Sometimes it is easy to forget that my life is much bigger than just dealing with the aftermath of my husband’s affair. Another blogger suggested that we write about our “other life”. She was suggesting that we are all more than cancer survivors and that we flesh out the pictures that we present to one another. I realized that I rarely even think of myself as a cancer survivor – I was barely achieved survivorship when my marriage of 28 years blew apart. At the end of last week, as I was considering the emotional energy that I have put into the survival of my marriage – sometimes to the exclusion of all else – I had a wake up call.
In addition to being a woman in a struggling marriage and a breast cancer survivor, I am the mother of a twenty one year old daughter. In fact, from 1989 until the fall of 2009, I considered “mother of E” as my primary role. Yes, I was a devoted wife. Yes, I was a high school teacher who really loved teaching. Yes, I had great friends and an extended family and hobbies and health issues and pets and many other facets to my life. The largest proportion of my life, energy, and emotional wherewithal, however, went to my daughter. She is bright, loving, and has been successful at anything she has really wanted to do. She read early, well, and continues to love it. In middle school, she adjusted to three schools in three years and survived. In high school, she took A.P. classes, participated in theater and academic competitions, won medals and scholarships, had her heart broken, and graduated at seventeen with honors and 18 college credits. She graduated three weeks ago from college at 21 with two majors, a minor, and a solid academic record.
On the surface, it seems like a very smooth situation. These facts do not, however, really show her struggles. She has had chronic health problems since she was a preschooler – if there is a bug to catch, she catches it and then has a lot of difficulty throwing it off. Her reactions to medications are completely unpredictable – drugs that knock others out make her wired. She has had hives, tachycardia, and hysterics all as reactions to medication. In 2009, she had the flu three times, complicated by bronchitis, and by Christmas had developed chronic asthma. She has hemiplagic migraines and spent a month in the middle of a spring semester with a neurological deficit on her left side, adjusting to various medicines intended to keep it from happening again, but which actually made her throw up, pass out, or something equally unpleasant. She is attention deficit and struggles constantly with organization, focus, and completion issues. She cannot, however, take medication for this condition because she does not sleep. She was diagnosed with depression when she was sixteen, which is generally well controlled with medication but can show up when she is under stress as panic or anxiety attacks. She also spent one memorable spring semester (not the migraine one) sitting on her couch staring at the television, and only leaving the house if someone actually went and made her get in the car to go to class, or to dinner, or anything else. This problem actually was fixed with a medication adjustment, just in time for her to tackle 21 hours so that she could graduate on time. We breathed a sigh of relief when she walked across that stage three weeks ago.
She is loving and giving and loyal and in most ways mature ahead of her years. I never had those concerns during her teen years that many parents have to deal with – she was careful about her personal safety and pragmatic about sex, drugs, and alcohol – unlike many of her classmates. She was and is, however, emotionally high maintenance – not self soothing, not analytical about her own emotions, not always able to see the long term effect of those little choices we all make. Until the fall of 2009, I was her mom, her friend, her cheerleader, and her reality check. I always encouraged her and supported her efforts to take that next step – into the dorm, to study abroad, into a house with a roommate. I was always there in the background to provide a safety net. And then, after a really rough summer and fall that resulted in my own bout of depression, I discovered that my husband had had a short affair….and I suddenly had less emotional energy to give. On most days, I was able to pull it together and almost meet the emotional needs of those I love, but there have definitely been days when I have barely been able to pull myself together enough to walk and talk and act like a semi-normal human. So – during one of the most exciting and difficult periods of her life, I have been going through the motions – and she has felt it.
And then, two weeks ago today, she had a tonsillectomy. It was planned. It is the most commonly performed surgery in the nation- go in the morning, get out in the afternoon, a day or two at our house with ice cream, and then on with the rest of her summer – big canoe trip, capstone project presentation, camp counselor, and then the big move to live with her boyfriend in the “metroplex.” My first inkling that this might not be as easy as I thought was my conversation with her doctor before she came into the recovery room – he told me that “although the tonsils were deeply embedded, the surgery went fine” (????). He went on to talk about closely observing her for 3-4 days and the 12 -14 days she would be out of school and off work with a greatly reduced activity level (????). Finally, he went on to talk about the level of pain she would be in and the necessity that she take her pain medicine – and then handed me a prescription for Demerol. Demerol!!! Things were a little rough for the first 2 1/2 days, and then she was fine. The pain was manageable, she stopped the pain medicine, went back to her own house, and started resuming her life – although SLOWLY!. Everything was going better than expected – and then she woke up spitting up blood on Friday – ten days after the original surgery – and her ENT was 7 hours away at his aunt’s 100th birthday celebration.
