I got a fever of a hundred and three…

LIT-ER-AL-LY!!   (SING IT!!!)

So my first round of the “new” chemo went… well… interestingly.

I had my “dose” on a Tuesday. No major issues to report. All seemed to be going really well, until I woke up that Saturday morning really early with a bit of a fever. I tried taking some ibuprofen. The fever went up over 101. I took some more ibuprofen mid morning. The fever went up over 102. I went into the Cancer Care Clinic to get checked over, they thought it was maybe associated with my treatment. While there I had some blood cultures drawn to check for infection. They sent me home as my fever went down a little.

Within an hour of being home my fever returned over 103 and I was HOT BLOODED. I was pretty out of it but I ended up getting admitted to the hospital for four days. It took time to figure out what was causing the fever, since I had no other symptoms. They drew more blood each day. I was admitted Saturday and started some pretty heavy antibiotics. I think I found out Monday I had a pretty bad bacterial blood infection. I got to go home Tuesday afternoon with some oral antibiotics. Had to take it easy the rest of the week. I guess a blood poisoning like that takes a little or a lot out of you. Good times… ha.

So I had to finish two weeks of antibiotics and that pushed my next round of chemo off for a week. I was kind of happy about that. Secretly…

But now, I’m back at it. I had my second round of chemo yesterday. It seemed to go pretty good. Better than last time it seemed. I felt better afterward than last time, so that’s good. I feel fine today. I’ve got my little take home pump for 46 hours, oh it’s glorious. Especially with the new cat in town. Steve thinks he should chew on all cords, wires and chemo lines… kind of a pain. I blame Kim.

So, hopefully this week goes better than last time. It sounds like that infection may have been an isolated incident. A perfect storm created by a multitude of possibilities given my recent knee surgery and stent procedure. Who knows. Something could have been floating around and then when your immune system is hit with the chemo it can’t control everything. I’m not too worried about it happening again.

The room I stayed in at Barnes was pretty swank. In the new build area, private room, big screen tv (that Kim couldn’t hear ever). It wasn’t bad once I started feeling better. I really had no idea what was going on Saturday or Sunday until pretty late at night. That high of a fever kind of makes a girl crazy.

The plan now is to get through four treatments, then I can have a scan and we’ll see how things are going. So I think the scan falls around the end of September. Fingers crossed, stay tuned. Kim and I have a vacation planned early October, so there’s just basically no other option other than for things to work and everything to be fine.

Oh and I nearly forgot… Strangely, I still have my hair. Not sure if this next treatment will shoot it out, but we’ll see.  So I can still go down this aisle in Walgreens:

I’m still envious of Baby Changko on instagram:

My only other issue I’ve noticed, besides the near death blood infection sepsis, is my sweet, sweet baby face skin… is no more. I have about one million bumps on my face. It’s very romantic. It’s very common when getting Vectibix. You want the rash, it  means the drug is working… you want the rash. I keep telling myself that. Jill, you want the rash. Kim says it doesn’t look that bad, but she’s also blind. I don’t think her trifocals can pick up all of the little acne bumps.

Oh well, so is life. Thanks for all of your kind comments and words of encouragement going into this new treatment and what not. It is always very uplifting, I can’t ever say enough thank yous…

Cheers!!

Well I’ve been “itching” to do another update, so here we go.

Break is over.

As mentioned in the last update, I had a lovely time in Canada for two weeks (end of May/beginning of June). Kim and I took in all of the sights. We visited the thriving metropolis of Medicine Hat (my home town), beautiful Calgary and the breathtaking Banff (I picture it being announced like in the Busch commercials: BANFFFFFFFFFFFFFFFF).

We returned to St. Louis, I was able to go into work a few days (just a couple of hours here and there)… during that time I developed quite an itch for science… or something. My urine had become pretty dark in color consistently, I realized this was not just your average dehydration. I was becoming quite a miserable “B”, itching everywhere, no rash. After about 8 days of that BS, I was willingly admitted to the hospital in order to expedite obtaining an MRI. We had discovered that my liver enzymes were rising like the summer temps in St. Louis. My bilirubin was also on the rise. Apparently, I had an obstruction near my “duction” (in my liver-bile duct). Bile wasn’t able to drain properly, so it was just collecting, causing severe itching everywhere and maybe adding a slight yellow hue to my already glowing, mother of pearl skin.

I was scheduled the following day to have a couple of stents put in, through an endoscopic procedure, easy peasy. After that it’s been smoooooth sailing. The gates were opened, the bile was flowing, I was no longer yellow glowing. The itching improved and eventually disappeared completely. Oh sweet relief.

