- My Cancer Journey

Tempe, Arizona
Learn to get in touch with the silence within yourself, and know that everything in life has purpose. There are no mistakes, no coincidences; all events are blessings given to us to learn from.
Elisabeth Kubler-Ross
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My Cancer Journey
Liz Itter
Initial posting: September 1, 2006

Update: February 20, 2009

Diagnosis: Rectal Cancer

History of Diagnosis

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 oncologist insisted 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 4, 2006: 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 5: 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.

May 5th-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 30– 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 2, 2006 – First Chemo Treatment of Carbo/Taxol. The entire process took 5 hours.

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

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

June 22 – Nancy shaved my hair off.

June 23 – Round #2 of Chemo.

July 14, 2006 – Round #3 of Chemo

July 17 - CT done to check size of the tumor

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

July 24 – Started radiation, Day 1 of 28.

August 16, 2006 – 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 17 – CT done while in the hospital. Good News! The tumor is back to where it started and the abscess is on the tumor, nothing can be done about that. I am released. Thankful the radiation is working.

August 31– 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 1, 2006 – 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 2, 2006 – 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 9– I was released from the hospital. Late that night I began to throw-up and into the wee hours.

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

October 26– 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 8 – 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 9– 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 13 – 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 17 – 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 18Walk 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 20– 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 21 – CT Scan done

November 23– 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 27– 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 28– 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 4 – I returned to work, first day back since September 30th. I put in 4 hours and it felt great!

December 5 – 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 6 – 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 13 – Back to work again…..let’s try this again!

December 15 – 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 20– 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 27– 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
Dr. C wants to see me in 3 weeks to see if I have changed my mind, I am not sure I will.

December 28– I met with the urologist about getting my Kidney Stent put in. This will be done on an outpatient basis on Friday January 12th, 2007. It does require a general; I will check in the morning and go home that night.

January 10, 2007 – I met with a Naturopath doctor who himself had cancer 9 years ago. Gave me an eating plan I am reviewing and some supplements. He wants me to do aggressive IV supplements like Vit C and something else. I need to research that more and I requested to talk to some of his patients. It would be 4 times a week 2 hours a day for 6 weeks. The eating plan and supplements are logical, not sure about the IV’s. Will do some more research.

January 12 – The ureter stent is placed under GA. In and out…..I tolerated the procedure fairly well and everything went as expected. Felt some bladder pressure over the weekend, nothing too bad. He does not want to see for 2 months, unless I feel pain or blood in the urine.

January 17 – My oncologist met with me. We went over the blood work and it is AWESOME my CEA is 1.2, which 3 is the baseline, so that was awesome and CA-125 is still single digits, anything under 35 is normal. But my hemoglobin is still hovering low, 11.2. A Dr. C still wants me to do Chemo and I am still saying no.

January 28-30- I was having some difficulties keeping my ostomy wafers to stay, not sure what was going on. Twice Sunday night it blew and changing them in the wee hours was not fun. Then Monday afternoon one started leaking, rushed home changes and 3 hours later again. Twice again through Monday night into the wee hours, I was one tired gal! Called into work Tuesday, too exhausted to go in. We called in my home healthcare nurse and she came over changed a wafer for me again. And you guessed it 3 hours later BAM, it broke again. By this time not only was I exhausted, frustrated, but my skin around my stoma was on fire and I was I n pain. Mark and my mom were trying to help me and they started calling around. The ostomy nurse with my home healthcare was out on Cancer leave herself. Called my colorectal surgeon and he told me to go to the ER.
So on January 30th here I sit in the ER again, I got through pretty quickly and they had no clue what to do with me, no one there knew anything about ostomy, it is amazing! So I was given morphine for the pain and laid in bed with no ostomy dressing on, yup nothing, that was a fun 24 hours, NOT! I was admitted and everyone thought I had a disease, no I Just needed an ostomy nurse. Craziest thing ever to be admitted just to get help that could have been handled outpatient. So Wednesday morning, FINALLY an ostomy nurse came and first off told me to complain about what I had to go through, this should not have happened. There is an extreme shortage of ostomy nurses and to be seen you have to be admitted, all the outpatient clinics are not working right now. So I spent two lovely days in the hospital, and she fixed me up and put me in a new system, not ideal, but it is holding strong. I had to stay until the next day Thursday, to be seen again and make sure all was holding well. Then $8,000 later I was released, well that is what the insurance was charged, for something that should have been handled out patient.

