Dodging “THE” bullet

I have been trying to come up with the words to explain the past few weeks and the words won’t flow like they usually do… Six weeks ago, I saw Dr. D. who drained the fluid in my belly, a total of 1.7L was drained. As my friend said “that’s the size of vodka bottles I usually get!” lol!. The procedure went well and the ascites seem to have been under control with the diuretics so I am hoping to not have to get another “paracentesis” (the procedure to get it drained).

Things really went downhill from there.  My fatigue and exhaustion just kept getting worse and worse. For a few weeks, I was spending most of my days in bed, dealing with all sorts of abdominal discomfort and lots of nausea and vomiting. I then started to feel like my body was shutting down, as if it was crumbling inward. The littlest things required so much energy and made me even more exhausted. I would get up in the morning, take a shower and then take a nap to regain enough strength to make it to the kitchen and have something to eat. My appetite was very poor but I would try to force my self to eat a little, always hoping that it would stay down. My husband was truly incredible during these few weeks. He took over the cooking, cleaning, laundry, and kids stuff and never once complained. I was feeling miserable all the time and hated not to feel well enough to help him with anything. If I had been honest when people asked me how I was doing, the real answer would have been “I feel like I am dying”. I have never felt so close to death and for the first time in 3 years, I did not feel the optimism and hope that I usually feel. Some people in my online support groups talk about the things they do for when they will no longer be here. Some will get birthday cards for the next 10 to 20 years and write their kids birthday cards in advance, some will make videos of them so that their kids will remember their voice, others will make sure they have a special/meaningful gift for their children to remember them by, others will make photo albums. I have never had the urge or desire to do such a thing, but during those few weeks, I was thinking about it. Sadly, I didn’t even have the energy to do anything. Then one month into my new chemo, I had some labs done and of course I was hoping that my cancer marker would stabilize after being on the rise for a few months. Well, in one month, it skyrocketed and ended up being at the highest it has ever been, even higher than what it was when I first was diagnosed… devastated doesn’t even begin to describe how I felt. As I was laying in bed one evening, I could hear my husband and the kids having dinner and laughing together. I felt jealous that I couldn’t share this moment with them and for the first time, it crossed my mind that they would be ok, that whatever happened to me, they would be fine… this thought reassured me as much as it scared me. In one of my weakest moment, I had a difficult conversation with my husband and told him I was “done”, 3 years is a very long time. He made me promise to go as far as I could go on this chemo and try one more trial. I agreed…  Fred came to my next Dr.’s appointment. I wasn’t sure if the doctor would stop the chemo given the rise in my marker. This is pretty much the end of the line for me, I have exhausted all the chemo options. I felt so weak that the thought of trying to get into another trial was overwhelming. My doctor wanted me to continue on the chemo until my next scan which was scheduled last week. We would then figure out the best option from there. I have written about a combo of drugs which is very promising for colon cancer that is said to be MSS (what I have). However, the Phase III trial sucks and you only have a 50% chance of getting “the combo”. There is no site (as of now) in Florida and there was no way I was willing to start traveling for a 50% chance of getting the combo. I asked my doctor if he was willing to prescribe the medications “off label”. Both of these drugs are FDA approved for other cancers but not for colon cancer. My doctor can prescribe them but the question is whether my insurance will cover them. Some people in my online groups have been successful at getting their insurance to cover the drugs, so I thought it was worth a try. Getting the combo without having to travel would make it so much easier on me! I guess we could still petition the drug companies to give me the drugs on a “compassionate care” basis but given that they are hoping to have a major breakthrough with these drugs, the chances of them agreeing are probably close to zero! Paying for them out-of-pocket would probably run around 30K per month… My doctor agreed to start the process and see if my insurance would cover them. I then mentioned to my doctor another trial with “the” combo in addition to another drug I have been on before. It is a Phase 1 trial in which I would be assured the combo. My doctor seemed to think it would be a good idea. After we reviewed these options, my doctor told me he was willing to talk about the “other” option when I was ready… I knew what he meant… he meant hospice. I was actually going to work for a little after my appointment and so I told him I was not ready… this is how bad things were…

