Tuesday, February 6. First Solo Chemo. Today is my 9th total round of chemotherapy and my 5th round of Taxol. Since I have been able to tolerate the Taxol infusions much better than the Adriamycin /Cytoxan combo and am even quite functional afterwards, I have decided to go solo. I call this my day of being a ‘big kid’ because I am taking myself to chemo and seeing how it feels to be more independent.
I am not really solo as I am never alone there – I am with my current ‘in group’ of cancer patients going through chemotherapy. I am the first one in my pod today, so I have my blood drawn, then wait for the doctor to check bloodwork and approve chemo. While I wait, two others arrive in my pod. We make small talk at first then share more as the time passes. It seems to be easier to share info with the ingroup as we can understand some of each other’s plight. As we talk and learn more, I do not like that my two groupmates are going through 2nd cancer diagnoses. The gentleman across from me had colon cancer that was caught early and now he is here, roughly a decade later, for his first 1st infusion for kidney cancer. The lady beside me had very early stage breast cancer where she only had to undergo radiation and lumpectomy, but no chemo. Now she is back, also about a decade later, fighting lung cancer. A couple of weeks ago, one of my groupmates had liver cancer that was caught too late to operate. She is getting treatment to stay alive, not overcome cancer. I am discovering just how many lives are impacted by cancer, not just once, but often multiple times. Some are caught early and others are too late for a ‘cure’, only treatment to slow down the progression of cancer.
As I leave, I reflect on the experiences of these others battling cancer and am thankful for today in spite of what I’m going through. An added bonus is that for the first time I finally have the energized effect of the steroids that I’ve heard about but not experienced. Maybe it’s the combo of steroids and feeling some independence for the first time, but either way, I’ll take it. I felt so good today that I got a lot done. I went to the pet store and was helped by my favorite employee. I call him the Mudd Bay version of Richard Simmons. He is always in a chipper mood, heartily greeting customers coming into the store. I smile every time I see him as his positivity is contagious and is a mood booster. Afterwards, I head to the grocery story, then to pick up Mikala. At home, I clean and cook dinner.
Today is a good day for a walk, so I walk Bear after my busy day and first solo infusion. I am feeling so good, I think I may be ready to start re-adding exercises. In spite of the minor mouth numbness, the chemical flavor getting worse, and the hairy coating / layer of scum on my tongue (that’s what it feels like – ew), I’m having a great day! It’s been a while. Wow – I feel like somewhat human again.
Going to chemo by self was empowering!
Image: First solo chemo.
Wednesday. I’m still feeling really good today. Who needs sleep?! I don’t even care that the steroids kept me up last night. Something finally gave me energy, and I feel pretty good a second day in a row. It’s Matt’s 30th birthday, so I stop by for a visit and give him a present. And, of course visit with sweet Aiden.
By Sunday, I’ve tried a couple of workouts beyond my walks with Bear. I call them ‘baby’ or ‘old lady’ exercise sessions because they are so low key compared to what my brain and body usually prefer. I have to remind myself to rest and not go balls out (i.e. do a hard workout where I’m sweating all the bad stuff out and tired yet energized afterwards). I really am not very good at this moderation stuff. The early attempts at exercise, especially during the first phase of chemo was so exhausting, leaving me in tears, that now I’ve been almost afraid to even try more. This has mostly been a good week in spite of the past 23 straight days of measurable rain (UGH!).
Image: Happy in spite of my bald head and quickly fading eyelashes and eyebrows!
Monday. 2/12. Chemo round #10, and Taxol round #6. Yes, I most definitely am counting this shit down! Six more infusions to go after this busy day. I am going in on a Monday this week because it was time to see doc and that is what fit his schedule. I’m only six days between infusions, the shortest ever. Good thing I had a positive week!
