Once in a Blue Moon

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I’m changing my handle from “Queen of Side Effects” to “Blue Moon”. It seems every time my doctor talks about side effects that happen only once in a blue moon, they happen to me. And it works well with my last name (Blue Moon Knight). So, yesterday I experienced something that only happens once in a blue moon (in 2% of patients, to be precise).

After working through insurance delays, and lab test, and a surgery to insert a MedPort, I was set to start Taxol, the iv chemo that would be my 3rd line of treatment. 

I arrived at the clinic and went back to the lab area to have blood drawn. I was happy to be able to access the MedPort (more on that procedure in the next post) and give my veins a break from the constant pokes. This is where the day started to go wrong. They could flush saline into the port, but no blood was coming back out of the port. We tried all the tricks-raise one arm, raise both arms, look left and cough, look right and cough. After about 5 syringes of saline, I was sent back to the infusion room to see if the nurse would have any better luck. I ran through all the tricks again, but I drew the line at turning cartwheels. No blood. So, it was time to inject something to break up the clot. Unfortunately, we needed to give it 30 minutes to work, so it was decided to use my arm for the blood draw after all, preventing further delays in starting the IV. 

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At the end of the 30 minute wait, my friend stopped in and gave me some good luck to get the port flowing. It worked and we were back in business! I was hooked up to saline and a variety of pre-meds (Benadryl, steroids, etc) were given to help reduce the side effects of the Taxol. All was going well, and soon I could smell the chocolate chip cookies baking!! Yes, you heard right. Another friend was there volunteering in the clinic, and part of her duties include baking cookies! I got the first one hot out of the oven! I’ll take the silver lining wherever I find it.

A couple hours into the appointment, it was finally time to add the Taxol to my IV. Immediately, my day turned upside down. I felt the drug the instant it hit my bloodstream. Suddenly, everything felt wrong. Thankfully, Andy was there to get the nurse, because I couldn’t function. Within moments, I was having a severe allergic reaction to the new chemo. It’s almost impossible to put the experience into words. I felt heat and pain spread through my body. My heart rate skyrocketed and my blood pressure went out of control. My face turned hot and red and I broke out into a terrible sweat. I was in agony, throwing up, unable to breath, open my eyes or answer questions. I’ve never experienced anything like it before (and hope never to again!) I had three nurses adding stuff to the IV to counter the reaction. I was given oxygen. The doctor suddenly appeared by my side, rubbing my arm, reminding me to breath, asking me questions, and reassuring me that I was going to be okay. My mind was racing almost as fast as my heart. Now what? If I can’t tolerate this treatment, what options do I have left? All of it was completely horrifying. 

Gradually, the meds they gave me started to relieve the symptoms and I was feeling better. They mentioned that we could try the infusion again, at a slower pace, but we all agreed that it wasn’t worth the risk. The reaction the first time was dramatic enough and I wasn’t ready to experience that again. Ever! 

The doctor eased my fears about what we would do next when she explained that my reaction was to the other drugs mixed in with the Taxol. Luckily, there is another version of Taxol which does not contain the same mix. She would switch me to that. Of course, that means one more delay in treatment, pending insurance approval and a holiday weekend. I am now scheduled to start treatment next Tuesday, meaning I will have gone without treatment for over a month. It is frightening to think of what the cancer is doing without anything to fight it, but I am hopeful that the next infusion goes much more smoothly, and I can get back to kicking cancer’s ass. 

In the meantime, Andy’s company gave us two tickets to the Packer game tomorrow night. I am super excited. I’m a lifelong Packer fan who has never been to Lambeau Field. Nothing is going to make me miss this game! Bucket List item-Check!

Changing Course

It has been a summer full of adventure. Some ups and some downs, but overall, a pretty good summer. Amid doctor’s appointments and pills and side effects, we managed to squeeze in a big road trip West, State Fair, Ren Faire, Girls Rock and a couple camping trips. We also started a butterfly garden! This is life with metastatic cancer. You never know when, or where, disease progression will hit. Take every opportunity to take the trip, see the friends, tackle the bucket list. Live fully, in small increments (between naps). Things may change quickly, putting simple things out of reach. 

