Disbelief

Some days I am amazed with what I learn about the cancer treatment world. There are many days I feel completely overwhelmed. Other days I am in disbelief. What I have learned in recent days finds me in the disbelief category.

When I was at Fairview last week, I was basically being forced by the hospital to go with the radiation center that is adjacent to the hospital for my treatment. (There must be a contract between the hospital and this specific radiology group.) I felt like my back was up against the wall and I was made to believe that if I did not go with this specific group of radiation oncologists, I would be making a bad choice in a critical decision. I had mentioned to the doctors that my wishes were to have treatment at CTCA. The response that I received from the group was nothing less than eye rolling and a threatening tone.

During the time in which pen was in hand and a contract to begin treatment was being forced upon me, I felt my entire body respond to the tactics. My blood pressure dropped, my temperature rose and my body was overcome with a physical response. Quite frankly, I felt I was about to code and begged the radiation team to wheel me back to my hospital room for observation.

Looking back, I now realize that something bigger than me was intercepting my care. Once my body had recovered from my subconscious response, I was forced to stand up for my own beliefs the following morning. It was the many angels that have been following me that had knocked me upside the head. They certainly know how to get ones attention when they need to! After experiencing the very strong 'ah ha' moment, I canceled all further treatment with the local radiation team.

When we arrived at CTCA on Friday we were educated on the advanced treatment options they have available. I also learned that CTCA is one of very few TomoTherapy practitioners available. Upon further research, I learned that the group in Minneapolis does not offer the therapy.

If I had not taken the time to recognize what the universe was trying to tell me, I would have begun my treatment back in Minnesota. The treatment would have taken care of my immediate pain, but it would not have helped me long term. The feeling of hope that I am now experiencing would never had occurred.

The part of me that is in disbelief is the fact that there are facilities that are aware of better and more advanced treatment options. Instead of sharing this information with patients in need, these facilities choose to do what is best for their bottom line. Sadly, the more I am learning about this industry, the more I am learning how prevalent these practices are believed and followed.

Lessons learned last week;

1. Follow and listen to ones gut.
2. Ask questions
3. Be your own advocate.

Surely you will run across similar situations during your daily struggles. Take the time to listen to what is best for you. The other guy has his own best interest covered.

Open Road

There is so much to be communicated. So many things have happened this past week. Quite frankly, I am having a difficult time trying to figure out how to compose an abbreviated version of the week and still have my words make sense. Add to that the fact that I am on time release morphine and dilaudid for breakthrough pain. Oh boy. Let's put it this way...I am asking for your patience as you attempt to decipher my words.

First things first. I have been released from the hospital. The doctors at Fairview knew they had to release me with their blessings. It was that or I would have bolted without their consent. That would have turned into undesired stress for all parties involved. I was released Thursday afternoon. There is no diagnosis or medical understanding as to what was causing my symptoms last week. The doctors are just as frustrated as we were. I was stable and gaining strength at the time of my departure.

From the hospital Dick and I went home and I packed for my planned one month stay in Illinois. I packed in record time. Ladies, can you imagine putting together clothing, shoes, lingerie and toiletries in forty-five minutes? I am still questioning how I had the energy and the ability to focus on the task. Before I knew it I was giving Bert, our adorable dog, yet another hug good-bye and we were on our way to Illinois. On schedule!

Dick and I met with the Medical Director of Radiation Oncology at CTCA Friday afternoon. He had an opportunity to review my CT's from the previous Sunday. He was in agreement with the Minneapolis radiologist. My pain is being caused by bone erosion due to cancer on one of my ribs. He advised that he could treat that site. By treating the site they would be killing that part of the bone, thus alleviating the pain. Hurray!

The above information is the same treatment plan that the radiologist in Minneapolis outlined. This is very good. With that, this is where things become very confusing. The doctors at CTCA want to treat the bone as well as zap the tumor that is adjacent to the eroded bone. What? Say that again? You can treat the tumor as well? The doctors answer 'yes'. My thoughts begin to rush. You can see Dick's brain working in the same direction as mine. If you can zap that tumor why can't you zap the others that are in my lung as well? The doctor's answer 'we can'. 'The problem is the cancer growing in other parts of your body.' But doctor...there isn't any other cancer. Just these tumors giving me trouble in my right lung.

When Dick and I left CTCA early Friday evening, we were both of the understanding that the radiation therapy available at this facility has the ability to eradicate the tumors. Can you imagine the gamut of emotions we were feeling at this point? Number one...why wasn't this offered to us by the radiologist in Minneapolis? We're confused.

I return to CTCA Monday for a defined treatment plan. I will be measured, tattooed and have a mold created to protect my chest area during all of my radiation treatments. The length and duration of my treatments will be decided at that time as well. The doctors will also be able to tell me if Dick and I were fantasizing or if we really did hear something as amazing as my tumors being completely treatable.

The Vitamin C treatment that I had planned to begin again is being shelved for the time being. Our focus right now is the radiation and alleviating my pain. We will revisit Vitamin C at a future date.

