When all else fails, write.

I don't like the person that illness is making me. Can I reverse this? I hope so. I am finding myself becoming small and full of self-pity, and I don't like it. But it is hard to get outside the reality of how challenging things are becoming.

I don't like that my right eye won't blink or squint. I don't like that the right side of my mouth doesn't work. I don't like that it's so hard to eat sometimes I'm embarrassed, or I don't want to eat at all. I don't like that it's not very easy to go out and do things. It's easy sometimes to think, "What's the point?" There. I've said it.

And yet...I'm still here. And there are many things about my life for which I can be grateful. How to not think about what I imagine should be, about what I'd prefer to be? How to work it through? How to work it through?

Writing to the rescue?

Time to Write Again

It's been more than a year since I first committed to words here some of the arc of my journey with illness and life. The fact that after all that time I'm around to write at all is a cause for celebration of sorts. More to the point though, is that lately I've missed writing. I know that the process is good for me. I want to do it more often.

So where am I now? It's complicated.

The bad news is that there has been a slow but sometimes seemingly relentless increase in the discomfort and dysfunction I experience on the right side of my face and neck. I have gradually increased the dosage of a medication I take for nerve pain. I am careful about what I eat, and in front of whom, because I cannot count on being able to eat neatly. I have less control over the right side of my mouth, and I can't open it very wide. Inconvenient. Sometimes embarrassing. Often frustrating. But, with patience and lots of napkins, I can still enjoy the food and flavors I love.

I recently told a friend with whom I was having lunch that my perfect food had become quesadillas, in every variety. Easy to manage in pieces, relatively flat for ease of insertion in mouth, and full of cheese! What's not to like? Of course I need to eat my vegetables, and I do. But a mango quesadilla is a wonderful thing.

The good news, I most fervently hope, is that I've been allowed to start taking Gleevec, a cancer medication that is only experimental in potential effectiveness against my particular cancer. But my heart lifted at the thought of doing SOMETHING. For I had found that despite all my best efforts to stay positive, to take good care of myself, to continue breathing in hope, there were moments when I despaired. So, adding something else to the arsenal has given me a boost. I've only been taking it for a week, so who knows what may or may not happen, but it's SOMETHING.

More later.

Living in Hope

It's now been four months since my surgery, and I am finally feeling energized enough for continued reflection on my situation. Since the focus on my experiences in the hyperbaric oxygen chamber is no longer relevant, I toyed with the idea of changing the title of this blog, but decided that the concept of day to day breathing in hope was still a powerful symbolic motif for me.

My surgery outcome was mixed; the surgeon excised "all visible tumor," but could not get clean margins. He stopped trying when it became clear that the cancer was microscopically present around my jawbone, facial nerve and neck muscle, and so to go further would dramatically alter my quality of life. He also knew that there was no guarantee the cancer hadn't already jumped ahead along nerves beyond any apparent clean margin he might find, and so, as we'd agreed ahead of time, he took what he could without causing major damage, covered it with a skin graft from my right thigh, and sewed me up.

While I was under, also as agreed to, the oral surgeon I'd been working with extracted my right rear molar, dug out some necrotic bone around the area that had been exposed, and pulled together the gum tissue as closely as he could, in the hopes that it would knit completely.

In the short term post-surgery I tried to focus on the need for healing at hand, in my mouth, at the graft site, and at the excision area. I was grateful for a cosmetic result that at least for the immediate future left me looking relatively "normal," but I was also intimidated by the potential, seemingly inevitable, challenges ahead.

To jump start healing, the doctors sent me back into the hyperbaric oxygen chamber the morning after my surgery, straight from my hospital room. I remember feeling incredibly vulnerable, not 24 hours out of surgery, on pain medication, and not able to trust my emotions. I knew the chamber staff would be protective of me, but what I did not expect was the gesture of one of the other "dive" patients, who, upon being told the outcome of my surgery, took my hand and kissed it with a sincerity of compassion that brought tears to my eyes. That was his last day of treatment, and I will probably never see him again, but his simple action simultaneously gave me permission to cry and encouraged me not to give up. It was a gift I've been carrying with me ever since.

Surgery on the Horizon

I have two more treatments, Monday and Tuesday, and then I'm scheduled for surgery on Wednesday the 31st. Mostly I feel ready, if not anxious, to get it over with. I know it will not be pleasant, but maybe it won't be too horrible. I won't know until it's over, and maybe not even then, given that I have to see if everything will heal.

The "what ifs" insert themselves into my consciousness unbidden - not unhealthy, I guess, but not particularly helpful. I want to be able to go back to work. I don't want to be away for too long. But what I want may not be the deciding factor.

