Andrea’s California Oddessy

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Hi from sunny California!!!! My phone has been ringing off the hook. So I thought I should fill you in on the weeks events.

I had a great flight. Except I had the window seat and I had to pee really bad…and the people next to me were sleeping and I was too polite to wake them. So I held it in for 2 hours. And I was randomly chosen twice to have my luggage checked before leaving Philadelphia.Which made me the last one on the plane.

I went from the airport to Kelly’s grandmas’ house…to Glendale ( all on Tuesday 15 hours of traveling). Wednesday from Glendale to Santa Monica to Redondo Beach to Glendale. Thursday we traveled back to Milbrae and stayed with Kelly’s grandma. Friday we traveled to San Francisco and saw Chinatown,the lower Haight,the Mission,Fisherman’s wharf,the Japanese tea garden,theDeYoung museum, the Golden Gate bridge, Palace of Fine Arts, Ghiardelli Square,and the marina. Then we drove to Karen’s ( Kelly’s mom) house in Santa Monica. Whew!!! Not bad for a chemo chick.

I know you want to hear what happened at the Santa Monica appointment. My brain is fried.   So here Kelly’s mom, Karen will fill you in, so I can put up my swollen feet and lay my tired body down for a well-needed rest.

Karen’s take on the Santa Monica experience:  We arrived early in Santa Monica to locate the clinic and fill out forms.  The office of Drs. Chawla and Chondra were very professional and welcoming.  The intake clerk was impressed that Andrea had brought copies of all her health records, and that he didn’t have to make copies of anything.  We were seen within 15 min. of our appointment time.  Dr. Chondra did an examination and listened to Andrea’s recitation of her disease and treatment so far.  As I listened to her speak, sitting cross-legged on the examining table with her white linen pants and black turban, her intelligence and earnest desire to be a full partner in her treatment impressed me deeply.  Dr. Chondra seemed very concerned about choosing the best course for her.  After listening to her history, he asked her whether the course of treatment she had been receiving up to now had been at all effective.  She answered,”Yes.” He replied, “If you were my sister, I would tell you to stay with what is working.  Rexin-G is in such early stages that if it were a baby in utero, we wouldn’t even be able to determine the sex of it yet.”  It is too soon to tell if it will work.  And furthermore, the government regulation of this trial will only allow those whose cancer has failed to respond to treatment to enter the trial.  He said that in all other respects she did meet the criteria for the trial, and they would keep her file in the event she reaches a point where her treatment is failing, and admit her at that time.  The interview ended with Andrea saying, “In case we don’t meet again, I’ll see you in the next life.”  Dr. Chondra responded, “In the next life I will say hello to you.”  They were smiling as they said good-bye.  I was crying.  The feeling we both had was positive about the interview and the professionalism of the doctors, as well as their concern for her.  We felt that Rexin-G would be a good back-up plan should she need it down the road.  And Andrea definitely had a positive response to Santa Monica as a place to live while getting treatment.  The trip was definitely worth while in those terms.  On a personal level, I was very delighted to have the opportunity to spend time with Andrea.

4 Responses to “Andrea’s California Oddessy”

  1. Heather says:

    That trip sounds like it was wonderful and exhausting. I hope you did have a great time.
    I’m sorry to hear that you didn’t get into the study, but what Dr Chondra said, makes complete sense. If your present treatment is working, keep going with it.
    Thoughts are still with you, Andrea. You have got to be the strongest person I know.

  2. leah says:

    even tho you are not going to be in the study the reasons are great, that means the treatments are working and you are resopnding to them which is awesome!
    it is also great to know that you will have a place in the study if they don’t.
    i’m so glad that you had a nice time with Kelly’s family sight seeing, it sounds like you had fun.
    have a safe trip back.

  3. Tim says:

    Andrea:

    We traveled to the clinic in Santa Monica the previous week and the results of Jeanette’s visit was the same. She would have to fail chemo before she could be admitted to the trial. Chemo failure however was not listed as one of the 11 specified inclusion criteria for the clinical trial. Chemo failure was however listed as an inclusion criteria in the Mayo clinical trial but not in the Santa Monica trial.

    Dr. Chawla was emphatic that he could not violate the FDA rules and criteria applicable to the trial. The chemo failure rule is a mystery to us.

    Your positive attitude in the face of adversity inspires us. We were crushed by the fact that Jeanette would not be admitted to the trial for a reason that was not in the clinical trial citeria and that we had traveled to the clinic in expectation the the listed criteria were satisfied. We changed our flight plan and flew home the next day.

    Subsequently, Jeanette’s CA 19-9 more than doubled since beginning her chemo. This indicates failure but the onc said that numbers go up and may go down. We will see what the next CA 19-9 reveals.

  4. dina says:

    Ok, it makes sense. Because I also have a disease that has no certain cure, I can totally relate to the feeling of being so close to something that might be an answer. You are going to have to find your own comfort level balancing hope with risks. Of course if something will make you well you want it ASAP. Time is no friend when you feel like shit and have a family to care for. On Labor Day we took our son to Rittenhouse Square to enjoy my last day of freedom before returning to work. It was a gorgeous day and we had just taken PATCO with him for the first time so he could enjoy the train. We were wandering around looking for a place to grab lunch when a crazy amount of emergency vehicles pulled up ti an alley we were about to walk by. I sent my husband ahead to check things out, as I did not want my son (or me, for that matter) to see an accident. People were gathering around the alley by the dozens. Turned out that a man had driven through the wall of the parking garage and his car landed on its roof in that alley. When my husband returned to us to tell me what he saw and that we should walk in the other direction, I began to cry and literally gag. You’re out there looking for this peaceful perfect last day of summer and someone is dying a few feet away from you. I later found out that the man was a teacher (like me) and had just come from a Labor day parade that he was a part of every year. He hadn’t had a heart attack or stroke, but died from being crushed in that car. I couldn’t get that out of my head.
    I brought that up because you just never know. You, I, anyone, could live 20 plus years waiting to die after being diagnosed with breast cancer…or we could be in perfect health, happy as ever and get hit by a friggin bus tomorrow.
    Be well. When I pray for you I wish for days filled with lots of energy and happiness. No nausea. No backtalk from the kids. Days where you can forget that you have been sick. Have a safe trip back to Philly!