It has been a long time since I have come to the blog and posted anything. As they say, life changes and the time you have available as well as your priorities may alter as time goes on.
I have been contemplating how best to verbalize some of my thoughts of the events over the past 19 days. There are two primary characters involved in these events, one is my mother Ida Baker and the other is The Ninja (more commonly referred to as Anaplastic Thyroid Cancer). The rest of our family were only mere supporting actors in these events, it was really the two main characters who provided the context of our narrative today.
19 days ago, my wife and I spoke to my mom on the phone. She wanted to give us an update on her health condition, as she had been having a prolonged cough which would not go away after visiting her primary care physician a few weeks earlier. She proceeded to inform us that she went to follow up with the physician that week, but he was not in. However, she was seen by the physician’s Physician Assistant and when she described the symptoms she was having, he immediately told her she had a goiter. A goiter is an enlargement of the thyroid gland. He scheduled her to be seen by an ENT (Ear, Nose and Throat) Surgeon as well as an Endocrinologist (they handle the treatment of the thyroid). He also scheduled her for an Ultrasound, and expedited it. Someone had discovered The Ninja.
In addition to the discussion of her health, we also talked about their plans for Thanksgiving and the events surrounding the sale of their house and their upcoming move up north. Little did I know that this would be the last time that I would speak to my mother and that I could hear her voice in response.
Just 2 days later, The Ninja struck. I had a missed call from my father and also two text messages. He informed me that he had called 911, Paramedics had arrived and treated my mother for respiratory failure. She was transported to the local hospital (Little Company of Mary, Torrance) and was treated in the Emergency Room. They did stabilized her airway and did the standard work up for a patient who was having the issues that she had, which included a Cat Scan of her Neck. The physicians at Little Company of Mary then began to play a dance with Kaiser Permanente, as that is the insurer for mom and dad. Kaiser would prefer to treat her at their facility, but Little Company of Mary did not want to transfer her with the compromised airway. This was 17 days ago.
The following day, after continuing to debate whether to perform the surgery at Little Company of Mary or at Kaiser it was finally decided that it should be done where she was at. The surgery took place, the surgeon provided an update to my father and sister. He was able to excise the tumor on the right side of the neck, and to save the nerve and that area. However, the tumor had enveloped the trachea, esophagus, and her carotid artery on the left side and he did not feel it was safe to proceed with the surgery on that side. In addition, he placed a tracheostomy as well to provide her with a stable airway. The Ninja had struck even though he was wounded. Even though she had a tracheostomy and had gone under surgery she was very strong and the ICU staff commented that they rarely ever see patients who are as coherent, functional, ambulatory, and in relatively good health if you exclude the tracheostomy. This was 16 days ago, and as of this date, no one would ever hear her voice again.
She remained at Little Company of Mary for an additional day and was stable enough to be transferred to Kaiser the following day. However, late in the afternoon, my father was getting frustrated as the Case Manager at Little Company of Mary was told there were no beds at Kaiser. My wife (who works at Kaiser) contacted a friend who happens to be the Chief Nurse Executive for the Downey facility and we identified that there would be beds available after 5:30 pm. She was transferred that evening to Kaiser. This was 15 days ago.
The following day was the day before Thanksgiving. At this time, mom indicated that she wanted to limit the number of visitors who were coming to see her. You see, as she could not speak, all of her interactions with anyone were via pen and paper. She could totally hear and comprehend, but had to write her responses. This begins to take a toll physically, especially if you end up repeating yourself. This was 14 days ago.
The Thanksgiving weekend went relatively well and mom seemed to be doing better. We were still waiting on the pathology report for the tumor which had been excised, and on the Saturday of the weekend she was transferred to DOU (Telemetry) unit.
Monday, November 30 was the day when everyone identified the true identity of The Ninja. Initially earlier in the day, the attending physician stated that the tumor was Papillary/Follicular Thyroid Cancer, which is the most common form of thyroid cancer and has very successful treatments and the prognosis is very good. However, around 5:00 pm the Oncologist came by to see mom and gave her a more thorough finding of the pathology. Anaplastic Thyroid Cancer. This cancer is the rarest form of thyroid cancer, occurring in only 2-3% of all patients with thyroid cancer. It is extremely aggressive and does not respond to either chemotherapy or radiation. The prognosis is very grim with most patients living 12 months or less. At this time, it was only my mother and I who knew her condition and the prognosis. The one thing my mom wrote down for me to read was “this is not living”. This was the first message to me of how mom was viewing the situation and what she wanted.
I went home and told my wife the news. With her experience as a Registered Nurse she was aware of the cancer, and exactly what it meant. I knew I had to inform my sister and my aunts, as the aunts were going to be coming to the hospital the following day to learn how to handle the suctioning of the tracheostomy for when mom is discharged from the hospital. I texted my sister and asked her to call me. She was in Northern California for her job and was travelling with her boss in a car at the time. Since she was not available, I called my aunts and had a conference call with them. This was very emotional and hard as it was the first time I was acknowledging to others the reality of the situation. I told them one of the reasons that I wanted to inform them first was that I did not want them to go to the hospital the following day and to hear the news there. In addition, my father was going to be there to learn the suctioning as well, and I wanted them to have time to process the news and be able to support my dad if he needed it. I finally was able to speak to my sister. She mentioned that “mom knew it was cancer”. Looking back now, I think my mom had a very strong suspicion that this was cancerous when she heard that it was a goiter. My sister asked if she should come home, and I said not at this time. This was 9 days ago.
