My Healing Journey

I was in total misery, writhing in pain and there was no one available to talk to. We went back to the paperwork again, hoping that there was some other option for the symptoms that came with the shot.  There was NO other option, it specifically said ONLY Tylenol after treatment. 

I’m sorry folks but in my opinion, Tylenol is the most useless drug on the planet.  It did nothing for my pain, it didn’t even put a dent in it.

After trying unsuccessfully Saturday and Sunday, my sister was finally able to get in touch with someone early Monday morning at the clinic and relay the story. They were shocked to hear that no one answered the phone as someone was supposed to be on call.  They said they would investigate the situation and we later found out that the phone number they gave us was the wrong number.  This is on a FORM that they give you when you leave the clinic.  Unbelievable!!!  How many others had to suffer like I did because of faulty paperwork?

They finally came back on the line and said that I could take some hydrocodone to alleviate the pain. I already had some left over from my surgery so I immediately took some.

By this time, I was utterly annoyed and disgusted at the fact that I could’ve taken those pills two days prior to alleviate the suffering , but instead I was forced to be in misery for two whole days with no relief in sight. 

I found this whole situation totally unacceptable; first that I couldn’t get in touch with anyone, and second that when I did, it was a simple solution that they could’ve easily put on my paperwork to avoid the situation entirely.  

I was beginning to question my decision to have the treatments, especially with no recourse or back up plan for much needed care for any possible side effects.   This was only the first treatment, and if it was this bad, what on earth was I getting myself into moving forward?  I was really fearful of the unknown at that point.

Thinking back, I probably should have just gone to the emergency room, but at the time, I was in no condition to get to the car and travel, let alone wait in an emergency room for my number to be called.  The Hydrocodone finally made its way through my system and I was finally free of that intense bone pain. As I laid there in my bed, I wondered how I could EVER make myself go to the clinic for the second treatment.

Just as my oncologist had predicted, I woke up on day 13, went to brush my hair and was met with a huge clump of hair in the brush.  Since I had been pre-warned, I was expecting it so instead of belaboring the issue and moaning about it, I decided to be proactive and just shave my head instead of watch it fall out slowly every day.  To me, that would’ve been much more traumatic to experience.

I’ve seen plenty of movies where the cancer patients were crying over their hair loss, but to me, this was something that wasn’t “painful” so I was very grateful. While I love my hair, this was something that I could actually deal with without a lot of emotion because I knew it would grow back.  What I didn’t know until much later, is that it grows back curly and kinky and there is no rhyme or reason. 

It just started me thinking about things like “If it’s doing that to my hair, what is it doing to the other parts of my body?”  All the things I didn’t want to think about after making the decision to undergo the chemotherapy treatments.

If you’ve ever tried to shave someone’s hair or beard or sideburns, you know that it’s not as easy as it seems. It took me quite a while to get all the hair off of my head and I couldn’t get it very close along the top in the back so I just left it a little uneven.  I would curse this lax attitude later during the grow out period but I had no idea how it would affect me at the time.  I took out one of my wigs, and began the journey of “Instant Hair” and wearing a wig every day.  The biggest challenge was trying to keep it on my head with nothing there to hold it in place, especially on a windy day.

I tried the rubber headbands, but those just left me with yet another headache. I tried the hair net which worked a little bit better but in the end, it was just my bare head underneath. There are a lot of windy days in Albuquerque, so I really had to be careful when I went out in order to keep it on my head.  I was always self-conscious and felt like everyone was looking at my head and thinking “That is definitely a wig she’s wearing”.  After awhile, I found some additional wigs that looked more like my normal hair so I settled in for the long haul.

I will say that on the positive side, I thoroughly enjoyed the flexibility of not having to go through the steps of washing, conditioning, blow drying and styling so that was a definite plus for me.  It was so simple to just throw the wig on and walk out the door at a moments notice, rather than fuss around in the bathroom to get my hair just right.  Just another plus in those days that seemed to hold a lot of minuses.

After finally receiving word that my white blood cell counts were back to normal again, I had to really gear myself up for Round 2 of the Chemo treatment.  This time, my neighbor who is also a dear and cherished friend, took me and stayed with me during the treatment. We picked a good movie to watch on my laptop and settled in for the duration. 