My first sign of metastasis was a year ago, when fluid filled around my lungs. Chest tubes and Ibrance took care of that for a few months, then the cancer moved to my pelvis. A second drug, Xeloda resolved those problems and I had a few healthy months. In May, I started having new issues in my abdomen. My appetite was terrible, complete with GI issues and a swelling belly. I told my oncologist before our big trip out west, but CT and pet scans showed stability, and she said “take the trip”. I knew in my gut, though, that something wasn’t right. I’m tuned into my body, now more than ever, and I always know something is wrong before any tests confirm it.

July 5th, we loaded up the camping gear, and aimed west with a loose plan. We saw the Bonneville salt flats, and ran fast over the crunchy surface. We went to Crater Lake, Andy’s favorite National Park, and dipped in the unworldly, pristine water. We made it all the way to the pacific coast, where the girls floated in salt water for the first time. We walked among the giant redwoods. Heading back east over twisty mountain passes, we stopped at “Borden State Park” to get to know Adventure Trio and share travel stories around the campfire. Kaylei was the bold one who jumped off the waterfall. We saw the Tetons. We lingered in Custer, SD, where Michelle’s hospitality at Chalet Motel was a warm and welcoming step back in time. We explored caves, roamed with bison and saw the badlands again. We covered a lot of miles. 5,200 miles, to be exact (no breakdowns-well, for the truck, anyway. The kids may have had a few…)

Back home, we had a few days to re-pack for a weekend of camping and the triathlon where a new batch of brave cancer surviving women (Hey Team Phoenix!) became triathletes. We were there to cheer and help take pictures for the team. That was how our July went. I was making the most of everything, even though I was feeling worse and worse. By the Sunday morning of the triathlon (July 28th), I was ready to go to the hospital. Our 5:00 alarm wasn’t going to get me moving. I sent everyone ahead, took some pain pills and caught up in time to watch the race start. Packing up camp was exhausting, but with help from the family, I made it home to unpack. I re-packed  again. This time, it was my hospital bag, an all too familiar process now. 

After several hours of tests, and waiting (mostly waiting) in the ER, I was told I could either leave and let my oncologist order a paracentesis (a procedure to drain fluid from around the abdomen), or be admitted and do the procedure the next day. I couldn’t have waited much longer, so I was admitted for a long, uncomfortable night in the hospital.  I did have a few lovely visitors brighten my mood.

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As the fluid started draining, I could feel instant relief. I could breath better, the nausea stopped, the pain in my spine faded, and I started to feel better. 4.2 Liters of fluid was taken. I’m not sure where I kept it, but I know why I felt like I swallowed a bowling ball and looked pregnant. It was nearly twelve pounds of fluid.

In the hospital, I stopped the oral chemo (it didn’t work…) I would meet with my oncologist to determine my third line of treatment. She went to tumor board with my case and settled on a hormone blocker with another oral chemo. In the meantime, to my shock, the fluid started building with days. Before I could start the new treatment, I was back at the hospital for another paracentesis. This time they drained 2.5 liters (just 2 weeks after the first procedure). 

Friday, Aug 16, I had a few more tests and a consult with the oncologist for the new meds. She entered the room with news that we were changing course. The pills she wanted me on would not work fast enough given that the fluid had came back so fast.  We needed a more aggressive treatment. She told me it was time for IV chemo again.  This was a day I was hoping would be years in the future. IV chemo is usually reserved for late in the game when more aggressive action is necessary. My oncologist assured me that I could go back to try the pill combo once I stabilize. We also discussed Foundation One testing, which could be helpful in tailoring treatments to my needs.

I left the appointment with a lot on my mind – side effects, hair loss, being tethered to weekly appointments. I packed the truck up and headed to the family lake house to relax and prepare for this next step. I missed lake time last year for the first time in my life, in exchange for 6 nights in the hospital with chest tubes, so I wasn’t missing lake time this year! It’s been nice taking a minute, but I’m ready to face the next treatment in hopes that it resolves the fluid and pain. 

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Thursday, I have a small surgery to place a port in my chest, so the chemo drugs don’t damage my veins. Then Friday, I have my first of the weekly Taxol infusions. Weekly treatments limit my wanderlust, so I’m happy we got another long trip in before starting this regime.  Let’s hope this one gives me (a lot) more time. 

