Scan results show a mixed response

We got my mom's scan results back. After 3 months of irinotecan alone, my mom's scan shows "mixed response"..some nodes disappeared, some grew, and a few new ones popped up. Dr is going to add Carboplatin in addition to Irinotecan (cycle is once every 21 days, so it'll happen in July since she just got irinotecan this Monday).

In the mean time, Dr, as will me and my brother, will look at trials that may be promising. Dr said to also look at phase 1 clinical trials (the only type she'll most likely qualify for since she's gone through second line, third line chemos).

I'm hopeful that the added drug will aid in shrinking the rest of the disease. More later, just feeling down/numb at the moment. I know it could have been worse and I will continue to have hope.

No one loses "the battle" to cancer

Naturally, when you're entering an uphill battle, you fight, you kick ass, you give it all you've got, and in the context of cancer, you never lose.

Yesterday, I stumbled upon a post on the Canswear facebook page about winning and losing when you're talking about fighting this disease, which I completely resonated with:

It isn't winning if you get remission or losing if you die. It is that you have given it your all in this fight and you are a winner for even having stepped into the battle arena, treatments are hell and you are walking through it with grit and determination that you never knew you had till now! Remission is not a win, because in this game a new cancer or reoccurrence is always waiting in the wings to jump back into the game!!

 Another commented on that post, a comment that I wholeheartedly agree with:

I agree 110% - winning isn't whether you live or die, but instead *how* you live. I don't think anyone should ever say someone "lost" their battle with cancer -- that makes me mad when I hear that.

If you know someone who died and had cancer, please don't say they lost.

Scan. Wait. React. Rinse and Repeat.

When you're diagnosed with advanced cancer, you get scanned every 3 months to find out the state of the disease...whether things are spreading, shrinking, stable or unchanged. And every time, it's just as nerve wracking. A few days ago, my mom started having shooting pain when she took a deep gulp or burped. She'd put her hand to where her stomach is. The worse is seeing your mom have pain or discomfort. It's a reminder of disease, of what it could or could not be, another tight, relentless squeeze in your heart.

PET/CT scan scheduled tomorrow, June 26 at 8:15am. Appointment with Dr is the following day, June 27 at 10am. And then we take it from there.

Just praying with all my heart, the new chemo is working, nodes are shrinking, vanishing, blasted into oblivion, and the pain...that's it's something else- pain from tumor shrinking, heartburn, hernia, anything but disease progression. If you've stumbled upon this blog, please send positive vibes our way. My mom's name is Nora.

Don't tell the cops I drugged mom

Sometimes my mom's lack of appetite is so strong that nothing the doctors prescribe help in getting her to eat. We've given her Megace/ Megestrol, an appetite stimulant, but the effects weren't super obvious and I really didn't know if it kicked in. Well, I decided to try marijuana one weekend. I cooked it with butter, spread the weed butter on some corn muffins and offered it to her. It was a really funny scene...offering the muffin to her and waiting for any kind of reaction, seeing whether she'll get the munchies or act funny or extremely mellow. As a proud graduate of the fifth grade DARE program, I have never used weed in my life. In fact, the most common exposure I have had to marijuana is from movies like Pineapple Express and Super Bad. Never expected that at the ripe old age of 27, my encounter with weed would be in the context of cancer.

Medicinal marijuana was legalized in New Jersey two and a half years ago, but plans to allow dispensaries to set up shop have only been very recent. In fact, there are plans for a dispensary in Montclair to open in August. The other location is Egg Harbor Township. There have been many obstacles to making medicinal marijuana accessible.

First,

Gov. Chris Christie's administration held up its implementation while evaluating the law amid increasing pushback from federal authorities. Federal law bans the possession and sale of marijuana, and the Obama administration has taken a hardened stance against commercial enterprises growing medical pot.
New Jersey decided to proceed in July 2010, but the state Department of Health and Senior Services took time to develop a highly regulated system that it said was necessary to safeguard against theft and fraud.

(http://online.wsj.com/article/SB10001424052702304070304577398521324191292.html)

Then it was fear from communities with the "there goes the neighborhood" mentality, preventing dispensaries from opening in their towns. Their fear is unreasonable because of the regulations put in place.

Of all states with a medicinal marijuana program, New Jersey’s is among the most restricted and highly regulated.

The list of chronic ailments that qualify patients for a medicinal marijuana recommendation is short, and includes cancer, multiple sclerosis, muscular dystrophy, seizure disorders and Crohn’s disease. A recommendation can only be issued by a doctor who has registered with the state’s physician database.

Registered physicians must have an on-going relationship with patients before issuing recommendations, and must enter patients’ names, addresses, dates of birth and qualifying conditions into a secure online database.

As a part of the registration process, patients will also be required to submit a photo and obtain an identification card which lists the dispensary where they will procure their medicine.  (http://www.nj.com/cumberland/index.ssf/2012/04/nj_moving_forward_on_medicinal.html)

I'm glad that now it's finally happening and happening soon. It's opening in Montclair and Egg Harbor Township, two towns that can't be farther from where I live. Even if this law was not put in place, it just goes to show how super easy it is to get marijuana.

