Wednesday, May 20, 2009

Next Steps

These past days have been very emotional. I found I used my hospital stay to cocoon myself and hide from the reality of my world. Now that I am home, I have had to face some rather difficult decisions.

Dick has been after me to make necessary phone calls. He has the heart wrenching job of having to push me through and return me to our reality. He basically begged me to talk to Doctor Chris at CTCA. I followed his wishes and did so today.

Dr. Chris is generally a very upbeat, optimistic and hopeful practitioner. Today I heard fear in his voice. In few words, he expressed to me that the cancer was winning over. If we were going to do anything proactively, we would have to do it within the next two weeks. Personally, I was really hoping to recover from my most recent surgery before having to chase the next set of procedures. From what I am hearing, I do not have time for that.

The team at CTCA will not know exactly what I will be facing until I get there. From what Chris has shared with me, they seem to feel they can remove the tumors that are growing in my pelvic area. With that, they will need to provide another form of radiation to the area that branching out into my right leg.

Where did this all come from? How did this all happen so quickly? I was living so lightly and had a sense of freedom from this beast. Now all I can do is think of the torturous ending it has awaiting me. I try to hide my tears from my loving and ever vigilant daughter, Eileen. She is constantly at my side and sees the pain and fear growing within my eyes. I don't know who needs more support right now, her or I?

This is so unfair for a twenty year old to experience. She needs her mommy. I must overcome. I will fight this next battle.

Monday, May 18, 2009

I wish there we better news

My surgery has taken place and I have returned to the comforts of my home. I am doing as well as can be expected. There is still a lot of time in bed and very little activity. Right now, I am healing, healing, healing.

The surgery was a success on one part. Unfortunately, it did not do what we hoped we would accomplish when we went into this phase of the journey. The hope was that if we created a colostomy, the doctors would be able to remove the scar tissue and newest tumor from my anal tract. They were both causing me excruciating pain. The goal was to alleviate that pain and provide a fuller life. While they were in there, they planned to remove the balance of my anal tract and rectum. Remove any ability for this damned evil squamous cell to spread.

The morning after my surgery, Dr. Nemer entered my room and explained to me that they basically took a look at the situation and closed me up. They did provide the colostomy to alleviate the pressure that had been building from my colon and then onto the scar tissue. Unfortunately, they found that the tumor had grown much more than they had anticipated. Not only did they find much more tumor in the anal tract, but also found more spreading down through my vagina and spreading with little fingers into the upper part of my right leg. They decided it would be best for me if they did not remove any of the tumor, as they felt if they did not get it all, the cells that were left behind would spin out of control throughout my body. This surgery was much bigger than they ever anticipated.

You can only imagine the disappointment. I did not want to talk about. My dear husband wanted to get on the phone and start working on the next series of surgeries and treatments in this journey. I am so worn out...I just can't do. All I want to do is silently cry inside and heal, heal, heal.

I asked Dr. Nemer what my next set of options would be. He really did not have answers. He suggested blocks to alleviate the pain I continue to endure from the tumors. He did not have the answers as to the cancer that is spreading down into my leg. He stated that eventually I would lose circulation to the area and most likely require amputation of that leg. Once I heard that, I really wanted to just hide and not deal with what had been dealt me. Basically, he had no answers.

Dick has been communicating with our dear, Dr. Chris, at Cancer Treatment Centers of America. I have not been able to pick up the phone and speak with him myself. I know that I will not be able to speak the words that need to be spoken. I know that I will only be able to sob I am doing now. From what I can tell, from Dick's conversations, CTCA's hope is to be able to completely remove the tumored sites in the pelvic region and then once again provide radiation treatment to the leg area.

I just keep asking for time to heal. I am not a super hero. My body has been through so much. I know that this is a fast growing cancer. I know I need to get on top of this and become involved in the planning of the next step of treatment. I just know that the next step will require more time away from home. More time away from my dear family. More time away from my comforts. At what point does one say enough already?

Generally, I do not ask for speific prayers. At this point, it is very obvious what I need from all of my wonderful supporters. My doctors need vision to see what will assist me in complete healing. My family needs strength to accept what each day brings. Personally, I need the feeling of angels surrounding me, as I feel so alone and lost right now.

