In the beginning when Annie was diagnosed with terminal cancer, I, like most people didn’t know what to expect. Her diagnosis was so awful, it didn’t leave much room for any good thoughts to flow into my imagination. But I now know the truth. Even when our journey was darkened by the heavy weight and burden of a deadly cancer, we could still laugh, we could still love, and for that moment in time we could still live. Nothing says that better then the quote from the movie, Shawshank Redemption; We have a choice, ‘get busy living or get busy dying.’ And we chose life.
At the moment Annie was fighting a battle for her life. Her low platelets were so critically low, that she was always on the verge of a serious internal bleed, or brain hemorrhage. Our only weapon against low platelets were transfusions of new donor platelets. Which never did what they were supposed to do. Her body’s immune system recognized them as foreign and killed them all, along with some of the few good ones she still had. We were in a dilemma.
In this article you will read about the love of a sister, and how important visits from close family members can be to a terminally ill patient. And you will see my wife Annie, as sick as she was, get busy living. She was living in her innocence, which to me was a surreal world, a mixture of fact and fantasy. For this moment in time, she appeared to be in a zone, a world where there was no cancer.
October 16, 2010: Annie and I took a drive out to Mid Continent Airport in Wichita, Kansas, to pick up her sister Lesley from California. I had called Lesley a few days earlier and told her I thought it was time she started making her way out here. I felt Annie was now on a slippery slope, and sliding down rapidly. When we got to the airport, I got Annie out of the car, into the wheelchair, and pushed her inside where she waited until I parked the car. Annie was very excited and really looking forward to this visit with her sister.
Lesley had came out and visited Annie during the second month of her cancer, August 2008, and saw her again a year later, August 2009. And on both of those visits Annie was sick, but there was no way to prepare her for what she was now going to see on this visit, so I didn’t even try.
Rather than talk about our ride home, I’d like to share a note Leslie wrote me a short time after her visit was over.
“I flew to Kansas to see Annie, not knowing it would be the last time I ever saw her. Bless her heart she was at the airport waiting for me. Shock roared through my heart. Holding back the tears and trying to be peppy and smile, and not let on the disbelief, of what I saw the cancer had done to Annie, sitting there in her wheelchair still smiling. Thanking me in the car ride home for coming out. A big shock that night at dinner too; Annie forgot who I was. I was sitting next to her, and she looked up at Melissa and asked, Is this one of your friends, Melissa? Cause she keeps watching me eat, and I don’t know her. Thank God, Melissa got through to Annie that it was me.” (Melissa is Annie’s and my daughter.)
To me, that was the child in Annie coming out again. It was like she had regressed back to a child, and Melissa was able to snap her out of it. It seemed at times, Annie just wanted to get out of the cancer world, and away from all the pain and suffering. I think in some sort of way, it was a gift she acquired from her spiritual journey. I really don’t know how else to explain her ability to change personalities so rapidly. I called her “Little Annie” during her episodes of breaking away from her sad reality.
Another thing Leslie wrote, that was clearly a gift to me, from Annie. Leslie, Annie, and I were at the infusion center getting her some platelets, and apparently as I was walking away, doing a silly little dance for Annie, she said that Annie leaned over to her and said, “I really love that man, Leslie, he is so good to me.”
And to that I say, “Life is about love and being loved, there is no exception.” We lived, we laughed, and we loved, eventually losing in love. And that is a heart breaking experience.
October 21, 2010: Leslie, Annie, and I had a lovely day today; but when late afternoon started rolling around, Annie wanted to go shopping. Leslie and I were against the idea, with her being at such a high risk of bleeding, but we put big smiles on our faces and took her out. She knew Leslie was leaving in two days, and this might be their last chance to go shopping together. (As I said earlier, Annie had critical low platelets, which do not keep one from feeling okay, but if she were to start bleeding internally, there would be no way of stopping it.)
We left our home around 4 P.M., arriving at Target in Derby about twenty minutes later. Once she got in there near the ladies clothing, she seemed to want one of everything for her and Leslie. Her child like personality that she’d been developing was in full force tonight. She was having a blast. We left Target and headed for Kohl’s, which was one of her favorite shops. She started getting carried away in there, too. I started playfully pushing the wheelchair almost under the clothes racks so she couldn’t see anything. It took her a while, but she caught on.
She said, “Bobby, how come you keep parking me under these clothes?”
“Just trying to have a bit of fun Annie.”