Once again, it amazed me how many young kids were in the infusion room getting treatments and with no one there to support them; it made me very sad.  The treatment itself was uneventful, but my trepidation grew stronger by the hour as I knew I would have to go back to the clinic the following day for the dreaded shot to boost my white blood cell count.

I had talked it over with my sister the nurse and my son who is a Physician’s Assistant and we all came to the conclusion that the first option would still be a better option than having to have multiple shots and a continuous migraine. At least the Hydrocodone took the bone pain away so I could pre-dose and be prepared.  I am happy to say that the after shot was a non-event with the Hydrocodone on board. 

I was feeling pretty good the morning after the shot so I thought I would go soak in my hot tub and enjoy my morning coffee which was my normal morning ritual. I had already asked my oncologist if I could continue this ritual and she agreed that it would be fine.  It felt so good to feel the warm water on my body and it was a beautiful morning, the birds were singing and I was enjoying my coffee and a wonderful podcast. I started to get too hot and was feeling light headed so I decided to get out and sit on the side of the hot tub. 

The next thing I know, I am feeling severe pain in my head and my knee and I am somehow lying on the cement wedged between the stairs on the hot tub and the side of my brick house. I have no recollection of how I got there which was more than a bit disconcerting; all I knew was that my head was having intense pain for some reason I couldn’t fathom.  I reached my hand up to my head and felt quite a large bump.  I was puzzled and in a fog.  It took me a few minutes to get oriented to where I was and to finally figure out that I had passed out and was laying on the ground. I had hit my head on the corner of the bricks by the window in front of the spa when I fell forward and I must have messed up my knee on the bricks while I was plunging to the ground.

It took me a few minutes before I could get myself up. My cell phone was hanging on the opposite side of the spa so I had to scoot on my butt across the cement to get it because I was so weak and I couldn’t put any weight on my knee without experiencing excruciating pain. 

I finally managed to call my sister who thankfully lives around the corner from me, and she came over to check me out.  Taking one look at me, she instantly decided that we needed to go to the emergency room. I had a huge contusion on my head, scrapes on my knee and I couldn’t put any pressure or weight on my knee.

Trust me when I tell you, you can’t make this stuff up!  I was so beyond depressed about this incident, but ever so grateful that I had not passed out and fallen backwards into the spa where I would have surely drowned.  Someone was definitely looking out for me that day…

Counting my blessings for still being alive, we went off to the emergency room where they checked me out, took x-rays of my knee and eventually sent me home six hours later. They never wiped my head with all the blood, they left all the dried blood on my knees and they left all the dried blood from the IV on my arm. Not a good experience in the ER.

After my fall from the spa, I had to use a walker for a while until my knee healed.  I also had to get a toilet riser and a frame that goes around the toilet so I could lift myself to a standing position because I could barely bend my knee. I was already very weak from the chemo so moving around the house was a little bit of a challenge and trying to stand long enough to make food was out of the question. 

Once again, my sister came to my rescue. I didn’t have much of an appetite and was losing weight rapidly but she came every day and made sure I at least had some toast and water; those were the only two things that I could tolerate.  Thankfully, the one plus in this whole scenario was that I had not experienced any nausea from the treatment or the pre treatment medication.  One small win for the patient…

When I met with my oncologist, she was surprised at my visit to the ER.  Then she said it was the Hydrocodone coupled with the heat that caused me to pass out.  She recommended that I not use my hot tub until I finished my treatments.  Thinking back, it probably would have made more sense to tell me that before I had the accident, especially since she knew I was taking the Hydrocodone for the shot symptoms.  I would have been armed with information about a potential disaster and I would never have tried to use the spa.  But instead, true to form, all the information I received was AFTER the fact.  This was unfortunately the ongoing scenario throughout my experience.

I asked her at what point do I need to become worried about losing so much weight. She simply laughed and said “Oh don’t you worry about that, it’s coming back.”  I ate a little soup and a lot of toast during my treatments, some scrambled eggs and some rice and chicken but that’s about it, nothing sounded good and everything tasted horrible. Even my cherished morning coffee routine was spoiled because the taste was ruined; it didn’t taste anything remotely close to my beloved coffee.  The chemotherapy had destroyed my taste buds and nothing tasted good.

