Chemo Bad. Chocolate Shake Good.

In true form, Mom rocked the chemo today! She chewed it up and spit it out. No big deal.

The infusion was only an hour, and unlike the previous chemo drugs she'd received, she didn't require tons of hydration before or after. They'd done that last time to make sure her kidney was well flushed, but thankfully this chemo is far less toxic to the kidneys ("nephrotoxic" if you want to impress you friends).

She also popped the test drug today. We have no idea if it's the drug or a placebo, but we did a little "please work" dance anyway.

After the infusion her blood pressure was through the roof. Enter the chocolate shake, which after imbibing and resting for an hour, her blood pressure was well on its way to normal. I might be a genius.

So now she's snuggled in bed with tylenol PM on board. Gwennie and I are bonding on the couches, and by bonding, I means she's on her computer and I'm on my computer and we're chatting via facebook. Gotta love technology and how it brings us all closer together.

Next step, she'll continue to take the pill daily, in 8 days she'll have a follow up EKG which measures heart conduction, and in 21 days from today, she'll be back at Dana Farber for cycle 2! I'll be sure to let you all know how she's doing. 

Thank you again for all the love ~

Monday = Day 1

Just wanted to post a quick note, although there is not much to report. Mom is hanging in there, slow and steady. She was in close contact with her entire team this week, both at Dana Farber and St. Francis, and has been given the green light to start the trial on Monday here in Boston. First they'll run some diagnostic tests, take some images, and then start chemo. Fortunately I live just miles from Dana Farber, so she, Gwennie, and I will head back to my place for the night just to make sure she tolerates it well, then they'll return to Connecticut Tuesday morning.

Her primary issues as of late are the overall discomfort from the blocked lymphatic flow (remember, cheerios on a string), and very low potassium. They attempted an IV infusion of potassium last week, which did not go over well, to say the least. Mom nearly jumped out of her skin with pain and palpitations, and a not-so-nice nurse (remember Howard? worse...) did not take her very seriously. Judy showed up shortly there after and regulated, thank goodness. So now Mom is on daily potassium supplements, and hopefully with the initiation of chemo, this diffuse feeling of engorgement will go down.

If I had a dollar for every time someone said to me, "I don't know how you do it!" I would be a very wealthy little lady. I never know quite how to respond to comments such as these. I don't know how any of us deal with adversity, we just do. Every day, we are faced with hardship, and with each challenge, we have a choice in how we respond. Personally, I just look at the kids I take care of, or my mother. This isn't happening to me, this is happening to her, and if she can handle this with grace and beauty, you best believe I'm going to try and do the same.

Where she gets her strength, that's a whole other story! It's from all of you. E (my second mother) making phone calls, Coco offering suggestions, Joy giving up rides, Marilyn (my other second mother) dropping off chinese food, and Claudia's pears. The list goes on and on and on. It brought tears to my eyes this morning when my mother said to me, "if I die to today, I will die so happy and blessed." Ain't it the truth.

That's an Affirmative on the Clinical Trial

Yesterday's appointment at DFCI was productive indeed, and they had us in and out in record time. Perhaps because Dr. Choueiri (I think I spell his name differently each post) was within hours of becoming a first time dad and it was like dealing with someone on speed. It was quite endearing actually.

So this clinical trial- it's Dr. C's baby- he's the principal investigator and the one who will also follow Mom. So far they have 70 participants out of a desired 140. It is for patients with recurrent metastatic TCC that currently have measurable disease that can be quantified. In other words, they can easily track if tumors are getting bigger or smaller. She will receive IV (intravenous) chemotherapy once every 21 days (each cycle is 21 days) at DFCI, during which she'll also have a quick check up and blood drawn. Additionally she will take a pill every day, which is either the test drug or a placebo. The drug being tested ideally isolates the cancer cells and keeps them from growing and spreading. The positive thing is that the chemo given in the study is the same chemo she'd get if she didn't do the study. So it's a win win! She will have a CAT scan every 6 weeks to check the status of the tumor size. If it is the same size or shrinking, they'll continue as planned. If the tumor grows or changes, they'll open up one of the pills Mom's to take daily to find out if it is the placebo or test drug. If she is not on the test drug, they put her on it and see if that makes a difference.

A bit confusing, but it's all very closely regulated and monitored because it is a clinical study that hopefully will benefit Mom, but also cancer treatment in the future. We met the entire team, including the researcher and one of the nurse's who will be following Mom closely. The atmosphere was very positive and we were laughing so loud in the office, people were poking their head in to see what we were up to!

Next week they'll dedicate to ensuring that Mom meets all qualifying standards, then she should be able to start the week after.

The Results Are In

We are disappointed because it appears that Mom's cancer has returned. The biopsy they took from the enlarged area/tumor above her left clavicle shows evidence of transitional cell carcinoma (TCC) which we first saw in her ureter way back in November 2007, then again November 2008 in her ovary.