Once I felt better it was time to address the “something” that was putting pressure on that duct in the liver. I had a PET scan, it revealed that I’ve got some active disease there. Two spots in fact, one quite tiny, slow growing (we had passed this off as scar tissue from my liver resection surgery until now). I’ve also learned that I have a lymph node or two with some disease involvement (para aortic lymph nodes).

Since finding all of this out, things kind of went into an urgent overdrive. I have sought out a couple of different opinions (outside of St. Louis). It sounds like a new regimen of chemo is the best option to try to shrink these areas. I’ll start this new chemo at the end of the month (July). Surgery is not an option at this time. I didn’t really feel like being cut open…  not in the liver anyway. 😉

I’ve opted for the next standard line of chemo FOLFIRI (this is good stuff: Irinotecan). I’ve finally gone from three strands of hair to five, to likely have it all fall out, in very near future. Oh well, I guess I’ll do my best GI Jane impression soon. These treatments will also have another drug added, Vectibix (I hear its a real peach on the skin-I always enjoyed my teenage complexion-or not having to deal with it anymore, rather).

The silver lining: I had been off chemo since mid May, in order to have my knee scoped (that I hurt curling-YES CURLING-in March).

It ended up being perfect timing for this stent procedure, as I had been off chemo for exactly 6 weeks. That knee surgery was postponed until the week of July 16th. So, I’ll be a whole new woman soon. I can go wig and cane shopping after my prescription for Proactiv comes in. Living the dream!!! Watch out!!

This months update has been brought to you by Imodium, proud sponsor of colorectal cancer patients everywhere (not really, but it should be).

Cheers!!

Jilirubin

IMoJM-

Well the latest update is a good one. I got my results of my scans and bloodwork from the end of May. It looks like everything is back to “stable”. They are just watching a lymph node at this time; it hasn’t changed much since the fall. My blood tests look good (nothing showing up on my Guardant360-blood biopsy), the APC mutation that had surfaced has washed back out with treatment. Whatever was creeping around in the fall, after my last break, looks to be back in hiding or under control (since starting back on maintenance chemo January). This is great news. I’m officially on another chemo break. I’ll have my blood tested each month and have my next scan in August. Nice way to start off the summer, what a treat.

I haven’t been working since mid March, in order to get in some family time and personal time. The family time has been great, much needed and long overdue. We just got back from Canada, who doesn’t love their motherland and hockey?

Kim and I joined a gym (my poor trainer…) and started eating a little healthier. I’m still waiting to hear back from some third opinion locations I’ve sent my health records off to. It seems some doctors are still moving around and others are quite busy. Still in the works.

I’m super excited to take another break and hopefully follow in the footsteps of The Great Teri Griege (ha). I know things won’t always be like this, so I’m going to enjoy it. I know a lot of people that haven’t been as fortunate as me with getting these “breaks”, I wish everyone could experience this… long term.

Cheers all! Hoping for some extended time off, don’t want to have to pull a “Ross”.

This is WAY overdue. Sorry for the delay. There’s been a lot going on-not health related luckily.

I had scans at the end of February. Everything looked good. Nothing new to report. They are still watching a lymph node in the lower abdomen and a bit of inflammation they saw in the lungs i the fall has disappeared (likely just a minor asymptomatic infection).  I’ll be scanned again at the end of May. I will remain on my maintenance chemo regimen. Still getting a short infusion (Avastin) every other Tuesday and taking my pills (Xeloda) 7 days on, 7 off, twice a day. I also had a colonoscopy, which was very “cleansing” and yielded a positive result as well. Everything looked good in there too.

In summary, I’m pretty healthy right now. I’ve been extremely fortunate with how well I’ve been doing. I have met a lot of people, over the last three years, that have not been as lucky as I have been. I witness peoples constant setbacks and others progressions. There are friends that have improved too and remain healthy, and sadly I have had a few friends that have passed away. Through all of this, I have learned that advocating for yourself translates into some success in survival, but there are no “guarantees” in any of this. We can’t control everything or change anything ultimately, but knowledge truly is power in this world. January 28th marked my three year anniversary, since diagnosis. Surviving over 2 years seemed very unlikely given my condition in early 2015. Now I’m three years out, trying to make it to five and then hopefully ten. There’s always something to strive for.