“Well, I don’t think it’s funny, I want to shop.” So she shopped, and shopped until her cart was full.
When we got to the checkout counter, Annie had one of those little scratch cards to get her percentage off. When she scratched her card, it came up 15 percent off. She said, “Oh, darn it. I was hoping for more.”
The attendant behind the counter, after she rang the items up, asked Annie for her scratch card, which turned out to be a very precious moment. The attendant said, “Darn it, I hit the wrong key and gave you 30 percent off.” Annie was so excited; and it was probably one of her most pleasant last memories. She was grinning from ear to ear. Annie, loved getting a discount.
The Bleeding Starts
I was standing behind Annie while she was checking out with the cashier, and at one point watched Leslie lean over, give Annie a hug, then wipe her mouth, while telling her she had some food on a tooth, and she just wanted to wipe it off.
When we got home, and Annie inside the house, I went to the car and retrieved all their goodies. Leslie was laying the clothes out all over the room, which for some reason, was making us all laugh. Annie would say, “Oh look, I can make two outfits out of this set.” “This goes with this, and that goes with that.” She was having a blast.
A short time later as the excitement started waning, Annie sat down beside me and thanked me for taking them shopping, while smiling. That’s when I saw the blood all over her top teeth. She was bleeding! I didn’t panic, as in my mind I’d trained for this day for a long time, and knew what to do. I got up calmly, walked over to the kitchen counter, retrieved the pre-positioned flashlight and checked her upper gums. They were seeping blood, which was running down her upper teeth. Then I checked under her tongue, which was okay. Under the top and bottom lips, there was a few blood blisters, about the size of small pencil erasers. I checked the inside of her cheeks, and they had a few dime size blood blisters on them. The last places to look, was the roof of her mouth, and back of her throat. There was nothing on the roof of her mouth, but there were a couple of dime-sized sores on the back of her throat, and I could see the blood running down her throat from where food had opened them up on its way down. The visual of her mouth literally sucked the life out of me, but I couldn’t let her know that.
I simply said to her in a soft voice, “Annie, you are starting to bleed, and I need to take you to the hospital.”
She said, “No! I don’t want to go.”
She started getting very anxious and again in a soft voice, I told her to stop worrying.
“Annie this is not the bleeding Dr. Moore Sr. talks about.” This in itself isn’t an emergency, but you do need to be further evaluated for the possibility of a transfusion.
Once again, her reply was, “I’m not going to go to the hospital.”
I was upset, as I wanted her evaluated, but I said okay, knowing that a multitude of things had to be going on in her mind at the moment, and although I didn’t agree, I would honor her wishes. Lesley tried a couple of times to get her to go to the hospital too, but she refused.
At that point there was nothing else I could do, so I went to the market to get some food for dinner.
I hadn’t been gone five minutes when my cell phone rang. Leslie called and asked me to come back home, as Annie had apparently had a change of heart and wanted to go to the hospital.
I told Leslie I’d go ahead and get the food, and to tell Annie I’d be home in a few minutes, and place a call to the on-duty oncologist for guidance on the bleeding. Annie was okay with that, however, I knew what he was going to say. As soon as I got home, I made the call, and about twenty minutes or so later, Dr. Reddy called me back.
(The following conversation between me and Dr. Reddy was softly spoken.)
“I understand your wife is bleeding.”
She’s not actually bleeding now, but the blood blisters are there and she was bleeding.”
He replied, “we have to try to get her some platelets.”
I told him platelets don’t work for her.
He said “it doesn’t matter, we have to try.”
I asked him if it would be appropriate for me to call the paramedics, as I didn’t want her sitting in the emergency room.
He said, “I understand. It would be appropriate to call emergency services.”
I placed the call and EMS arrived shortly thereafter, took Annie’s vital signs, and transported her to the hospital.
Leslie and I followed them to the hospital in my vehicle. Leslie told me something on the way to the hospital that I didn’t know. She said Annie had some blood flowing from one of her nostrils, and out of one of her ears after I left to go get the food.
No wonder Annie changed her mind. That can quickly become a serious event, but regardless, hoping against all hope, I wanted her to try some more platelets. I already knew, if she started bleeding internally, it couldn’t be stopped by anyone; but depending on the severity of the bleeding, new platelets, if they worked, might stop it.
This beautiful day we were having has now turned out to be very long and traumatic. At this moment, Annie’s survival was certainly in question, as normally, when one starts to bleed, such as Annie, the end is very near.
