Since Thanksgiving, I have been having a very difficult time breathing, very shallow and labored whenever I expend the slightest amount of energy. Often, I end up having a bad coughing episode followed by anxiety of not being able to breathe. While in NC for the holidays, I visited a walk-in clinic to be evaluated. The diagnosis…Allergy Related Asthma. I was given two prescriptions and advised to visit my Primary care giver when I returned home, in case an inhaler was needed.
The Journey...
Two weeks ago, (Tuesday, January 14, 2014), I walked into the doctor's office expecting to get a prescription for an inhaler for the diagnosis of allergy-related asthma. I walked out with the diagnosis of Breast Cancer! Is that even possible? My reaction was one of shock and dismay.
When I was diagnosed with breast cancer seven years ago, I underwent a successful mastectomy on my left breast, with a zero to 5% chance of it ever recurring. The oncologist was so relieved to share the good news. "They got it all. No further treatment is necessary, no chemo, radiation, or pills." When he stepped out the room momentarily, I turned to my daughter, Tiffany, and said, "Did he just say they got it all and that no future treatment was necessary?" A huge smile came across her face as she said, "I'm pretty sure that's what he said". Dr. Berry came back in with the lab reports and confirmed it. How do you respond to that? Cancer Free!!! I had received the miracle promised me in a Blessing. ("based on my faith, I would be healed.")
Now the shock of hearing the words once again, "I'm pretty sure your breast cancer has returned."
Results of X-rays, blood work, and an EKG from Dr. James Coy's office, had me quickly sent off to the Orem Hospital for a C-scan.
Sitting in the parking lot at Dr. Coy's office, and trying to compose myself, I made a call to Tiffany to let her know I wouldn't be coming to visit as planned. "Wow, that took a long time. What did they say is wrong?", came her concerned voice. "It's not good, Tiff. It's really bad." An inhaler was not going to be the cure for cancer! Still in the parking lot, trying to console Tiffany, the realization hit me just how much this news would impact my family. I'm now on my way to Orem hospital with a million thoughts racing through my head and trying to read the MapQuest prepared for me by Dr. Coy's assistant. As I come out of the Admissions office, rounding the corner comes my knight, my son. Steve had left work the moment he got the phone call and was greeting me with his smile and a hug. I think I melted into his chest. Not three minutes later, Tiffany meets up with us in the hallway. Okay, maybe I can do this.
Cocktail Time! Anyone who knows me, knows that I am not good at chugging liquids. I rarely drink 8oz of water in a day, much less 32oz in two and a half hours! So, here's the challenge. In order to have the C-scan, I have to drink 4oz of medicated grape juice EVERY 20 MINUTES until all eight cups are empty!!! The first three down... not too bad. The grape flavor nearly concealed the dreadful taste of the medicine. The after-taste, however, has made me terribly nauseous. (Thank goodness Steve is married to a nurse. He remembered that Suzanne had recommended sniffing an alcohol wipe to prevent nausea. What a blessing!) So, each "cocktail" is now being followed by an alcohol sniff. By the time I got to the fourth drink, the grape juice was room temperature and there were grape skin sediments attaching themselves to the wall of the plastic cup. The flavor of the medicine was now overpowering any juice flavor and it was just sheer willpower, and encouragement from Steve and Tiffany, that helped me finish those final five glasses. I was gagging after every swallow. Thank goodness for my cheerleaders! With them here, "I can do hard things"! The C-scan would be nothing in comparison!
The radiology staff was so nice and explained everything before doing it. The machine is big with a large circle cut out of it where the bed slides in/out as needed. Being claustrophobic, I was a little intimidated but being able to see right through the circle to the other side, reassured me that I could do this. Then I was directed to raise my right arm up over my head and keep it there until the scanning is over. Now my elbow is sticking up in the air, causing me to have this nervous thought, As skinny as I am (and I'm the only one who can use the word "skinny" to describe me), is my elbow going to fit through that little hole? I watched carefully as the bed and I slowly glided through the opening. Wow! that was a close call! (not really, but ya gotta love claustrophobia!) The man's voice on the machine now activated, and directed me to, "breathe...hold it...let it out". Three or four scans were done, each with the same instructions.