For now I want to trust that the doctors and nurses will take good care of me, and that I'll wake up to the faces of my husband and my son. That is a good start.

I think I will use this site to update my progress. I know there is also a centralized site for people with illness to use for that purpose, but I feel more comfortable posting here. With any luck, I shouldn't be away from the computer more than three or four days. I promise I won't post if I'm still on a lot of pain medication.

The metaphor of the dive and the oxygen treatment may linger a while longer. I need ten more treatments after surgery, starting the very next day. I hope I am not too out-of-it for treatment on Thursday. I've seen fellow travelers be rather loopy post-surgery. But I know the chamber staff will watch out for me.

I carry the kindnesses of all my colleagues, friends, family, and loved ones with me in my heart.

See you on the other side.

Down and Up...Down and Up

Down and up. Down and up. With twenty-three dives completed and seven more to go before surgery, the rhythm of the hyperbaric oxygen treatment process has become relatively predictable, if never boring. But with the reality of surgery looming, and the unknown character of its outcome, I find that my emotions are decidedly not predictable, although in some ways they do mirror the "movement" of my dives: down and up, down and up.

Although I want to believe that post-surgery my quality of life will not be substantially changed - that I won't look too different and that I won't face more dramatic surgery later - there are no guarantees of that. In the past, as I've dealt with what needed to be done for the cancer, which both times involved surgery and then radiation, I was able to stay on a pretty even keel. I could more easily visualize the treatment knocking out the cancer, and the love and support surrounding me reinforced my optimism. This time though, although I want to remain in a space where I can hope for the best, I know viscerally that I need to be prepared for the worst. And although I am grateful for the care I have and I don't want to feel sorry for myself, I must confront the possibility that there will be no more respite from this disease - that I will be faced with a struggle of some sort from here on out.

What does that mean? I can feel scared. For the fist time I feel like my life may become defined by cancer, that any hope of "normal" longevity I might have tentatively cherished is gone. About a year ago, my primary care physician was reporting back to me on my high cholesterol levels, and she kiddingly said, "Well, now that it seems that the cancer isn't going to kill you, we ought to make sure that other things don't." At the time, eight years out from the original diagnosis and five years out from the reoccurrence, it felt good to think that that might be true. Today her well-meant joke rings hollow.

But after such a low, perhaps after a bit of a cry, I have so far been able to rally, to remember that I may very well have years left of time to appreciate so much of what is precious in my life - the people I love and who love me, kindness, beauty, humor, music, and some sort of service. Life is change. Even without cancer, the reality of aging was becoming more apparent to me and forcing some concessions. What brings me back is the loveliness of the trees and green canyons near where I park each day for my oxygen treatment. What brings me back is the sound of birds singing now that it's spring. What brings me back is the thoughtful card that arrives in the mail, or the concerned email message. I come back to rely on the old adage that obsessively worrying about tomorrow does nothing but rob today of its strength. I am no good to myself, no good to anyone, if I wallow in the worst that may be. And so I rise, at least for awhile. I give myself permission for my emotions to fluctuate. Down and up, down and up. What is most important is that I end the cycle with "up."

On Community

Now that I am most likely down to eleven more "dives" before surgery, I am drawn to think about the the ebb and flow of our little chamber community over the weeks. The dictionary defines community as "a feeling or spirit of cooperation and belonging arising from common interests and goals." But I would expand that definition to reference, "common experiences, interests, and goals," knowing as I do that my understanding of and feeling of connection to others is enhanced if, as in this case almost literally, we are all in the same boat.

In the chamber, despite all the vocabulary of the dive, the word used by staff members to describe us is still "patients," not "divers," as in, "All patients off O2, safety check completed, clear to begin ascent." We are certainly all aware that we are patients, that in some way or another the three to five fellow human beings with whom we "dive" have suffered some sort of illness or injury that either in or of itself or due to the radiation used to treat it, now requires pressurized oxygen therapy to promote healing. As patients, we spend an hour and a half together in small quarters every day for up to weeks at a time, depending on how the dates of our treatment overlap, and our common experiences and goals bind us in ways both expressed and unspoken.

We are male and female, white, black, and brown. Although I'm sure that some patients who need this treatment are younger, those whose treatment times have coincided with mine are more likely in the forty to sixty-five year old range. Some of us are more comfortable talking, perhaps more quickly forthcoming with the why of our presence and accompanying details. Others are initially less so, but usually open up at least a little over time. We've had breast cancer, salivary gland cancer, and esophageal cancer, amputated toes and necrotic bone. We're in varying stages of overall treatment, some with surgery yet to come and some hoping for our dives to bring resolution to stubborn wounds refusing to close.

