Hard Act to Follow? Pa-Lease!

I will try to keep the on-line love fest to a minimum, but I would be lying if I said I did not shed a little tear after reading Gwennie's post. I knew the woman was capable, but that post was written like a true, dare I say, nurse! And as for the praise, all I can say is it takes a village. Thank you for the recognition, but it goes without saying that I am not doing this alone, and it is only because of the support we have around us that we're able to tackle these daily challenges.

But seriously, stay tuned for more posts from Gwennie. Girlfriend has skill.

I'm back from camping/swimming in Vermont (that teeny yellow dot is a tent). Big thanks to Gwennie for taking over, and Lissa for spending an overnight at the hospital with Mom on Sunday night. I keep hearing people tell me to make sure I'm taking care of myself, so I assure you, I FORCED myself to sit by the campfire (rain or shine) and drink beers and eat s'mores. Have no fear, Nurse Monica is rested and here. It is nice to be back at Mom's bedside, especially considering the new developments.

For the last 24 hours she's been experiencing some numbness and tingling in both of her feet, likely a side effect of the neurological impact this cancer is having. They've just done an MRI tonight of her spine to look for nerve damage, and we should have those results back tomorrow morning.

Nutrition continues to be a major challenge as well. There's only a limited variety of "nectar-thick" delectable for one to choose from (and hospital issue vanilla custard is not one of them). We're making due, trying different things (Marilyn D. your broth was a HIT), and I'm looking forward to seeing if I can puree things to the right consistency.

Signing off for the night, will post tomorrow with results.

We're changing it up!

Since Monica has been an energizer bunny/star daughter for a few straight weeks now, she has taken the weekend to go camping on our Vermont property to ponder what will become of it in the future (some might call it staking out the driveway...). The nerve. Ergo, I (Gwennie, the younger daughter) have been given the honor of updating the notorious blog! Though I'm pretty sure I could win a spelling contest against Monica, the field of medicine is definitely her domain. So bare with me.

Mom found out today that she's stuck in the hospital for (at the very least) the weekend. As you've already read, her people at St. Francis were concerned upon hearing about Mom's swallowing troubles. So, since being admitted, she's been bombarded with mini cameras being shoved down her nose (no lie) and Barium swallows. Barium swallows are tests in which mom has to swallow this nasty, chalky liquid that shows up on x-rays. In this case, it was a speech pathologist who took pictures of Mom swallowing to follow the path the liquid takes and where it's getting held up. The results: mom's tumor on the left side of her throat is starting to inhibit the nerves that control her left vocal chord, hence the reason her voice has changed. What they also found out is that her epiglottis, a flap of cartilage that essentially prevents food from going into her lungs (thank you, Wikipedia), is not fully covering her trachea (i.e. her breathing tube) when she swallows. This causes food and liquid to actually go into mom's lungs (also known as "aspiration"). That, as you can probably guess, is bad.

So for now, Mom is on a full liquid diet. And it doesn't end there. Everything that goes down her throat must be a certain viscosity (dubbed "nectar-thick") and swallowing is now an intricate 4-step process. Talk about strict diets. (Sidenote: all of you Helping Hands volunteers who have so eagerly volunteered their culinary delights, never fear! Mom will hopefully be eating solids again soon and, frankly, Monica and I welcome the idea of not having to cook, even when it's just for us!)

Mom is still receiving chemotherapy through multiple venues, and her doctors are now entertaining the idea of radiation to her neck, and maybe to her head and spine as well. The idea is that it will significantly lessen the pressure that the tumor in her neck is applying to her vocal chords and therefore allow everything to function normally once again. You'll know when we know.

Finally, since my 15 minutes are, well, only 15 minutes, I'd like to take the opportunity to thank everyone who has been so caring and thoughtful and HELPFUL to me, my sister, and my mom. I can't even believe how many people I had never met or met maybe once before have said "call me, day or night, if you need ANYTHING". And, of course, the friends and family that I have known and trusted for years who have also offered endless support have been no less than godly. So thank you everyone.

And FINALLY finally (I'm almost done, I promise), I have to thank my sister. There is no telling what my mom would do without her, and the same goes for me. She has probably had it the hardest in the past couple of years and yet has had no choice but to be the strongest. Even still, she's handled it beautifully. She's my personal hero and the rock in my family. So Monica, thank you a million, and if karma exists, there is a yacht coming your way.

