Hold on tight, this is a long post as a lot has happened in the last three weeks!
The regimen was the same where I premedicated with Dexamethasone 8 mg (steroid) and Pepcid twice a day for two days before the infusion. Then I get IV medications before the chemo bags with 1/1000 of the chemo, 1/100 of the chemo, and 1/10 of the chemo. Then another round of IV medications before the remainder of the chemo.
15 minutes into the FIRST bag of chemo, I started getting chest tightness, shortness of breath, and turned bright red and itched all over. The chemo was stopped, the emergency bell was rang, and all the nurses came running. Thankfully, I had amazing staff and Nurse Practitioner that handled everything quickly. I was given a different IV steroid (Solumedrol) and more IV Benadryl and placed on oxygen. My oxygen saturation was good but that was done out an abundance of caution.
We waited until all the symptoms had resolved and Rebecca started my chemo back at a slower rate and I was able to complete the rest of the bag with no issue.
Once the second bag of chemo was running, I started getting an itchy neck and hands. My face turned a bit red but nothing like the first reaction. So repeat the whole thing over: stop chemo, Solumedrol, Benadryl, wait for reaction to pass.
We were able to finish the rest of my infusions without a problem: all the rates were slowed down and I had a lot more Benadryl and steriods on board. This also meant that we opened the chemo room at 7 am and didn't get out until 5:45 pm. So what better place to do my penguin face mask my best friend Susan gave me?? Of course this got some laughs.
Wil and I have been praying for God sightings during these tough times of treatments. We were able to be there after hours when another patient came back needing help having severe nausea and vomiting after her IV iron infusion. We were able to pray for her and the staff and hopefully give her comfort. She was worried that she was the reason the staff had to stay late, so we were able to let her know they were already there for me!
Since I had some pretty bad nausea for days after my first round of chemo, a medication was added for me to take after to help reduce the side effects, Zyprexa which is an antipsychotic... Weird, I know but it worked! It did absolutely knock me out where I slept so hard I straight peed the bed that night. Ah the joys of side effects that are so glamorous. I'm waiting for one of the side effects to be a six pack, thick hair, long eyelashes, something good!
Fast forward to Sunday 9/25 at 12:30 am when I am awoken with a sharp pain right below my breast bone. I assumed it was acid reflux (which I am on prescription medicine twice daily) since I had burping too. I was up until about 4:30 am with the pain that wasn't relieved with Pepcid, Tums, and milk. But I powered through the pain because I was going to this awesome training by Shelby Miller and Galderma (an aesthetic drug company) in Charlotte with the doctor and PA I work with.
The training was great but the symptoms persisted and we're beginning to worsen. Then it dawned on me and Wil at the same time that this could be another bowel obstruction. So I called my on-call nurse for oncology. I was given the option to try to wait it out at home or if the pain was bad enough, I needed to go to the ER.
I got home around 3 pm, and we decided to go ahead and go to the Clemmons ER so wer weren't doing all this late at night. Wil's parents are amazing and came and got the kids after we packed all our bags for a possible 5-6 days stay. We let the registration lady know that I am on chemo and could have low immunity, they worked with us and let us sit separately from all the other sick patients.
Labs were drawn and X-rays of my belly were taken. Then I got a room pretty quickly. My portacath (permanent IV in my chest) was accessed, pain meds given, and a partial bowel obstruction was seen on the x-ray. For a better view, I had a CT scan which verified the partial bowel obstruction. This is occuring because the tumor is sticking and causing the bowels to kink off. This time, it wasn't all the way kinked which was the good news. Unfortunately, this is treated the same way with getting the tube down my nose that goes all the way into my stomach to drain my stomach fluid (NG tube) and I was put on NPO diet (meaning nothing by mouth). I started getting a nosebleed right before they put the tube down so I asked for Afrin which helps to close the blood vessels off- it worked and I had no bleeding after having the tube shoved down my nostril.
At about midnight, we got the news that I had a bed on 9th oncology floor. When the ER nurse called to give report, she said they responded with "Oh we know Katie!"
So I get loaded into the critical care ambulance and Wil follows in our car after stopping to get my pillow from home.
I spend the whole night so nauseated that I am continuing to throw up, around the tube despite the tube being hooked to suction to drain stomach contents. Finally, I get IV Phenergan (anti nausea medication) at about 5 am which finally works. I sleep for almost 12 hours (all day) but I had been up the last two nights and needed the rest.
By Tuesday, we get the go ahead from my PA Emma and oncologist that we could clamp my NG tube and start clear liquids. It is SO HARD to try to swallow with the tube going down the back of your throat.
When my oncologist came by that afternoon, I asked if we could pull the NG tube. We got the green light to get it out knowing that if I didn't tolerate the clear liquid diet, I would have to get it put back in. I was up for the challenge. I did make Dr. Skinner pull it out, I wanted it out ASAP and plus my surgeon (Dr. Stuart) pulled it out last time, so it was tradition!
We did discuss it/when I get another bowel obstruction, we will have to consider getting a permanent drain in my stomach (G Tube- stands for gastric). This would be a valve that would be on my abdomen and allow me to drain my stomach without having to get the tube shoved down my nose. I could even try to manage the obstruction from home and only need to go to the ER for medication management if I needed.
It is such a sweet relief to be able to swallow, clear your throat, and drink cold water!
I was discharged Wednesday afternoon after I tolerated advancing my diet and did well with regular food for breakfast.
The plan was still on to meet Dr. Skinner on Monday, 10/3, to go over the game plan and get labs for chemo on Wednesday, 10/4. Unfortunately, my platelets were only 81- they need to be over 100 for treatment. My premeds we're changed back to the old protocol to ensure no further allergic reaction. This increased the steroid from 8 mg twice a day to 20 mg every 6 hours (around the clock), adding Benadryl, and increasing the Pepcid to every 8 hours all for two days prior to treatment.
Dr. Skinner gave us the option of stopping the premeds and holding chemo for a week to allow my body to produce more platelets or stay on the premeds and recheck my platelets Wednesday and try for chemo, knowing that if they aren't high enough, I would be sent home and have to wait a week anyway. My bone marrow doesn't work as well as the average Joe's due to all the chemo I have had over the last 10 years. We have to be really careful as platelets are essential for clotting your blood. Getting a platelet transfusion wouldn't help as it doesn't fix the underlying issue that I'm not producing any of my own. There is nothing I can do to increase platelets other than time to recover from chemo.
Wil and I both wanted to at least try especially as my platelets last round increased from 105 on Monday to 258 by Wednesday.
So here I am at 3 am, wide awake from taking my meds at 2 am, and with a gnarly headache to boot.
Prayer Requests:
1. Praise my bowel obstruction was able to resolve on its own and resolved quicker than my previous obstructions.
2. Pray for protection from bowel obstructions while we wait for chemo to shrink the tumors, so I can avoid getting the permanent stomach drain.
3. Pray for my bone marrow to kick it into high gear and my platelets to be well over 100 Wednesday morning!
4. Pray the change in premeds helps prevent any allergic reaction with the next chemo.
5. Pray for wisdom, guidance, and protection for our kiddos as it isn't easy having to deal with all the effects of having a mommy with cancer.
