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.

17 down … 13 left to go!

This week I passed the ‘half way’ point of the radiation portion of my journey.  For me, it was a big a milestone … and cause for celebration!!  Being on the downward slope of this mountain is a good feeling!

I have started to have some of the typical symptoms caused by daily radiation (well, at least daily Monday – Friday).  I’ve got a nice burn under my arm that isn’t very comfortable, and has even woke me out of my sleep numerous times this week.  Thankfully, when I mentioned this to my parents, they told me that the essential oil, lavender, is really good for healing burns.  So, I gave it a try, and it is truly a miracle!  It allowed me to sleep, pain-free, last night.  As an added bonus, lavender smells wonderful and improves sleep!  BONUS!!  So, I will continue to use this to (hopefully) keep just ahead of the painful burning as I continue to be further ‘burned’  through radiation each day.

 

I have been using liberal amounts of the Miaderm lotion in the morning, and then after my treatments each day, I use vitamin E oil, topped with Miaderm.  In the evenings, before going to bed, I again use vitamin E oil, and then Aquaphor for added soothing and moisturizing.

As for the fatigue I was told about … I am happy to report that I have NOT had any of that set in.  Besides the burns I mentioned above, I feel great and continue to maintain a positive outlook and attitude.  I’ve even been called an old childhood name I used to have, by a woman at work … “bubbly”.  🙂  My goal is to be an example of hope in the midst of such an awful diagnosis, and proof that attitude can help in a big way too.  I guess being labeled “bubbly” is proof that I’m succeeding in that goal.

Thank you for your notes, prayers and phone calls.  Each and every one of you are very special to me.  It means the world to know you care so much.  ((HUGS))

An Unexpected Encounter

This week, I met an amazing person in such an unexpected way.  I have been taking advantage of the free shuttle service the hospital offers.  They come to my place of work to pick me up … drive me to my radiation appointment every weekday … and then drive me back to work.  How neat, huh?  I’ve had a couple of different drivers, and this week one of my drivers was Sherman.  He is a very friendly gentleman, and we hit it off right away.  As we were talking, he shared with me different things, and when he found out I was having radiation treatments, he asked how many.  When I told him 30, he shared he had 40+ himself.  WOW!  I told him I had been informed that the fatigue will start at around the 3 week mark.  What he said next had a profound impact on me.  He said he never had any fatigue when he was undergoing radiation, and then told me that I wouldn’t either.  That comment was really encouraging to me, and I’ve held onto it ever since he said it.

As we continued to talk, he also shared that he has been singing for all of his life, knew he’d sing since the age of 5, and has traveled all around the world.  How exciting!!!  I once had a dream to be a singer.  He happened to also mention that if I googled him, a lot of stuff would come up.  So, as he dropped me off at work, following my appointment, I promised him I’d google him and we’d chat about it on Friday, when he was scheduled to drive me again.

Well Sherman, it turns out, is a Grammy winning famous contemporary Christian gospel singer.  This is Sherman Andrus from Andrae Crouch and the Disciples, the lead singer of The Imperials, co-founder of the contemporary Christian group Andrus, Blackwood & Company, and more.  You can read more information about Sherman from wikipedia.  We took this ‘selifie’ when he dropped me off back at work on Friday.

sherman-andrus-and-debi-2017

I was treated to hearing some of his beautiful music on Friday, as well as a simply amazing song he wrote for his wife, titled “I’m Yours”.  He told me it was written many years ago, but only released in 2014 and even nominated for “song of the year”.  Sit back, relax and enjoy his velvety smooth voice … as he sings this beautiful love-song written for his wife.

Here’s another amazing song he sang while on the Gaither’s show.

What a blessing for God to have our paths cross in such an unexpected way.  I thank God for bringing Sherman into my life – in the midst of my illness.  Thank you for being an inspiration to me as I walk this journey, Sherman.

2 down … 28 to go!

I had my first two radiation treatments this week, and thankfully get the weekend off before I get fully into the swing.  I will have a total of 30 treatments, where I go 5 days a week (Monday – Friday) for 6 weeks.  The timing is interesting, as my final radiation treatment will actually fall on my birthday.

