My husband died of Hodgkin's Lymphoma. When he was first diagnosed, the doctor told us we should be happy for the diagnosis because it is the "easiest" cancer to cure - the best cancer to have if you're going to have it. I remember thinking at that moment, that most people only live two years after their diagnosis. I wasn't reassured by the doctor's optimism.
My husband's cancer was very aggressive and resistant to all the conventional treatment - he endured rigorous chemo and radiation. So he also underwent a stem cell transplant and was given a clean bill of health in April, 2003. As soon as that came in I started fertility treatment with the sperm we had banked for two years. The insemination and first in vitro attempts were unsuccessful. But I so much wanted another baby, we scheduled a second try at in vitro for the fall. In August, my husband became ill basically overnight. One day he was robust and healthy - the next run down and clearly sick. He complained of a terrible back ache. His doctor was on vacation which didn't help the siutuation. His office wasn't cooperative over the phone as I tried to describe my husband's terrifying symptoms. They kept telling me he was fine and to see the doctor when he returned. When it became clear that he had lost probably 20 pounds in a matter of days I took him in to the ER. It looked as though the cancer had returned. Just three months after the all clear!
My husband started a new round of chemo and plans were made for a second stem cell transplant. He had a couple of brief stays in the hospital that August and at the end of the month went in for some intensive chemo. He never was released as was planned. In mid-September he became very ill and almost died. I remember having a terrible feeling that all was not right with him and that he was close to death but none of the medical staff advised me of this. It was only after he pulled out of the"dark place" as he later described it that I was told they hadn't thought he would survive.
There were then a few weeks of relative stability. He went to rehab and although weak, was coherant and alert. I went ahead with the in vitro, administering all of the numerous injections on my own, etc. This attempt was also unsuccessful and at the same time my husband again became very ill. I decided to not tell him about the failed in vitro to spare him the sadness. Shortly thereafter, my husband's mind began to falter and he started to lose consciousness. There was another rough night where he almost died and he was put on life support and transferred to ICU. During this time, as soon as I got to the hospital I would start to cry and would continue nonstop the 7-8 hours I was there. I spoke with every nurse, doctor or technician with tears running down my face. I couldn't stop until it was time for me to go home to get the boys from school. Looking back, I am sure my body releasing the fertility drugs didn't help my emotions or matters. I had a short temper and got into a terrible argument with the old high school girlfriend of my husband who had come to visit him. I am sure that would not have happened if I hadn't just gone through in vitro unsuccessfully. I understand it could be considered selfish to try and become pregnant at that time, but I realized how much I loved my husband and desperately wanted to have another baby with him. It was kind of a way to hold on to hope in the midst of so much sickness and despair.
My husband was in a coma for about two weeks. I spent all day with him in his ICU room rubbing his body, hands and legs. Telling him over and over how proud I was of him, loved him and could not live without him. I begged him not to die. I talked about the boys and said they couldn't live without him either. I thanked him for everything; I apologized for everything. I also brought the boys to see him after school many times. Because 10/20 was my husband's b-day and 10/23 our anniversay, we tried to celebrate with cards, balloons and stuffed animals.
Strangely, the doctors were very optimistic during this period. They believed he had Lyme Disease of all things, which they thought had caused the coma. But then, his doctor personally ran some tests on his own and I was called to the nurse's station. The doctor told me over the phone that the cancer had spread throughout my husband's body and there was no hope for a cure. He wanted to stop all treatment, medication and life support. I requested time to call my husband's family in case anyone wanted to come to the hospital. We then agreed that I would return to the hospital the next day (Sunday) so my sons and I could be with my husband when the support was removed. The doctor was not in agreement with my request for my sons to be present. He tried to change my mind, saying that my husband would probably code very quickly and it might be difficult for the boys to experience. But I remained insistent that the boys be present with him.
We went home around 3:00 in the afternoon so I could begin calling relatives - a terribly trying and hard job to say the least. No one was able to make the trip out of state. The boys were of course very upset and almost beside themselves. Around 6:00 p.m., friends of ours, a married couple and their two boys the ages of our sons stopped by with a casserole. I informed them what was going on and had the errie feeling that they were angels sent in disguise. Shortly after 6:30, the hospital called with the ICU doctor stating, "I am sorry to inform you that your husband passed away at 6:29..." I was also struck by the realization that my husband had spared us all from a difficult situation if we had been present the next day when they removed his life support. I became convinced that he agreed with the doctor in not wanting the boys to witness his immediate death. I ended up thanking him for this.
My friends and their children immediately said they would go to the hospital with us to pray and to help me clear out my husband's room. I was calm enough to drive the van on my own with my girlfriend. The dad took all four boys to a local McDonald's for dinner. When we met them there I saw them all eating through the plate glass window and was struck by the surrealness of the situation. A McDonald's meal in the face of death. My girlfriend and I grabbed sandwiches from the drive through and ate on the way to the hospital.
Once there, we all spent 30 minutes praying and saying goodbye to my husband. I was so proud of all the four boys for their courage and strength in doing this. The doctor had told me they would make him look nice for the occassion (again, what a surreal kind of thing - "we'll clean him up for you to say goodbye...") Everyone kept telling me, "We are sorry for your loss" and I kept replying, "It is a loss for the whole world," since my husband was such a gifted educator.
I vaguely remember meeting with clergy and the staff that handles the details after a death but that is all somewhat foggy. We removed my husband's possessions, gave final goodbyes, hugs and kisses and left the hospital. At home, I did some laundry because my boys wanted to play their fall baseball games the next day as a tribute to their father. It was 2:00 a.m. and I looked out the huge front picture window to see strange burning flames in the front yard. I feared that the scarecrows I had on display were burning but it turned out that some kids had set our wooden mailbox on fire.
When the fire dept. arrived I can only wonder what they really thought of the situation because they asked me why I had been up so late and I related that my husband had died earlier in the evening. How many times does that happen? The emergency crew saw that I was only 44 and my sons just 9 and 10. I briefly wondered if the fire was some kind of sign from my husband but later a social worker who works in hospice assured me that our loved ones never want to frighten us from the beyond so it was not any kind of message or sign - thank goodness! Just a pre-Halloween prank on the wrong night for one to be played.
For a long time I did not remember what happened the next day, Sunday. I eventually asked the girlfriend who had been with me that night about it since they were also on the same baseball team. She told me the games had been cancelled because of the cold and rain. But for many months I truly had no recollection of whether we had played those games or not. Just evidence of how the mind shuts down to protect you from the emotional pain. And to this day I sometimes don't really remember where my husband's tumor was - under his right or left arm? My mind refuses to recall that detail (I think it was the left arm). But at this point who cares and what does it matter anyway. That tumor spread and took away a man too soon from his family, his school, the community and the world.
The night my husband died on October 25, 2003 was the night I stopped that endless crying and started sleeping with every light on in the house (the mailbox fire sure didn't help with that). My eyes became moist again and I was able to turn off most of the lights about six months later. This is the first time I have ever written down the events of that day, although I have reviewed them in my mind and spoken about them. Somehow it seems fitting to do so now. I know there is no great catharsis in doing this - I am just relating how and what happened. But these details should have some place in the story of all of this. And considering I am going backward in my grief work, putting down these details in words has its place and I think will result in eventual healing. This is when, where and how my journey started. Now I need to start going forward again. I believe we need to sometimes go back to the beginning in order to accomplish this.