On Waiting…

If you spend any time reading breast cancer blogs, websites, and comments, you’ll run across the fact that none of us is comfortable waiting to hear the results of our tests. This comes up a lot because we have to wait a lot.

Let’s take my last week and a half or so:

1. I had an appointment with a breast cancer surgeon at Moffitt Cancer Center in Tampa Florida. It was on a Friday and the surgeon told me I very likely have Inflammatory Breast Cancer, also known as “IBC” — a highly aggressive and deadly form of breast cancer with a 5-year survival prognosis of between 25%-50%, and that’s WITH treatment. The “standard” treatment would be chemotherapy to reduce the size of the tumor, then a mastectomy, then removal of the lymph nodes under the arm next to the affected breast, then more chemotherapy, then radiation. So if you’re me, you find yourself thinking “why bother with treatment if my time is short and I want to live as normally, and as free of pain as I can, for as long as I can?”

2. I had to wait through the weekend and then through the first two days of the following week until Wednesday, when I was scheduled for an MRI, a mammogram, and an ultrasound. I’ll skip over the 2 hours I spent waiting for the ultrasound with no explanation about why I was waiting, but note the length of time here: 5 days before any testing began. That’s 5 days to wonder how sick I’d get and for how long. Would I die before the end of the year, or sometime during the next? How long does a woman who refuses treatment for IBC have to live? What options are there for pain management? Are there alternative treatments that work? How would my loved ones (especially my husband and son) feel about it all? Should I tell anyone, or would that forever change my relationship with them: we each change when we learn someone is terminally ill — it’s probably impossible to ignore that elephant in the room. What could I do to make it easier on my friends and family? Is this really happening to me? Until this 5-days of time, I thought I knew what it meant to be alone. It’s much more intense and all-encompassing than I’d known. It’s the kind of thing you can’t change by talking to others or trying to distract yourself. Your focus becomes identified by what you’re going through: you and death have come close enough to hug one another.

3. The MRI, mammogram and ultrasound were done on Wednesday (at the end of which I learned it’s unlikely I have Inflammatory Breast Cancer…more on that in a bit), and then I had to wait until Friday before I returned to the hospital for bone density and CT scans, which (‘natch) took all day. Lots of waiting between injections of dyes, for scanners to be free, ’til the next appointment time, and so on. It doesn’t matter that you have 3 hours to kill while in a town you’re not familiar with and you’ve got to have something healthy to eat for breakfast. (If you’re at Moffitt, you’re in a part of town where you’ll find a Denny’s and a Perkins. Good luck with the healthy eating thing.)

In brief, from my first meeting with the breast cancer surgeon it took a week to get 5 tests done which, in an Emergency Room (E/R) environment, could have taken a day and, let me be honest, when you hear you probably have IBC, it’s an emergency.

It’s now the weekend after the bone and CT scans, and I’m waiting for the results. If I don’t have Inflammatory Breast Cancer, what do I have? The MRI shows a sac full of fluid that looks like a large raindrop. I’ve studied cancer enough to know that a cancerous growth doesn’t have the smooth outline of a raindrop: a cancerous growth is jagged. That’s probably why the radiologist told me he couldn’t rule it out as IBC, but he doesn’t think that’s what it is.

If what I have is another cancer, has it metastasized? Great question! Unfortunately, we’ll need to wait until next Tuesday to find out. That’s when I’m scheduled to see the surgeon who will, no doubt, have a plan for what to do about the sac of fluid. Will it be drained, as the surgeon’s nurse suggested? If so, when? Will there be a biopsy? If so, when? If it’s an infection, will I be put on antibiotics and if so, when? And why let me go so long without them?

I’d heard Moffitt is a great facility. Well, we haven’t had the greatest start. The staff might be wonderful and highly skilled, but as a patient, I’m becoming impatient.

For now, my only bit of advice — should you find yourself in this unwelcoming part of life, is this — you can kill some (not all) “waiting time” by going into denial, which is what I’ve been doing ever since I learned I probably don’t have IBC. Hubby’s my partner in escape. We’ve found ways to distract ourselves and I’ve lightened up on the extreme healthy eating plan for now. It’s easier that way. Sometimes a pizza (with wine) is the exact right thing.

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13 Comments

  1. Hi Robin! Here I am to keep you company. Wow, what you are going through. I wish I could reach through this computer and give you the biggest hug. I don’t understand why they make you wait either, but it seems to be what they do. Thats got to be hard. You sit there and your mind spins. Hang in there my dear. Take care of you. I hope to talk to you again soon.

    Reply

  2. I was reading your blog again. (I’ve read it a few times.) I was wondering what effects of antibiotics have on you. I know they’re hard on the system, but not sure about your cancer in particular. Also, I have some recipes for juices. The website called Fat, Sick and Almost Dead. So I looked it up. Basically he has lost weight but become healthy in the process. Please let me know if you would like them. Have a great evening. Oh and by the way, nice to meet you Robin.