At this point, my feet had started turning numb and after doing my own research about neuropathy, I found out that sometimes it can be avoided by using special booties with ice packs in them for your feet and hands while having your infusion.  Just another tidbit of information that might have been helpful to have before starting treatments.

Day 19 – Where’s The Manual?

Wouldn’t you think that after all the thousands and thousands of cancer patients that go through the clinic each year, that they would have a pamphlet or a manual to provide to each patient of all the things they should do prior to treatment, during treatment and after treatment?

It boggles my mind that nothing like that exists.  I guess that would be too much trouble for them, it’s much easier to assume that each patient is going to do their own research online ahead of time. That is a pretty big assumption, especially for older people who aren’t computer saavy.  For me specifically, I was already OVER informed on so many levels before my treatments, that I didn’t want to do anymore research on the topic. 

I would have much preferred my oncologist sitting me down, handing me a pamphlet that outlined what was to happen, preventive measures for each situation and some resources.  I would have paid good money for something like that just to avoid all the pain that I had to endure all along the way.

As I mentioned before, I know myself, and I know the way my mind works.  The power of suggestion is pretty powerful  which is why I never wanted anyone to tell me what to anticipate with respect to the side effects. I figured my body would let me know and boy did it. 

What I am talking about are preventive measures. I think that it is their responsibility to inform every patient of options available to ease their comfort, pain and stress. A little pamphlet would’ve been a great addition when I was gearing up for my first treatment. It would’ve told me to suck on ice chips during my infusion to avoid the mouth sores, it would’ve told me to go out and buy the ice booties and hand mittens ahead of time so that I would be prepared for my first infusion, it would have told me I might lose my hair with my specific chemo drugs, it would have told me about the pre-chemo drugs, the anti-nausea drugs, the after chemo injection for white blood cells, etc.  Instead, I went into battle with no armor.  

I am still angry about finding out about these things after the fact, nobody should have to suffer when there are alternative options that can often become solutions. 

By this time, I was ready to call it quits, the thought of a third infusion was more than I could take. My body was beat up, weak and just getting to the bathroom or getting up to get something to eat was a major ordeal. During the day, I could hardly get off the couch. One day lead into the next day and then the next.  

I called my son and told him I didn’t think I had it in me to finish the treatments. I talked to my oncologist and she said that two treatments were better than none and she fully understood how I felt. She said she could lower the dose of the two chemo drugs to see if it would make a difference. I told her I would think about it.

Up until a few days before the treatment was scheduled, I was determined that I would never go back to the clinic. This was in no shape or form what I call any type of living and I really couldn’t talk myself into going again. I was worried about how weak I was, my legs were unsteady all the time now and it worried me.  I called the clinic but my oncologist was out so they put me in touch with her associate.  She told me to double up on my pre-chemo medication so instead of three days, I would do six; she said that would help.  I had my doubts but I also don’t have MD after my name so I decided to go with her recommendation.

My sister the nurse came over and continued to extol the virtues of why I needed to finish my treatments, and she got my friends and my son to call and cheer me on as well. It was easy for them to say, not having to walk a mile in my shoes, but I understood that they all wanted me around in future years so in the 11th hour, I decided to proceed with my treatment schedule and give it a try with the lower dose.

Six days before the treatment, I started taking the steroid.  I had high hopes that it would help alleviate some of the weakness I was experiencing in my legs. 

Instead, it made the situation much worse and I could hardly walk.  My sister came to pick me up and helped me get into the car.  We arrived at the clinic but it was very busy that morning so we had to wait.

You have to be assigned a nurse who will be the one to start your IV and prepare your infusion meds. They had been having a hard time getting into any veins in my arms so they decided that they needed to put it in my hand much to my disappointment.  The nurse announced she would be getting the best nurse for hand IV’s.

The “best” nurse walks in, announces herself and begins to sing her own praises at her abilities for people with temperamental veins and she announces her name is Crystal. She then tells me not to forget her name because she is the go to person and the best there is.

Well, let me just tell you, I will NEVER forget her name because she hit a bloodvessel in my hand causing it to be black and blue and she hit a nerve in my hand so I could not clench a fist for over a month because it hurts so bad. Oh I will remember her name all right, but it will not be in a good way.

It took a very long time to get into my chair in the infusion room because they were completely full.  Once I got into my chair, it took quite awhile before the nurse ever came over to bring my infusions. 

