Journal entry by Kristan Jones —
Hi Team!
I know it's been a long time since I last posted, but I've been processing a lot of feelings, events, and changes over the last few weeks.
Last week, on July 27th, I started the third phase of my treatment- radiation and chemo pump Monday -Friday for six weeks. This is to "clean up" any random or leftover cancer cells that may be in the pancreas or floating around in my body. Modern medical science is amazing and blowing my mind at how specific and effective it can be; especially since cells are tiny.
I've not had extreme side effects; however, after surgery, I struggled with being able to eat and feeling ok afterward; I felt bloated and full and my back hurt terribly. The only relief I could find was a HOT shower, some days 2-3. I would close my eyes a pretend I was back at the underground spa in Asheville... A little projection always helps. So after losing over 20 pounds since June 12th, not the good way, my surgeon decided to add a pancreatic enzyme to my regime... Creon. It has helped immensely, and I have to take one pill (so far) at breakfast, lunch, and dinner. AGAIN, so thankful for insurance since these pills are $1500 for 20 days worth, and I'll probably be taking them for the rest of my life. I also had my 2 month MRI yesterday (7/31), and I'll get these every 2-3 months for the next two years... Keeping an eye on things. This is where we cross our fingers, say prayers, send love and light for (a new cancer term) NED- no evidence of disease. This is what we warriors get scanxiety about prior to each scan and while waiting for results.
It's a new normal, but I guess I'm adapting to it. I was already an anxious person, but I have to deal with this whole situation better. I keep thinking that I'm just dreaming all this, but recently I've realized it's not... My hair isv thinning & my face is terrubly broken out, & I officially resigned from my job on July 31st, after confirming with all three oncology doctors that this was best. McKenzie (surgeon) said, considering I'm still trying to learn to eat without fear, low energy, and have 6 weeks of radiation to go; it's a good plan to just plan to heal. Meeneghan (medical) agreed even without Covid-19 out there that it's not the best scenario to return, and Teirany (radiological) mentioned that I didn't even know how radiation was going to affect me in the long run--it tends to wear folks out, and I'm already napping about two hours a day. Alan has been relatively silent about the choice, but he definitely supported, whole-heartedly, my choice to resign after I decided to do it. It's just so hard because I've never had to do this, and I really liked my path/trajectory; now I just don't know...
I am about to start a Zoom support group through PanCan (thank you, everyone, for your donations), and I stay involved in two FB groups... I'm an information seeker and problem-solver; so this is a new challenge for me since 'every patient is different' and I can't solve this problem except by going through it and working on ITS time. I spend time daily reflecting and journaling and having conversations with God. I'm accepting the fear, a little at a time.
This first week of radiation and chemo caught up to me on Friday; I get iv fluids on Monday and Friday (and next week on Weds too); so I'm at the clinic for about 3.5 hours. I feel slightly nauseous but on Friday had to get a second dose of meds. I just wanted to cuddle up in my bed and sleep. The good news, after our electricity came back on (during a HUGE storm) & after I had my MRI at 630... I got a mini Blizzard for being a good patient! Took my Creon, and everything went down fine. I have to just eat tiny snack meals all day!
There's always a silver lining...
#TEAMGONEYAY!
I know it's been a long time since I last posted, but I've been processing a lot of feelings, events, and changes over the last few weeks.
Last week, on July 27th, I started the third phase of my treatment- radiation and chemo pump Monday -Friday for six weeks. This is to "clean up" any random or leftover cancer cells that may be in the pancreas or floating around in my body. Modern medical science is amazing and blowing my mind at how specific and effective it can be; especially since cells are tiny.
I've not had extreme side effects; however, after surgery, I struggled with being able to eat and feeling ok afterward; I felt bloated and full and my back hurt terribly. The only relief I could find was a HOT shower, some days 2-3. I would close my eyes a pretend I was back at the underground spa in Asheville... A little projection always helps. So after losing over 20 pounds since June 12th, not the good way, my surgeon decided to add a pancreatic enzyme to my regime... Creon. It has helped immensely, and I have to take one pill (so far) at breakfast, lunch, and dinner. AGAIN, so thankful for insurance since these pills are $1500 for 20 days worth, and I'll probably be taking them for the rest of my life. I also had my 2 month MRI yesterday (7/31), and I'll get these every 2-3 months for the next two years... Keeping an eye on things. This is where we cross our fingers, say prayers, send love and light for (a new cancer term) NED- no evidence of disease. This is what we warriors get scanxiety about prior to each scan and while waiting for results.
It's a new normal, but I guess I'm adapting to it. I was already an anxious person, but I have to deal with this whole situation better. I keep thinking that I'm just dreaming all this, but recently I've realized it's not... My hair isv thinning & my face is terrubly broken out, & I officially resigned from my job on July 31st, after confirming with all three oncology doctors that this was best. McKenzie (surgeon) said, considering I'm still trying to learn to eat without fear, low energy, and have 6 weeks of radiation to go; it's a good plan to just plan to heal. Meeneghan (medical) agreed even without Covid-19 out there that it's not the best scenario to return, and Teirany (radiological) mentioned that I didn't even know how radiation was going to affect me in the long run--it tends to wear folks out, and I'm already napping about two hours a day. Alan has been relatively silent about the choice, but he definitely supported, whole-heartedly, my choice to resign after I decided to do it. It's just so hard because I've never had to do this, and I really liked my path/trajectory; now I just don't know...
I am about to start a Zoom support group through PanCan (thank you, everyone, for your donations), and I stay involved in two FB groups... I'm an information seeker and problem-solver; so this is a new challenge for me since 'every patient is different' and I can't solve this problem except by going through it and working on ITS time. I spend time daily reflecting and journaling and having conversations with God. I'm accepting the fear, a little at a time.
This first week of radiation and chemo caught up to me on Friday; I get iv fluids on Monday and Friday (and next week on Weds too); so I'm at the clinic for about 3.5 hours. I feel slightly nauseous but on Friday had to get a second dose of meds. I just wanted to cuddle up in my bed and sleep. The good news, after our electricity came back on (during a HUGE storm) & after I had my MRI at 630... I got a mini Blizzard for being a good patient! Took my Creon, and everything went down fine. I have to just eat tiny snack meals all day!
There's always a silver lining...
#TEAMGONEYAY!
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