Brief Stay at St. Franny's

Mom was supposed to take a quick drive from the spa to St. Francis for her Neulasta injection Wednesday, but alas they kept her overnight for observation after learning about her swallowing issues. They were concerned (rightfully so) that something was occluding her upper airway (or trachea, if you want to get technical).

A CT scan of her neck was negative for any notable growth (huge phew), and she passed her Barium Swallow Test with flying colors, so there is no risk for her aspirating foods in to her lungs or choking. The discomfort is most likely due to a thrush infection in her throat, which is a common side effect in people taking immunosuppressant medications or long term antibiotics. There is also notable swelling of the lymph nodes around her left clavicle. This is where they've been watching a mass for some time, and there is some concern that these enlarged lymph nodes are making it uncomfortable for her to swallow.

So the plan of attack is she was kept overnight Wednesday and Thursday, today they'll administer intrathecal chemo in her Ommaya Port and add another drug to that cocktail. We'll continue to monitor her symptoms closely, and if she isn't feeling better in a few days, they may try radiation to that area on her brain/spine/neck to reduce that mass and make her more comfortable.

Meanwhile, Gwennie and I were trapped at the spa (oh the horror) on Wednesday night, only to be rescued by our friend E Thursday morning and returned to St. Franny's. It all got very complicated, so Dad felt it necessary to give a power point presentation on how we'd all be returned to our respective places of living.

We're looking SO forward to our Helping Hands meals which start Monday, and cannot believe how many people have jumped at the opportunity step up and fill our bellies. Thank you thank you THANK YOU!

Automated Reply: Away at The Spa, Excuse Me Very Much

Monday and Tuesday were spent largely at the Cancer Center. She received two systemic chemo drugs Monday along with lots and lots of hydration to keep Lil' Lefty (the lone kidney) hydrated and flushed, and Tuesday she got the remaining two systemic chemo drugs, as well as the intrathecal chemo.

Today was just a quick trip to the hospital for an injection of Neulasta, which you may remember from before is a drug meant to inspire her bone marrow to create more white blood cells since all this chemo is really depleting her immune system.

In the meantime, my dad is visiting from Texas, and has whisked away Gwennie, Mom, and

myself to the Spa at Norwich Inn for two nights. It's not too far from the hospital, but adds a little change of pace and scenery. I think Dad may have had this idea that Mom would soak up some serious spa treatments, but so far all she's soaking up are naps in the tempurpedic bed. She woke up long enough to eat rib eye for dinner followed by a molten chocolate cake with vanilla ice cream. Excellent sign.

View from dinner on the deck, The Spa at Norwich Inn

The good news that has come with all these new chemotherapeutics is that the cancerous cell count in the cerebral spinal fluid has significantly decreased, but frustratingly so, her symptoms have not improved. Her fatigue is extreme, and the dizziness has morphed in to double and triple vision. Her taste is all over the map, and she struggles to differentiate a lot of sounds in the room. A new development in the last 48 hours or so is that she has difficulty swallowing. She feels like there is "something there" in her throat and coughs or clears a lot after eating and throughout the night. We're not sure if there is an actual obstruction in her throat, or if this is something neurological, meaning the cancer in her brain has somehow impacted the nerves that control swallowing.

Right now we're in a cycle of "watch and wait," to ensure that all these treatments she is undergoing in fact increase her function and quality of life. If her symptoms persist and she is not feeling better, there are a few other things the team has mentioned to make her more comfortable, but we will cross that bridge when we get there.

Although she sleeps the better part of the day, when she's awake, she really does enjoy visits, a little TV, trying to meditate and tasty food. We're all acutely aware that this cancer will be nearly impossible to beat, but for now she is happy, pain-free, and surrounded by friends, family, and her two obnoxious daughters:

Visits are certainly welcome, just as long as you don't mind if Mom sleeps through part (or all) of it. Call the house (860-675-5991) or my mobile (860-748-7904) to let us know you're stopping by.

And for all the cooks dying to show off your culinary talents, you're in luck. I'm done. I'm spent. I've had it with the kitchen. I am relenting to ask for help! I'll be in touch with Susan Eastman, Helping Hands guru to start coordinating another killer meal chain similar to last winter.