Following the C-scan, it was off to the American Fork Hospital for a visit with Dr. Wendy Breyer, the oncologist. We already suspected it wasn't good news by the way we were being whisked from one hospital to the next. I mean, really, when I found the lump seven years ago, it took three months to get to surgery. Now, the same day I get the initial diagnosis, I'm already sitting in the oncologist's office waiting for the confirmation. Although she had a pleasant demeanor, her expression said it all. "It isn't good." She was a little confused as to how my breast cancer could have returned with the zero to 5% chance I had been given earlier. But it sure looked like breast cancer and it had spread everywhere. Later that night, Dr. Breyer looked over the results of the C-scan again, this time finding a rather large spot on the right kidney. "That would make more sense", she said, "given the way it had spread". The next day, I was scheduled for a biopsy of the kidney.
Wednesday, January 15, 2014
The doctor took Tiffany and me into a little tech lab and showed us on the monitor, exactly what had been discovered and explained what the biopsy entailed. So fascinating to see my kidney moving around, and then, there it was, the dark shadow! It's true, cancer sucks! After the mini lesson, I went back to the room to get the IVs started. The male nurse had a great sense of humor and kept us laughing, so we didn't really have too much time to think or dread what was to come next. Although I was awake, I had been given some good pain-killers. A small cut in the right side of my back, just under my ribs, and it was underway. The surgeon had said that the hardest part of the biopsy for me was to breathe in a consistent pattern so that the lungs didn't interfere with the kidney, allowing him to get better samples. That might have been a small request except that, because of cancer nodules on my lungs, I had trouble with breathing in and not coughing. Coughing would NOT be good! "I can do hard things"... 1-2-3 breathe in...hold it...1-2-3 breathe out...hold it… The pathologist was there in the room with us and each time the surgeon got a sample, it was turned right over for analysis. I was told they were able to get enough good samples.
The Report Monday, January 20, 2014
Dr. Breyer met with us again on Friday morning to go over the results. Interestingly enough, it wasn't cancer of the kidney, it was BREAST CANCER. Apparently, a lone cancer cell had decided to multiply and travel up and down my insides reeking havoc on my kidney, my lungs, liver, and bones. CUMULATIVE STAGE 4 BREAST CANCER! Dr. Breyer needed to know what kind of breast cancer, though, in order to decide the direction for treatment. She sent off for more testing of the biopsy to determine if it was HR+, Er+, and Progesterone+. or if it was negative. Negative was not good because the treatments don't have as good of an outcome. Positive meant that I would be able to receive a much better medication, less side effects, and possibly a more positive outcome. We would have to wait for the results and praying that they came back positive. In the meantime, not a minute to waste…I was scheduled to have the cath-port (officially called a "Power Port"), placed in my chest in preparation for the chemotherapy IVs. Now that is a fascinating little device! Who in the world comes up with these ideas? The nurse explained that prior to the invention of the port, the IVs had to go straight into the veins. With so many chemo sessions, the IV infusions were "brutal" on the veins and would continuously "blow" the veins. Because of my previous breast cancer, I only had one good arm to stick, so they were wanting to preserve my veins as much as possible.
The nurse spent a great deal of time with us, thoroughly explaining the cath-port and even bringing one out to show us. It was amazing! Here is this purple triangle-shaped plastic object that is going to be placed just under my skin, above my right breast. It will be my companion for life unless I specifically request its removal. (My skin will eventually grow over it). Attached to the triangle is a rather thick plastic wire, about 10-12" long. Yep, what you see in the picture is the comparable size. What she said next freaked me out a little. The doctor is going to make a little incision into your jugular, (SAY WHAT???), and place the wire inside. That info was a little disconcerting, to say the least. Like the other procedures, I would be fully awake. (pic: "Power Port" cath port)In the surgical room, everyone was busy with prep work. At one point, the nurse asked me my height and weight. I told her 5'7'' and 109 lbs "on a good day!" One of the male nurses asked, "So, is this a good day?" "I doubt it", I chided, "I wasn't allowed to eat anything after midnight!" The room erupted in laughter. I was glad I could put them in a good mood. :0) Into the procedure, I was actually doing pretty well, when I started feeling a slight pressure on my jugular as if it were being massaged. Self-defense training popped into my head, "Go for the jugular!" Suddenly came a clamp-down sort of feeling and I remember praying, "Dear Heavenly Father, don't let me bleed to death in here." I couldn't see what was going on because they had placed a blue "splatter-cloth" over my face like a little tent, leaving me only a side view of the surgical room. The entire procedure took a little more than an hour, and I was walking out of the hospital a half hour of that. An alien appliance had been placed in my body, and my jugular had been sliced…AMAZING!
