Jennifer Goodman Linn You Fearless

Aligning Towards a Plan

  This past week had to be one of the longest of my life (and I assume Dave would agree).  Since I last wrote, we have spent about 90% of our waking hours meeting with, consulting or emailing with doctors and labs across the country (and world) to try to formulate a plan that we can be comfortable with.  There have been lots of hiccups and bumps along the way (like for the few hours we thought I had Hepatitis not realizing that when you test “positive” it just means you have had the vaccine before).  Good times! As many of you know, not having a plan in place can be very stressful so although our plan is a bit “out of the box” because we’ve already tried so many of the more typical drugs, I was thrilled that we committed to it this past Thursday and started. Partly because I am tired of talking about it and partly because I truly don’t understand all of the medical details, I will keep this very top line.   We are basically trying a combination of 4 different drugs to attack my tumor very aggressively.  Because my tumor is “highly complex” at this point and has various different genetic mutations, it’s unlikely that one form of therapy will work.  So we are throwing multiple agents at it hoping it retreats quickly. This past Thursday I started on two traditional chemotherapy drugs that had been used in combination on me in 2007 and 2009 and we saw a positive response.  In addition to those two drugs,  we are adding two newer, more targeted chemotherapy drugs (1 is a shot and 1 is a pill) that are supposed to go directly to the tumor source and work more “personally” on the tumors.  The reason for trying  these drugs is that, although rare with sarcoma, my tumors tested positive for certain receptors in my body.  So, I started the two chemo drugs and the shot this past Thursday and will begin the daily oral chemo next week.  This chemo regimen is two weeks on and 1 week off although the pills are daily and the shot becomes once a month but for the next two weeks it’s 3 times a day (ouch!) On Tuesday I will have a biopsy to remove tumor cells so that we can hopefully implant them in mice and try experimental drug combinations on the mice to extrapolate if they might work on me.  This process takes 3-9 months, and we have no idea if the mice will “take” to my tumors or how they will respond, but it provides us some hope for a plan “B” so we are anxious to get started. A story keeps on coming into my head this week about a dear friend of mine who had a very difficult time getting pregnant years ago.  She and her husband tried IVF treatments.  Anyone who is familiar with this procedure knows that there is a 2-3 week period after the embryos are implanted into a woman’s body that she doesn’t know yet if she is pregnant or not.  The doctors perform tests a few weeks later and then let you know if the embryos “took” and created a fetus.  I remember my friend telling me that she realized she had a CHOICE in how she approached those tough few weeks: she could either assume she wasn’t pregnant or make the best of the situation and live her life as if she absolutely, positively was pregnant for those few weeks.  I loved that she chose to be pregnant.  I have decided to do the same thing.  Until a Doctor tells me that this chemo is not working, I am assuming that every pain, cramp etc. is a sign that these tumors are in way over their heads. Dave and I are so grateful for the outpouring of love and support that we have received from everyone.  There are no words to explain how comforting it is to know that while we struggle with difficult decisions and difficult tests and treatment options, so many of you are struggling right there with us. I am slowly but surely starting to come a bit out of my cave.  For the first week I really didn’t want to speak to anyone because I was so raw and sensitive.  Now, I find that I am enjoying emails much more and a mention of a phone call or visit doesn’t make me run the other way.  Hopefully I will feel a bit better soon, and we can make those things happen. In an effort to help you all continue to be as wonderful as you have been, I wanted to share some things with you as clarification and/or advice.
  • I am following a fairly strict diet right nowMajor digestive challenges from 6+ abdominal surgeries coupled with the anti-cancer/inflammation diet that I am roughly trying to follow have made me pretty strict about what I put in my mouth.  Basically I avoid raw vegetables (I can only digest veggies that are cooked or roasted) and I don’t eat meat (red or white) or dairy products.  I am also trying the best I can to replace white products (sugar, bread, pasta) with higher-grain products (quinoa, wheat bread, whole grain pasta etc) when my stomach can digest them.  So, thank you for your kind offers to bring me ice cream, brownies etc but the reality is that I am rarely eating anything like this.
  • I really don’t want to talk about it. I lay everything on the line on my blog.  I do this so that when I see you or get a phone call or email you DON’T have to ask me how I am doing or ask questions about my situation. Dave and I have no choice but to talk about it with so many doctors every day.  The real gift you can give me is to help me take my mind off of this.  If I want to talk about it with you, I will.  But for now, if you ask me questions, I will likely ignore you or respond, “read the blog!”  To be clear, this doesn't mean that you should go the other way and be so carefree in your voicemails that we truly don't think you know what's going on.  There's a way to be compassionate and supportive of our desires to not focus on the topic simultaneously.  Thanks for understanding.
  • My cancer never left, it has stopped responding to the last treatment.  A fair number of people have been emailing us saying that they are so sorry that we don’t have a longer “respite” between treatments or that they are sorry the cancer has returned.  Just to be factual, I have not been free of disease since early 2010.  I have been actively on treatment.  When things were really dire in the fall, we were grateful to finally find a treatment option that seemed to start working incredibly well.  So, I started to look better and feel better because the tumors started to shrink.  BUT I was not free of disease and they were still fairly large.  Now that they are growing again, we have to attack them quickly and aggressively so I don’t go back to that tough time.
On a last note, thanks to my Duke friends for always keeping it real.  While most blog readers enjoyed my retelling of the famed US vs. Russia Olympic game, many challenged me with taunts like, “And you call yourself a Blue Devil?!?”  Yes, I am sorry to not mention that on par with the Olympic miracle was Duke’s win in the 1992 East Regional Finals of the NCAA that put Duke in the Final 4.  With 2.1 seconds remaining in overtime, Duke trailed 103-102.  Grant Hill threw a pass the length of the court to Christian Laettner, who dribbled once, turned, and hit a jumper as time expired for the 104-103 win. My favorite part of this video is to see Thomas Hill’s reaction after the shot.  He is so overcome with emotion;  he doesn’t even know who to turn to.  I feel like saying "Watch out tumors, here comes Jen!" I will plan on updating more often assuming I start to feel better and so appreciate your love and concern.  They say it takes a village to cure this disease …we are lucky that we have an army!