The Confusing Often Scary World of Medicine and Bad Things

Recently after 18 years in my current job I decided to take a new job at new company all the way across the country. I moved from Massachusetts to Portland, OR. Looking back over these past nine weeks I have learned a lot about myself. I now know I was very “star struck” when I took this job. Definitely a, wow they want me, moment and I failed to ask enough questions or the right questions for fear that this opportunity would be taken away. I underestimated how hard this move was going to be on myself and on the life I had built back home. I did not even imagine that after my cancer battle the stress this is putting on my body, mind and spirit would be this overwhelming. Physically I am exhausted, mentally I am tired and career wise I am more challenged and stretched than ever. My life is now work and sleep. Email consumes my off work time and I find myself nose in laptop until bed. 

One reason why I think I did not question my ability to make this move was that I had moved several times before for work and it always worked out. I also never faced the fact that I had cancer. Instead I did what I do and I plowed through to reach the finish line. I grabbed my metal and my water and I moved on to the thoughts of my next great race. 

The one thing having cancer did teach me was to take care of myself. I am doing somewhat of a better job of this lately. Still have a ways to go and I am trying harder and harder each week. One thing I am being diligent about is my three month checkups. I have read, researched and studied and I know ovarian cancer has a very high rate of return. So I found a new oncologist and made my nine month post chemo appointment.
For the most part everything went well. My cancer protein blood test, CA125, was negative again. Hoorah! The dr was very smart and very sweet. He took my hand at the end of the appointment and told me I was doing a good job and that he would “take care of me.” I almost cried because I felt he was being sincere. The funny thing about the appointment was that he questioned some things that were done a Dana Farber. Believe me, he gave credit to their amazing work but asked why we did six rounds of chemo versus three and reevaluate, Why did they not do a test on my tumor that looks for a chemical build up before jumping to Lynch Syndrome. Why did they see the lesions on my spine and not move forward with the MRI when I am saying I have chronic pain. He disagrees that my leg, hip and back pain are post chemo related. So he scheduled an MRI for this Friday to be sure the lesions on my spine are not tumors. He is trying to get my tumor samples to test for the chemical build up on my promoter cells. He is working to help me minimize my surgical menopause symptoms so I can sleep without using hormones to do it. 

I go into this much detail because I consider myself to be a smart women who has been in and out of hospitals for most of my life. Dana Farber is world class at treating and beating cancer and I owe them my life. I begin to believe though that each doctor and each hospital has guidance to treat but that not one of them does it the same. Each feels one belief or scientific discovery is deeper or better than the next. It comes down to three versus six and MRI’s versus chest xrays but really it is my life. It is my life that you are trying to save and I want you to be the best. I am not alone in this feeling. Everyone feels this way. Medicine though is scary and confusing and if you are not dgging and reading then you might not get the best care. You might get what your doctor believes is the best care and that is too scary to bet your life on. 

This move is hard and looking back I wished I had not done it. Maybe that will chnage or maybe not. I am giving myself a year to figure it out. I firmly believe that eveything we do in life teaches us something. I know that if I had not had a new oncologist that I would not have relized how much I need to be my own advocate in the confusing often scary world of medicine and other bad things. 