After I have my blood drawn, I head off to see Dr. Sui for the first time by myself. He is a bit surprised that I am alone. I think I bug him a bit with my future tripping, and he is a good sport about settling me back down. I want to plan ahead with the next steps, but I have learned (and am still learning) that cancer treatment is more in the moment. What do we have today and what are we doing to make life as comfortable as possible in spite of whatever torturous treatments a patient is going through. Of course I ask him about radiation treatment, which is not even the next step as the next step is surgery, and radiation protocols are often based on the pathology reports from surgery. So, to humor me, he does tell me that the normal protocol is 5-6 weeks, but I may be able to do the more intense / shorter protocol of 3-4 weeks. Basically settle down and that will be decided in time. In addition, as I proceed through the phases, I start to realize each person involved in the process has their different specialties and his is not radiation (or surgery – I’ve asked him surgery type Qs, too). I will be working with a radiation oncologist for that phase of treatment. All is well other than mild anemia and he is glad to see that I am tolerating the Taxol infusions much better than the A/C infusions – as he expected.
Back in the infusion area, my nurse joked with me that that another patient named her cancer because it was pretty like having a baby over a nine month process and giving birth at the end. Well, since it is my left breast, i.e. the ‘male’ breast, so maybe my baby needs a male name. Too bad fuckerhead is already taken! Maybe Carcin. It is invasive ductal carcinoma, so Carcin fits. (I really only came up with a name writing this and have not been calling my cancer baby Carcin – maybe I will now…)
Mole check. Roughly about a month ago I discovered a new spot in my bikini area that bothered me because it didn’t look right, so I called and made an appointment for a mole check. I had seen her six or seven years ago because I spend as much time as possible outside and in the sun and spent so many of my childhood years without sunscreen and had plenty of sunburns. This whole chemo process is quite hard on the skin as well. Many people turn greenish / grayish, and I have noticed some very mild skin color changes, but mostly dry skin, even well beyond my normal dry skin. I tend to be meticulous about lotions and moisturizers (NO smells – triggers horrible allergies – achoo) as I work to ‘age gracefully’ or more realistically, battle some of the physical signs of time and aging. AND, I want to keep aging because that means I am still alive. Mole lady, aka Maggie, does a great full body check and noticed another mildly suspicious mole. She didn’t think either of them were anything, but since I am going through chemo she suggested we biopsy them both to be on the safe side. The results will be back in about a week. Sure, whatever, let’s do it.
Mikala. So, Mikala woke up pretty sick this morning, but since I was distracted by a Monday morning chemo infusion (which had me nervous all weekend in spite of my good mood) and afternoon mole check, I sent her to school. She had signs of the flu waking up sick out of the blue, and this is a horrendous flu season. Yep, I sent her to school with cooties to share. And, of course, she came home sick and then I realized that she probably should have stayed home today. OOPS!
Tuesday and my kid is still really sick. I took her to get a flu test, and even though it came back negative, her doctor thought it may be a false negative based on her symptoms (fever, body aches, chills) and the quick onset. This was the first time I ever wore a mask in a doctor’s office – well, we both did. I am still pretty nervous about getting stick since I’m immune compromised, and frankly don’t want to be in the same vicinity as this sick kid. Plus, I’m no longer getting the booster shots because of the lower dose of chemo and am slightly anemic, upping my risk. Doc recommended Tamiflu anyway, and I called nurse line to see what recommendations they had for me. The nurse suggested the normal of washing hands often, wearing a mask, wiping everything down with bleach, staying away from her, and keeping an eye on my own symptoms. That night I got stuffy – uh oh!
Mikala is a cuddler when she is sick, and she wants lots of extra love. When she was little, by day 3 of any illness I was ready to never cuddle again! 😉 She was super upset that no one would love on her. Dad even said, ‘Get away from me.’ We don’t want her cooties.
Wednesday. Even though I thought it was a bad idea, Mikala had a ‘’social hour’ thing going on at school and wanted to try a couple of hours. Go ahead. Judge away. I am usually uber cautious about spreading germs and making other people sick, but this day I don’t have the reserves, so sure, go to school! It’s her last year at Aspire and she actually wanted to go to school! I am not arguing with that. She only made it about 3 hours, then called to come home.
