What it’s like to wake up one day and not recognize your own life. Living in a fog is all I can relate it to, when you have somehow morphed into this person that is locked into a regiment of daily care for someone you have known your entire life. Someone you looked up to, played with, fought with and called Sissy.
Over the years my sister and I grew apart in many ways, yet we both knew that when the chips were down and we needed each other we would be there no questions asked. The old saying “blood is thicker than water” comes to mind. She was the adventurous one, living on the edge, rebellious and the party girl. She was an excellent seamstress; she took after my mother and grandmother, an accomplished hair dresser, and all around creative woman. Her free spirit had her always chasing the next job around the corner, where the grass seemed greener. When she was in transition I would expect and get the proverbial call to help bail her out. She eventually married and even that didn’t settle her as you would expect, lasting only 8 years.
My sister started having occasions where she would get sick, feeling nauseous and light headed so bad sometimes she could not make it to work. Because she worked just under the required hours needed for standard employee insurance, she could not afford the higher premiums for coverage; therefore all doctor visits were out of pocket. This is one reason why she overlooked her illnesses as much as she did.
One day I got a call that she was at the emergency room having severe nausea and lower back pain. Of course, I rushed to comfort her until they called her back to be examined. On that night we waited nine and a half hours partly because she was not acute or considered in a state of emergency, but most obviously because she didn’t have insurance coverage. When she was finally called back the doctor asked her a few questions and suggested if she had just taken some Rolaids her pain would have been gone by now. I was, to say the least, disgusted with how they treated her and more importantly how they demoralized her. My sister had no energy to do anything except cry so I stepped in to resolve the tension and remove her from the situation. Little did I know this was just the beginning of a very long road of repeated scenarios.
I knew there was definitely something wrong with her so I drove to another hospital and immediately asked to speak to the Director, in hopes of explaining what we just went through. Well, I didn’t get the Director, but I did speak to someone that with one look at her took her back to a room instead of making us wait in the lobby area. Within 3 minutes there were 4 people in her room starting various procedures while I was filling out the paperwork. It was an amazingly different of experience than the previous place. She was treated for a UTI and given medicine and released all in less than two hours. Something still wasn’t right in my mind about the diagnosis, but I’m no doctor. My sister did finally get feeling better and life went on for another couple of months before another run to the hospital. She had started retaining water, swelling, and had shortness of breath. Once again we encountered the same issue where they simply treated a symptom and sent her on her way. Her illness soon progressed to a point that she couldn’t work. Insurance or not, she was a good person and deserved better medical treatment than this. I had enough. Although I was a single mother running a very successful business, I was going find answers that no one else would or could. It seemed no matter what I did to help, nothing was working. I was not going to give up, there had to be a way to make someone listen, someone who gave a damn about my sister and the person inside the sickness.
My sister’s living arrangements soon became difficult since she was too sick to work and out of money, so I made the decision to move her in with me and continue to seek out help. Well, that caused more family emotion as my daughter was a young teen and started showing resentment in the amount of attention needed from me for my sister. Over the next year or so we made several trips to the hospitals for quick fixes, as she would call them, all along knowing this is the last place she wanted to be. I then learned St. Vincent’s Hospital was organizing a mobile unit to visit the surrounding counties and upon case approval you could become eligible for health care free of charge. The services were provided by volunteer doctors who saw the need for this type of compassion. I immediately made calls to the “We Care” program to find out where they would be next and made sure I had my sister up there 3 hours early in hopes that they would see how much she needed them. We arrived to find 16 people already in a line that was growing. We signed in and started the process of filling out the seven page application when one of the doctors who was taking a break from inside the unit walked up to my sister, touched her hand and said, “That’s not necessary, come with me, Dear”. I could not hold back the emotions when he reached out to her so caringly. I just knew my prayers had been answered. On the mobile bus unit there was basically a full hospital setup. He began the exam and we were eventually told exactly what was wrong and how they were going to help her become well again. He hugged my sister and me and handed us some papers and said, “I will see you very soon, try to keep smiling”.
It would seem that after all this time of being sick and finally knowing exactly what was wrong with a plan soon in place for treatment, there would come an overwhelming feeling of relief. However, that was not the case. My sister was diagnosed with renal failure and to be specific “focal- glomerular- segmental- sclarosing nephritis” or at least that’s how I think you spell it. All I know is that it is a mile long. The doctor sent us directly to St. Vincent’s hospital where they had called ahead to pre-admit her so when we walked in she already had a room ready to go to. After check in they started tests on her and I think that’s when I broke down and cried for the first time. I’m not sure why; was it relief, exhaustion or sheer fear or all of the above? Well, one thing was for sure, she was in the hospital now being treated for renal failure and not turned away with some lame excuses. This is where we began to learn about disability benefits and how to apply for the help she needed. Many people live with kidney issues and renal failure, so she would too, so we thought. They started her right away on dialysis. What a difference almost immediately in her color, her skin became soft again, her alertness improved. Although she was not happy with the process, you could almost see the tension melt away after the first treatment.
