So here we are, Monday, September 10 marks ten months since that dreadful day I first heard the word, “cancer” in regards to my health. I remember hearing that “I think we found cancer” statement like it was yesterday. Crazy that it has been 10 months … so very crazy! Every 4 weeks for the last 10 months, I visit the oncologist’s office at the UCSD Cancer Center. Every 8 weeks, I get a Contrast CT Scan. This past Monday (Sep. 10), I got yet another Contrast CT Scan to check on the status of my cancer. This time around, I did great with Scanxiety (anxiety that comes leading up to / around scan time). Actually, no scanxiety leading up to this scan. But later that same scan day, it hit me I had not heard from my Nurse Practitioner (NP) … and so many times before, they text me the same day to give me the good news on my scan. So of course, at about 7pm that day, I realized I had not heard anything … thus my mind starts racing. Trying to keep my mind from racing can be a challenge! I definitely don’t like the dark places my mind goes. Happy to report, Tuesday morning I heard from my NP and all is stable, which is good. Sure, I would love to hear that there was shrinkage, but my oncologist and my NP told me long ago, that getting news that my cancer is “stable” is good news in their eyes. I totally understand that, but that does not change the fact that I have very high aspirations of achieving NED (No Evidence of Disease). Then later on Tuesday, I saw my thyroid doctor, yep, I am hypo-thyroid too. My doctor is great. I got to share with him my latest and greatest since I only see him once a year, I had to inform him of my new normal in regards to my cancer. He was funny, acknowledging that compared to lung cancer, I am probably not so much concerned about my thyroid. I told him that unfortunately, yep, he is right. He asked about who my oncologist was, I told him Dr. Bazhenova. He was very familiar with her. Then he asked what I found to be a very interesting question, he asked how often I actually get to see her. He acknowledged how in demand she is / how big of a name in lung cancer she is. It felt good to hear this about my oncologist … especially since I told him I probably see her every 4 out of 5 appointments. I went on to say how great both she and her team are. I have said this before and I will say it again, I am so over the top stoked on how great of a team I have! So that brings us to today … yep, same routine: drive to UCSD Cancer Center, get blood draw, Xgeva injection, visit with Dr. Bazhenova, visit with my Clinical Trial person, pick up my Afatinib prescription for the next 4 weeks, fall behind on work as I am at the Cancer Center for about 2 to 2.5 hours … yep, pretty darn routine, pretty uneventful. But given the cancer is under control and it is not growing – I will take “uneventful” any day! So all good for the next 8 weeks! Yep, living 8 weeks at a time, my new normal. Thank you all who are subscribed to my blog. Have a great rest of the week and of course, as always … F’Cancer!
Tag: ucsd cancer center
Who doesn’t like talking about poop?
I tend to be a rather open person … when hanging out with friends, we talk about what is going on in our lives. For me lately, it tends to be a lot of conversations about pooping. I don’t think I am one to complain. But I am one to share and be open (I hope I don’t come across as a complainer). And given that side effect #1 of this cancer fighting drug is diarrhea … although it is not quite diarrhea, but it is diarrhea-esque … and for simplicity’s sake, I often just refer to it as “diarrhea”. So on to why I am doing this post … Yesterday was one of those more difficult days … after 3x going to the bathroom in the morning, I was in a good amount of pain for a large part of the day. I gave my nurse the heads-up and they wanted to see me today to assess things and try to make this situation better. So after about an hour of talking about my pooping, we do have a plan. A 3-tier plan actually. We will try tier 1, see if that works. If not, we go to tier 2 and so on. While we will not make things 100%, this is a side effect of the drug after all, we can make my mornings / days much better according to my nurse practitioner. It was a good appointment and I always enjoy spending time with her. So here we go, attempting to make my trips to the bathroom less frequent and hopefully with that, less pain.
One of the highlights for me in this morning’s appointment, she did state that my cancer is a slow-growing cancer. That was GREAT to hear!