Image: Happy Valentine’s Day!
Thursday & Friday. I hit a wall on Thursday and could not make it off of the couch. All day. I did start feeling better on Friday, so I decided to do a little ‘80 year old lady workout’ because I’ll still be running around and exercising staying as active as possible when I’m 80. I figured it may be something like this. About 20 minutes into my workout, I was done, and the entire weekend I was tired. Damn, I want to do things because I am mentally bored. I love my job and am doing some work, but I need more mental (and physical) stimulation than just class prep. I’m jonesing to sit outside in warm sunshine and soak up some heat in warm outside air. Yes, well, it’s in the 40s this week and down to 30s next week, so that is not going to happen. I love FaceBook and keeping in touch with loved ones across country, and the downside of it is that there is record setting heat back east right now and that knowledge is NOT helping. Plus, I am so done with the chronic bloody nose and stuffies this week. I realized my stuffy feeling down was just a side effect of chemo mixed in with my allergies. Ugh!
Image: Snow in my front yard – UGH! Pretty to look at and that’s about it for me!
By Saturday, I just needed something to do. I’ve lost so much physical strength and now I’m feeling old injuries that I thought were healed and in the past. In addition, all of the sitting around adds to the joint stiffness and muscle tightness. I’ve struggled to remain active even though I’ve tried. I’ve struggled with my confidence through this. Today, walking and exercising didn’t feel like an option, and I used to love driving, so when I felt better by the afternoon, I went for a drive. I just drove around Steamboat Island and the surrounding areas for a nice water view drive. Little did I know that there are very few water views from driving around the area, so I just drove until I got tired, then drove home.
Monday. Today is President’s Day, and I am just fucking tired. I am so tired of being tired. I am so tired of not being able to do what I want. I decided I should go for another drive. Today, I’ll drive to the ocean. It’s only two hours away. Bear and I can drive there and walk, then we’ll come home. I had wanted a weekend getaway, but everywhere I looked had already been booked, so that didn’t work out. It is hard to feel motivated to be outside when the weather is so cold and gray, but I wanted to do something. Anything. I tell Grey of my plans, and he had the nerve to tell me that my expectations were too high. That did NOT go over well. What in the hell does that mean?! Maybe we’ve had a similar exchange before?! Hmmm, sounds familiar. That means I am still on chemo, and that I want more energy than I have. That I’m trying to plan an all day outing that is going to wear me out. That I’ll probably get an hour down the road and pull over to cry because I’m exhausted. That I want to be past this but I am not. That I am still a cancer patient on chemo.
That means that I am holding everything in and trying to be tough, but it just leads to an emotional breakdown. I don’t realize when I’m holding on that I hold on too tightly until overload and the dam breaks. Time to call Peg the cancer counselor at Providence and make an appointment. That sounds familiar, too. I think I keep saying this. Just fucking do it!
This is also the day that I tried to get Mikala to do something with me and she didn’t want to go. When pressed, she fesses up that she doesn’t want to go anywhere with me because I get tired to easy and when I get tired, I get mean. Oops. I’ve definitely got some work to do.
Image: Hey, that’s my hat! My love who keeps me laughing through this hot mess!
Empowerment means not only that I can refind my independence; it also means that it is okay to be interdependent as well. That we are not in this life alone and others are there for us, so let them be. It also means to me that I have work to do and that I am able to do this work. I can continue working on tearing down the dam that blocks the river, so that it can flow more naturally. Being human means being flawed and that is normal. Natural. Empowering.
Current Status. I am now almost two months past chemo and in between surgery and radiation. It has become harder to go back through the chemo notes and write about that process, but I promised myself I would continue this path and allow the look back to remind me of where I’ve been and where I’m headed.
Sunshine in April 
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