We're back in town tomorrow afternoon, rested and "slimy" as my uncle put it.

I'm a Slacker

Well, when it comes to blogging, yes. But rest assured, my lack of posts is secondary only to my very important business at home (shopping for pajamas, cleaning out mom's closet, scheduling her mini holidays, making shrimp scampi, etc). I simply haven't had a free second!

But we're moving along famously. A quick re-cap of the past week:

Thursday she had the Ommaya Port placed, no issues. Friday was her first treatment of Methotrexate in the Ommaya, which was far from issue free. I'd flown the coop late Thursday night, but Mom's baby sister Stephanie was by her side giving me play-by-plays of how things went down. The treatment itself is very quick. A small needle is inserted in to the port, three ml's of cerebral spinal fluid are pulled out, then three ml's of chemo are put in. Et voila. But shortly after the treatment, Mom felt flushed, dizzy, nauseated, like she was losing control. Apparently this isn't an all together unusual adverse reaction, so since then she's been well pre-medicated with steroids, anti-nausea, and anti-histamine drugs to prevent similar reactions.

She was discharged Saturday to a home full of family, which made her endlessly happy. Tuesday she had her second Methotrexate treatment in the Ommaya with some issues, but not as severe as the first time, and today, we're back again, for treatment number 3 in the Oh-Oh-Mmaya.

Otherwise the week has been filled with visitors, phone calls, emails, cooking, naps, and slave labor. I mean... perhaps that is a little harsh, but anyone who knows my mother knows she's a fan of the "list," and our house is never without multiple "lists" just floating around waiting for someone to cross things off. So Gwennie and I have been tackling lists like it is nobody's business, getting things in order, and hopefully alleviating things from Mom's plate.

The new development in Mom's treatment plan is that we are introducing a new regimen of chemotherapuetics to her system because some of the cancer in her lymph nodes that originally got her on the clinical trial and Dana Farber has returned. We know this purely by looking and touch. We were presented with several options today after Dana Farber and St. Francis had communicated with one another, and we've decided to go aggressive. This treatment will involved her getting 4 different chemo drugs over the course of three consecutive days. The side effects will be more pronounced (nausea, fatigue, loss of appetite), however, the idea is that with proper management of these side effects, she'll actually be more comfortable and maybe this persist ant dizziness will subside.

Sounds backwards, I understand, but as of now Mom is unable to walk without a walker. The idea is that if we hit this cancer "locally," meaning right into the cerebral spinal fluid, as well as "systemically," meaning into the blood stream, we have a better shot and suppressing the cancer growth and the associated negative side effects (dizziness).

Overall, Mom's spirits are excellent, but her energy is limited. She's had a few visitors this past week which she has loved, but it is certainly best for her when they're spread out, so thank you to her wonderful and patient friends that haven't been able to stop by yet. Soon enough, I promise!

New treatment begins Monday for three consecutive days, and I'll be sitting a LOT, so expect and update then.

Have a lovely weekend!

We Have Lift Off

Mom did beautifully yesterday. Surgery went off without a hitch, and she now is the proud new owner of an Ommaya Port.

On Wednesday afternoon she also had a second lumbar puncture (LP) so they could administer another dose of chemotherapy. Today will be the inagural dose of chemo via the Ommaya. Once that is finished, she'll be monitored for a few hours, then discharged home!

Her pain seems well controlled with a patch she's been wearing on the skin, and 2-3 times a day she requires heavier medications for breakthrough pain. Her nausea hasn't been an issues since admission, her weakness persists, but a physical therapist will be seeing her at home as needed.

Even Gwennie is feeling a little better. Things are looking up!

I'm back to Boston for the weekend to work Saturday and Sunday, but will return Monday. In the meantime, Mom is expecting many siblings and visitors to be coming by at home and I know she's looking so forward to that.

A Quiet Day of Rest

We found out bright and early that the Ommaya port will not be placed until tomorrow mid-morning/early afternoon, so today is an "off day." She has a wonderful nurse today who's put up a big "do not disturb" sign on the door, and Mom and I are just sitting, talking, planning, brainstorming, crying, laughing, eating, and absorbing. Well right now she's snoring, I'm typing.

