Entries from Toby McSween

Cancer treatment is a difficult and unpredictable at the best of times. It's been 10 weeks since I was released from a scary hospital stay, so I felt I was due to update my journey.

On my last update I was finally stable and despite some crappy chemo side effects, had some hope for the first time in months. I was attending a twice weekly exercise class designed for both current and recovering cancer patients. I felt good about moving my body again. I even enjoyed the muscle soreness that came with it.

I had been having headaches for some time that increasingly got worse. One of my chemo drugs at the time caused me to have high blood pressure and taking blood pressure medication helped a lot. To be on the "safe" side it was decided to do a CT scan of my head to rule out cancer spread or aneurysm. That was clear.

My oncology appointments were every four weeks, so if wanted to remember what to bring up with the doctor, I'd write it down. I brought up the sore, knotted muscle feeling, in my right calf, that wasn't going away entirely despite stretching and rolling. The doctor checked my legs and wasn't concerned, so I let it go. Not the best decision.

My next oncology appointment was scheduled for Monday, March 30th. Two days before that, I began to notice I was short of breath with minimal exertion and my heartrate was elevated. With my oncology appointment only two days away, I decided to rest at home. That Monday, unable to walk more than a few meters without taking a break and breathlessness, I had to have my husband push me in a wheelchair to my appointment. My stats were not great (resting heartrate around 120 bpm and oxygen around 90%) so I was sent to emergency.

I have a CT contrast allergy that requires I pre-medicate, so I was in emergency a long time. I was able to get my chest port hooked up instead of an IV, which made things easier. I finally get my CT scan and wait. The doctor who came to discuss results, explained some of my tumors had stopped responding to treatment and had grown. He also tells me I have a huge clot (mother of all clots was a term used) sitting in the artery to my lungs and spread across both sides. I was terrified. I knew pulmonary embolisms are bad, very bad. I was moved to a unit were I could be revived if I crashed while waiting to go to ICU.

Once in ICU, I had an echocardiogram to see if my heart was strong enough to withstand a clot buster treatment. My right atrium was enlarged (likely damaged from the clot), but it should withstand treatment. I had to have an IV and arterial line placed too. The clot buster treatment was ran and I was monitored regularly, including questions to answer to ensure cognitive function. Within the first two hours I felt the slow down in both my heart and breathing.

An ultrasound revealed the right leg artery is packed full of clots, all the way down and I will continue with blood thinners indefinitely to stop new clots forming. The hope is my body absorbs the remaining clots over time. Cancer makes the blood more "sticky" and blood clots are a common risk.

I was moved from ICU to oncology to continue recovering. I was not allowed to stand or walk for three days. Once I was allowed to stand and walk, I was in awe of how little stamina and energy I had. I was allowed to go home Sat, April 5th. This was the day the hospitals also stopped ALL visitors due to Covid-19, so I was happy to go home.

I was referred to a "miracle patient" for surviving a saddle PE and recovering enough to go home so quickly.

I stopped responding to standard chemotherapies used to treat metastatic colorectal cancer. I have since started a targeted therapy, Panitumumab. I don't have nearly as many side effects. The key one is a "rash" and extremely dry skin that requires use of specific creams to manage and a low dose of doxycycline. The rash is apparently a good sign that I am responding. My tumor marker or CEA also dropped from 28 to 5.9, so another positive sign.

My next CT scan is in July and I remain hopeful that I will see more positive changes.

Two years ago today I received news that would forever change my life. I was diagnosed with stage 3b rectal adenocarcinoma. I spent the majority of 2018 receiving treatment that began with five weeks of radiation and chemotherapy.
Eight weeks later I had major surgery to remove the tumor. I had an open lower anterior resection that included removal of my rectum, part of my colon and nine surrounding lymph nodes. One of the lymph nodes removed was positive for cancer, which meant enduring an additional eight treatments of strong chemotherapy over 16 weeks.

I had a CT scan in November 2018, only a few days after my last chemotherapy session and we were hopeful this was it. The chemotherapy treatments have left me with permanent side effects, like neuropathy in my hands and feet, but I was okay with that because we were going for a cure.
I had hope again and being in my mid-fourties began to plan for the future again, even planning on returning to get a second college degree.

May 2019, I had my six month post treatment CT scan and a follow up appointment with my oncologist the first week of June. This is when I got the worst news for a second time in my life….despite all the treatment and how well I healed, the cancer had spread to my right lung and possibly four lymph nodes. This was worse than finding out the first time.
I held it together long enough for the oncologist and I to put together a new treatment plan, which was to start chemotherapy pills right away. I somehow managed to make it home and keep it together most of that day. When it did hit me, I melted into a puddle of sadness, despair and no hope for the future and stayed in that funk for days.

I spent the next 12 weeks taking chemotherapy pills and had a PET scan at the end of August. Unfortunately, it confirmed the four lymph nodes in question were positive for cancer. The treatment was not working and it had also spread to my left lung. I now have multiple tumors approximately half a centimeter or chocolate chip size in both lungs, as well as a larger tumor in the right lung.
In September I had a port placed in my chest again and started stronger chemotherapy treatment on October 9. I had a CT scan after three treatments and it showed two new tiny tumors, but the oncologist said that was neutral and they were taking that scan as my baseline for the new treatments.

January 20, 2020, I had another CT scan. For the first time in months, the tumors have not grown and there are no new tumors. For now I am considered stable. Stable is the best that many of us with stage four cancer can hope for. With this little piece of good news I wanted to share some of my journey this far. I will be continuing with chemotherapy for the foreseeable future. Yes, it is difficult, yes, I have several unpredictable and bad days out of every 14 day cycle. I am frequently exhausted, have general malaise and not able to do half of what I used to. Sometimes I feel like giving up, but for now I’m still standing.