Edit “How to explain to family”
We took this photo and sent it to our kids. We were trying to keep the positivity going. This was at Panera where we grabbed coffee prior to our scheduled appointments to “meet the team” to discuss our treatment plan. Mind you, we thought we were going to this meeting in Rancho Cordova because he was a good candidate for robotic surgery, which would mean less radiation and no chemo. We had only talked to Dr. Whang over the phone with the biopsy results and had not seen the CT Scan yet.
Well- the whole experience with the “treatment team” turned out to be a shit show.
The strategy was in one visit, we would meet each member who would have a part in our treatment and recovery. The surgeon, the radiologist, the speech therapist, the nutritionist, the social worker. Well, that’s the order we SHOULD have met with but that didn’t happen due to scheduling issues.
First we met Dan Santo a speech therapist. Dan came in with a joke right away, and a friendly demeanor that both Kevin and I appreciated. Within the first 3 minutes, he realized that we had not met with the doctors yet. He said that is unusual so he talked in a broader way about the treatment and possible effects of the throat cancer. He showed us the exercises Kevin will need to do in order to recover his speech and ability to swallow. Yes- he may lose his ability to swallow along with many other things. Dan gives us the contact info of therapists in Modesto Kaiser, but said we could still reach him via video appointments if we wanted to meet with him. We like him and will probably do that.
Next was Michele Lites, the nutritionist. Michelle is a very nice lady who would have been a wonderful person to meet except she was pretty much set up for failure. Sharing this info I do not want anyone to think we hold her accountable for what happened next. Had we already understood the reasons why, we would both have had many questions for her. Instead, as she started explaining the importance of the feeding tube, and the effects of radiation for 7 weeks and chemo on my husbands throat, the look of fear and panic on our faces made her pause. She said she could see we were overwhelmed by the info. My husband asked her if this would be necessary even with the robotic surgery. Then the look on Michelle’s face was one that almost mirrored our own. She then asked, “You haven’t met with a doctor yet?” No, we had not met with the doctors yet. She tried her hardest to hold it together and finish the appointment, but we could see she had tears in her eyes. Obviously, she should not have been put into a situation of doing her job, which is to explain the importance of a feeding tube, prior to us discussing with the doctor the recommended treatment plan. As she finished up, she gave us the card and contact info of the local nutritionist in Modesto but assured us we can contact her if needed. She then put her hand out to shake our hands. Kevin reached over with both arms wide open and said, “You need a hug. I want to hug you.”
At one of my husbands lowest moments in his life, he reaches out to console Michelle and make her feel better. That is my husbands heart right there. That is the man I am madly and deeply in love with. That is my hero.
After Michelle leaves, we are left sitting in a small exam room, waiting for answers. Questions are zooming around our heads. Why cant they do surgery? Is the tumor too large? Has it spread? Suddenly, the room felt claustrophobic. Kevin breaks down at one point. I calm him down. A few minutes later, I breakdown and now he calms me down. Kevin has always been a pacer. He suddenly needs to pace but the damn room is too small.
We wait almost an HOUR before finally seeing the surgeon. More than once I tell Kevin, let’s leave and drive to UCSF for a second opinion. Oh hell. How would it be a 2nd opinion when they still haven’t delivered the first opinion? They wanted us to meet with the social worker who helps set up the state disability and makes sure we understand our co-pays and deductible. I told the staff who check on us, that we wanted to meet with the doctors first. We still have not been explained what the cancer looks like, and want to know what the treatment recommendation is.
Finally Dr. Jack Russo comes in the room. It feels like he is bothered because he is seeing us in between two other patients on his schedule. He has fallen behind on his scheduled appointments and now the nurses are insisting he meet with us because we are obviously distraught. That is my take on the situation but not Kevin’s. He didn’t notice anything.
Dr. Russo explains that the size of the tumor is pretty large. It is taking up the entire tonsil and pushing against part of the lower tongue. Thankfully, it is not IN the tongue though. With surgery, they take the tumor and an area around the tumor. This would mean they would take part of the lower tongue and a portion of the soft palette. Additionally, 6 weeks of radiation would be necessary because one of the lymph nodes near the tumor seems to be involved. They do not recommend surgery because it would require additional surgery to repair the soft palette to repair his speech. He also pointed out that this kind of cancer, HPV 16, is extremely receptive to radiation, and surgery would cause more damage than needed. We won’t be needing a surgeon, but says we can contact him if we have any further questions.
Next came Dr. Natalie Nguyen, radiology & oncology, comes in to explain the radiation and chemo plan. She gives us additional info on the HPV 16 cancer. It is highly curable, 90% with radiation and chemo. She also tells us that a year ago, this would have been classified stage 4 cancer. In the last year though, they have separated HPV caused cancer from the other type of throat cancer commonly caused by smoking, and this would most likely classify as stage 1 now. She recommends he tries to add a few pounds prior to start of treatment. She says he will lose 20-60 lbs during this treatment. She firmly recommends the feeding tube. I asked abut incorporating CBD oil into his treatment and recovery. She shrugged her shoulders and said Kaiser would not give us a prescription for that and there is no proven studies to show if it really works. She gave us the contact info of 21st Century in Modesto where we would be getting treatment but assured us we can contact her if needed.
We then meet with Carol Martin who gives me info on how to set up disability, makes us aware of the co-pay and tells me to reach out of we need any additional financial assistance. I personally really like Carol. She has a good sense of humor and I felt comfortable asking her some financial questions regarding our personal business and situation. She gave us the card and contact info of the local social worker in Modesto Kaiser but assured us we can contact her if needed.
With an explanation, we can start to make sense of the treatment recommendation. We can start to see though, this is not an easy fight. This is going to be the hardest thing Kevin has ever experienced and we leave there feeling extremely frightened.
We cry a few more times on our way back to Modesto. We call a few friends and family to update them. We keep it positive. We decide to face this fear with positivity but we are honestly so scared to death. The extreme anxiety of waiting for over an hour to find out “why” took a huge toll on Kevin’s emotional stability. He suddenly cries multiple times that afternoon and evening.
Hear is my biggest questions. WHY THE HELL DID WE DRIVE TO RANCHO CORDOVA TO MEET WITH MULTIPLE PEOPLE WHO WILL NOT BE OUR TREATMENT TEAM?
Thank god we met Cathy, the breast cancer coordinator in Modesto Kasier. After getting home, I included her in the “positive” group update on Kevin treatment plan. Inside, I felt terrified and did not trust that my husband had a well thought out treatment plan. Cathy messaged me back immediately with words of encouragement and support. I told her I felt lost and had questions about the treatment and really didn’t know who to ask and what was next. She invited us to meet her the following morning to discuss what we were in for, answer any questions, and guide us who to request for treatment. I sat on my couch and pretty much sobbed. The following morning, Kevin was still emotionally a mess. After meeting with Cathy for an hour, we left feeling tremendous relief. We finally felt like we had a local treatment team we could depend on, even though we have only met one, Cathy.
I’m guessing that was supposed to be the point of the Rancho Cordova meeting. Only their execution of the plan was bungled from the start by mismanaging our appointment sequence.
Cimoli Strong 