2 Year Anniversary

I know I haven’t posted on this blog in a L-O-N-G time.  I thought I’d take a moment, as we are between Thanksgiving and Christmas, to share the news that I’ve recently passed my “2 year” anniversary.  I am happy to report that I continue to be “cancer free” and have ‘graduated’ to annual mammograms now, versus every 4-6 months!  This is FANTASTIC news, as it means that I’ve passed the critical time where most recurrences would typically occur.  YIPPEE!!!

I also wanted to say that I am thankful for you, my family and friends, who have cared so much about me during my active treatment phase … and to those of you who continue to care and pray for me as I am back in the phase of living my life again.  I feel blessed that each and every one of you are in my life, and wanted to let you know that.

Wishing you all a very Merry Christmas and Happy New Year … and praying your holidays are filled with many happy memories that will be treasured for years and years to come … and will forever rest in your memory banks.

Medication Side-effects

I’ve been struggling with some side effects from the chemo pill I take.  At my ‘6 month’ appointment, I discussed it with my doctor and he switched me from Letrozole to Aromasin.  This was with the hopes that the awful ‘hip’ pain that made me feel like a 90 year old woman would improve or totally go away.  Well, the hip pain did lessen some, but never went away.  There were even more side effects that came though.  I started to also have knee pain in both knees, and also neuropathy from my elbows to my finger tips.  The worst was while I was sleeping … where I’d wake up and both arms, from the elbow down, would be totally numb.  I couldn’t even feel them!  Then, during the day, I’d have tingling and numbness come and go in both of my hands randomly throughout  the day.  Sometimes it would come as I was sitting at my desk at work typing.  Or, it would come on when I was standing talking to a co-worker or manager while I was holding my coffee.  Not fun .. at all.

At my ‘1 year’ appointment with my medical oncologist (the person who has prescribed this medication), I mentioned this and asked about going back on the previous drug … as the side effects were less and if I needed to take ibuprofen for pain everyday on the Aromasin, I’d prefer to do so on the Letrozole where I had less side effects.  Even though very painful, there were less of them.  He was happy to move me back on Letrozole as it was his preferred medicine for my case.

Well, I’ve been back on the Letrozole for about 1 month now, and the hip pain is back like gangbusters!  I have also starting having the occasional migraine headache – which is also a side-effect and not a walk in the park.  Those of you who suffer from migraines can attest to the painfulness and debilitation these bring on.  I am happy to report, however, that I no longer have the neuropathy in my hands/arms and my knee pain is now gone as well.  So … the lesser of the two evils is what I’m experiencing, but still quite painful nonetheless.

It is awful to realize that even though surgery has removed the cancer from you, and radiation has killed any rogue cancer cells that may have been hiding somewhere … you will still endure YEARS of pain from a pill you need to take to keep your system in a state where it’s not ripe for the cancer to come back and grow.

I have my good days and my bad days, but everyday is one filled with pain whenever I get up from a sitting position and start to walk.  I’ve made a “new year’s resolution” to walk more to help some … which will also to help combat the bone density loss that will also occur as a result of taking this medication.

On my bad days, I always try to remind myself that this is nothing in the scheme of things that others with cancer have had to endure.  Also, there is always someone who is worse off than me somewhere in the world … so I really don’t have anything to complain about.  Some days it’s easier than others to accept that, but I press on and continue to try anyway.

One Year Check-up

Earlier this week, I had my ‘1 year check-up’ mammogram.  My official one year date is November 28th, but since this appointment is in the month of November, it counts as my one year appointment.

I am happy to report that I received the “no cancer found” results … and couldn’t be happier.  After my appointment, I stopped at Starbucks to get my favorite latte, and shared the good news with the barista.  They helped me celebrate by writing on my cup.

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I praise God for keeping me cancer free … and pray for ‘cancer free’ reports for the rest of my life.

Life Post-radiation

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Photo from pixabay.com

I thought I’d share some post-radiation effects that I’ve been experiencing, in the hopes that it will be helpful for others who may be reading my blog on the same journey.  Obviously, the purpose of radiation is to kill any rogue cancer cells that may be lurking after surgery.  Unfortunately, it also does damage too.