It is a lot to take in, and there is much to discuss. If there is anything to report, I will post away, otherwise you can count on hearing from me when Mom is safely out of surgery tomorrow.

Keep the prayers coming, and if you're seriously desperate to wait on a patient, go visit Gwennie at home. Poor thing laid up in bed watching TBS moving marathons :(

New Port, New Chemo, New Surgery, OH MY!

Or "Ommaya!"

That was a really bad joke, but seriously, I've been on a steady diet of iced coffee and oatmeal raisin cookies from Au Bon Pain. What do you want?

Dr. Donadio stopped back in this afternoon with one of the cancer center nurse practitioners, Allison, to let us know that it is looking very likely that the cells detected in the cerebral spinal fluid from yesterday's LP are positive for transitional cell carcinoma, which is the cancer cell type we've been seeing all along. This in turn has caused meningeal carcinomatosis, which is the inflammation of the meninges discussed in the previous two posts. None of this is a huge surprise based on the fact that Dana Farber was fairly certain of this diagnosis from last week's MRI's. Regardless, it is affirming suspicions and our fear that the cancer has spread to the tissue surrounding the spinal cord and brain.

Tomorrow or Thursday, she will have what is called an Ommaya Port placed in her skull. Sounds really dramatic, I know, but it is essentially the exact same thing as the port she had placed a little over a month ago, except this port will directly access her spinal fluid instead of her blood stream. Through this port, spinal fluid can very easily be removed, and Methotrexate (her new chemo cocktail du jour) instilled. She'll have treatments 2-3 times per week right in the office at the St. Franny Cancer Center, and they'll check the spinal fluid regularly to make sure the cancer cell count is decreasing, meaning the treatment is effective and therapeutic.

As we see the cancer cell count decrease, they may spread out the length of time between treatments. And because technically the chemo she was on during the trial did in fact keep the tumors elsewhere in her body from growing, that may or may not be reintroduced later on.

The inflammation of the meninges is what has caused the unpleasant symptoms Mom has been experiencing, but thankfully the nausea, headache, vision, and hearing changes have been drastically improved since starting the IV steroids. Her dizziness and weakness with getting around has improved somewhat, but still poses some pretty serious safety risks. A consultation with physical therapy today indicated that she might benefit from at least having a cane and/or a walker at home just for the times she's feeling unsteady, and she may require some physical therapy at home just to rebuild some strength.

Obviously, this is not the most uplifting news. Cancer is something Mom will live with for the duration of her life, because a cure is highly unlikely. This is not to say that she is terminal, or that we're calling it quits, but rather we are shifting gears to make sure we are balancing aggressive treatments to produce the best quality of life.

As you can imagine, Mom has an extraordinary amount on her plate right now. She runs a business and a home, and some changes are going to have to be made. We are well aware that her INCREDIBLE network of friends is chomping at the bit to be of service, so we are reinstating the Helping Hands network in full force. She has already mentioned she might like to start meal deliveries again, so stay posted. But beware, she is an organic/whole grain/wheat grass/soy milk/tree hugging hippie these days when it comes to her food selections... so if you INSIST on making cookies or something- you might as well just deliver those to me directly, okay?

Gwennie and I are going to be spearheading the "Operation Mom" team at home this coming semester. Our goal is that one of us is always home, creating as much continuity as possible, but also giving us each a partner in crime with whom we can share this experience. I know you're all thinking, "don't burn yourselves out, she has friends and family who want to help, etc." and believe us, we are fully aware of what amazing resources we have at our fingertips. Each and every one of you who's offered your support will no doubt be called on several times, and it is because of those offers that we'll be able to take care of ourselves and the best care of our SUPER MAMASAN!

My mom and dad (in for a quick 48 hour visit from Tejas) are a two person percussion section right now, catching flies, passed out in their respective recliners. Wish I could post this to youtube.com.

Oh, and because NOTHING is ever simple. Guess who's home with mono? Go Gwennie!

LP: "Non Issue"

Or that's how Mom described it anyway.

Her LP was finally done Monday at 2pm under fluoroscopy, which allows them to visualize the space in her spine and ensure they were in the right spot. It went famously, and the only problem she had was having to lay absolutely flat for the 90 minutes following to prevent rebound headaches.

