Chapter 18 - Dancing Beyond Cancer - A Hospice of Questions
Chapter 18 -------- A Hospice of Questions
A big decision for Danielle was deciding which hospice to choose. We had received information about the different options while we were in the hospital in Flagstaff. I had already started doing some additional research before we scheduled appointments. It was important for me to find the best Hospice for Danielle. However, Danielle’s high standards and demands would create additional challenges.
Due to her medication sensitivity issues, it would be ideal to find a group that would cater to Danielle’s necessities. Hospice was an extension of the Medical Establishment, so the solutions were going to be similar to what the hospitals provided. The traditional approach worried Danielle as she didn’t want to rely on prescription medications. To our surprise, we were soon to find out a wealth of new additional information.
The first hospice we interviewed, sent two nurses for the initial appointment. Danielle was tremendously anxious about the meeting, with the whole idea of hospice stressing her to the core. She had a million questions for the ladies who came over. Danielle wanted to be informed about every possible outcome. All questions about her specific disease and how the dying process would proceed. All the questions were difficult to ask, but without those answers, Danielle wouldn’t feel at ease.
Some of Danielle’s biggest concerns were that she was worried that she might have made the wrong choices. Danielle specifically asked if she chose the correct path of treatment. I couldn’t believe the response, and I was amazed by the honesty of the nurse. The nurse told us that considering Danielle’s diagnosis of stage 3C ovarian cancer, that she would not have undergone chemo or radiation either.
It was one of those moments that the universe made sure to remind us that chemo could have possibly killed Danielle faster than she already was. It also reaffirmed that the success rate in late-stage Ovarian Cancer is low. If a hospice nurse were willing to share that choice, then I would have to expect Danielle made the right choice too. The only study I could find showed under a nine percent chance of survival to five years with chemotherapy. Now it was more than just statistics because someone who witnessed the aftermath of chemo confirmed those suspicions.
Danielle was additionally worried about pain management options. This hospice informed us that there weren’t any natural options available. They instead used different medications dosages to help with the pain, which means that they could provide micro doses. Hospice gave me the first answer that was legitimate for treating my wife. I believe this is because many people become hypersensitive to medications towards the end of their lives. Their statements did not ease Danielle's concerns.
The most disturbing part to me was that we weren’t going to be getting much support from the nurses involved. Hospice informed us that a nurse would only be visiting several times a week, and the visits would be about an hour. While this wasn’t as important for our situation since we had extra help, it did make me start to observe the shortcomings of our Hospice system. Had we needed more help, it wasn’t going to be provided even under my wife’s incredible health insurance plan.
The biggest thing that they reassured us is that if any complications were to arise that we could contact them at any time. They would then send out a nurse to help with any medical situation. The nurse would then stay until the patient stabilized. The service was available 24 hours a day and even on the weekends. It offered some relief but not quite what we had expected. We asked why they didn’t come by daily. They said that it wasn’t usually until the last weeks of life that they need to send out nurses for continuous care.
They also said that there was a lot of support staff that would also be helping in the Hospice program. I thought it was great that they offered emotional support too. Priests, therapists, and volunteers were all possible options. It wasn’t something that particularly appealed to Danielle because she would prefer her privacy. Danielle was not interested in letting many new people into her life. She had already recruited the support she wanted.
Danielle wasn’t completely sold on the first organization even though she liked the nurses. Danielle appreciated their honesty, and that gave them a foot up on any competition. Danielle needed trust and confidence before she would make any decision. The trust was there but not quite the confidence. The second option held a more optimistic choice because of the additional services they provided. My research showed this was a more likely candidate.
The second visit happened the day after our first meeting. The first hospice had already prepared us, so now it was finding out the additional information that set them apart. We had three incredible nurses arrive to share the information with us. Danielle again had a great connection with the nurses and even felt the same level of honesty from the nurses. It had everything that we liked about the other hospice, but what set them apart was the added benefit of natural treatments.