February 3 – Boarded a plane to Maryland to participate in the Penguin Pace 5K race and I had an AWESOME weekend, more story and pictures are here on my web page.

February 19 – Today I had a scope done of the rectum. Prep was not as bad or should I say painful as it has been in the past, a sure sign of healing, in my opinion. Once again I remember being wheeled into the room for the procedure and do not remember anything after, ahhhhhhh the joys of good drugs! My mom was there waiting for me after, Dr. Venk said it looked good, I believe he stopped short of saying I am ready. He wants to see the results of tomorrows CT scan, yes one more test tomorrow. At least I got to eat dinner tonight, fasted since last night, and then tomorrow fasting again for the CT.

February 20 – I had my CT Scan today at noon, I think this is my 5th or 6th since I was DX, so I knew the routine. Nothing to eat 4 hours prior, go in and then drink this yummy stuff, NOT! Then they stick an IV in me and go to the “Donut Machine”. Then the iodine gets injected and I get the warm feeling….but wait something weird happened, my lip went numb and it looked like I was punched in the lip. So guess what, I am now officially allergic to Iodine and will need to be premedicated for further CTScans.

February 21 – First results in from my Oncologist came in at 8pm, geez what hours they keep!
And he just gave me the all clear. Ok Ok Ok I am only 4+ months out from my surgery, but just to here the all clear was a blessing. He did say though that my Thymus Gland is a little enlarged and he wants to check it again in 2 months. I looked it up and not sure why it would be enlarged, but he told me it had nothing to do with cancer?! So I will believe him.
Now I just need to get the all clear from my colorectal surgeon that my reversal can be done and then I will be doing the BIGGER HAPPY DANCE!

February 26– Dr Venk called me, colorectal surgeon, today and he wants me to have a PetScan. He saw some scar tissue build-upon the CT and wants to be sure there is no cancer in it. What is a Petscan?! I have had two, this will be my third. The machine is very similar to a MRI machine. I go in at 8:30am, nothing to eat or drink 4 hours prior. They inject me with radioactive glucose, now doesn’t that sound wonderful. I have to sit in a dark room for one hour to let the stuff go through me. Then they make me go pee in a special bathroom marked radioactive, YIKES! Then I go in the “Tube” for the test. My body illuminates and a special color, not sure which one, shows if there is any cancer. So when I had it prior to surgery my tumor was glowing and no other part of my body. I should have these test results by Monday or Tuesday.

On a side note, I have decided to go to my final IRS training so I can become a full fledged IRS Agent, I missed the training in September, I was pre-occupied? The training will be in Portland Oregon, never been there to stay. I am excited and looking forward to it. I will there March 12th-30th and I hope to see some family while I am there. My ostomy reversal if approved will be in April.

March 2 -Petscan is done.
I also here from Dr. V today. Everything looks good, we can schedule the reversal. I already made commitment to go to Portland for work, my final training! So I schedule my reversal for when I return in April.

March 9 – Appointment with Dr. Calvacant, my oncologist. The Petscan came back good, no cancer cells. But he is curious, my Thymus Gland is enlarged?! He was not too concerned, wants to do a repeat Scan in a few months.

March 12– I am off to Portland for 3 weeks. I am a little nervous….being gone so long and away from my doctors. Iam feeling pretty good, I will do fine!

April 11 – I check into the hospital at 7am for my 4pm surgery. Surgery goes as planned, everything went well. I was up and walking tonight and felt pretty good.

April 13 – At midnight I feel little bubbles coming out, Yea!!!! Gas has finally come, things are working! I can finally have food!

April 15– Things seem to be working well, I had two meals and I seemed to have tolerated them well. I am sent home. Wow, can it be this easy? At home I do not have an appetite, my mom brought me a Jamba Juice and I nurse that the rest of the afternoon.

