Five Years! A Look Back at Where I've Come From.

I did it! 

I met that infamous five year mark! 

They never tell you when "that" time starts when you start that trek. Some say as soon as you have (surgery, chemo, radiation). Others say when your treatments are done. Still others say once you are declared cancer free.

My doctors never said the phrase 'cancer-free', but my test results came back showing no cancer.  

Once I had surgery, I was told I had to have chemo because that little bugger snuck into my lymph nodes and only God knows where it hid after that.  Then the radiologist told me I needed radiation because it would finish what I didn't allow in surgery.  (I opted for a lumpectomy). 

So I decided that once I was finished with active treatments I would begin my countdown. 

I had my surgery on May 21, 2009. That was my momma's birthday. We lost her in 2004. I was a bucket of emotions that day. One of which; I was glad she wasn't alive to be a witness to this. It would have torn her up. But, I was glad to get that beast out of my body. I was also bummed because my girlfriends from Chicago were supposed to come and visit at that time. They even had their airline tickets.  Sadly, that trip has never been rescheduled. And I was scared to pieces!

I started the first of 6 chemo cycles on July1, 2009 and ended October 13, 2009.

Me and my oncology nurse, Mari Kay the day of my "graduation" from chemo.

Then five years ago on February 1st, 2010 I finished up 31 rounds of radiation.

Me and the radiation team on my last day of treatment.

In January of this year I met with my oncologist, Dr. Coffman, and he gave me the choice to stay on or go off of my prescription medication that I've been on since finishing radiation. I opted to finish out what I had at home and then stop. The percentages of additional cancer-free years was not enough to persuade me (or him) that it was worth staying on them. He didn't try to persuade me either way, just gave me facts, but I think he was totally okay with me going off them. 

Dr Byran Coffman

I knew back in 2009 that cancer would change my life, but never in my wildest dreams did I imagine how, and how much, it did. I wish that NO ONE would ever get cancer again, but I can actually say it has been a blessing to go through such a life-altering diagnosis.

I learned, or should say, am still learning, lessons from having gone through cancer.

First I realized that life really is too short to take advantage of.  Love those who surround you, and let them know it. Appreciate the little things in life, a kind word, a beautiful sunset, the sound of wind brushing the tree tops... Seriously, who ever coined the phrase, "Stop and smell the roses" had to have gone through a traumatic incident. Do exactly what it says. Stop! Take time to smell that beautiful fragrance of a rose, to play "patty cake" or "peek-a-boo" with a child. Take time to send someone a birthday card, or just a thinking-of-you card. Tell someone they are beautiful. Reflecting back, I can see how I've eased back into being too busy (i.e: self-centered) and let too many opportunities slip by without appreciating or being thankful. I have it on my agenda to slow down this year and start again showing my gratitude to my loved ones and myself.

Secondly, take your health seriously!  Cancer IS preventable! Our mom's, Dr's and TV ads have been pounding the message into our ignoring heads for decades. Eat your fruits and veggies, get plenty of sleep, drink 8 glasses of water a day and exercise! Such simple, but ignored, pieces of advice that could save our lives.  I might add, stop activities that cause stress and cut out sugar as much as possible (it hides in everything!)  If you don't take care of your body, who will take care of you? It really boils down to a little self-discipline and less television, to take care of YOU. You are worth it!

Lastly and most importantly, and I've gotten away from this one too, connect with the One who made you. When I was going through treatments and had little to no energy, I had plenty of "down-time". I talked to God, read His word, and received His love. He is there all the time, but we rarely slow down long enough to make time to be with Him. I've said it before, and I'll say it again here, relationships take TIME! You must spend time with your spouse or you will most likely end up in divorce, or the dreaded and ugly 'just living together'. You must spend time with your children, or they will become little monsters, out of control, doing whatever they want, which is usually destructive, humans.  You must take time to develop friendships or you end up with lip service statements like: "let's get together for lunch"... "call me"..... or the hang in the air, "we should do that." that never happens. 

The same applies to our relationship with our heavenly Father. The silver lining is, He never leaves us and He always loves us.  It is we who walk away, stay silent or run away from Him.  The good news is, He is always there for us when we finally decide to come back and talk to Him. He'll welcome us back with love and open arms. I can hear Him say to me "I've been waiting for you. Welcome back. I've missed you."  I've missed Him too. I've had a glimpse of the reality of His love, His awesomeness, His patience, His faithfulness, and I miss it.

