’s VA appointment and went to more CT’s for me with more good news. No nodules in my lungs and 3 spots in the liver. Yippee! Dr. Burgos also said we only had to come every three months at the same time as the cat scans and she did not want me to return to work at this time. I told her I was not changing my healthcare but would get an MD in Mobile for secondary infections and to keep my thyroid monitored. We moved on the 15th, it was so hot I don’t know how I did it. Mutual of Omaha sent their check for my surgery and that helped with the extra expenses.

September 2009 It is sheer bliss not to be responsible for all the cooking and laundry moving in with my sister was the best! If I felt bad I could stay in my nightgown all day. Dell Laptop delivered and wireless internet installed, back on Face book! Approved for Social Security Disability will start in October. Approved within four months by Allsup. Will still receive disability through my company, but my disability was shorted due to pending SSD, what a distaste! I was so upset I started calling agencies and made payment arrangements on bills. I applied for Co-Pay Relief through Patient Advocate.

October 2009: Given a $3,000. Grant for Co-Pay Relief to be used over the next year for my Sutent Co-Pay and any medications started due to Sutent and any pain medication. Went to the Board of Health in Mobile and Mark and I both took the H1N1 vaccination, and took Tetanus and Flu Shot at the MD’s office. I contacted a local ghost hunting group in Mobile and joined and became a lead case manager I was thrilled, I could still have a hobby.

November 2009 My first cancer Birthday! My first phone conversation with Jabriel, I heard his voice! Going to Birmingham became a nice little trip, we stay in the same LaQuinta in our old neighborhood every trip, sometimes in the same room. They give us a military rate which is cheaper than the medical rate. Next round of Scans all is good I tiny spot in my liver. Dr. Burgos wants me to lose weight, I have gone crazy since the diagnosis and for the first time in my life I have not dieted and have gained weight every visit. I have told all my friends I am on the cancer diet and can eat anything I want! I am up to 265 pounds. Was exposed to bronchitis in the waiting room at Brookwood, came down with it in 72 hours. My M.D. prescribed 2 sets of shots and had 3 rounds of antibiotics with x-rays to shake it. Yippee no hospitals visit!

Wear the mask provided in hospital waiting rooms, who cares if people stare, it might prevent a secondary infection.

December 2010 I wrote Jabriel a long letter and sent money for Christmas, that is what college kids need most. Mark decided to sell his truck to help cut down expense since we were both off work! My second Christmas, I thought last year would be my last. My Mother-in-law gave me a black train case full of Lancôme, that become my new meds bag! It is so stylish! I was in my 8th cycle of Sutent.

February 2010 Wonderful to go to Birmingham in cold weather, I am stable. Let’s watch the B12 with folic acid it looks low. Dr. Burgos was very upset about my weight gain, I was tipping the scale at 270, she talked about the weight being harder on me than my actual cancer and we needed to come up with a game plan. I admitted I had been eating whatever I wanted and whenever! We had a long talk about pistachio ice cream.

May 2010 Another trip to Birmingham and the news is I am stable and folic acid with separate B12 was added to my meds. I dropped 5 pounds and Dr. Burgos was so happy! Mark’s best friend and children came from Talladega to visit us the afternoon after my CT’s. This time my employer said they could no longer approve my ADA leave, but I was eligible for the Obama Plan on Cobra, this was good news because Mark was scheduled for major back surgery on the 20th. The worst part was losing my life insurance what will I have to leave Mark? I have no regrets about my employer in all the corporation was great to me. Since I went out on leave there was no need to stay in touch with an attorney in regard to work, being given over a year of ADA leave was a blessing.

I picked out a female gynecologist and had my pap and my mammogram, good reports. My gynecologist told me that if I indeed did not have a period by August 15, 2010 I would officially be starting menopause and if I noticed any bleeding or discharge to make an appointment. We would wait until next year to think about hormones and she did not see the need to place any more meds on me at this time. Next year I will also have a bone density test.

We spent our first anniversary at Mobile Infirmary, sharing take-out from Morrison’s, still no dinner out, no trip to Savannah. I was in my fourth week of Sutent and my foot blisters acted like I was on 50mg. One of my dear childhood friends was in the ICU at the same hospital and I was able to visit her several times during that week. She died a couple weeks later of clear renal cell carcinoma with sacramatoid. She only lived 6 months from diagnosis. Penny attended the wake with me while Mark was at home recovering from surgery.

June 2010: Went shopping with my sister who included a run to Wal-Mart, I got very tired and hot in the store, the A/C in my SUV seemed to need Freon and I started to cry I was so hot and miserable. When we got home I took a tepid shower to cool off and a headache started, about 30 minutes later I threw up. I took it easy for the next few days after getting overheated. In hindsight I probably should have gone to the E/R for some IV fluids it took a couple of weeks before I really felt better.

July 2010: I had one day where I started to feel bad and actually threw up my lunch. I can pinpoint it back to what I had for lunch the previous day, some bad fruit. When on chemo we have to be ever so careful and our stomachs are more sensitive than without it.