Travel has taught me a lot about serendipity and changing course when needed. I trust that my doctor is guiding me in the right direction to get back on the road I want to follow. 

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Health Insurance Blues

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I have a love/hate relationship with my health insurance company. It is a necessary evil. Without it, I would be way beyond medical bankruptcy. With it, insurance providers control aspects of my health care that should be between me and my doctors. There’s not much I can do about it. In my invincible 20’s, I thought I didn’t need health insurance. I was living a very healthy lifestyle. I ate well and got plenty of exercise and sleep. I was healthy. I still am healthy, actually, except for this one thing….

As I got older, I realized I needed insurance. Now I know how lucky I am to have good health insurance. I also know the frustrations. Insurance issues are a common problem in my network of cancer patient friends. Chemo and surgery are being delay, or worse, denied by insurance companies. I understand that medical costs dictate some things, but it hurts to see women who can’t get the life-saving treatments they need because insurance companies won’t pay. The added stress dealing with insurance issues and finances is the last thing a cancer patient needs. Stress kills.

Medical costs with a life-long illness are mind boggling. I stopped adding up expenses after my first year of treatment. I left off around $600,000. Since then, I’ve had 4 more surgeries, several scans, tests, and shockingly costly chemo meds. I’m guessing that by now I’m a million dollar baby. Luckily, My insurance has covered most of my medical bills without too many headaches. This makes my current argument more frustrating. 

Last night, I tossed and turned. I was hit with a panic attack. I don’t know who dropped the ball. Somewhere between my cancer center, the pharmacy, and the insurance company, my chemo meds did not arrive on my doorstep in time for me to start my current cycle. My loving husband is much more calm and cool than I am.  He’s better at handling long waits on hold and repeated conversations that go nowhere. He has spent hours on the phone every day this week trying to get my pills for me. For some unexplained reason, the pharmacy claims we had a change of insurance and did not approve my meds. Our insurance company did not change. We did upgrade our plan as of the first of the year with a lower deductible and co-pay (still trying to avoid medical bankruptcy). The pharmacy already sent one round of pills in January, so I don’t know what the issue is. I’m angry because nobody informed me that there may be an issue with my pills. It’s my third cycle of pills, nothing new or unforeseen. 

I was supposed to start taking them on Sunday. Now it’s Wednesday, and I’m still waiting for the hospital to get a pre-authorization for the insurance company. (And my cancer clinic is closed today due to weather). In the overall scheme of things, missing a week of pills should not have a profound effect my health, I’ve been told. That’s hard to wrap my head around, though. I’ve had a rapid, positive response to this new med after only two cycles, and the delay is messing with my head. Friends have said that I’m lucky to get a nice break from side effects. True enough. Side effects suck. But I can’t help but fear that the delay is giving cancer a chance to regain a foothold. This is not something I should have to stress about. If everyone had done their jobs and got my cancer meds to me on time, or at least informed me early enough that there may be a problem so we could have started leaning on them sooner, I wouldn’t have a problem. 

I’ve had a rough seven months dealing with the effects of cancer metastasizing around my lungs and abdomen. The first line of treatment did not work and my symptoms were coming back. By fall my shortness of breath and cough started up again. The fluid around my abdomen worsened, and I had pain and a loss of appetite. Over the holidays, I lost weight that I didn’t want to lose. I was exhausted, and generally feeling ill, weak, and frail. After two rounds with my second line of treatment (the pill I’m currently waiting on), these symptoms started to improve. The cough went away. My gut no longer felt like I had a bowling ball in it. My appetite improved. The meds are working. I want my meds. I want my health.

Maybe I’m just cranky because the windchill is 55 BELOW zero.  

Hair Raising

Literally.  Watching hair grow.

Because I had too much time on my hands last year, and not much energy, I started taking daily selfies.  Watch time fly and hair grow as I document the rapid changes that took place over the past year of cancer treatment.  When I first knew I would lose my hair, I let my kids cut it short and we donated the ponytails.  Then we added some color.  Soon the razor came out, and it was gone.  Next, a fabulous Henna Tattoo.  And, finally, one day in July, chemotherapy was over, and the long slow process of raising hair began.

