BC Becky

Never thought I'd want to be a breast cancer survivor

Category: chemo

  • So far so good

    So far so good

    With this chemo regime I take steriod pills and anti nausea pills for three days – the day before chemo, chemo day, and the following day. This means that for days 1 and 2 I’m pretty hyper. My neighbours and friends notices that I talk faster and move faster – but by mid afternoon of day 2, I was slowing down. but got another boost after a nap and meal and my last dose of evening steriods.

    One thing that I’m noticing is a lack of appetite, but still a need to eat. The lower appetite causes me to get a little handry and lethargic before I realize what the problem is. I have a vague recollection of this and almost running into trouble driving home from support group one day during my first chemo experience in 2014. I need to remember to always have snacks with me and to eat them right away when I start to feel something, rather than just waiting a few more minutes – as I forgot and minutes turn to hours. One I get food I am starving.

    I didn’t sleep well thei night after chemo – I left for a few hours and then was wide awake from 3-6am – I used that time to get a bunch of computer work done which was nice. I went back to sleep at 6 and slept until 9:30am. I have learned to not to fight the insomnia but rather to use it to my advantage. Last night I slept from midnight until 6am, so that is better. Although I was up frequently in the night to pee – so that kept waking Cali up. She is going to be a tired puppy all day today as she is still recovering from the overstimulation of two days of daycare.

    Today I’m hoping to use some of my more energy to do some purging and organizing over at the house. I’m going spend a few hours at our house (rather than our new place at Treehouse) going through clothing and such that hasn’t made its way here. I’m going to try to be a bit ruthless in what I bring over – as I just don’t need most of the stuff and it can be burdensome. Of course, then there is the kitchen stuff that I really do want! My kitchen here is starting to look pretty well stocked (almost too stocked).

    I’m wondering about my change in taste as my dinner last night didn’t taste like I expected it to. It is heard to say whether it was not as good, or just my taste buds acting up. I did notice the sparkingly apple/pear juice that I usually really enjoy didn’t taste as good.

    Interesting that when I started writing this blog post I didn’t think I had a lot to say. The process of writing it and really thinking about it has helped me put a few connections together. Knock-on-wood, so fare this is easier than last time.

    One other difference is the Nuelata type drug – after AC I was getting it within 24 hours. With TC is it not before 48 hours. Hopefully that extra 24 hours will help with white blood cell low from the chemo better correspond with the booster causing less bone pain. That is a theory anyways. I’m really hoping for that because I cannot swim again until Wednesday once my port has fully healed.

    I’ve found a reiki healer in town and will try her out on Monday. I hope it works out, as I recall from my last chemo that reiki was the thing I felt I needed the most. I don’t have the strong draw towards it yet, but I might by Monday.

    I also now have a weekly appointment for lymph drainage massage for my right arm (mostly forearm and hand). I ordered custom garments but they haven’t come in yet. There are two people in town that do it, one massage, and one physio, which is awesome. I’ve used up all my physio for the year on my insurance so I’m out of pocket for that (totally worth it), so it is good to have the massage option available.

    I got my chemo schedule – Nov 15, Dec 6, and Dec 27 – so that will take me right up to the end of the year. I continue with herceptin every 3 weeks for year, but that treatment (an immnotherapy rather than a chemotherapy) is much friendlier on my body.

    With the three week regime it isn’t as clear to me when I will start losing my hair – but sometime around 10-15 days post chemo. I ask one of my neighbours who always have fun hair to do something to might either today or on the weekend. Her mom has some left over coloured henna so we might shave some of the bottom and do some fun henna colour patterns. I think that will be amusing if nothing else. Why not?

  • I miss my mom – and my first treatment

    I miss my mom – and my first treatment

    I didn’t really expect that sensation to hit. Last night I realized that one of the things that I was missing this time around is my mom. When I was first diagnosed the recurrence, I was glad to not have to tell her. That was one of the hardest things I had to do. But this time, I realize that what I’m missing is my mom. I’m missing that sense that someone is holding me the only way a mom can. I have a lot more support this time around, but it isn’t the same as feeling your mom is there for you. I miss her so much.