August 2010: Life is good, finances are so much better. Mark was approved for 100% Social Security Disability and partial VA benefits and we wait for the final decision. My sister went with me for my appointments, we had fun shopping and going out to lunch and dinner. I had my CT with contrast and it is so much easier to get down with ice. My results were stable and Dr. Burgos put it to words, I am Stage IV and there is no going back, I am not a survivor but am living with cancer. She was not concerned about the throwing up, documented but felt that the reasons given; over heated and bad food were the causes. I am approved for more rounds of 37.5 mg of Sutent and back in November for my three month check up. Dr. Burgos approved me to start Weight Watchers my weight was at 267 pounds, she expects results of loss by November. Dr. Burgos was concerned that my sister mentioned I am snore so much and am tired all of the time and recommended a sleep study. She said that sleep apnea could prevent weight loss and increase my risk for Type II Diabetes. I have scheduled the consult for a sleep study for the first week of September, joining Weight Watchers the first Thursday of September. Oh and I so have to stop smoking again, I stop, I start, it is the worst habit in the world.

September 2010: Dropped by my MD’s office in Mobile to check my thyroid just to be sure before I start WW. I got the dreaded call that my sugar was high and was told that after the Labor Day Weekend I needed to schedule a 2 hour glucose tolerance test. The same weekend I attended my Aunt Catherine’s funeral and wrote and read the Eulogy a first in my lifetime. One of the goals you never made for yourself but it felt good to be here to eulogize someone else and made me realize again how happy I am to be in Mobile. In the back of my mind I was wondering why is my body betraying me, why has the good Lord put so much on my plate, I want to live.

God granted me another wonderful gift. I am not diabetic, but he gives a good wake up call. I have now ended my affairs with Sir Almond Joy, Barron Blue Bell and the Lord of Keebler. I have had that giddy feeling all day like you get when you fall in love! I am a born again, say no to sure my cancer diet of “eat all you want of whatever you see”, obviously has not worked for me. This weekend I celebrate life and honor September the 11th at the Annual Gone With the Wind Rummage Sale at the Mitchell Bragg home on the lawn, followed by lunch with friends, my sister and great niece at the infamous Dew Drop Inn. Next Thursday I walk through the door and become a member of Weight Watchers, Jennifer Hudson watch out!

October 2010: I am about to celebrate 2 years of living with kidney cancer, and now I attend one more funeral. One of my close childhood friends husband was diagnosed with liver cancer in February of this year. I had prepared food to take for a visit and four days before I got to his house he passed away. Bryant husband of Mitzi who nursed me in the hospital when my kidney was removed will now bury her husband because of cancer. I keep living while others die around me. I thank God everyday for this time. God added a kitten to the household named Grey after my great niece Hayden Grey,

The rest of my month is filled with fun with Ghost Hunters of the South, along with an overdue trip planned to visit Lafayette and hopefully see my step son after more than fifteen years.

The best advice I can give you is thank God every day, thank your family and visit those sicker and weaker than you. Moving back to Mobile has allowed me to be closer to my cousins, aunts and uncles and be there to cheer them on in their own battles. Yes I am careful and if they are contagious I stay away but I talk to them on the phone. Laugh ever day and with Sutent it come easy, thanks to the noxious uncontrollable flatulence. But it is good to be alive! LOL

My Weapons of Mass Destruction against Sutent Side Effects:

• Wonderful Husband
• Burt’s Bee’s Blemish Stick
• Bacitracin, 2x2’s for open foot blisters
• Blister Band Aids for closed blisters of any kind
• Lanicain Spray for cat scratches, burns
• Great In-Laws
• Ugg Boots-Winter
• Crock Flip Flops and Easy Spirit open back tennis shoes-Summer
• Sheep Skin Lined Slippers
• Bath and Body Works Shower Gels/Lotions
• Pyrex Free and Clear to wash clothes
• Wonderful pets (Precious, Beauregard and Grey-cats)
• Smart Water
• Fiber One Bars
• Minute Maid Lemonade Light
• Clairol Nice and Easy
• Wonderful Sister
• Great Friends
• Facebook
• Kidney Cancer Association, “Bill Bro”
• Regular Pedicures
• Manicures
• Charmin by the case
• Tuck’s Hemorrhoid wipes
• Summer’s Eve Powder
• Corn Starch/Vaseline (homemade butt paste)
• Gold Bond Foot Lotion
• Caress before you Dress
• Dr. Scholl Mole Skin by the role for my feet found at Target
• Neosporin Ointment for further treatment of scratches and burns
• Federal Medical Leave Act
• American’s with Disabilities Act
• Cancer Care ($300 Travel Award)
• Ghost Hunting
• Allsup (filed for disability 4 month turnaround) 1-800-279-4337
• Kidney Cancer Warriors
• Patient Advocate Foundation Copay Relief 1-866-512-3865 
• Multiple Websites, dealing with discrimination in the work place and cancer