Sunday, January 21, 2018

Not a great start to the year...

Happy 2018!

2017 was pretty good to the major illnesses, a cruise to the Bahamas, a new dog! I hope you all have plenty to be thankful for from 2017 as well.

The kids are all happy and healthy. We have thankfully avoided most of the yucky bugs that have been spreading around. LOL School is...well, school. Jackson keeps asking when summer break starts and with all this cold lately I can't say I haven't thought the same! Pinewood Derby is this week and his uncle Shane just "helped" him build a pretty cool car. Fingers crossed! Audrey is in the full swing of dance choreography. She is loving her dances and loves her new studio more and more! Shelby is WORKING. My baby is old enough to have a job! She is at Jimmy Johns and I think spends more money there than she actually makes! She orders it delivered to the house when she's not working. Haha! She still hasn't decided to drive. I'd rather her wait until she is ready so no rush. Max is good too. Ha! We really lucked out with this dog and couldn't ask for a better rescue.

So here's my story. Our cruise was the middle of December. Since then I have had severe abdominal pain about 4 times. Each time it would last about 12 hours and then go away. Well, last time it didn't go away, so about 24 hours in I took myself to the ER. They did a CT and said they thought they saw something called in intussusception which could require a surgical procedure to fix. It basically means the colon telescopes in on itself thus causing pain. If it gets stuck like that it can be more serious but they wanted to perform another test the next day for verification. I was admitted overnight. The next morning they took me down for the test, but were unable to perform the test because I still had contrast in my system from the CT the day before. I asked to go home since I wasn't having anymore pain and I was HANGRY. LOL I was discharged with instructions to follow up with surgery as needed, see my general practitioner, and return to the ER with any more pain. (In this hospital visit I saw 3 doctors. Keep that in mind.)

I made an appointment with my doctor for the following Thursday. I called my oncologist because they told me one reason for a possible intussusception was a colon mass or polyp. She and I discussed this and her recommendation was to see Dr. Bhutto (general doctor) and still have the test performed that they weren't able to do Friday. (Doctor number 4.)

I saw Dr. Bhutto last Thursday. He said he saw three issues.
1.Kidney Stones (duh.) He thinks I should have them removed because they are starting to possibly affect my kidneys.
2.Narrowing of the colon. He thinks this is what has been causing my pain and the telescoping. He recommended seeing my GI, Dr. Walden to see about opening up that narrowing. With this statement he concludes that maybe Dr. Walden could also look at the spot on my LIVER.
3.1.9cm spot on liver. WHAT? Poor guy didn't expect the tears that started to flow at this point. I informed him that this was exactly what Dr. Kosuri would expect for my cancer if we were to have a recurrence.
(Doctor number 5.)

Needless to say I called Dr. Kosuri as soon as I left the office. She was gone for the day so I spoke with the nurse. She looked over the CT and said "Oh, I see here it says follow up with MRI (I don't remember this part) for METASTASIS OF DISEASE. How is it that I have talked with 4 doctors without this knowledge AND sat in the hospital for 24 hours without this test being performed!?! Dr. Kosuri called me back Friday morning and profusely apologized. She says that since I only called her about the intussusception she didn't look at the rest of the results but that yes, we needed to do an MRI. The test is ordered. I called immediately to schedule, hoping to get in that day. No such luck. Due to my work schedule this week I am not able to get in until Thursday. I may have a "hook up" lol that can get me in Monday so I have made myself NPO as of midnight tonight hoping that this will pan out.

Everyone thinks its dumb, but I am already at peace with it. If it is a spread of my cancer, so be it. Let's deal with it and move on. Unfortunately I have only built up 3 weeks of sick time since my last FMLA but we will make it work. I feel like if I don't think the worst, I will be more devastated if I am hit with the news. Tell me it's not and lets have a freaking party! We have already told Shelby and Audrey and they are rightfully worried. It's hard to see their momma sick.

Wear your shirts this week and I will update you when I know more. Think positive! Love you all!


Sunday, April 23, 2017

Wow! Has it really been a year?!?

Surgery was April 19, 2016. I celebrated by bringing new babies into the world! I can't believe how quickly this year has gone by...

Since my last post in September I have had another CT scan that was clean! Woo hoo! That was back in February. The oncologist was nice enough to tell me I had kidney stones waiting (which I experienced a few weeks ago thank you very much) but nothing else to report. I have a PET scan scheduled for the end of May. They are scarier since they look everywhere and take longer. I seem to cry during every test though just bc of nerves so it won't be any different... turned 40. Eek! My mom and besties took me out for the day and then my mom had a surprise party. It was fun and I was so excited to see everyone that made it to the party! Audrey had a dance competition on my actual birthday. Not the way most would want to spend their 40th, but a dance moms gotta do what a dance moms gotta do!