Comedy of Broken Pieces

Enough already! The past week has been one problem after another as my body breaks down from the strain of cancer treatment. It’s like the classic example of the driver, breathing a sigh of relief as they near home after a long drive, and then, minutes from home, they get into a car accident.

I was breathing that sigh of relief near the end of radiation, ready to be at home with a new chance at life. I am more than ready to done with doctors and hospitals and all things cancer. My body tells me otherwise. The effects of treatment keep popping up to remind me that I can’t move forward as if nothing happened. It is going to take more time and effort than that.

Monday I met with a specialist to try to find a solution for recurrent UTIs, which are exacerbated by chemotherapy-induced menopause. Tuesday was my final day of radiation, a milestone worth celebrating, to be sure. I brought a dozen donuts to St. Luke’s radiation oncology department. It was a lovely day, and I was thrilled to be done with the 7 weeks of daily trips to St. Luke’s. There were plenty of hugs and high fives. My skin seemed to be over the worst of the burns, and I was starting to heal, feeling like I was nearing the end of the long road.  I received a wonderful bottle of wine from a friend, so there was further celebration that evening.

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Wednesday I had a follow-up with the medical oncologist. Everything was looking good. Fatigue was my only complaint, yet initial blood work was showing improvements over the dropping numbers caused by chemotherapy. There were more congratulations and hugs. I donated my hats and scarves further symbolizing the end of that chapter. On my way out the door, beaming and ready to ride my motorcycle home on a beautiful fall day, the nurse stopped me and said she needed to talk to me…

Back into an exam room I went. The nurse came in to inform me that my blood work showed an elevated level of troponin, an enzyme that is released when there is damage to the heart. It is found in people who are having heart attacks. It also can occur if radiation stresses or damages the heart. So, having told me this and asking if I had any chest pain or shortness of breath, they sent me on my way with instructions to rush to the ER if I experienced any symptoms of a heart attack. NOT a reassuring thought as I strapped on my helmet and climbed onto my motorcycle for the ride home. I felt every beat of my heart on that trip.

As everything else on this road, the “not knowing” period is the worst part. Left without details, my imagination takes over and fills in the knowledge gap with worst case scenarios. In my mind, I beat cancer but surely would need a heart transplant or other extreme measure to survive the effects of the cancer treatment. The cardiologist called and I was scheduled for a heart echo-cardiogram on Friday. I do not like Friday tests. They usually mean I get stuck, waiting with my imagination, until Monday to hear the results. Thankfully, I got the call Friday afternoon assuring me that my heart was stable. Phew.
NOW, certainly I was done with hospitals and doctors for awhile. I looked forward to the upcoming weekend and a visit from a dear friend, Rania, and her boyfriend. I also was anticipating a possible road trip with my boyfriend with excitement. But (since it wouldn’t be November with orthopedic surgery) on Thursday, I had a recurrence of a sharp pain in my knee. I had already seen the surgeon for the knee pain earlier in the month and had x-rays and an exam. The next step was to have an MRI. I scheduled it and went on with RICE (Rest, Ice, Compression and Elevation), and went forward with fun plans for the weekend.

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I spent a wonderful weekend with friends, reminiscing, riding motorcycles, eating out and toasting the end of cancer treatment. Then Sunday night, the neuropathy that was finally almost gone from my left foot, came back with a vengeance. By Monday morning, my left foot was terribly swollen and painful, making it difficult to walk. I scrambled around to try to see the orthopedic surgeon asap and attempted to move the MRI date up. The surgeon didn’t want to see me until he had the MRI results in, but I did eventually get the MRI rescheduled and a new appointment to see the doctor.

