My Cancer Journey

My Cancer Journey

Diagnosis: Rectal Cancer

History of Diagnosis – I was first told I had a pelvic mass, cancer. In the ER the Gyn/Onc brought in thought I had ovarian cancer. A colonoscopy was done a few days later and the colo/rectal surgeon told my family I had colon cancer. Then when biopsy results came back, they did not stain for colo/rectal and these tests were run several times. So it went back to a GYN cancer. My oncologistinsisted that I go for a second opinion and sent me to the Mayo Clinic; it was there that they diagnosed me after explaining how unusual my case was. However if you ask my GYN/Onc, colo/rectal surgeon and Oncologist they will not give me a diagnosis even to this day and no prognosis. I have heard more times then I care to how rare my presentation is and where the tumor grew and what it has done. There is no text book to go by.

As of November 2006 the final diagnosis is Rectal Cancer, you can read the story behind that below. It is so nice to know what type of cancer it is.

Patient History:

Fall 2005: I missed my period, this has never happened, other then when I was pregnant, could it be? I went to the doctor, I was not pregnant. Watched my periods over the next few months and they were not regular at all, I was never irregular. So my GYN ordered an ultrasound done in November. All clear, nothing unusual on my ultrasound, keep this in mind.

February 2006: Time for my regular pap smear. After tracking my periods they seem to have gone back to normal. Results of pap, normal. And even after physical exam, all was fine.

March 2006: I spent this month in Dallas, TX living in a hotel. Training for my job took me there. I was constipated during the trip; I took laxatives and thought nothing of it. Being in a Hotel, not eating right etc……I am sure that is why I was having bowel problems, right?

April 2006: Just about on April 1st I started leaking, weird? I thought I had an incontinence problem. I let it go for a week or so, and then I called my GYN office and got in on 4/14/06. A pelvic was done and she saw the secretions but could not tell where they were coming from. She referred me to a GYN/Urologist, called them and they could not see me until 5/5/2006(keep this date in mind). I had to wait 3 weeks, so I talked to a friend and he said to go see a urologist and I did, I got in with them 4/20/2006, he did a pelvic saw nothing, he does not think it is urine though, he wanted me to sample from a kotex the fluid. I went to Las Vegas that weekend for Jessica’s 21st Birthday and felt great and had a blast; the leaking seemed to subside, Yea! I returned and the leaking started back up again?! So I spent the next week trying to get a sample, what a chore. I finally took the sample in on May 3rd, 2006.

May 4th: I was at a job site and I went to the bathroom at 9am, and I passed a piece of something, I panicked, what was it! I called my husband and my mom……I was told to go to the ER ASAP. So I did. I would spend 12 hours waiting to be seen. Since I was not in pain, I was at the bottom of the list. But the leaking was really intense and I soiled my clothes as I waiting, very embarrassing. Finally we had a room! The ER doctor came in and did a pelvic; she thought I had a tampon stuck in my vagina, Really? She called in my GYN’s on call Doctor, Dr. T. He did a pelvic, not a tampon, but perhaps an exploding fibroid? He wanted to send me home and come into the office tomorrow for a biopsy. Dr. Lew, my regular GYN was called, NO, do a CT on her. So a CT was done, this was well after midnight and the results would take hours. I sent Mark home to get rest. My mom was up North and we were keeping her posted.

May 5th: The CT had been done and I was attempting to sleep. About 4:30am Dr. T. came quietly into my room, I was all alone. He sat down beside me and held my hand and told me I had a pelvic mass, it was cancer. At that moment I became a Cancer Survivor. I did not cry…..I was not sure what to think, maybe it was a dream? I was alone at the time and I just did not know what to say. I was told I would be admitted for further testing. I called my mother first at 4:30 am to tell her and she said she would pack up and be down the mountain. I waited until about 5:30am to call Mark and he came back down right away.

May5th-19th – I spent these days in the hospital having tests done. On May 14th 2006 I was taken into surgery we thought to remove the tumor. The doctors went in and both agreed it was too large. I was given an ileostomy to relieve the rectal pressure and closed up. When I woke I asked if they “got it all” and was dismayed to hear that they left it all. I spent the next week healing and sent home to face possible radiation and chemo.

May 30th– I was told by my oncologist to get a second opinion to pinpoint the type of cancer. Went to the Mayo clinic and met with their top oncologist. He explained how rare and unusual my case was. He spent some good time with us and came to the conclusion that I had Primary Peritoneal Cancer – Ovarian Based and Chemo of Carbo/Taxol should be used to shrink the tumor before going to radiation.

June 2nd– First Chemo Treatment of Carbo/Taxol. The entire process took 5 hours.

June 14th– My scalp hurt so bad I could barely sleep, is this the beginning of losing my hair?

June 18th Father’s Day – My hair started coming out.

June 22nd– Nancy shaved my hair off.