My heavenly Father, It's been too long since I've sat and talked to you. I'm sorry I've been away too long. It is so good to come back to your heavenly hugs and your loving voice whispering in my ear softly and soothingly. Thank you for always being there for me and for welcoming me back after I've been away. It's good to be home. I love You.

He gave me these last 5 years. What I did, or didn't do with that time is something I live with. Both the good and the bad. I've made some bad decisions and wasted time. I've also made some great decisions and have been thankful for those. If it weren't for going through cancer, I may have never had the "wake-up call" to change my eating habits for the healthier or started getting serious about exercise. Although I'm still learning and realizing things and still making mistakes, I am beginning to let go of unhealthy things like: bad foods, dead-end relationships and things I have no control over. And I've begun to embrace healthier eating, consistent exercise and expressing love and thankfulness to those in my life.  I am trying to stress less and appreciate more and most importantly, sit in my Fathers lap everyday.

Done is Good!

I started my radiation therapy on December 21, 2009 and received daily treatments, except for the weekends, for 6 ½ weeks, totaling 31 treatments. My last treatment was administered on Wednesday, February 3, 2010. The first 23 treatments were delivered to my upper right chest stretching from the center of my sternum to under my arm, then from about 4 inches below my collar bone to about 4 inches above the bottom of my ribs. The last 8 treatments, referred to as a boost, were delivered centered over my scar and a surrounding area of about 6 inches in diameter. Every Tuesday I would get an X-ray taken to make sure the swelling wasn't going to interfere with the position the doctor had chosen, and the therapists would measure me with calipers. Every Wednesday I met with Dr. C and the oncology nurse, Connie, so they could look at my skin to make sure it was still “intact”, always asking me if I had any questions and re-assuring me I was doing great. “Keep doing what you’re doing” Connie would say.

When I first started radiation treatments, my skin was slightly pink and slightly irritated everyday when I would go home. I would apply lotion over the treated area being careful not to rub off the ever present ink markings the therapists made. By the next morning the pink would have disappeared although the irritation never did. However the discomfort was not bad. The hardest part about the first 3 weeks was trying to maintain the ink they marked me with from Monday to Monday. I questioned myself why they tattooed me if they were just going to mark me up every week.

About halfway through my 6 ½ weeks the pink turned to red and the color no longer disappeared. The irritation became very uncomfortable and a constant soreness crept in. At the same time I noticed myself starting to drag. About halfway through the day I would feel the need for a good nap and getting up in the mornings to go to work became much harder.

The last 2 ½ weeks my skin was unquestionably red, tight, itchy, and sore and started to take on a plastic feel. My skin started to peel in some places that peeling should just never occur, and my underarm was a constant source of irritation. It doesn’t help that I am right handed and I was being radiated on my right side. Every movement I made would cause my skin to stretch, or cause my arm to rub tender skin. By this time I would wake up tired and remain tired throughout the day. Often times I was ready to go to bed by 8:00 at night. Nurse Connie gave me gel pads to apply to the areas that offended me the worst; however these were hard to keep on under my arm where the constant movement would make the pads buckle and itch my skin even worse.

My last treatment was bittersweet. I was glad it was over, but I had come to look forward to seeing the technicians I saw everyday. The “girls” gave me an Award of Achievement and ½ dozen carnations with baby’s breath and fern on my last day. I also got a hug from each one. Connie, my nurse, said more than once that I had come through radiation treatment with phenomenal results. She had told me that she expected me to have a rough go of radiation as I had just come from chemotherapy and I am fair skinned. She asked me more than once what cream I was using as my skin held up so well. I shared with her the new cream my cousin Ron had suggested. Thanks Ronnie, it really did help. BTW, it was SBS-40 OTC hand cream. I didn't start to experience fatigue until the last couple of weeks and even then it was tolerable to still work everyday and function somewhat normally.

I was told by many people to celebrate my last treatment. I took Thursday and Friday off to get some much needed rest. Celebration took energy I just didn't have. However, My dad and sister sent me a giant card signed by family and friends down south, as well as a gorgeous pink crystal necklace with the design name of “Celebration”. How appropriate! Thanks Daddy and Laurie. Jenny made me a Pineapple upside down cake done the old fashioned way, in an iron skillet. Yum! Dave took Jenny and me out to dinner at Thyme, The Restaurant, in Medina to celebrate being done with the major treatments. That was a treat. Can I just say, between the Pear and Parsnip Soup and the Crème’ Brule’, and not failing to mention the Spinach and Mushroom gnocchi, it’s now one of my favorite restaurants in Medina! Try it if you live anywhere close by.

