Back to Home Sweet Home

Mom was discharged late Monday afternoon, with much improved white blood cell counts and platelet counts. With improvement of these numbers, her immune function was back up and running, so goodbye thrush, mouth sores, and gastrointestinal infection, hello Uncle Eric's creamed spinach.

And that's not all... after arriving home, she did a meditation, took a nap, housed aforementioned creamed spinach, some lentil and lamb stew, followed by chocolate pudding with whipped cream. Appetite: check.

This morning we were right back at the Cancer Center (hence the tardy blog entry) for intrathecal chemo therapy in her Ommaya port. Her blood work was all where we'd like it to be, so chemo was a go.

To review: she receives intrathecal chemotherapy on Tuesdays and Fridays with the hope that this will keep her cerebral spinal fluid clear of cancer cells (which it has been for some time). If it continues to stay clear, they may reduce these treatments to once weekly.

The systemic chemotherapy directly into her bloodstream is given once every month, and is a combination of 4 chemotherapeutic drugs. These are the treatments that REALLY wipe her out by destroying her immune system and sucking up all her energy. Because this chemo makes her white blood cell counts go so low, she becomes prone to infection, and often has to miss a few doses of her intrathecal chemotherapy. What I want to make really clear, is that none of this is necessarily a bad thing!

We want the chemo to rock her system to the core and kill all the cancer, and it might have really bad side effects with it, but as her immune system rebuilds, these side effects go away, and her energy returns. It is a hard two weeks, but think of it this way: she sleeps a lot and doesn't take visitors or lots of phone calls because she is using every ounce of energy to heal herself from the inside out.

In the meantime, we give her lots of fluids to flush the chemo through and out, and keep her hydrated and nourished as best we can. If things are too hard to manage at home, we book ourselves a few nights at Hotel St. Frannie.

So, today is exactly two weeks from her last systemic chemotherapy, and she's chowing down food, checking email, delegating insane to-do lists to Gwennie and I, swearing at the computer for not working fast enough, and making video rental requests. AKA she's feeling a heck of a lot better.

I'm back!

So since my last blog post was basically awesome, I'm posting again. Slash Monica's in Boston catching some well-deserved R&R and asked me to post again.

So where to begin. Mom's thrush and cold sores continue to make swallowing (and therefore eating) hugely painful, so she's lost 2 lbs since Tuesday. Although that's definitely not good news, the positive is that she's losing weight slower than before. Probably because the poor woman has had to put up with Monica and me force-feeding her Farina and split pea soup a la half&half.

The other problem that's reoccured within the last 24 hours is that stinkin' diarrhea (so to speak). She had it so badly today that it got her admitted for yet another weekend and St. Frannie's. Huge bummer as always, but Mom's a trooper and realizes that if they want to admit her, it's for her own safety. Her doctors seem to think that there's an infection attacking her entire digestive system from her mouth to her intestines... cross your fingers that it's not c. diff recurrence!

Otherwise, she's still incredibly neutropenic (low white blood cells=no flowers, no raw fruits or veggies, and NO visits from sick people or anyone who's been around sick people), so no chemo today. However, her spirits are incredibly high. A nurse just came into her room to talk about symptoms and asked if the diarrhea is causing any irritation (if this is TMI then you are reading the wrong blog, home-dawg). Mom's response: "No not really, I'm really lucky!" If I was in her position, I'd be thinking a lot of things but that I'm lucky would not be one of them. Gotta give the woman props.

Mom never EVER fails to mention how flabbergasted she is by the amount of love and support that comes from you all. She firmly believes that that is just as healing as any medication or chemotherapy she could ever get, if not more. Shout-outs all around.

H-H-H-Hand Washing City, Here We Come

Have had a seriously sleepy week since receiving systemic chemotherapy last Tuesday and Wednesday. The systemic chemo is the combination of 4 chemotherapeutics given over two days, the objective being to keep the tumors elsewhere in her body in control. Seems to be working well, since her swallowing continues to be flawless and her appetite is raging. The major issue now is that the thrush came back with vengeance after systemic chemo. Thrush is a fungal infection that likes to take advantage of people with low immune systems, and it can show up in the mouth right down the throat. Side note: it's especially common in baby's, which is yet another reason breastfeeding is such a great source of nutrition for infants because they benefit from their mother's immunities. But I digress... Mom's thrush is making it painful to talk, and she's happiest drinking smooth soups and broths these days, but weight is steady at 137.9 lbs this morning. We're just going to keep the creamy soups and snack packs flowing.

I, however, am gaining PLENTY of sympathy weight: 6 lbs to be exact. Thank you ice cream pie with chocolate rice crispie crust. Thank you death by chocolate. Thank you blueberry pie. Thank you Ben & Jerry. I have also gained gym membership.