June 23rd– Round #2 of Chemo.

July 14th– Round #3 of Chemo

July 17th - CT done to check size of the tumor

July 20th–Very dramatic day, I found out the tumor has doubled in size. Radiation will begin ASAP.

July 24th– Started radiation, Day 1 of 28.

August 16th – Rectal spasms had increased and were bad all weekend. They were uncontrollable. I called Dr. Venk’s office, he is gone, and I see his partner Dr. Lori Gordon. She is alarmed and admits me into the hospital for a possible abscess.

August 17th – CT done while in the hospital. Good News! The tumor is back to where it started and the abscess is one the tumor, nothing can be done about that. I am released. Thankful the radiation is working.

August 31st – Last Day of Radiation. It has taken a toll on my body. My bladder is very inflamed and it feels like a bladder infection on steroids.

September 1st – Today I start healing and getting strong to handle surgery the first week of October. I am starting my healing at the Beach.

September 2006 – I spent the month healing and getting ready for surgery. The last few weeks before surgery I felt really good and was able to work as much as I could to get ready for my 2 month absence.

October 2nd– I checked into the hospital at 7am for my 6pm Surgery. A long day of waiting for me. As the day wore on and the time grew closer I was at peace with going under again. I was told surgery ended at 10pm. The doctors gave my family glowing remarks. All the tumor was removed, margins were clear. The rectum was able to be resectioned to lead the way for a reversal, a radical hysterectomy was done and my vagina fistula was closed up. Now the healing begins.

October 9th – I was released from the hospital. Late that night I began to threw-up and into the wee hours.

October 10th – I kept throwing up and was readmitted to the hospital until the 13th. I was not on solids long enough before being released.

October 26th – Appointment with Oncologist to go over final pathology report. My cancer has been listed as non-specific, and unlikely to be colon cancer. Again I am told how rare my case is and all my doctors have not seen a case like mine.

There were also nineteen lymph nodes removed and they all came back negative, but he stated this could be from radiation, but I will take it as good news.

Even though I unlikely have colon cancer per path reports, my colo/rectal surgeon feels I have rectal cancer and my oncologist wants to treat me with post chemo for colon cancer. He recommends a new chemo for colo/rectal patients and states since there is no baseline for my case, there is no prognosis of this chemo. The side effects of this chemo are awful and I do not want to put my body through it. There has to be other answers out there? Someone has to know how to treat me?

November 8th – Appt with Dr. V, he wants to do a Lower GI and Colonoscopy to see how my healing is coming along for a reversal. If all is going well reversal could be in Mid December.

November 9th – I meet with my oncologist again and tell him I cannot go with his recommended treatment, what about second opinions? He will work with Dr V. and try to get me into UofA; my mom mentioned perhaps her brother can get me into Sloan-Kettering.

A call is made to Uncle John and he will look into Sloan Kettering

November 13th – I GOT IN!!!! Appointment at Sloan-Kettering has been set up for November 28th at 11am. I will be meeting with Doctors that actually see cases just like mine, I will not be told how rare I am, imagine that!

November 17th – Colonoscopy was done today, originally scheduled for December 4th, but I have been having rectal pain and Dr. V wanted to check it out now. The enema prep was extremely painful and brought me to tears, my rectal area has not been used or worked in months, some mucus came out and blood. I went into the test in tears from the pain. The test was done and Mark was there when I was done, I was given Versed and was out of it. Dr. V took some biopsies and said I had some swelling and due to the radiation, healing was taking longer and is causing the pain. But he does not see anything “wrong”. Dr. V mentioned not to have the Lower GI on Monday and a CT; he will call and take care of the appt change.

November 18th – Walk Making Strides…..we had fun today at the walk and lots of support came. I loved how the wheelchair was decorated. I thank everyone for their support!

November 20th– I went in for a Lower GI or CT Scan, was not sure or how to prep since Dr. V wanted the Change on Friday and they were closed all weekend. So I stopped eating Saturday night. I went in and Dr. V forgot to call, they, radiology, still wanted to do the test, Lower GI. Since I was not sure what that test was, I asked them and almost was brought to tears again. It is a Barium Enema, worse then my home prep I did to prepare for Friday, I knew Dr. V would not want it, I am still swollen. Called Dr. V’s office and sure enough he apologized up and down for the error on his part, he wants a CT Scan and that was scheduled for tomorrow. Whew! So my mom and I went for breakfast instead!

November 21st– CT Scan done

November 23rd– Hear from Dr. V about CT. CT looked good except for one area, my left kidney ureter is in danger, and there is scar tissue build up. I will need a stint put in.