April 16 – I did not sleep at all last night…….and to top it off, one of the times I stumbled into the bathroom there was a scorpion, YIKES!!! MARK!!!!!!!!!!!! Come here!
All day I just do not feel right, lack of sleep? By early evening I call my mom, something is not right, she comes over and agrees. I am in pain and my stomach is distended. The decision is made; it is time to go to the ER!
We are taken back right away, my pain level was a 10 when we got there and they got me going on an IV and pain meds, I was in severe pain. X-rays and scans were done. I was evaluated by Dr. V.; I need emergency surgery and was marked for a colostomy on my left side. It is the 17th and I am in tears being wheeled into surgery, Dr. V comes and pulls me out, no surgery, there are other issues to deal with.

What happened is when the reversal was done they go into the site where the ostomy was, else is looked at. Well my CT was done the end of February, 7 weeks prior. Based on the scan done today a mass had formed in my pelvic region. My family was told that the cancer was back and everyone was in shock! A biopsy was done and 3 LONG days later we were told it was not cancer. My scar tissue was growing like cancer, bizarre! But THANK YOU LORD! So now what?

My kidneys were shutting down - the scar tissue was cutting it off.

April 23– Colonoscopy was done to relieve the pressure in my bowels/stomach and then sent back to my room to recover.
A few hours later the urologist came in and said he was doing the kidney stents that afternoon, had to be done! So I go under GA to have that done. Two surgeries in one day!

April 27– At this point I have not eaten anything since April 16th, 2007. I am on what is called TPN, it is IV nutrition. Being on this requires your glucose be checked every 4 hours and if out of line an insulin shot had to be given. Dr. V comes to me and tells me my choices. Alan and my brother were in the room with me. I can go home on TPN, I would have to be hooked up to an IV for 12 hours and the other 12 hours I could move around, but during this time nothing by mouth! Give it 2-3 months to see if my bowels can function and there is no guarantee. Or I can have a permanent colostomy with the removal of my J-Pouch and rectum.
I made the decision to receive a colostomy. The TPN situation just did not seem like a good option. My Dad has spent 28 years with an ostomy and lives one of the fullest lives of anyone I know, I can do this! I had to make this decision and I know not everyone was on board with me, but I moved forward!

May 1– I went into surgery that evening, it was a tough day for me emotionally. I made this decision but still I had such high hopes for my reversal!
Surgery did not go well….my pelvis was frozen; all my surgeon could do was give me a colostomy. My pelvic area was fused together by scar tissue and no scar tissue could be removed or the rectum/anus and j-pouch.

This surgery took more out of me then all of the others. Perhaps it was the fact that it was my fourth surgery in 2 weeks, the emotional setback of having the reversal fail, wondering if I made the right decision, all of it rolled up made the healing process slow down.
I stayed in the hospital for 2 weeks after recovering. The ostomy was working well! Emotionally I was trying to cope, it was very hard!

May 15 – I went home! It was strange going home, but felt good! And now the healing could begin!

May18-May 21 – I went to the mountains and soaked in the fresh mountains air. I felt 100% better after that trip!

May 25-May 28– San Diego! We had a perfect room and I could watch the ocean all day! I spent one day on the beach under an umbrella, my neck got red, whoops! What a fantastic weekend! Myself, mom, Jessica (her friend Stacy and Jen), Tom and Elva! Saw some ole running friends and my cousin Christopher!

May 31– I met with my colo/rectal surgeon. He talked more about my surgery and my frozen pelvis. He feels the scar tissue will stop growing and my pelvic area will settle down. However when a CT is done they will refer to it as a pelvic mass and look like cancer on the scan. He also said that I will need stents replaced every 3-4 months for the rest of my life and my bladder is compromised and cannot hold as much. Other then that I looked great and he released me back to work.
I also see Dr. Calvacant today and he orders a Petscan.

June 14 – Appointment with urologist. He confirmed what Dr. V said, I will need stents replaced for the rest of my life and my bladder is compromised because of scar tissue. He mentioned that a German doctor designed a stent that is metal and will last a year, it was just approved in the US, he has not done one yet I would be one of his first. As soon as he is able to do this type he will let me know. In the mean time we set up surgery for July 16th.
Later this day I have a Petscan.

June 20– Dr. Calvacant calls me; my scan was CLEAR, no sign of cancer!!!! And also the thymus gland is normal!