I started noticing a tightness/stiffness on my left side … in the area of the shoulder and just below the collar bone toward the underarm area.  It was quite painful to extend my arm in certain directions … and I felt a pulling as the muscles were attempting to stretch.  I mentioned this to my friend, who just also happens to be a nurse and college nursing professor.  She told me I need to do stretches (lifting my left arm straight up and grabbing it with my right hand and pulling it over my head to give it a good stretch) in order to keep breaking up scar tissue so it doesn’t start attaching to other tissue and then get stiffer.  (Thank you, Judee!!)  During one of my appointments this month, I also discussed this and I was told that I also need to also add ‘corner stretches’ (in the corner of a wall) … to stretch even further.  I was told this would also help prevent me from getting “frozen shoulder” later on.

Additionally, I am extremely tender on my left side … even my bone just under my collar bone hurts if even the slightest pressure is added.  I’ve been told that is due to inflammation caused from the radiation treatments.  When I had one of my 3 appointments this month, I asked how long I should expect that to last.  I was told it will last, at least until 1 year following my final radiation treatment.  So … that means I’ll have to wait until March 22, 2018 before I can expect improvement there.

Finally, I still must continue with moisturizing every day, as the skin is much dryer and even has a different texture than the other side.  I’ve been told that it will likely be a lifelong thing I’ll need to do as well.

I am so thankful for being given the gift of my newest first “no evidence of cancer” check-up … and will look forward to getting many, many more throughout my life.  Thank you for all of your continued prayers … and thank you God for answering them.  OXO

3 Hurdles … “check”

This month, I had three separate appointments with different medical providers, in order to determine whether I am still cancer free or not.  It would have been wonderful to have them all on the same day, or even the same week, but that’s now how the ‘real world’ works.  So … I had three appointments that were spread over three weeks this month.

  1. First … the 6 month mammogram.  It came back ‘all clear’ … no cancer visible!
  2. Second … the 6 month check-up with my surgeon.  Again, I got good news … all clear … no evidence of cancer.
  3. Third … the 6 month check-up with my medical oncologist.  I am happy to report that again, I received the good news … all clear … no evidence of cancer.

During my third appointment, my doctor asked me about the side effects of the Letrozole (Femara) that I was taking, as I had called about some, quite severe, pain in my hips.  The pain as I stood up, after sitting for a while, made me feel like a 90 year old.  It’s going to be a L O N G five years if I’ve got this to deal with for the duration.

He told me to stop taking it for 2 weeks, and to call his office at the end of that time, so we can confirm it was the Letrozole causing the hip pain.  In the interim, he ordered me a new medication that I will be starting in 2 weeks.  It’s called Aromasin (generic “Exemestane”) which is in the same drug family as the Letrozole and does not attack the joints (hips) so I should find relief of that.  Additionally, it may decrease my ‘hot flashes’ a bit – which also came on like gangbusters when I started the Letrozole.

So, I’ve got a couple of weeks then I start a new medication.  Wish me luck … that the side effects will be less, and I’ll be able to tolerate this one for the duration of the 5 years I need to be on it.

In the meantime…

Now what??

Now that I’ve finally finished the active treatment phase of my cancer journey, I’m sure some of you are wondering, “now what”?  Well, let me share with you what is next on this road to breast cancer recovery.

I have finished the 6 week round of radiation therapy, and now need to heal up from all the damage caused by the actual radiation.  It will take a couple of weeks before I’ll start to notice marked improvement in my skin healing.  Since my last week was the ‘boost’ – where they narrowed the radiation field to the area where my tumor was, the area that was no longer in that field received a 1 week ‘head start’ on healing.  I have noticed a little improvement already because of that.  So, I should notice a BIG improvement next week.  The plan for now is to continue to moisturize, moisturize, moisturize – and continue on my chemo pill (that I’ll be taking for 5 years).

My next appointment with my Radiation Oncologist is in 6 weeks.  He will check how I’m healing up and ask if I’ve had any issues since my treatment plan completed.  Then, I will continue to see both my Radiation Oncologist and my Breast Cancer Oncologist every 6 months.  Eventually, I’ll transition to once a year (I believe that is after 4 or 5 years remaining ‘cancer free’).