    I’m writing this from the chemo chair at the Bridgewater hospital. I have happy to learn that they had a whole gluten free menu for their lunch. Hopefully the bread doesn’t suck. I was able to order a grilled cheese sandwich, green beans, a salad with egg, and vanilla ice cream. That feels like a lot of food right now, but the second dose of dexamethasone is kicking in and that is making my appetite start to build.

    Access to my port went well. Before I left home this morning, I sprayed benadryl spray around the whole area of the port. I then put a bunch of emla cream (a cream with lidocaine in it to numb the area), then covered it with a mepore bandage to help it soak in. It meant that it was on for over an hour before they tried to access the port – which made it less painful. The steristrips came off today. The incisions have healed well. I’m hoping to be able to swim a few days after the white blood cell booster that I get on Friday.

    For today’s infusion, it is a 90 minute infusion of Herceptin (they call it Trastuzumab). Because this is the first dose, we will wait 1 hour after the dose before continuing. For future appointments, it will be 30 minutes of Trastuzumab followed immediately by the Taxotere (Docetaxel) and Cytoxan (Cyclophosphamide). Each of those will take about an hour, and there is a flush (about 10 minutes) between each. Today will be long day, next time things will run faster, but even faster I’m looking at about 3.5-4 hours. Fortunately this is every three weeks and not more frequently.

    We were informed that the “toxic” part will last about 7 days. That means that for the first seven days we need to take care to reduce anyone getting exposed to my body fluids – including my dear puppy. We will keep puppy in overnight daycare on infusion day and the following day. Then she can come home as long as I’m not sweating too much or vomiting. We will make arrangements for Treehouse and other friends to take Cali if we need someone to take her quickly. I don’t want to give her up for the entire week, since mostly she sleeps with me on the bed or rolls up in the chair next to me while I work.

    And now I’m going to put my computer away and eat a donut!

  • The Cost of Appearances

    In reading the chapter ‘The Cost of Appearances’ in Arthur Frank’s (1991) At the Will of the Body, reminded me of my first Doxorubicin (Adriamycin other wise referred to as A chemo) chemotherapy injection. I wrote about the experience very briefly in a post The First Day Of Chemo on my blog. In my blog post, I failed to mention two things.

    The first reflection was that my husband wasn’t with me when the nurse came to give me that particular infusion. The social worker had come for a visit and my husband went off to talk to her. Somehow, with four AC chemo infusions, my husband was not there for any of the A injections. Doxorubicin is pushed into the veins by the chemo nurse. The rate of injection is closely controlled and the patient is monitored closely throughout. For me, the process took about 10 minutes, as I didn’t have any immediate problems with it. Some people experience immediate heart issues, which is what the nurses are watching for.

    The second reflection was that up until the point of the A infusion I was doing fine. I had taken some premeds (mostly pill form steroids) and had a saline drip running through the hose that led to my port. When the nurse came with syringes filled with the ‘red devil’, which is what Doxorubicin is often called because of it is red, I was hit with an intense emotion. I began to cry. Immediately the nurse drew the curtain. This is what I was remembering when I read the chapter on ‘The Cost of Appearances’.

    Even though emotions are allowed to happen, and respected, they are also hidden. In the shared infusion space, if the person is happy and chipper the curtains remain open. The room is a large space shared by several other people also going through infusions. But the moment you start to have an emotion that is seen to be negative, the curtain is drawn. You are ‘given your privacy’ but this is more about being hidden from the others in the room. Negative emotions are not allowed to be shared in the communal space – you are only allowed to share the positive emotions.

    This need to only share the positive means that patients feel the need to always be putting on a positive face. It denies them the opportunity to express the true emotions that they may be feeling. Sure, there were times when I was genuinely in a chipper mood. Most of the time my outward emotions echoed my inner emotions – but there were other times when I was scared and yet the fear was not validated. Expressing it was hidden from others, such that others who may be experiencing the same fear are not permitted to see that it is normal – that others have that feeling too.

    It seems to me that today I am hearing more about the lack of validation of feelings. Beth also blogged about it today in her post I bet you are glad you beat cancer. Fortunately, for the most part my care team does validate my experience. I blogged about my recent oncology appointment, where my oncologist validated that my crazy hormonal mood swings were real side effects, and we put a plan in place to do something about it. The validation alone made me feel a lot better.