The way that Crystal had placed the IV in my hand made it very difficult to move because I could feel the needle pinching.  Every time I tried to move my hand, the machine started beeping. Thankfully, with my sister being a nurse,  she knew what to do so she took care of it because my nurse was nowhere to be found.

By this time, I was cursing Crystal and wishing I had never met her. It took an hour longer than normal for my infusion because the machine kept beeping and my sister had to keep resetting it. 

We didn’t actually get to watch a movie on this visit, there was a man in his 80’s across from us who really wanted to talk so my sister and I chatted with him the whole time. He had a port in his chest for his infusions, thankfully I only had to have the IV.  

I always took my own snacks, nuts, cheese and filtered water so I shared my nuts with him while we chatted. He was very nice man with quite the story about his life, I was truly amazed at his outlook on life, he gave me a very special gift that day and he didn’t even know it.

By this time, the day after shot was a no-brainer.  Pre-dose with hydrocodone, get to the clinic, get the shot, go home and get back into bed or on to the couch.

My legs were extremely weak and my knee was still bothering me so they had me schedule some physical therapy treatments. They came to my house twice a week and worked on my core.  I couldn’t lift my legs without shaking so they also had me do basic strength training exercises.  I was only able to do a few things but week by week, I got a little stronger.  My knee was still a problem; I was convinced I had torn my meniscus after my spa fall, but nobody seemed too interested in my opinion.  Since I had torn it previously in a skiing accident, I knew what it felt like, but still no one paid any attention to my concerns.

A week after my third chemo treatment, I was so weak and frustrated that I just broke down and cried. I was convinced that I could not do one more treatment, it was just too much for my body to handle and I really couldn’t see putting myself through that again. My white blood cell counts were still too low which meant yet another shot to try and bring them back up. While I was waiting for my second shot, I was trying to be very observant of all the people around me sitting in the waiting room.

I struck up a conversation with a woman who told me she was going through treatments for the third time in 10 years. She relayed her story about her diagnosis, her treatment and her family.  The whole time she was talking I was wondering how anyone would CHOOSE to go through it a second or even a third time.  It was abundantly clear that some people will do anything and everything in order to live no matter the cost.

At that moment, I had to ask myself whether I would even consider having to go through chemo again some time in the future.  I was having more than enough trouble completing the first one so I seriously doubted it and prayed I would never have to find out.

One thing I knew for sure was that I wanted to be a grandma and that I wanted to be around for my grandchildren.  After hearing what this woman had gone through, I told myself that I needed to pull myself together, take stock of what was most important to me and finish the treatment so that I could ensure some sort of longevity in my life.

I can say assuredly, if my doctor had recommended more than the four treatments that she did, I would not have been able to complete anything beyond the fourth.  It had sucked the life right out of my body and I truly believe anything more would have killed me.

I applaud the people that can do it and that have done it and I have the utmost of respect for them, I just know that I would not have been able to follow in their footsteps; at least not in my current situation and feeling the way I did.

Thanking my lucky stars that I only had one more infusion to get through, I realized that there are a lot of really strong people out there; at this point, I didn’t feel like I was on that team.   

Knowing that the final round was coming up soon, I really had to prepare my mind and my body.  I was already meditating daily but I added journaling to my morning routine so that I could express all of the feelings that I had bottled up inside; all my fears, all my hopes and all of my dreams for my future.

I had been on a continual search for uplifting videos, positivity videos and healing videos when I ran across a YouTube video of a woman named Marisa Peer.  She is a well renowned therapist over in the UK.  I have always been a believer that there are no coincidences and no mistakes so when I found her video, I knew it was meant to be.

She talked about how she had healed herself from cancer without drugs, chemo or radiation and that she had developed a meditation that she called “The Healing Vortex.”  She is very famous for her meditations on numerous subjects but the universe brought this one to me when I needed it the most.

I started using her healing vortex meditation every day and every night and it changed my whole mindset.  Sometimes we get stuck in a rut and our internal record keeps playing the same information over and over again in our heads and it literally holds us hostage.  I was able to release a lot of of my limiting beliefs about my situation with that specific meditation as well as some of her other ones.  She is an amazing therapist and I so enjoy her humor as well as her dedication to making her videos free to people who need them.  I would highly recommend her to anyone who is facing any kind of illness.

