She was in a little house with doors open
To the sounds of children burbling, and windchimes,
With sunshine colored walls and a bed with leaf-green sheets
That smelled of trade winds.
There were growing things,
And -- really -- a rainbow.
She had homemade tomato soup, and...a popsicle?
Sure, why not a popsicle.
There was a little autumn cat who snored amiably from the closet,
And, it seemed like, not too much pain until the last day.
There were daughters who gave hugs
When they handed her something she wanted.
Until it was done.
There were neighbors, who came right away.
If I could have all this, I think I'd feel like
It would not matter if dying was too slow
Or too fast.
I could live with it.
--Victoria Mundy Bhavsar
My last post was a celebration of and a memorial to my Mom's life. This post is a reflection on the process of her dying. My sister and I agreed that we were not particularly traumatized by Mom's actual passing. We had years to prepare ourselves for it mentally and emotionally. But that passing was not a singular event...it was a long series of events.
And more than most posts, this one is written entirely for me. It's long, boring, has a sad ending with not many points of cheeriness along the way. But somehow, I get the sense that I've got to tell this part of the story. Whether anybody reads it (especially all the way through)...well, that's less important once it's been told.
I came out to Hawaii this summer to help out my Mom. I didn't really explain the situation here at the time because she was such a private person that I knew she'd be royally pissed at me if I publicly announced her condition in this forum. But I'm kinda getting ahead of the story, I think. It really started, for me, on Friday, 13 January, 2006.
That winter had already been a winter of changes. I had sold my house and moved into a new house on Oahu's North Shore, just been back to the East Coast for a whirl-wind visit with family, high school and college friends, and submitted my e-resume asking to short tour from the D14 Command Center to go to any one of three ships (CO on KISKA or ASSATEAGUE (forgetting it was changing homeport to Guam), and for some wild-hair reason, OPS on HAMILTON). The changes weren't over.
Mom called that Friday morning. I think I had just gotten off the night shift at the Command Center that morning, so I must have napped for a little while before the phone rang. She had been to the doctor, and had confirmation that she had cancer. She told me the type of cancer, and I still, to this day, after an entire summer of living with it, can't remember the technical name for it. Some intimidating and evil sounding name that basically translated into a cancer of the fatty and connective tissues in her torso. A type of lipo-sarcoma. She was going in for surgery the following week. After the surgery, the doctors would reevaluate and determine the best course of action, chemo or radiation or both. She asked me not to tell anyone in the family before she got to talk to them, meaning her brother and sister. She had already told my sister, and was calling my brother next. We made arrangements for me to fly out to Virginia the week after her surgery, once she was back home from the hospital to help with her recovery.
Ok, very calm on the phone, able to ask the right questions (even if I choked up a little on some of them), able to think about future plans and what needed to be done next and most immediately. Once we hung up, though, I lost it for a few minutes. My boyfriend Rickey, had overheard enough of my end of the conversation to know that something momentous had happened, but I had to much repeat most of the details, probably more for myself than to actually tell him what was going on. He let me blather on for a few minutes, then cry and be upset for another minute or two, before he got tired of the histrionics, and told me to calm down, just because she had cancer didn't mean she was going to die right away, that she could beat it, that there was nothing I could do right then, that being upset about it wasn't going to help...all that pacifying bullshit that bounced right off the shock of the intrusion of the big C into our lives.
Mom had her surgery. The doctors removed a nine pound tumor from her belly. Let me say that again...a NINE POUND TUMOR!! Jeez, the woman wasn't any bigger than I am. Where the hell did she fit nine pounds of cancer in her gut? I mean, my sister and I each only weight seven pounds and some odd ounces at birth. The growth had swallowed one of her kidneys and had been wrapped so tightly around her spinal cord that the doctors damaged the nerves to her left leg a little bit trying to scrape it all off. Their initial evaluation was that she would have to drink a lot more water with only one kidney left, and she might walk with a limp in her left leg. A few weeks later the more detailed results came back from the CT scan. They hadn't gotten all of the cancerous cells out. Some of the little buggers were still taking refuge in the tissue around her spine.
The chemo wasn't too bad for her. Mom had the constitution of an iron horse, but it did weaken her, made her feel kinda dragged out, and she lost her hair. She must have done the chemo sometime while I was OPS on HAMILTON. I remember going to see her on leave, shopping for a wig with her, and then going to the salon to whack off all my hair (which had been almost down to my hips) to send to Locks of Love in solidarity. When I got back to the ship, more than one person did a double-take at my open stateroom door to see who was using OPS's computer before realizing it was me.
