Hello All-

EK here.  Sareana is spending her second night in the hospital, and doing well.  Yesterday she got up at the crack of dawn to report to the hospital at 530 for the port installation surgery.  Surgery started at 7 a.m. and went fine- the surgeon called me around 745 to report that everything had gone well and Sareana was in recovery.  I got the boys off to school with the help of Kristen from across the street, and was at the hospital by 830 or so.

They got Sareana to a room around 915; she was tired and sore, but nothing compared to post-brain surgery.  Her neck, shoulder, and area around her clavicle where the port is are sore, but this means no more IVs (which have always been tough for her- small veins) throughout the chemo process.  They can put chemo, anti-nausea meds, pain meds, hydration, draw blood, whatever, all through the port, and they can do multiple things simultaneously.

Before starting chemo, the oncologist wanted her to have a bone scan.  Around 1030 they injected a contrast of some sort, then waited 3 hours for it to go where it needed to prior to the scan.  Scan was from 130 to 230 or so, then another couple hours before they started the chemo.

The first chemo medication takes 6 hours to infuse (i.e. 6 hours of dripping via IV).  There was a minor problem with the interface between the port and the IV tube at first, so they stopped right away, tested out the port with another scan to find the problem, and ended up re-"tapping" the port to make sure everything was flowing correctly.  This took several hours, so she didn't actually start chemo until about 730 pm, and it ran til about 130 am.  She was able to sleep intermittently throughout the process.  It's good that she's at the hospital and they're keeping a close eye on her, but that also means constant interruptions, checking vitals every few hours, lots of people stopping by at all hours, etc., so it's tough to sleep.

She spent today recovering, resting, and overall feeling tired, but pretty decent.  They have to wait 24 hours from the start of a chemo session to begin the following session, so she started tonight's session around 8 pm.  It's a different agent than yesterday; it only takes 1 hour to infuse, but it requires some follow-up drugs at 4 hours and 8 hours to help protect her from some of the side effects.  Hopefully she tolerates it well, we'll see tomorrow how she's doing.

The timing means that they won't start tomorrow's session until around 8 pm or so, plus the follow up drugs, so she'll spend Wednesday night at the hospital as well, and hopefully come home at a reasonable hour on Thursday.  Then one more outpatient shot at the doc's office on Friday, and hopefully that's it for this cycle.

The boys and I stopped by bright and early to visit before school, and hope to do the same tomorrow.  I was able to spend most of the afternoon with Sareana, and hopefully can do something similar tomorrow.

Thanks for all the good thoughts and well wishes, hopefully we can send out a post-chemo report in the next week or so.  Boys are doing well, Sareana is in good spirits, we're all hanging in there.

EK

Chemotherapy

After much thought and discussion, we’ve decided to go with the chemotherapy regimen recommended by my neuro-oncologist at Duke. Duke will manage the plan, while a local Fort Collins oncologist will serve as the liaison for administering the chemotherapy drugs. We are pleased that I can have my treatment close to home under the care of a local doctor, yet still have my doctor at Duke follow my progress from afar. As one might assume, both doctors will be in contact on a regular basis throughout my treatment.

The regimen consists of 2-4 cycles with two different drugs, which I’ll call ‘A’ and ‘B.’ Each cycle consists of three consecutive days of chemotherapy followed by 25 days off. Day 1 I’ll receive drug ‘A’ and Days 2 and 3 I’ll receive drug ‘B’. They are both given intravenously. Due to the high toxicity levels of these drugs, the entire cycle will be administered as an inpatient at a local Fort Collins hospital. I will be monitored closely for hydration, and be given specific infusions in addition to chemo to prevent undesired side effects related to kidney function and nausea. Though the chemo regimen will last three days, I will return to the doctor’s office on the fourth day for a subcutaneous injection. This will help provide protection against infection since my white blood cell count will likely be low.

One of the advantages of inpatient treatment is that I will be under continual care of doctors and nurses. Meanwhile, Erin can focus on taking care of the boys at home while I’m in the hospital. He can rest assured I’m in good hands when he is unable to be with me and promises to bring the boys for a visit!

The first cycle begins Monday, September 28, which will prove to be an especially long day for me. Prior to receiving chemotherapy, I will have a minor surgical procedure whereby a port will be implanted in my chest. A port is a common mode of receiving chemotherapy and other drugs. It is often preferred over an IV because a port provides more comfort during delivery of chemotherapy. It will be discretely located under my skin (near the clavicle) and attached to a tube that goes into a vein near the heart. A port can also be used for blood draws and for giving anti-nausea medications, etc. When no longer needed, a port can be easily removed as an outpatient. After the port surgery, I’ll have a recovery period then begin my first chemotherapy session, which may last up to six hours. It does not actually take that long to administer the chemo, but rather a good portion of time is spent introducing fluids into my system so that I’m well hydrated.

After two cycles, Erin and I will travel back to Duke for an MRI followed by a meeting with my neuro-oncologist. At that point he will determine whether or not we should proceed with two more cycles or stop at cycle two. To be clear, the minimum number of cycles I will have is two and the maximum is four.

In comparison to brain surgery and radiosurgery, I expect chemotherapy to be the most challenging phase, both mentally and physically, in this insanely exhaustive process that began in June. I believe this in part because I’m new to chemotherapy so there is a fear factor, and partly because I’ll have to deal with all of the nasty expected and possible side effects for a long length of time. On an optimistic note, it is important to remember that side effects are manageable; they affect each patient differently and will almost always go away after therapy is complete. I hope by maintaining a healthy diet, exercising regularly, listening to my body, and going in armed with so much knowledge, that I will tolerate this regimen well.

