I Have Walked in Your Shoes

Summer of 2008 —— with a blue sky overhead muted only by the haze of the rising humidity becoming nearly oppressive as temperatures climbed. A summer day to be remembered.

When one of the children visit it’s a happy occasion, time for gathering, laughing and enjoying the day. Yet for whatever reason a feeling of uneasiness flooded me. My daughters got out of the car, my son in law sat for a moment in the drivers seat then slowing got out – they stood there in the driveway waiting for us to come to them. Some is wrong, very wrong.

“We have something to tell you.” Rachel said. ” It’s Jesicha.” Jesicha stood solemn, looking downward. ” She just found out she has cancer.” CANCER – that word no one wants to hear, but that word that is heard too often; 2 or out of 3 women will hear that word, that makes it way too common. ” Her doctors say not to worry, they will get it all. She was lucky to get into one of the best doctors in NYC. He knows what he is doing.” The last I knew she was seeing a doctor because she thought she had Lyme disease; how did it all go from Lyme disease to breast cancer? Yet, here we were with the bright hot sun pressing its heat into us and we did not even notice. The world had stopped. For us.

How is it that we have come to feel safe with the words – ” I know what I am doing – I will get it all – you will be fine” out of the mouths of doctors? Our learning curve was just beginning. I wish at that point the future knowledge I have was present at that moment, but wishing I find is nothing more than a waste of time, it gains us nothing. How it played out was as far from those words ” I will get it all – you will be fine” as you can get. His words – “I know what I am doing” is not as one believes, he is not lying, none of the doctors are lying – that’s the great part of those words, they tell you with a straight honest face and know full well how you will interpret them but the truth is – they know they are going to kill you – they know what they are about to do will never ever cure you; it’s a falsehood and they know exactly what they are doing.

After visiting the doctor and expecting to come out with a script for doxy in her hand she came out with an appointment for a scan in hand. Shortly after the results came back she was headed off to yet another appointment and there a doctor told her she had an unusual lump under her breast. A biopsy resulted and it came back with invasive ductal carcinoma ER positive, PR Negative HER2 positive, it was poorly differentiated with intra ductal carcinoma solid – node # 1 positive with tumor clusters, #2 and #3 were negative. Surgery resulted in a radical mastectomy of the right breast.

Before surgery she was put on a neoadjuvant therapy of Herceptin 6 mg. Taxotere 75 mg and carboplatin @ACU of 6, no radiation was indicated by three top radiologists. She received 6 cycles of Taxotere and carboplatin and the Herceptin was planned for one year. In 2009 of June the Herceptin was stopped and Tamoxifen was started. By November of 2008 the radical mastectomy was performed.

She was complaining for the same shoulder pain during the course of the year and was reassured they got everything and the pain in the shoulder was not the same but replaced due to the surgery and reconstruction of the breast that she was undergoing. But she still complained and in November of 2009 a scan was done that showed she had hypermetabolic masses on the chest wall and collar bone.

Surgery was again performed in January of 2010 The reconstructed breast was removed; the tumor on the chest wall was removed as well as on the collar bone. The tumors 4.5 respectively in size. Jesicha’s tamoxifen was stopped and cycles of Zoladex and Armidex was begun. Radiation was recommended and begun on the chest wall. By June of 2010 despite the heavy cycles of chemo a new scan showed boney mets on the spine of L2, L4, T5 and ilicc bone.; another scan in October showed new hypermetabolic foic on the skeleton at T5, L3, L5, L4, L1.

She decided to leave her care at Beth Israel and Sloan, to go to a new promising doctor at Dana Farber; she was hoping for one more trial that might make the difference.

In November of 2010 the reports came back for the second surgery; it was TNBC and identified as adenocarcinoma metastatic; lymph nodes #3 and #4 were no longer negative, they were positive for metastatic carcinoma. We would not know this information until 2012.

December of 2010 her reports were gathered from NYC and sent to Dana Farber. She waited for acceptance into a trail program and was told if she were to begin new cycles of chemo her chance of getting into a trial would diminish. She waited. The doctor told her cases such as Jesicha’s could go on for a long time, and she would simply manage her condition, much like a chronic illness of any type. Things she thought might not be so grim afterall.

January of 2011 she was put back on Herceptin, and several more cycles of chemo using Avastin and Xeloda. By March there was no improvement and the trial she hoped for was not available because the trial she had used previously of the carboplastin cocktail and the subsequent mets deemed her unqualified. She was devastated.

She was being treated by the doctor from Dana Farber as well as a former doctor from Sloan that happened to move closer to Yale; she administered all the chemo so traveling to Boston was not needed. In May she complained of a bump on her head just to the back of her head. It grew, but the doctor claimed due to her headaches from the chemo she must have gotten dizzy and hit her head. A week later we returned for another round of chemo and told the doctor it grew and another appeared. They began to appear daily it seemed and they all grew quickly. She had one just over her eye and another to the right of the eye; her vision was deteriorating. They decided to add Tykerb to the mix.

In June, with no improvement and the tumors now in her jaw invading her mouth, radiation was scheduled. Radiation would begin in mid June.

The treatment, the events were like a whirlwind around me; I the mother just watched and so many others around her overwhelmed her with their opinions, commands, and advice, they completely trumped me. My opinions were always go natural do something but not chemo, not radiation – and surgery seems so final so over the top; but I was looked at as strange, uneducated in these matters. We must not forget –” I know what I am doing” and those words in everyone’s mind meant – I know how to cure you —– when the truth was — I know that I am doing all the wrong things and I know you will die. But no one listened, and Jesicha followed the advice of those she believed had her best interests in mind.