After an extended stay in the hospital she was able to come home with a regiment to follow that included a whole new way to eat and drink, many medications, and visits to the dialysis center three times a week. Okay, some may not see the humor in this, but for anyone that knows anything about going through dialysis they use very large needles and my sister has always been deathly afraid of needles. Needless to say in a sick way it was a sort of sweet revenge for all the things she had put me through over the years. That funny thought only lasted a second then it was quickly erased from my mind as I knew she was going to become very close to this machine that kept her alive and the need to be stuck was inevitable. She was getting along very well for several months adjusting to the constant needle pokes. Finding ways to numb the spot prior to being poked became a routine for us.
I guess at some point you start to question is this all worth it, because she did, and went through a horrible emotional breakdown refusing to eat right or cooperate with the doctors and me and making life hell to put it bluntly. I think she began realizing that her life was not going to be much different from now on and she needed to reside herself to that fact. She spoke to her doctors about consideration for a kidney transplant. She was still healthy enough to undergo a transplant, but the process was long and there were many things she would need to change to even be considered for the program. We made the trip to Shands Gainesville and had a very in depth discussion about every detail of kidney transplantation. After a lot of thought she decided life had to be better so she felt this was her only option.
Part of the process now was to go through a series of doctor visits to receive a “clear to proceed” from each specialist that cared for her - primary physician, obgyn, nephrologist, etc. While she started her visits, I started the workups to see if I could be a donor. I received the news that I was a perfect match and was prepared to help my sister right now, today, let’s do this. My sister told me no! I was devastated, I did not understand, how could she give up, how could she say no? She said it was because of my daughter. Kidney disease runs in our family, what if something happens to her she said, what then? You will not have a kidney to give her. I will not allow that. And the subject was no longer up for discussion. I had to respect her decision and the reason behind it, but it was very quiet around the house for some time.
As the approval letters from doctors were coming in, we noticed we had them all except the obgyn. Instead of issuing a clear to proceed letter, my sister was asked to come back in for another consultation. They explained one test was inconclusive and required another biopsy. After a month of waiting, we finally were able to visit the office for results and hopefully get the letter she needed. We arrived and it wasn’t five minutes until we were called back. My sister was anxious, yet nervous; I think she sensed something wasn’t right. Sure enough, the doctor said she could not clear her yet because she needed to have further testing and surgery to take further biopsies. One day, two days, a week, a month went by and with multiple phone calls to find out when we were going to get the surgeon referral, there was still no reply. Enough was enough, so we paid an unannounced visit to the office to find that the doctor was obviously avoiding her because she had royally screwed up to put it bluntly! Eight months earlier my sister was in for a normal visit and got her Pap smear exam and a couple biopsies etc. She was later told that all tests were normal, but apparently they were not as the lab results would later prove. I called our family surgeon and explained the situation and asked his help to get my sister’s records and get her in as soon as possible because from the sound of things it wasn’t good. He was more than helpful and she was in surgery three days later.
That morning of the surgery we were all quiet and made small talk just to hear something besides dead silence. We were told that the surgery would take an hour or so and then the doctor would come out and let us know the results while she was in recovery. That hour went by, another hour went by, a third hour went by, and the doctor then led us into the consultation room. Our worst nightmares had been realized. My sister had stage three colon-rectal cancer. If it had been addressed and treated when it was first tested, her odds of survival would have been 90% higher and she could have had a chance for a kidney transplant. Even if she was lucky enough to beat the cancer, the transplant program requires you to be cancer free for five years.
Trying to hold back the anger and resentment, I did the only thing I knew to do…I kissed my sister and stayed by her side that night and for the next three days at the hospital. She was in no shape to come home, there was excessive bleeding and she was considered high risk. The doctors removed everything they could without nipping the colon but it was very deep so there would be radiation and chemotherapy to follow. I don’t even know what to say at this point, I watched my sisters’ face and no words could express what she was saying without saying a word, but I knew. When she finally came home, she called a family meeting with everybody. She told us that she had thought about things and that she was not giving up, that she would beat this and it was going to be okay. So now our focus was on the cancer. Twelve weeks of chemotherapy and four rounds of radiation were ahead.
