An overwhelming night at the oncologist’s office

I’m so sorry for the lack of updates in this last month of no posts! The truth is that there hasn’t been much to share. It has been five weeks since surgery, and my range of motion is much better, pain is gone, and I’m feeling great.

However, the wait was terrible. I was told that it was necessary to wait until I was healed from my surgeries before continuing with doctors appointments and treatment. “Antsy” is not a strong enough word for what I was feeling. I was so very ready to get to the next step and have a plan for treatment.

This past Thursday, things finally ramped up. I had physical therapy in the morning, and I had an oncologist appointment in the evening. I started the day so excited to be back in action — finally doing something! And, PT went great.

However, I ended the night feeling so overwhelmed. My oncologist appointment was less than stellar. “If you can’t say something nice, don’t say anything at all” comes to mind. This was my first non-Community Health Network hospital to visit since the beginning of this adventure, and I was shocked at how different my experience was. It was terrible. From confusing directions (and no one walking us places, unlike at Community where they take you where you need to go!) to less-than-friendly hospital employees, it didn’t feel great right from the start. Then, my parents and I waited for an hour before being taken back to an exam room, and then waited another hour back there.

And here is the kicker… THEY FORGOT US. I don’t know how you forget a patient who has an appointment and has checked in. My appointment was at 4, and when I finally stuck my head out of the room to look for the nurse at 6, she was already bundled up in her winter coat and hat, clearly ready to leave. Her response: “Oh, I’m so sorry. I kept meaning to check in on you but got side-tracked.”

So frustrating. After that, the doctor came in. He spent a full hour with us, and he helped me understand all of my treatment options. More on that below. He was just as described: a mad scientist. But I so appreciated that even though we didn’t start until 6, he stayed with us until 7, sharing a ton of data.

After sharing all of this with us, he dropped a bomb on us. Something that I did not understand before that night was that I have to be treated at the hospital where the oncologist works. Ok, as I typed that, it seemed obvious. But in my head, and in my parents’, we thought it could work like a prescription. If this doctor decided on a certain treatment, he could order it done at any cancer-treating hospital. Not true.

So, I waited five weeks to go see this guy, and he ended the appointment by saying, “I really don’t think you want to be treated here. You should find an oncologist closer to home. Good luck.” No offer to get me connected to someone else, and no direction on what to do. Even when I asked him what I should do, he kind of shrugged his shoulders and told me he could only help if I wanted to be treated at his hospital (in downtown Indy).

I was a wreck on the way home, swaying from being mad at everything to crying over everything (seriously, so not necessary to yell at my parents because they wanted me to choose where we would go to dinner… yikes. Sorry, parents. Thanks for loving me through the ups and downs!).

The next morning, I was feeling a lot better. Amazing how some sleep can help you process things! I called three hospitals, including two that are in the Community network, and I was able to get an appointment for MONDAY! I expected it to take much longer. The kind lady that I spoke to informed me that she always tries to get patients in within 48 hours, and she APOLOGIZED that it would be a little longer because of the weekend. Seriously, my love for Community is now bordering on obsessive. They have taken such good care of me. My experiences between the two hospitals could not be more extreme.

I’m in a much better place emotionally now. I’ve had time to process my treatment options with my family and some close friends. I’ve had time to digest some of the data, and my natural positivity has soothed some of the chaos.

I would appreciate your prayers for several things:

• Guidance for choosing the right treatment
• Peace for me and my family once that choice is made
• Total healing, and that I never have this stupid cancer again!

I love you all! I will have more updates on Monday when I meet with a new doctor closer to home. If you are interested in the nitty gritty of what I’m experiencing (especially if you are going through this too), read on!

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Physical Therapy

I spent the morning at Community North’s physical therapy office. The PT I was assigned to is wonderful. She is my age, and I can totally see being friends with her in real life if we had met some other way.

My appointment lasted about an hour and a half. We talked through my surgeries and how I was feeling. She explained how the lymph system works and what happens to cause lymphedema (the swelling of my arm due to having no lymph nodes there). I am at risk for lymphedema the rest of my life.

She measured my flexibility and the circumference of my arms in several places. Then we sat down and looked at her computer to compare the differences between my left and right arm. There were definite differences between the two, but nothing too crazy considering I’ve had two major surgeries to my right arm.