My community initially included T. - a smiling, friendly woman, probably about my age, maybe younger, who chatted easily with the other patients. Looking back, I feel fortunate that she was part of my first weeks of treatment. She had a lovely smile, and was willing to tell me, a novice, that, although she'd struggled initially to get over some anxiety associated with the dive process, in the end it really wasn't bad. She was a fan of the staff putting on DVDs of movies to help the time go by, and would ask us our opinions about aspects of them when we were done, a nice way to keep the focus off of our ailments. Although happy for her sake when her time with us was up, I was sad to see her go.

G., also gone now, is an African American, who admitted to being 57. He would usually be waiting in a wheel chair when I arrived, the cast on his foot and calf preventing him from walking without crutches, and staff always assisted him in and out of the chamber. Occasionally a bit of a loose cannon verbally, he was often willing to express his opinion about just about anything, but he promoted the hyperbaric treatment as having already made a big difference in his healing. I came to really like him. He could be funny, sometimes bordering on outrageous, but seemed good-hearted. We wished each other luck when he was done.

Now the only member of my community with more time in treatment than I is J., a soft-spoken, petite, older woman with long greying hair that she wears up to accommodate the oxygen hood. Like me, she varies her activities in the chamber, sometimes reading magazines, sometimes watching TV. Recently, having watched a staff member work a Sudoku puzzle, she brought a Sudoku book into the chamber with her, determined to give them a try. There is a funny sort of hierarchy of positions in the chamber, with the patients who are furthest along in their treatment placed at the far end, and the newcomers closest to the hatch, perhaps in acknowledgment that sitting closer to the exit may reduce feelings of claustrophobia. For the most recent week's treatments, J. and I have occupied the two farthest back positions, and I have enjoyed having her as a neighbor.

These three were the first with whom I felt connected, with whom I cooperated and with whom I felt I belonged. Now there are others, whom I may write about another day. Although I would not wish the needing of this treatment on anyone, I remain glad that I'm not doing this alone. I am fortunate to have a community.

And So We Rise

Fourteen dives completed, now. Either six or sixteen more to go, depending on what my doctors decide. My cancer surgeon said twenty, originally, but the doctors who run the chamber treatment say that thirty is optimal for oxygen penetration. I float in the middle somewhere, anxious to get as much cancer out as soon as possible, but also anxious to allow for the best healing of my jaw infection and my future wounds.

The jaw infection was frightening, the reality of not being able to open or use my mouth normally incredibly intimidating. Next week I will see an oral surgeon who is also an M.D. to discuss the possibility of trying to pull my right rear molar, clean up the exposed bone there, and graft tissue to cover it as part of one grand procedure in which the cancer excision also takes place. I'm not sure if it's possible or reasonable, but I do not want to be at risk for another infection, as exposed bone in my mouth puts me every day. And, as appalling as it is to consider waking up hurting inside my mouth and outside around my ear on the same side, at the same time, there is part of me that wants to get the whole thing over with. It may not be my decision; we'll see.

In the meantime, there are the dives. The time spent in the oxygen hood continues to be relatively benign; an enforced period of moments with oneself if I choose to use them that way. The staff are helpful and kind. They strive to keep us smiling and praise our "good work." "Are you doing okay?" is the refrain each time a hood is removed. I am grateful for their conscientious attention. They are all EMTs: Matt, Gina, Trevor, Ryan, and a couple others whose names I haven't quite gotten down yet. Some have the additional designation "DMT" or Dive Medical Technician. They call us "Mrs." and "Mr.", assist us to safely enter and exit the chamber, make sure they don't overinflate our hoods or catch our hair as they connect the hoods to our collars. They are a reassuring presence every day.

I have found the dives to be a prime example of time's relativity. Very few of the thirty-minute sessions on oxygen actually "feel" like thirty minutes. Some feel shorter, some seem longer. I use some of the time to close my eyes and focus on my breathing, some of the time to read, and some of time to be distracted by whatever images are running across the tiny TV screen I can see. During only one dive was that made difficult, but it merits a post of its own. All in all, when my hood is removed after our third session, I feel calm and ready to ascend.

Ascent is quicker than descent. Ears clear on their own going up. Most of us ask for a blanket, because the air becomes quite cool as we get closer to "the top." It is six minutes to think about the rest of the upcoming day, to fantasize, for a millisecond, that the hatch will open and we'll find ourselves in Tahiti, instead of the basement of the UCSD Medical Center, or, perhaps, that miraculously we'll all be well. I exit down the ramp, staff carefully remove my collar, I remove my shoe covers, grab clean scrubs for the next day's dive, and head for the elevator. I hope it has been another day of healing.