Tonight is so different then seven years ago. Tonight, I am sitting with this sweet baby in my lap, smooching his soft head, rubbing my lips on his forehead, savoring this miracle baby, seven years ago, I nearly lost my life. Ah, so very different indeed. Maybe this is tough because I am alone on maternity leave, or still have puddles of pregnancy hormone in me, maybe it’s a seven year itch. This has been the most emotional year I have had in awhile.
This is a most difficult post for me to share. People might not understand it and I worry, they might think this is my permanent state or I’m depressed. I’m not. Some people, get it right away, because they have the same moments, the same sadness at these anniversary’s, those life changing events one cannot forget. When people leap about me and critique my life and emotionally state verbally, and remind me to be happy during the first weeks of October, they can’t really understand, this is my time to remember, mourn, think, ponder so the rest of the year, I don’t forget to live each day as the blessing it is and has been graciously given to me. This is my memorial day.
I really do appreciate my life. I have been given that priceless gift above all gifts, a blessing you can’t quite understand unless you have been given this gift by God. I have been blessed with a second chance. It is a gift that often makes me love too quickly, give too much, be overly emotional, and love life and people as much as I can, even sometimes getting hurt or just plain making people think “man, she is a weird one” (which I totally take as a compliment). I know what you might not know. This, could be my last breathe, no, it really could! It could be yours, mine or maybe my last day, maybe our last day. At moments I feel like the white rabbit in Alice in Wonderland….”no time to waste, no time to waste.”
I have been suffering from PTSD in many small and large ways since 2005, even before I got sick. (The PTSD now comes and goes, little words, thoughts, smells of a hospital can turn my mood quickly. I cringe and crawl inside, all from the mugging and the illness.)
So much happened in the year of 2004-2005, but where to start is just as difficult. It really started in January when a young man tried to mug me and I fought back. And won, I dare say (another story for another day…)But when the leaves start to turn and fall, the sky turns to autumn blue and clouds roll the midwest blue and grey, it comes back to that one word. It a word that strikes fear into your hearts, can break any man, no matter how strong,and has touched so many in one way or another…..cancer.
The pain first started that July with massive, debilitating stomach cramps. My parents had separated after 33 years, I’d been mugged, both remaining grandparents had passed away, my husband and I had moved 100 miles to be closer to our parents and, I had just stopped taking birth control because Diggy was 2 1/2,it was time to have another. We had a new home and were trying to move past all this pain and just plan craziness of life.
The doctor had treated me for stress, irritable bowel syndrome, gas, and various other illnesses. Nothing touched the pain I was constantly in by August. I was 29 and so close to death, I could feel it, sense it at moments, but I ignored it. I feel sick when I think back about it. To get you the story without all the dirty details, it was a summer of suffering. I was pale at times, shaky, sick, without appetite But, I was also on weight loss program for my brother & future sister in laws wedding in October.
I adored my brother and her both, he and I had always been grossly over affectionate with each other,and silly. He made me laugh, snort and laugh till I wheezed, we were clowns together, best friends as children. Hell itself couldn’t have kept me away as the matron of honor. I was thrilled and bloated.
I remember some of that week. I was running, doing errands for the wedding. The Saturday before, I had a massage, I asked the girl to focus on my side, back and abdomen. She rubbed for 45 minutes. It did nothing. I ate, I thought I’d turn inside out. I cried myself to sleep.
Wednesday I couldn’t take it anymore. I was so bloated, so puffy, I called the doctor again. I remember sleeping on the table, Diggy so little I kept waking to check him. I couldn’t stand the pain. They gave me a script for pain, and ordered an x-ray. I went to burger king, got Diggy lunch, because we’d been in the office so long trouble shooting we missed lunch. I couldn’t eat, but got him some nuggets, drove to the little local grocery and called my husband and my mom. I passed out from the pain. I remember my husband knocking on my window. I can’t tell you how long I was there, or what Diggy did besides eat. I know angels were with us, my son didn’t choke on a nugget, didn’t cry out for me, didn’t wet through his pants. I didn’t die in the jeep in front of him.