What happened from there is difficult to explain… I have described a little bit before how I was leaving no stone unturned and have been doing “energy” work. I had a session with the 3 most powerful human beings I know and the very next day, I started feeling a difference. Ever since, things have started super s-l-o-w-l-y to improve. It is very subtile with some better days than others but the change was drastic, I right away stopped feeling like I was dying. I feel like I just avoided the death bullet. Is it the chemo that somehow someway started to kick in or is it the energy work? – who knows but what matters is really that I am starting to feel better. Last week I went to Gainesville to see my GI oncologist. I had not seen him since January although we had been in constant contact. I had a scan on Wednesday and then met with him the following day. To make a long story short, I am being interviewed by a reporter about clinical trials and I invited him to attend the appointment with my doctor (with my doctor’s approval of course!). I have never left Dr. G’s office feeling down, he always seem to find hope and options when there aren’t any and so I was very eager to see him! The first thing he told me was that my scan was “stable”! This was such a huge relief after the increase in my marker and after a few months of continuous growth. That was a great way to start the meeting. We then delved into the options moving forward and the one that makes most sense is the Phase I trial of  “the combo” mentioned earlier. The trial only has 2 sites and they are looking for (only) 30 patients or so. The study is not yet recruiting yet but both sites have wait lists to get in! I contacted them both and the one in Denver seemed friendlier and people were better at getting back with me. I have managed to get myself on the wait list without having to fly out there for an in-person consult and I am now waiting to hear from them about a potential start date for the trial. I will then need to fly out to be screened.

So this is what has been happening and why I have been so quiet. I probably still have messages to return and apologize for not always getting back to you guys but I am sure that after reading these few lines you will all understand!

Forward, onward, and upward I go. One day at a time, one hour at a time, sometimes one minute at a time…


29 thoughts on “Dodging “THE” bullet

  1. I can’t even imagine… Michael Jackson’s song “Beat It” comes to mind. I wish you happiness, a cure, a miracle, all the best ❤

  2. Rachel, sending love to you and your family. I’m trying to find the right words to say how happy I am that energy and hope is returning to you, how much your love for your family and life shine through – continuing to put one foot in front of the other to get new options. Thinking of you and sending all my best for more positive good news.

  3. I am so glad that you are finding energy again and that you have such tremendous love and support in your family and friends. How I wish you were not in this place to begin with Rachel. Love and prayers to you and your family.

  4. Rachel, your optimism and spirit are truly inspiring! My sister is battling the same disease, 2 years in and somewhat stable. We live far apart and it troubles me that I can’t do more to help her. Not sure when you will get to Denver for the trial (🙏🏻) –we live in Boulder, and if you ever need any additional help (or someone to paddleboard with!), please reach out. I know this sounds weird for a stranger to contact you, but I realize how hard it must be to leave your home and family to tackle this. Honestly…my best hopes wishes prayers to you.

  5. Rachel: I saw the article that was written about you and searched you out on the internet. My thoughts and prayers are with you. If anyone can beat this, it’s you. Hugs

  6. Just read the article on CRI and had to reach out. I am a 39yo stage IV kidney cancer patient, mom to three littles, and also a psychologist. My treatment team is at MGH. I will be following your progress. Fight on!

    • I found Rachel’s blog from the article and I contacted the journalist thanking him for writing it. I told him it was like looking in the mirror reading her story. Then I saw your comment I am also a MRCC Stage IV that was given 24 months almost 9 years ago. Like Rachel I don’t “look” sick generally very active and have been in 3 trials now am on my 5th drug and disease is progressing nonetheless. So I am again researching the silos of renal cell and trials as I don’t feel my immunotherapy drug is working. If you are interested would love to exchange notes. 😊

  7. rachel, please know that if you do go to denver for evaluations and/or treatment, i can provide transportation, accommodations, or any other help you need. please contact me if you need the help. kind regards, sharon ogez

    • Thank you Sharon! Sorry for the late response! We had to evacuate from the hurricane and it took me a little while to get back on my feet! I will keep your offer in mind! That’s very sweet of you!

  8. Rachel, your account is moving and inspirational. You are amazing. I believe your energy healing is powerful and that you should pursue it. Have you read “Radical Remissions” by Kelly Turner? A real eye-opener. Much love from this oral cancer patient.

  9. Rachel,
    I am an ovarian cancer survivor here in Denver. I’d love to help you in any way including providing you a place to stay until you find something closer to the University of Colorado. I’d also love to offer you emotional support. I too am a young mother…and our children are the same age. I’d love to talk to you.
    Mary Beth Graff

    • Thank you Mary Beth! Sorry for the late response! We had to evacuate from the hurricane and it took me a little while to get back on my feet! I will keep your offer in mind – I have never been to Colorado! Thanks for your offer!

  10. Rachel, glad you are feeling better and you and the family are okay after the hurricane. I’m sending all my positive energy, love and prayers for all of you each and everyday. Xoxo

  11. I saw the article that was written about you on the internet. Recently my best friend has been diagnosed with Stage IV colon cancer. She is 47. Her name oddly enough is also Lefebvre and so that drew me toward reading your blog. You are helping me to understand more of all that goes on not only medically but emotionally. I wish for you the very best.

  12. Bonjour Rachel, je voulais t’écrire pour te dire que tu es toujours dans mes pensées depuis le début. Je prend de tes nouvelles à travers mes parents. Je t’envoie des caresses de courage et je t aime fort. Ta cousine Hélène d’Ottawa

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