So, my updates here will taper off at this point, unless there is something new to share.  Before I do that, however, I wanted to again say THANK YOU to everyone who lifted me up in prayer during this ordeal.  I felt them – and the Lord has definitely carried me through and has kept me safe.  Those two simple words, “thank you” don’t seem to carry all the emotion I feel behind them, but please know that you are all very special to me.  Your cards, text messages, emails, comments on this blog, and posts on Facebook have helped to encourage and keep me focussed, in a positive way, to fight this battle more than you’ll ever realize.  So … THANK YOU, THANK YOU, THANK YOU!!!  I love you all!!

Until my next post … stay well (I plan to) and please don’t be a stranger.  Keep in touch!!

Burn baby burn…

…and not the way you’re probably thinking.  Not the way you burn when you get a sunburn, or the way you burn when you touch something really hot.  Radiation burns you in a totally different way.  The purpose of radiation is to kill cancer cells, rather, to damage them so badly that they can’t reproduce – thus they ultimately die (in the area actually being treated with radiation).  In this process, healthy cells are also damaged … but they’re able to recover after treatment has ended, and start reproducing again.

In my previous post, I indicated I had started to use the essential oil Lavender to help with the burn.  While it did help that first evening, it is not really helping much at this point.  Here is where the difference in ‘burns’ is important to note.  The ‘burn’ I’m experiencing is due to lack of new skin being able to grow — due to the cell damage from the radiation.  So, since I’m being hit daily (Mon-Fri) with radiation, there is no way for me to ‘get ahead’ of the burn and keep it at bay after it’s started.  It’s simply something that I’ll have to endure until treatment ends, when it will finally have a chance to recover.

So, in the meantime, I will continue to use my special miaderm lotion, I will also use Aloe gel to help sooth the ‘burn’ area until I complete treatment … when it will resolve itself.  I will also continue using vitamin E (following daily treatment and before going to bed) to help with skin recovery, as well as Aquaphor.

As a side note, I’ve found that if I use one of those ‘neck pillows’ they sell for when you fly on an airplane … and I put it under my arm, wrapped around my arm as a barrier to keep my underarm skin from rubbing and becoming more irritated, that is working well for me.  I still find that I may need to reapply aloe in the middle of the night so I can get some relief and go back to sleep.

My mom sent me a link to a forum online  where a radiation oncologist explains what radiation burns actually are.  It is very helpful information about the way radiation actually burns … and explains what is actually happening to you during treatment.  It’s well worth the read if you have time.

Hello- I am very sorry for your pain and suffering. I am going to offer some information, but it is important to me that you understand I am not arguing about what you have been through or trying to minimize it- just helping you with the terminology.

Radiation wounds are not really burns, and they are not rated by degree. Medical professional who are trained in radiation usage will generally not use degrees to rate the wounds. Instead, they will use “grades” from the internationally accepted CTC (Common Toxicity Criteria) that is used by all major cancer research organizations (that is why it is call “common”). The reason you can’t use degrees is that burns start at the top, and spread downward, and the “degree” of the burn has to do with how far through the skin thickness it caused damage. That isn’t at all what happens with radiation- therefore the degree system isn’t very useful.

With regard to some of the advice in this thread- all I can say it that it is well intended, but perhaps not exactly accurate. I do not, in any way, discourage patients from forming communities and sharing information- but sadly that information is sometimes not accurate. Although we can’t stop people from passing around bad information, we (physicians) can minimize that aspect of cancer care by slowly and patiently explaining what we are doing to your body and why- and of course, what you should expect as side effects. As a Radiation Oncologist, my consults generally go well over an hour, with an additional 15 minutes once a week during therapy, and 20 minutes at each follow up. So, for even the most routine case (which are never routine to the patient) I will spend several hours over the course of three months sharing information, explaining, listening, and responding to concerns. I am not a saint- I am paid to do that. The problem is not that physicians are lazy or greedy (some are) but instead perhaps the problem is that physicians often do not understand that their job is more than the performing of the service- their job is also the teaching, comforting, and true healing of the patient. I do not think that the accurate and safe delivery of radiation is good enough- it is only a small part of the job, and if you aren’t going to do the whole job, send the patient to someone who will. I don’t think I apply radiation with any more skill than other doctors, but perhaps I spend a little more time helping my patients understand and prepare for what I am recommending.