Now that my own children knew, it was hanging over me to tell my siblings. I had put it off because my sister, Theresa, and her whole family were having a "celebration" weekend in honor of Bill, and the five-year anniversary of his death. He had died of Cancer. Theresa's daughter, Mary, had just completed her last round of chemo the day after Christmas, and had requested that the anniversary of their dad's death be upbeat and positive. How ironic and insensitive it would be, to call with this news on such an occasion. There was no easy way to share this news and a few days more wasn't going to matter. I tried for several days after that to get in touch with Theresa, my oldest sister, my rock, my friend. No answer. This is not the message you leave on a machine! After several days, I called my sister, Kathy, my "go-to-girl". She will do anything for anyone. I practiced over and over again in my head how I was going to tell her. "Hiwassee!" She said, in her cheerful voice, as she answered the phone. She had literally used an affectionate Term of Endearment, from our childhood. This just got harder! "Hey, Kath" I mumbled, "looks like I'm going to have to call on your "prayer angels" again…" She composed herself well, and I spilled it all out as quickly as possible so as not to dwell on what I was saying. From the other end came silence…concern…questions…tears. Finally, I told her I had been calling Theresa and was starting to worry. Kathy hung up and tracked her down. She had gone to Orlando to, of course, be of help to one her children. Kathy said she would call several of the siblings since my breathing was becoming more difficult. My breathing wasn't bothering me half as much as my heartache. Called Rita next. No answer. Left a message for her to call.
Kathy text to let me know she had called others and they would pass it on. I was finally able to get in touch with Theresa. This one was difficult, but I knew she would be able to handle it. Look at all she has been through. I don't remember the exact words we spoke. She was tender, supportive, concerned, and emotional at times. We could be open and honest, and I needed that. The next morning, Rita called. Jimmy had called her. He was too emotional to talk to her, so he told her to call Kathy. Rita and I talked and cried, then we put on our twin armor and vowed to fight this together. She has text me everyday since. Ever since they found out, I have received phone calls, texts, e-mails, fb messages, cards, and gifts. Each one has overwhelmed me with his/her outpouring of love and prayers.
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Kathy, Stephen, and the kids came for a week-long visit! I could hardly wait to see them. Kylie was also able to come with them. I was so excited to see her! Her husband, Nick, was just baptized a member of the Church the Sunday before they got here. Nick had asked Stephen to baptize and confirm him. I'm so proud of both of them. My Kylie is growing up.
Kathy and Stephen had prepared the boys by telling them that I had cancer and may have good days and bad days. They planned the quick visit before my chemo treatments started so that the kids would be able to spend quality time with me. It was a great visit. Although I stayed on the couch most of the time, I enjoyed watching them interact with their cousins, and play games. The first night, I was a little concerned about Jacob. He was unusually quiet around me. When he was behind the couch watching Brooke play a computer game, I called out, "Hey, Apple!" (A special bonding joke from a few years ago) He immediately poked his head up and with an ear-to-ear grin, responded, "Hey, Apple!" After that, Jacob didn't worry about Grammy the rest of the week. :0)
By Wednesday, 2 1/2 year-old Lori was warming up to me and we had some fun little games going on. She has an adorable smile and personality. She would bring me all her treasures and pile them up on the couch beside me. By Thursday, she was climbing up and cuddling with me! This is what it's all about. I LOVE my grandchildren!
Tommy and Grace got along smashingly, and by the week's end, Grace was declaring that Tommy was her boyfriend and they were gonna get married. (pic: Grace, Lori, Tommy)
Kyle was my protector. He often would come and quietly check on me, several times offering me the warm blanket he had made in school. He did a really nice job sewing it, even has pockets! I loved it, and I was especially warmed by his love and concern for me.