I’ve decided recently to “take advantage” of my good health at this time. It seems silly to wait until your sick to seek out other options or take time off work to wait for improvement. I am currently seeking third opinions at a couple of other institutions (out of state). Those appointments should hopefully establish another line of treatment if needed in future. There are clinical trials offered in St. Louis and at MDAnderson (my 2nd opinion), but it can’t hurt to have a couple of other possible options if my condition ever changes or worsens in future. Since there are no guarantees my health will maintain this course, so it’s best to be prepared for the worst or pretty much anything in between. There are so many ways this could go; I’m trying to prepare myself for any direction necessary.

With all of that being said, I’ve decided to take some time off of work. I’m going to line up these other appointments and spend some much needed time with Kim and my family. It will be nice to hang out at the lake and of course do some other travel in between treatments.

The break should be nice. I’ll hopefully be able to focus a little on getting back into shape too, fingers crossed.

Thank you for your ongoing support and well wishes. It always helps to have that under my belt too. 😉

Cheers!

I had a CT scan recently. They are again watching a couple of areas that are worth mentioning, but unlikely to be anything worth worrying about. It sounds like I can go back on a maintenance chemo regimen  just as a preventative measure (Avastin into ye old port every other week and Xeloda oral chemo pills 7 days on/7 days off). I’ll have another scan in late February to see how things look then. I can put my AFLAC Cancer Plan back to work (making cash money-yo)… Cha-Ching.

I’ve had this happen before, where they just make note of a lymph node that is slightly larger than normal or a spot that is small somewhere. It has always turned out to be nothing of concern in past. I’m always thankful of the very detailed reports sometimes with my scans, as it is a good comparison/reference for future. It is helpful when the reviewing technician is very thorough in these cases. They just have to approach things with caution when dealing with metastatic disease like mine, as it’s usually CREEPing around in there sometimes, waiting for the right opportunity to present itself again.

The moral of the story, my scans look good. I’ll get checked out again in a couple of months. I’m still doing just fine, which is great. Better safe than sorry.

I was quite fortunate to get a couple of cavities for Christmas. I’m pretty happy about that… 39 and I finally got my first two cavities. Hip hop hurrah!

Happy holidays to everyone!!! I wish you all the best in the upcoming new year. Don’t forget to floss.

Jill

Scans and blood work recently reveal a fairly healthy person alive inside of me. I’ve been off of the maintenance chemo regimen since the middle of July. My scans look great, especially for being off of treatment. There is nothing new growing or showing. This is obviously fantastic news.

I’ll be scanned again in about two months. I’ll continue to remain off of treatment, which is awesome. This break has been very nice. It’s great to feel a little more normal, finally. I need to try to get some exercising in, I’m chubbing up (which is way better than where I was a couple of years ago):

THEN

VS. NOW

Anywho, just a short update. Hoping things stay this way for as long as possible, forever would be nice. 😉 I’m extremely thankful for any time I get off of treatment, as most people are not as fortunate as I have been thus far.

I’ll keep you all posted if anything changes. Overall, I feel pretty good. I’m tired a lot, but likely from being out of shape mostly. My immune system clearly still stinks, as I’ve had a cold for almost a month now. Other than that, I’m just keeping busy with work and trying to find some healthier hobbies to occupy my time (a work in progress). The color is AFLAC Black (LOL):

Thank you as always for all of your thoughts, prayers and overall support… clearly it’s “working”. 😉 Cheerio!

It’s update time…

I will set aside my book I’m currently writing, “Everybody Has Back Fat”, and publish the latest update regarding Oh Cancer, My Cancer, ooh la la.

Good news! I had a scan Monday. According to the results things are stable. There is nothing new growing, which is really awesome. They still make mention of a small spot, but things have pretty much remained unchanged for almost a year now. That’s really good for a stage 4 lady of my stature. I was under the impression that it doesn’t mean I am cancer free or in remission, but stability is a very good thing, given the alternatives.

I had asked about skipping a week of treatment while I’m on vacation at the end of the month and was presented the option of taking some time off until my next scan in October (3 months). It’s a tough decision to take time off of treatment, when things are working right now, but I’m going to jump at the opportunity. I’ll have some blood work drawn a couple of times a month, to monitor things that way. It will be nice to have a little break. I didn’t think this would be an option any time soon, so I might as well take advantage of it.