Radiation followed the chemo. She made lots of trips between Blacksburg, where she lived, and Charlottesville, where the doctors at University of Virginia were treating her. But the treatment seemed to work. The cancer wasn't growing anymore...just a few cells sitting there in stasis. She was getting frequent CT scans so the doctors could track any growth. In the meantime, she had learned that the cancer was most likely not hereditary. She was frantic at the thought that it was something she might pass down to us. She also tried to modify her diet to help her body slow the cancer's growth, eliminating meats, caffeine, sugars, alcohol and other highly processed foods. *Tried* being the key-word there...Mom had a powerful sweet tooth.
I'm a little fuzzy on the next sequence of events...She moved to Hawaii in December 2007, retiring from a job that wasn't what she wanted at Virginia Tech, becoming my dependent with plans to care-take my house while I was in Bahrain. Somewhere along in there, I think the cancer started growing again. She became part of a study at City of Hope Hospital, in Los Angeles for an experimental drug. Her participation in the study required occasional trips back to the mainland, which was ok because my sister and her husband lived close by and she could stay with them for those visits. She participated in the study for maybe eight or nine months before she was disqualified because the tumor started growing again, though slowly. That was early 2010.
Mom consulted her doctors, who gave the chemo-radiation combo less than a 20 percent chance of slowing the cancer's growth rate this time. Mom declined further treatment at that point. She didn't want to go through the nastiness of the treatment with such a poor chance of any positive effect. We all (her kids and siblings) supported her decision. There wasn't any other option for us.
Gradually, very gradually, her capabilities declined. When I left the islands late last summer, she was still able to travel by plane, though she was slowing down around the house. When I came back in December, it was getting harder and harder for her to walk. The nerve damage in her left leg was causing problems for her mobility. I remember watching her try to get up from her chair on Christmas morning. I had been nervous for her for a couple of days, thinking she was unsteady on her feet because she couldn't straighten her left leg all the way. She walked hunched over so that both feet would touch the floor. I had been surreptitiously looking at canes on line, thinking if I could find her a nice one, she'd be more likely to use it. But Christmas morning, it all kind of came to a head, and she almost fell. I panicked. Holy shit, it was *CHRISTMAS DAY*...where the HELL was I supposed to get a cane for her so that she could safely walk around her house, to the bathroom, the kitchen, her bedroom?!?
Thank goodness for awesome and handy neighbors. Ash, who lived next door, fashioned her a lovely cane from some scrap wood he had laying around his shop. It wasn't hard for me to ask for his help...but I know it was desperately hard for Mom to acknowledge that she needed the help.
'Long about that time, I started to get really nervous about Mom living by herself. The last few weeks I was in Hawaii, my sister and I talked constantly about what to do. I planned to come back for Spring Break, which would cover two weeks. We reached out to other family members, and with their help, were able to have someone stay with her once I left in January, with very short periods, like two or three days, of her being alone in the house.
And thank goodness, also, for the loving generosity of family. Mom's cousin Carol came and stayed with her for a month before I was able to return in March. Which ended up being perfect timing, because three days before my flight out, Mom fell and broke her leg. Carol was there to help her. What a blessing!
Mom stayed in Tripler Army Medical Center for nearly a month. And then went to a rehab facility for another three weeks. My sister came out soon after I did and was able to stay through until Mom came home. Jay, my brother, flew in from Nairobi to stay for three weeks before Vicki came back. And she stayed until I got here at the end of May. My Aunt Linda, Mom's older sister, came out for a couple of weeks at the end of June, then Vicki came back. We pretty much patchworked our way through the summer. It was stressful, making sure that we always had someone here to help Mom. It got much worse as the summer started to come to an end. I had to leave to go back to school, Vicki was running out of family leave, male relatives were no longer appropriate options for caretakers. Mom would *NOT* entertain the idea of a care facility. Her own parents died after spending 17 years in a nursing home, and I think that significantly influenced her view of care facilities.
When Mom returned home after rehab, she allowed her doctor to engage with a hospice organization. Her doctors had recommended hospice in December, but she was reluctant to call them yet. Hospice is usually prescribed when the doctors think a patient has six months or less to live. Gawd, talk about a harsh reality to have to face about your own mortality, "Yes, please, call in hospice...let's start counting the days." But my sister and I finally convinced her that hospice was more for us, to help us help her than any commentary on how long she had to live. Hospice, once engaged, will stay for as long as the person lives; they don't go away just because someone lives longer than six months. And thank goodness for Islands Hospice. Amazing people, amazing organization, amazing services. In so many ways.