It was wonderful seeing Kylie again. Most of the time, she stayed close by me in the living room.
We were able to talk "girl talk" and it was nice to hear of the plans she and Nick have made. I'm so grateful we have kept in touch and for the special "grown-up" relationship we have. After all, she and I belong to an elite group called "The Flamingos"!
Kathy and I enjoyed constant conversations about anything and everything. She sat on the couch beside my feet for much of her visit. (I should have had her rub them!) hee-hee. We just wanted to spend time together. We talked about the cancer, the chemo, the kids, and about them moving here and how great it will be! (pic: Kathy, at my feet)Several evenings, when the children were sleeping and the adults were heading for bed, and the lights were dimmed, Stephen would come back up stairs, sit down on the couch next to me, and just put his big bear arm around me, or place a giant hand on my knee, and just sit there. His watering eyes said it all, he didn't have to. I felt his love, concern, and support. He wanted to say, "I am so sorry this is happening to you". I gave him a knowing smile and put my hand on his. That's all...No drama, no attention, just love.
Thursday night, Suzanne brought the kids over to visit and have dinner. It was so fun watching them play with their cousins…and the bunnies. During dinner, Annika and Brandon decided to have the bunnies, cage and all, join everyone in the kitchen. So they worked together as a little team, pushing & pulling the bunny cage from the front hallway into the kitchen! SO CUTE!
Steve had to work but called during the week to share news of his business and to check on me.
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(pic: B & Annika pushing the bunnies' cage)
Early Friday morning, Kathy and Stephen attended a session at the Timpanogos Temple.
While they were gone, Tiffany suggested that we all play a Walt Disney game of "Headbands". We all sat around wearing black plastic bands with a cards attached, on our heads. The card had a picture of a Disney character or object from a movie and, with hints from the others, we were suppose to guess who or what "we" were. After awhile, the Mandelin boys discovered that if they sat just right, they could see their card reflected off the glass of the TV cabinet! STINKERS!!! The little ones, however, simply looked at the card on their heads and "guessed" who it was. So, I guess the "cheating" evened out. Kylie, Tiff, and I were cracking up!
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| Kylie"s Headband |
After the Space Mission, Rick and Stephen brought my bed and TV over from my apartment and set them up in what had, just a day ago, been Lexi's nursery. It was nice to sleep in my bed again. It was a piece of me in my "new" home. I found myself dealing with feelings of guilt again. I had been here when Rick and Tiff worked so hard preparing the room for baby Alexis. The adorable bedding and curtains, the pink/grey walls separated by the chair rail that Rick had created and painstakingly attached. Now the curtains and bedding have been taken out and put away. The baby crib, now in the room with the "big" girls, was replaced by my queen-size, dark brown bed.
Steve and Suzanne had hfoped to come visit Kathy and Stephen again before they left. However, Suzanne had text to say that the kiddos had colds and was concerned about bringing them over. I hesitated, then ask them to stay away as I didn't want to risk getting sick just before my treatments were to begin. This will be the hard part, having to stay away from family/friends if they are sick.
(pic: Tifany, Gracie, and Mandelins playing Headband)
(pic: Kyle, Jacob, Kylie, Tommy, Andrew, Lori, Stephen, & Kathy)
All too soon, the week was over and the Mandelin's loaded up and headed back home. It wasn't so sad, though, because I'm pretty sure they'll be back soon. :0)
After saying good-bye, Rick drove off to Lehi Bakery and treated us to donuts. For the rest of the day, they both worked hard, cleaning, scrubbing, sanitizing, and carpet shampooing. Anything and everything got cleaned. (Tiff had read on-line how to prepare a care-taker's home for a chemo patient. She was a girl "on fire"!) I had mixed feelings. They were spending their entire Saturday getting the house ready for me. It made me feel guilty. And yet, they were doing all this for me. I realized again, how very blessed I am.