I’m finishing out this week and then I’ll be on vacation(s)… 😉

I can’t help but feel a little guilty with this good news, when I know others are still fighting and some are struggling. I hear of friends on hospice or learn of others loved ones recently passing away. I’ve been on the other end; hearing of remissions and chemo breaks and I know that though envious, it fills you with a sense of happiness for others and hope for yourself. This community instills respect for one another and a general understanding of what we all endure, it can be motivating. I’m extremely happy at this time, as the heat is on in St. Louis… so a break will be nice. As always, thank you for your kind words and thoughts and prayers, it gets a girl through each day…

I am thankful for this good news. I’ll ride it out as long as I can. There are no guarantees in any of this. Many of us live scan to scan or month to month. I’ve met so many incredible people throughout this journey. Unfortunately, some have been overcome by the disease, but many thrive on. It’s not in our nature to give up. We get tired at times and grow weary of having constant struggles, but like everything else there are tiny victories hidden in our trails. We have to look for those, no matter how small. Cheers!!

To small victories!!

Cancer is a persistent little twit, but then again, so am I.

I recently had a scan. The results are in. There is still a little spot on my liver (tiny guy), but nothing new growing. That’s all good news. The maintenance chemo regimen I’m on right now is keeping things stable and under control currently. This is great. I guess I just keep on with it. Chemo forever, as I call it, JK. If I was not on chemo things could potentially start to grow again, as they were before. Better than the alternative, right?

I continue to go to Siteman every other week for my Avastin infusions, and I take the Xeloda (5FU) pills twice a day, for one week on and then one week off. It’s doing what it needs to. I may not be NED (No evidence of disease), but I’m stable and that is far better than having progression at this time. I’ll just ride this out and hope for the best. Hopefully this trend continues for a long time. It could work for years… or for months… so far it’s almost been a year, so that’s great.

At this point in life, I am living with cancer, rather than dying from it.  Hopefully we can continue treating/managing this more as a chronic disease, and not as a terminal illness. It is possible… Fingers crossed… and my lucky rabbits foot from Easter…

Cheers!!

Well, it’s official (almost)… cancer and I have been together for two years now. Two glorious years… I was diagnosed January 28th 2015. It seems like forever ago. We’ve been through so much, cancer and I. We’ve had our ups and downs and ins and outs, but through it all, we are still bound quite tightly. When the chips are down, cancer is there… Feeling lonely, cancer is by your side… I can’t quit you cancer.

I’m getting scans now about every 3 months; a tiny stretch from every 2 months, I call that progress. Baby steps for sure… My most recent scan on Monday, January 24th was another good one. There is nothing new showing up anywhere at this time. There are still a couple of very small, faint spots on my liver they continue to watch. These could be old treated areas from prior resection surgeries/ablations or could just be small unchanged spots of my not so clear and present cancer. The good news is, they have remained unchanged since September. No growth is good to me. Next scan is currently scheduled for mid April.

I’m still having chemo every other week. It’s short and sweet… or neither at times. I get a 30 minute infusion every other Tuesday (see you next Tuesday), but the process varies in length depending on how busy it is or how cooperative I am. I also still take a pill twice daily, a week on and a week off. I’m not the best a remembering to take them, but I have my assistants to help me:

And now, the anatomy lesson. Look away if you’re not a fan of intestines and liver… diagrams…

I found some interesting photos of colon and liver resections if you’re into that sort of thing:

I had the Sigmoid colectomy (F) and the extended right hepatectomy… good to know right?? It’s pretty amazing what you can put your body through and survive… Next time, a video of the full hysterectomy. Just kidding…

Lesson over. Schools out.

Cheers.

Update 11/24/16:

I had a scan last week. The results are in. There is still nothing new showing up, which is great. The current maintenance regimen is working. There’s always the fear of a mutation developing or the cancer becoming resistant, rendering the chemo ineffective. That’s not the case right now. Things appear to be under control. This is great news.

I’m finally at a point in my life, since this whirlwind began, where I feel like I can truly be thankful for things again. It’s the strangest thing.

Two years ago I started to really realize that something was wrong. It would be an agonizing nearly two full months until I would finally learn my diagnosis. What a crappy trip that was. The unknowns were excruciating. When I was told I had cancer I was relieved to hear the words. To finally have an answer to the haunting question. I had racked my brain and swept the internet. The internet is a terrible place to turn, FYI. Everything basically says you’re going to die or that it is cancer…

stubbed your toe: cancer…

graying hair: you’re going to die… probably from cancer…

Much to my surprise, I am not dead (thanks a lot Google). Enough time has passed to process things, to realize this is not a dream. So yes, I can finally be thankful. I accept that there is no cure. I understand what my future most likely holds, but I’m thankful. I am totally thankful.

I have been extremely fortunate to have the best family, gf, friends and doctors anyone could ask for. I would not be here without each and every one of you. Thank you all.

Now please let my fantasy football team win…