All the side effects are totally expected with the systemic chemotherapeutics: mouth sores, thrush, diarrhea (cha cha cha), and complete and utter exhaustion. On the other hand, she's experiencing minimal pain otherwise, and barely any nausea. We take the good with the bad these days.

Other exciting news: we're the proud new owners of multiple safety bars to help Mom ambulate around the house, and she's also scored herself a snazzy new walker with a seat. There is a very cool program in Unionville, CT through The Center of Elderly Services, called The Loan Closet. We learned about it through our physical therapist (from McLean, THE BEST), and anyone who has unused medical equipment can drop it off, and anyone who needs it, can call, get on a waiting list, and pick it up. Use it for 6 days, weeks, months, doesn't matter, just return it when you're finished. It's recycling at it's purest. Think of all the pairs of crutches, walkers, shower chairs, that people might use for a month or two, are in pristine condition, and end up at the dump? We're big fans and highly recommend it for all your medical equipment needs.

Still LOVING every bite of our Helping Hands food deliveries. We've been nauching on vegetarian lasagna, beef stew, cream of chicken soup, butternut squash apple puree, corn on the cob, and the list goes on and on. We are eternally grateful. There is nothing like not having to think about what's for dinner after spending a day at the cancer center.

Mom being broke out of the house by Marilyn for a tea date at Passiflora in New Hartford.

Sunday morning eggs benedict.

The english muffins and bacon were a little tough going down, but she housed the poached eggs, holondaise, and spinach, no problemo.

Today we're at the cancer center, one week after getting systemic chemo, and Mom's white blood cell counts are too low to receive intrathecal chemo. We're not terribly surprised, because the week after is when counts are expected to drop. Because her counts are so low, she's considered "neutropenic," which means no raw fruits or vegetables, no fresh flowers, and absolutely NO visitors that are feeling at all sub par or who've been exposed to anyone who's sick. She virtually has zero immune system. I might just hose down Gwennie in the driveway after she gets home from work.

Adventures in Port Access

Once a week, Mom's port needs to be "deaccessed" and then "reaccessed." The magic day happens to be Thursday, and so this past Thursday I ambitiously decided to offer Mom a bath while she was not connected to anything. What this ultimately turned in to was me getting in the tub with her while still in my pajamas, because let me tell you, it is a LONG way down when you're working with someone who has limited lower body strength. At any rate, it was well worth the effort, because every time Gwennie and I would check on Mom we'd get a "just five more minutes," for about 20 minutes. Total bath time: 40 minutes. Pairs of pajamas soaked: 3. Variety of bath products used: 3 (because obviously she needed bath salts, and continues to shampoo and condition her Sinead. Odd). Seeing Mom outlandishly happy and glowing: priceless.

Once Mom was out of the bath, it was time to reaccess her port and hang IV fluids. First, Gwennie starts by helping Mom choose an outfit from the selection of goodies I recently picked up. Daisy Fuentes for Kohls. Don't knock it till you try it people.

This is Mom's port. It's a small hub that sits right below the surface of the skin. She actually has a double port, and each port hub has a lumen that travels in to a major artery near the heart. The advantage to a double port is that she can get two things at once that may be incompatible with one another. For example, if she were to need two IV medications at the same time, she could get both, because they don't mix until they are in the blood stream.

While I'm washing my hands for at least 15 seconds, with lots of friction in water no less than 110 degrees, Gwennie and Mom get pumped up for port access.

Then I create my sterile field, so that when I've put on my sterile gloves, I can touch all my supplies without risk of contamination.

With clean hands, I scrub with three alcohol swabs, moving from inside to out, or clean to dirty.

Next, don sterile gloves. And if you are a nurse, you are very fond of this saying.

Time to access. Just by touching Mom's port, I can feel the center and where I need to access. Note to self: Mom hits roof when accessing left port. Keep clear.

Now we're accessed, and I flush with some normal saline and check for blood return by pulling back a bit on the syringe. This confirms that I am in the right spot.

Dress it on up with a transparent dressing...

TA-DA! Port accessed, dressed, and IV fluids are up.

But remember kids, always sign, date, and time your dressings.

Stay tuned for Adventures in Disconnecting IV Fluids, featuring Gwennie, my kid sister who's going to be a nurse but just doesn't know it yet.

Pump the Gas

"Pump the gas" originated purely from observation of my father's driving style as the years have gone by, however it is also a fair analogy of mom's progress: strong progress forwards, occassional stalls in place.

This past week has been wonderful, filled with physical therapy, acupuncture, another healing session, and a visit to Sharon, CT for three days to see family. It seems that her double vision and swallowing issue are improving with each passing day. Likewise, she has gained almost 5 pounds with her renewed confidence and delicious deliveries from friends and family alike. Of course, with the good comes some bad, or more of a nusence rather. Saturday she ended up in the hospital with crushing chest pain and what felt like the return of her sore throat. Two nights in the hospital and multiple tests, they chaulked it up to indigestion. For serious?

