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Exploring the Beauty of Ohio and Beyond...

190914-5493

190914-5493

Sandusky Bay Bridge, Sandusky Ohio

About the photo: Bridges are often used as a symbol of connection. Covid-19 and the recent events and protests have shown us we need to rebuild connections within our families and communities and sometimes even with ourselves. Sandusky Bay Bridge from the public access fishing piers. You can find more about this photo and the trip where I took it in this blog.



I’m sure I elicited a few groans with that title, but YES!!!!, the tumors have shrunk significantly. I think the most amazing thing about this is that it is a treatment plan that is not FDA approved for my type of cancer. When we found out the last treatment plan wasn’t working, Dr. Backes was really between the proverbial hard place and a rock.


I had the emergency hernia surgery on March 2. Was released on the 9th. We knew from the CT Scan that found the hernia (with the bowel pushing through) that the tumors had grown while on the last treatment. I had to go off chemo to heal up so at least she had some time to look for a new path. At that point, I had exhausted all traditional treatments (and one clinical trial). The clinical trials she was hoping for shut down because of Covid-19. Then she found this, a combination of an oral daily chemo, Lenvimo, and the immunotherapy drug, Keytruda. A few studies showed it was particularly good at beating clear cell ovarian cancer and especially the aggressive kind. The catch, not FDA approved for this type of cancer yet and insurance would not pay for it. After a couple of appeals to insurance, they had me petition the two drug companies and within 2 weeks we had both meds free of charge. If this works for me, I may play a very small part in eventually getting it FDA approved.


The last 9 weeks have not been without problems though. For some reason, I had a really hard time recovering from the hernia surgery, even though I felt pretty good when I got home from the hospital. I could not sit up. I spent most of my time just distracting myself (TV, Facebook, etc.). I couldn’t concentrate. I also ate very little. Jim was getting very worried about that. Rightly so, because in 3 weeks I lost 20 pounds. I wish I could say I am maintaining, but it looks like I lost about another 10 pounds. I was just starting to feel a little better by Easter when we started the new treatment plan. It knocked me for a loop. I was dealing with physical pain that I could not tolerate. Surprisingly, their first choice was to try opioids which did no good and caused other problems. It took till the end of the second round to figure out something that worked well.  By the beginning of May, I started feeling better on a consistent basis and was able to return to work (working from home). I still can’t always count on feeling good (or at least decent) which complicates making plans and, of course, I tire pretty easily. But if this is working, I can live with it.


I will also admit Covid-19 did not help. It’s taken me a while to come to terms with how much risk I’m willing to take to maintain quality of life as we re-open. The first time I went out, I was practically a germaphobe and knew I didn’t want to live that way. I also figured out that even though I’ve always considered myself an introvert, I need some social interaction. I know at one point, I told Jim, I used to be able to dress up and put on makeup and go to events and forget that I had cancer. They pulled me out of myself.


Today was not without a little bit of bad news. For those of you read the Facebook post (or the blog post) where I talked about being very scared and very down yesterday, I also mentioned an unpleasant side effect has set in. She confirmed what I feared it was, but also that it was probably due to the tumor shrinking. It was not totally unexpected. I could have surgery to fix it, but right now that surgery would be life-altering. If we can get the tumors to shrink more or even completely, I have a better chance of maintaining a normal life. The side-effect can be lived with and I know more now how to handle it.


The other piece of bad news was that two new small spots were spotted on the scan on my liver (I previously did not have anything on the liver). She says this can happen and again not totally unexpected and did not diminish her feelings about the success of shrinking the other tumors. She said that even if these are cancer, they may respond to the treatment, and if they don’t we can do very targeted radiation (2 or 3 visits only, nothing like I had last fall).


I know I have a long road ahead of me but there is a chink of light now. I celebrate this WIN today! Exhausted both emotionally and physically I came home today from the appointment and infusion and took a really long nap. I was absolutely overwhelmed with the outpouring of support from the Facebook post. Just the act of writing it helped me a lot. I almost didn’t post it because it felt selfish with everything else going on in the world, but I needed help. I needed to regain the inner strength I knew was there but was having a hard time finding yesterday. It’s a hard thing to admit that I’m scared. I’ve mostly stayed positive in these blogs, but realistically there is no way anyone going through something like this can stay positive all the time and not need help.


Three songs have really helped me over the last several weeks:


Remind Me You Are Here – I love the refrain that says “I won’t ask you for reasons, ‘cause a reason can’t wipe away tears.”


Lord From Sorrows Deep I Call – my sister sent me this when the last treatment didn’t work and words of encouragement just couldn’t be found. I sent this one to my pastor who has been doing sermons and Bible studies on the lament Psalms and the practice of lamenting. He’s even written some laments for the current problems that our world is facing.


Original – This song started as the credits rolled for Dolittle which I rented from Amazon several weeks ago. Without giving too much of the movie away, you may think it’s simply about someone who talks to animals, when in fact, it’s about rebuilding your life after a tragedy rather than shutting down and finding your calling/passion in life. The words of the song resonated with me. In some ways, the movie and song pushed me out of a place of complacency I had started to sink into it.



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