The day finally came for my last chemotherapy treatment.  With all the meditation and writing I was certainly more at ease than I was on any of my previous visits. I had to have the usual bloodwork before the treatment just to ensure that everything was in order; thankfully it was and I was able to proceed. 

My sister and I picked another comedy to watch so that we could pass the time. We picked the movie “Date Night with Tina Fey and Steve Carell and definitely generated a lot of endorphins.  It was a great choice and a good way to end my treatments, with a lot of laughter.

We decided to celebrate the occasion and went to Applebee’s for lunch. I was still not eating much at this point but it seemed fitting for the occasion. I was still extremely weak but I was so grateful to know that I wouldn’t have to sit in the chemo room again.  That alone brought a smile to my face.

I was scheduled to see my oncologist a few weeks later to have the second dreaded conversation about follow up radiation treatments. Initially, they told me that I didn’t have to have the chemo and just the radiation. Then after the genetic testing was done, they changed their tune and said I had to have both.

At this point, my body was beaten up, weak, listless, and not able to withstand anything further. There was no way I was ready to subject myself to something that would further my downward spiral. 

During my downtime between the end of chemo treatments and my visit with the oncologist, I did some additional research on radiation treatments. I was still on the fence about whether I wanted to subject myself to further torture.

I had made the decision early on that I wasn’t going to tell my clients about my diagnosis and health situation.  My contention was that since I was already working from my home office, no one really needed to know and I rarely made on site visits except to drop off completed work.  I could mail it or get one of my employees to deliver them for me if I had to.  There were only a very select few that I told and I only told them because they had become close friends over the years and were very supportive and wanted to help.

I was inundated with work and not able to physically sit up long enough to do more than a few hours of work at a time.  I decided to contact this specific client to tell them that I would no longer be able to help them and that they needed to find someone else to take over their accounting.  I told her I just couldn’t keep up and I had no idea when I would be able to catch up. I told her the reason and she told me she would not accept my resignation.  She said she wasn’t worried about it and she was confident that we would work it out over time.  

She was such a kind and caring individual and I really appreciated the fact that she felt that way. That same afternoon, there was a knock at the door and there was a man holding a bouquet of flowers the size of Texas! She had sent a stunningly beautiful bouquet along with a touching note of concern expressing her wishes for my recovery.

She mentioned that she had a dear family friend who just happened to be a radiation oncologist and she volunteered to have him contact me so he could answer any questions I might have. This was just yet another example of the Universe organizing things and having the pieces fall into place at the right time.

She arranged for the doctor to call me and we had a very nice conversation. I told him of my research and my overwhelming reluctance to do the follow-up radiation.  He provided me with overwhelming information and statistics of those who only did the chemotherapy versus both treatments. He essentially said that the radiation was the easy part, but I still wasn’t convinced as I had watched my brother-in-law go through radiation treatments for prostate cancer. He was barely able to work, and the minute he got home, he had to go to bed because he was so exhausted. I wasn’t up for any additional pitfalls, adverse side effects and negative outcomes as I was already more exhausted than I wanted to be.   

We talked about longevity and we talked about how the chemo and radiation worked hand-in-hand to eradicate the cancer cells.  I expressed my fears about damaging my heart and lungs with the treatment being so close those organs and I also expressed my concerns about the burns associated with radiation and everything else in between. 

I was grateful for his candid replies, and for his world of knowledge in his field after a 40 year career. I decided to think further about it and told him I would contact him a few weeks later.  After a second conversation, I had to admit his arguments were compelling enough so I made the decision to do the 30 days of radiation. 

What I learned from him is that after you have the surgery to remove the lumps, there are still tiny little microscopic cells floating around that area called daughter cells. They can be benign initially but some can be true cancerous cells.  They are undetectable on an MRI but can also redevelop into cancerous cells over time. This is the purpose of the radiation, to essentially follow up and eradicate those cells that are left behind before they have a chance to decide what they want to do and where they might want to migrate to in your body.  That is how cancer travels to different organs in your body; quietly and undetectable for quite some time.

At that point, I was on board for the treatments; it would give me some additional peace of mind about those daughters cells.  Now it was just a waiting game before I started those treatments. 

