I have been (lovingly) scolded for not updating my blog! I know it has been a while but I guess I was waiting for some “news” and was waiting to have something worthwhile sharing! I still don’t have much but here’s a little update anyway!
I think all the pain I have been having these past few weeks (well truly months) has started to slow me down… I finally broke down and got the MRI of my lower back that all my doctors were recommending. The MRI itself was super painful as lying flat on my back is one of my worst positions and given my luck these days, the tech’s computer “froze” while I was in the machine and she had to stop the scan, wait 15 minutes and restart it! The results showed how really beat up my SI joint is with one herniated disc on one side with significant disc shrinkage and I have another disc bulging on the other side. One of my doctor’s couldn’t believe that I had not been in some sort of accident or didn’t have any traumatic injury to the area (our hypothesis at this point is that it was a weak spot to begin with and chemo has been making it worse). If I wasn’t on chemotherapy, surgery would probably be the answer but I am not currently a good “surgical candidate”. I have had one steroid injection that seemed to help for a couple of weeks but the pain is creeping back up. I tried 2 different narcotics but ended up being so nauseated on them that although it did help with pain, the way I felt was so awful that I stopped taking them. I use ice, heat, a tense machine, an infrared red light machine, essential oils, I tried red wine, mojitos, acupuncture and physical therapy, I am seeing another chiro who uses different techniques – I am not sure what else there is to try at this point. I need to talk to my doctor about other steroid injections. I seem to get a little better on my off chemo weeks but after chemo, things flare up again. I now have a whole new perspective, view, and understanding of people living with pain. I keep saying that the pain has been worse than chemo and that’s saying a lot! In any case, all this to say that it is frustrating and even depressing to not be able to be as active I have been and am still looking for the answer that will make the pain at least bearable and enable be to be more physically active.
Tomorrow I go in for chemo 5 of 6 -yay 2 more and that’s it (for this one)! I can’t wait to be off this cocktail. The cumulative effects are starting to be harder to handle. Mainly the neuropathy in my hands and feet which comes with the cold sensitivity. This makes cooking more difficult as handling anything cold hurts my fingers. I am a bit anxious to hear what will be next. I will obviously get rescanned and from there the next course of action will be decided. I have already booked my PET scan at Shands and have a follow-up appointment with my amazing GI oncologist the next day – this is my sneaky way of making sure I won’t have to wait too long to get the results and I always prefer to get the results from him, he is so smart and so compassionate at the same time, so far he has always been able to give me HOPE… So the next steps will depend on the results of the PET scan. The good news is that my CEA (cancer marker) has been going down and it has always been a reliable marker for me. I torture myself with the different future scenarios and keep having to refocus my thoughts on the “now” and continue practicing to live in the moment without being worried about the future. I know this is challenging for everyone but let me tell you that when you live with stage 4 cancer, it makes it even harder… Regardless, I am hoping that my next treatment will be the new chemo pill that was just FDA approved. Anyways more on that in a month or so!
I still don’t know if I am officially in the fruit flies study. Initially, the study was going to use a “fresh tumor sample” to run their genomic testing. The timing was perfect for me as I had active tumors in my liver that could have easily been biopsied. However, the study’s IRB (ethic’s committee) did not approve the use of fresh samples so they are using “archived” samples, meaning samples from previous surgeries/interventions. I have some tissue left from the tumor they removed in my colon so this could do. However, I was trying to see if I could still use a “fresh” sample. My concern comes from the fact that when cancer stops responding to treatment, new mutations can emerge and help the cancer spread. So in my mind it would have been best to use a fresh sample. The problem became to find a way to get my insurance company to pay for the biopsy and all my doctors told me they could not find a good excuse to put me through another biopsy and they were all convinced that my insurance company would not cover the costs as there was no medical “necessity” to do this. So I caved in and decided to use archived tissue. New-York has had my sample for 3 weeks now and I still have not heard from them as to whether or not they have what they need to run all their tests. I do send a weekly email to try to get an update. When I asked them when I should expect to hear, I was told “hopefully soon”. That was almost 2 weeks ago and they did not answer my email this week…. I will try again this week 🙂 My motto here is: squeaky wheel gets the oil!
So my goal is to surf through the next month until we have another course of action. I am pretty excited to attend a colon cancer conference in Arizona next weekend and will be back on time to do Halloween with my beautiful family and friends. So that’s it! that’s what’s happening here!