When we arrived at the hospital it was around 9:00 P.M., and Annie was taken straight back to one of the rooms. Within minutes there was much activity in Annie’s room. She received an IV placement, and was immediately hooked up to 1,000 cc of fluid. They drew her blood to have it typed, crossed and matched, and then ordered her platelets. Prior to the transfusion, the blood count showed her platelets were 1,000; and only yesterday her platelets had moved up to 7,000. That speaks volumes to the situation we were in, and it appeared her isoantibodies were destroying all our hopes and dreams. There was nothing anyone could do, but keep trying.
After Annie received her platelets, the decision was made to put her in the ICU for observation, due to her high risk of bleeding. Apparently, the platelets she received didn’t work. I didn’t bother to get the actual number, just the words, they’re still very critically low, is all I needed to hear.
Annie going to the ICU was just a formality, but gave me some comfort in that, if she started a major bleed out, it would be handled by the medical professionals and the environment would be controlled. If it happened away from medical professionals, all I would be able to do is hold her and love her through to the end. I was living with that thought every day, and knew that when a patient has a bleed out (medical term), the blood can come from all crevices of their body, and projectile vomiting of blood is not all that uncommon.
Leslie and I stayed up most of the night while in the ICU watching over and loving on Annie. Eventually, Lesley curled up in a recliner near Annie’s bed and took a nap. I sat in a chair near her bedside, placed a hand on her leg so I’d be disturbed if she moved, and then laid my head on my arm and had a short nap.
October 22, 2010: This morning around 9:00 A.M, things started to move rather fast. Melissa showed up just after 9:00 A.M. She wasn’t with us last night as I didn’t call her. I knew this could be the beginning of the end, but I didn’t think it was time to get everyone worried.
During the night, I had been watching her ostomy bag for any signs of internal bleeding and didn’t see any. Leslie and I did the bedpan, so we were watching the urine as well; it was still clear. When the time came it would most likely be internal bleeding, and we would see the blood in the urine or bag; however, the other possibility would be a brain hemorrhage, which we wouldn’t know about until it happened.
Around 11:00 A.M., Dr. Dang was in consultation with other doctors about Annie’s condition. Apparently, all were in agreement that she was in end-stage multiple myeloma and the family needed to proceed with hospice.
Not long after their meeting, I was called over to Dr. Dang’s desk, still in the ICU. She broke down their strategy to me, and I think mentally my mind just froze. I told her to give me a few minutes to make a decision, while I took a walk and thought about it.
I walked over to Annie’s room and told Melissa not to let anyone touch her until I got back. As I walked and got more oxygen to my brain, the picture of what Dr. Dang wanted to do was becoming clear. She wanted to put her on the tenth floor for comfort are. Please don’t get me wrong, I believe Dr. Dang was correct in her thoughts, but I was not going to let her die in the hospital. I knew Annie was going to pass soon, but the bleeding had stopped. So I made a calculated decision, that Annie wouldn’t be going up to the tenth floor under any circumstances. I’d agree to hospice at my home, as long as Annie was not told by anyone. I’d tell her when I felt the time was right.
When I got back in the area, I walked over to Dr. Dang’s desk. She was staring at me as I walked towards her, and told her of my decision and plan; but as before, in Feb 2010, she didn’t agree.
“Annie is not going to wake up. She needs hospice now!”
“She will wake up.” I turned and started walking over to Annie’s room with Dr. Dang following me.
When we walked in, Melissa was lying on the bed next to her momma, cleaning the blood off her teeth with a soft rubber sponge. It scared Annie, seeing me and the doctor together. Annie asked me very softly, “Is everything okay.”
I was looking Dr. Dang straight in the eyes, when I replied to Annie that “Everything was just fine, and we’d be leaving here for home in a couple of hours.”
Dr. Dang replied, by saying that she’d go ahead and get the discharge papers in order.
I knew she’d be calling hospice as well, so I went back over to her desk and asked her to have a hospice representative at my home around 5:00 P.M.
Sometimes you have to negotiate with hospital personnel, in a way that lets them know that they are doing what’s best for the family. Dr. Dang was doing the right thing and our only dispute was where the hospice would be. We resolved that issue together. Yes, we’d be getting hospice, but it would now be in our home on my terms, which is what I wanted. I’d be the one to tell Annie about hospice when the time was right.