    Reply

  3. Hi Patricia,

    As I understand it now, I don’t have cancer and (instead) have fluid left behind from September’s surgery. The fluid will be removed today with the current assumption that there’s no cancer in it. If there is, it’s unlikely the treatment will be antibiotics (more likely a push for chemo). Based on what I believe will happen though, the drained fluid will be sent to the lab and tested to find out if it’s infected (it very likely is) and then to test different antibiotics to figure out which one(s) will be most effective at handling the infection. With any luck (not that I’ve had much when it comes to b/c), that’ll be that. Finger’s crossed.

    I’ve seen Fat, Sick, and Nearly Dead too. In fact, it’s what got me started on eating nutritionally dense foods and juicing. There’s a website connected to it called “reboot.com” which will put you through the paces of the guys in the film. I’ve tried to sign up for it (twice) but every time we get to the point where they’re supposed to email about what I’ll be eating and drinking that day, there’s no email. I haven’t debugged it yet, but haven’t forgotten it.

    Thanks for reading and being such a strong supporter. It matters a lot. It’s very nice to meet you too! Robin

    Reply

    1. Good morning! First let me say how happy and relieved I am that there is no cancer in the the fluid sac. Please forgive my ignorance, but then why the chemo? Isn’t that very hard on you? Don’t get me wrong, I’m not questioning the treatments. I just don’t understand that part. Also, I found a recipe for a drink: 2 quarts water, 1 cucumber, peel and sliced thinly, 1 lemon sliced, 1 tsp. fresh grated ginger and 4-6 mint sprigs. Mix and let sit in the fridge overnight. Very healthy. I would like to make it too. Sounds good. Thank you for letting me know Robin. Have a great day.

      Reply

      1. Hi Patricia,

        There’s no chemo scheduled and I wouldn’t allow it in any case. I might have worded my thoughts on this less clearly than I should have. Sorry for the confusion. The mint drink sounds fabulous!! Gonna give it a try next time it gets hot, hot, hot!

        big hug,
        Robin

    2. I got this off FS and ND.Veggie Juice Recipe
      Yield: Four 8oz. glasses

      Ingredients

      4 Med sized ripe tomatoes
      2 celery stalks
      2 carrots
      1 Orange (wedges) or Apple (cored but unpeeled)
      1 Lemon (skinned wedges)
      1 Lime (skinned wedges)
      Berries (optional)
      1 Tbsp Hot sauce (optional but strongly recommended)
      2 Tbsp Omega 3 Oil from flax seeds
      1 C Cold Water
      Directions

      Puree everything together in a blender.
      Add water if you want the juice to be thinner.
      The important thing is to use a blender and not a juicer as in the trailer. Why throw away all that nutritious fiber that gets extruded from a juicer? Not that I am endorsing any particular brand of blender, but I love my Vita Mix blender. It is powerful and blends anything!
      **Robin, I just use a juicer as I use the pulp anway so there is no waste. Totally, your choice of course.

      Reply

      1. Hi Patricia,

        How do you use the pulp from the juicer? Hubby and I have been talking about this for months.

        Thanks,
        Robin

      2. Hi Robin, depending on what I am making the carrot/spinach pulp can be added to meatloaf, spaghetti sauce, gravies, soups, casseroles, and the fruit pulps…well I add those to muffins, cakes or breads. I will often just eat them with a spoon. Most evenings before supper thats what I do. I will also re introduce them to my juices when blending. Another thing I wanted to mention to you is I saw a program on t.v. today with a product called the Health Master. I am looking into it. If you look it up, let me know what you think. I am interested in it. Have a great evening.

  4. Good morning Robin. I just thought I’d check in and see how you are. I realize that you have more important things going on. If you get a moment; please say hi. Take good care of you.

    Reply

  5. Hi Patricia,

    Thanks for keeping me in your thoughts. How sweet you are. I’m doing quite well, although the scare from the last month was a big one, so I’m reconsidering some options I’d previously refused. I still tend to want to avoid chemo, hormone therapy, and mastectomies because the side effects can ruin quality of life. So it’s a tricky wicket. I’ll land on my feet before too long though 😉

    big hug,
    Robin

    Reply

  6. Hi Robin, I know you will land on your feet. I am convinced of that. As you had said in an earlier post, you will embrace any changes rather than be afraid. You have given me strength and I admire you for yours. It was great to hear from you. Are you getting spring where you live?

    Reply

  7. Hi Robin, how are you? Haven’t heard from you in sometime. Hope you’re doing well. How was your Easter? Mine was quiet. Didn’t really do anything special as far as dinner (just me here) so I stayed quiet. The weather is still cold here. This morning when I woke up it was -13. Brr. Its sunny. I love the sun. I think of you everyday. Take good care of you. If you get a moment; please say hi. Enjoy your day.

    Reply

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