Other things / updates in my life:
1. I have started the Keto Diet. I have been doing this for about 3 weeks. My Oncologist / NP are fine with this, they don’t have any opinions for or against my doing this diet. I am doing this for 3 reasons … #1, help fighting the cancer, #2, I have a bit of a fatty liver and this should help with that. And #3, to lose some lbs. Thus far a feel better, have more energy and my clothes are starting to fit a bit differently … so far, so good.
2. Boys started back to school last week … so summer is officially over. It was a great summer & many great memories were made.
3. Cancer sucks … yes, an understatement. But it is crazy … I have several friends each battling cancer … each one a different form of cancer. What the Fuck? One never knows exactly what to say to a friend who has cancer, but I hope I can provide some support, some comfort … I hope I can help inspire these friends to fight a strong and good fight! I so want them (and me) to kick cancer’s ass! It is funny, I am fighting cancer, but I still don’t think it has hit me 100% that I truly do in fact “have cancer” … and I always seem to be so sad when I learn of a friend who has cancer (or any health problem) … but I don’t always make the connection that I too, have cancer. I am not sure I am doing the best part of conveying my feelings on this … all I know, there is TOO MUCH fucking cancer going on!
4. Now some sad news: I had a friend I met through one of my online support groups. We had a good bit in common. Both Stage 4 Lunch Cancer patients, both had 2 kids, both are young as far as lung cancer goes (she was 12 years younger than me), both are here in San Diego county and both go to UCSD for our treatment. She was not EGFR and she had to do chemo and other treatments that I have not done … so while we had a bunch in common, we also had our differences as far as lung cancer goes. We would FB messenger each other a decent bit, but then we did not communicate the last few months. I reached out to her, no response, I then learned that she lost her battle to cancer on August 8. As I type this, the hairs on my arm stand up and I am starting to tear up. She was such a sweetheart and she had such a positive outlook. So very sad she is gone. So sad for her husband and her 2 kids. Not much else to say other than: FUCK YOU CANCER!!!!
I am not sure how to follow #4 with what is going on in my life … other than I will continue to fight. I will continue to work to get this last lesion in my left lung to shrink to nothing. My goal is NED (No Evidence of Disease), Thank you to all of the support from family & friends! I am a strong and stubborn SOB … I will beat this. I am not fucking going anywhere!
F’Cancer!
Can’t we just say NED and call it the day?
Today was a FANTASTIC day! I met with a physician’s assistant at UCSD. Dr. Bazhenova is speaking in Canada about lung cancer and Jennifer (my NP) is on vacation out of the country. The nice thing about UCSD, everyone I have met there has been so great! And today was no exception. Today was another day of great news! While there have been two lesions in my left lung … yesterday’s Contrast CT Scan now only shows one lesion. Yep, that is right, the other lesion shrunk down to nothing! Now here is where I wish things could be nice and black n’ white. The remaining lesion has not done anything in the last 16 weeks as far as changing size. It could be that this lesion is not cancerous. It could be scar tissue, it could be something else, there is the chance that this 1.3 cm lesion is NOT cancer. So of course, I want to find out if it is or not. I want to know if I am truly NED (NED = No Evidence of Disease). I want there to be celebrations, bells ringing, fireworks, high fives, everything that would come with the celebration of “NO CANCER!”. But here is where I will just have to live with the not knowing 100%. Options in finding out if this lesion is cancerous … They could biopsy it, but why stick a needle in my lung if not absolutely necessary. They could remove it … but again, why have lung surgery if not absolutely necessary. We could zap it with radiation, but what if somewhere down the road, I might need radiation in the same spot / same area, they would not be able to do radiation in an area that already had radiation. So in the end, none of these possible scenarios to find out if the final lesion left is actually cancer are a good idea. But FANTASTIC news … no cancer in my back, down to one one lesion in my left lung … and quite the possibility that this final lesion may not even be cancer! Now that makes today a very, very good day! Am I NED … quite possibly so!