So – off to meet her and her roommate at the ER, an examination by a substitute ENT called in by her doctor, followed by chemical cauterization, and her release to return home and sleep, while we went to work, all slightly shaken but glad it was over. Her boyfriend arrived for the scheduled canoe trip (canceled of course) in the early afternoon, and my husband and I went thankfully and exhaustedly home. I went to bed at 6:30. Yes – to bed at 6:30 on a Friday night. At 8:30, J woke me up. E had called, the bleeding had started again and was much worse, and her doctor had made arrangements for her to see a specialist at the ER in a slightly larger town 30 miles away. We arranged to meet them there, and I threw on clothes and splashed water on my face, and off we went. When we arrived, the nursing staff was attempting to prep her for surgery, and she was refusing to cooperate until she had seen a doctor. When he arrived, he explained that the bleeding she had is called a sentinel bleed, and is a precursor to a hemorrhage if the site is not repaired. OK, no choice – surgery again for electrocautery. She came through it well, although her red blood count was low, and was released to go home sometime after one o’clock. She returned to her own house, boyfriend in tow, and the remainder of the night was peaceful, Saturday was low key, but pleasant, and she called Sunday morning and was great – no real pain, still on a liquid diet, and she had made arrangements for her roommate to substitute for her at camp for the first part of the next week.
Her roommate called early afternoon, the bleeding had started again and was much worse – what should they do? Go to the ER!!! We met them there, to find an ER staff that did NOT have itself together – she was sitting cross legged on a hospital bed dripping bright red blood into an orange juice bottle…no one with her but the panicked roommate. The next hour and a half had the characteristics of a nightmare. It took over an hour for the on call physician to call the ER back – the ER doctor and nurses did not know what to do, they were not willing to try and stop the bleeding in case any action caused an arterial bleed, so there she was – bleeding into a sterile bag and gargling ice water. The surgeon finally called back and had them start an IV, and her gargle with hydrogen peroxide. Then blood started gushing out of her mouth and nose – she was vomiting blood that had been collecting in her stomach. When he arrived, he examined her and had her prepped for surgery.
Four stitches and electrocautery of both sides of her throat later, she was back in recovery, on the borderline of needing a transfusion, and required to remain in the hospital over night. As might be expected, the pain medicine made her wide awake and jittery, and by 5:00 a.m. she was hysterical. With the help of a small dose of Xanax, she got a couple hours of sleep, which I used to shower and pull myself together, and then her doctor came in on rounds. He was very concerned about E and extremely apologetic for being out of town, which I found quite amazing. He was the one who had made all of the arrangements, including both surgeries, and had called both doctors who had seen her. He was also in constant contact with the nursing staff during all three emergencies – and was actually the one who had prescribed the Xanax for her the night before – from his car, while he was driving in from his celebration. I had no complaints. He was quite serious with us, however, and said that the surgeon had repaired every bleed he could find, but had not located one that would have caused the volume of blood loss that she had experienced, so she needs to be carefully monitored and any bleeding will require an immediate return to the ER. She had lost enough blood (5 oz pumped from her stomach alone) that if she loses any more she will have to have a transfusion.
Meanwhile, the last couple of weeks have been difficult ones in my marriage – it feels like we take a few steps forward and then a lot more steps back. We were in the middle of a huge argument when E’s roommate called Sunday afternoon. We have had some really joyous occasions, including E’s graduation and visits from family and friends, but I have been on autopilot and not really feeling the joy. That stops now. I almost lost my daughter to a kid’s procedure – a tonsillectomy. I intend to live every moment fully, and enjoy the moments with the people I love. The reality is – there are many worse things in the world than a husband who had a fling.
On a lighter note, the first words out of my daughter’s mouth when she came out of the 3rd set of anesthesia were “Mom, I’m so sorry – I got a tattoo on my hip two years ago – I’m really sorry! I don’t like it, and I won’t ever get another one.” She almost died, and her only worry was that I would find out about her tattoo….