  • “Brain Fog”

    One of the side effects that some people face during and after chemotherapy (and cancer treatment even without chemotherapy) is called “chemo fog”. Heck AnneMarie Ciccarella used it as a witty title for her blog Chemobrain .. In the Fog.

    Turns out that brain fog is also a side effect that some celiacs get when they eat gluten. There are other chemotherapy side effects that also overlap – the other one that is of particular interest to me is peripheral neuropathy. But anyways, let’s get back to brain fog.

    During chemo, I watched a presentation on chemo brain given by Living Beyond Breast Cancer. So, I though it was interesting to read an article about gluten brain fog from the Celiac Disease Foundation. What has struck me is that post cases listed cytokines as a possible reason for the fog. The chemo brain presentation did a good job of explaining it – it suggested that similar to when you have the flu, your body releases lots of cytokines that could be the cause of the fogginess. Chemotherapy or other cancer treatments could cause an increase in cytokine activity. In those with celiac disease, gluten could cause an over production. In both cases, this can lead to a sense of a foggy brain.

    For me this is just one more reason to completely cut gluten out of my diet. I am still in the ‘detox’ phase from the endoscopy. I am, however, finding that my brain is doing pretty good most of the time. I’m not in the fog that I was in when I was taking tamoxifen, which is also good.

    I am intrigued by the overlap between chemotherapy side effects and untreated celiac side effects. I wonder if there is any association between chemotherapy induced peripheral neuropathy (CIPN) and untreated celiac disease? I wonder if my brain fog an neuropathy during my taxol chemo treatments might have been reduced had I known about the celiac and been observing a gluten free diet? Unfortunately, we cannot set back the calendar and try again. We will likely never know. Oh well.

  • Decide who you trust

    A friend (Marie Ennis O’Connor) has asked me to blog about something that I’ve learned through my experiences with breast cancer. I went back through my blogs, looking for this story, and realized that I did not tell it. Perhaps it is because it is a learning through reflection, rather than an in-the-moment type story.  An aside – perhaps it is this type of after the fact reflection that makes books about illness different from blogs about illness?

    When I think back about one thing that I’ve learned, it is that treatments change over time but advice is full of ‘old wives tales’ which are often based upon older treatments. This was never more poignant than during my last round of AC chemotherapy. Throughout AC chemo, I had been suffering from nausea. I new from support group that people who tolerated it well only had nausea for three to five days. I had nausea for at least eight days. Given I was on a 13-day cycle, this meant more days with nausea then without. Now, my nausea was never really bad. When I complained to my oncologist, he asked me “when was the last time you threw up?”. Never. My nausea was never that bad, it just lingered.

    The folks at support group (especially those a year or so ahead of me) would talk about different nausea meds. The meds I was on were not the meds that everyone was talking about. I found myself wondering if I should be on different meds? In my mind, a change of meds would mean less nausea. I would tolerate the chemotherapy side effects so much better.

    What I didn’t realize was that these different nausea meds were the old school meds. The meds my oncologist had me on were the new ones. People in support groups, and some of the older chemo nurses, were not familiar with the new meds. The recommendations I was getting about ‘what works’ were ‘old wives tales’, and I bought into them instead of trusting my oncologist.

    For my last bout of AC chemo, I tried a different combination of anti-nausea meds. My oncologist was away, so his nurse practitioner changed my meds (in part because I asked for it). I’m sure that if my oncologist was there, he would have explained that I was on the new meds, but also that they were doing their job. I didn’t know the other option was the older option. I didn’t realize that the folk lore about the effectiveness was in part just because it was the older meds. The new meds had not been around long enough to be part of the lore. With the change my nausea was no better, but the side effects of the meds were much worse. I ended up with terrible mouth sores (so bad I needed liquid morphine to manage the pain). One of my biggest regrets regarding my treatment was that I changed anti-nausea meds for the last cycle of AC chemo.  I had forgotten my own advice. I had forgotten who I had decided to trust (my oncologist), and let the ‘lore’ effect my treatment.

    This tale is meant to be a cautionary one. Not so much about seeking advice, but about remembering that people who have followed this path before you did so at a different time. The treatment options (and side effect management options) available to you today may not be the same ones that were available for someone else a year ago. Although older treatments may work, chances are the newer ones are better. Before changing treatment plans based upon what you are hearing on the net or in support groups, ask yourself ‘is this a old tale’? And finally, decide who you are going to trust, and trust them.