But she was not doing well, in fact, she was right on target for the ” I know I will give you enough poison and I know you will die”

So it was on a June afternoon that I confronted with Jesicha the ‘good’ doctor. She looked straight at Jesicha and told her – nothing is working – you did not respond – there is no hope. Jesicha reeled and began to quote the ‘good’ doctor, how she told her the cancer would never progress, it would be controlled like a chronic illness, not worry she will live to 80 —- The doctor taken aback stood stiff and threw back these words: ” I have given you three years – quit your whining” Had I not been shocked and had control of myself I would have done the most likely thing – hit her. But I did not, in my mind I still want to.

Meanwhile at a support group center she overheard another woman with similar advancement had gone to Germany for Whole Body Hyperthermia and was not doing well. Jesicha enlisted her mother to do begin research. A c all to a clinic in Germany resulted in his telling her the probability of her making the trip in her condition was not good but there were clinics in Mexico that he suggested that could help. She received a consultation with one clinic to determine if she qualified and found she was able to do so. She had also tried Dr. Bryzinski in Texas but the FDA had rulings as to who could get into his program and Jesicha had not undergone enough surgery and radiation to qualify. She was declined. The clinic in Mexico accepted her and arrangements were made to go just after her last radiation on her jaw to improve her eating ability. Jesicha had two treatments and the radiation on her head proved to taxing to her already frail body. Emergency arrangements made to bring her to the clinic immediately, a week or so short of her appointed time.

After three weeks, Jesicha who was carried into the clinic walked out; her cancer was dying; there as a huge reduction in the blood supply to the tumors and some had disappeared. On her skull alone, she entered with near 13 visible tumors on her skull, jaw and face structure; she left with 3 and they were shrinking. She returned home expecting new and great things ahead. While at the clinic with her mother she was so excited about her progress but very disappointed that such good treatments were blocked from patients, never disclosed to people that have no hope; that rather than give people what they deserved, all information and resources it was being held from them. [ Note: by federal and state laws a doctor cannot administer, recommend or disclose to a patient any treatment that is not approved by the FDA, no matter if the doctor believes it could work or could be a last hope ] Jesicha did not know that such laws existed and if she had known she would have deemed that barbaric, that all persons have right to know of all treatments and make such decisions for themselves. Jesicha’s Hope was conceived while at the clinic, to give to others what she thought they should all know and have the right to know.

Jesicha was doing fine until mid August of 2011; her scans in early June compared to her July scans showed the cancer was dying off rapidly. Despite these good scans, her condition began to show signs of being sluggish and it was noticed the Lyme’s disease of 2010 was resurfacing again with pains to her knee joints. Her oncologist here would not believe it was Lyme’s’ and would not give her Doxy, but insisted it was bone mets, though no PET scan showed mets to the knees. Again she called the clinic who sent a colleague associated with the clinic to see her in CT. He arrived shortly after Jesicha arrived home from the hospital where she had been admitted for drug interactions from two nausea medications to combat the nausea from the doxycycline.

Her condition began to improve. The visiting doctor acquired all records from her local oncologist and hospital. He was disturbed to find they had known for some time her liver was badly damaged, yet no one had told her. It was later said to me that they did not want to bother her as they deemed her terminal any way. This was also true for the heart damage that was found from radiation to the breast; although she had made numerous complaints and underwent tests, the fact of the heart damage was not disclosed as it would have made no difference. So it was that she began to get sluggish and felt weaker, after the heart palpations her heard was failing. Her liver began to ‘relax’ and was noticeable on August 19th. She fell into a sleep after her mourning treatments. Against Jesicha’s wishes and mine as I upheld her decisions always, her siblings called in hospice. The hospice nurse administered morphine, and told us to give it to her every four hours, in spite of the fact Jesicha was in no pain. Little did I know.

Jesicha would awake and fall back to sleep, she often talked about the past and then fall back to sleep. The family gather on the evening of August 19th for a family dinner, common with us; Jesicha awake even directed where things were in the kitchen but soon slipped back to sleep. She asked that I hold her hand and not leave her. She told me as everyone was eating that she did not want to go there alone and needed me to be with her.

On the early morning of March 13th 1975 Jesicha Erin was delivered to me from beyond the veil – and on August 20th 2011 Jesicha Erin was delivered back to beyond the veil. Her mother, her sister Natasha and brother Ethan were by her side. At 2:50 am Jesicha let go of my hand forever.

 

Jesicha started Jesicha’s Hope to help others so they did not go through the torment and barbaric treatments as she did, that there would be a place for people to go and not get the sugar coated advice given by other places. She knew the only thing that can save you is to know the truth. If ever one thinks we at Jesicha’s Hope does not care, does not know how you feel; that is the farthest thing from the truth. I have walked in your shoes.

 

 

To get help and to talk to someone that cares only about your wellbeing contact Jesicha’s Hope. www.jesichashope.org Learn more about Jesicha and more about how you don’t have to under go barbaric treatments. Cancer does not have to be terminal. Contact us: info@jesichashope.org or find us on facebook —- www.facebook.com/jesichashope Join us in our group —- www.facebook.com/groups/alternativecancertreatments

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