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!!!
Present Day
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,
Nancy
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Nancybib
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What an amazing story. I don't think I've taken it all in and will have to read your post several more times. Thank goodness for your nephew. Have I read correctly that all these problems were caused by Avastin, albeit that doubtless with better care you may not have suffered so much?
I admire your positive attitude to life. Life is very definitely not a rehearsal and we must always remember that. I remember telling my hubby years ago, "I don't want to get to 85 and say, remember when we nearly went to......." It was actually an advert from a holiday company I saw on the underground years and years ago, picturing an elderly couple reminiscing over a photograph album. I was youngish then and for some reason the words of the advert have stayed with me all this time. I definitely don't want to "nearly" go somewhere.
Take care and I truly hope your fistula matures soon.
Nancy, I am so very sorry you've gone through all this, I think about you often. You are one tough lady and your fighting spirit comes through. Thank you for the update and for the way you have shared your experience both now and in previous posts. It is because of you that I have closely monitored my blood work and blood pressure while on Avastin. It's been on hold since August and I am currently seeing a nephrologist to rule out kidney disease.
Your words about life are very wise, yes these challenges make us appreciate what's really important. I'm glad you have a strong support system.
I'm wrapping my arms around you with gentle hugs and healing vibes.
Hi Nancy, it was so good to see you pop up here because I have thought about you so many times and wondered how you were doing. I guess I have my answer! I too have had kidney issues from Avastin. I am on my second set of stents and the highest my creatinin level went was 14. I also had a urologist who didn't listen to me or my husband so I have changed doctors. I am stable for the moment and just started on taxol because I apparently have a new small tumor pressing on my uritors which is what shuts my kidneys down.
I am sorry that you have had to go through all of this with bad doctors and bad hospitals. Its disgraceful and unacceptable! I have been very fortunate with the exception of my last urologist.
I love your attitude and your spirit and thank you for posting it because it reminds me to live for now, make memories now. Some days are good, some days are not so pick the good days and have some fun! The ONLY thing we have control over is our own happiness. Thank you for the reminder!
Wishing you better days ahead with your new doctors. I will keep you in my prayers. Tracy from Georgia
Your story is very moving,I agree our life is not a rehearsal,which is why I just get on and live life to the full.I am not as young as you,my children are 29 and 30,but I am a Nan that is central in my grand kids life and am relied on to care and love them. They are my life,they are what gets me through and keeps me positive.
I am lucky enough to have been Ned for nearly 3 years,but my onc told me last time my liver function isn't great and we joked about 2 many sangrias on holiday,but, I think there are a lot of side effects no one wants to discuss at any great length,since we are all still surviving.
I am so sorry what has happened to you,but hopefully things will take a turn for the positive,grasp every day you are here,good or bad and love your family,since I know you are loved,
Best wishes,
Carole xx
Hi Nancy
Your story is so interesting and uplifting at the same time. You have been through so much and yet your positive outlook shines through. It's amazing what we tolerate and get through isn't it? Like all of the ladies on the site, my life has changed utterly since diagnosis in June 2015 and I sometimes have to pinch myself when I face the reality of my life now! You are so right above embracing life when we can - I heard a phrase recently "toast can never be bread again" - very apt I thought when dealing with anything in life.
Hang on in there - you are surrounded by love and support and your husband sounds amazing!
Juliet x
Hi Nancy you have been through the mill with your health but you have a fab supportive husband who cares for you. It had to be hard the Gem does play havoc with your bloods that is for sure. Yes we have to make the most of every day enjoy being even looking out the window. Hang in there you are one amazing person
There are many people who would have given up to have had just half of what you have been through this year. It is a testament to your strength of character that you have endured so much and yet still have the love for life that keeps most of us fighting. I don't plan for the future - never have - as I'll miss the now but I have let hubby book a holiday next March. We'll remain in France but it will be by the coast. In the meantime I am on weekly carbo/avastin and I do watch my weekly blood results very carefully. I have a little C reactive protein thing going on but it's nothing major. Thankfully, everything else is good. I take good care of my body now and only put things in it that are healthy. Should have done that when I was young then....
Stay strong my darling and keep that fighting spirit alive.
Nancy- WOW!! You are a trooper to say the least. I have had chemo and my husband had end stage renal failure which led to at home dialysis and finally a kidney transplant. I have had OC, surgery and chemo. i CANNOT imagine having both. God Bless You!! i will keep you in my prayers. You are really remarkable.
Dear Nancy, thank you, thank you , thank you for taking the time to write your post. It couldn't have been easy recalling all you have been thru, and that's so very much. I reread your post 3 times and then said a prayer for you.
The information you gave is invaluable to me. !st: don't pretend or be dissuaded that what is happening to you isn't. I already have experience with being a chronic complainer [took 2 years to get diagnosis] and now, not waiting. I now complain productively. 2nd: I believe that when I think I feel toxic, I am. Stuff is backing up in my system and messing with it. I can't think straight, find words or even speak. I know I can't drive. My eyes are blurry. I always have a stomach ache. I crave candy like crazy. 3rd: I'm going to look up that renal diet and start using it. I'm in stage 3, no point in waiting for 4. You have given very fair warning and I am going to take heed. I had the stent put in on Wed. for the ureter blockage. I felt better Thurs. and now back to tired, sickly, and berating myself for being lazy. No more of that. 4th: live in the moment. Even if that means giving in to just sitting in the comfy chair. Plan, change plan. I am just plain sick and tired of pushing myself. Get this done, now that. Be kind to myself. I believe in miracles too.
I know I am in the best company of bravest, kindest people in the world. The fact that you are willing to share all this information for the greater good is a real gift. Thanks for the present.
Blessings Eileen
Wow what a story.
You are amazing. Your positivity is inspiring.
I’ve asked the question about life changes. How right you are that we should embrace what we have and change the aspects we don’t like.
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