So after sharing my exciting news about the tumor marker going down another 2,000 points, I ended up in the hospital for 3.5 days being treated for pneumonia.  I think it’s been there for quite some time, even before the inflammation of my lungs from the immunotherapy trial.

Thursday morning (2/9/17) I woke up with a temperature of 101.5. The night before I had chills so bad I couldn’t get warm until I had a blanket, two quilted comforters, and an electric blanket on me. And, I had my fleece housecoat on too. So the temp wasn’t too much of a surprise. I was also coughing up phlegm that wasn’t pretty.

My oncologist has always told me if I have a temp of 100.4 or higher to call them. So Ray called Mass General and they said to take me to the emergency room for a chest X-ray.

So at the start of the 15 inch snowstorm, we headed to Hartford Hospital emergency room. It was 6:45 am. The place was empty! Yeah for us. They got me into a room fairly quickly and then things slowed down.

I was examined by about 10 people! Doctors, residents, nurses, PAs, etc. The doctor did hear something in my left lung that didn’t sound good. So off for a chest X-ray. That didn’t take long at all. They did put me on oxygen and monitors so I was tied to my bed. Every time I needed to go to the bathroom I had to call the nurse to unhook me. I was drinking a lot of water, so that happened a lot.

Around noon they told me I was being admitted as they suspected pneumonia. Hard to confirm by X-ray alone and mentioned I may be sent for a CT scan. Thankfully that never happened.

I got to my room in the Conklin Building on the Harry Gray cancer floor around 1:30. Considering other times spent in the emergency room, that wasn’t too bad. I must say what a beautiful, peaceful floor. All rooms are private with their own bathroom and shower. Flat screen tvs, several chairs, a couch that expands if needed. The bed was actually very comfortable and the ability to adjust it up and down is always fun!

Once in my room I was hooked up to oxygen, heart, etc. monitor and given fluids and antibiotics via IV through my port. At least I could go to the bathroom by myself. Well, I always had to have the IV pole with me, but I’m used to that.

Along with the pneumonia, I was also fighting mouth and lip sores so they continued giving me Tylenol with codiene. They also gave me a saline solution for help with the healing – just swish around inside mouth. This helped a real lot. I also had ‘magic mouthwash’ a few times.  It just numbs it for a while.

My temperature had to come down before they would let me go home and it wasn’t cooperating. Once it did start to cooperate, I ended up with a bout of diarrhea. Oh that was fun! NOT!  Then to make matters worse, they had to test it to make sure it wasn’t a very contagious virus. That took a couple of hours and then they finally gave me Imodium. They only gave me one, so I took one on my own about an hour later. It still continued, so after the allowed four hour wait, I asked for another one and that finally did the trick. I didn’t need that on top of everything else.

Then even though my temperature was down acceptablely, my white blood cell count was low, so they kept me another night. It was good they did because I ended up having some mild chills that day.

Thankfully the white blood count went up Sunday morning. The only thing I’m concerned about are my platelets being lower than they’ve ever been. These are what help our blood clot, so it’s not good to have them low. Hopefully by the time I see Dr. Zhu this Friday they will have gone back up.

So I came home Sunday (2/12/17). I missed the fundraiser dinner for my Aunt Pat’s Town Marshall for East Hartford for the St. Patrick’s Day parade. I was very sad I couldn’t be there. My wonderful friend, Julie Mangiagli, was there and she videoed my aunt’s speech and sent it to me. That was such a thoughtful thing to do and I was elated to get it. It made me feel that I was there for part of it anyhow.

The Hartford Hospital doctor said it was viral pneumonia. He said the antiibiotics can still help with inflammation, which I’m convinced it did. They did not send me home with any additional antibiotics. They pumped quite a lot into me, so I was okay with that.

I’m feeling better. Temp is normal. Coughing is getting less and less. Mouth is getting better. Oxygen levels are acceptable. I don’t have much energy, but I expect that to improve day by day.

Never a dull moment in the life of a cancer patient.

Bile Duct Cancer Messed With the Wrong Woman

Thank you all for your love, support and prayers. You are my strength!

We’re so excited, I couldn’t wait to let everyone know. I went for my 3rd infusion Friday, the 3rd. Bloodwork is done before the infusion to be sure I’m healthy enough and numbers were good. They also tested for CA19-9, the tumor marker (gives you an idea of what is going on with the tumors) and my numbers went down 2000 points. This is phenomenal news!  That’s just two weeks time since last test when it went down 800 points.

We are very excited as this means that not only have tumors probably shrunk but the inflammation is calmed down too. The real story will be when I have a CT scan in three weeks. That is the true picture of what is going on. Is my miracle evolving???  Only God knows.

I am taking the oxygen once in a while as my numbers continue to go up and down. They are good most of the time, but a boost of oxygen helps out and gets the numbers up higher.

