Audible Dissent

So I have colon cancer, and I’m going to write about it. I have been holding off on writing about it or giving a real update until I had all of the information. I have learned that it’s not a good idea to give any information when there are still outstanding questions because it leads to a lot of questions that don’t have answers. That’s the reason I have been holding off. Having the information is not why I’m writing about it. I want to write about it.

I want to talk about cancer in a way I haven’t seen. I want to joke about cancer. I want to joke about my death. I am not dying. I suppose I could die. I could die in a car crash tomorrow. It’s not all jokes. I am terrified, but I also have general anxiety disorder. I was going to be terrified of something anyway. Might as well be something real.

I hate the personification of cancer. I am not the first to say this. I noticed this personification in our culture before I had cancer, but it didn’t bother me like it does now. I suppose it had nothing to do with me at the time. I have a disease called colon cancer. No reason to give it any more power than influenza or heart disease. There is no consciousness. I don’t need to take this personally. Cancer exists. I am a human being. I have cancer. If personification helps others in dealing with cancer, that’s great. I’m all for it.

So after that introduction, I wanted to give an update of where I am. I also wanted a place for me to reference this information as my treatment progresses. My mother and my sister in law, Barbara, attended my oncology appointment on Wednesday where my oncologist proposed his plan for treatment. My mother has been a nurse for most of her life and all of mine. She has been there for me from the beginning. Barbara is a pathologist and offered to accompany me through this process as an advocate and to provide context. I was going to put all of this information in my own words, but Barbara knows way more than I do about this subject. She also took great notes and wrote an email to my family. There is no better way to describe it. I have redacted part of her words – doctors names, etc.

Personification and faith bring me no comfort. That doesn’t mean I don’t appreciate the sentiment. Words of encouragement (including personification) and prayers are appreciated. I recognize these efforts for the care and love intended. I can really feel that love and care from so many people.

Science is a true comfort to me. Understanding. So Barbara’s description, and the relief I could feel from her as the oncologist described my current state and his treatment plan, affirmed my own understanding of his words and prompted my own relief.

Chemo is terrifying to me, but ya know, I’ve probably done worse to myself. Maybe… (It’s hard not to be superstitious.)

If you need the cliff notes version, I have a tumor on my liver that is the same cancer that was in my colon. I start chemo on October 4. Then every two weeks after that for two months. Then the liver surgeon will remove the tumor from my liver. Then I will have an additional four months of chemo every two weeks. The good news is that the tumor in the liver is operable and there is a good chance that I could be disease free.

Appointment today at MDACC with colorectal oncologist.

Review of CT scan from abdomen shows a solitary metastasis of colon cancer in the left lobe of the liver measuring approximately 3.5 x 4.5 cm surrounded by at least three smaller “satellite nodules” (very small <1 cm nodules that most likely are smaller metastases surrounding the bigger tumor). Tumor is in a location that can be easily removed, and is NOT near major vascular or bile duct structures, or “between” liver lobes as we were lead to believe by St. Joe’s physicians. 

The remaining CT scans of chest, abdomen and pelvis show no other signs of cancer.  Inflammatory changes remain in the area of previous colon resection and in the surrounding lymph nodes, but this is to be expected at only 4 weeks post-op.

Lab values: Hemoglobin 11.9 (slightly down from normal around 14) but to be expected post-op, liver enzymes ALL completely normal (very good sign) and elevated CEA (carcinoembryonic antigen, tumor marker for colon cancer) at 446.5 (related to liver metastasis still producing CEA).

Side-bar consult of Oncologist with Liver Surgeon: CT scans were quickly reviewed and Liver Surgeon felt liver tumor is resectable (either before or after chemotherapy) but both agree that giving chemotherapy up front is wisest, as getting the liver mass to shrink will be more advantageous at time of surgery.  Goal is to remove the liver metastasis and make Larry cancer free.

Chemotherapy plan:  

Larry will be receiving a very commonly used, well tolerated, first-line chemotherapy regimen used for metastatic colon cancer called Folfox and Avastin. The Folfox is a mixture of cancer fighting agents and the Avastin is an endothelial growth factor inhibitor that actually starves the tumor cells from making new blood vessels and being able to grow, recur, or metastasize.  This regimen has shown great success in treating metastases and in preventing tumor recurrence.  Further in-depth information about each is available below if you care to read more.

Therapy will be given once every two weeks with each cycle followed by rest period before the next.  He will go to MDACC to receive the main infusion on a Friday, then go home with a pump to deliver the remaining drugs over the next two days, and return to MDACC on the following Sunday to have the pump removed.  

The tentative plan to start will commence with his first cycle of chemotherapy delivered on Friday September 4.  The first dose will be delivered through a PICC line (peripherally inserted central catheter) in his arm.  After dose one, he will be scheduled for the insertion of a central catheter with a port that will deliver the chemotherapy directly into the large vessels of his neck and chest, leading to more efficient dilution and delivery of the chemotherapy to all vessels of the body.  The insertion of the Port-a-cath will be done under anesthesia, but is a very quick, routine surgery.  The port will remain hidden under the skin of his chest and will be used for delivery of the remaining chemotherapy dosages.  It is removed after all chemotherapy is complete.

Oncologist plans on delivering at least 4 cycles of chemotherapy (2 months) up front.  Then Larry will have repeat CT scan of the liver lesions to see if there has been a response (decrease in size of main mass, disappearance of smaller satellite nodules).  This will help determine the right timing for the liver tumor resection. A formal consultation with Liver Surgeon to go over the CT scans and proposed liver surgery will be forthcoming.

If all goes to plan, the liver surgery will occur after 4 cycles of chemotherapy (approximately December 2019), followed by at least 4-6 weeks of healing and recovery.  Then chemotherapy will be resumed for another 8 cycles (4 months) after healing to complete a total of 6 months chemotherapy.

Side effects of the chemotherapy can vary, and are highly dependent on each individual’s response.  Some of the most common side effects mentioned today by Oncologist include numbness and tingling of the mouth, feet, hands and throat (due to a peripheral neuropathy caused by the drugs), sensitivity to cold (especially the throat, should drink things at room temperature and no ice cream), sensitivity to sunlight and increased chance of sunburn.  Other more common side effects like fatigue, diarrhea, and ability to work seem to vary by each individual, and will be best judged after Larry experiences his own body’s response to the chemotherapy.  

I left the appointment today feeling very encouraged and positive about the proposed treatment plan and physician who will be leading the team for Larry at MDACC.  I believe that his care is in some of the best hands in the world, and that complete remission is his achievable goal.  He will need all of us over the next 6 months, but I am certain that he will have all the love, care and support he needs from a family that loves, treasures and respects him deeply. 

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2 responses to “Audible Dissent”

  1. This is good to hear. Very good. I know you have a circle of close friends offering amazing support but know you have the support (and yes prayers) of me and Randy – and the legion of Saints we asked for assistance from 😉

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