Tofu with ground beef and mushrooms (non spicy Ma Po Tofu)

Tofu with ground beef and mushrooms (like Ma Po Tofu but non spicy)

Made this last week. My mom ate most of the tofu and mushrooms while I ate the meat. Turned out pretty good. Here's my recipe (adapted from this recipe):

Ingredients:
1 box of silkened tofu
1 large garlic clove
2 green onions
2/3 cup chicken stock
3 tbsp vegetable oil
3 tbsp sesame oil
3 tbsp soy sauce
1 tbsp sugar
1/2 lb. ground beef (I got organic grass fed version from Trader Joe's)
1/2 tsp salt
1 tsp black bean and garlic paste
1 tbsp water mixed with 1/2 tbsp cornstarch

Directions:

1. First, slice the tofu parallel to the table into thirds so that there are 3 "slices" of tofu. Then cut 3 rows horizontal and vertical. Let it sit in a bowl to drain excess water.

2. Marinate the beef for at least 30 minutes by add sesame oil, soy sauce, and sugar and mix well.

3. Peel and mince the garlic. Cur the green onions in half lengthwise and slice diagonally into 1/2 inch sections. Heat the stock until it is just starting to boil.

4. Add olive oil to a pan and when it begins to smoke, gently add the tofu. This will make it slightly more firm. Then leave it in a bowl and set aside.

5. After clearing the tofu from the pan, once again, add oil and when oil begins to smoke, add garlic and ground beef. Stir fry vigorously until browned. Add salt and stir. Turn down the heat and add black bean and garlic paste.

6. Add the hot stock and tofu to the meat. Simmer for 4 minutes, stirring occasionally. Add green onions. Finally, stir in cornstarch mixture and boil until sauce is thickened.

Some positive news we hope

 

Got a call from my brother who was with my mom at dr's appointment/ chemo session. CEA went from 11 to 5! I used to think that my mom's CEA level was not indicative on disease progression/ reduction, but I no longer feel that way. When she was on her previous chemo, her CEA level spiked and as it turned out, the drug had no effect on her disease. Hopefully, this means it's working now. The doctor is reducing the dosage however because she does not want her to land in the hospital again due to low WBC counts. I know we are all in the tough fight, and want to share this good news.

My mom has been feeling very tired and sometimes just miserable. She's in bed half of the day, and when she came home from chemo today, she went directly to the toilet to puke. I'm hoping she can have some break in treatment soon because it's really wearing her out.

You know you're a caregiver when...

• You get excited when your loved one makes a bowel movement
• You feel enormous satisfaction when your loved one is eating and cleans the plate without throwing up
• The stuff that used to gross you out like vomit, poop, or blood doesn't phase you anymore
• TMI is no longer in your vocabulary
• You no longer define "Mets" as the name of a baseball team, and "Ned," no longer as Homer Simpson's neighbor
• You give an automatic eye roll whenever you overhear someone complaining about job, relationship, birthday stress...as the worse thing that's happened in their life
• You'd be rich if you got a quarter each time someone told you how strong you were
• social life? what social life?
• You know to warn the nurse that she only has 2 tries to get the needle in
• You spend countless hours perusing the internet for items to help deal/ combat side effects of treatment (wigs, protein shakes, supplements,etc.).
• You forget if you've showered today
• You constantly tell or show your loved one how much you love him or her
• Your nights out or "time for yourself" revolves around your loved one's doctor's appointments, scans, and if you can get someone to "babysit."
• You have the name of the disease on your Google alerts, so that if there are any novel treatments, you're the first to know
• Going to a caregiver support group is considered "treating yourself"
• You've become a pro at giving the best foot massages
• You've unleashed your cancer rage at the annoying telemarketer phone guy who apparently doesn't care that you're on the no call list
• Running errands helps you feel normal
• You've figured out how to silence the beeping machine, if only for a few minutes
• When you run into another caregiver, it's like you guys are speaking in tongues
• Your exhausted and tired, but you can't imagine anyone else doing this instead of you
• You know that before there was Brangelina or Bennifer or Speidi, there was EOX, Folfox, Folfiri, ECX, DCF...and other names smushed together to create chemo cocktails
• Their nap time is your nap time....
  You have the softest hands in town from all the lotions you applied..
• You know that "5FU" is not a dirty word
• You feel like smacking the next person who says "Boy, you really look tired" (but you have no energy to even if you could).
  You make life and death decisions with a snap of your fingers but you need 30 minutes to select an item from a dinner menu.
  You can rattle of the generic and brand names of medications and the family they belong to quicker than the nurse.
  Going to the grocery store feels like a mini-vacation.
  
  
  *from caregiver board on csn.cancer.org)

As a caregiver, people always stress that it's important to take care of yourself even though it's not always easy. Here's a "Self-Care Inventory" Check List. I have yet to rate myself, but it can be helpful in evaluating your strengths while looking at making positive changes in the lower scored areas.