  • Fatigue and my knees

    At one point this afternoon I realized that what I was feeling might just be fatigue – rather than tiredness. I’ve been struggling with a cold all week and that has had me try to take it easy. But when I realized that what I was feeling might be fatigue, I decided that I’d go for a walk up at Alum Rock park. I was reminded of my chemo mantra – exercise helps fatigue. If you are feeling tired, go for a walk, if it gets better, you know it was fatigue and not true tired. That apparently was the case today.

    Walking down to the car, it occurred to me that my knees no longer hurt. I even tried doing some deep squats. Since mid January I have had horrible knee pain … a side effect of too much Cipro post surgery. This was rather comical (and yet sad) when I tried to pee outside the cabin when camping at Big Basin – squatting didn’t work out so well then. One of my deep seated fears has been that the pain in my knees would never get better. Anti-inflammatories would help ease the pain, but it was still present – at least until yesterday or maybe the day before. The knee pain seems to have completely gone away. I can now do a squat or two without pain (going to have to work on strength in that area now). So, I was extra delighted to go for a walk this afternoon.

    It didn’t take long for the fatigue to wear off. It felt wonderful to walk in the woods. I even did the hike up to Inspiration Point. In the end I walked 6.1 km in 1h40min – so it was not only one of the furthest walks I’ve done since chemo, it was also one of the fastest ones. I didn’t even stop to sit and rest (which I used to need to). This bodes well for the Avon Walk – which is only a couple of months away (still need a few more dollars to qualify to walk – donations welcome at this link – http://info.avonfoundation.org/site/TR?team_id=141489&fr_id=2404&pg=team).

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  • Catching up with some pictures

    I’m getting a little behind on posting pictures. I took this one of me at my tree last Friday (Feb 6). The area around the tree was a muddy mess filled with construction trucks. It appears that many of the trees in boxes are being relocated to their more permanent homes. Because we have actually had rain, the grounds are green and soft, so the trucks tore it all up and made a muddy mess of it. I had to hop in, take a quick selfie, and leave for fear of trees tumbling down.

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    Later that day, in the pouring rain, our friends from Ottawa, John and Alison came to visit. Fortunately our condo has a community room area that we could use, so their grandson had lots of space to roll around and play while we had a chance to visit. It was so nice to see familiar faces :-).

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    Over the last week I’ve been doing more biking. I’ve been able to ride my bikes for just over an hour and generally get in about 17 km. I do find that on my foldie my hands get tired, so I’ve been riding my ‘bent more often. The biggest issue with the ‘bent was getting my leg up from the ground to my pedal – which I’m getting better at. I do find myself worrying about balance on it – but clearly not that much, since I took these two selfies while riding (on different days).

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    It feels really good to be back on the bike and getting some decent exercise. I’m also continuing with the Living Strong Living Well program at the Y. I do find at times that I struggle with motivation to get out, but once I get there I leave feeling so much better both mentally and physically. So, I try to remind myself of that good feeling when I’m having trouble coxing myself out the door.

    My neuropathy does seem to be improving. As a way to measure, Scott and I went back to the Penetencia Creek trail to walk. Yesterday, I managed a 6.66km walk in the same 2 hours that previously I struggled to make 5km. Walking that bit further meant that we got to explore new areas of Alum Rock Park. It is incredibly beautiful – a real gem – and only a 20 minute drive from our apartment.

    What really strikes me as different is that I recover a lot faster from the foot pains. Previously, I’d not be able to walk or stand again for the rest of the day. Yesterday, after the long walk and a couple of hours off my feet, I was able to stand in the kitchen for over an hour making dinner. It is something that I would have not have been able to do two weeks ago!

