Thursday, November 29, 2012

Mom's First Thoracentesis

Say that three times fast!

Today's thoracentesis went smoothly. The procedure itself only lasted about 30 minutes but there was a lot of pre-op and post-op things they did. We arrived approximate at 9:30 a.m. and had our initial check-in. Mom was given strict instructions not to eat of drink anything that morning. She was also suppose to be off her blood thinner for a day prior.

We were then taken to a separate private room which would be her recovery room once the procedure was done. They started off by getting her all situated, taking vitals, and doing blood work  They are mapped out the area where they would have to make the incision in her back to get to the chest cavity to drain the fluid. We then waited on them to come and get her to do a chest x-ray to see how much fluid had accumulated. Once that was done, they took her to the operation room. She said that they numbed the entire area of her back. Then next went in with a needed attached to a vacuum-like bag and began extracting the fluid. She said she felt a bit of discomfort at the instant they inserted the needle but it wasn't too bad. Throughout the draining, she just felt some moderate pressure in her chest. Once that was done, she was brought back to the recovery room where I was happily waiting for her. It was such an amazing site to actually see her smile. I asked her how it went and she said she felt normal and was so happy to breathe normally. The post-op nurse said there took out about 400 ml of fluid and it was sent to the lab for testing. I am hoping that the fluid is not cancer but if it is, I am ready to battle that head on too. I am not going to lose hope. The fact that she was able to breathe normally today was a little victory today and I am choosing to hold onto that.

Wednesday, November 28, 2012

Ups and Downs

The last week has been filled with ups and downs. Last week, my sister and husband were in town for Thanksgiving and it was amazing. We were all together and mom was feeling pretty good. I remember thinking that day as we all hung out watching football (after eating way too much), that I wish that I could freeze that moment of happiness. One of my best friends for over 20 years also visited for the weekend. It was a breathe of fresh air and a positive diversion that my heart needed. My mom was so happy to see her.

It's crazy how just a few days the human spirit can be crushed...For the past few days, mom's health has really been deteriorating. The main concern is she's been having some major breathing issues. I had thought that it was because her hemoglobin was low but I wasn't sure.

We had our CT scan early this morning and while she was getting that taken care of, I called the oncology clinic to fill them in on what's been going on. They were able to squeeze us in for an appt. with the nurse practitioner right after we had the scan. We took care of getting vitals and then met with the NP to figure out why mom's been feeling the way she was. Her blood results had showed that her hemoglobin, though still low (8.6), was actually a couple of a tenths better than last week. The NP called over to the hospital to see if they could tell anything from the scan. She was concerned that the blood clot had returned. Mom was hooked up to an oxygen tank to be a bit more confortable. The NP talked with the radiologist who said that the issue was not a clot but a moderate amount of fluid buildup in the lungs that's caused by the cancer. He also said that the cancer in the chest region looked more prominent..sigh.

So, tomorrow we have a thoracentesis scheduled to drain the fluid from mom's chest. Hoping the procedure goes smoothly.

Wednesday, November 14, 2012

Honing In

Today, I felt, was a very productive day. We met with Dr. A for a follow-up to discuss options going forward. We've honed in tightly on three viable options on the c-met inhibitor and I feel really good about each of them. Over the last few weeks I've been emailing Dr. A and Mayo Clinic and we've managed to subtract out a few trials from our initial list and even added added a new option today.

Option 1: Clinical Trial in Detroit
This trial seems very promising but the downside is it involves a lot of travel (1-2 times a week for the first 6 weeks). We're still trying to figure out how to do this.

Option 2: Xalkori
Xalkori is an FDA approved drug that targets tumors with C-MET and/or ALK proteins. Right now, it's only approved for lung cancer unfortunately. But it's on the market and I think it will greatly help mom since she has a high expression of the c-met protein in her tumors. The next few days, Dr. A and I are teaming up to gather as much research as we can to make a case for it with gastric cancer so mom can be prescribed the drug. He will be drafting a letter of medical necessity. Cross your fingers!

Option 3: Clinical Trial at Mayo Clinic
This is completely new and I don't have all the details yet. All I know is there's a new c-met trial at Mayo but are only letting in patients with kidney cancer. Dr. D at Mayo will see what she can do to admit mom into this trial.

So, we've made some solid progress today. It's not as fast as I'd like but it is what it is. I'm just thankful to have options at hand and the cancer is stable. Not a lot of people even get that. We went ahead with chemo today. It's now officially round 8, session 1. Mom's count was also good too which I was happy about. Her WBC was 4.7 and HGB was 9.2. A lot better than last week when they were 1.7 and 8.3, respectively.

I can't say this enough, but I am so thankful for the medical team ( I call them my rock star team) that we are working with. It's so important to have that peace of mind that they have your best interests at heart and also listen to you when you bring ideas to the table. I often wonder if Dr. A gets tired of me for pushing so much but today he shook my hand and thanked me profusely for all that I am doing. He's even mentioned me in the medical summary letters he drafts after each meeting and has complimented me as a very thoughtful and useful source. It feels good to know that what I am doing is making a difference in their eyes.

Friday, November 9, 2012

The Pioneer & The Discoverer

If you've followed my cousin's Sandra's blog, you will see that she coined her brother, Rajen as 'The Pioneer' in our family story before she passed away earlier this year. I find the title very fitting. He was the first one in the family to enter this unchartered territory of hereditary diffuse gastric cancer. During his battle with cancer, we had no idea of what the years to come after his death would bring. But he did tell us his story and all the symptoms he experienced. He taught us to observe and prepared us for what was to come.