So she's back home, doing beautifully. With her white blood cell and platelet counts back in the green, she is receiving both systemic chemo and intrathecal chemo this week. That means an ENTIRE day in the hospital yesterday, as well as the better part of today, and a quick visit tomorrow for a neulasta shot.

Finding balance on a daily basis seems to be one of our greatest challanges, because when she feels great, Mom might overdue it a bit and then pay later. Even "quiet days at home" are littered with visits from physical therapists, home health aids, etc. Not to mention the phone, email, and general daily goings on in a house. Our escape to Sharon, CT was just what the doctor ordered, for more reasons than one.

Let me preface the following with sharing that whomever is on overnight "Mom Duty" has to get up and change her IV fluids once, then get up 5 hours later and disconnect her fluids, not to mention the frequent bathroom trips that come with 2 Litres of saline. While in Sharon, we weren't out and about during the days so we tried splitting the fluids over the morning and the evening. One night, perhaps after a chilled beverage or 2, Gwennie and I were elated to realize two things:

1. Mom's IV fluids were done and her port was disconnected by 10pm.

2. Dad was around, which meant if she had to get up in the middle of the night, he was all over it.

A full night's sleep is a rarity these days.

Which inspired an impromptu dance, obviously. My appologies for not being skilled in video editing, and for my father not knowing how to stop recording when the show is over.

And then an encore:

My parents dared me to put these on the blog. I don't think they thought I actually would.

Holy Deliciousness, Batman!

For those of you who don't know our uncle Eric, you are missing out. He's a chemist by trade, but a chef at heart. Tonight he showed up with THREE different purees: pumpkin carrot, gaucho pinto, and cassoulet. Oh yeah, and played guitar for us as well. I like this new plan: food is good, but food and entertainment is above and beyond.

Here is a little trip down memory lane, and a glimpse in to life at Camp Talbot...

Right: Day 1 of the clinical trial at Dana Farber Cancer Institute, holding her bottle of mystery pills, May 2009.

Left: A visit from her brother Thierry, who thank goodness has retired because we've really put him to work.

Right: Mom and Aunt Coco's trip to Colorado in

August.

Left: Mom and Papa stoopin' it.

Below: Papa flanked by two of his ladies, Mom and Coco.

Below: Uncle Eric rocking some serious acoustic guitar skill, despite a bum shoulder.

Your truly, the kitchen crew.

Ensure On the Rocks with a Twist

The last few days have been an exercise in creating tasty Ensure bevies. So far, chocolate and banana are a hit, but the test kitchen continues to crank.

Our mom has been over the moon about being back home since Monday. Tuesday and Wednesday were packed with visitors, business, to-do lists, and perhaps not quite enough down time. We've been very productive over here at Camp Talbot. No one expects that there life will be so profoundly interrupted smack dab in the middle, so for the last few weeks, spare time has been dedicated to helping Mom just get a handle on all the pieces of her life, so the rest can just be gravy.

Our good friend Marilyn D. recommended my mother spend some time with a man named Richard P. Jackson. He considers himself a "psychic medium" and is well versed in a laundry list of healing techniques. Understandably, there is a very wide variety of beliefs from one person to another when it comes to healing techniques, but continue reading with an open mind. My mother has always been a very strong believer in meditation, yoga, thoughtful breathing, and recently started attending group sessions at a healing retreat in Hartford. One has to be very thoughtful when entering this world of alternative therapies of course. Around ever corner someone is trying to sell us on coffee colonics and raw food diets- not judging- just saying it could be a full time job just trying to navigate through the overwhelming number of options that exist. Richard appealed to us for a few reasons, the first being Marilyn's referral, because her husband survived cancer several years ago after being given a less than cheery prognosis and is healthy today. Richard himself has also battled cancer, and understands first hand the importance of mending modern medicine with alternative healing practices. A lot of their first session was chit chat (man likes to talk), but when it came to the actual healing portion of their encounter, Mom was visibly calm, her blood pressure went down, and she described herself as almost being in a euphoric state.

Now whether you're an eye-roller or a believer, what is most important to keep in mind is that alternative therapies have always been important to my mother, and she believes in the power of true healers, and that is enough to sell me. If it is important to her: boom. Done.

Over the course of the week, her swallowing has improved remarkably. Her vision remains double in the left eye, but she is able to perceive color and objects unlike the week before when she felt nearly blind on that side. Yesterday she went in for intrathecal chemo and Dr. Donadio felt that by touch alone the mass on the left side of her neck had reduced. Regardless of whether the chemo is doing its job, or she is being "healed," or it's the tasty cocktails I'm constantly shoving down her throat, something is working. She is weak, and gets fatigued easily, but she feels really good, and that is what is most important.