By the time my appointment came to meet with the radiologist, I was not in good physical shape to go anywhere, do anything, or even talk to anybody. The fourth treatment had really taken its toll and I could hardly get out of bed let alone get to the bathroom. My legs were so weak and shaky that I felt like I was going to fall to the ground every time I tried to stand up.

My sister had to take me to the meeting with the radiologist to discuss the protocol which would be an initial session the week before treatment to set up all of my specific measurements within their system. Apparently, they mark the area with a magic marker so they can make a mold for you.  This way they can position you precisely in the place they need you to be for the radiation beam.  That was a very interesting process to say the least and pretty amazing to think that they have it dialed in to the exact position of where the lumps were on my MRI.

I told the radiologist that I needed to postpone the start of the treatments and that I was in no shape to start something that was going to possibly make me even worse.  I told her that I needed a mental break and at least a month for my body to heal and allow me to regain some strength. They were very accommodating and didn’t rush me to make a decision, they just wanted me to know there was a time limit to obtain the best results.  They wanted me to get the mold done so that I would be ready to go when I decided to start so they could get me on the schedule.  I learned that when you start, they schedule you out in the exact same time slot every day. 

I didn’t particularly care for my radiologist, she felt disconnected and cold and her bedside manner was often non-existent. My emotions were running rampant by that time.  I was frustrated with the debilitating weakness and exhaustion and equally concerned about my ongoing knee pain.  I was trying to explain to her how difficult it was just to get out of bed and that on a day to day basis, I didn’t have alot of help.  

I was trying to hold it together, but I started to cry and instead of showing a bit of compassion and concern, her response was to ask me if I was mad.  I was a bit shocked, then I actually did become mad as I tried to explain to her how tough it was to live alone under the circumstances while trying to will your body to do your normal tasks without any cooperation.  I told her that was my problem all along and that it was very frustrating to not be able to be my old self.  My body had a mind of its own at that point and it was downright depressing.

She said that she would look into some home care. My response was to ask her why that hadn’t been an option after the first or second treatment. Why did I have to be at my all time worst?  I had only gotten weaker with each visit so that might’ve been a nice thing to offer two months ago. All she said was that she would check into it.

I was not impressed with the whole visit. I told her what the radiology oncologist had told me about aftercare and about the various creams that they had available to put on. One was a cooling gel, one was for dryness etc. I told her before I started my treatments that I wanted to be armed with those creams and I explained that no one had provided me relief items during the chemo but somehow they always came when it was too late.  She said not to worry about it and that they would provide them after the first treatment.

Since I had already been on that familiar path of no information and no solutions during chemo, I told her I wasn’t about to start the radiation treatments without being armed and dangerous. I told her that I wanted them in my possession now so there would be no mistake, no forgetting about it and no additional disappointments. She looked annoyed but had the technician bring them to me.

I told her I would call their office in a month and see how I felt and that if things were better for me, I would start my treatments.  I went home to try and nurse my body back to some sort of health.  I had given myself a month and at that point, I really didn’t care about much else.  I had already told myself that if I needed two or three months, I would surely take them.  That would be a gift I would give myself.

By this time, it felt like everybody in Albuquerque had taken a look at my boobs for one reason or another during all my visits. It’s funny how you start out so modest but after a while, it becomes so unimportant in the scheme of things. I didn’t end up starting my treatments until March as my body was very slow to respond to rest and moderate movement.

The knee injury was slowing down my progress so my oncologist decided to request some in-home Physical Therapy for me.  Initially, they came twice a week for the first two weeks and then once a week for another four weeks. I had two of the most caring and compassionate women working with me so I was very appreciative. They were patient, kind and very knowledgeable, but more importantly, they were extremely patient with me. I made pretty good progress overall but basic daily tasks were still a challenge. I ended up getting an MRI on my knee after no real improvement.  I was not at all surprised when they told me that I had actually torn my meniscus when I passed out getting out of the spa.

I consulted with my orthopedic doctor and he indicated it was not a severe tear and that it would probably heal itself over a long period of time. He suggested an injection, but I was so tired of being poked, injected, infused and prodded that I declined. I really didn’t want any other foreign substances in my body at that point as I was still trying desperately to get all toxic chemo drugs out of my system. My son, who is a PA in orthopedics thought I had lost my mind and could not understand why I would not want an injection. Once again, Holistic versus Western; I just wasn’t ready and really wanted to give my body a break and a little more time to get back to some sort of normalcy.

