Monday, August 17
For the past two weeks Michele has been getting progressively weaker and experiencing more pain. She is now on a leave of absence from work and either sits in a chair in the living room or sleeps in her bed. She needs help to make any movement – up, down, room to room, etc. She’s going through a lot of the pain medication. The doctor’s feel it is a reaction to the chemo she is getting. Her breathing is becoming more labored and shallow. I see a bluish tinge to her skin, especially her legs.
On this day, I had to leave for business for a couple hours and she was in the living room sitting in her chair watching TV. She assured me she was okay and would call if she needed anything. (She would probably say that if her hair was on fire, but since she doesn’t have any right now, I didn’t think of that).
I returned in the middle of the afternoon and found she was in a lot of distress. She needed to go lie down on her bed. She complained of pain in her chest, extreme shortness of breath, pain in her legs and absolute weakness. I helped her to the bed, but her color and her pain alarmed me. She had blood clots in her legs about two weeks ago and I was concerned some clots may go to her lungs. I decided that this is beyond the two of us and I called for the paramedics. They determined that her oxygen level was at 70% – critical – and that there was apparently some question about an abnormality with her heart. She was transported Code 3 to St. Joseph Hospital, the nearest hospital, instead of UMC where we would rather have her. Time was just too critical. Once she got there, it was eventually determined that there was not an embolism or a heart issue, but a CT scan showed massive “something” in both her lungs. She was placed on the maximum amount of oxygen with a full face mask. If she needed more oxygen than this, she would have been placed on a ventilator. Fortunately, this arrangement supplied her with the oxygen she needed for now. Many tests later, she was admitted.
Wednesday, August 19
After two days we decided to transfer her to UMC, where she had been receiving all her chemotherapy and radiation treatments since the discovery of the cancer six months earlier and where all her records and her oncologists were located. Because of the need for constant oxygen, no diagnostic treatments could be performed to determine what was in her lungs. There was a risk of uncontrollable bleeding due to her Coumadin medication. If there were any complications during the diagnostic treatments, she would have to be placed on a ventilator. Since the lungs were obviously damaged, it would not be likely that they would regenerate and therefore she would remain on ventilation forever. The doctors had to treat her “in the blind.” They knew of several things it could be, including a new and aggressive outbreak of cancer, a bacterial infection, a viral infection, fluid buildup, chemotherapy or radiation damage, etc., so they decided to treat her for everything and see if she improved. Over the next seven days, Michele was given huge doses of strong antibiotics, steroids, and other drugs. Some drugs were to offset the drugs she was receiving. Nasty! During this time, they also intended to slowly wean her off oxygen and Coumadin so that she could have a scope placed into her lungs for diagnosis. Unfortunately, she could not tolerate any reduced oxygen and continued to receive the maximum amount and no internal diagnosis was performed.
Sunday, August 23
On Sunday, we were told by the team of doctors that if there was no response to the medication, it would indicate that there was no viral or bacterial infection and that this was most likely a renewed attack of cancer resistant to all the chemotherapy she had received. There was no more chemotherapy available that would be effective against this cancer. If her lungs did not improve on their own, Michele would remain on the maximum dosage of oxygen therapy and when her breathing regressed, she would have to be placed on a ventilator. There was most likely no return from that situation.
As bad as that news was, and it was a bit staggering, we were prepared for it. God gave us a tremendous peace and we knew that He was in control and that He had a reason for what was happening. I marvel at Michele’s faith and her lack of fear in facing this obstacle in her life. She was and is ready to meet her Savior and does not question his wisdom or tactics. Michele had already determined that ventilation was not a choice of a lifestyle for her and together we had completed the appropriate paperwork to indicate her choices about end of life. We were having some very frank discussions about what we were facing and were very aware that we were not far from the end for her. Her doctor wanted to give the medications a few more days to complete their effectiveness before any more decisions were made.
Wednesday, August 26
Michele’s oncologist met with us and advised that the medications had run their full course and there had been no visible change in her symptoms. She still needed full oxygen – taking the oxygen away for even the briefest moments caused her breathing to become much more labored and she would become weaker and weaker. Eating and talking were difficult at best. There was really not much change since her arrival. The oncologist said that this was a typical outbreak of the cancer that had been under control till now and that it was growing and only a matter of time before her body gave up and could fight no more.
