Notes from Sareana: 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?”