Even though my treatments are over, I still have residual affects that I need to deal with. My skin is peeling, but healing, and for now I am still a bit tired. But, like my friend Chris says “Done is good!”

I go back to the cancer center Feb 18th for a port flush and an appointment with Dr. Coffman, my oncologist. I expect at that point he will talk about starting me on the drug Tamoxifen and possibly some follow up tests. I intend to pin down a commitment to arrange to get my port out. It has served its purpose and now it’s time to have it removed.

Looking back, I should have told Connie the nurse, that it was prayer that sustained me so well through radiation. Where have I heard before that I breezed through treatment? Was that chemo? Yes, and was that radiation? Yes. Thank you to all who have been praying for me. I am a living testimony of the power of prayer. I thank God that He keeps meeting me where I am and providing for me there.

Let the Rays Begin!

Monday December 21st began my radiation therapy. I go in daily to work, then at 11:35 a.m.leave for the cancer center, which is located across the street and down 2 driveways. I sit in the waiting room for usually no more than 5 minutes before they call me back for treatment. On Monday’s they weigh me (can you say motivation?) before I slip inside a tiny closet to change out of my top into a lovely hospital gown. I then wait (sometimes not at all) in another small waiting area just outside those tiny closets until they call my name.

The room where the treatment is given is a large room with one of those uncomfortable “beds” in the center of the room. At the head of the bed is a huge machine that delivers the treatments to my body. Once I lie down on the bed and grab the bars behind and at the top of my head, and they place a bolster behind my knees, they begin the process of lining my tattooed dots up with the intersection beams in the room. I keep wanting to scoot myself to help them, but they tell me to lie still and let them do the work. They lower the lights in the room so that they can see the laser beams better against my skin. They then take the sheet I am lying on and slide it to just where they need me to be, then one of the two begin calling out numbers to the other as they line me up perfectly with the beams of the machine as it begins to hover over me. Once they are satisfied that it is “perfect” they turn the lights up and leave the room.

The machine is positioned at two different angles and each angle administers two different doses. The first dose typically lasts about 15 seconds and is accompanied by a high pitch buzzing sound. The second dose lasts about 5 seconds with a lower buzzing sound. I count every time I hear the buzzing begin and each time it is slightly different. Sometimes the first dose is 14 seconds, and at times it has lasted as long as 17 seconds. The machine then angles to the other side of me and repeats the same sequence of doses. The only time the therapists come back into the room is after the machine has switched sides. They insert some type of plate over the dosing screen before the long dose is administered. I asked my therapist about the timing and she said the machine is loaded with my dose. The seconds, or half-seconds’ differences from day to day depends on the humidity in the room, my body temperature and the moisture in my body and even the weather outside. The machine knows the exact dose to administer regardless of the conditions surrounding it, and adjusts itself accordingly.

The entire process in the treatment room typically takes no more than 10 minutes, which is a good thing as my arms are usually falling asleep by then from being over my head. The therapist come back in and lowers the bed while the machine goes back to home plate. They then bid me good day, “see you tomorrow” and I go back to my tiny closet to dress for the outside world.

Every Wednesday I have appointments to meet with the radiation nurse and the radiology oncologist to discuss any side affects and have any questions I may have answered. Last week was my first appointment and already the doctor noticed swelling and some “pink”. He advised taking some Advil to relieve the tenderness but assured me all is well. I notice heat radiating into my coat as I am driving to finish up my work day at home. There is slight irritation and tenderness already, so as soon as I get home and log onto my work computer, I make myself comfortable and apply moisturizing lotion to the affected area. The heat I feel is a real indication to the burning that is happening to both the good and bad cells in my body. I know that radiation is for the best, but it is a little freaky knowing that good cells are getting burned up in this process too.

To date, I haven’t started glowing, so I’m not a dead give-a-way while playing hide and seek just yet. My eyelashes and eyebrows have begun to grow back in as well as the hair on my head. However it will be quite a while before scarves and wigs are put aside to make way for a new short hairstyle. Radiation will have no affect on the growth of my hair, so by late spring/early summer I should be able to don my new “do” to the world outside of home.

I understand that things will get a little tougher before they get better, but Dave, Jenn and I are looking forward to a healthier and happy year in 2010. I pray each of you have a better year too. Happy New Year!

X Marks the Spot!

Monday I met once again in a consult with Dr. C and his nurse and heard again how radiation “finishes” what my surgery started and how fatigue and sunburn are the only expected side affects I should experience. They said the fatigue with radiation is not as bad as chemo, that‘s a plus! The numbers of treatment have declined from the original proposed 33 treatments to now only 31. That’s like a sale where they mark off .50¢….on a leather jacket.