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  • Chemotherapy Induced Peripheral Neuropathy

    Effective treatment of established CIPN, however, has yet to be found. Lastly, paclitaxel causes a unique acute pain syndrome which has been hypothesised to be caused by neurologic injury. No drugs, to date, have been proven to prevent this toxicity.”
    (Wolf et al, 2008, p.1507)

    It occurred to me just yesterday that I need to do more research on chemotherapy induced peripheral neuropathy (CIPN). I have been in denial for a long time about my neuropathy. Not denial about it happening – as that cannot be ignored – but denial about how long it will take to heal. I stopped the Paclitaxol chemo early (Oct 30) because it was causing neuropathy. When I was in Maui after the end of chemo, the neuropathy  got much worse – and that is when I started taking medication for it. It has now been three months since my last chemotherapy treatment, and I have yet to see a significant improvement in the neuropathy. I’m afraid that at some point, I will need to accept it, but I’m still hopeful of it improving.

    The biggest challenge it poses is walking and standing. I can now walk for 30 minutes before the pain becomes too much and I need to sit down. I still do walks/hikes that are about 2 hours long, but I need to stop and rest my feet for about a minute or two every 10-15 minutes after the first 30 minutes. I am, however, getting to the point where I really don’t like the feeling of the pain. I’m not sure if it is because the feeling is changing, or that because I’ve cut out all the narcotic pain killers, that I’m more acutely aware of the pain when it happens.

    Gabapentin, and its newer analogue pregabalin, have been commonly used in clinical practice to treat symptoms of CIPN, in part due to anecdotal information suggesting potential utility.45 Nonethe-less, this NCCTG randomised, double-blinded, placebo-con-trolled crossover trial (n = 115) illustrated that gabapentin was no better than placebo in ameliorating pain (p = 0.18) or symptoms of peripheral neuropathy (p = 0.38). (Wolf et al, 2008, p.1512)

    Case series reports of two67 and ten68 patients have sug-gested that gabapentin can prevent the paclitaxel-induced acute pain syndrome. Despite the data noted above that dem-onstrate that gabapentin does not effectively alleviate the chronic CIPN associated with paclitaxel, the recent suggestion that paclitaxel-induced acute pain syndrome is, in fact, a pro-cess involving nociceptive fibres that, clinically, is distinct from paclitaxel-induced peripheral neuropathy, suggests a potential for the clinical utility of gabapentin in this situation. (Wolf et al, 2008, p.1513)

    In reading about neuropathy, I am told that it can take 18 months to 5 years to improve, and it may not completely go away. I’m generally not impressed with what I read about it. It sounds like little research has gone into figuring out why it happens or how to improve it. Permanent neuropathy was my fear during chemotherapy. At infusion number 6 I was terrified that the damage being done to my nerves was going to be permanent. Turns out,  that I was not wrong to be afraid. The chemo was working at killing at least some of my cancer, but at a cost. One of the sayings in cancer land is that chemotherapy is ‘the gift that keeps on giving’ … in that, for years afterwards you are still dealing with the side effects.

    I did sign up to participate in a clinical trial that seeks to better understand taxane specific peripheral neuropathy. I’ll also be trying out an experimental treatment  – actually, the treatment is a randomized clinical trial, so I have a 50% chance of actually getting the treatment, and 50% chance of placebo.

    I have also signed up to start cancer recovery physical therapy. My first appointment is the week after next. There are so many aspects of my physical health that I hope physical therapy can help (achy joints, a pain in my left foot). There are also some treatments that might help with the neuropathy, although there is no proven treatment. Even the Gapapentin that I take is only seen as “anecdotal” in its effectiveness.

    The good news is that the neuropathy is not an indicator in the outcomes of the chemotherapy (Schneider et al, 2012). That means that the fact that I have neuropathy does not determine whether or not the chemotherapy was effective on treating the cancer itself. I suppose this isn’t actually ‘good news’, rather it is ‘indifferent news’ as it doesn’t really mean anything!

    One of the challenges I’m facing now is planning. I want to plan a vacation. We have a general idea of when we want to go (late May or early June), but I have no idea how I will be feeling. Typically, our vacations involve a lot of activity – hiking, swimming, snorkeling, biking, etc – but I have no idea what activities I’ll be physically able to do. In addition to the neuropathy, I’m awaiting surgery to clean up my scar tissue and fix my open wounds (not before March 17, but hopefully shortly there after). I’m a planner. I like to have things planned out. But I cannot plan anything right now. I’m stuck with living life day-to-day and waiting to see how things turn out.