The next 3 days were a routine process of mom’s health improving and her being transferred from DOU to Med/Surg. On Thursday, December 3 the staff at Kaiser indicated that she would be discharged later that day. My wife had made arrangements for the necessary DME (Durable Medical Equipment) such as hospital bed, compressor, nebulizer. Also, as the trach care and treatments were so new to mom’s caregivers (her sisters and husband) we arranged for private duty nurses to provide care for mom 24 hours a day. Luckily we had some real gems of nurses, Registered Nurses with experience in trach care who were working in an LVN role (less responsibility and less income). This was 6 days ago.
Over the past weekend, there were some opportunities for family to visit my mother. One visitor who came by was her granddaughter Michaela.
This was the first opportunity for Michaela to see grandma since she was hospitalized. With all children they frequently are confused and troubled by situations such as this. One of Michaela’s reactions when she heard of grandma’s condition was “I should have been a better granddaughter and not caused grandma so much stress”.
We continued to ask mom if she was comfortable and if there was anything we could do for her, but she said she was comfortable and did not have any needs. She did write down “I wish there was a magic pill”. This again was another message to me of how she viewed the situation and her desires.
Saturday, December 5 was an important day, as this was the day mom made her final decision and the one which ultimately turned the tide against The Ninja. You see, we had made arrangements the prior week to visit a well respected ENT Surgeon at City of Hope, Dr. Ellie Maghami for a second opinion. She was very accommodating with us and arranged for an appointment on Monday morning. However, when we informed mom of the logistics with transporting her to City of Hope for this physician visit, she informed us to cancel the appointment. This was the last and best option for any potential treatment and mom was telling us she is “ok” without moving forward with the consultation. For my wife and I, we clearly knew that she was now prepared to go the route of Hospice. My sister also understood, and that day my mother began to tell my sister how she wanted her burial and funeral handled. This was 4 days ago.
On Sunday, December 6, my sister sent an e-mail to my wife and I explaining that mom was having some difficulty breathing and wanted to stop eating. The prognosis was looking worse. This was 3 days ago.
On Monday, December 7, mom was visited by the Hospice physician for Kaiser Baldwin Park. She asked him about her idea of not wanting to eat, and he stated “the disease will control how much longer you live, and whether you eat or not will not have that much effect. If you feel like eating, then eat. If you do not, then don’t”. He made arrangements for her to be transferred to Citrus Valley Hospice, which is an Inpatient Hospice facility. This was 2 days ago.
On Tuesday, December 8, my wife and I visited my mom at Citrus Valley. We both commented to her that she looked visibly better. She also seemed to be in better spirits. In fact, upon leaving, we actually were concerned that she was doing too well as Citrus Valley would not want to keep her admitted there if she was not actively dying. This was 1 day ago.
On Wednesday, December 9, my wife and I received a text message from my sister. She indicated that mom was having significant challenges breathing. However, the LVN on duty could not say whether we need to come immediately. Shortly later, my father called and said that my mom still had a faint pulse, but effectively was no longer breathing. I was still commuting home, and my wife had a late meeting at work and would not be home until 7:30. Around 6:40 pm, my sister called and wanted to know if we were going to be coming. I explained that we could not immediately. She stated that hospice only would be keeping the body there for 1-2 hours, and then they wanted to transport it. We discussed some of the things that needed to be done in the next few days, and we also discussed mom passing. At first, you might think that The Ninja had finally triumphed, but that is where I look at this differently.
Mom was a cancer survivor, having successfully conquered Breast Cancer a few years ago. She was in total control of her faculties and decision making processes up until the very end. She played an instrumental role in the decisions regarding her care, and was never for want of anything during these past 19 days. She demonstrated true strength and compassion, especially for my father who has been married to her for 47 years. She has faced declining health in the form of her mother who passed away a few years ago as well as metastatic cancer in the form of her sister who passed away over 10 years ago. She knew what the diagnosis was, she knew the prognosis, yet she remained as upbeat as possible, never breaking down, and if did not know she had this cancer, you would think she would be back on her feet in no time.
I am sad, but not for me. I am sad for my mother. She looked forward to enjoying her retirement (she had just retired this past July). She was moving up north with my sister and her family to a new house. My mother would not be able to enjoy any of those things that she was looking forward to.
I am happy. Mostly as my mother is at peace. She died very quickly from the time that they identified the goiter. She did not suffer, and she was not in pain.
Ida Baker lived a full life, filled with love, affection, strength, wonderful talents. She was a wonderful homemaker in her early years and went on to a very successful career in the banking and information technology sectors. She truly conquered The Ninja, not for these past 19 days, but for living the life she lived and having an effect on the thousands of individuals that she did.
I choose to honor her with a few photos which show her in a positive light:
And finally, a photo which captures her battle against The Ninja and a great view from her final resting place: