It just gets weirder and weirder...

So, that was a truly weird experience. On Tuesday, they prepped me for radiation, which I start on the 14th with a trial run then the real deal the following day (and all 28 working days after that, six weeks in all. My simulation included blood work and PET scan as well. The day started with nothing to eat after 7 am, water only. Not bad, since breakfast and coffee can still be had earlier! For the blooded work, they agreed to access my port. Probably not a great idea, since it hurts more than the arm if you don't use the numbing cream ahead, which I didn't think to do. No matter, since it didn't work. And it really does hurt to have someone jab a needle into your chest. And it is a jab. The compensation is that it always works, except when it doesn't. You might remember the crazy moving port story, when the other end of the port eased its way out of the jugular, up my chest and over the a vein in the other side. Then, when we had the delay between chemo and surgery, I forgot to get the port flushed. S, at my last oncologist visit, the nurse tried it and, after a disappointing moment f no blood return, I raised my arm and it worked. Seemed like a triumph, except it was just an unnecessary pain, since we still can't use it. So now came one of those difficult moments. I had to decide whether to let her try again. Now, you would think, after all I've been through, this would be a no-brainer, a minor amount of pain, no biggie. But I hesitated. Another stick right in the same spot, and unlikely to work. The nurse was all sympathy, confessed she hates needles, and offered to see if they would agree upstairs to collect the samples when putting in my IV (can't use port for pet scans.). But I wanted to see if we could get the port working again, do I gritted my teeth and told her to go ahead. Another puncture (ow) and no blood return. Damn! Ah, well....now I'll have to decide whether to go in for a port flushing procedure. This is all in aid of a possible need for more chemo after a recurrence that no one wants to exactly talk about, (but is statistically quite likely.) Who wants to even go there? After this fun experience, I headed upstairs for the PET prep in the now familiar little room. IV went in fine, they took the blood sample, and I started to drink the yummy red radioactive glucose drink. They showed me the extra blankets and, after they left, I wrapped up in three of them, made a fourth into a pillow for my iPad, pulled the other chair up for me feet and watched reruns of law and order criminal intent for an hour. Very cozy. Finally I went into the scan room, where they also make the mold for radiation. Obviously, they don't want to zap you willy nilly, so a mold of your body is made to lie in during treatment. They mixed two chemicals and poured them into big plastic bag, and then smoothed the mixture all through the bag by squashing and smoothing it on the counter. It was such a physical process, like rolling out bread dough, and they talked themselves through getting it just right. I was surprised by how unmechanized it was. I thought the same thing as they lay me on the scanner table on top of the bag. With one of them in each side, tucking the mold around me and taping it to my skin, shifting me back and forth and debating whether they were within the scanner boundaries, I felt like a chicken being prepared for cooking by two highly skilled chefs working on a dish that still required discretion and discussion to get just right. This impression was heightened when the doctor arrived and discussed the exact placement of the field. Apparently, there are options. Physics was to arrive in a bit to also help with this. I know enough about quality systems in healthcare and how important these kind of procedures, open discussion and debate help prevent dreadful mistakes. I am very reassured whenever I encounter a checklist, safety, or privacy procedure (they have achieved 100% compliance with staff asking you to spell your name and give date of birth before talking to you, for example.). But I have to admit that some small and scared part of me misses the authoritative, doctor-as-god approach. I'd never go back to that and its terrible risks, but it is scary to lie there while a part of your brain listens to the discussion and wants to ask " wait a minute...don't you KNOW the right way to treat me???". They are doing the right thing, but it's creepy to be reminded that this can still be messed up. Anyway, trussed up like a chicken and unable to move, I waited for the mold to harden, the doctor and techs making marks on my chest in pen, and placing sticky numbered wires to my chest. Then, finally, the scan. 24 minutes of sliding my head and lower chest in and out of the tube. I relax and think of myself as falling through the universe, strapped to this machine, pinned the earth by gravity and we all hurtle through space. It was entertaining, and helped the time pass quickly. Just when i thought it was over, she announced, "I'm going to have to stick you in four places." Oh, Great! How anyone chooses to get a tattoo is beyond me. Four simple dots, three in the torso and one in my head. Four needle jabs that felt deep and painful. And people sign up to get an entire dragon? Now, we wait for the results that tell me if cancer can be seen in the neck lymph nodes. Worry waits for me at every corner, but I am getting better at slipping out of his clutches and moving on. Meanwhile, I continue to heal from surgery and chemo. The skin around my scar is still red, numb in spots and hypersensitive in others and adhered to the scar tissue under it where the muscle was carved away. I can massage it very gently to stretch the adhesions so the skin moves normally. This doesn't hurt, it's just boring and slightly creepy. I have almost achieved full range of motion in my arm, although there is stiffness at the far end of the range in many directions. My toes are still slightly tingly and my legs ache sometimes when I walk. I am still breathless when I climb stairs, but I recover quickly. I can work almost a full day, and I feel cheerful and energetic much of the time. When I go to the LiveSTRONG class at the y, it's clear I am doing extremely well compared to others (and these are the people able to at least come to the gym....not the worst off cases.) My family continues to be wonderful. My parents have made the 3+ hour drive from Connecticut countless times, made soup and other food, my Mom has come to doctor visits, and they've even paid for many little things along the way. More than this, they have managed to remain reasonably calm and rational in the face of a terror and suffering only a parent can understand. Thank you, Mom and Dad! My sister Devra has been my mainstay. We have grown even closer with this and I don't know how I'd have done this without her to talk to. I really do have the best sister in the world! My kids have done as I asked and gone about their college lives with a clear intention to do their best. Both have stayed cheerful and unafraid, loving, sympathetic and humorous. Margaret in particular has been a great source of love and strength. Amazingly mature and incredibly kind, she texts and calls regularly and always brings sunshine with her. And then there is Steve. I can't really recommend cancer as a strategy to re-bond with your spouse when the kids move out (too many downsides!) but it worked for us. Not that we were in trouble, but we are now closer than we've been in many years. It's not easy on either of us that he's so interested in health. He's not always in agreement with my doctors. Although he feels strongly all decisions are mine to make and his to support, I take his opinions seriously. We decided early on not to have him attend any more doctor visits, because it made both of us crazy. But he has spent countless hours on the Internet, reading and talking with me to help me make good decisions. Exhausting for both of us, but may well save my life! All the debate and the unwillingness to simply follow "expert" advice has definitely increased my stress levels at times. But it may also have saved my life. The vitamins, sun exposure, the exercise, the diet changes, all both increase my odds of surviving, and make the short-term effects less devastating. Steve has decided I will be fine. He just believes I'm going to be okay. Sometimes, this is irritating, because I get freaked out and want him to be, too. Except, of course, I don't want that at all! I asked him at the beginning to be positive, and he has done so. He simply can't stop seeing me as basically very powerful and competent no matter what. This can tick me off when I want to be coddled and really need to be pushed. But his belief in my underlying strength has been a great gift to me. This is no time to think like a victim, and I'm glad I chose a husband who basically doesn't think I need protection., even when I need support. Don't get me wrong; Steve has waited on me hand and foot, cooking all the meals, walking the dog, shopping, cleaning, you name it. He just quietly does what needs to be done, while encouraging any efforts I make to do for myself. This is exactly what I need. Most importantly, he has learned to just hold me when I cry, or to,listen when I rail against the struggle. He doesn't judge or try to cheer me up, knowing the storm will pass, that I need to feel the grief and rage. And then he repeats "You'll be fine, Babe." and I will be.