    My frustration is amplified a bit today because it is raining. We desperately need the rain – actually, more than rain we desperately need some snow pack in the Sierra-Nevada so that our summer isn’t so dry. So, it is good that it is raining, but that also means I cannot get out and bike. Biking is enough work right now when the weather is ideal – so no, I’m not being a wimp by not biking in the rain – ok, maybe I’m being a little bit of a wimp but I have earned it! Hopefully I’ll be back on the bike on Tuesday 🙂

    References

    Schneider, B. P., Zhao, F., Wang, M., Stearns, V., Martino, S., Jones, V., . . . Sparano, J. A. (2012). Neuropathy is not associated with clinical outcomes in patients receiving adjuvant taxane-containing therapy for operable breast cancer. J Clin Oncol, 30(25), 3051-3057. doi:10.1200/JCO.2011.39.8446

    Wolf, S., Barton, D., Kottschade, L., Grothey, A., & Loprinzi, C. (2008). Chemotherapy-induced peripheral neuropathy: prevention and treatment strategies. Eur J Cancer, 44(11), 1507-1515. doi:10.1016/j.ejca.2008.04.018

  • Neuropathy – what’s old is new

    I seem to be going through these cycles. The first time, I called it chemo recall. It is when my body gives me the same symptoms I had during chemo, except that I have not had chemo since October 30!

    Neuropathy is one of those recall symptoms. Today (started yesterday or the day before) it is in my hands. My finger tips to be more precise. The best way to explain it is that it feels like I have hangnails on all my nails, except that I don’t. My nails are just fine (well mostly). My finger tips are also very sensitive to hot water, making dish washing especially challenging. They hurt when I type. Thankfully, I’m pretty good at writing by dictation as well as typing with the flats of my fingers. I’m also clumsy and I drop things.

    At this point, I’m hoping that this new neuropathy pain is a sign of healing rather than a sign of continuing damage. It is the same feeling that occurred when the nerves were dying (or similar enough) so perhaps that is the feeling you get when the nerves start growing back again (ugh)? That’s what I’m hoping. I’m hoping that what I’m experiencing is regrowth of nerves. Only time will tell.

  • Pathology – What it means …

    I’ve gotten pretty good at interpreting what the pathology reports say, but I’m not great at what it means.

    Just before my oncologist walked into the room I said to Scott – “what I’m afraid of is that he will recommend more chemotherapy”.

    My oncologist walked into the room and said that he would be presenting my case at the case conference the next day. The case conference is where all the cancer specialists get together and collectively try to figure out the best course of action. The question was, do I need more chemotherapy after surgery, and if so, what chemotherapy?

    I actually didn’t think to get confirmation as to why my oncologist thought I might need more chemo – but I’m guessing it is because of the R1 results. This is the first time my oncologist mentioned the bilateral nature of my cancer and how bilateral cancer is rare – which is in part why they don’t have clear path for treatment. In addition, they have only been doing neo-adjuvant chemo for 15-years – so again, longer term outcomes are not completely clear. I’m pretty sure that if we were only dealing with L1, the idea of more chemo would not have been suggested.

    The key reason this question mattered now is that it determined whether or not my port would be removed on my upcoming surgery on December 17th. If more chemo is needed, then the port stays, otherwise it can be removed (making the breast and plastic surgeons jobs easier).

    Fortunately, on Friday afternoon I got word “Case conference discussed your case. No more chemo indicated, we will take out your port at the time of surgery. You will be recommended to take 5 years of Tamoxifen after surgery. No more chemo!” I broken down in tears after reading this. 

    So yay on the no more chemo. I’m cautiously optimistic that the recommendation will remain the same after my next surgery when the full breast pathology is available, but I’m still nervous about the R1 result – the chemo didn’t really work on that tumor, does it mean that I’m destined for recurrence? Or will the surgery be enough to kick this cancer?

    Looking back at the data about complete pathological response in neo-adjuvant chemo, the left breast response is good – it was pretty close to a complete pathological response and may very well have been one had I completed the three additional doses of taxol. So that looks good. That fact that I did not have a clear indication of response in the right breasts is a predictor of absolutely nothing (since the tumor wasn’t as big nor growing as fast – complete pathological response isn’t an indicator of prognosis) … that is, it in no way predicts whether or not my cancer will metastasize.  It is pretty much a roll of the dice … only time will tell.

     

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