My radiology oncologist informed me that of the three simulations that were done, he had treatment plans prepared for all three of them.  My heart sits back a bit from my ribcage, so that is a good thing.  Amazingly, all three positions provided about the same protection (negligible differences) for my heart and lung.  So then the focus went to how much of the breast can be treated in each of the different positions.  In the end, the supine position (on my back) is the best position for treatment … with normal breathing throughout the treatment.

The treatment itself is very short in duration.  I believe I’m radiated for 2-4 minutes tops.  The longest part of the process is getting into the proper position, ensuring I’m aligned with the laser beams properly.  (This is where those tattoo’s they gave me come in.)  The machine moves around me, even moving under the table, to get to the other side of me for proper angles.  I feel kind-of like I’m on an alien planet or something.  I have to turn my head to face toward the right, to ensure my chin is not in the path of the radiation beams.  Since my head is facing right, I watched the radiation machine as it was making the noise like when you get an x-ray at the doctor’s office.  There are ‘fingers’ (for lack of a better word) that constantly move while the radiation dose is being given.  When I asked, I was told it was part of the programming for my treatment … and part of that ‘blocking’ that occurs is the heart block to protect my heart from the radiation.  There is a small sliver of my lung and heart that will receive a small dose of radiation, but I was assured that it is very little – and is well within the accepted margins.  So … both times, so far, as the technicians leave the room – before the machine starts the treatment, I say a prayer “I’m in your hands Lord, please keep me safe”.  I fully trust that God is keeping me safe.

Following treatment, before I go back to my office at work, I apply vitamin E oil (a tip from a fellow breast cancer survivor — thanks MaryJo!) and then Miaderm radiation relief lotion (thanks for telling me about this Jo!).  Thanks to another friend, I have enough of this to make it through my 6 weeks of treatment … and she even threw in one tube with Lidocaine in it that I’m saving for the last week, when I think I’ll need it most.  (Thanks so much, Pauline!)

I’ve been told that I’ll start noticing a difference in the skin after the first couple of weeks, and then at about week 3, the fatigue will start coming on.  This fatigue will remain throughout the duration of the treatment extending for 2-3 weeks beyond when it’s finished.  After then, I’ll start to regain my strength again.

That’s all I have to report for now.

Radiation begins…

I heard from my radiation oncologist this afternoon, and my radiation will begin tomorrow.  I know that I’ll be in the supine position (on my back) for my treatments, and was told I’ll also have a heart block of some sort, to protect my heart from the radiation.  I will know more tomorrow.

Please keep me in your thoughts and prayers, as this is the phase of treatment that I’m really not looking forward to.  I’ll write to share how I’m doing as I progress through this phase, and as I have more to report and feel up to it.

Thank you for all of your caring emails, comments and ‘snail mail’ cards.  ((HUGS))

2/8/17 Update: Wanted to let everyone know that I had a last-minute cancellation of my appt today because of an insurance glitch. Now we’re just waiting for authorization before I can proceed forward.

Radiation Simulation

This week I went to see my Radiation Oncologist for the 2nd time.  It has been ~3 weeks since I last saw him.  I really didn’t know what to expect at this visit, but since my last one was 2 1/2 hours, I figured this one would be no more than 1 hour-long.  Boy was I wrong!  It was another 2 hours, 45 minute appointment.

What they did was conduct three different ‘simulations’ of my radiation treatment.  I was in 3 different positions, and they utilized a CT scan to take pictures of where my heart and lungs are located, in relation to the area that needs to be radiated.  In order to see precisely where those lines were, they used stickers that had small metal “bb’s” so it would show up on the CT scan, so they could do their measurements and calculations.  I also received 6 tattoos (yes, tattoos) – that look like black freckles.  Three would be used to guide them for proper alignment of the beams for radiation for two of the simulations we did, and the other three are for the third simulation.  I will only be using one of the positions during my treatment.

Now the hard part for the doctor starts.  He, and his treatment plan team, will all study these three scenarios, CT scans, as well as the pathology and reports from surgery … to develop the plan of treatment that will be best for me, while at the same time minimizing the harm done to healthy tissue/organs.  So, until they have completed that, I am in a holding pattern again.  That can be the hard part when you’re just wanting to get the treatment done … and move on with life.

Here’s a video that better explains what my treatment will be like, if you’d like to watch it.  it’s just over 17 minutes long, but is very informative.

 

I’ll be sure to post an update when I know more…