Contingency Plans

Little by little I am starting to get a sense of where this treatment plan is going. Baby steps.

I saw my oncologist, Dr. Robison, early this morning before chemo. I had approached this check-up with no expectations. Quite frankly I just assumed it would be a quickie visit: Listen to lungs, feel my belly, take notes on the extent of the side effects, girl talk for a bit, then send me on my way. I was partly right but we did have a productive conversation about future treatment.

In more recent previous posts I had talked a little bit about the frustration I was feeling over not feeling like I was progressing. There is no finish line, no end date, no goal to strive for other than keeping my chin up and staying the course. After my visit with Dr. Robison I left feeling relieved and at ease with what may come even though it is still very uncertain.

I am generally a planner. I like to have an idea of what is to come. With that in mind, I am also fairly adaptable and as long as some sort of plan is in place I can roll with that plan being altered. Bottom line, I do not want to feel stuck or stagnant.

We spoke openly about what tricks she may have up her sleeve for me in the event that the Taxol/Avastin combination is no longer best the course of treatment. In a nutshell this is a tentative plan of attack:

Scenario #1: We take a CA-125 bloodtest next week and the results show a decrease

  • Stay the course with Taxol/Avastin.

Scenario #2: We take a CA-125 blood test next week and the results are unchanged/slightly increase (ex: by 20 or so)

  • Still stable, stay the course with Taxol/Avastin.

Scenario #3: We take a CA-125 blood test next week and the results increase by about 50 or more –> Conduct a CT scan to get a visual on what is actually happening. Is the disease unchanged or progressive?

  • If we do a CT scan and the imaging shows that the tumors are unchanged and there is no new progressive disease we would be inclined to still stay the course with Taxol/Avastin as stable (no new growth = good)
  • If we do a CT scan and the imaging shows progressive disease (new tumors/growth) we may move to a different type of chemotherapy called Doxil.

So what is Doxil you ask?

Doxil is a platinum based chemotherapy called an anthracycline used commonly in recurring low grade ovarian cancer. The American Cancer Society was kind enough to explain this online in plain English for me. This just means that the drug targets enzymes involved in the replication of DNA. Its job is to destroy the cancer cells formed by the botched DNA. Like Taxol, it is not exactly a targeted therapy so it can also destroy normal tissue. One of the benefits of this drug is that it stays in your system a little longer because it is designed to go almost undetected by the immune system. This allows the drug more time to do its job. Or so I read…I am no means an expert on this drug aside from a basic google search.

Based on what I have been told by Dr. Robison and Rosa, my nurse, Doxil is also pretty tolerable. The most common side effects are skin rash (tinging/burning/flaking of the skin on palms of hands and bottoms of feet) and mouth sores. These side effects worry me because I have had variations of both in the past and it is not pleasant. BUT there are always risks with any medication.

IF we decided that a switch to Doxil would be the next step, and it may not need to be, the infusions would only last about an hour once per month. The only other downside is that I would need to be the most patient patient. I was told that they do not typically see any immediate impact on the tumor marker for the first few cycles. It would be another exercise in trust.

The other option that I inquired about is immunotherapy since it is being discussed at length in health media as of late. There is an immunotherapy trial going on at WIH currently but Dr. Robison did not feel that this particular trial is my best next step just yet. She is not ruling it out for the future if it is appropriate for my circumstances down the line.

A lot of information to take in, right? Remember, the plan may not even change! I am just relieved to know what my options are and how I can mentally/physically prepare for what is to come. I really appreciate that my doctor is always one step ahead of me, keeps me informed, doesn’t dismiss my concerns, and is honest with me. That is so important in a doctor/patient relationship.

After the appointment I headed over to the infusion center to see my girl Rosa for Taxol. One of my cancer crushing buddies was kind enough to come by with a HALF DOZEN Allie’s Donuts. If you are from the Rhode Island area- you know what I’m talking about. It’s sugar crack amazing heaven in a box.

Thank you for the visit and treats Jocelyne!

All in all I am feeling ready to move forward no matter what is to come. I find comfort in knowing I have options. Stay tuned for my create your own cancer adventure as we will know more next week.

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Hoping for no-mo’ chemo

Happy Sunday supporters! This is a long one so grab some coffee and get comfy…

I have lots to catch you up on since I last wrote. I see that many of you clicked the link in my last entry and read the article that painted a vivid picture of what it is like to be battling cancer. I thank you for reading it as I found it to be pretty insightful.