July 10– Hope and Healing support group, this group is all of Dr. Comerci’s patients; he is the Gyn/Onc. And we all were upset he is moving back to PA, sigh! I am fortunate because I have so many other doctors and my primary cancer is not GYN, so they say. I will miss him!

July 12– the heat is really getting to me, I just feel real fatigued. I did not workout all week, too tired by day's end.
Yesterday I went and had blood drawn for surgery on Monday and normal cancer screening for Captain Jack.
On my way to see Dr. Venkatesh today I picked up the results, Captain Jack (AKA Dr. Calvacant Oncologist) wrote a note that the results were great! And they were, tumor markers way below normal! My hemoglobin is at bit low at 10.8 and 11 is normal. I just can’t seem to get that up; I need to work on that.
So on to Dr. Venkatesh, he looked at my roadmap on my stomach and said all is healing well, pushed around the tum tum, looks great. He made it clear to me that my pelvic area needs to be watched closely with CT Scans etc and if Captain Jack does not order them then he will. We also discussed my pain/discomfort and the fact I need to take Percocet’s everyday, I actually break them in half, but over the counter stuff does not cut it. He knows that I need relief, he was inside of me and knows how messed up it is and how much discomfort I am in on adaily basis. But he says I am too young to be on percocets all the time, he wants to send me to a pain management specialist and perhaps explore the option of spinal injections. His office will set up an appointment for me. Dr. V does not want to see me back until December and at that time he will do a scope of my ostomy, wow 5 months!

PAIN: People always tell me I look good and do not look like I am in pain, I have always had a high threshold of tolerance, I had my kids with no spinal, I was more afraid of the needle then I was of the pain. My “New Normal” involves daily discomfort and I am learning to live with it and push on, I won’t let it stop me. Dr. V knows I need narcotics he knows I am in discomfort and I am glad he is concerned about it. So on the days I am “feeling good” my starting point is the normal discomfort that I have now and how much more discomfort I am in. Some days after work or doing errands etc I do tire and just crash at night and many times I need a full percocet, it is just my “new normal”. But would never consider not working, I love my job and it keeps me going and I love the people I work with! I am looking forward to working with a pain specialist and trying to find some solutions that will work long term.

July 16– Today I am having my Kidney stents replaced; it is done on an outpatient basis. Went into the hospital at 7am for my 9am surgery with Dr. Patel. I discussed the fact with him that the past week I have had blood clots and blood in my urine, he said that is a sign that the stents need to be replaced, so a good thing we are doing them today. So it seems mine last just about 3 months since they were done on April 23rd last. Procedure was done and I was home shortly after 11am. I was a bit uncomfortable tonight, but nothing I could not handle and my buddy percocet could not take care of.

August 18 – I have heard from several people “Why have you not updated your web page?” Well I guess it is a good thing that life is returning to normal right? I only have my blood drawn every 2 months now, so I will not have that done again until mid-September and that does make me nervous but I try not to think about it.

I did have a really good appointment with a Pain Management doctor on the 7th of August, Dr. McCauley. My Colo/rectal (Dr. V) surgeon sent me to him. Everyone one is in agreement that I have pain/discomfort and I do need something for that but Dr. V thought I was too young to be on percocet everyday and thought perhaps a pain pump or the like was necessary. At this appointment I gave him my full history and he too agreed that I did need something for pain. At this point he did not recommend a pain pump or spinal injections, he said the rectal area is a different location and he is not sure they would work, he said definitely not a pump and he would try some type of spinal injection if I wanted and see if it worked. He said if percocet is working then to stick with that. I take 3-4 percocets a day and usually I cut them in half and I can full function on that dose and it relives the pain. He gave me something called Kadian to try, it is a sustained time release and you only need 1-2 a day, they are morphine based. I did not have much relief with them; I still think my ostomy can’t handle time release. So I am staying with the percocet.

That about sums it all up for now, when I get my blood work done in September I will post again, and I see my oncologist on September 24th, 2007.

September 2h – On Tuesday 9/18 I had my blood drawn for the first time in 2 months. I keep a 99.9% positive attitude during the times between blood tests, then the day comes and the wait. That night I met with a small group and we gave ourselves affirmations and mine was “I am Whole, Perfect and Complete”, so I sang this affirmation until my Oncologist came into the room this afternoon.