(pic: Tiffany cleaning up a storm before my chemo starts)
Monday, January 27, 2014
Report #2
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| First Chemo Treatment |
"Uhmmm….what? I didn't know we were going to start today"
"Uh oh! Well, we have it all set up for you today but if you're not ready, you can come back tomorrow." I knew, at this point I wouldn't sleep at all, wondering what in the world I was in for. Chemotherapy scares me! "No, if it's ready for today, let's get 'er done." (That way I don't have to worry what it's like and we'll be one step closer to some kind of outcome).
At first, I was the only patient there. Nice! I had my pick of chairs and didn't have to feel embarrassed. The staff was so accommodating and kind. (In fact, in every aspect of this whirlwind of treatment, I have been treated only with respect, kindness, and concern for my comfort, questions, and well being). The chair was like the "Big Comfy Couch",
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| 1 Down, 5 more to go! |
I hadn't realized that I was so hungry, but I had only eaten one eggo waffle early in the morning, thinking we'd be back home before noon.
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| Loving the support from Melanie. New Tags for her new car! |
The meds: Zometa: used as a support medication to treat symptoms of cancer.
Herceptin: used to treat metastatic breast cancer.
Perjeta: used for the treatment of patients with HER2-positive breast cancer
Taxotere: is an anti-cancer chemotherapy drug.
Before my medicines even began to drip, the room was filling up with other patients. Not an empty chair left by the time I was done. I am always amazed at how many are affected by this dreadful disease. We all have our stories, our fears, our hopes...
Tuesday, January 28, 2014
9:00 Visit to Dr. Breyer's office for a shot. This shot is to give the white blood cells a jump start on fighting the cancer cells. I had my choice of locations. I chose the right arm. The shot was not any worse than others.
Today's mail brought three surprises… 1) a box from the Mandelin family with two bags of my favorite Milky Way Midnights, and a card signed by everyone, and an "I love you" teddy bear, (so soft and cuddly) for me to take with me when I get my treatments. 2) a beautiful "Thinking of You" card from my sister, Mary C. Haggard, and 3) a "Get Well" card from my sister, Kathy, including some stationery, stamps, and cash for "whatever".
My sister-in-law, Carol Blair texted to say she will be coming to visit on the 27th of next month.
I've also been receiving text messages and fb messages from friends and family across the country.
My life is full of blessings!
Wednesday, January 29, 2014
Last night we had Chick-filet for dinner. I had a bowl of their delicious cole slaw and two small chicken nuggets. It tasted good going down but didn't settle too well. It's always going to be a case of trial and error. I won't know what works until I try it. Sometime during the night, I had to go to the bathroom. I had felt queazy so I took my trash bag with me. Had a little diarrhea, then felt better. Slept okay after that.
Tonight, my sister, Kathy, arranged a three-way "conference call" between her, me, and my sister, Theresa. It was so fun giggling, and sharing. It was good medicine. Kathy calls and texts regularly but Theresa is worried about interrupting my rest. It was good just to hear her reassuring voice. Grateful for another good day!
Thursday, January 30, 2014
Last evening, Tiffany visited her friends, Melanie and Brian. Brian was a radiologist who had also had a bad bout with cancer a few years ago. He was a stage 3, going into 4. They were able to share so much information, insight, and suggestions. He was able to share emotions, experiences, helps, and what I could expect as we proceed. Melanie was able to share from a care-giver's point-of-view, offering suggestions, advice, emotional support and cleaning tips. As Tiffany shared with me, I could sense that it had been not only super helpful as far information, but that Tiffany had found someone she could confide in, go to when things get too difficult. They would understand and support her, let her cry, let her be angry, comfort her. She also knew for sure now, this was not going to be easy, but we would get through it.
Kim McCann came over to visit me. She is such a good friend. Tiffany had taken Grace on a field trip to the Dinosaur Museum and I insisted she leave Lexi home to take her nap. When Kim discovered that Lexi was home, she stayed to help me care for her once the nap was over. Really? She is so sweet. She had already told me she was going to the store after the visit and yet she stayed, even though it was snowing.
Texts, e-mails, and phone calls also helped the time go by and made me feel so loved.
Friday, January 31, 2014
Today I got the neatest surprise in the mail. It was an envelope from Kyle. He had done some research on Cancer and wanted to share it with me. He had also drawn a ribbon for breast cancer awareness, and sent the comics from Sunday's paper. What a thoughtful grandson! It meant the world to me to know that he had been thinking of me during his week and took the time to let me know it.
