Little things (and lots of them) mean a lot

With thanks to so many good friends in Florida who helped pack boxes and load the truck, Kyle was able to make it back up to NY the night before Cathy’s chemo session. On his way North, Kyle was able to stay at his mother’s in VA and to also visit with his sister and family.  Since Michael and Gary volunteered to provide a storage area, Kyle drove to PA before continuing to NY. It was a very long day for Kyle but he achieved his goal.


Considering the anxieties that naturally go along with waiting for someone to arrive safely from a long journey, we’re glad to report that Cathy’s latest chemo went well and followed the pattern of previous rounds with one key difference... Up until now, the routine has been for Cathy and Kyle to visit MSK on a Thursday and then return the following weekend (after 48 hours) in order to bring back the empty canister (O'Bello) and allow technicians to remove the tube from Cathy’s port. During this last session at MSK, however, Cathy and Kyle were taught how to remove the tube themselves and did so without a problem.  Since the empty canister can now be exchanged when Cathy goes in for her next Thursday chemo session, removing the tube at home saves Cathy and Kyle from having to make that weekend return trip.  It’s little things like this that are a big plus.


In terms of side effects from the chemo, they have been mild so far - a touch of nausea, ‘tingling’ in the extremities, sensitivity to cold food - which Cathy has been handling very well and matter-of-factly.


The day at MSK was another long one but it allowed for an extra bonus this time. Cathy’s brother, Ken, visited with Cathy and Kyle at MSK after work and brought gyros from Gyro II (located across from Madison Square Garden and a popular pre-game stop for many New York Rangers hockey fans). Whenever Cathy attended Rangers games, she always looked forward to the gyros as much as the game so this was a real treat.  


The "blue house" (NY) has been a beehive of activity since Kyle's return.  The moving truck was unloaded, boxes moved and unpacked, and furniture arranged with invaluable help from Ken and brother Glenn. Team Cathy is still unpacking and finding every available storage space possible but as the pile of boxes in the living room slowly but surely shrinks, we know we’re almost there. 


In the meantime, Carrigan has been delighted to ‘rediscover’ (and be reunited with) her toys as well as  some favorite books; enjoys playing with her tea set and riding her tricycle; and is happy to be sleeping in her own crib again.  For their part, Cathy and Kyle seem equally relieved to be back in their own comfy and familiar bed as well.


This move was also a big incentive for Cathy's parents to finally start to clean out and discard accumulations of almost 50 years!  Frank and Marcia warn that this is what can happen when you never move (and are sure many blog readers are nodding their heads in agreement and sympathy right now)! 

The New Normal

A friend referred to the changes in our lives as the ‘new normal’ and that term seems to fit. As the years go by, we all come into new normals - teen years, college, marital status, babies, etc. So, here’s what this looks like at the moment:


Cathy, Kyle & Carrigan will be ‘fully’ moved in with Cathy's parents when Kyle returns to New York with the rest of their ‘stuff’. Carra is looking forward to having her tricycle and teapot set as well as sleeping in her own bed/crib.

Cathy has been able to enjoy the company of old friends and renew acquaintances since moving back to New York. This is in addition to seeing siblings, cousins and extended family more often.

Kyle is getting used to being surrounded by Yankee fans (although he has taught Carra to say “go Red Sox”). He continues to work on his perpetual ‘to do’ list which includes find a job, look for new doctors, organize files related to Cathy’s treatment, plus a myriad of other tasks.

Carrigan is enrolled in a daycare center from 8-12 noon Mon-Fri. In Florida, she was in daycare full-time from the age of 4 months so she seemed to miss this in NY. She went for a ‘trial day’ last week and had a great time playing with other children and also getting to ride a tricycle. It’s going to be a part of the day that both Carra and the adults look forward to. Cathy/Kyle have also been taking Carra to local playground parks in the area. Although the ‘airplane’ park she loved in St. Petersburg will be hard to replace, they have found several parks she enjoys where she can run off some of that high energy.

Cathy's parents, Frank and Marcia, are getting used to the child safety gates and doorknob covers which gives them some peace of mind. They are in the routine of their expanded household and especially enjoy the sound of the ‘pitter patter of little feet’ overhead in the morning as Carra runs back and forth between the two bedrooms. Listening to Carra sing and talk in that delightful 2+ year old voice is priceless. With Cathy and Kyle here, there’s usually a full pot of coffee brewed, Marcia can plan fish for dinner (for 2) and they now have an in-house computer techie. Frank has his baseball-football-hockey TV partner again in addition to gaining a history/politics conversation partner.

Of course, all of this is going on during the new norm of biweekly (every other week) chemo for Cathy. As the next session will be only the third one, we can’t predict if the effect on her will be the same as after the first or second. However, as it continues we may be able to discern a pattern of sorts and to come to know what to expect. Hopefully some changes can be made that will make the in-hospital chemo sessions shorter and less tiring and we’ll fill you in on that if that happens. In the meantime, we make plans around the chemo days and schedule activities for the ‘off’ week.

Portobello

Cathy has completed her second round of chemo.  As you know from previous blog entries, Cathy has a port into which the chemo is administered over 48 hours from a bottle contained in a fanny pack. Cathy and Kyle consider the contraption part of the family now and, therefore, have taken to calling it O'Bello.  (Port + O'bello = Portobello).

The only major side effects so far are sour stomach, fatigue and cold sensitivity.  By cold sensitivity the doctors mean that if she drinks something from the fridge it will feel like needles going down her throat. These effects should only occur while the chemo is being administered and possibly for a few days after. The good news is that Cathy's form of chemo is not expected to cause a loss of hair, only a thinning and is supposedly mild in terms of nausea.