I couldn’t believe that they offered the options of doing acupuncture, massage work, or spiritual guidance. Then to top it all off, they also offered herbal medications. Shocking news to both Danielle and me because we had never had the medical establishment offer us anything other than traditional synthetic medications. Now we were going to be given a choice. Danielle even opened up a conversation about using Medical Marijuana. They supported the usage of it and even encouraged that Danielle uses other methods of delivery.
Danielle and I were thrilled at the added support and options we were going to have if we choose the second hospice. The nurses were also very professional and promised we would receive very experienced nurses. Danielle wouldn’t settle for second best. While it was still a very difficult decision for Danielle to make, it was an obvious choice between the two options. The nurses already won my favor by provided me an opportunity to expand Danielle’s medications.
I was thrilled by the prospect. I, for months, had wanted Danielle to start vaping medical marijuana oil. I had in my experience enjoyed the concentrated effect. Often, a small puff would provide the same results as smoking much more from a traditional pipe. The fact that she could get a more concentrated dosage would help provide even more immediate relief. The topical and edible products we were using would take thirty minutes to an hour to kick in. The vaping would provide almost immediate relief. The challenge for me would be to find a product that Danielle could smoke.
Danielle was sensitive to chemicals before we met, and now in her weakened state, she was hypersensitive. I couldn’t use most of the products produced on the market because they used chemicals like butane or alcohol to extract the oil. Thankfully I knew there was a process that uses CO2 to extract the oil, and it makes a far cleaner extract for cancer patients. The other issue was finding something with a high enough level of the proper cannabinoids.
THC the most commonly used cannabinoid on the market because of the psychoactive properties was not what Danielle needed. Danielle wouldn’t react very well to large doses of THC. The psychoactive properties would cause too much anxiety and loss of control. Danielle was scared of losing control. The added fear was also due to her improperly dosing herself with a large quantity of Rick Simpson Oil. CBD oil was the best solution for remedying that.
The problem with CBD products is that at the time it was still a developing industry. Few products existed on the market with high CBD concentrations. The demand was not there yet. The local Sedona Dispensary discontinued several strains of high CBD flower because they weren’t selling as well. Although most of the concentrates there were produced with chemical solvents. My search proved how few products met the qualifications Danielle needed.
I needed to find a high dosage of CBD strain. Ideally, I wanted a no THC strain, like Charlotte's Web, made in high concentrations without the use of chemical irritants. The best product that I was able to find at a nearby dispensary was a three-part CBD to one-part THC vape in a forty percent concentration. It wasn’t quite as strong as I was looking for, but it was made using a CO2 extraction process. It was a better solution, and I had Hospice to thank.
Luckily Danielle’s insurance was also going to cover all expenses when it came to Hospice. It had taken a little financial stress off of us because she also wouldn’t be in treatment anymore. It was a small relief to both of us, considering we weren’t going to be having to worry about money for a while. With almost five months of funds available, it was looking up. Then another miracle happened.
One of our helpers, the mother of Danielle’s prized student Rose, delivered a message from her daughter in Europe. It was a touching message which brought Danielle to tears. The letter also informed Danielle that she was coming to visit. It must have been such a shock to learn about Danielle’s declining health. Danielle was, after all, in most of her student's minds indestructible.
It was a huge deal to Danielle that she made the gesture to return from Europe. Danielle was touched and truly looked forward to being able to see Rose before she passed. Rose wasn’t scheduled to return for another six months and had coincidentally left for Europe the day I met Danielle. It was a coincidence that I would not disregard.
It was a hard issue for Rose to face since Danielle had been like a second mother to her for the majority of her life. Rose showed real signs of maturity with her letter and her action to visit. The renewed faith also solidified our decision to give the house to Rose. I still didn’t have the means to take care of the house, nor did I want the stigma that might have come with inheriting the house after just meeting my wife. We felt it was the best solution for everyone involved.
Which also led to another miracle when Rose’s parents offered to pick up the mortgage payments. It was such a blessing we didn’t even know how to express our thanks. It was the perfect miracle to help Danielle quit stressing about the money. Although it didn’t completely fix the issues, she felt better that we wouldn’t have to worry about money for over half a year. Also, the added support from my family and the community was giving her the morale boost she needed.