My mom and husband took me back to the doctors, or was it the ER? They ordered enemas, must be a blockage. I can’t tell you how that diagnoses came about. I was driven home and so sick I lay on the floor, my mom did them for me. I remember very little and struggle to put things in order. And, nothing. Nothing came out, my mom said “this isn’t right something, anything should come out with two enemas.”
When I wake at around 11 p.m., my brother, sister in law, mom, dad, husband are around me in a tiny room. There is a portable john, and more enemas and nothing but pain. So much pain. I’m moved and everyone is gone but my husband and mom. I’m high on morphine, I’m drinking barium, it taste awful but I get it down, it’s midnight and we’re headed for the MRI. A black spot shows on my left side in my descending colon. It is a complete blockage of my colon and the colon behind it is severely distended. Ready to explode.
In the morning on Thursday, I meet a man, handsome, with dark hair and a kind face with average hands. There is no magic in them, nothing outstanding about them, but with them, he will save my life. He doesn’t remove my ovaries, even though colon cancer loves to metastasize on lungs and ovaries. He is protecting Nash potato, and doesn’t even know it. My aunt says it is the first thing I ask him after surgery, can I still have babies?
I am wheeled in for a colonoscopy, I see my name, and talk to a kind nurse. I notice they’ve spelled my first name right, how nice I think. My next memory is in the white hallway, under white lights, my dear pastor is there, praying, my husband, mom and my dearest uncle. They have red under their eyes and everyone looks like they’ve seen a ghost. I don’t know it’s me that has them terrified. My husband explains, I hear the word cancer, but don’t understand, the drugs still in my brain, hanging on,making my thoughts drip slowly. I can’t think. “Get that bastard out of me” I say.
I had pleaded, begged, made deals and cried out to God to make the pain stop. He was answering my prayers in His way.
I wake to my Aunt and mom, husband, the doctor. Is it afternoon, Friday, Saturday or hell? He ask how my staples feel? How is my ostomy? He lifts a corner of my gown and I try to look down. There through a clear bag I see it. I don’t know what it is, or why it’s there. Why I feel like I have been hit by a bus. I have been so sick for so long. I close my eyes. I don’t have anything else left. Nothing. I have been sick for so, so long. There are no answers. I have no questions. The deep throbbing in my left side is gone. I feel some relief and I sleep.
When I wake in the evening, see my Aunt standing there with a sweet smile. Two friends from our church are there and one is playing my favorite worship songs on his guitar softly, then he smiles. I try to cry, but still have nothing left, I realize I have missed the rehearsal dinner. No, this can’t be reality. People slip in and out, and just like a movie, everything is slow and foggy. I can’t think. I slip back to sleep and the drug induced darkness of my mind.
Friday & Saturday pass. People stop by, preparing for the wedding. They stop in again, and again, before the wedding, on the way to the reception My sister in law and brother come by in their wedding attire, she gives me her bouquet and I weep. Much is the same, but I still don’t understand really. So much morphine in my body makes things difficult to understand. I tell people to stop stepping on my rods and cones or I won’t be able to see colors. Rather then laugh (like we do now) my sister in law gently tell me they won’t step on them. More church family come by on Saturday. One dear friend brings me a purple boa, a tiara, I think she painted my toenails. One sits and chats with me into the night. I was never left alone that Saturday. God had sent more angels.
Friends continue to stop by. I have lucid, drug induced, real, like really real dreams. I’m at the most amazing art store in New York with friends, I have gone and found every supply I ever wanted. I wake to see a dark hospital room, a clock ticking at 3:10. I start to cry. I can’t stop. I want to be anywhere but in this bed, sweating, sobbing, weak and unsure of when this ostomy is coming out. To my brain, it will be gone when I get out. Whenever that is. No one has said.