It made me think of what Sandra's role is in all this and I think she was 'The Discoverer'. Her thirst for knowledge was a sight to see. She was perhaps the most brilliant person I've ever known and her being a scientist she yearned to find answers. She was very proactive and, because of her actions, we discovered the genetics behind the cancer.

I am so proud to be related to them and think about them often. I feel like they'd both motivated me in such a profound way. They were more than just cousins to me, they were my big brother and big sister. Their battles motivate me to follow their lead in searching for more answers. Answers that will eventually kick cancer's ass.

I wonder what my role will be in the years to come...

Thursday, November 8, 2012

Wacky Wednesday

Yesterday, I spent pretty much the whole day with mom at the clinic and hospital. She was carrying a low-grade fever for 3-4 days with occasional spikes here and there of 101. I was watching her closely, and trying really hard to break it with Tylenol but it kept lingering. It also concerned me that she had a bad cough which made her very breathless. We were scheduled to go in for our weekly labs later in the afternoon but my gut told me to call the clinic and tell them what's been happening.

I spoke with Dr. A's nurse who told me that we should come in sooner to have mom meet with the nurse practitioner to see what's going on. They said it's possible that mom could have an infection which I assumed was the case by the persistent fever. I pretty much dropped everything I was doing at work and went to take her to the clinic. Once we arrived and met with the NP, she examined mom's chest and heard mom's left side of her lung was a bit quieter. The NP said she'd like us to do a chest x-ray because it might be early forms of pneumonia and if it was it would mean mom would have to get admitted in the hospital.

But before that, we were whisked away to one of those sterile isolation rooms that I've only seen in the movies. Since mom's counts were borderline low (WBC 1.7), they did not want to risk her catching an infection. She was given a slew of medications via infusions to control her fever, nausea, dehydration and some potent anti-biotics in case that there was an infection. It took about three hours. After that, she started to feel a bit better. We then rushed over to the hospital to make our chest xray appt.  By the time, we got home, I noticed mom was feeling the worlds better. Her once consistent fever at 100.0 was now back to 98s. Yay meds! Now all I hoped for was her chest xray results to be ok.

Update 11/8/12 : Got a call from the NP today and mom's chest xray is ok. She said there doesn't seem to be a serious concern. Mom's chest has some liquid in it and we'd monitor it for now.

It's all this was unfolding yesterday I really wasn't phased at all. I remember months ago when things on the fly would happen, I'd kinda freak out and get anxiety. But I've noticed recently, I just deal with it. The good, the bad..all of it.  It doesn't affect me like it once did.  When I get bad news, though disappointing, I don't get so emotional vested anymore. I just take the next steps I need to.

Tuesday, November 6, 2012

Six Months

Sunday (November 4th) was the six month mark of mom being diagnosed. It's hard to believe it's already been six months because it just blew by. A friend told me awhile ago that I pretty much had a crash course in cancer with all that has happened. I couldn't agree more. Six months ago, I had no idea about port placements, laparoscopies, c-met inhibitors, EOX regime, irinotecan, docetaxel, lovenox, ativan, fentayl patches, aranesp, zofran, neulasta, TPN, HER2, emend, oncogenes, managing WBC AND HGB levels....etc.

I am trying to figure out what else I could have done better. Would I have done anything differently? What can I do better going forward?  The answer...I just don't know, in fact I have no clue. Up to this point, I've pretty much equipped myself with as much knowledge as I possibly can and always gone with my gut. I took one day at a time and never got too ahead of what I was dealing with. It's gotten me this far and overall I think I've managed to get by ok.

I've gathered a few tips for new caregivers. Some are things I just find myself doing..some are really no-brainers. I know there are lots more things too but these are the most common things.

  • Always have at least half a tank of gas in your car at all times for the many appointments you will be going to and sometimes emergency trips you need to take
  • Have a hospital overnight bag with personal items in case the patient needs to get admitted asap (it saves you a trip and lets you not leave them alone in the hospital)
  • Have fully charged phone AND take phone charger with you
  • Have a stash of quarters for metered-parking
  • Bring entertainment for you for longer appointments, infusions etc. (I was grateful for my iPad)
  • Always have kleenex, barf bags, bottled water, blanket, hand sanitizer on hand or in your car
  • Keep a well organized binder of all medical info. (appt. schedule, scan results, pathology, business cards, insurance, legal docs etc.)
  • Have Power of Attorney and Health Care Directive in place
  • Have relevant phone numbers programmed in your phone (doctor, pharmacy, nurse, home care vendor etc)
  • Keep broths, soups, and liquid energy drinks on hand (Ensure, Scandishakes, coconut water etc.) and always be on the lookout for higher calorie options
  • Juice juice juice! If the patient tolerates it try to juice fruits and veggies
  • Invest in a good digital thermometer and have Tylenol on hand to track and manage fevers.

Monday, November 5, 2012

NSFC Walk 2012

On Saturday, November 3rd I participated in a global walk sponsored by No Stomach for Cancer to raise awareness for stomach cancer. The walk was aimed at unifying all of our shared experiences and our passion for the stomach cancer cause. And so all around the country and the world, we gathered into small walking groups to support each other, give each other comfort, and inspire others.  I walked for my cousins who I've lost and for my mom who continues to fight.

I also learned of another family here in Minnesota who has HDGC. It was a somewhat calming feeling knowing that the people walking beside you shared similar experiences. You weren't alone. It was truly a special day.