Danielle was also relieved that she survived the second round of antibiotics. She took the entire regimen as directed by the bottle without any deviation. Constantly Danielle was concerned about her digestive issues, and, the antibiotics had definitely caused irregularities that made Danielle worry more than she needed to. Anything out of the ordinary would be a cause for concern for Danielle. Danielle wanted to know what to expect at all times. The more guidance hospice could provide, the more confidence Danielle could feel moving forward.
The first couple meetings with the head of the hospices didn’t answer all the questions Danielle had about going through hospice. She had her basic questions about what to initially expect but didn’t know what to expect when things would get closer to the end. Danielle would save the remaining questions for our first nurse. Danielle wanted to discuss everything that she could expect from their time together.
The nurse arrived on time, and I quickly escorted her back to our room. Danielle would often try to take visits in the living room, but the decline of her health topped with the cold winter prevented her from leaving the bed. The nurse proceeded to take the usual health readings and tests that would become regular during every visit. I honestly think Danielle enjoyed that part a little.
Danielle usually was very involved in this process and would always request the results of any tests performed. The knowledge she had about her health, blood pressure, and practically everything going on in her body never stopped growing. Danielle knew her numbers better than the doctors or nurses that visited. The answers Danielle wanted were about the journey she should expect.
We were both unprepared for the answers we would receive. It is still rather difficult to understand why the nurse proceeded to answer the questions the way that she did. I will admit that I was even traumatized by the interaction. The damage done by such simple statements became irreparable.
Danielle had many questions for the nurse, and for a short time, she answered normally. Then Danielle brought up her concerns about using medications at the end of her life. The constipation issues would become a great concern at that point. Danielle explained her problems to the nurse and why she had those fears. Without much thought, the nurse answered Danielle.
The nurse proceeded to tell us, paraphrased, that Danielle could expect a huge possibility of constipation, and that was a big problem that she personally observed. She then proceeded to tell us that there was a possibility of it becoming so backed up that it could burst the intestines inside the person. We were both completely scared, considering that was one of her greatest fears. Death by exploding intestines was now a real likelihood. In no way was Danielle willing to die that way. She became consumed by the fear of this new possibility.
It was after this interaction that I faced some of my first signs of fighting Danielle’s fear of death. It wasn’t the dying that worried her as much as how horrible getting to the dying was going to be. It was clear that cancer was a horrible way to die, and the nurse had just informed us that it could be even more horrible than we ever imagined. Danielle had zero desire to go through that and, sadly enough suicide became a new hot topic.
I completely opposed any thought of her trying to commit suicide no matter the journey ahead. Despite her pleas to end the suffering, I couldn’t entertain the idea. Danielle had such a desire to go to heaven, and I felt that it was my purpose to help her get there successfully. Much of my spiritual studies showed that committing suicide was very traumatic on a soul, which created karma that would remain after death.
My research and showed that people are forced to return to an incarnation with more challenges to clear that karma. The second incarnation is made to prove that they can endure suffering without committing suicide. I believe this because of a wealth of proof from my own research. I may be wrong, or I might be right, but I did everything in my power to convince her suicide wasn’t a solution.
My obvious go-to when she started having suicidal thoughts was to remind her about all the children that looked up to her. Repeating if she committed suicide, she would set a horrible example for them. It would also forever tarnish her reputation in town. Between using her fear of gossip and being a real role model for her girls, she would always see through using suicide as a way out. It was clear that we were going to have to face this journey together, no matter how bad it got.
Thankfully we had a different nurse for the next visit. The new nurse was far more concerned about Danielle’s new fears. It was clear that the conversation about exploding intestines had truly left a scar on Danielle’s psyche that she couldn’t move past. The nurse was most of all concerned because she had never heard of something like that happening before. We were both surprised at the response.
The problem was that Danielle didn’t believe the new nurse. She said that if it doesn’t happen, then why would the other nurse say otherwise. It was clear that we had a big issue, and it was going to be a huge concern until we found a resolution. Danielle had her trust betrayed, which made her incredibly upset. It was easy for me to show Danielle the support she needed considering that I was equally appalled at what occurred.