2 thoughts on “The Confusing Often Scary World of Medicine and Bad Things

  1. I write this slightly tipsy, as it’s been a very bad day. But I need to get this off my chest. In 1978 I was blessed with another sister. Although I didn’t believe at the beginning, it could possibly be a blessing. Instead of a perfectly healthy baby girl, my parents brought home my sister Tami. I was just 8 years old. To be honest , I didn’t need another sister. Had one, and a brother. So I didn’t quite understand why this was necessary. And after taking one look at her, I was confused , scared, and annoyed all at the same time. Tami was born with a bilateral hair lip and cleft palette. She was not at all normal looking. Didn’t act like a normal baby, had to be fed differently. And screamed from morning till the next. Of course at 8 years old then , I now try to absolve myself of my feelings toward her. I spent the next couple of months helping to take care of her. Basically, because I was not given a choice. My mother needed a break after all. I remember vividly, pushing that carriage with the big white wheels and hood around our driveway while Tami screamed. Over and over again. My mom will tell you my brother helped, pfffft, this is don’t recall and my sister Michelle was too little. So it fell to me to take care of her. I resented that job , of course, she was born in early June, so I spent my summer off from school trying to get this child ,who scared the begeebsrs ,out of me to stop screaming. I remember when she spent long weeks at Children’s hospital in Boston. I remember that as both happy times for me, because I could be away from her. And sad times , because I was away from her. Then, it didn’t make sense. It does now.
    My sister Tami, is the strongest women I know. She grew up to be a beautiful, intelligent women who , despite marrying young and it not working out, became an extremely successful women. Raised two daughter on her own and taught them to be self reliant, opinionated and smart. She has put 1 through college already and is now doing the same for the other. By herself! She never got that degree for herself. But, has made a remarkable, comfortable life for herself and her daughters out of pure determination ,grit, but most of all grace. I am so very proud of her. We have had times of closeness and distance, as she has lived in different places in this country, and close. Even when we lived close by one another, ther wasn’t always a strong connection between us. You know how it is, she had her life, I had mine. Raising my own daughter. But I have always loved her. Always continued that feeling of being responsible for her. We have not always agreed on everything. But there was always love. In 2002, my sister Michelle died at the age of 35. She had had multiple sclerosis and died on a camping trip with her own children. I could not begin to explain to you the devestation this left on my family and especially my sister, Tami. She was consumed with guilt for the simple reason of not returning a phone call from Michelle. ( who by the way, ) was always loved, but one of the most difficult, frustrating, stubborn, and lovely people you would ever know.
    Shortly after Michelle died, Tami started having symptoms of difficulty swallowing, inability to eat a meal fully without feeling like she was choking. She started carrying a water bottle where ever she went. We all said, especially me, gotta let go of the guilt! Not your fault! You couldn’t have known. But now I feel it was the beginning of something a lot more sinister.
    Fast forward 2015. Tami was close by in Warwick, Rhode Island. Yay! I was happy to have her near. She was working extremely hard 2 hours drive away everyday. After moving states, she decided to catch up on all her medical appointments she had been putting off. Gyn appointment she had put off for a few years. She had been having some abnormal break through bleeding and thought it was early menopausal symptoms. Luckily her Dr disagreed. She ordered a biopsy. I remember the day Tami called me and said ” they want to see me for the results”. I had worked in the medical field long enough to know that if you don’t get a call saying ” everything is good”. But get, ” We need you to come by the office”. Then that isn’t good. My sister tried to get them to tell her over the phone as she was too busy to go to the office. No go. They wanted to see her. I recall that phone call to me vividly. “This ain’t gonna be good is it? “. I got in my car and drove to her house. We went together to the Gyn’s office.
    You can never ever prepare yourself to hear the word ” Cancer”. She’s 42 years old. What are you talking about? I just kept thinking…she’s 42 for Gods sakes. Then we hear, uterine cancer.” If your going to have cancer, this is one of the best to have. ” Remove the uterus, remove the cancer. “. we left the office, got back in my sisters car. The first thing out of her mouth is, ” I DONT HAVE TIME FOR THIS!” I smiled. Trying to be reassuring. “Well you better make time. And we ain’t screwing around. If your gonna have cancer, your going to the best place to treat cancer.” She had an appoint,net within the next week for tests and week later total hysterectomy. Everything looked good. Do hysterectomy, get cancer, go back to your life. Nothing is ever that easy, is it? Tests showed a second primary ovarian cancer. Now i panicked. Ovarian Cancer. We know the consequences of most ovarian cancers. Not found usually till stage 4 and not a lot of hope. All I could think was selfishly, I’ve already lost one sister, I CANNOT lose another. This is my baby sister. The one I am responsible for. Have been forever.