We Got a DOG! His name is Max...and he's awesome! So far (48hrs) he hasn't had an accident or tried to destroy one single thing! He's so cute! 

Saturday, September 3, 2016

Glad that's over!

Sorry I haven't posted any updates recently! I feel like the past 3 months have flown by, which is not a bad thing given how crappy I felt!

My last post left off the day of my first treatment. That was a horrible week. Lots of nausea, very little eating/drinking. I ended up going to the ED once for fluids only because i had dropped 15 lbs and my oncologist was worried my electrolytes would be out of whack. There were fine. Probably the only bonus to starting out chemo overweight is that you have the weight to lose...I went to the ED on Monday night and Tuesday morning woke up feeling amazing. We're not sure if it was because of the fluids or because it had been a week since treatment. Whatever it was, I didn't care!

The second treatment was a little better, only because I don't remember it. Haha! Jackson went to Papa Roy's and the girls were at church camp for the beginning of the week. I took Ativan and Phenergan every 6 hours around the clock and slept through the next week. I felt bad that I wasn't "present" for the girls, but Jamie and my mom checked on them and kept them fed! My mom even taught Audrey to mow the yard!  Woo hoo!

The third treatment I think my body was finally getting used to the chemo. They give you premeds every treatment for nausea, and they are supposed to last up to 5 days. That had not been the case thr first two treatments, but I could definitely tell a difference this time! I didn't sleep through the entire week, but Jackson did go play with Papa Roy again just in case.

Dr. K had prescribed an oral chemo that I was supposed to take the entire 63 days as well, but it made me pretty sick. We decided to cut it from the regimen and just go with the IV stuff. I was really thankful for that decision, but will kick myself if I have a recurrence.

Speaking of recurrence, I had a CT this week and a followup Dr. appointment. The scan was clean. Amen! At my appointment I asked what the percentage of recurrence is. She stated that in her experience she would say 25%.  To most that may not seem like a big number, to me that is huge! A one in four chance I may have to have another surgery and more chemo? Come on! My mom is trying to be a positive force for me but I will admit I still have doubts. Dr. K said if it comes back it will most likely be in my liver. Ok, I can live without some of that. But it's just ANOTHER surgery and more CHEMO?!? Ok, say it with me, CANCER SUCKS.

I'm going to revel in the fact that I am currently cancer free, my hair will grow back, and I have a celebratory cruise in less than 2 months! My next CT will be in 3 months. I hope to not have to update until then!

Tuesday, June 7, 2016

The next 63 days... was the first day of the 2nd round of chemo. I had labs, which were low but fine, met with the doctor, and then had a 6 hr treatment. The last time they kept telling me how the rest of the treatments would be much quicker BC they had to see how I reacted to those meds first. They didn't tell me that this time, which leads me to believe the other 2 treatments will also be 6 hours. 😒

Jill and I talked a lot, had lunch, and I took a nap. No surprise, right??

Dr. kosuri says the rest of this week will be yuck and that i should feel much better by this time next week. Almost back to normal in fact!  Two weeks of feeling good...and then we do it again.  I was told multiple times to start taking my anti-nausea meds TONIGHT and take it every 8 hours for at least 2 or 3 days. I also got a new script for another med for nausea. That makes 4! Sheesh!

I will start taking my oral chemo tomorrow and will take it 2x a day. She thinks my hair will start falling out in 2 to 3 weeks. I have to also have labs drawn weekly to make sure my blood counts don't drop too low. If that happens I will start getting shots to keep the counts up.

I think that's it, right Jill?

I'm going to bed. Shelby is in summer school and has to be there at 8. Jack decided not to go after attending one day. ..and I wasn't going to argue. 8 to 3...4 days a week...for a month. That's a lot! I'm a little worried about keeping them occupied the rest of this week though!

63 days. Now 62 days. 😘

Saturday, May 14, 2016

Almost one month...

It's hard to believe surgery was almost a month ago! 9 days in Barnes, 11 days at my moms, and we have been home almost a week! Wow! Time flies! My mom and Michael were wonderful and let me sleep in their bed since there was a bathroom in their room...they slept downstairs on the extra bed. I'm sure Michael just enjoyed me cooking a few meals! Haha!

As most of you saw on Facebook, Dr K has decided bc there was tumor coming through a lymph node we were unaware of, another 2 months of chemo are necessary. I can't say I'm happy but I also want to be completely DONE with this crap!

I'm am tired tired tired of not being able to eat what I crave. I have advanced myself to softs so that I have a little more to choose from. Eggs, pasta, etc...but what I really what is a freaking cheeseburger or steak. Mmmmmm....I'm such a red meat fan. Can you tell? Ha!