I still don’t know what would cause a nurse to scare my wife with a story that wasn’t true. I told the new nurse how strange it was that she told us all that upsetting information. It just seemed like total disclosure was the policy of the first visit and to inform us about what to expect during the following four to eight months. Telling us what to expect seemed reasonable. Now to find out that it wasn’t reasonable nor true made me very angry.
Hospice was typically only reserved for patients who have less than six months to live and have completely stopped traditional treatments. We signed up for the end of life care not to torture Danielle to death. I still can’t comprehend what would cause another woman to be so cruel for no reason at all. If she did lie, it seemed almost psychopathic to behave in such a manner. Now we had to face the consequences.
Hospice quickly resolved the situation. First, they banned the nurse who made the comments, and I believe she might have been fired too. Also, on top of that, they brought in an amazing new hospice nurse to remedy the situation. The head of hospice informed us that the nurse just recently joined hospice but had many years of Nursing experience. Danielle truly liked this because she knew that the nurse wasn’t going to be coming in with an ego. She was fully aware that the nurse was going to be in constant communication with her superiors, which meant Danielle would always be getting second opinions. This was a huge relief to Danielle.
I was so impressed at how they fixed the situation, and on top of that, they sent in the head of the hospice training division. Much of the fear that Danielle had developed was finally put to rest when she appeared. Again, she had never heard of someone’s intestines blowing up while in hospice. While it was still always going to be something that lingered in the back of Danielle’s mind, it immediately stopped Danielle’s threats of suicide. I was relieved, and I believe everyone in Hospice was relieved that Danielle was satisfied.
Danielle being upset was not good for anyone, and most of all, not good for herself. I was constantly trying to help her work through her anger so that it didn’t control her. I found that Danielle was good at talking about her problems, assuming I could keep a calm demeanor. I was improving in the mastery of my emotions and very rarely let my emotions control my reactions. It didn’t change what I was feeling, but it did start to change how I expressed those feelings.
This change within myself was also helping Danielle bring change in herself. She had started to accept that she was nearing the end of her life, and that forced her to look inside. Danielle realized that there were a lot of unresolved issues that were ever-present in her life. She lived a very traumatic life while also an amazing life. The amazing parts had overshadowed the trauma, but it was now that the trauma was unavoidable. In one lifetime, Danielle achieved many lifetimes of experience.
Danielle’s unresolved issues were extensive. The list had developed more through the experiences we faced together. The topics included her family, dying early, treatment choices, not teaching, her students, the constant physical pain, and so many other little issues that she wanted to resolve. I had been able to help a lot with her abandonment issues, male trauma, and her anger. Danielle would tell me that she recognized her anger in my outbursts, but she condemned me for my display of that anger. Thankfully she inspired me to be better.
Many other issues were more important for Danielle to master, and they weren’t always issues that I, too, was facing. Despite my lack of life experience, I was very well suited to help her with hers. I could offer her a different and usually more positive perspective about a subject. I have always been good at seeing the good in most things. However, I found in death, that there are many things we decide to address that would have otherwise gone unanswered. Hospice passed on this advice while recommending professionals to assist with those problems.
Hospice had a non-denominational spiritual pastor that they offered to come over and talk with Danielle. We declined initially because it didn’t seem necessary. Now it seemed more apparent that Danielle needed additional help. It wasn’t easy for her to come to terms with dying. We all lacked the skills Danielle required to find some peace.
It just so happened that the pastor had decided that she didn’t want to get a flu shot, which Danielle and I both supported. However, it also meant that the woman was forced to wear a mask during the appointment. I greeted her at the door, but even with the heads up, I found it somewhat unsettling. I had hoped to stay the entire time with Danielle to observe the conversation.
My friend who I asked to pick up a specific medicine in Colorado, was driving back to Tucson. Thankfully I was going to be able to meet him just off the freeway 30 minutes from the house. I told him that since he had done me such favor that I would be happy to make the trip a little easier and meet him. The meet up ended up being timed just perfectly with the visit from the Pastor. There was a little relief that I didn’t have to leave Danielle alone. However, this didn’t take away all my anxiety about leaving Danielle with someone who we weren’t familiar.
