This is the final act in my Dad’s journey with cancer. It began in 2013 with a diagnosis of Non-Hodgkins Lymphoma. He survived 6 months of chemotherapy to be told he was in remission. Then 5 years later, in March 2018, he was diagnosed with a recurrence of the same cancer.
In my last post on my Dad’s journey I shared all the ups and downs and twists and turns the previous 6 months had brought. It ended with all of us very hopeful about his next step in treatment. He had qualified for a Clinical Trial at Stanford University to try CAR T-Cell Therapy.
At the beginning of May my Dad had traveled to Stanford to have his T cells removed. The plan was for him to return in a week, undergo 3 days of chemotherapy to weaken the cancer and prepare his body to have the re-engineered T cells transplanted back in. He would then remain in the hospital for at least another week under close supervision to make sure his body was responding properly. After which he would be discharged but would need to remain close to the hospital for another 4 weeks with twice weekly check-ins.
My Mom had essentially moved them to Stanford. She was set-up in a long-term residence hotel with the plan to move to a Stanford apartment (available to patients going through treatment) once my Dad was discharged. Unfortunately they never made it to those apartments.
Before my Dad was scheduled to return to Stanford he started having issues with his kidneys again. He was admitted to his local hospital with coordination from the physicians at Stanford to be started on IV fluids. They ended up transferring him by ambulance the 2 hours to Stanford so they could keep a closer watch on him.
He gradually improved and his kidney numbers eventually got to a place where they felt they could safely give him the 3 days of chemotherapy. Initially, he tolerated the chemotherapy well, implementing his fasting & ketogenic diet again, and happily told every nurse or doctor that came into the room how his “Dietitian Daughter” had him on this plan and that they should really check out my website. 😉 My biggest fan all the way to the end.
A Turn For The Worse
Unfortunately within 2 days of finishing the chemotherapy his body started declining…quickly. This was over the weekend of May 11 & 12. My Dad was in and out of consciousness at this point. My Mom felt like he was slipping away and was tearfully giving me updates over the phone. They were monitoring him closely and doing different tests trying to figure out what was happening without any real answers until Monday May 13.
Here’s what they discovered. Although his original site of cancer had not responded to the RICE chemotherapy that was given back in March & April, this new cocktail of drugs had a very different effect. The tumors in his shoulder completely dissolved. Although this should have been fantastic news it unfortunately flooded his already weak and compromised body with dead cells and tissue. This is known as tumor lysis syndrome. This in combination with the chemotherapy was too much for his kidneys to process and they started to fail.
After an ultrasound on Monday they also discovered that his lungs were filling with fluid and his liver was beginning to fail too. A blood test showed 2 different bacteria causing sepsis in his blood. They tried to treat him with antibiotics and several different medications but without any improvement.
By Tuesday afternoon, May 14, the doctors recommended transitioning my Dad to palliative care. They did not think there was anything else they could try. At this point he was experiencing enough organ trauma that even if they could keep him alive he would not come back with the same quality of life and would no longer qualify for the CAR T-Cell Therapy.
He arrived at Stanford only 2 weeks prior with the utmost hope for cure and so quickly the reality turned to preparing for his death. We all knew the risk. He was prepared to face his death and knew this clinical trial was likely his last hope. We all recognized how much he had already gone through and didn’t want him to suffer any longer than he had to. No matter how prepared you think you are for this moment, the reality is very different.
Although my Dad couldn’t talk at this point he was still in and out of consciousness. My mom and sister gathered around him along with my aunt (my Dad’s sister) and cousins and I got on the phone to talk to him one last time. He lit up when he heard my voice and smiled. I told him how much I loved him. What an incredible Dad and Grandpa he was. How I will miss him something fierce but will continue to carry his spirit with me in all that I do. My family held vigil in his room the remainder of the week.
I was able to book a last-minute flight to California and arrived late Friday night, May 17, landing just one hour after my Dad passed. My sister picked me up from the airport and we went straight to the hospital. Although I didn’t make it before he died there was incredible comfort in getting to see him and feel his presence in the hospital room. We stayed in the room with him until 1:30am. We cried, we laughed at funny memories, we sent him off with all the love and strength we could muster for his spirit’s next journey.
Listen To Your Heart
For the last year and a half we have been focused on my Dad’s healing and recovery. Bringing in all the strategies and therapies we could. Making difficult decisions around treatment and trying to navigate the best possible path for my Dad. He used integrative therapies and conventional therapies. He prayed for wisdom and listened to his heart.
There are no regrets on this journey, although admittedly my first reaction was anger. It was difficult for me to not feel anger towards the chemotherapy. Knowing there’s a really fine line between this “poison” killing off the cancer and offering the hope of remission OR damaging too much of your body and causing death. When you’re navigating this complicated journey it’s really important that you make informed choices, that you weigh the risk versus benefit, and really listen to your heart about what the right choice is for you.
Now we are facing the final act of this journey. My Dad faced his final act which was transitioning towards death. Our final act is grieving the loss of someone we deeply loved and cared about. I have lost other family members I cared greatly for; both sets of grandparents and my uncle. But this is my first time grieving someone in my tightest most inner circle of being. And I am the first to admit that I am definitely in un-chartered territory.
To Grieve Deeply Is To Have Loved Deeply
It is because of love that we grieve. And although nobody wants to face the pain of loss, I know that for me I wouldn’t trade not having loved in order to avoid the pain.
As I navigate this new territory, here is what I have learned so far. The loss of a loved one has to be life’s most stressful event and for many can cause a major emotional crisis.
There is no one right way to experience loss. A wide range of emotions are totally normal; denial, disbelief, anger, confusion, shock, numbness, sadness, guilt, despair, etc.
Mourning is the natural process we go through to accept a major loss. Mourning may include religious traditions honoring the dead or gathering with friends and family to share our loss together. We spent all of last week deep in this process with a beautiful memorial service last Friday May 24th honoring my Dad and all the wonderful memories we had of him. Hundreds of people showed up and shared their stories and love for him. He definitely touched a lot of people’s lives.
Grieving is how we express this loss. Grief can be expressed physically, emotionally, and psychologically. Crying is a physical expression, while depression is a psychological expression. It is so important to give ourselves permission to express all these feelings and as I felt both at my Dad’s memorial service and spending the last 2 weeks with my mom and sister, there is real healing in being able to grieve with others.
Physical symptoms will often accompany grief. Stomach pain, loss of appetite, intestinal upset, sleep disturbances, and loss of energy are all common symptoms of acute grief. Of all life’s stresses, mourning can seriously test your natural defense systems. Existing illnesses may worsen or new conditions may develop. Although it may be hard to do, this is not the time to start slipping on your own personal self care.
Coping With Death Is Vital To Health
The most important thing I’ve learned so far is that there is no “right” way to grieve. Everyone is different. What matters most, is that we give ourselves time to experience our loss in our own way.
Often, death is a subject that is avoided, ignored or denied. Although at first it may seem helpful to separate yourself from the pain, someday those feelings will need to be resolved or they may cause physical or emotional illness.
Here are some steps I’ve learned we can take to help us move through the grieving process in a nurturing and healing way.
- Feel the loss: Allow yourself to cry, to feel numb, to be angry, or to feel however you’re feeling. It hurts, but it’s natural and normal.
- Attend to your physical needs: Get enough sleep, eat a well-balanced diet, and exercise regularly.
- Express your feelings: Talk about how you’re feeling with others. Or find a creative way to let your feelings out. This could include art, music, or writing in a journal.
- Maintain a routine: Get back into your normal routine as soon as you can. Try to keep up with your daily tasks so you don’t get overwhelmed.
- Avoid drinking alcohol: Alcohol is a depressant that can affect your mood, so it could make you feel even more sad.
- Avoid making major decisions: It takes time to adjust to a loss and get back to a normal state of mind. Making an impulsive decision as you’re grieving could add more stress at an already difficult time. Try to wait a year before making a big change, like moving or changing jobs.
- Give yourself a break: Take breaks from grieving by participating in activities you enjoy. It’s okay to not feel sad all the time. It’s good for you to laugh.
- Ask for help if you need it: You don’t have to struggle. Seek out friends, family, clergy, a counselor or therapist, or support groups. If your symptoms aren’t getting better or you feel like you need extra help, talk to your doctor.
I have been told that I will probably start to feel better in 6 to 8 weeks but the whole process can last anywhere from 6 months to a year. I may feel better one day, but worse the next day. This is all normal.
I have also learned that although the sadness and other emotions that stem from the loss of someone we love may never completely go away, grief and sadness that remain severe, overwhelming, and lingering may mean that we are stuck in mourning, a characteristic of complicated grief, and this can affect our functioning in daily life.
When we experience lingering, pathological, or traumatic grief we may need to seek professional services to overcome our emotional pain. There is nothing wrong with this. Sometimes we just need the extra help.
Take The First Step
After a long and complicated cancer journey, my resilient and always hopeful father passed away on Friday May 17, 2019. I’m not sure what it will say on his death certificate but I believe his cause of death was the result of a long and tiring treatment journey that ended up being more than his body could manage. Unfortunately this is what we feared all along, which is why we were so concerned with him jumping into conventional treatment in the very beginning.
In retrospect, maybe we should have resisted doing the RICE chemotherapy that severely weakened his body. Or maybe we should have resisted the increased dose of chemotherapy way back in December. Or maybe we should have pushed my Dad into doing the Stem Cell Transplant at the very beginning of his recurrence diagnosis. Or if we had done that maybe he would have died last year from complications.
You see where I’m going here. There is no gain to playing the “what if” game. We never know for sure what will come from each of the decisions we make along this journey. All we can do is gather a team of experts that we trust, be open and honest about risks versus benefit, and really listen to our heart about what the right path is for us. It won’t look the same for everyone. It’s your path. It’s your journey. And it’s your choice.
Here’s what I do know. There is A LOT you can do to support your body through this journey. There is also A LOT you can do to prevent cancer from forming in your body.
After my Dad went through his first round of cancer I wish I had known then how important it was to look deeper into root causes. We could have been working more proactively on the Epstein Barr, the parasites, nutritional deficiencies, and anything else that may have influenced his cancer returning.
This is something you can do. You can bring in a nourishing anti-cancer diet and lifestyle. You can take steps to uncover your possible root causes and apply strategies to remedy them. You can help your body heal. And you can take steps to prevent the cancer from returning.
If you’re ready to stop searching for answers on your own and gain the support & guidance of a trusted professional, the first step is to book a free 20-min “Planning Session” where we will review your diet, your lifestyle, your cancer treatment plan, and begin to map out your best recovery strategy.
Click here to book a 20-minute “Cancer Recovery Planning Session”. I would be honored to support you on your journey.