Now, just to share my “needle issues” from yesterday & today: Regarding yesterday’s Contrast CT Scan, I just have to share the not so fun part of yesterday & today. I think I jinxed myself. As they were taking me back yesterday, the nurse asked me if I have had a Contrast CT Scan before … I made light of it, mentioned how I get these every 8 weeks and they are a piece of cake. Well, I spoke too soon. After a couple of scans without the contrast fluid, they then announced the Contrast fluid was about to be injected into my blood stream. They had set up an IV for this. Well, as the fluid was to be entering my blood stream, I felt a pain in my elbow. I had not experienced this kind of pain before during the injection. It turns out, my vein was not taking the fluid. So they had to remove the IV and try it again, this time in my other arm. That did not take either. Apparently I was a bit dehydrated. They brought in a new nurse, for her to try … nope, she poked my left arm, failed. She then poked my right arm, failed. So then they brought in nurse #3. This was getting frustrating, but at least nurse #3 was quite cute, so I had that going for me. But I was not happy about my getting poked by a needle a 5th time. She did a few things to prep my arm and in the end, apparently 5 times is a charm. The 5th one took. But then fast forward to today’s blood draw. After my arms were just a little bruised, the NP today, when she went to inject me for the blood draw, she did not succeed, so she had to get a 2nd nurse. I was thinking to myself, “what the hell is going on here?!?” Luckily the 2nd nurse succeeded on her first try. I am not afraid of needles, but I definitely don’t love them either … hopefully yesterday’s and today’s issues with the needles is a one time occurrence and this does not become a regular thing.
But back to the GREAT news … one lesion in my left lung … and possibly not even cancerous. Am I NED? I sure as heck would like to say I am … And with that I will end this post. Today was a FANTASTIC day! And as always, F’Cancer!
Contrast CT Scan time!
Blood draw and Xgeva Injection time!
Finding my quarterback
Fucking cancer!!! You wanna talk about one’s life being turned upside down?!? After 5 days in the hospital. In the process of getting 10 radiation treatments. Time came to meet with a pulmonary specialist and also to find an oncologist. In my time at Scripps Hospital Encinitas, I met with several doctors and higher ups. The Chief of Staff of the hospital visited me on more than on occasion. I also met an oncologist at the hospital who I was very impressed with (we talked on 2 occasions while I was in the hospital). Life after getting out of the hospital was a bit crazy to say the least. Many Dr. appointments, working, trying to keep things as normal as I can for my boys. After getting out of the hospital on Nov. 14, I met with Dr. Makani of Coastal Pulmonary Associates on November 16. I was very impressed with him and we had a great meeting. He talked to me about finding an oncologist being my next step. I learn that my oncologist would basically be the quarterback of my team. I told him I was to meet with Dr. Bessudo, whom I met in the hospital. But I also asked Dr. Makani for referral to other oncologists. I wanted to meet with at least 2 oncologists. Given I don’t think I have even used the word oncologist before my diagnosis, this was quite the daunting task! I need my quarterback to be THE BEST! And I have never shopped for an oncologist before. The next day (Nov. 17), I meet with Dr. Bessudo (oncologist) at his office in Encinitas. While I was very impressed with him in my 2 meetings with him in the hospital, he seemed a bit scatter brained in our meeting — and on top of that, I was not overly impressed with his office and his staff. From my meeting with Bessudo, I decide that I for sure want to meet with a 2nd oncologist. In my looking for referrals and my parents looking for referrals, one name kept coming up: Dr. Bazhenova at UCSD. I ping Dr. Makani asking if he can get me an appt. with Dr. Bazhenova. I send this message on a Sunday and by that Monday afternoon, I get a call asking if I can come in that very same day. I unfortunately could not due to my radiation appointment that afternoon. They were able to get me in 2 days later – on Wed, Nov. 22 (the day before Thanksgiving). We have a 1 hour appt. at 3:30pm on the Wed before Thanksgiving – Mo and my parents join me – and I will tell you what! When it is right, it is right. We all fell in love with both Dr. Bazhenova and her nurse practitioner, Jennifer Dvorak. The 2 of them have been working together for 7 years. They only deal with Lung Cancer … where as some oncologists deal with different cancers, Bazhenova only does lung cancer. And not only that, she also writes about lung cancer. She really knows her stuff. The meeting went so great. I told them I was going to take the weekend to make a decision, but the reality, decision was made – we found my quarterback!