Thank you for lifting me through surgery. I was a star patient for all of the nurses and doctors at Fairview Southdale. I know that you were there, providing the support and strength that I needed, expecially those first challenging days.

Tuesday, May 5, 2009

The Ride Continues

It has been some time since I have updated my blog. I have been putting it off. I feel that what I will be posting will be letting so many people down. Last I wrote, I was given a six month reprieve from scans and tests.

Shortly after my clear scans, I began to feel the same pain I was experiencing that brought me to the hospital July 22, 2006. A little voice was whispering in my ear to make an appointment with my gastro surgeon. That was Thursday, March 19. At that appointment it was confirmed that the cancer that I fought close to three years ago had returned to its original site. Not near the original site. On the original site...right on top of the scar tissue. I have been told that this is very unusual. Of course it is!

From there I met with the surgeon at Cancer Treatment Centers of America in Illinois to get a second opinion. The doctor at CTCA concurred with Dr. Nemer. I required a colostomy. He also advised that if I did not have this surgery, I would die of one of the most terrible and painful deaths known in the cancer world.

No problem. I have a trip planned to Mexico. Decisions will be made upon my return April 12. to Mexico I go. We are enjoying our trip and putting the cares of the world out of our minds for a few days. Unfortunately, that did not last long. While in a foreign country, I developed a vaginal fistula. (If you do not know what a fistula is, Google it, I'm not going into detail.) Off to a Mexican emergency room I go. I just can't seem to get a break!

You may ask, how the heck does a woman develop one of these? Pretty simple. Go through lots of pelvic radiation. The fallout (literally) from treatment in 2006. It is not painful. It causes inconveniences in my life....and I wear more perfume than I normally would.

Back in Minnesota, I once again spoke with Dr. Nemer. He suggested I have an MRI. He wants to make sure there are not other pesky cancer cells eating away at anything else in my abdomen; liver, pancreas, bladder, etc.. Sure enough, the results come back. It looks like the cancer has spread to my bladder. I believe that was about the time Dick and I hit the wall.

One thing I'm leaving out... My daughter, Eileen, broke her hand while I was in Mexico. She fell down stairs and caught herself with her dominant hand. She broke the most difficult bone there is to break in the body. During all of this, she also requires surgery. Yes...this is the point where we all said NO MORE!

The urologist comes into the scene now. He needs to see if there is indeed cancer in my bladder. If that is the case, on top of the colostomy, I will also require surgery on my bladder and redirect my urinary tract. He was very kind. Dr. Utz explained that what he saw on the MRI did not look promising for me. During my exam he prayed with me. He found nothing. What was showing on the MRI is possibly scar tissue. I love it when doctors give me big hugs. He cried thankful tears with me.

Whew...let's get this surgery scheduled and get the show on the road!!!! Oh, how I wish it were that easy. On April 23, Dr. Nemer comes back into the picture. He wants to have a lenghty conversation with both Dick and me...not just me. He wants Dick to understand that this is a life changing surgery. He also explains to both of us that he is not sure if the colostomy is feasible. He needs to examine me one more time to make sure my various levels of skin in the pelvic area have not melded together from the radiation. (Are you learning with me? Radiation causes some pretty bad stuff a few years down the road!)

Upon exam, he is very pleased to learn that my 'plains' are separate and in good condition. The surgery is now a go! Unfortunately, it will take about three weeks for the 'team' to get scheduled. Evidently there are several specialists involved and it is very extensive. The scheduled date is this Friday, May 8th.

I have felt so selfish asking for constant prayers and support in the past. I just could not write prior to this. I feel weak and vulnerable. This update is forced. I have a minimum of a four to six hour surgery awaiting me this Friday. These last weeks have depleted me. I need your help. We all need your help. This has been very difficult for my family.

So, once again, I humbly ask for your prayers and support. You have lifted me with so much wonderful energy and love in the past. Anything you can send my way at around 3:30 p.m. Friday would be more than appreciated.

With deep love and appreciation,