The First Three Months After Kidney Transplant

11270574_10205781819058001_4961367288152030148_oThey say the first three months after kidney transplant are the worst. Some say it is worse than dialysis. After reading the kidney forums online, my husband had told me it was true. The majority of transplant recipients not only agreed with these statements, they shared personal stories to back them up. One man had screamed at the doctors to take the damn thing out and put him back on the dialysis machine. I shook my head and vehemently disagreed. Nothing was worse than life on dialysis. It was no life at all.

“This isn’t going to be easy. Are you sure you’re up for this?” The interviews and probing questions for transplant failed to discredit the online forums and comments from patients who had been there and done that. Every Neurologist confirmed the inevitable truth. The truth I refused to believe – this was going to be hard as hell.

Today, I can honestly say with conviction and experience that it is true. The first three months after transplant are the worst. I have never been so emotionally stripped. Worst case scenarios play hide and seek. Ridded of short term memory, my mind allows insecurities to run amok and reign supreme. Pediatric nightmares re-play in real time.

Labs can change on a dime, and do. The toss of that coin is consistently inconsistent. In one day for blood work and back the next. Then it’s two days or three, maybe an entire week – only to start the cycle all over again. I refuse to watch one more re-direct. The only comfort was a man who once sat two seats down from me cursing at a Phlebotomist. I am not alone. As my labs go, so do my meds. Twenty some odd pills with a plethora of side effects, results, and consequences add to my fragile emotions and mental state of mind. What a ride.

I could go on, but that doesn’t feel right on a day like today. I hit my three month mark. It has been exactly three months since I received my husband’s kidney. It was his anniversary present to me – twenty-four years together. I was too sick to give him a present. Three days ago I received another gift. My labs showed no signs of kidney rejection.

I started writing again. The fire to finish editing my novel has returned. Back issues of Writer’s Digest that had been left unread are now marked up. The other day I picked up a book and focused long enough to read it. I’ve been flipping through my gourmet cookbooks again since I am no longer shackled to renal diet restrictions. I am beginning to enjoy the things that made me want to get out of bed and live. I am now three times cancer free. Thanks to my husband, I have a new kidney and a second chance at life. Believe me when I say, It was worth those three months.

I Am a Childhood Cancer Survivor Forty Years. It is Never “Over.”

Little Princess in cotton field

September 4th is right around the corner. It is Childhood cancer awareness day. 41 years ago I was diagnosed with stage 3B Hodgkins. I was 7 years old. I was a guinea pig on experimental drugs while suffering from shingles and then viral meningitis. My years of treatment included radiation and chemotherapy cocktails created from the same serum mustard gas used in WWII, and the Pink Periwinkle flower from Madagascar. Cancer treatment was archaic in the 70s. Brutal. I watched all of my little Leukemia and brain tumor friends die. I am the only child who survived our group.

 

I was left with huge physical and emotional scars. Radiation left me sterile. I never went through puberty. My teenage years were hell. I was pulled out of P.E. and got breast implants at age 16 because teasing was so bad. At age 21 I was diagnosed with Thyroid cancer. At age 46 I was diagnosed with kidney cancer in both kidneys. I suffered renal failure. Both kidneys were removed. I spent two years on dialysis. It was no way to live. Two and a half months ago my husband gave me his kidney for our 24th wedding anniversary. It is such a blessing, but I am still struggling. It is still a fight. Slowly, there is progress, but I find myself re-living the haunting memories of my past. I try to be strong, but I am not. I am the terrified child inside.

 

So the next time you are tempted to tell a cancer survivor to “Get over it,” remember that it is never over. The side effects of childhood cancer never end. They are decades long. They creep up and blindside me. Again. And again. And again. So please get over your discomfort when cancer fighters and survivors must talk, must weep, must grieve. We are broken. Often shattered. It takes an uncertain amount of time for us to pick up the pieces of shard and rebuild our lives. Your thoughtless words only add to the emotional scars we carry. Please spend less time trying to shut us up, and more time spreading the hope because your friend, your co-worker, your family member, or the love of your life survived.