While in the hallway I bumped into a nurse I knew and she wanted to know how Annie was doing. When I told her she was going on hospice, she looked at me and said, “Oh no!”
It was then that I realized most people don’t know in layman’s terms what hospice really is. In the state of Kansas, I knew hospice nurses would not be allowed to administer any life sustaining fluids, to include blood, or platelets. However, she was allowed all medications taken orally. Some people actually get better while on hospice and are taken off. So the word hospice didn’t scare me, as I had control over Annie’s care. If I had let her go to the tenth floor of the hospital for hospice, sometimes they are actually talking about comfort care. Comfort care is supposed to be the later stages of hospice, when all indications are that the patient is clearly on their way out. Hospice then steps in and starts giving the patient morphine and other medications to help them stay calm and pass peacefully. The person in charge, whoever it is, makes the final decision on when to start comfort care. That would be made by me or Annie based on competent authority and the situation at the time.
In Annie’s case, it would be me; so I thought!
I went over and gave Annie a hug, and told her I was going to have Dr. Dang set up an appointment with the paramedics to take her home, and that they should be here around 2:00 P.M. Dr. Dang already knew that, but I wanted to make sure everything was running smoothly.
A short time later, when Leslie was sitting with Annie, Melissa and I were in the hallway outside Annie’s room. I asked Melissa how she woke her mom.
She said she laid beside her momma, started cleaning her teeth, and her eyes popped open. She told me Annie’s first words were, in a very excited voice, “I’ve done it again!” Meaning, she survived another event. She then asked Melissa, “Do they know what’s wrong with me?”
Melissa told her “No,” but they kept you in the ICU overnight for observation.
Annie asked her if she was going home, and Melissa said yes, but didn’t know when. Melissa knew I would never let her mom stay in the hospital on hospice. Annie was really fearful of dying in the hospital. That was one of Annie’s mothers greatest fears too, but in her case it happened. I basically swore an oath that I would not let that happen to Annie. I was keeping my word under some very stressful circumstances.
The paramedics arrived around 2:00 P.M. Annie was put on the gurney, strapped down, and we were on our way home. We were all very excited.
When we got home it was around 3:00 P.M., Annie was all smiles, happy to be home. Apparently, Melissa called one of her work mates at some point, and told them her momma was coming home to hospice.
What a night this turned out to be. Around 4:30 P.M., Michelle, one of Melissa’s work mates, arrived with several deli trays loaded with food. It looked like we were going to have a party. Shortly after she arrived, many of the girls got off work from Family Medicine East. They just started showing up and partied with Annie. She sat on her hospital bed loving it. That was probably as happy as I’d seen her over the thirty-month illness. Annie was truly graceful under such extraordinary circumstances, which in part helped make this an amazing evening, and allowed the newly found child in Annie to have one of her finest hours.
During the festive event, the hospice nurse showed up. I was informed by Melissa that I owed her “momma” an explanation. I cleared the living room of people, then went over and sat beside her on the bed.
She asked me “what was going on.”
I told her nothing was going on that she needed to worry about. I explained to her that I negotiated with Dr. Dang, who was in consultation with other doctors, that were all in agreement; you needed to be on hospice. So I agreed to hospice to get you home without a struggle or red tape.
I immediately saw the worry and disappointment come across her face; but as I gently squeezed her hand, and told her not to worry, she started relaxing again.
As we talked, the nurse was doing the forms, which I signed a little later. Annie was now officially on hospice. Not long after I signed the papers the nurse left and told us she would be back tomorrow to visit with us about the policies and procedures of hospice.
I told Annie, as things are at the moment you make your own decisions. I promised her this was a formality and no one was going to touch her. I did make her laugh, when I told her, “You can’t be sitting up partying one moment then put on comfort care the next.” She loved that, and seemed to relax even more.
Hospice Party Part 2, is end of life care talk with Annie and the nurse, to include a brown paper bag with the end of life care drugs, which I will tell you all about, to include how they work and their purpose. After reading part 2 you, will understand how the process works. You won’t be caught off guard, as was my case.
Everything I did while being Annie’s caregiver had an ultimate purpose in life that I was unaware of…To help others understand what would certainly be an unknown entity for them, and very frightening.
As a caregiver you’re the center of your loved ones wheel, you’re often their eyes and ears to the world. You’re going to make mistakes, and when you do, accept responsibility for your actions and move on. But don’t ever let anyone talk down to you. You deserve better than that—“You are a Caregiver.” Humanity in its finest hour!