Dr. Donadio was in to see us for a good while this morning. Fortunately, she is the oncologist on service this week rounding on the inpatients, so we'll be seeing a lot of her. I'd updated all of her team in Boston via email earlier in the morning, and within an hour, Dr. Choueiri and Dr. Donadio had pow-wowed on the phone about Mom. Can't ask for better attention than that. Everyone agreed that at this point, Mom is best off in the hospital, and Dana Farber would be doing the exact same things St. Francis is doing, so no point in rushing up to Boston for an appointment with the neuro-oncologist there. That's especially nice for Mom because Dana Farber is a production, being such a big city cancer center, and this way she's close to home and her network of support.

Today was a great day overall. Mom's pain was very well controlled, no evidence of nausea, appetite is improving, and we even ventured in to the hallway for a walk. She had a small handful of visitors, but did not overdue it. The dizziness, strained vision, and hearing persist, but hopefully will resolve with steroids.

Tuesday we'll get the LP results back some time during the afternoon, and I'll update as soon as I'm able. And if any of this doesn't make sense, it's because I'm posting at 4:33am, so there.

Cancer = Single Occupancy Room. Bonus!

Well well, St. Franny, can’t say we missed you.

Mom got admitted to the hospital on Saturday afternoon to manage some symptoms that have gotten unmanageable at home, specifically dizziness, headaches, and nausea. The headaches she’s been dealing with for several weeks, but the pain got to be too much, and her eye sight at hearing have also changed so it seemed smart to get things secure while under the watchful eye of her oncologist in Hartford.

Thursday trekked to Boston to have another MRI of the brain and CT scan of the chest, abdomen, and pelvis. To refresh, the serial CT scans are part of the research study at Dana Farber, and the MRI’s have been done every 2 weeks for the last 6 weeks to monitor for changes and possibly find a source for the headaches.

Good news first: the CT scan showed that the tumors in her neck and groin are stable in size. The metastasizes on her belly are still undetectable to touch. All of which is very positive.

Bad news second: this MRI showed inflammation of the meninges.

The meninges are a series of three membrane layers that envelope the central nervous system (brain and spinal cord). Inflammation of the meninges can occur with infection, but due to Mom’s significant cancer history, there is some concern that she is experiencing a rare side effect of systemic metastatic cancer where cancer spreads to the meninges.

The best diagnostic tool to determine definitively if this is infection or cancer, is a spinal tap or lumbar puncture (LP); that will be first on the “to do” list tomorrow morning. For anyone who has had an epidural, an LP is virtually the same, but more temporary. The procedure will be done right at the bedside, and other than the local anesthetic injected at the site, she should experience very little pain.

Since being admitted, she’s been receiving IV fluids and Zofran (anti-nausea) and Dilaudid (narcotic… insert Jimmy Hendrix guitar rip here) with moderate to good effect. I sound like I’m tying a nursing note… The problem is that the headaches come on so quickly, that one second she might refuse her pain medicine, stating her pain is 2 out of 10, then within seconds it can be 7 out of 10.

I don’t want to do any major horn tooting, but this afternoon her pain reached 8 out of 10, the worst it had been since arriving at St. Franny-Panny. Her nurses are AMAZINGLY responsive and arrived with pain meds immediately, but I also did about 20 minutes of Reiki and she seemed to get a lot of relief. She even said her pain got as low as 0! Hooray for the power of touch.

Bottom line, she is in much better shape since being here in the hospital for management of all these symptoms. She’s eating very well when her nausea is controlled, she hasn’t booted once (knock on wood NOW), and now we’re taking in some 60 Minutes while dining on fresh tomatoes and basil.

All the gestures of love and kindness are always appreciated and mean more than each of you possibly know. Right now, she dozes on and off pretty regularly, so it might be best to shoot her an email or leave a comment on the blog to say hello rather than call just in case she’s asleep. You know her, she’ll pull the ‘ole, “oh no I wasn’t sleeping, I was reading!” Sure…

Plan: Tuesday we are headed to Boston to meet with a neuro-oncologist who will be new to our team. We’re not sure if we’ll have the results from Monday’s LP back yet, but we’re going to make a plan and meet the neuro-onc team first in case this turns out to be cancer. Will post as soon as possible after our appointment.

It's a family affair: The Marriage of Ms. Margaret Talbot to Mr. Jeffrey Virchow

25.July.2009