I learned several exercises to help get my full range of motion back, and she took measurements for some compression sleeves that will be ordered for me to wear when I work out, travel by plane, etc.

I will meet with her once a week for five weeks. She wanted to see me twice a week, but since I have to drive a ways, she said once would be fine if I promised to do my exercises at home consistently.

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Oncology

Since I already went over the terrible experience at the office, I won’t rehash that now. I am also going to be careful about putting a ton of numbers and opinions in here, because I’m learning that every resource about melanoma treatment is passionate about different options, and even the data appears different depending on the perspective of who you talk to. I am by no means an expert, so I’ll just give you the basics of what I learned. And honestly, I had read most of this online already, but it was helpful to hear it from a live person who explained some of it in terms I could understand (although sometimes he was using terms that seemed to come from a different language!)

From what he said, I basically have 4 options.

#1: Do nothing. This is often called the “Wait and Watch” method. You have tests done every three months to see if any tumors have popped up in your organs. There is a 50% chance it will return (His exact words: “It is a flip of the coin”). When it returns, it is likely Stage 4, and there is very low likelihood of surviving. However, if it doesn’t come back, you have avoided all of the terrible side effects from treatment.

#2: Interferon. This is a treatment that is passionately debated. I had to stop reading melanoma forums, because people are just as mean on those as they are on sports forums and any other type of less important forum. Seriously though… people can’t even be nice when discussing cancer treatments? Sorry… I digress.

Anyway, Interferon has been around for 30 years. According to the doc, there is a 10% chance it will stop my cancer from returning (ok, if you are a medical person, you will know that’s not a perfect explanation… but the real explanation is so confusing that I’m going with that for my own sanity). He said that it is basically increasing the odds to 60/40, rather than 50/50.

Many people say that 10% extra isn’t worth it, because the side effects are horrendous. There is a full month of daily infusions with extremely intense flu-like symptoms. After that month, there are 48 weeks (yes, 48!) of lower-dose injections. Most people are able to get back to almost-normal life during that time, but they are still a little tired and nauseated.

#3: Ipilimumab. Yeah, good luck pronouncing that. I was pretty impressed with the doctor and how it rolled off his tongue. The more commonly known name for this drug is Yervoy. At this point, the doctor chuckled and said, “Yeah, the best way to not be confusing is to give every drug two names…”

Yervoy was just approved for Stage 3 Melanoma in October. However, it has been tested for years through clinical trials, and it has also been approved for a while for Stage 4. So, it’s not really new, but it is much much newer than Interferon.

If I am understanding correctly, this drug has a lot of potential upside, in that it can be easier on your body and you have way fewer treatments. You still don’t feel great, but most people are able to tolerate it better than interferon. And, studies show Yervoy can help some people have a longer time until they relapse. I don’t remember the percentages he gave me, but to me it sounded like Yervoy helps about as many people as interferon does. So, it helps people and is easier on your body. Sounds great, until he told me about some of the less common side effects. Heart failure. Liver failure. Kidney failure. Even someone in one of the studies who died from a rash. How on earth do you die from a rash?!  I’m sure these life-threatening side effects are rare, but it is good to take them into account.

 

 

 

#4: Clinical Trials. This doctor had a clinical trial coming up that compares Interferon with a drug similar to Yervoy (Keytruda). It would be several months before we get started. And, I would have to be treated at his hospital downtown. After all of the processing I’ve done with my family, we have decided this is not the right route for me. I was completely set on doing a clinical trial, but the more I thought about what it would entail, it just isn’t right for me at this time.

As you can see, there is nothing out there that gives you some fabulous guarantee, like “90% of people who get this treatment are cured!” That just doesn’t exist yet (although there are tons of studies being done, and I’m convinced it is coming in the future… now I just need to get rich so I can donate my money to these research efforts!!).

As I said before, it is overwhelming to learn all of this and have to decide what is best for me. I would much rather have a doctor tell me what to do, but unfortunately it is up to me. I am more and more grateful to have family and friends that are supportive and who help me process.

I will hold off on sharing what I have chosen until after my appointment with the new oncologist in a few days, just in case I change my mind!