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Now it is Tuesday morning, the day of the MRI. I am able to put a little more weight on my foot, but I’m still limping quite a bit. I called around to make sure nothing implanted in my body contained metal (a no-no in MRI machines). The chemo port checked out MRI safe, the IUD also was okay. Then I spoke with the surgeon’s nurse about the tissue expanders (as I affectionately call them – boob placeholders). Tissue expanders have a metal port in them which the doctor uses a magnetic on to locate the port when injecting saline. NOT MRI safe…

The beautiful weather we had all weekend left with a drastic cold front yesterday, I struggle to walk without pain, I can’t have an MRI to determine the cause of my knee pain, I’m exhausted, disheartened, and my boyfriend is leaving tomorrow for a two week trip that I had hoped to accompany him on. I’ve had better days. I am ready to move forward, get my health back, get in shape, yet, here I sit, looking around at broken pieces.

Wholey Moley

Wholey Moley

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By wholey, I mean my whole body. By moley, I mean moles. What I’m getting at is that my whole body has always had a lot of moles. Being a fair skinned woman who loves the feel of the sun, I’ve always needed to watch my moles carefully for changes. I’ve always been advised to go for an annual check by a dermatologist to make sure none of them are turning cancerous. In the past, there have been a few I have had removed which tested as “pre-cancerous”. Well, as we all know, time flies faster as we age, and life gets busy. “Annual” usually ends up meaning every 3 or 4 years or so, when I remember that I’m overdue for the annual check. Prompted by my medical oncologist who expressed that I had FLM (funny looking moles), I went in yesterday for a consultation. I learned a few interesting things from my new dermatologist. In fact, I’m glad my medical oncologist referred me to this dermatologist, because I learned more in the 20 minutes in his office than I had known about skin cancer all my life, despite trying to inform myself over the years.

The first question I asked was, “does that fact that I just went through chemotherapy mean that any cancerous changes in my moles would have been destroyed by the chemo?” Surely, that seems logical, but the answer was counter to what I would have suspected. He said that the since the chemo weakens the immune system, thus making it harder for the body to fight things on its own, skin cancers actually tend to “come to light” during chemo. So due to the weakened immune system, skin cancers can actually grow and change more during chemotherapy.

Years ago, when I first started watching my moles for changes, I was told that I had Dysplastic Nevi (atypical moles) syndrome. Basically, anyone with a lot of large, irregular moles is at a higher risk of developing Melanoma. What I learned yesterday is that if someone with more than 6 large, irregular moles also has one immediate family member with melanoma, their risk increases to 50%. If they have two immediate family members, the risk is 100% that they will develop a melanoma. Wow!

Another thing I learned is that skin cancers don’t always appear on the parts of the body that have been exposed to the sun. Many times people miss deadly melanomas because they can appear on the bottom of the feet, in between toes and on butts, where, I can assure you, the sun has not shone (on me, anyway…)

Also, another important lesson I learned is that skin cancers don’t always appear as changing moles. In fact, most of the melanomas found on people with atypical moles arise from normal skin and not an atypical mole. The first thing the dermatologist found yesterday was a scaly patch just above my eyebrow ( a common place for skin cancers) that I did not even know existed. Sure enough, after he brought my attention to it, I could definitely feel it. This patch could have progressed to cancer without my awareness. A blast from his cryosurgery device froze that patch off in about 10 seconds. Such an easy way to halt cancer in its tracks.  Especially in comparison to the year-long battle I’m in the midst of against breast cancer.

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I learned that size does matter…when discussing moles. We all know the ABCDEs of melanoma, right? (A) Asymmetrical moles with irregular (B) borders and uneven or varied (C) color, over a certain (D) diameter that are (E) evolving can be trouble. I had some moles that fit the ABC, but were under 6mm in diameter (D), so the doctor said we didn’t even need to consider these smaller moles.

The last, and most useful thing I learned in yesterday’s informative consultation was that, much like the importance of keeping on track with my annual mammograms and breast cancer screenings (which I might not have done religiously), it is very important for me to keep up with my annual skin cancer screening. I made next year’s appointment on my way out of the office yesterday. Cuz I’ll be damned if I’m going to allow another cancer go unchecked in my lifetime…

Respite

Respite

I have spent the last month attempting to keep all things “cancer” out of my mind. Apparently, that included posting to this blog, as I realize it has been over a month since I’ve updated everyone who follows me here. Cancer treatment is a long road and can consume all of one’s time, energy and thoughts. Clearly, it is a road worth taking, but like any long journey, sometimes it is necessary to step back and gain a different perspective before continuing. This month long break between chemo and radiation was just the respite I needed in order to rebuild the strength and determination I need to finish stomping cancer out of my life.