I went in two days later for a “simulation”. This is where my therapist marked me for precision radiation. A simulation is a CAT scan that creates a 3D image of me to map out my heart and lungs so that those are protected during radiation. We don’t want to destroy any healthy cells that shouldn’t be part of the radiation process. First Jennifer, my therapist, lined me up on the “bed”. I have no clue why they call it a bed as it is unlike any bed I’ve ever slept on. It was hard and uncomfortable, but I digress. She then marked me with an X, with a fine tip marker, where the laser beams in the room intersected me. She applied sticky tape with wires inside them to create borders as the CAT scan doesn’t recognize borders, only bones and tissue. Once the doctor approved the lines and borders, she scanned me. After the scan she took all the metal tape off and tattooed the X marks with a tiny dot in the center of each X. I’m living wild now, I’ve got tats!

I will go in again on the 18th of Dec for another simulation. This will insure that the “map” of my body lines up perfectly with me. Providing this is all perfect, I start daily radiation treatments Dec 21st and will end Feb 3rd. If you’re wondering, like I did... no, they don’t “do” holidays. So my first two weeks will be 4 day weeks versus 5 day weeks. I will still have 31 treatments regardless of the Friday holidays.

The nurse let me know that the first two weeks are the easiest. She said the body can repair itself after each treatment and I will hardly notice any difference. However by the end of the 2nd week, the body runs out of steam trying to repair destroyed cells daily and struggles to heal itself from that point on. That is when I will begin experiencing fatigue. They think I shouldn’t begin any discomfort from ray burns until after the first two weeks, however, as I am fair skinned we will have to “play it by ear” as to how quickly I react to the rays.

I am not allowed to wear deodorant or powder or any other topical solutions on the area to be radiated as it will act like oil on a sunbather’s body and enhance the burn. I learned that I haven’t had to wear deodorant under my right arm since surgery as they removed sweat glands when they removed lymph nodes. This was news to me, but there’s another silver lining. It will take twice as long to use up my deodorant as it has in the past. Think of all the money I could have saved if I’d known that earlier!

Thanks for sticking in there with me, only 6 ½ weeks of radiation. Drug therapy will begin once radiation is done, but, one step at time. Love you all.

Overdue Update

I apologize for not updating the blog for awhile. Many of you have called or texted for updates, so I realized I am long overdue. Here's what has happened since my final chemo session.

Dave and I met with Dr. Coffman on Nov 6th for a follow up to my last chemo session. My CBC (complete blood count) showed that my red blood counts had gone up a whole point from 9.6 to 10.6. Thanks for your prayers, (Thank you God), I did not need another Aranesp (iron) shot! I had already began to start feeling stronger and have continued to do so since then. Dr.Coffman released me to go back to work and told me he wanted to give me another month to regain my strength and energy before starting radiation. The front office staff set an appointment with Dr. "C", my radiology oncologist, before we left that day.

I started back to work the following Monday, November 9th. I knew it would take awhile to acclimate to a work schedule, but I didn't realize how exhausted I would be. Even now I am still coming home tired and typically falling asleep on the couch by 8:30 at night. Thankfully my boss has allowed me to work from home when I feel I need to, so I have taken advantage of that option a few days a week. Mentally it has been a real boost for me to go back to work. I am no longer a patient 24x7, or thinking about cancer or treatments or the next doctor's appointment all the time. My teammates have been great helping me catch up on what took place during my absence and have helped me remember policies that I have forgotten so that I can assist my stores.

Wednesday before Thanksgiving I had my first port flush. I had forgotten to put my Lydocaine on before leaving the house, and I drove myself, along with my SIL Donna, so I couldn't put it on in the car. I did put it on once I pulled up outside the cancer center 5 minutes early and waited to go in until the last possible moment. Once inside the nurse told me that we would do a CBC to check to see if I needed another Aranesp shot. I told her I was under the impression that I was there just for a port flush. She looked in my file and said she didn't even have that down. (OK, scary). Then I told her that I shouldn't need another Aranesp shot as my counts were up to 10.6 the last time I was here. She again looked at my file and said she showed my counts at 9.7 the last time I was in on Oct 13th. (Getting nervous now). I informed her that Oct 13th was my last chemo session and that I had been in since then and my counts were up when I was in last. She finally figured out that when I visited Dr. Coffman those nurses put everything in the computer and didn't print things out to put in my file.