They helped us with getting in-home care givers so that we, her family, could get out of the house. They provided medical supplies. They answered uncomfortable questions about what to expect. They supported us as family-members/care-givers by just being there, knowing they were available to call if we needed help with something. Heather and Olivia were Mom's primary Nurse and CNA, respectively, and they are so very good at what they do. Both so cheerful, bright, capable, caring and fun!
But regardless of how awesome Hospice was, the bold, ugly truth is that the summer sucked; the situation sucked; watching my mother die...sucked. My aunt told me during one of our many deep conversations while she was here that this was likely to be the hardest thing I have to do during my life. My back got up a little when she said that. What did she mean *this* was supposed to be the hardest thing? I've commanded warships, for gawd's sake! How could *this* be harder than that?!
Silly Girl. Of course Aunt Linda was right. Or I hope she's right. I'm not sure I could do anything much harder than taking care of my mother during the last three months of her life. It wasn't that any of the things I had to do were physically demanding, or mentally challenging. But I was emotionally exhausted by having to do the same tedious (and sometimes slightly gross) tasks over and over again, day after day, without knowing when I would not have to watch this person that I loved suffer anymore. Mom didn't like not being able to move around her house without a wheelchair. She didn't like that she couldn't make her own meals. She didn't like that a trip to the commissary turned into a major production. She didn't like that she had to wake us up in the middle of the night if she had to go to the bathroom. Linda (who was absolutely chock full of great words of wisdom) said, you can stand on your left ear if you know how long you have to do it for. That not knowing, that uncertainty of how long the situation would draw out, was one of the things that drained my energy. I'm a planner...how do you plan for something when you don't know how long it's going to last?
One of the lessons I'm pretty sure I'm supposed to learn from this summer is to live in the present. Don't look back too often, dwelling on the past, and don't anticipate the future too much and miss what's going on right now. It was really difficult this summer, though, because well, what do you do when the present is shitty? My default reaction is to change it...do something different. Take positive action to alter the situation so it's not so shitty. I couldn't do that this summer. No going someplace different, no arguing with cancer, no walking out on Mom. I had to recognize that the present is temporary. Good or bad, the present will not be around for long. So enjoy the hell out of it when it's good, and learn to recognize the bad for what it is...not permanent.
I learned plenny about myself this summer too. I don't know why it should be a surprise to me, after grinding my teeth through innumerable small boat details that I thought were taking too long, but I'm impatient. I don't like to not be doing something. It annoyed *the hell* out of me when Mom took five minutes in front of the commissary's tea selection to find something that "would taste good." Or when I asked her a question, a simple question...do you want butter on your toast? and she would take a few moments to answer. Or when it took her an *hour* in the bathroom to get ready for bed.
I also default to cold professionalism when faced with uncomfortable emotional situations. One night my sister went out for the evening. I hadn't helped Mom get ready for bed for a couple of weeks, and told her to just tell me what she needed me to do and I'd do it. She was used to Vicki's seamless assistance and got frustrated at having to tell me how to do everything. Then she started to apologize for having to tell me to redo stuff because it wasn't done correctly. Then I got frustrated at her apologizing, and lost any semblance of personality or bedside manner. Vicki and I talked about it the next day...she told me I was scary then. They didn't want to piss me off because I went all icy. Eek. Mom and I straightened it out. It was a simple lack of clarity on each other's expectations. I was following my training on how to take directions, which I thought I had made clear by my initial "just tell me what to do;" she made it too personal when she started apologizing. She expected me to know what to do.
Which brings up another aspect of this summer that my therapist helped me to recognize. Death doesn't come all at once. There are small deaths along the way before that final breath. And it's not just physical capabilities that are lost. Long before my Mom actually passed away, our ability to meaningfully converse with one another died. Her ability to make important decisions about her care went away before she did. The physical losses were almost easier to deal with--I was still there to make her cocoa for her each morning; but the relationship and control losses were more insidious and difficult to recognize for the tiny deaths they were.
And yes, I sought professional mental help this summer. I'm a little reluctant to broadcast that, but my EAP-referred counselor helped me make it through an extremely difficult time with more grace and less self-inflicted emotional damage than I would have been able to muster without her. I'm not embarrassed to admit that I needed guidance to deal with a situation I'd never faced before. EAP provided a tool...I used it.
I needed a lot of help this summer. And I got it--for which I will always be completely grateful; I don't think I can express how grateful. For Islands Hospice. For neighbors, for friends and boyfriends (exes included), for Mom's church. For the Coast Guard...in many ways. For family. For my sister. And for Mom.
In her life, Mom taught me the strength and confidence that comes from being independent, slightly stubborn and doing as much as I possibly can for myself. In her death, she taught me the absolute necessity of being able to recognize when I need help and the strength and confidence in being able to ask for it.