November 27th – I took our dog out for a walk this morning before we left for NY, on the way back our little little doggie pulled and I was caught off guard and the leash got away from me, so I tried to run, my mind went but my legs did not and I went down and my stomach took the fall. I was in shock; I brushed off and thought all was ok. I got home and called my mom, she told me to check my incision and stoma, so I hung up and did so, called her back sobbing, my incision was bleeding and my stoma was bleeding and VERY swollen, she came over ASAP and called my doctor , she helped clean me up and we went straight in. By the time we got there I was calmed down and the bleeding had stopped. He examined me and said my stoma was very bruised and swollen and the incision bleeding was minimal and I was ok to fly.

Off to New York we went!

November 28th – Sloane Kettering visit. Our hotel was in the same office building as Sloane Kettering out patient center, very convenient. What an incredible place, we were very impressed. We met with Dr. Deborah Schrag, one of their gasternol oncologists. She was great! Explained everything in great detail and gave us her opinion. As she said everyone was “faked” out early on by the CA125 reading which led us on the path to a gyn cancer when all along it was a colo/rectal tumor. Due to our family history of colo/rectal cancer she said I do have a form of Hereditary nonpolyposis colorectal cancer (HNPCC). She would also recommend the same chemo regimen that Dr. Calvacant recommended, she said it is the mop up that needs to be done to be sure no cancer cells are left behind. The Chemo of Oxaliplatin/5FU is not as bad as it was explained to me in Arizona. In fact she said on a scale of 1-10, the Carbo/Taxol I did in June/July is a 7 and this is a 5. Her explanation gave me comfort and made me rethink taking Chemo. The entire visit was so great, just to hear some confirmation of what kind of cancer I really have was very comforting and makes so much more sense know after her explanation of HNPCC(if you want more information about this, look on the web). We all agreed the trip was well worth it, just for that few hours at Sloane Kettering.

We spent the rest of the week having some fun in New York; look at the photo’s page for more details.

December 4th– I returned to work, first day back since September 30th. I put in 4 hours and it felt great!

December 5th – I woke up this morning and I was very light headed, something was not right. I called Dr. Calvacant and got in. I had blood drawn to check my counts. They did some stress tests and my blood pressure decreased significantly when I stood up. They gave me a liter of fluids and sent me home.

December 6th – I woke up this morning and could not get out of bed; I was so dizzy, something is really wrong! My mom called the doctor and they told me to get to the ER. Arrived to the ER and got a room when we arrived, WOW! They put a PICC line in me to draw fluids and use for IV, my veins have been abused. I was sent up to a regular room and admitted into the hospital. My counts were low and that was causing the dizziness. That evening I received 2 units of blood. I was observed for a few days to be monitored. IN the meantime my rectal pain flared up fierce! And some blood was coming out, was I losing blood from the rectum to cause my counts to be low? Saturday my colo/rectal doctor did a scope, my rectum is bleeding but not significantly, I am still healing and there is a lot of swelling still at the incision site, directly relate to the radiation, the tissue is taking a long time to heal, maybe 3-4 months. Everything stabilized and I was sent home Monday.

While in and seeing doctors everyday we discussed the NY visit and all my doctors received a copy of the visit. I told them I was leaning towards doing Chemo now. If so a port would need to be inserted which is done under general anesthia (GA), but I was to unstable to do it this trip to the hospital will have to be done outpatient.

I also saw the urologist about my left ureter while in the hospital, that will also require GA to be inserted, but again I was to unstable to go under to do it in the hospital.

December 13th – Back to work again…..let’s try this again!

December 15th – I meet with a General Surgeon about the placement of the port for the Chemo. It can be done any Monday or Wednesday, I just need to call and make an appt.

I have second thoughts about Chemo. Can my body handle it? Do I want to go through it again? Do I want to risk my life? I am reading and reading about survival stories, those that do Chemo and those that don’t, it can come back either way and some it never comes back. Then there is my dad, he had colo/rectal when he was 40, refused Chemo and is still here today some 30 years later…….can I be as blessed.

I schedule an appointment with my oncologist for 12/27/06 to discuss….I need to pray and read before then.

December 20th – I received some incredible books, highly recommend them! Beating Cancer With Nutrition - Revised [Paperback] by Quillin, Patrick and Cancer - Step Outside the Box [Paperback] by Bollinger, Ty, M(This one is AWESOME and very eye opening)

December 27th – Met with Dr. Calvacant, the oncologist, to discuss my treatment. The first thing he said to me was “Is your port in and ready to start Chemo?” Well “No” I said, I am reconsidering doing Chemo. He said “What else can I explain to you, I thought you understood the treatment plan?” I told him I understood, I just was not sure if I wanted to do the extra Chemo and I am leaning towards not doing anymore Chemo. I want my body to heal and use alternative methods to prevent the Chemo from coming back. Dr. C. said all of his patients my age do the Chemo after surgery, well maybe I will be his first not to. Dr. C told me that if the cancer came back it would be more then likely incurable. What if I do the Chemo and it comes back will it still be incurable, well yes it will. Hmmmmmmmmm