I am still in treatment limbo because I haven’t had my next appointment yet. It
will be December 27th, 2018. But I wanted to make a post about how “normal” I have been feeling lately. To those not facing a terminal illness you may not understand what I’m talking about but I’ll *try* to explain.
When I was diagnosed with stage iiib lung cancer (now stage IV) I felt as though I lost my independence. I eventually stopped working full time and had even taken some time off work.
A few hospital stays and some visits by the home health nurse kept me reminded that I had lung cancer. Most recently my every 21 day trip to the hospital for infusion has kept it on my mind.
But. I have started working more hours at my job and picked up a second part time job. With my new expanded schedule I have to worry about things such as packing a lunch. I have to coordinate when I will do my adulting tasks such as going to the bank or post office. With my increase in hours at work I have also seen a bit more on the ole paycheck. Which is always nice. I am able to go shopping for what I need and not have to depend on my family for a change.
I was diagnosed April 2014. It has taken almost 5 years to get a semi normal life back. And I’m not ready to let it go! It truly is the little things.
I have never been so excited to work!
Sooooo good and (as I see it some) bad news.
First the good news! SCANS WERE STABLE! I signed the papers for this clinical trial one year ago this month. Yesterday to be exact. Next scans undetermined as of right now.
As for the bad news. I’m on my way home. What does that mean?? No infusion. She is worried about the toxicity of the clinical drug and is worried about my quality of life deteriorating. So therefore we are skipping infusion one more time. I may even be done with the trial 😰 I will know more in the coming weeks. I see Dr. Patel again on December 27th so hopefully either the neuropathy gets better or Dr. Patel has a new option for me. This is a scary point and one I have never been thru. I have never ended a treatment while it is still working! I am of course still on tarceva so I am not completely without systematic treatment.
We talked about a few options for the neuropathy. She gave me a prescription for physical therapy since I’m walking terribly. And the other was an alternative therapy (read: out of pocket) and prefaced it with a lot of “I swear I’m not crazy” kind of statements. BUT water therapy with some sort of shock therapy. Meh I’ll probably stick with the physical therapy 🤷🏼♀️
Please consider donating a few bucks to my #superbowlchallenge. I let Dr Patel know I was fundraising for U of C and she was very thankful and appreciative. Any little bit helps!
And if you have made it to the bottom of this post I am forever grateful for all the thoughts, prayers, happy juju, whatever you send my way! ❤️
Two posts in one week?!? What is this craziness. Well I had a busy medical week so a Facebook post just would not cut it.
My last post was about my blood transfusion so I will start with there. My hemoglobin today was an amazing 8.6 which is acceptable! Whoo hoo! I will go in next week for follow up labs to make sure things aren’t trending downward again.
I started my day with the ob/gyn. I had a vaginal ultrasound. I won’t go into to too much detail 😂 I met with Dr. Brooks in March and not much was done then. So today I met with Dr. Kim. She told me that she thinks the irregular bleeding (May 3rd – today) is because my body is tying to catch up from not having a period for so long. She suggested that I start a progesterone pill for a few weeks until I can talk with Dr. Brooks. I will see her in two weeks. She will either approve or suggest a different plan which is a DNC and IUD placement on July 10th.
After that I had labs and met with Dr. Patel to go over scans. Well I actually went over the scans with the fellow. She explained a bunch of “scary” wording in my report. I can’t go into detail because frankly it went over my head 🤦🏼♀️. Dr. Patel came in and we talked about the suspiciousness on my scan. There is an area that may be 1) ground glass or 2) pneumonitis. My options were to either get a bronchoscopy now or wait and scan at 4 weeks as opposed to 6 weeks. I chose to wait because I HATE bronchoscopys. I spoke with a few fellow Lung cancer ladies and they agreed with my decision. I am to watch for signs of shortness of breath, fatigue and fever.