There are strange moments that terrorize me from my stay. Besides of never hearing of an ostomy and waking up with one, the next is the day they took me off morphine and put me on Tylenol 3. In the middle of the night, I awake. It’s 3:30. I am going to puke. Which at the time, I didn’t think was weird, but I hadn’t eaten in days. What was left in me? I call for the nurse to bring a bed pan. I start to wretch. I mean, not like a drunk college girl, but wretch. From deep inside, greenish-black comes out. I know what hell smells like, because it came out of me. I shake and vomit for hours until my throat is raw, and my abdomen even more sore where the large, long incision is. When I finally lay back it is almost 5:30. I can’t have anything but watered swabs and sips of water. I ask the nurse what it was. She tells me as gently as she could it was bile. I am disgusted. In fact, I rarely have shared this with anyone, but I am moving on and I hope that if you’ve ever been in your own personal physical hell, know that I have been there with you. The other two are similar. Once was simple really, I watch and felt them run a picc line to my heart for nutrition, that was sooooo not fun. The worst, the one that still sends a shutter down my guts was the two drainage tubes in me. As my surgeon pulled them out slowly, they bumped across my organs. I can still feel them today and I am a firm believer that God never intended for plastic and rubber to touch my inner guts. It so scarred me that when they did reverse my ostomy 10 months later, I begged my doctor not to use them if he could avoid it. He didn’t.
When they sent me home after 10 days, they left in the picc line, the surgeon was gone for two weeks, they didn’t set up home health care, I had no wound nurse tell me how to care for my ostomy and they put me on darvacet, with little food in me. (Needless to say I vomited green-black the next day and wound up in the ER on morphine for several hours. It is my drug of choice, and it sends my brother and sister in law into fits of hysteria when I talk to them while high. I do say the most ridiculous things)
This is not the end of that story, I could go on and on. I just had to get the gist of my story out. I’ve had counseling, talked to friends, church’s, classes in college, colleagues and such. But I feel that I need to lay it out there raw, and open, with some of the gory details I often hide, that maybe in writing it down, I can let even more of the pain go. Maybe it will help someone else someday.
Know that they reversed my ostomy after 6 months of chemo. No, I didn’t lose all of my hair, that was the least of my problems compared to no taste buds( I could only eat ramen and fruit loops, can’t even look at them now), bloody noses and bloody ostomy, chemical burns from the inside out, neuropathy (that is still here of and on today in my hands and feet), so cold, so sweaty, couldn’t eat ice cream(eek!) or even touch anything cold without gloves(including milk jugs), nausea, the eyes that water so much, my skin is raw under my eyes, and so very, very,very tired and trying to figure out how to live with my ostomy. Drugs like neulasta and aranesp, to keep me well, setting up in my bones like cement, I walk like I’m 87. I don’t know how I get through it. I cry every time I have to start chemo again, pure aniexty. I tell my mom, I don’t have strength to pray and afraid God won’t help me if I don’t pray. She reminds me God is too like a mother, we don’t wait for our child to tell us they need us when they are ill, we are simply there for them as is He is for me. I come through chemo stronger spiritually and more aware of Him and His love and presence.
There are little triumphs. Something, something so important, something I am most grateful for is to the doctor from MSU. I don’t know his name, I don’t remember much about him at all, I wanted to freeze some eggs. But there was no time. I am given November to heal and chemo starts December 7th. He suggest giving myself a shot in the belly before chemo week. It’s new and not yet proven to work, but he thinks it will put my ovaries into a state of menopause to hide them from the toxic drugs that are killing me slowly along with any stray cancer cells. Chemo drugs love the rapid new cell growth of cancer, as well as cells that renew quickly, your tongue, intestine lining, and my eggs and uterine lining are at risk.
I have waited seven loooooooooooooong years to see if that doctor was right. After letting my body heal, surgery after surgery, chemo and surgery, a rough pregnancy and birth, that doctor that gave me the shots should know they worked in His plan, and God’s delivered to me a second son.
Life is not perfect, I am still physically a bit of a mess, I’m not so loving the stretched scar tissue that fills me, the still routine colonoscopy (next month), but man, I am so happy. Remember, I said I had stopped taking birth control before they found the cancer. My plan was to have another right away. If I had been pregnant, I would had had to abort for chemo, or lost it during surgery? See it was my plan, not God’s and even though it has caused me much distress and sadness over the last years, when I let go and gave the whole baby thing to God (we tried earnestly for 14 months), ta-da! Pregnant!
So, having Nash Tater around makes this anniversary so different and special, maybe that is why I can’t stop crying this week. I never thought I’d get to meet him, he is so beautiful and special, a true miracle, I am so very blessed.