My breast cancer diaries 3: a snail can go to Paris

It is the 8th of november and I am glad to be alive. On the 5th of november I was out of the hospital after being checked in urgently on the 3rd . I remember opening the door and feeling unusually grateful....I go and take my photo with Holy Mary , I put it on the couch while I rapidly put a pillow under my knees and in tears I thank her for saving my life.

I have been misdiagnosed for a month and this almost cost me my life.

The feelings that I have are so mixed and I slowly lose my trust in my oncologist and in the medical system in general. I am in Romania and I do not know if it would have been different elsewhere but let me rewind the story.

I started to have problems with my right shoulder on the 8th of october and my knees got swollen so bad I could barely move. On the 10th of october (Friday) I got seen by an orthopedian who told me that I have bursitis. No blood tests, no x-rays, no scans. Just a mere visual check and I was good to go with a treatment based on antiinflammatory meds. During the weekend my symptoms weren’t better. On monday I received my second dose of chemotheraphy, the same dose as the last one. I got worse. Almost a week ago my right hand got swollen and my third right foot toe went slightly purple. On the 31st of October I was scheduled to do the regular blood tests before my third chemotherapy due on the 3rd of november. My oncologist was for the second time on holiday so a replacement saw me because I asked to be seen because of my swollen hand. This doctor (a woman) told me to stop behaving like a handicapped person and that I only have some muscle strain because she saw me that my posture is not right. She gave me Allegel prescription and kicked my ass back home. I was utterly frustrated at that point. On Sunday , the 2nd of november , my sister came to see me , travelling more than 12 hours with the bus. I felt it in my heart to tell her: I am not doing the third round of chemotherapy, something isn’t right. I called the assistant of my oncologist as I barely got her number on the 31st of october when I caught her speaking with a pacient , telling her to call her. I never had a contact number since I started treatment. I find this appaling. So on Sunday I call her and tell her that my hand is getting worse and worse. She tells me that she has no idea what to do and that I should go to the emergency room. For a pacient on chemotheraphy this sounded like suicide to me. To go into the lion’s den, with my immunity, waiting to be seen, next to other ill pacients. I did not go.

The morning of the 3rd of november I wanted to see my oncologist. When she saw me she said I had to be checked into the hospital urgently because she does not like how my hand looks.

Really? Didn’t her replacement tell her? She also chastised me , telling me that I should not self diagnose because I induced people into error. What? I looked at her and wanted to kill her. She was the one who rushed me to see the orthopedian. She did not look at my knees. She did not do a consultation on me. She just passed me on. She did not do any blood tests. She trusted the orthopedian and gave me the second chemotheraphy while I was swollen and now she plays the upset card on me? I lost my trust in her at that very moment and I know she will never get it back .

Guess what? I have developed a very rare alergic reaction to chemotheraphy: autoimmune vasculitis. I have been having it for a month . Untreated. I received the second chemotheraphy while having this reaction. I refused the third chemotheraphy by instinct and this saved my life. Who is to blame? The orthopedian? My busy oncologist who is head chief of oncology and has no time to physically examine her pacients? Her replacement who saw me on the 31st of october and misdiagnosed me for a second time? Who should I just strangle to death?

After reading about this autoimmune reaction I got a sudden feeling of : God, you just saved me! To sit like this for a month was pure torture. I can’t cut an onion in two with my right hand. I was given a treatment with Medrol 16 mg twice a day and Controlog 40 mg twice a day. I am monitoring my toe. I am furious and I am stuck in a country with a system where I feel just another number.

I know that ruminating on who is to blame will not help me. I have no energy to give to useless battles. I have decided already that I will refuse any intravenous treatment, regardless of what my oncologist will tell me. I trust her no more. I am sad to say this and I feel I have lost a precious month and acquired this complication because she had no time and interest to double check my symptoms. Now all she can do is damage repair and wait for results from reumatology in order to decide the next step.

What have I learned from this horrible experience? To listen to my body. I have felt that the orthopedian was wrong. I have felt that I should not go with the second chemotheraphy while being swollen. Should I have been more firm? At this point is no longer relevant as the second chemo is water under the bridge.

In my mind I grapple with this paradox: I came in august healthy as a lion and now I feel that the doctors and treatments are the one killing me and not the cancer. My tumors have achieved complete regression after the first chemotheraphy but my oncologist never inspected my breast until I demanded her on the 3rd of november. Do doctors ever feel guilty? Are they caught in a system like hamsters that have to see 50 pacients per day and have no time for personal chit chat? Who is to blame? Am I guily because I wasn’t too vocal? Should I have had more balls in that day when the orthopedian rushed me? It is easy to judge myself now, but then I was in so much pain and so helpless that I could not fully grasp what my intuition was telling me.

My body is attacking my own blood vessels. I was such a different person 5 months ago! I look at my hands and I was desperate because I was never so helpless. No ability to paint for days or literally wipe my own bottom. Excruciating pain. Inability to walk properly even now because of my swollen knees. I went yesterday on the 7th of november to take my medical leave. My oncologist , again, wasn’t there. Her replacement, another doctor, looked at my toe at my request. “What should I do if it gets worse?” I ask. She looks at me with a smile and she nudges, “ maybe a dermatologist, maybe a surgeon...who knows..”.At that moment I realised that I am alone with God in this. A dermatologist can’t fix broken blood vessels, only a surgeon. I could have said something on the spot but I realised that I need my energy for my own healing more than for fighting a million battles with people who could not care less even if they wear white cotton shirts…..

Only God knows what lies ahead. I walk slowly everyday trying to keep my physical shape. It is a challenge. I know that I am now like a snail. I slowly move at my own pace with the hope to get to Paris unless the cruel medical system will decide to crush me. Isn’t it funny that it isn’t the cancer per se doing any of this nasty stuff now? I wonder how it would have been to receive the diagnosis and just move on with my life , just like those people who receive terrible news that doctors can’t do anything to them. Who knows? This thought also crossed my mind.

I know I need to move. Slowly. Like a snail. And get to my Paris.