    CHEMO. Chemo is not your friend. It is a poison to kill cancer cells and every other cell it can find. It is a catch 22. Kills cancer yes. Makes you immunocompromised, tired, sick, in pain, sad, it makes you lose your hair. Which for Tami was extremely hard. I drove her to every chemo treatment. Blood work ,X-rays ,cat scans ,appointments. Sat with her waiting for blood work every 20 days at Dana Farber watching people whom you had seen before looking like they wouldn’t make another week. That was hard. My mind slowly deteriorating on me. My hope slowly fading. My sister was strong. We joked and talked our way through go chemo treatments. The rides up there to Boston talking and joking. The rides home more quiet and somber. After the first chemo and before the second. Tamil hair was falling out in clumps. She asked me to shave her head. Till this day , it is still one of the hardest things I’ve ever done. But we played with scarves and as she looked in the mirror I told her how beautiful she was. And SHE WAS! That was a day of laughter and tears. Most of mine came after she left to go home.
    We got through the chemo. All the while, Tami continued to work. And work hard. Determined to not let cancer determine her life’s path. We had days of sadness and days of pride. I was always so proud of her. Her strength was inspirational. But I was deteriorating fast. The more times I reassured her, the more I crumbled. The more I was her rock, the more the waves were pulling me under. Finally after chemo was done. And till now all these months later. She is in remission. And staying there. Healthy.
    And here my problems begin… I am not. I am still living in cancer mode. All these months later. I am still waiting for that phone call. Shortly after chemo was done and remission had begun, my downward spiral begun. After taking care of my sister for a year, I was now in a very deep dark place. Very deep and very dark. To the point where I knew I was heading for a break down. I knew suicidal ideation so when I felt them. Only I also felt I had no one I could talk to. Definitely not my sister. I didn’t want to make her afraid. She had been through enough. I didn’t feel my husband would completely understand as ” the worst was over”. ” She’s gonna be fine, I promise”. How could he promise that? He didn’t know that. He didn’t see what I saw. So I kept sinking in the quicksand. I didn’t want to burden my daughter. Definitely not. So I kept to myself and my dark, obsessive, uncontrollable thoughts and fears.
    This is where the depression, OCD, and anger gets the better of me. After all those rides to Boston. Late night calls from my sister to reassure her everything is going to be ok. No big bad wolf coming for you! He was coming for me instead. She got stronger. Still some residual pain. But she got better, stronger, and determined to beat this cancer and get back to the living. Meanwhile, I was thinking of not being able to move. The fear of loosing her so great , I crumbled. Like the runner who after a long marathon crumbles to the ground in a heap. That was me. Then the surprise I could not prepare myself for. Tami had been offered her dream job with none other then Nike. This is what her whole lifes work had been for. Only, in case you don’t know, Nike is in Portland, Oregon. The other side of the country. ” I can’t go to Oregon I can’t be there if she needs me.
    But I felt so betrayed. I know that may sound selfish. I couldn’t process it either. I was happy for her fulfilling a life long dream. But I , I ,I was dying inside I was diagnosed with major recurrent depressive disorder, OCD and Ptsd. And she was going to Oregon. She was in remission and I was stuck in hell. And no one could help. I also didn’t tell her how bad it was. I didn’t want her to second guess her dreams to help me. But I felt a level of confusion and betrayal that I feel so guilty about. Even now. I am angry. I am hurt. I am still stuck. Our relationship has suffered immensely because of my hurt. And for that i am so sorry. I love my sister with all my heart. I am just stuck in a place of un forgiveness for abandoning me in MY time of need. Yes I know that sounds horribly selfish, and maybe during therapy I will get past this.
    But most importantly, I want my sister to know I would do it all again tomorrow if need be. I love you with all my heart and soul. And think of you everyday all the time. Hoping you are taking care of yourself. And loving you as no one else but sisters can understand. I ask for your forgiveness. Even though I may not be ready to receive it.

    I love you more! ❤️

    Liked by 1 person

  2. Stopped over to your blog to see how you are doing Tami. Even though you wrote this last summer, I was gripped with what you have had to face. This would be so very difficult.

    I have heard of Dan Farber up here even in Canada. Sincerely hope and pray all is well.

    Carl

    Liked by 1 person

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