If I Am Not Nuts By Now
How Am I Dealing; It’s Been a Long Time
Cancer Drug Causes End Stage Renal Disease
I have not blogged since the very beginning of the year. I got wrapped up in major medical issues and the continued fight for my life. It has been a struggle; it is a struggle but I am determined to keep pushing. Let’s start by talking about last winter.
February 2017 – April 2017
The beginning of February I began feeling really ill. I once was walking 2-3 miles a day and I was to the point where going from the chair to the kitchen became a struggle. I became very weak, lethargic, loss of appetite, etc. I was admitted to the hospital in mid-Feb for an electrolyte imbalance. I chose the hospital I went to but found a little too late that they were not an A rated facility like my cancer center. I treat at MD Anderson Cancer Center in south jersey. I am usually very outspoken about my care but I let this one slip by and before I knew it I was in kidney failure! The nephrology team never took serious note of my ever rising creatinine levels. They refused to do a kidney biopsy. In fact, I quote, “Why bother, if they are damaged, they are damaged.” Your creatinine levels need to be maintained while on chemo, as due all of your other blood levels. If your levels begin to rise, we need to throw up the red flag and dig to find out the cause and in the meantime stop the chemo drug, which MD Anderson did but due to the lack of care I received from the nephrology team, the kidneys failed rapidly. The not so intelligent nephrology team at this hospital kept discharging me home blaming the electrolyte imbalance on my chemo. It wasn’t the chemo. I was going into kidney failure. This went on for 7 weeks. In the meantime, my nephew, who happens to be a doctor spoke to me and felt I was bleeding from somewhere. That there was some kind of, possible, bleed surrounding my kidneys. Here he is 3,000 miles away and pinpoints the potential problem. I took what he said and found a new nephrologist. As like any new specialist, you have to wait a few weeks to get in. So upon my 4th admission in 7 weeks, my creatinine level was now a 4.22. I was so ill. I couldn’t eat, barely urinating and the smell of urea coming from my body was nauseating and my blood pressure was through the roof. My body was poisoning itself and my kidneys were shutting down. I was put on about 20 different blood pressure meds in this time frame too. Nothing was consistent. I was discharged the first Monday in April with a creatinine of a 4.22. I was extremely ill and still receiving chemo. Chemo and now kidney failure – Wow: talk about a punch to your gut!!!! That Wednesday after discharge I met my new nephrologist. New doctor; new hospital; new experience!!!! My new doctor asked when my next follow up would have been at my previous nephrologist. I told him 4 weeks. He looked me straight in the eye and told me my kidneys did not have 4 weeks. He felt I was suffering from permanent kidney damage. A rare condition called thrombotic microangioplasty brought on by the toxic drug Avastin. Within days, I was admitted to the hospital had an emergency port put in my neck to start dialysis. In the meantime, he did a kidney biopsy to prove that his theory was correct. Since April of this year, I have endured 14 surgical procedures to try and get a fistula up and running. A fistula is where you undergo surgery to have a main artery and vein sewn together to perform dialysis. After the surgery is complete you must wait weeks for it to mature to the point it is usable. Unfortunately, the first fistula failed requiring multiple surgeries to try and get it operational. In the meantime, another perma-cath was placed in my chest so I can receive dialysis 3 X a week. Without it, I will die!!!! Since, I have had another fistula put in another part of my body and now waiting for that to mature. I thought cancer was exhausting. Kidney failure is a full time job. You are constantly juggling your fluid intake. Oh I didn’t tell you – my liquid intake is about 36 ounces daily. That includes anything that has liquid; including fruit. My diet has changed completely. They call it a renal diet. I call it – Bullshit; I want a giant candy bar. Milky way or 100 Grand please. In the meantime, I am still in cancer treatment. Let’s all remember that is why I am on this journey to begin with. In fact, I just finished my 8th round of Gemzar today. While still on serious chemo treatments, I am receiving dialysis 3x weekly in addition to about 14 blood transfusions since my kidneys have failed. Between the chemo and the dialysis, I am having trouble maintaining a normal hemoglobin level requiring transfusions every few weeks. Do I ever feel good? No. Do I have my good days? Yes, I do but cancer and kidney disease change your life. They change your life; what you do, what you eat, energy level, etc. but at the end of each day my husband tells me and I quote, “you are still the same beautiful person I fell in love with all those years ago” and then hugs me with a kiss. This situation can be very debilitating but he tries so hard to pick me up and remind just how much I’m loved!!!
Let’s just say I am holding my own and taking conventional and non-conventional treatment to see if we can make a difference. It has been a very rough year but through the ability to focus on the important things in life and appreciate the little things I continue to be Blessed with so much love and support. I have no idea where this journey will lead us but I am determined to push forward. I am exhausted and beaten up but I’m still me. I may not function on a level I once did but I still function and have learned to make many major adjustments to a once wild and crazy lifestyle. It is 6 months since my kidney diagnosis and I am trying to explore any and all options to live life to the fullest. Who said being home on a Friday night can’t be any fun all snuggled up on the couch in my pj’s typing an entry.
If I can just spread awareness on life. Enjoy and embrace. If you are not happy with any aspects of your life, change it. You are the only one that has the power to change it. Remember, this is not a dress rehearsal. You only die once but get an opportunity to live every day. Don’t waste it on things you can just let go.
Remember, life is not keeping a score card. You can never get back time. You can be rich at heart with a life filled with love; just treasure the memories.
I am hanging in there! I have an amazing support group and my husband is truly the most amazing man in the world. It has not been easy for us and surely not easy for our girls. Keeping the faith, hope and belief in miracles alive.
Keep the words of encouragement coming.
Love ya all,