She estimated that Michele had one to two weeks left.
The oncologist desired to place Michele in hospice so that she would be cared for and kept comfortable during her last days. The one that she suggested is Peppi’s Place, part of Tucson Medical Center. She wanted Michele to go there immediately. She then told us about one more treatment that might have an impact on her disease. There is a fairly new drug that is used after all other chemotherapy has failed. It attacks a specific molecular structure in cancer and destroys it. Michele’s cancer would have to have that particular molecular structure or it would be of no benefit. There would be no way of knowing if it would be effective until it was tried. It’s either Pass or Fail. The good thing is that when it IS effective, results are seen within a few days or a week. The bad thing is, we have to find it and get insurance approval because it needs to start now.
Michele was really tired of the fight and although she was not willing to give up, she was not excited about trying another treatment that only briefly prolonged the inevitable. “Oh, no,” said her oncologist team. “This drug is amazing. When it works, it is LIFE CHANGING.” They even repeated that phrase, “Life Changing.” It combats and destroys that cancer and gives many more years of life to the patient.
We decided to go for it. We understood the decision for hospice. Medically speaking, there was little hope and time was short. It was important to get to a place where she could be comfortable and cared for in a quiet and dignified environment. The latest medication could work, but it was a long shot.
We met with a representative from Peppi’s Place and Michele was approved for admission – a room was available.
- 2 PM -
At 2 PM Michele was moved to an ambulance and transported to the hospice. Meanwhile, the doctor had written a prescription for the drug and a search began. This is not a drug that you run into the local Walgreen’s and purchase. It is rarely used by the general public and extremely expensive. About $5000 per bottle. One bottle has 30 tablets for a one month supply.
The oncologist’s office started working on the insurance company. They also contacted a pharmacy that is used to obtain the drug. The pharmacy has an employee that works full time on getting drugs through the insurance company red tape. I decided to contact the HR department at Michele’s work because I knew from past experience that they have some kind of rapport with the insurance company.
First we found out that this drug is generally ordered by mail. Secondly, it is a Level 1 drug requiring over-rides and pre-authorizations and all those other fancy terms that insurance companies use that actually mean, “we may not give you this drug even though your doctor has determined that you need it, and if we do you will have to wait a week or so while we go round and round about it.”
- 3 PM -
Within an hour I was told that the prescription was ready and that the insurance company was intending to waive all over-rides. YES! Now we were just looking for a place that had it in stock. I found out that Michele’s boss had volunteered to drive all the way to Phoenix if necessary in order to get it. I prayed that it wouldn’t come to that. I prayed that we would find it soon and find it close by.
- 4PM -
Michele is getting settled in her room. What a beautiful place! A large private room with its own patio that opens out to a private courtyard with a fountain and bird feeders. The staff is so caring – it’s quiet and peaceful here. The reality of its reason for existence comes and goes. Hard to absorb that, you know. People come here to die – quietly and peacefully – without pain and suffering. What a great place to prepare for passing on – what a great service provided to the patient and to the caregivers.
There are several family members and friends in the room. She is comfortable. She is being pampered. That’s good!
- 5 PM -
Well, actually at 5:20 pm I get a call. I don’t recognize the number. A lady asks for me and tells me that this is The Apothecary Shop. She has been working on getting the drug all afternoon. The store is closing now, but . . . . . she is holding a bottle of the meds. She is also holding the store open, hoping that I can get there soon. I ask where it is located. It’s 5 minutes away from the hospice. I got there in 5 minutes. A few lights are on. A man is mopping the floors with a strong, pleasant smelling disinfectant. There is a smiling lady behind the counter. “You must be Dan. Here is the medication. Insurance paid for it. There is only a deductible to pay.” It was the first time I ever enjoyed paying a deductible. $75 for a $5000 bottle of pills. God is so good. And He used so many people – people we didn’t even know – who stepped up to the plate and fought diligently to get the medication tonight so that it could be started immediately. They understood the urgency and reached out for someone else. Thank you so much!!
- 7 PM -
The first dosage of Tarceva was administered to Michele. We pray that it works and strikes a deadly blow to the cancer.
We need to ‘flunk out’ of hospice!!