The expected side effects that I will experience include hair loss, fatigue, constipation, nausea/vomiting, skin discoloration, and low blood counts. There are also possible, yet less common side effects that range in severity depending on a patient’s overall health and drug dosage that include: bone pain, hearing loss, bladder irritation, diarrhea, problems with kidney function and neuropathy (numbness, tingling in fingers and toes). In order for doctors to determine how I’m tolerating the chemotherapy, they need a baseline or a starting point. Therefore, I recently had my hearing tested, blood drawn, and an MRI. The results for my hearing and blood tests are both in the normal range and thankfully my MRI was “clean.” Am I ready for all this? No, not really. These paragraphs were hard to write, and I’m sure they’re not easy to read. I struggle with the strange irony that I feel healthy today, yet on Monday toxins will be pumped into my body that will make me feel sick in order to make me better. Where is a magic wand when you need it?

The time between my last day of radiation and first day of chemotherapy hasn’t exactly been relaxing, but a relaxed state is hard to achieve when your thoughts are consumed with cancer day and night. Despite it all, space has been made for spirit-lifting activities. Erin and Alex attended the Reno Air Races in Reno, NV together while Dean and I had our own Denver adventure. We eventually all met in the Mile High City where the four of us had some good fun. We cruised around the lake at City Park on a paddle boat until Alex got “seasick.” We shared a few laughs with Erin’s cousin who hooked us up with great food and drink at the restaurant where she works. To put icing on the cake, a good friend from high school treated me to a lovely time at a fancy spa. On a recent sunny day, Erin took me for a ride in the Piper J3 Cub. Today, I tackled hills on my road bike then screamed downhill (mostly expletives aimed at cancer).

I am acutely aware that I have a few bad days barreling toward me, but fortunately, bad days are not my norm. This will be no walk in the park, but if I have to crawl, I will. I expect bad days to happen during this next phase because I’m human; because pain, both emotional and physical, hurts; because I will long to be there for Erin and my boys the way I’m there for them today. Reassurance from friends and family that I’ll never be alone in this fight gives me strength that there will be better days ahead. It’s hard to want something to be over before it ever begins, but I will always show up and do what I have to do so I can, as Erin so aptly puts it, “stick around.”

Lastly, Erin will be posting a brief message on my blog next week to let you know how I’m doing. Thank you for all your positive thoughts and support…none of it ever goes unnoticed!

Love,

Sareana

Typical bedtime conversation with Dean (age 3):

Me: “Thanks for being my boy, Dean.”

Dean: “Thanks for being my mom.”

Me: “I love you, Dean.”

Dean: “I love you, too, mom.”

Typical bedtime conversation with Alex (age 7):

Me: “I love you to the moon and back, Alex. Thanks for being such a good big brother.”

Alex: “I love you to the moon and back, forever and always. Now, can you please rub my back?”

Erin and Alex at the Reno Air Races

Dr. Alex Kelly

City Park paddle boat

After a Cub ride

Radio surgery: Day 10

Yesterday was a long, yet satisfying day. It started with my tenth and final radiation session. It felt pretty good afterwards to throw my mask in the garbage, although it might have felt even better to run it over with a car! I'm proud of achieving the next milestone on what can seem like, at times, an uphill battle. All things considered, I fared very well: no nausea, good appetite, slept well, no hair loss, minor fatigue. I believe one would still be unable to pick me out of a crowd as a cancer patient. However, frequenting the Duke Cancer Clinic on a daily basis for two weeks there are plenty of reminders as I looked around at the damage that cancer can do to those both young and old. It's a hard place to be for me, for anyone really because no one deserves to be there. One of the most pleasant conversations I overheard was between an older gentleman and a young college volunteer as they exited the shadows of the basement waiting area into the sun-filled atrium. The man asked the boy, "What are you studying?" The bright-eyed boy replied, "Biology, I hope to become a doctor someday." Yes, what a lofty and worthy goal, I thought to myself.

A few hours later, Erin and I departed for the airport for a 3 1/2 hour flight to Denver followed by an equally long drive to Eagle. We were greeted by my parents, but the boys had already gone to sleep. In the dark of their room I could still make out Alex and Dean's little chests rising and falling, and could hear the steady sound of their breathing. As I kissed them goodnight, I resisted the urge to wake them up and soak up all their love. I knew after many days apart, it wouldn't be long before they'd pile into bed with Erin and me in the morning shouting out their joy of having me back:) Priceless. And it's been like that all day. Lucky me! The pictures here are from the inaugural day celebration of the Children's Fishing Pond in Eagle, complete with free fishing rods for kids and cupcakes!
           
                        

So, what's next for me to tackle on the cancer front? We are still anticipating the return of test results from molecular sub typing and genomic testing to find a suitable chemotherapy and/or targeted therapy regimen (hope to get those in the next two weeks or so). In the meantime, I will rest and recover from radiation as it has a cumulative effect. I am definitely feeling more lethargic today after ten treatments than I did after the first five, but that is to be expected. In addition, most doctors would not be in favor of beginning chemotherapy until 3-4 weeks after radiation is complete, so we're in a bit of a holding pattern for the time being.

Though it may sound redundant, I want to thank so many of you for sending love, strength, energy, thoughts, and prayers my way. I truly find courage in knowing you are out there taking the time to read my blog, thinking about what it might be like for my family and me to go through what we are going through, and wishing us well. The Pinson/Kelly family is a force to be reckoned with!

Love,
Sareana