She started the radiation treatments almost immediately after she was healed from surgery. Over time, between the radiation and chemotherapy as well as dialysis, she could barely walk or lift her head from the pillow. It became a daily chore to clean her and get her to the bathroom and feed her what little she could keep down. She had no energy and remained on medicine for the pain which didn’t help with her awareness. After the second round of radiation, she started to bleed more than normal so the doctor said to bring her in. It turns out that the last round of radiation had perforated her intestines and she was bleeding internally. They started a transfusion and 32 units of blood later she had color again. Then it was time to fix the problem by cauterizing what they could. That seemed to help for a while but eventually became an issue over time.
Six months after she began her cancer treatments we finally received the good news, the cancer was gone. A miracle none of us thought could happen. She is one tough woman. She beat it against all odds. Although she would never be the same as she was before the cancer, this was okay with her, she was alive. Her physical appearance was unimportant, her hair was almost full gray, she had scars from head to toe and everywhere in between, but she was alive. Life was hard on all of us; it took its toll on my sister, our family, on me, and on my daughter. We knew our lives would never be the same but little did we know what was still ahead.
Four months later my sister came to me before I was to take her to dialysis and said “Today I have a choice, I can live or I can die”. I knew she had not been feeling well but that was an everyday occurrence and some days were better than others, but today was different. She said something is wrong again and “I know I am not going to get well from this one” so why go to dialysis. What do you say to something like this? What can you possible come back with to show support and give hope when you are sobbing inside silently? But, I managed to smile and say “Okay, let’s do this, let’s go to dialysis and I’ll call the doctor and talk to him and let him know you don’t feel right, how’s that sound”? She agreed and I called and got an appointment after her dialysis treatment. The doctor sent her back to the hospital to run some lab work and she was right. There was something wrong. She had infectious endocarditis - contracted from her previous surgical procedure that had settled behind her heart in the valves. This was the beginning of the end. She had open heart surgery to have one valve replaced and one repaired. Words cannot say what I felt when I walked in the recovery room after her 11 hour surgery to see her hooked up to every machine known to man and her feet purple from low circulation, her skin was yellow in color, her face swollen so badly that I could barely recognize my own sister. I broke down and dropped to my knees and cried. I couldn’t take it; I had to get out of there and now!
She was in the hospital for thirteen weeks, touch and go the whole time. Then, finally released to a rehab facility where she was treated with physical therapy and so forth. There were more complications and another hospital stay but my sister eventually beat the odds again and was able to come home. The homecoming was somber this time. She was very frail and quiet. She was unable to use to the bathroom normally, was unable to bathe herself, dress herself, and barely could feed herself; it became a full time job just taking care of her. I might add that I brought her home three days before the biggest hurricane Jacksonville has seen in years hit. I was left with this frail woman, stitches running from her belly button to her collar bone and out each direction, on oxygen, her immune system was horrible. Then we lose electricity for 6 days. I spent the better part of the day trying to find a hotel that had emergency power for her oxygen unit, since I knew eventually her bottles would run out and it would be a nightmare to coordinate getting refills. I was scared to death of what was happening and afraid of her getting an infection and losing her oxygen, but we made it through that challenge like every other one.
My sister was on twenty six different medications and oxygen; she took pain killers around the clock and then some. She finally had had enough. Her body could not handle any more, she was tired and frail. The valves in her heart started leaking and she was not strong enough to make it through another surgery. Her circulation was becoming so bad that her legs were turning black and on the verge of needing amputation. It was only a matter of time, and we were praying that God would take her and let her rest and be free from pain without further suffering. In time she could not communicate and did not know what was going on. I am thankful for that. She finally let go and passed away. My sister was forty five when she died. The strongest, bravest woman I know.
I will say that this was the most difficult thing I have ever dealt with in my life as I was juggling a career and raising a teenage daughter who did not and does not to this day truly understand what it took to do what I did. It was Hell! It was filled with fear, determination, confusion, anger, sorrow, resentment, isolation, honor, exhaustion, pride and most of all love. I felt humility through her and for her, I felt pain with her, I cannot for the life of me understand how she made it through all of this for so long, seven years. No one should have had to suffer through what she went through. She suffered enough for ten people. . I was honored to have had the chance to be there for her when the chips were down. And I would do it again.
Through all of this, I became someone who just went through the motions day in and day out, blocking out the things I refused to let in. I figured whatever she was dealing with was a hundred times worse than what I was going through so just suck it up and deal with it. I don’t really know how I did it. The endless nights and days at the many hospital stays, the sleeping with one eye open waiting for the next emergency to happen, the juggling to be there for my daughter while still running a business. It was like I was living someone else’s life. This was not my life, how did I get here? Who is this person staring back at me in the mirror? It was not me anymore. It was like living in a fog.