She did not end up receiving chemo yesterday because her platelets (clotting) and white blood cells (immune) counts were low, instead she received a platelet transfusion and some fluids. Her counts will be re-checked on Tuesday and if they've improved she'll resume chemo then. This is hardly uncommon. Chemotherapy works by really testing your immune function and throws all sorts of things out of whack, so it is actually surprising to me that she hasn't needed a day off yet. Systemic chemo was also scheduled for next week, but they may postpone that a week just to let her body catch up with white blood cell production.

The G Tube discussion remains on the table still, but every one's ultimate goal is for Mom to maintain her nutrition by eating/drinking, so we continue to persevere. Today, I master butternut squash puree (with obscene quantities of butter and cream). Will report on the outcome later. As for fluids, little Miss Gwennie has gotten and crash course in administering IV fluids through Mom's port so that she or I can give Mom 2 liters of normal saline while she sleeps. I re-access Mom's port once a week (that's the needle part), and then whoever is on overnight Mom duty maintains her fluids. Gwennie is doing so beautifully, taking on new tasks each day, but she still isn't sold on nursing... keeping my fingers crossed.

As for the rest of the household's nutrition status, we received the most WONDERFUL treats from our Helping Hands rock stars this week. Lynn, that chocolate cake, just quit it. I would eat a sliver, then glance at the cake, and it was as if there was an aura around it chanting "yes yes yes." And Judy H, you are still feeding us, three days later. Every one's generosity materializes in to more delicious treats that seems to find their way here, and we are eternally grateful. You are keeping us happy and full.

On the schedule this weekend: Mom spent a quiet day today with her sister, our uncle is delivering white bean puree and serenading us with his classical guitar skills, and Sunday is Mom's at home spa day. Mani, pedi, facial, massage. The works for the ultimate fighter.

Hope everyone is having a restful and safe holiday weekend!

The President Called. He's Looking for His Obama Port.

Today's post title is courtesy of one of Mom's oldest and best friends, Marilyn R. who "Mom-sat" last night while her daughter and I went out to dinner. Clever clever.

Results galore this morning, finally!

1. The cytology report showed that Mom's cerebral spinal fluid (CSF) is clear of cancer cells, which is extremely encouraging news. What they were looking at exactly was the fluid extracted last Friday before her intrathecal chemo treatment. Before every treatment, they pull out some fluid for analysis and are constantly checking cell counts and comparing them to previous samples.

2. The MRI conducted of her spine last night showed that there is "disease in the spine," which they know because there are tiny indents and holes in the bone. As far as they can see, there are no masses in the spine, and there is no direct impact on the nerves as of yet. As the covering oncologist said, "we care more about nerves than we do bone." So at this point, we're not terribly concerned because this could have been there for a while. It does not give us any answers about the numbness/tingling in her feet, but Mom says those symptoms have improved a bit since yesterday. Moving helps, so we're pacing the halls like crazy people.

3. Taking in adequate nutrition is an immediate concern. How much would you want to eat if you could only have "nectar thick" foods, had to cough, turn your head to the right, swallow, cough, and repeat? Hydration and nutrition will quickly become an issue, especially as we continue to hit her with chemotherapy. She needs calories and reserves to keep ticking. Today we started the discussion of placing a gastronomy tube or "G tube." This would provide direct means in which Mom can get both nutrition and hydration, while also keeping her intestines and gut moving. It will help her put on weight, have more energy, and take the pressure off of myself, the "how about another sip of ensure, Mom" daughter. When we see Dr. Donadio on Friday, we'll have a better sence of when they'll place the G tube.

On to the plan: Mom will receive her intrathecal Methotrexate via the "Obama Port" in a few hours and then we are HOMEWARD BOUND! Avon Mountain, watch out. We're coming over.

Wednesday and Thursday will be filled with visits from Mom's sisters, brothers, nephews, nieces, a masseuse, and a mani/pedi. One must never have unkempt nails in times such as these.

Friday we're back in for intrathecal chemo and and appointment with Dr. D.

Too many amazing things happen in a day to share all of them, and I know I don't give enough credit to individuals as often as I should, so please forgive my brain, because I assure you nothing is overlooked. Mom woke up as her nurse came in and said, "I just wake up every day and choose to be happy. Happiness is a choice, and it has served me well." Not 20 minutes later was she blessed with a visits from all sorts of administrators and physicians that have become her friends over the years from all walks of life. There is a chair pulled up to her bed that is a constant rotation of physical evidence, to how if we treat those around us well, we'll be treated the same in return. Makes you think. Happiness is a choice. Do the right thing, and it will serve you well. Seems simple enough, doesn't it?

That's all the news fit to print, for now anyway.