I was still having to use the walker when I had to go any kind of distance so I arrived at the clinic for my first radiation treatment limping along like Hop Along Cassidy. The treatments were supposed to last anywhere from 15 minutes to a half an hour but in the first few visits, they told me it might take a little bit longer to get the placement exactly correct.

My radiologist had prescribed 30 treatments, every day Monday through Friday.  I had to meet with her at the end of each week so that she could check the status of the skin in the specific area and make sure I was progressing nicely.

You typically go in, get into a gown, and sit in a waiting room along with a lot of other people who are waiting their turn.  I had no idea there were so many people coming from all sorts of cities around the area to get their treatments.  Some were coming from 20 minutes away while others were driving up to two hours each way on a daily basis because their areas did not have the facilities available to give them the treatments they needed. 

Apparently Albuquerque was the big hub so I felt extremely fortunate and grateful that I lived so close.  It is a huge inconvenience having to drive to the clinic every day; after hearing that from the other patients, I would never complain again.

I met a lot of wonderful women, some were there for the first time, some were there for the third time.  Everyone has a story and over those 30 days, I heard alot of women talk about their challenges, their triumphs, and their dark night of the soul.  I didn’t realize how blessed I was until I started talking to these women every day.

We all had our specific time slot so you always knew that you would see the same women every day.  Some days you got to talk longer, some days you went right in and missed the conversations.  After hearing some of the other women’s stories, there was no room for self pity. It was a whole new perspective for me and a time to be grateful.  There are always going to be others that are worse off than you, sometimes we are just so blinded by self pity that we need to be hit over the head to actually see it.  It’s a humbling experience.

The first few radiation treatments took a bit longer than normal; it took the technicians more time to get my body perfectly aligned into the right position while lying in the body mold. Each visit, they would place me, then take pictures trying to match up the “X’s” they had marked on my breast.  Then they repositioned me, took more pictures until they got it just right.  Surprisingly, the radiation itself only took a few minutes. 

I had done some research on different side effects from radiation and was extremely concerned about my heart and my lungs because they told me that there was a possibility of radiation damage since the beams were so close in proximity. They explained that they do everything in their power to just hit the specific target. They also have you take a huge breath in and hold it until they do the radiation; this expands the distance between the radiated spot and the vital organs around it.   

My first two technicians had a little bit of trouble getting me in the right position. They moved me up, they moved me down, they moved to the right, they moved to the left, it was exhausting but they finally figured it out. 

The same two technicians were there on day two and had a similar issue but I was relieved to have two new technicians on day three and they were able to get everything lined up in 10 minutes and do the radiation treatment so I was out of there in less than a half an hour .

Days three, four and five went off without a hitch and I was pleased to think that we were finally in a little bit of a routine. Thankfully I only lived 10 minutes away from the clinic; add to that the fact that I worked for myself and didn’t have to take time off work every day.   

I met with my radiology doctor at the end of the week. You could clearly see the beginning of what looked like a suntan on my right breast. It was a little tender to the touch like a light sunburn but I was armed with all the creams and the soothing blue cream for me worked the best .

I was extremely pleased about the fact that I was not any more exhausted than normal as I had anticipated being wiped out like my brother-in-law.  Happily this was not the case. I had made it through week one unscathed. 

I was still struggling with the day to day activities because my legs were still so shaky but with the Physical Therapy, I was making progress slowly but surely and at that point, that’s all I could ask for. 

I was still waiting to see if I could qualify for some home care and was continually told that they would contact me.  I was not surprised when they never did. Three weeks into the radiation I asked again about home care and was told that they should have contacted me. My response was a little snarky at that point because I was so tired of being put off. I said well that’s great, do you think they’ll contact me before I’m done with my treatments because that would be really nice.

I didn’t believe that anybody would ever call me because I don’t believe that my radiologist ever put in the order for it. At that point, it was just one more thing that nobody bothered about, I was so beyond disappointed and disgusted that I just added it to the ongoing list. 

By this time, I had the same two technicians every day and they worked together like a well oiled machine so I could pretty much count on getting in and out in less than a half an hour. I was slowly easing back into my work schedule with my clients but I was so far behind that it was overwhelming. My two employees had tried to do the best they could with their part and were there for me every step of the way trying to make things easier for me.  My appreciation ran deep for both of these women, they were not only employees, they were dear and devoted friends who supported my endeavors and who were always available to lend an ear when I needed it.