He opened the door and I smiled and so did I, I just knew what he was going to say, all looks good! All blood tests were normal and all is clear! So good he does not want to see me until January 2008, WOW!!!! I do need to have a blood test done in 2 months and he wanted a scan done 4 months after my last one so that means in October I will have a full body scan.

My pain is under control and I have been feeling great! I am walking and biking as much as I can. I am SO Blessed!

October 16 – Yesterday I had my kidney stents replaced and all went well. I was in recovery a bit longer, just wanted to sleep I guess. My Brother Tom took me to the surgery and waited for me, what a sweetie. The doctor said they looked good and he does want them replaced in 3 months again. So all went very routinely.

I have been quiet about an aspect of my life; I guess it is not something that needs to be written in the headlines. I moved out of the house in the beginning of August and a few weeks ago Mark and I signed divorce papers. Not something I expected or wanted to happen, but it seems it was what had to be done. We are remaining friends during it all and working together on the details, if anyone has any questions just e-mail me.
I am excited about the future and the long life I will be living!

October 23 – Petscan done and results were NEGATIVE!!!

November 12 – Blood draw – result were great! All tumor markers were below normal; this is a very good thing, slight anemia.

November 15 – Ultrasound done to be sure I was not developing clots in my legs, why you ask?! No clots but I now have stage one Lymphedema. What is this, you can read more about it on this website, it is very common with cancer patients who have lymph nodes removed. I had 19 removed so my lymphatic system was very compromised and a pooling of fluids was taking place in my legs, especially at the ankles. I am extremely blessed to have a sister-in-law who is a Lymphedema therapist and she helped me get all set-up with the equipment. I must now wear compression hose when flying and when the swelling gets bad I have to wrap my legs with ace bandages. I have a self massage routine to do every night and it is strongly recommended that I get massages every week by a therapist that specializes in lymphatic massage, oh darn! :-) Stage one means it is controllable and it can be reversed, once you get to stage 2+ you may never be able to reverse the swelling. Just one more thing to add to my war chest of challenges I have. One thing that helps control it is walking, so training for the Half Marathon will be great!

November 17 – Making strides Cancer Walk – what a BEAUTIFUL day and we had a great team! I believe we had about 30 out walking……no wheel chair this year!

December 8 – Prep went ok for testing today, not pleasant! Colonoscopy through the stoma and a scope in the rectum, ALL clear!
Everything looked great and Dr. Venkatesh does not want to see me for a year, WOW

January 13, 2008 – TEAM LIZZY is off and running, what an incredible day! I DID IT! And Team Lizzy is ready to go on tour and surely ready for next year, please join us next year. You can still get the AWESOME TEAM LIZZY shirts!

January 14 – Had blood drawn on Friday and my FAVORITE nurse called me to tell me all CLEAR! All my tumor markers were below well below the normal max. God is GREAT!

January 16– Today was Kidney Stent replacement day…..all went well and looked good. I am a little bit uncomfortable, but nothing I can’t handle. Surgery again in 3 months.

January 24 – Appointment with Dr. Calvacant, blood work looked great, all clear! Still NED!!!!

January 27 – AWESOME trip to Hawaii took place! Had an incredible time with my bestest friends Diane, Kate and Tammy! I will get some pictures posted to my site as soon as I can!
Going to Hawaii and being three hours earlier took a toll on me coming home, I was tired and started to feel some lower back pain to the point where I could not walk with my walking buds at work, what is up?

February 8 – Found out what was up, I woke up this morning early with some lower back pain that was really bad, I popped two percocet’s and tried to go back to sleep, a few hours later something was really wrong, I could hardly walk and the pain was REALLY bad, I called my mom and she came over and rushed me to the ER. Well I finally figured out what it would feel like to have a Kidney Stent Fail, my right one did and I had PAIN on a scale of 1-10 a 20! I was pretty much in a drug coma for two days while they ran tests, scans, MRI’s and drew out blood, and I do not remember much about those two days. Sunday they did surgery to replace and reposition my stents and that did the trick. I also started running a Temp of 103 Friday 2/8 and Sat 2/9 which may or not been caused by all of this. Suffice to say I was released on Tuesday 2/12 and resting at my Mom’s until I regain my strength. I will return to work next Tuesday 2/19.