 

I am still here. I am surrounded by the most precious guardian angels that went before me. They are etched in my memory forever. And some day, when it is my turn to go, I will embrace them with tears and laughter. I know it.

Gratitude, and the Most Peculiar Things

images Whew! Thanks to eight brand new scars, I made it! A year ago today, I was in the hospital fighting for my life. I missed Thanksgiving, Christmas, and New Years. I spent the holidays in a hospital bed, convinced that they would never let me out. My muscles had atrophied. My legs and lungs fought for every slow step. I couldn’t swallow. My nourishment came from a feeding tube. I truly thought it would never end. But the worst of it did – eventually. My last surgery was  August 2014.

Kidney failure was a complete blind side. Dialysis, like a thief in the night, had stolen everything.  There was a lot to be upset about. When I left the hospital I had lost the ability to work, had lost my faux business Lara Lazenby Designs, and was unable to do simple tasks like cooking dinner, taking care of my orchids, or driving a car. I still brush my teeth sitting down or I’ll fall over. Heck, the slightest breeze can knock me to the ground. Sadly, dancing is still out of the question. I spent the entire season of So You Think You Can Dance popping and doing leg lifts on the couch. I could ramble on with a list of complaints – of gripes and groans and reasons why it’s not fair. Having said that, I wont pretend to be a saint. I have complained plenty. But this holiday season, Gratitude, has come in the strangest, most peculiar little things.

I have come to love the blue handicap placard hanging from the rear view mirror. Some days I can barely walk across the room, let alone the parking lot.

I love the wheely-carts at the grocery store.I used to think they were for old people. I’m eating my words now. Humble pie is sweet when I’m just too weak to push a big cart around the entire store.

The stool my husband set up by the stove. Now I can stir and sit. I’m telling you, this was bloody brilliant. I love that freaking stool. I used it today while making pumpkin pie. Mm!

When my scars healed up, Steven and I went on the hunt for  a rescue dog. After leaving several places in tears (I’m emotional that way), we found her. This little dark brown dog sat in my lap and draped her head over my arm. We’ve had her two months now and I can’t imagine our lives without Shanti. That is the Sandscrit name for “Peace.” She has brought that to our lives.

Five days a week, Steven saves my life, literally. It was his idea to start home hemo- dialysis training in October. I’m looking at the machine right now. It sits in the living room next to the television. A constant reminder to me of how life changes on a dime. In-center dialysis was hell  three times a week. Barely enough to live, to drag myself through life. Now we do it at home five times a week with this machine. It’s no miracle worker, but I have a few more good days than bad. This machine made attending the FWA writer’s conference possible, by lugging it along. So, you wouldn’t be reading this blog if I hadn’t gone. I don’t particularly like this machine, but I am learning how to be grateful for it.

Steven, has never complained about the time he sacrifices to be my caregiver, not once. He helps me set up and tear down the machine , he orders all the medical supplies, pokes bad-ass needles into my arm, regulates the numbers and vitals during treatment, and pulls the same bad-ass needles out – all of this immediately after or before a twelve hour shift at the hospital, 35 minutes away. Steven has put things on complete hold to take care of me. ” In sickness and in health”  has never been an issue for that man. Ever. Being married to me? Well, that is amazing. He is amazing, and I am eternally grateful for that kind of love.

This Thanksgiving I will treasure every minute with him. And Shanti. Yes, life is good, even when there is plenty to gripe about.

 

PS. My heart weeps for the loss of my friend Harold Wilson who passed through the veil late last night. Stage IV lung cancer. I’m sorry I wasn’t strong enough to visit you one more time so we could swap bottles of homemade chili. I got my love of Snoopy from my grandpa, Harrold Gnarini. In some ways, you remind me of him. All my love and hugs, Lara