This evening, while on the phone with Steve, I got a strange look from Tiffany and she stood up and asked me, "Is Debbie okay? How is Debbie?" (she thought I was on the phone with Deb). "What do you mean?" I struggled to ask. "Why, Tiff, what's wrong with Debbie? Steve, I have to go there is something wrong with Debbie." Before I could hang up, Tiffany was mouthing to me that Zach's mom, Constance had passed away. I was speechless. My heart was sinking fast and I could barely hear Tiffany reading the text to me. "What do you mean, Zach's mom passed away? That's impossible! People don't just die of cancer so unexpectedly!" (She and I were both diagnosed with breast cancer). A text back from Debbie confirmed it. It wasn't the cancer, it was complications from a lung illness that she had been battling the previous year. A dark veil kind of cast itself on the rest of the evening as we tried to process it, pray, and respond. Life is so fragile and there are no guarantees. I am in stage 4 of breast cancer. My daughter had just lost her mother-in-law. I knew what was being thought and not being said. I am fighting the fight the best I can, but somehow, I must find a way to fight harder.
Saturday, February 1, 2014
Didn't sleep at all last night, knowing what Zach was feeling. Kept praying for him and the family. As the morning wore on, I sent texts to the rest of the family before they read anything about it on Facebook. In tribute, Z had posted photos of his mom and I knew it wouldn't be long before the calls started coming. Feelings of helplessness and emptiness ebbed and flowed.
So glad that January is over! It wasn't a good month, much less a "happy" new year. It had started out so fun and full of hope as I shot off a rifle for the first time ever! I felt empowered. I had plans to set my feet in a new direction. I had determination and hope.
Today, I got two surprises delivered to the door. My sister, Pat, sent a package from Kentucky Soaps & Such, containing specialty soap and Sugar Scrub for my poor dried out body. How fun! It was tucked inside beautiful, pink, curly, strips of confetti with a personal note of how she and her friend, Jan, had happened upon this quaint store as they were spending the day together and discovered this skin-softening soap sold there.
The next surprise came later in the evening. A knock at the door with a flower delivery…a beautiful, sunny, spring bouquet of flowers from my favorite florist , Lehi Flowers on Main. As expected from them, the flowers were perfect and fresh. It was a gift from Leslie and Terry. They included a variation of yellow Daisies, Lilies, Roses, and Carnations, in a spring basket. Ah! Spring in February! What could bring more hope than that?
Today, Tiffany took me to begin the process of surrendering my apartment. I had to do a "buy-out" which meant formally giving them 60 days notice, and paying the sum equaling those two month's rent today and, in addition to that, my February rent was due so, good-bye savings account! What it boils down to is that I have the apartment for only two more months but pay the rent for four months, and have everything moved out by April 1, 2014.
It is interesting to me how so much becomes just a "process". This only occurred to me when Tiffany and I were leaving the apartment complex and Tiffany turned to me and apologized. "I'm sorry, mom. I know this must be so hard for you to have to give up your independence." I hadn't even thought of it that way, yet. For me, it was just the next step in a process of things I now had to take care of because I didn't get an inhaler. I got Cancer! I guess that's my coping mechanism, prioritize and do what comes next. (I chuckled and said, "after all the things I've had to leave behind, Tiff, this doesn't seem like such a big deal.")
After my shower, I came out of the bathroom with my hair wrapped in a towel turbin and announced, "Well, I guess I can live with this!" I had, moments earlier, stood in the bathroom mirror, staring at what would soon be a bald head. Something else I'm just going to have to accept, the sooner the better. I paraded into the kitchen and was met with approving smiles. Brooklyn was a little confused, so Tiffany took that opportunity to explain to the girls that I would soon be losing my hair because of the medicine. Kendall didn't like the idea at all and admitted that she would hate to lose her own hair. Brook just looked down, not knowing how to respond. Grace's response was typical for a 3-year old, an expression that said, "yuck!"
I've appreciated reading your posts, Mom. Please keep sharing. Helps me feel like I'm nearer to you. Xoxo - love you!
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