Tired

A week after my final surgery, I am feeling sore but most of all TIRED.  Will I see a resurgence in energy at some point?  I hope so and wait impatiently for that day.  I have less of a desire to do every day things.  Trying to decide if priorities have changed and some things just aren't as important to me as they used to be?  (Cleaning house for example,) I feel like I do much less during the course of a day.  Other things are more important.  I have started taking an hour for personal scripture/religious studies along with my personal prayers each day. I am doing it first thing in the morning in an effort to show Heavenly Father that He and the Savior are more important than other daily activities.  I am taking a new interest in cooking meals.  I have felt such a sense of satisfaction at gathering my family around the table and feeding them meals that they love.  I have started trying one new recipe each week in the hopes that I can keep the family anticipating and looking forward to my home cooking.  It is a way for me to continue to nurture and care for them.  Had a nice moment with Jamison and Sophie tonight.  We were just sitting around the family room talking and I told them how much I loved them and how happy I was that a year after my diagnosis I was still here with them.  They are a year older and further along in their lives and I count it a great blessing to still be here with them, watching them as they grow and mature in this life.  It was such a warm, sweet moment!  I hope to have many more of those!

Michelle Sullivan stopped by with some banana bread and words of encouragement.  So kind.  I have got to get that recipe!  Our Ward family took care of us once again and brought meals in for the first 4 evenings after surgery.  So wonderful, what a blessing they have been and continue to be.

9/6/2015 Reflections

This is the view from one of the hanging chairs outside my back door!  One of my favorite places to be as I read, write or eat.  I love living in the foothills of this ridge.  So peaceful and pretty. Yesterday, I went to the dentist for my bi-annual check up and cleaning.  Saw my friend Shannon.  She is a 3 year survivor of breast cancer.  Shannon had it rough during her battle.  She was one of those, that had just about every complication and negative side effect possible when she went through her treatments.  As an example, to this day, her hair has not grown back.  During chemo, she was so sensitive to the chemo that the minute the IV started giving her the meds, she started throwing up.  And yet, she made it through with a lot of wisdom and encouragement that she has passed on to others.  It was soooo validating to talk with her.  

After taking the "Cancer Transitions," class, I was prepared with the idea that getting back to life was going to take time and for some...it can be even more difficult than getting through treatment.  So difficult in fact that a type of PTSD can be experienced.  REALLY?  WOW...... the questions, "How are you doing?  How are you feeling?" are loaded for me right now. Wonder when that will change.  I have a hard time putting it in to words.  The best analogy I have come up with so far is this:

"For with God, nothing shall be impossible, " St. Luke 1:37. There is a Christian poem called "Footprints." This popular text, describes an experience in which a person is walking on a beach with God. They leave two sets of footprints in the sand behind them. Looking back, the tracks represent various stages of their life. At some point, the two trails dwindle to one, especially at the lowest and most hopeless moments of the person's life. When questioning God, believing that the Lord must have abandoned His love during those times, God gives the explanation: "During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you."

That pretty much sums up my cancer journey.  Through the enabling power of the Saviors atonement, I feel that I was carried through treatments.  About the only negative side effects that I came away with were Lymphedema in my right hand and arm and difficulties with memory.  Other than that, all my treatments stayed on schedule and negative side effects were minimal.  I am so grateful for that!  When people say to me, "you were amazing during all of that," I respond, "That wasn't me, that was the enabling power of the atonement, and the prayers that were offered on my behalf."  I could feel such strength, peace, and comfort come to me as a result of people's prayers.

Getting back to my "new normal?"  Well, that has been a bit like this: it's like a toddler that is learning to walk.  The parent places the child on the ground with confidence.  They know the toddler is ready to walk on their own.  The toddler, is ....not-so-sure, and begins to whine and cry.  They want back in the parents arms!  They were cozy and comfortable.  The parent gently coaxes and encourages.  They aren't going anywhere and are following closely in case they need to catch or help steady the toddler.  But the toddler is not yet confident.... That confidence will come with time and experience.  I hope that to be true for myself as well.

Relay for Life

I don' think I ever wrote about this.  Back in March, Maya did Relay For Life through her National Junior Honor Society.  We decided to take part and support as a family.  Thanks to our neighbors and friends, we were able to raise $700.00!  We all wore our Desert Hills Soccer shirts from Vince's soccer days.  The shirts had his old jersey numbers and name on them.  It was our way of having him with us in that experience.  Interestingly enough, he had taken part in Relay For Life the previous 2-3 years as part of SUCCESS Academy.  It was very wet!  Fortunately, we finished our laps before the major rain.  