February 14 - It is Thursday, Valentines Day’s and I am feeling much, much better!

GOOD NEWS out of all of this – Still Cancer FREE!!!!!!! All the tests they did still came back no cancer in sight!

March 8-12 – Trip Washington DC, click here to see the page and pictures! Can’t wait to go again next year.

April 16 – Time for Kidney Stent replacement, oh joy! This one did not go as well, my right Kidney is just not doing very good and it is staying pretty infected or actually the word my doctor uses is "colonizing". I was sent home today with a catheter, now that was fun, NOT! We had to measure the output and input for 24 hours. Then the next day I had to remove it, WHAT, I am not a nurse, but it was not that hard.

April 23 – Went and saw a regular internist, my oncologist sent me to him. Something is wrong, but my blood work looks good, at least my oncology blood work. But I am very sluggish, tired, sleeping all weekends for the past month, gaining weight, almost falling asleep at the wheel (not good) and at my desk. So a full blood panel was done on Friday and I will get the results this Thursday. Could it be my thyroid? Or something else? My Kidneys taking a toll on me? Who knows, but I have to get to the bottom of this. One thing is for sure I am eating better then ever and I have been working with a Life Coach to get my body back in shape. I am also going to a sleep center on Thursday night, I sleep there all night and they hook me up to machines and see how I am sleeping. So all of this should give some answers to why my body is so tired!

I have not been as active on my mail groups because I really have not been on the computer much, I sleep, then sleep and feel tired then sleep and work.

August 10 - MY BAD! Long time in coming for this update!
WOW time flies when you are having fun?! Or should I say when all is good and going as well as it can be! I am packing for my Trip to Norway and I am getting excited! Not sure I am up for the daily hiking, but I sure have trained as much as I can even doing stadium steps and I am also allowing myself to just enjoy the scenery and sit out a hike if I need to.
I had my June stint replacement and all went well and I also had a Petscan and a Butt Scope and all came back clear. I am having some more then normal pain right now from the rectal area, but I am thinking it could be from al the working out I am doing. But my life now consists of worrying about some unusual aches and pains, at least more then the normal.
Germany came out with a metal stint that is supposed to last a year and my doctor has used it once and it did cot work, but for other reasons he said. He said he would try it on me and Hey perhaps it would last 6 months on me. But he did say that only if I had no infection, so he took a urine test and it came back positive for infection, DARN! I think that means no year long stint for me! Pooh Bears!

When I return from Norway I will be moving back into my mom’s house, this time for good and will be reclaiming my name of Dennis. This should all take effect my September 1st, I will send out address updates. It is a sad time, but exciting also, new beginnings……..

November 2008 – UNDY 5000 5K was A HUGE Success and we had over 1,200 people at the first annual race, WAY TO GO!!!!!!!!

December 2008 - Yearly Colonoscopy – ALL CLEAR, Nothing is UP MY BUTT!!!! Except for lots of scar tissue!

February 19, 2009 – Well as the Ole saying goes no news is good news! I have been strolling along in life and my cancer has been staying away!

My Kidney’s having been having tough, although I was in the Hospital in September and December with massive Kidney infections!

I do live with my mother now….however that is changing and I will be moving into Sesame Street in late March or April, this is the home I/we lived in from 1992-1997 and Jessica and Time live there now and just bought their first home and will be married in 2 weeks! Maybe now I will have my own place to settle into and spread my wings! First order of business is to build myself a meditation/yoga room and I am excited about that and even more excited to FINALLY have Marcus back, my wiener dog!

I was appointed to the Grassroots Committee of C3 (Call on Congress) and am going to DC in March to tell my story to members of Congress again and try to help and get this Beast under control! This year I’m a mentor/leader of 10 people! This year we have double the participants then last year! Please join the BUTT IN on March 31st,
Thank You for coming to visit my website and learning about me and my Journey!

Upcoming Events:

March 2009 – C3 Call on Congress and BUTT IN
June 2009 - Next Kidney Stint Replacement