Dear Mom,
In the past few years, whenever something happened in my life, good or bad, I always got the urge to call you and bring you up-to-date, reassure you, and get your reassurance and advice. For the past few weeks, I've had that urge to call you constantly, because a lot of big changes have been happening. Now I can't call you, but I can still write you a letter. I can't mail it to you, but here is what it says.
The big news is that you have died. This was quite a shock to everyone. It happened very fast. You had a lot of things going on -- oxygen masks, IVs, tests, pain medication, sedatives, all kinds of doctors and nurses, and lots of family members with worried expressions on their faces. It must have been very confusing, especially in the last few days, so I thought I would explain to you what happened in case you were confused.
About two years ago you were treated for breast cancer with a combination of surgery, chemotherapy and radiation. I know that was very hard on you, but the treatment seemed to be quite successful. You recovered some energy and were able to spend quite a bit of time in the last two years traveling with your husband. You were getting regular follow-up care to make sure the cancer did not come back.
About three weeks ago, after a short trip to Chataqua, New York, you were exercising with your friends at the YMCA. Things didn't feel right, though; you had been complaining about a feeling of bloating and pain in your abdomen. You said that you must have eaten something that didn't agree with you. You were only a few days away from your regular follow-up visit with your doctor. But when you called and told him about the problem, he suggested you go to the Emergency Room immediately.
From that point everything started moving with frightening speed. You had a CAT scan, and it showed tumors in your abdomen. It isn't exactly clear whether these might have been caused by cancer cells from the breast cancer or whether it was another, separate case of ovarian cancer. It doesn't really matter much at this point.
It would be easy to get very angry at your doctors and blame them. I find it a bit hard to believe that oncologists screening someone regularly for cancer would fail to detect such an advanced case of cancer. It isn't like you came down with a rare tropical disease that was outside their specialty. If anything I would have expected them to suspect cancer and do extra tests to rule it out even when it wasn't there. However, it is important to note that this kind of cancer, in the abdominal cavity, often has no detectable symptoms at all until it is very advanced. And I remind myself that the treatment you got two years ago did restore your health and give you two good and enjoyable years you would not have had otherwise.
Anyway, the next thing was that you went down to the Magee-Womens hospital in Pittsburgh for some tests. The plan then was to find out what was going on and make a treatment plan. But your pain got rapidly worse. You were admitted. I spoke to you on the phone each day for a couple of days. I was making plans to come and trying to arrange with my father and brother to come too. We got the word that you had been moved to the intensive care unit, and so everything went into high gear. We moved up our visit. My brother and my father arranged to fly out. We all got into Pittsburgh the evening of Thursday the 9th of August, just after a series of severe storms had produced tornadoes and flooding. When my father and brother got in by plane around midnight they immediately went to the hospital. Grace and the children and I all came to visit too, in the middle of the night.
You were miserable and frightened in the ICU. You were curled up on your side, wearing an oxygen mask, with your eyes tightly closed. You were able to talk, but mostly we just wanted to hold your hand. It took a while for us to figure out exactly what was going on. You had a a partially collapsed lung, and fluid building up around your lung. It was hard for you to breathe. You had pneumonia in one lung. You also had some sort of kidney infection. But with tubes and antibiotics and a lot of moral support over the next day or so you improved. You got your eyes opened and we were able to sit and talk with you. We talked about how you were doing, what we knew and didn't know about your condition. We told you about our families and how well everyone was doing. We talked about dying and what we thought it might be like, and what you believed and we believed would happen to you after you died. We told you we loved you.
You were moved back into a regular hospital room. This was still not a very comfortable environment but it was a far less frightening place than the ICU. Over the next couple of days you had a lot of visitors -- your husband Dick, your daughter-in-law Carolyn, my father Richard, my brother, your niece Linda, your nephew David, and Grace and the kids. We arranged for people to stay with you round-the-clock. Often one of us would be with you in your room while another one of us caught a quick nap in the waiting room next door.
One night while my brother was sitting with you during the middle of the night you began fighting to get out of bed. My brother tried to use the call button to get help but it didn't work. He had to run out into the hall and yell for help. You managed to get partly out of bed and it is a miracle you didn't tear out an IV. But you had a breathing crisis and you had to go back onto the high-pressure oxygen mask. You hated that mask because it was painful; it rubbed your face raw and dried out your lips and mouth terribly. For a few days it went back and forth like that. You'd improve a little bit; you got a transfusion and some new drugs and that seemed to help. But you'd get worse in the middle of the night.
The CAT scan and biopsy was postponed again and again. The doctors found that you had blood clots in your leg and also that something had gone wrong with your heart. It was very weak and it appears that you may have had a heart attack, or maybe it was damage from your previous chemotherapy, or maybe both. They put you on heparin to thin your blood. They decided they could not do a biopsy. At one point the doctors were considering putting you back into the ICU but you did not want to go back. What you wanted was to leave the hospital, and to go up to a nursing home in Erie so that you could die in comfortable surroundings.