The wheezing I’ve had when I try to lay down to go to sleep is pretty much gone. Which is a big relief as it’s pretty annoying when you’re trying to sleep and have all these wheezing noises coming out of your mouth. In addition, I usually have a coughing fit whenever I lay my head down and those have calmed down too.

Unfortunately, the chemo combo includes steroids that interfere with my sleep. Even if I’m feeling reallly tired, I just can’t get to sleep. I have meds for that and they take anywhere from a half hour to two hours to kick in. I’ve had some nights where I wake up after 4 hours and take another pill to get more sleep and that helps.

There is never a dull moment with our Clementine.

So the funniest thing happened a few weeks ago. We are officially bad grandparents.

Ray and I started letting Clemmy answer the house phone because it’s almost always junk phone. She punches the buttons and babbles away and we get a kick out of it. So, this day Clemmy wanted the phone. It was not ringing. Ray gave it to her. We heard the dial tone and next we heard a phone ringing. We assumed she was calling the last caller. Next thing we know we hear ‘911, what’s your emergency?’ Ray grabs the phone from her and says ‘ oh sorry the baby was playing with the phone’ ‘Is this 214 Chester St?’ ‘Yes’ ‘Is this Raymond’ ‘Yes’. The conversation ended. Ray, Jay and I were roaring with laughter. I said, ‘leave it to you Clemmy to call 911’’. We thought that was the end of it, but it wasn’t.

About 5 minutes later, I see someone coming to the front door.  They have what looks like a cop hat on. Ray answers the door and it’s a lady cop. Clemmy is right behind him. Ray opens the door and says ‘my baby called 911, I already told them.’ ‘Yes sir, but I need to do a walk through’. So he lets her in and she walks through the living room, kitchen and dining room with Clemmy trailing behind. At one point Clemmy handed her her toy!!!! The cop thanked us and left. OMG! We were dying. I guess in this day and age they can’t take chances anymore so they have to come out and check that everything is okay.

Although I haven’t been feeling good enough to go out anywhere, I did manage to go to a family lunch at Carmine’s a couple of weeks ago. Susan picked me up. Aunt Wilma, Aunt Pat, Chickie and Dottie were there. We had a good time talking and laughing.  Even had a conversation about Trump. I had their lasagna and it was out of this world. Of course, right after that my mouth sores started–not good to having acidity foods. It was worth it.

Clemmy and teddy bear discussing game strategy for the Patriots!

Game face on Clemmy. GO PATS!

Tom Brady fans ~ GO PATS!

Today we’re getting ready for the Super Bowl and cheering on our Patriots. Ray and I will stay home. Ray’s going to make lasagna and we’re also going to have cheese and nachos. Jay and Heather were going to Deb & Butch’s but I think only Jay is going. Poor Clemmy has a cold and is cutting her molars so she’s a miserable baby right now. Heather is going to stay home with her. I guess Jay will be Ubering.

There is an organization for my cancer, Cholangiocarcinoma Foundation that has a conference in Salt Lake City, Utah every year.  Patients and caregivers are invited along with physicians, nurses, pharmacutical companies, etc.  It was held February 1 through 3 this year.  I had registered Ray and I because I really wanted to go.  We were going to visit Julie and Kenny in Sacramento either before or after the conference.

Unfortunately, we couldn’t go because I just didn’t have the energy to endure a day of travel across the country and probably wouldn’t have been able to make it to much of the conference.  A few weeks before I got an email from one of the organizers asking me to be part of a panel of patients, caregivers and physicians to discuss communicating about bile duct cancer and clinical trials with patients.  I was honored to be asked to be part of this panel and saddened that I wouldn’t be able to participate.  I’m hoping I’ll finally get to the conference next year.  Both of my doctors, Dr. Goyal and Dr. Zhu, were speaking at the conference too.  The good thing is that they video tape everything and make it available to everyone in a month or so.

February is Bile Duct Cancer Month

It’s been almost 3 years since my cancer diagnosis, May 2, 2014.  I thought it was time to kick off another fundraiser for the Cholangiocarcinoma Foundation (CCF).  They do so much for our cancer community, information for patients and caregivers, discussion groups, among other things, and most importantly research for the cure.  Soon I’ll be posting BeaStrong t-shirts and bracelets for a nominal donation.  All proceeds will go to the CCF.  Of course a lot of you have already bought the t-shirts and have the bracelets, so any donation is acceptable.  Please do not feel pressure to donate at all.  We put in a second order for t-shirts 3 years ago and still have several, although some sizes are limited.  I’m trying to put a promotion piece together and will post when it’s done.  I’m going to post on Facebook also.

Thank you all for your continued support, love and prayers.  It is appreciated more than you can imagine.   You are my strength!