By the time we got all the reports figured out 20 minutes had passed by and I was hoping the Lydocaine would be working. The nurse punched the needle into my port and I realized quickly that 20 minutes is not enough time to numb sufficiently. Ouch! Then to make matters worse nurse Barb couldn't get my blood to flow. After lying me back, having me turn my head, pushing on my port and trying for way too long to get blood for the CBC, she was finally successful. My red blood counts came back at 10.8. I was disappointed that I had only gone up 0.2 points but it did explain why I still feel so tired at the end of a day. 45 minutes after we arrived we finally left. I had told Donna that we would only be there 10-15 minutes. Sorry Donna.

Chemo continues to wreak havoc on my body. I have rings on my fingernails and like rings on a tree tell how old it is, the rings on my fingernails tell how many treatments I've had. My fingernails have also begun to lift which make the tips of my fingers tender. I just recently lost the last of my eyebrows and expect to loose what's left of my eyelashes soon. Now that I've gone back to work, I've had to start actively managing my lymphodema (swelling of the lymph nodes). Sitting around, along with gravity, makes my right arm swell. I've had to get a compression sleeve to wear while I'm at work to keep the swelling at bay. On the upside, my energy is improving, my taste buds seem to be fully repaired resulting in putting 5 lbs back on, and I'm getting peach fuzz on my head, so hair is forthcoming!!

My next doctor appointment is set for this coming Wednesday, Dec. 2nd with my surgeon Dr. Levy. This will be my 6 months follow up. It's hard to believe it's been 6 months since my surgery. Next Monday, Dec. 7th is when I meet with Dr. "C" to begin the radiation preliminaries. A mold will have to be made, tattoo's for precision line up have to be gotten and other preliminaries will be administered before I actually start radiation. Once I know when the treatments begin I will let everyone know.

Thank you all for the support you've shown throughout all of this. It's almost done and then I can begin counting my anniversaries of being a survivor.

Radiation Consult

Although a bit early, we were scheduled to meet with my radiation oncologist Dr. "C" this past week in Independence ,right behind where I'll be having my chemo.

Radiation is a highly targeted, and effective way to destroy cancer cells in the breast that may stick around after surgery. Radiation can reduce the risk of breast cancer recurrence by about 70%. Although I had surgery, that alone cannot guarantee that every last cancer cell has been removed from my breast area. Radiation therapy uses a high-energy beam to damage cancer cells and normal cells as well. However, cancer cells cannot repair themselves, whereas, normal cells are better able to repair themselves and survive the treatment.

Radiation treatments will not begin until about a month after chemo finishes, but when I do start, I will have 33 treatments of radiation. 25 of those will be directed to my entire upper right chest from just below my breast, over to my sternum, up to just about my collar bone and all underneath my arm to include the lymph nodes. The last 8 treatments will be a "boost" to just my scar site areas (by then they will be a scars). These 33 treatments will take 6 1/2 weeks to complete, going in daily Mon-Friday for about 10-15 minutes each treatment. Once a week I will meet with the Dr. and once a week I have a consult with the oncology nurse to cover skin care, side affects and other issues that might arise. Sunburn and fatigue are the most common side affects to these treatments. Although the doctor did say that some people experience nausea, he didn't expect that to happen. Some damage to the remaining lymph nodes may occur which will increase the risk of lymphodema. The most serious risk I face is scarring on the tip of my lung. That scarring will remain a "monitoring" issue for the rest of my life.

Dave seemed to be comfortable with the nurse and doctor. Maybe I was just having an off day, but I didn't get warm fuzzies with this group. So far, everyone we've met at the Cleveland Clinics have been warm and compassionate and experts in their field. It's not that Dr. C and his nurse, weren't, but .....I don't know, I just didn't have the peace I've had with the others. I may continue to search for a radiation oncologist. I have time.

In the mean time, I have a PET scan this Wednesday (June 17th) at Hillcrest Hospital (a Cleveland Clinic branch). I am praying that there are no surprises. A PET scan is a Positron Emission Tomography nuclear test. A radioactive solution (tracer) will be injected into my veins and then I get to "rest" for about 45 minutes while it travels throughout my body. When they scan me, the dye puts off energy so they can see all my organs and tissue. If there is any cancer present it will light up like Christmas tree lights. I'm hoping my technician doesn't dream of sugar plums while watching my scan.

I will update again once we get results back from the test. Hopefully we know something before I go into the MUGA scan. More on that later.

Thanks for all your prayers as we continue on this journey.