This brings me to the point of talking about your wishes. You made clear both in your written directives that if there was no chance of recovery, you did not want invasive procedures or extreme measures taken that would just serve to prolong your life. You told these things to the doctors as well -- no tubes for breathing or feeding, and no zapping your heart with electricity if it stopped. It is one thing to check some boxes on a form, but I think it is quite another thing to realize that it is time for these directives to be carried out. I was, in fact, awed by your bravery in sticking to your principles.
So, we next focused all our attention on trying to get you moved to Erie. I have to confess that I was terrified that you would die before we could carry out your wishes. But there was only one day's delay, and on the morning of Tuesday, August 14th, the ambulance crew came to take you to Erie. I rode in the front of the ambulance with the driver while you were in the back with the nurse. For me it was the longest chunk of uninterrupted quiet time I had gotten since leaving for Pittsburgh and I finally broke down crying for a while.
I thought that the stress on the family was going to let up and that you would be in good care. But apparently hospice care in Michigan and Nevada and California is much different than the hospice care arrangement we had in Erie. They got you settled comfortably into a room at the Manchester Presbyterian Lodge. The social worker and hospice nurses and nursing home administrator and head nurse greeted us. But things did not go quite like we planned.
All of your IVs and needles and big heavy oxygen masks were removed. Instead you just had a simple cannula in your nose for oxygen. Your pain medication was changed to liquid morphine by mouth. But after 24 hours it became clear that things weren't quite right. You went from being able to communicate to sleeping around the clock. You were over-medicated. It also became clear that without some orders from the doctor, guidance from the hospice organization, or specific requests from family, the nursing staff at the home was not going to give you special care. For example, they still had you on a regular diet. They would plunk down a meatball sub on your table and take it away an hour later. Because you were so heavily drugged they would not even try to get fluids into you. You asked for pen and paper to write some notes but you were so sedated that we could only read a few words of what you wrote. You wanted to communicate but you couldn't. The system was failing you again.
So once again the family went into high gear. We started a round-the-clock visiting schedule with you. We had to feed you because the nurses were not trying hard enough. We got your diet changed to food that you were better able to eat. We started trying to get your doctor to change your prescription, but we were unable to get the doctor out to examine you in person and change your orders until the evening of your third day there. Your condition was changing for the worse so rapidly that we found this completely unacceptable. I began refusing part of your medication on your behalf.
This was probably the most nerve-wracking experience of my life, because above all I did not want you to be in any pain, but I thought that you deserved to share your last days with your family and friends. I think it was the right decision, though. You became alert again, while reporting that you were not in any pain. You were able to visit with family and friends. We got round-the-clock visitation going again. Carolyn came back, and brought her daughter Alicia. You had live music. You had grandchildren visit. You had a couple of good days.
We still felt like we had to watch over everything. Even after your doctor came back and changed your medication orders, although my father followed him down to the nurses station to see what he wrote, what he wrote was incorrect. I felt like we were having to act as doctor and nurse and social worker ourselves, all the time. Between the lack of sleep and the nervousness, I completely exhausted myself, to the point where I could not walk and began having hallucinations from lack of sleep. The rest of us were also exhausted. I developed an ulcer. But it was a small price to pay and it has already healed.
You gradually became weaker. Your heart rate went up and your blood pressure went down. You began to accumulate more fluids in your lungs. We got your medication raised again so that there was no possibility you would be in any pain. The decision was made that you could not receive anything more by mouth to eat or drink. On Saturday evening at about 6:30 p.m. you died. It was as peaceful and graceful a death as we could make it.
I just want to say a couple more things.
First, that the way you faced your death was an inspiration to me and to everyone around you.
Second, when my father and I were visiting you in the ICU, you said that you were very proud that you had always had the ability to forgive everyone who had harmed you. I would like to ask you one last favor. I want you to forgive the doctor in Erie who displayed such indifference to your condition. I want you to forgive the other doctors that failed to detect your cancer. I even want you to forgive the doctor in Pittsburgh who had such terrible bedside manner that he burst into your hospital room, explained loudly that your heart was failing and that there was nothing more they could do, and left. I will forgive all these people. It might take me a while longer, though. I'm not quite as good at is as you are.
Third, I'd like you to remember that we had our share of doctors with poor bedside manner and nurses who treated you like an annoyance, there were also quite a few people who were very kind to you. The hospice nurse who was with you on your last day was wonderful. The palliative care physicians in Pittsburgh were wonderful. They spoke very calmly to you and asked you if you had any unfinished business. You said that you wanted everyone to know that you loved them.
And last, I just want to thank you. You were a single mother in a difficult time. You had a hard and complicated life. You raised me and my brother. You did a great job. You re-married and brought new fathers into our lives. You cared for my stepfather Wence, and you cared for your mother, and you cared for your husband Dick. You enriched the lives of everyone around you. You had a lot of friends and you were well-loved, and you still are.
We'll go on. We'll miss you terribly. I wish you had gotten more time to enjoy your grandchildren. I wish we had gotten more time to spend with you. You said that you were concerned about the state of the world. The world will go on. It will be OK. We'll be OK. And we know that you are OK now too.
I'll see you again, before too long. And I'll be in touch.
Love,
Paul