I made the drive as fast as I could without speeding and just stopped for a quick minute to say hello to my friend. I didn’t even realize until I got back into my car how not present, I was. The entire interaction all I could think about was getting back to my wife. I felt seriously bad that I behaved in such a way towards my friend. It brought awareness of the anxiety I would have, just being away from my wife. I had not observed the reaction before.
This simple awareness had shifted my perspective and to realize there isn’t much benefit to be stressing about something I don’t have any power over. I should be more present in the moment, and if I have time to get away, I shouldn’t be wasting it on worrying. Worrying wasn’t doing me any good and too much just became exhausting. The car trip had allowed me to observe that massive increase in anxiety that occurred simply by leaving my wife.
Arriving home, I found Danielle and the Pastor finishing up their time together. Danielle was calm and very relaxed. Thankfully she found some benefit in her conversation, although she didn’t discuss it much. Her only comment I recall is that it wasn’t quite what she was expecting, and it was weird having her wear a face mask. Danielle had an aversion to anyone with a cold, so it made her feel uneasy. I feel it might have been more productive if we had allowed her to remove the mask, but that never occurred to us.
After the Pastor left, I pulled out the new vape pens I acquired. I now had a more powerful medicine to help manage Danielle’s pain. It was such a relief to both of us to be able to get her pain under control again. For so long, the pain had started to spiral out of control. The support from hospice allowed me to try the medicines that we all felt would be more effective. We never stopped the topical or edible medications, which still provided mild relief. However, the increased dosages from the vape pens were having a very positive effect.
Danielle was even starting to sleep more. For a long time, the pain had kept her awake many nights. Danielle wouldn’t purposefully take naps, but now I was noticing it happening naturally. I noticed immediately that the higher CO2 concentration that my friend picked up in Colorado was almost exactly what we needed. It provided a bit more of a head high than Danielle liked, which I knew how to remedy.
In my research, I found that CBD often reduces the psychoactive effects of the THC. We used a combination of high CDB vapes with the high THC vapes. When she took a puff of the more concentrated THC vaporizer, with a puff from the high CBD one, she would see a more balanced effect. I would also use a CBD tincture to supplement if that didn’t work. This new mixture was almost miraculous in how well it managed her symptoms.
I still wish that it didn’t take Hospice to give Danielle the go-ahead to try smoking vaporizers. It is proving to me again that our Medical Marijuana Industry still has a lot of room for growth in producing effective medications for Cancer patients. I believe this is also why the Medical Industry has attacked many who are doing just that. The lack of support from pharmaceutical companies has stifled the progress that Danielle and I needed. Times are, thankfully changing.
It was finally nice to get some real support from what I considered the Mainstream Medical Establishment. It was rare to get advice that was truly helpful and to have another practitioner who fully supported my point of view. I had felt that much of my knowledge was still second-hand information when compared to the opinion of doctors or nurses. I knew I was right, and I would often need a medical professional to confirm my stance for Danielle to accept it as fact.
She did this with everyone around her, which is why I constantly had to learn to withhold my opinions or manage the way I would share them. If it was important, I could ask the medical professional if my idea was valid. A simple question could open up discussions on topics that I wanted to talk about seriously. I found this more productive than ever trying to force my opinion on Danielle. In my opinion, she put far too much faith into our mainstream doctors despite their repeated displays of ignorance.
I found that many of the opinions I held from my studies were confirmed. However, I also found many were more complicated. It was a big learning process for me, and it always felt like the universe was working to help me understand. Every single challenge we faced led to different opportunities for growth.
Each time I would stay strong, I found the universe would provide the perfect solution. While each time I would fail, I was given the perfect opportunity to rise again. As I saw it, the only way to stop finding miracles was to give up completely. It wasn’t something I could explain, but even as we neared the end with Danielle, the miracles just continued to spread. You can also support the author by...
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