My incisions are all healing really well! The only problem is this stupid feeding tube. It's kind of coming out on its own so I'm excited to have it removed Wednesday at my follow up with Dr Patterson. My mom and Dr K are interested in keeping it since I won't feel much like eating with chemo but I'm over it. I'll figure it out. I'm already down a little over 20 lbs but they said to except this. Give me red meat!😆

I'm so glad the kids are almost out of school. Let's see how long that lasts;) shelby and Jackson are going to be in summer school for a month so it's not completely out of school but at least Audrey will be home! They all have VBS, church trips, a new studio, band camp, it's going to be an awesome summer! I hope I have energy for all of it!

I love you all! The benefit was amazing! Jamie, mom, and Michelle did an awesome job putting it together and are so glad it's over! Haha! It was fun and definitely helpful to my little family over the next few months. Thanks for all the donations as well! AWESOME friends and family. Period.

Love you all! On to the next round!

Saturday, April 23, 2016

Hello out there!

So Tuesday was the big day! We got to Barnes about 845 bc I had to give Dr. Patterson a copy and of the PET scan from Friday. They took me later than 11 I think, but I don't remember exactly what time it was. I did sign up for a clinical trial where they took blood and path of their own tone tested. Anything to try and help figure this mess it out!

I don't remember much of rolling in to the OR but I hear it really didn't take long. 4hrs?? I remember being in the ICU and them tying to extubate me but I kept biting on the tubes and would desat. I was also gagging on the tubes so I'm not sure what I wanted to keep them for! I had to stay one night in the ICU because of the difficult time the had, but am not there now!

That brings me to Wednesday. I was moved to the step down unit. It was more like an old ICU in that there were not doors, just curtains. The ICU was much nicer! I stayed there for a day and then was moved to the floor. Thank goodness we had already put in for a private room! So here it is Saturday already! I have had my art line removed and my peripheral hand line removed so I only have the central and my power port (which has not been accessed). I still have a primrose? Drain by the midline chest incision, a chest tube on my right side which is not putting out more than 50/hr if 8 heard correctly, and my g and j tubes. Tube feeding started in the step down unit and are fine so far. It's going I pretty slow. I have a thoracic epidural, and it is wonderful! I don't hit my button very often and my pain is usually 0-4! Catheter was removed in step down too so I'm walking to the bathroom and doing daily PT. I was on O2 until yesterday morning. Just couldn't keep my sats in the 90s.

As far as I know I will be in this room until discharge. Not sure of a date yet. I have my swallow study on Monday and will HOPEFULLY GET TO DRINK SOMETHING! Not at all the least bit hungry but I would kill someone for water or ice! ;) hahaha! The nurses have all been very nice.

Thank you for all the prayers, calls, messages, and visits! Prayers are being answered! I will let you all know the pathology as soon as I do and whether I will go another round of chemo or not.

Love you all!

Thursday, April 14, 2016

Not what I expected...

I met with Dr. Patterson yesterday...things didn't go quite as planned. First I actually met with anesthesia. The nurse informed me that they would not use my port for surgery because it wasn't good for "resuscitative measures". Who are they going to be resuscitating?? Let's just say that this wasn't the only surprise! The resident said I would have an IV to go to sleep but I would probably wake up with an Arterial line and maybe another line. I will have a thoracic epidural for pain control. I will most likely spend the first night in the ICU or the step down unit. They drew my blood work and sent me to the doctor.

Dr. Patterson came in, sat down, and asked how I was doing. I said the nausea was better but I was still tired. That's when he told me he thought we should wait a week. WHAT?!? He said I have to be at the top of my game going in to this surgery. I should have explained that I had worked 3 out of four days in a row and was just wore out. We decided that I would see how the PET scan went and talk with Dr. kosuri Friday. I will get back with him then as to whether or not we proceed or push it off a week. Now my allergies are hitting and it might not be such a bad idea. 😩

As for the surgery itself, we discussed the abdominal mesh and the Peg tube. He said he didn't think the mesh would be a problem for the upper abdominal incision but that he couldn't put a tube or button through the mesh. 😳 Ok, then what?! He never said. Um...

Needless to say I left with more questions than answers. I fully trust Dr. Patterson and have heard wonderful things about him but people have rearranged their lives for next week and I don't know that I could emotionally wait another week. I think I would just sit and obsess for the next week and a half! I want to be able to get this done! Today I got the kids off to school and didn't take a single nap! Let's pray everything goes as planned, if it's meant to.

And I'm going to kick the next person that tells me how BIG this surgery is. I'm aware.