What continues to be so unusual and unpredictable about this cancer is that it travels in patterns her doctors could have never predicted. Dr. Donadio said today that she was actually surprised not to have seen any evidence of cancer in her lungs, since that is a more likely place for cancer to spread, but rather it's tucked itself nicely below her neck. It is not confined to an organ as it had been before in her bladder, ureter, and ovary, therefor surgical removal is not indicated. There would be no "margins" to measure, and the risk of surgery again versus reward simply does not match up.

The pathology reports were inconclusive as to whether this cancer is in the surrounding lymph nodes, but it's likely that the cells have been traveling through the lymph system the whole time, we just don't know why they plant themselves where they do. The subsequent swelling she's experienced in her neck, arm pits, and breasts, is a direct result of this mass blocking the surrounding lymphatic flow. It's a lot like a traffic jam. All the hasty little lymph cells dying to get to Target before it closes, but some idiot (the tumor) is trying to take a left hand turn across three lanes of traffic. 

There are not a lot of options for third line (meaning this is our third attempt at beating the same cancer) treatments for metastatic TCC. After discussing the options presented, Mom's decided to go back to Dana Farber Cancer Institute to learn about a clinical trial being run there for patients with metastatic TCC that have failed prior treatments. Our appointment is tomorrow at 3pm with Dr. Chouieri who we've seen twice before for second opinions. When we last saw him in November, he stressed that if measurable disease returned, that Mom should call him right away.

I fancy myself a perpetual optimist, and want nothing more than for this clinical trial to once and for all teach this cancer a lesson, however the clinician in me coupled with what Dr. Donadio said to us today, realizes that Mom is now living with cancer. Chance for a cure after a third recurrence is very rare, but certainly, not impossible.

Mom is understandably overwhelmed by the vast unknown ahead of her. She has a lot to think about right now, but I'm happy to report that as I type, she's gone to just close her eyes and nap for a bit. She handled today like the model patient she has been all along, identifying every staff member by name and greeting them with a hug and a smile.

I'll update tomorrow after we've seen the team at DFCI. Until then, thank you for everything, especially to Marilyn for delivering dinner on the porch for us to come home to, and to Joy for doing the same on Monday. Mom has built an incredible network of people around her.

Home Safe and Sound

Mom got home a little before noon. She's been groggy and sleepy all afternoon, but in relatively good spirits besides being understandably anxious to get the results. Gwennie's on her way home from Montreal as I type, so that's adding light to her voice.

Will post as soon as the results are in on Thursday!

Back in the Saddle

I can hardly believe I haven't posted since February! Sorry to those inquiring minds. As always, no news has been good news. Mom has been fit as a fiddle. She continues to eat very well, practice her chi gong exercises and meditation daily, and even managed to spend two weeks in Florida with her father in March.

Two days before returning home she started experiencing significant difficulty maintaining balance, dizziness, and nausea. A CT scan done at the local ER ruled out anything worrisome, and she was diagnosed with a viral inner ear infection, which explains her symptoms because if our inner ears are inflamed, our balance tends to be significantly altered. She was given medication to help with the vertigo and nausea, but it made her feel so drowsy she only ended up taking it once.

A month later, she is still battling some residual effects from the infection. Of late, she's noticed some tenderness and discomfort under her arms to her outer breasts. My initial reaction was that this might be a side effect of the hysterectomy; her hormones are probably out of whack. But the tenderness persisted and she went to see Dr. Nelson (our one-and-only-bestest GYN oncologist) this past Friday. She also checked in with Dr. Donadio (her primary oncologist) because she has some pronounced sites of swelling/lumps in her supraclavicular area (that's the little divot about the collar bone) and some around her breasts.

So who knows. Dr. Nelson and Dr. Donadio were stumped, and we all know Mom likes to give them a run for their money. She had a CT scan done of her neck, chest, and abdomen that was inconclusive. Given that she had this significant infection that she's still recovering from, her immune system might be on over-drive. Think of your lymph system as a long string running along your blood stream with little cheerios dispersed along the way. Plasma travels along that string then those little cheerios suck out any infectious material along the way. Those lymph nodes in close proximity might have just gotten plumb tuckered out and backed up a bit, causing the swelling.

Naturally, because of how unusual Mom's cancer has spread and presented, there is also a possibility that these lymph nodes could be indicative of a more serious issue, or that the lump in her breast is cancerous. These are a few possibilities, and as of now her team is uncertain what the most likely diagnosis could be.

The plan is to biopsy the sites on Monday bright and early. It will be a relatively quick (roughly 3 hour) procedure where using a camera and a needle, they suck out some of the fluid from these questionable areas. It'll then take anywhere between 48 and 72 hours for pathology results to be given to us. Wednesday or Thursday we should know what we're up against.

As you can imagine, it was a rough few days for Mom. As she put it, she went to a very dark place after learning that this could be cancer. In true form, she woke up this morning, chi-gonged, meditated, manged a healthy breakfast, and was off to the theatre tonight when I last spoke to her. Her M.O. remains the same: pray for the best, prepare for the worst.

I'm heading home tomorrow evening so I can accompany her to the biopsy appointment, and with any luck I can re-work my schedule to be with her when the results come in. As always, I'll post as soon as I hear anything.

So ramp up the good vibe-sending again!