I had my ninth infusion afterwards (hence the blog post title 😂 hey I think I’m funny!) It went smoothly until they needed blood. She tried with a butterfly in my right arm and was VERY unsuccessful. So unsuccessful that she left the needle poking out of my arm walked over to the curtain to get help and left it in for at least 4 mins (a long time considering the circumstances) and until her charge nurse got there. Then the charge tried in my left arm and was almost unsuccessful but pulled through last minute! (Enough of my rant!)
On a separate note. I went to the ER on Wednesday night (June 13th). On June 4th I stepped off the curb with my left foot. Well it buckled and my right foot did nothing to rectify the situation so I landed on the ground. My left foot oddly enough was OK. My right foot hurt a little but seemed OK. No bruising. So I thought I was in the clear. Well fast forward to Wednesday and it was still swollen and hurt a lot. So I left work early (sorry guys!) and went straight to the ER. They did a foot/ ankle scan and determined it was NOT broken. They gave my crutches (which I am no good at walking with) a splint and an ice bag. Instructions to elevate when I can, ice it and follow up with an ortho doctor.
I want to thank everyone for the well wishes and happy thoughts,… positive juju and all the good stuff! ❤️ Here are a few pictures that I mainly posted to either my Instagram feed/ instagram story / or Facebook!
(Yes. That is a pickle slushie from Sonic!)
It’s about time for a health update! I have successfully had 8 infusions of Abbv-399. This coming Thursday I will have infusion #9.
I had to have a blood transfusion (womp womp) yesterday (friday) and spent a good portion of my day at the University of Chicago. At my appointment two weeks ago my hemoglobin was 7.7 which had dropped from 11.7. So we were kind of monitoring it. Well I continued getting more tired so we called Livia (my nurse) and she wasn’t available. And apparently neither was Dr. Patel (oncologist) or Brittany Beach (physicians assistant) Soooooo we finally got a hold of Jessie Porter (physicians assistant) I have seen Jessie before but she is not assigned to my case normally. She had me come in for blood work Friday morning and my hemoglobin dropped to 6.4! Yikes! Not bad but definitely not good. I met with Jessie and then headed back over to the infusion center. They tested my blood two different ways to make sure I was getting the right blood. It took foreverrrrrr but once it was over with I felt great. Because my numbers were so low I do have to go back on Monday for a second unit of blood.
Tuesday I have my routine CT of the chest/ab/pelvis as well as a bi-annual MRI of he brain.
Thursday I will see Dr. Patel to go over results and hopefully if everything is still stable I will have infusion #9.
Thank you to everyone that has messaged me, commented, offered love and prayers. My parents are each going thru some stuff right now too. I won’t go into detail because it’s not my business to share, but keep them in your prayers too please 😊
Also, I am very grateful to he person/ people who took time out of there day to donate blood so that it was/is available to me. In my lifetime I only donated one gallon of blood before I was told I could no longer donate. I have always been an advocate for blood donation and appreciate each and every able bodied person who chooses to do so.
Here are a few pictures from my most recent adventures:
Being in the world of lung cancer I have come to terms with the fact that many of the people that I will meet, I might lose them. I have met people in person but most I know just from facebook/twitter/instagram.
Survivors guilt is real.
We share articles and quotes and words. #433aday is our hashtag. It’s true 433 people die every day on average from Lung cancer. Approximately 193 of those are women.
I have found myself in a time that I need to step back though. I’m part of two Facebook groups where there are multiple cancers represented. From Brest cancer to leukemia it’s all there.
Two people from these groups have passed away in the last two days. Which makes me think CANCER SUCKS!
Like I said, survivors guilt is real. I don’t know where I would be without my husband, sister, Mom, Dad, my nephew, friends, family, coworkers and Lung cancer sisters and brothers. I truly do have a great support system.
(Here is a picture of me drinking pickle juice 😂)
Yesterday I had my fourth infusion of Abbv-399! I have some news to share that I have not yet made public so I decided to make a blog post.
My latest scan showed shrinkage but there was a questionable spot in my Lung. Dr. Patel did not bring this up to me and I didn’t ask about it until yesterday.