The last round of chemotherapy brought some challenges, but my focus in July was to push through and enjoy as many fun summer activities as possible before the start of radiation, which will impose some limitations on me.

I think I did fairly well during this break in treatment. My returning energy levels and diminishing side effects allowed me to take a couple of camping trips (one by motorcycle), I did some hiking, spent a week at the family lake house, attended state fair (I even went on a couple of rides), and hit some outdoor music festivals. Sadly, I was unable to participate in the Riverwest24 (a great neighborhood 24 hour bike race), but I was able to observe the event as a spectator, which gave me an opportunity to see friends and share the event with my kids. All of this was punctuated by weekly doctor appointments which served to remind me that I’m not over this yet.

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By the end of July, I had a final appointment with the medical oncologist, during which she told me that I was doing great and my blood work proved that I was ready to move on to radiation. She passed me on to the Radiation Oncologist, with whom I met on Friday, July 29th. He seemed confident that I would tolerate radiation without problems. He assured me that it would be a breeze compared to chemotherapy. I was told to expect fatigue, and localized damage and burning to the skin at the site of the radiation. I was also told to stay out of the sun and no swimming. This was, perhaps, the hardest pill to swallow, as August is my favorite month specifically because I love hot weather, the feel of the sun and swimming (things that are cruelly limited in Wisconsin). After the meeting with the doctor, I went in for radiation mapping. The mapping involves a CT scan, lots of measurements and small tattoos to mark the precise location where the radiation will be targeted. After this appointment, I was scheduled to start radiation on August 6th, which allowed me one more weekend to escape.

I took the opportunity to combine two of my favorite things for the first time. Motorcycling and camping. Both are also a huge passion of my boyfriend’s – so much so, that he has several books on the topic (traveling250.com for more). We had a campsite reserved north of WI Dells, but a last minute change allowed us to meet up with some of Andy’s friends, an Australian couple traveling the world by motorcycle. Their travels brought them to the EAA fly-in in Oshkosh, so we left Milwaukee a day early so we could join them. It was my first time to the fly-in. I was completely blown away by the magnitude of the event.

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The ride took us through some significant storms and we arrived, late, to a soggy campground, where we had to set up the tent in the dark. It was worth it, as we got to share some wine and travel stories with some fascinating travelers well into the night. The following day, we walked all over the elaborate grounds of the EAA, attempting to squeeze way too much into too little time, as we wanted to leave early to beat the rain to our next campsite. We didn’t quite make it, and we arrived at Roche-a-Cri state park just as the hail hit. The ranger let us hang out in their shelter until we got a clearing in which to set up camp and cook dinner. The next two days were beautiful and we filled our time with hiking, relaxing and a couple of motorcycle meet ups with a group of friends, which took us through the dells, and a trip on the Merrimack ferry on the way home Sunday.

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Back to my current reality after the camping trip, I went back to the hospital (Andy wouldn’t let me run away and extend our trip indefinitely…). Wednesday, August 6th would be my first day of radiation, which actually involves simulating the treatment with x-rays and further measurements and fine tuning to make sure everything is correct before administering the radiation. It was torture! Still not properly healed from rotator cuff surgery, I found it extremely difficult to lay still with my arms up over my head for such a long time. First, my arm went numb. Then it progressed to pain, then my arm started to shake from the pain, at which time I was reprimanded for moving and told that if I wasn’t completely still we would have to start from square one again. That was enough to make me push through, but I was nearly in tears by the end and not sure I would be able to hold this position 33 more times (yes, 5 days a week for 6 and a half weeks). They told me that the simulation would be the longest one and that subsequent sessions would not be that bad, so I went back again on Thursday to start radiation. Again, there was some fine tuning and double checking, and my arm went numb again, but did not have time to progress to pain by the time it was over. Friday was shorter yet, and my kids were with me, so they got a chance to see what I would be going through, which removed some of the mystery for them. They got to see the machine that gives their mom super-powers. And they got chocolate. What more could you want?