Doctor’s Update:

On Friday I went to the doctor for a routine pre-chemo exam. They did a pelvic exam for the first time in a few months and luckily, everything looked normal as far as she could see. Dr. Robison and I discussed the next steps from here and what I can possibly expect:

  • Next Thursday, April 18th will be the beginning of my last scheduled cycle of chemo (HOLLERRRRR!). I will have chemo on Thursday and Friday of that week and my last scheduled treatment will happen the following Thursday, April 25th. Stacey, one of my long time best friends/she-wolf, is kindly taking the day off from work to share my last treatment with me. Maybe I should bring some benedryl with me so she can take a nap too because lord only knows I will be passed out the minute that Benedryl IV is hung.
  • On Friday, April 26th I’m scheduled for another CT Scan of my chest, abdomen, and pelvis.
  • Following my CT scan Dr. Robison will meet with tumor board. They will look at the trends in my CA125 levels, compare my CT scans to make sure nothing new has surfaced, confirm that I do not need any additional chemotherapy, and agree on a course of action for my aftercare.
  • A week after my CT scan I will again meet with Dr. Robison to review the decisions that tumor board have made and HOPEFULLY if all goes well, schedule a date with the operating room to remove my intraperitoneal port. Normally this can be removed in the office. Because I have had complications with my intestines and scar tissue in the past, she would prefer to do it in the OR to avoid further complications.

I am very excited to see the end of chemotherapy. I know that I am not out of the woods yet and that I cannot even say that I’m cancer free for another 5 years but it is encouraging to even have a glimmer of hope that chemo is done. I am praying that my CA125 levels continue to drop so that tumor board can feel confident about moving me onto aftercare. A positive outlook has carried me through this experience and has worked up to this point. I am still hoping for the best but preparing for the worst. It will be a punch in the gut if my doctor tells me that they found something abnormal in my CT scan but for my sanity, I can’t go there in my head yet. As far as I am concerned at this moment in time I am going to be okay and I WILL move on to aftercare damnit!

So what is aftercare you ask? Great question! The aftercare option that my doctor is going to pitch to tumor board is immunotherapy called Avastin. Research has supported promising results when treating low grade tumors (like mine) in ovarian cancer. In order for cancer to grow and spread, it needs a blood supply and feeds on vascular areas of the body. Avastin is an antibody that targets the protein responsible for facilitating access to the blood supply. Avastin helps prevent this protein from “gettin’ the goods” so to speak. Non-medical translation:  if cancer was a vampire trying to suck my blood, Avastin would drive a sharp wooden steak into its heart. My infusions would only be 30 minutes long every third week for a year and it is known to be well tolerated by many patients. Not too shabby.

Gimpy Leg Update:

I’m getting stronger by the day. Just a few months ago my left leg was so messed up that I couldn’t even cross my legs without physically picking up the leg with my arm. Now I am officially walking up and down stairs! A major milestone for me in this portion of my recovery. I bet my occupational therapist would be incredibly proud. At one point in time (even recently) I would step up onto the stair and in my head think “ok, go!” but the message wasn’t  making it to the leg. It’s kind of scary when your brain is disconnected from your limbs. I’m happy to see that the message is finally getting there (by Harry Potter owl, naturally).

I have seen my personal trainer twice now and have worked out a handful of times on my own. When we last met and debriefed he told me that he was really blown away by my progress and ability considering the extensive nature of my surgery. He said that he has worked with many women after having C-sections that lack the type of abdominal strength that I have. He thinks that I have the endurance and strength for a single one hour session once per week instead of two half hours. Our goal is to workout together once per week and I am to work out two other days during the week. Eventually we will work up to adding a 4th day where he recommended I do yoga (I miss yoga and love this idea).

I am so happy that I made this investment in myself. It has given me so much more energy and more long and short term goals to work toward. Goal setting is so critical when you have cancer. The smallest of goals can be the most satisfying. A day after my hysterectomy my goal was to take three steps with the help of two nurses, now I’m walking up and down stairs, working out with a personal trainer and on my way to running again eventually. Amazing.

In related news:

In the last few days I have noticed that my ankles are a little swollen. The right slightly more than the left. Both have very small varicose veins forming (I’m too young for this, ugh). Pre-cancer I’d just elevate my feet and think “Whatever, it will work itself out”. Now I can’t help but to agonize over what could possibly be wrong with me. Is it an effect of chemo? Did I mess it up while working out? Are cancer cells causing this to happen? Are they going to have to amputate?! (ok, ok, maybe amputation is a BIT of an exaggeration but you get it). I’m going to show it to my nurse this week and see if I can get some more information. Praying that this is nothing.

In other news:

I’m beginning to lose my eye lashes and eyebrows. I’m not torn up about it but it’s super weird. I looked into fake eyelashes at CVS yesterday for weekend nights that I want to dress up a little. They sell all different varieties, many are far too over the top for my liking, so I haven’t yet decided on a pair that suits me. On top of that- they sell the glue seperately for a whopping 7 bucks! How’s that for some BS? Needless to say I left empty handed while my four remaining eyelashes hanging on for dear life.

In other, other news:

I would like to proudly acknowledge my college friend/former roommate Ashley (Das) Emmanuel for raising a whopping $1650 for St. Baldrick’s Day to benefit children with cancer. She is looking beautiful with her velvety bald head. Her husband Greg even upped the ante by offering to shave his beard in the style of the highest donator’s choice! I love these two and am honored to know them.

dasbald

That’s all for now, enjoy the rest of your weekend (especially those lucky bastards in Massachusetts that have tomorrow off for Patriots Day. Remind me to rub this in your faces when I have Victory Day off in August and the rest of you non-rhode islanders have to work).