I talked with the physicians assistant and well she didn’t really ease my mind. She said it could be infection but probably not. So we wait. Since I’m in a trial I have a scan already again on March 20th.
I have been having some wheezing while I lay down so that was also brought up. Jessie Porter (PA) sent me for a chest x-ray. That came back all clear! We were looking for fluid and they did not see any. Whew!
Also. I had some irregular bleeding which prompted Dr. Patel to set me up with an OB/Gyn appointment. They asked for me to have an ultrasound before my appointment so I went to that. Apparently, they were investigating a mass that has been on my ovary for a while now. We never did anything about it because it was always the same size. Because we needed to investigate the bleeding I guess they figured we should also check out the mass. Dr. A seems to think it is just a cyst but since I have a history of cancer he wants to look into it further.
I met with Dr. Brooks (OB/GYN oncologist) and we talked about the bleeding. She didn’t really give me a reason why. But wanted me to get a Pap smear with an endometrial biopsy. I got that done and let me tell you, holy uncomfortable! I will get the test results back next week Friday and we will decide from there what to do with the mass. She thinks the mass is one of three things: ovarian cancer, Lung cancer met or just a cyst. We are hoping for the third option. Fingers crossed!
Denise and I are planning our next vacation. It’s between Seattle and Ireland! Robert and I are going to Toronto in September for the IASLC conference and I am planning that. It will be a road trip so that should be fun!
Since my last update there have been a few scans, a procedure, and now a treatment change. My last update was in May of 2017. I had scans in August (chest CT and brain MRI) that came back stable and then I had scans again in November (chest CT) that showed stable in my lungs but two new inflamed lymph nodes in my abdomen. That is where the procedure comes in. I had an EGD where they went down my throat and biopsied the two lymph nodes that are conveniently located behind the stomach. I went thru the procedure with flying colors but it did come back as cancerous, which we has assumed.
This isn’t my first rodeo but that doesn’t make it any less scary. As some know I traveled to Boston for a the clinical trial (AZD9291 and AZD6094) in 2015. That trial came with many setbacks that I had not anticipated because, well, I simply was naive and had not realized that those side effects and things could happen. This go around I now know what side effects are the bad ones and what questions to potentially ask. I stayed in that clinical trial until January 2016 where I then switched to Tarceva and Cabozantinib. Which is the treatment that I was on until this November (2017).
On December 27th I will start a new clinical trial. The good news is that this one is based out of many hospitals including the University of Chicago. It is called ABBV-399 and is called a conjugate. It is an infusion but not technically chemotherapy. The biggest of the side effects is Neuropathy. I’m not thrilled about that because if I cant write then I cant work. Or at least not work easily. We will cross that bridge when it comes along I suppose. I had baseline scans (chest CT, Brain MRI, EKG, and bloodwork) done in December.
I have already completed my “wash-out” of 11.5 days. A wash-out gets the drug you were previously on completely (or at lease far enough out) out of the system. I stayed on the Tarceva because the trial arm that I am participating in is in combination with Tarceva.
The other things that have me worried are losing my hair. If it happens it happens. But id like to know ahead of time at least. I didn’t think to ask but have an email out asking for clarification.
I have also been in an “pig out” phase. I feel like I should weigh around 135lbs. at start of trial. Not sure how close I am to that but I haven’t held back. Haha. We have eaten at Blaze pizza twice now! I plan to go to Texas Roadhouse on Tuesday for a great steak dinner. This is all in anticipation that I will lose my appetite. The chances of that happening are about 5-10% according to my oncologist. BUT it has happened to me every other time I have changed treatments so I am assuming it will happen this go around as well.
I am ecstatic to have Christmas to celebrate before the whirlwind of appointments comes along. I will be going to the University of Chicago for my infusion once every other week. The first week I go three times. Once for treatment and then an additional two times for blood draws. I will also be getting frequent EKGs because they do not have any research done on how this combination effects the heart. Oh joy! And I already have an elevated heart rate.
I think that is enough for now. As always I appreciate any thoughts and prayers, good vibes, happy juju whatever you say sent my way!