With that in mind, please allow me to share a little bit of general information about radiation wounds- although I cannot address your case specifically, having never examined you. There is zero build up of radiation in a patient from external beam radiation therapy (although there is from free isotope therapy or seed implantation- but those are very different). None. It does not happen. So you don’t need to clear any residual radiation out, because there isn’t any. I am not out to insult anyone, but to suggest that there is residual radiation following external beam radiotherapy is just plain incorrect.

Radiation wounds are not “damaged” skin, per se, as much as they are “missing” skin- let me explain- radiation causes skin to fail to reproduce properly, and thus as you “use up” your normal skin, like we all do all day, there are no new layers of skin coming up from the bottom. So eventually the area can ulcerate. This might look like a thermal burn, but it has very little in common with a thermal burn, and the treatments for thermal burns will not help much.

Let me be clear- many skin reactions don’t need, nor will they find benefit from a 100 dollars worth of potions and lotions from the herbal medicine shop. You expect me to say that because I’m a doctor. Perhaps some will stop listening to me now because I don’t think that a plant from the middle of the jungle ground up and slathered on your skin will fix the problem (why would it?). But, allow me to also say- most skin reactions don’t need, nor will they benefit from 100 dollars worth of laboratory chemicals stuffed into a brand name prescription from the pharmacy.

Neither approach will help heal the skin very much, and neither will prevent the damage in the first place. Do I believe in natural cures? You bet. Your body, in its natural amazing way, can regenerate skin without lotions or potions or pills most of the time. Very few radiation reactions need serious supportive care, most (not all) will just get better. Of course, there are some severe wounds that will require medical attention, but without an understanding of what is wrong, no one, be they MD, DO, ND or Shaman, can be expected to properly assist you. If your medical professional is using terms like “second degree” to describe a radiation wound then there is a good chance (although I can’t say for sure) that they are not trained in any of the more than 100 years of science and knowledge that can help you in this situation.

Now, keep in mind, I said herbal potions and laboratory chemicals won’t heal the wound much faster- I didn’t say they wouldn’t sooth the area and ease your suffering while your body repaired the damage. That they are very good at. For a grade I skin reaction, a good non-alcohol containing aloe is about as good as anything that costs a hundred times of much, in my opinion. I would rather a patient use aloe, but there are also some lidocaine containing topical medications that are helpful if they insist. Colloidal silver (a very natural medication for the record, despite being sold at the pharmacy) can inhibit the growth of bacteria, although it may not cure an active infection. Infection in general is actually not that common in radiation wounds- but it can happen and should be treated when it does.

Rarely, radiation wounds do need more assertive supportive care. I’m truly very sorry that you had to experience such a situation. Keep in mind, you don’t have to clear or remove dead skin from a radiation wound like you might from a thermal burn- at least not aggressively. The problem is missing skin, not damaged skin, or at least that is the more logical way to model the situation.

Missing skin can’t be healed with an herb, or a medication, and missing skin sure as heck can’t be scrubbed at until it isn’t missing anymore. Missing skin, for the most part, needs to wait until the body grows more skin. That can take 2-4 weeks for very mild reactions, to several months for serious radiation injuries. Make sure your medical professional has training and certification in these issues, keep in close contact with them, and ask them in no uncertain terms for a timeline that you can use in your healing expectations.

Then, if your body does not respond on that timeline- ask them why, ask them if something is wrong, ask and then ask, and then ask some more, until your doctor explains what is going on with your body to your satisfaction. You have that right, and you also have that responsibility. Very few physicians, and far fewer patients, are qualified to give advice on radiation wounds. Find support and comfort on the internet- but find advice on the cause and cure for radiation damage to human tissues by consulting a board certified Radiation Oncologist- one that cares about your case, and takes the time to explain things to you.

God bless you and good luck.