Chemo Starts Smoothly

Although yesterday was another long day at MSK, all went pretty smoothly with the start of Cathy's chemo. She came home wearing a small fanny pack that holds the chemo container and it does not generally restrict her movement. Fortunately they had inserted the port during the surgery in Florida. Although Cathy was tired from the long hours, she sounded upbeat. She is scheduled to receive chemo every other week in this manner. Even though the site of origin has not been officially identified, the protocol being followed is the same as for gastrointestinal cancers. Our hope and expectation is that future sessions will be shorter.

Cathy to Start Chemo Today

After an initial visit to MSK last week when Cathy registered and met with her doctors as well as the finance department, she was given an appointment for an EKG and CT scan with plans for chemo to start a few days later.  However, even though Kyle and Cathy were told numerous times everything was OK (meaning all papers needed were filed/sent to the appropriate offices), the last few days have been spent going around in circles with insurance, financial and scheduling.  Now that all the paperwork has finally been settled, Cathy will be starting her treatment today.

Cathy will be meeting with her oncologist in the morning so she can explain all the chemo.  After that, she will get bloodwork and be hooked up to a chemo bag which Cathy will have to wear for 48 hours in order to receive the prescribed initial dose (assuming it is a waist pack bag, though, Cathy has been told she should be able to go about her usual routine).  After that she will have a CT scan of her chest, abdomen and pelvis.  It'll be a pretty long day but we are glad she can start chemo now instead of having to wait.

Kyle has already flown back up to New York to be with Cathy for this first round of chemo and, in fact, will be staying.  Carrigan missed Kyle terribly when he went back to their 'old home' aka 'yellow house' and now delights in having him back in their 'new home' aka 'blue house'.  Kyle also missed Carra and Cathy way too much so, after talking to his school, he has taken his leave of absence effective immediately. 

For her part, Carra is quickly getting acquainted with her new surroundings.  Baby gates were installed in key locations to give everyone more peace of mind as Carra explores but baby-proofing continues around the house as everyone delights in her antics and discovers just how resourceful she can be.  Meanwhile, Carra and her cousin Bryce (almost two years old) are having lots of fun playing together and everyone has a good time listening to their conversations.

New York

TeamCathy has arrived safely in New York after traveling via Amtrak Auto Train from Sanford, Florida to Lorton, Virginia.  The Auto Train is obviously not as fast as flying but it is a great way to shorten a long trip while still allowing for a car.  The ride was a little bumpy but proved to be an enjoyable new adventure for Carrigan. 


The long train trip was followed by a shorter car ride rewarded with a relaxing overnight visit with Cathy's brother Michael.  In addition to enjoying Michael & Gary's "B & B" hospitality, Carrigan got to play with cousins Tyler and Daniel, run barefoot in the grass with Uncle Gary trying to keep up, and to have a field day in the upstairs playroom. Oh, what fun!

In preparation for TeamCathy's arrival in New York, Cathy's brothers had already moved, cleared, sorted, and reorganized stuff in a suite of rooms at their parent's house last weekend to make room for Cathy, Kyle and Carrigan in their 'new' home.  Although there is still moving and unpacking to be done, they will have a cozy, comfy, familiar place of their own.

in addition to packing, there were a lot of other things to take care of before leaving Florida.  Getting everything necessary in place for Cathy to be treated at Memorial Sloan Kettering remains the most important task.  Fortunately, Kyle is handling this monumental job - including coordinating health insurance, getting medical records faxed/sent, filing leave documents, and lots of phone calls - in a super-organized manner. 


Both Cathy and Kyle (as well as all of us on TeamCathy) are grateful for the cooperation they've received from the doctors and their staffs, from their schools' various offices and reps, and from MSK's reps.  We still have a long way to go and know the path is not going to be an easy one so we continue to value the support and prayers that everyone has offered.  Thank you!

Diagnosis: Adenocarcinoma of unknown origin

Cathy had her long-awaited appointment with her oncologist today and the official diagnosis is adenocarcinoma of unknown origin (which basically means they don't know the source). 

Fortunately, we hear that this is not so unusual and Memorial Sloan Kettering has protocols for treating this. We have already made contact with MSK and they are coordinating everything that's needed with the Florida oncologist's office in order to make a smooth transition. Because the cancer is of unknown origin, we expect to be referred to a general oncologist. We thank everyone for their advice and recommendations while we were going thru this process.

Cathy is doing very well in her recovery and amazing her doctors. The doctor asked Cathy how her appetite has been and Cathy told the doctor it was very good. In fact, Cathy was concerned she was eating too much and was gaining weight. To her surprise, the doctor said she should eat what she wants - milkshakes, burgers, etc - and not worry as patients who gain weight before chemo do better. So, bring on the 'boo-fay'. 

 

It is so interesting to see things thru the eyes of a little one and how much pleasure they get from simple things. Carrigan has been so good and understanding that Mommy can't pick her up but says, "when Mommy better, sit on Mommy's lap". Since Cathy's been home she enjoys just cuddling next to Mommy which she missed during the hospital stay. We are looking forward to getting up to NY shortly. Carrigan is ready to go to Goong (Grandpa) & Pau's (Grandma) house and to see her uncles and cousins and the move will also bring her to closer proximity to the Nevin side.

 

Although TeamCathy is ready to get moving on to the next step, Cathy's doctors have said chemo does not have to start immediately. In fact they say that patients who have additional time to recover from their surgeries do better with chemo because they're  stronger. This definitely reduces some level of stress that we do not have to rush into the next stage.