Week by week I continued to meet with the radiologist.  You could definitely could see the line of demarcation on the right breast as it got darker and more tender with every treatment. Thankfully, it was just a visual thing and not so much a physical thing, I felt no real pain, just slight discomfort and tenderness. The creams were my best friend and thankfully there was a solution.

My last day finally arrived and I’m happy to say that the whole time was pretty much smooth sailing compared to the chemotherapy treatments. I never experienced the extreme exhaustion, I had no nausea and no other symptoms. I was beyond grateful! I took cupcakes in for the technicians on my last day and they presented me with a certificate of completion. I stopped on my way home at my favorite restaurant and had my own private celebration…

I woke up the morning after my final radiation treatment and felt very strange.  I was so used to having to be at the clinic every single day, so it was odd to think I didn’t have to go anymore.  Still moving very slowly, I was extraordinarily grateful to think that I didn’t have to start the long, arduous process of pulling myself together to go to the clinic.  It felt so good to be able to just relax; it was very liberating and felt so freeing. I still had a long way to go to get my body back into some sort of shape and to regain my strength, especially in my legs.  I was determined to work my way back slowly but surely and to get back to my normal work routine.

The next step in my treatment plan involved taking a hormone blocker medication for the next 5 years.  Since I was still not feeling that great and was still very weak, I really didn’t want to add any other side effects so I told my oncologist that I wanted to wait a month before starting on the drug.  Hoping that a month would buy me some much needed rest and relaxation, she agreed to letting me wait.

The other protocol was to have a mammogram and an ultra sound every 6 months as a follow up and a CT scan after a year.  The idea of a mammogram squishing my breast was less than enticing, especially since it was still very sore and tender after the surgery.  By this time, 9 months had gone by so I would have thought that it would feel better than it did.  Nonetheless, I had to brace myself for the mammogram.  Thankfully the technician was patient and understanding. 

After all my experiences during the nine month period of time that had passed, I would like to recap my suggestions and concerns for anyone facing a similar diagnosis or situation.

1.  Be your own advocate at all times.  If something doesn’t set right with you or sound right, be sure to bring it up with your doctor.
2. Always do your own research in addition to what you are told, or in my case, was NOT told.
3. Don’t take anyone’s word for anything, check it out because often they are just following basic protocol that doesn’t always apply to everyone.
4. Ask alot of questions even if you have to do it over and over again until you are satisfied with the answer.
5. Don’t feel like your questions might be stupid; there are NO stupid questions.  Every question deserves an answer.
6. Since most oncologists have associates due to their busy schedules, chances are you will see the associates from time to time.  Always make sure that all of you are on the same page with regard to your needs, your treatments and any modifications to your specific treatment plan.
7. Always make sure you have the correct phone number for after hours treatment; this is essential.  Be sure to try the number just to make sure there are no issues.
8. There are many options for integrative medicine that can enhance traditional cancer treatments; some oncologists are open to discussing them with their patients, some are not.  If you are convicted in your desires for those kinds of treatments, do your research and be sure to choose an oncologist who is open to it.  You don’t need to feel like you are fighting your doctor every step of the way with differing opinions and expectations.
9. Every cancer patient has their own story to tell about their experiences whether good or bad.  Don’t let anyone tell you how you should address your own situation; do your research and decide for yourself how best to handle it.
10. Research, research, research…I can’t say this enough.  I thought I had researched the subject to death before I ever started my treatments.  What I realized is that I had over researched some areas such as nutrition, alternative holistic options, the latest research etc, but what I found out was that I under researched the very important area of side effect prevention.  Arm yourself with good information so there will be few to no surprises.
11. Last but not least, have patience with yourself, don’t hold back on your emotions and arm yourself with family, friends and other advocates who can speak for you when you can’t speak for yourself.

I wish the best for anyone facing treatments and I sincerely hope that some or all of my experiences might be able to save others from encountering similar situations.  Knowing what to look for ahead of time, knowing what questions to ask might just prove to be beneficial to even one person.

I would love to hear from others who may have had their own experiences and information to share.  Please feel free to reach out and send us an email with your own story and we can share it on the site.