So gang, we will all be learning about radiation treatments to the lung together. Let's keep our fingers and toes crossed. When the doctor confirms what we think he communicated to us on Friday, I will go into greater detail a story about following ones gut...literally.

Thank you for your prayers and concern this past week. Aside from the effects from the pain meds, I am quickly regaining strength I have not enjoyed in quite some time. I do believe the blood transfusions may be adding a bit of a skip to my step.

As my good grade school friend, Sue, expressed in an email to me earlier this evening....You have MANY angels looking out for you, dear girl! Indeed I do!

Road Blocks

I am still in the hospital. When I was initially admitted on Sunday, it was due to pain and constipation. From there, it was upgraded to the three P's. If only it were that simple.

Somewhere between Sunday and Tuesday, the three P's became less of a priority. It appears my body is fighting something. The professional community is at a complete loss as to what has taken over my body. I have been running a steady temp. It has spiked up to over 101 degrees, which is high for me, as my average temp is in the 97's. Add to that the fact that my blood pressure is lower than my average of 100/70. It's been as low as 70/50. (A person feels pretty lousy when it gets that low.)

Due to the concern about fever and blood pressure, I am being pumped with antibiotics, copious amounts of fluid and two units of blood. I've had more blood draws than you can imagine and a echocardiogram. I'm sure I'm missing a few things in there...but you get the idea.

The plan was to leave tomorrow for Illinois to begin my next round of vitamin C treatments. Until I have my pain under control and the specialists in infectious diseases have figured out what is causing havoc in my body, that plan may be shelved. We have decided we want to complete my radiation treatments and continue with the infusions at CTCA. The difficulty is getting my doctors here in Minneapolis to agree to my travel without answers to their current concerns.

In a word, this week has been frustrating. Okay...two words. Frustrating and scary.

Updates will follow. I am very aware there is a high level concern and wanting to know 'what's up'. I wish I had more to tell you.

I know that there are many wonderful prayers and positive intentions being sent my direction. Please know that I appreciate the time that you take to think of me and the energy that you provide.

Detours

Typical Monday morning conversation; So...what did you do this weekend? My response would be 'I tried to control the pain that has been continuing to build. On Saturday, Dick and I ran errands. I should restate that. Dick ran errands. I sat in the passenger seat and watched him run in and out of stores. Saturday night I found myself very restless and without sleep. The pain that I had been experiencing in my rib area turned into spasms. Add to that the gastrointestinal problems I am experiencing from the pain meds I had been taking...I had a 'trying' weekend'.

When one lacks sleep it is difficult to think straight. Many things run through a worn and weary brain. My thought process concluded that I was experiencing liver or kidney problems, as the pain I have been experiencing is in that area. All I know is I was very uncomfortable. Sunday morning greeted Dick with me in tears and asking that he take me to the emergency room.

The emergency room decided a CT scan was in order. The results came back with what appears to be erosion of the bone between ribs 9 and 10 on my right side. Bone mets. It has been confirmed with me that erosion of bone is uncomfortable and painful. It's nice to know I'm not a wimp.

From the emergency room I have been admitted into my very familiar room at Fairview Southdale. Room 819 is going to be known as my signature room. I am going to start decorating it and adding my own personal touches to it soon. Funny...but not so much. It's a private room. That is always appreciated.

Right now the focus is to get my pain under control using various forms of morphine. We are also working on getting my intestinal disturbances under control. From there discussions will be taking place with regards to a treatment plan regarding my rib area. The word 'radiation' was thrown into the conversation yesterday. Ugh! As the next few days unfold the plan will become clearer. Right now we are dealing with the three P's....pain, poop and plan.

It's been a difficult twenty-four hours. I feel as if the wind has been knocked out of our sails. We had been living with such high hopes as we felt the Vitamin C infusions were assisting me in turning the corner. I'm not ending that part of this fight...just taking a bit of a detour.

It's Working!!!!!

I am in the final week of the four week trial here at Cancer Treatment Centers of America in Zion. Have you heard? We have reason to celebrate!!!

Last week I was experiencing rather extensive back pain and spasms. The doctors wanted to run a CT to rule out a few of their concerns. Although the CT did not give answers as to my back pain, the scans did show tumor reduction! I received the great news right before leaving for the 4th of July holiday. We're all extremely happy around here.

Dr. Stephenson sat with me this morning and explained that the largest and fastest growing tumor in my right lung is showing great response to the Vitamin C infusion. In his words, the tumor is showing necrosis. Basically, the tumor is dying from the inside and any blood supply is quickly being cut off due to the Vitamin C.

We are still working out the 'what next' details. They have invited me back for the next phase of the study. They would like me to take a month off. At that time, if there is not significant change in tumor growth, I will be a guinea pig for another four week experiment. Seems worth it to me!!!!

Isn't that some of the best and most incredible news you have heard from me in a long, long time? My big tumor is dying!!!!

Blessings to all of you. You have played a HUGE role in this and deserve your own congratulations and celebration!!!!

Oh....and I think I figured out the back pain. Please don't refer to me as the Princess and the Pea or Goldilocks..... The bed that I have been sleeping on is too soft.