New look

This is what I do while I am waiting on my hair to grow out.  It is so curly, all I can do is tie on a band of fabric.  I am starting to get them in all different colors so I have one to wear with everything.  Helps me to look more feminine, I think.  I try to buy very light or thin fabric, otherwise it gets too hot here in the desert.  Tight curl.

Cancer Transitions

I am attending a support class called, "Cancer Transitions."  It is supposed to help us move beyond cancer treatment and cope with common issues in getting back to life again.  There are 8-10 of us that meet once a week from 5-7:30 pm and work with our nurse navigator out of a workbook.  We have healthy snacks and have had an exercise specialist come teach us exercises each week.  They have given us very nice pedometers and we have had a dietician and social worker come and speak with us.  I am really enjoying the class and the ladies in it.  I am the youngest, the rest have me by at least 10 years or more.  Most of us have had breast cancer but one gal has had rectal/anal cancer.  We have 6 sessions to attend.  I hope to be recovered enough from the latest surgery to attend this Tuesday's class.  

Speaking of which, Wednesday the 3rd, I had my final treatment/prevention surgery!  I am relieved to say that so far, I still feel like myself.  Hope that will continue.  I am 4 days post op, so a lot can change.    I had a hysterectomy.  They took my ovaries and Fallopian tubes as well.  This will put me in to menopause and some of those side effects can be pretty drastic.  Here's hoping that they will be bearable.  It's not likely that I will get through menopause without some discomfort, just don't know what those discomforts will be for me or when they will begin.  I seem to remember reading somewhere that within 3 weeks or so I will see some changes.  Time will tell.....

Right now, I have some soreness where everything was taken and a little bit of pain while my bowels and urinary tract are trying to resume their former functions.  I am not supposed to lift anything for the next while and have been resting a ton and taking short walks around the neighborhood.  Our church family continues to take wonderful care of us.  People have been bringing us meals for dinner since Wednesday and will continue through Thursday!  Thank you, thank you!  I can just rest and recover.

 ☺️.

Lymphedema management

Still meeting with my Occupational Therapist to try to get my swelling down.  She continues to instruct me about Manual Lymph Drainage.  It is taking awhile for me to learn it.  One of the things that could help is to have John wrap my arm with ace bandages every night.  Wear my compression arm band during the day and wrap at night.  Sometimes, all that I need to do to manage my health/body feels overwhelming.  Exercise, drink tons of water, MLD, eat right.  I hope that my "new normal" post cancer will one day feel....normal. 

What a difference a week makes!

Phew!  One week later the relief is immense!  I continue to put a very pure form of aloe Vera gel and Aquaphor on the radiated site morning and night.  I am now back to wearing all my normal clothing!

Better or Worse?

John suggested that I take pictures of my radiation-rough spot from week to week to help me see the changes taking place.  The hope, is that I will see progress from week to week that I can't see from day to day and that will give me a psychological boost and a feeling of well being.  So, here it is.  1st week after being done with radiation.

My final surgery to prevent reoccurrence of cancer- hysterectomy, is scheduled to take place June 3rd. A little nervous since I am not supposed to do hormone therapy to help with mood swings and such.  This is due to my "Triple negative" status.  The last hurdle to jump as part of my cancer treatment!  I won't worry about surgeries for reconstruction until the children go back to school in August.

Radiation, DONE!

My 28th and FINAL day of radiation, YESSS!!  The Dr's office presented me with the above certificate and more importantly a Lindt hazelnut/milk chocolate bar, MMMMM!!  I thought that was a nice gesture.

One of the three areas that received radiation is very tender.  The armpit.  It gets chaffing from my bra and compression arm band so I have had to switch things up a bit.  I hope it will heal quickly.  I keep using the "Earths Daughter aloe Vera," Miaderm and Aquaphor the doctor gave me.  Yeowza😣!  

Hair growth at 3 months

Loo

More hair, YAAY!  Looking at the difference between last ,month and this month, I am going to have to say that the Nioxin products are doin' their thang!  Thanks to my stylist Stefany Thornton for telling me about them!

Managing Lymphedema

During my second week of radiation, I noticed/felt that my right arm was swelling.  My Lymphedema seemed to be getting worse.  Radiation may have something to do with that.  I decided to check in with my Occupational Therapist Elsa.  I hadn't seen her since last November.  She has taught me about  Complete decongestive therapy (CDT).  It includes wearing a compression sleeve, Manual Lymphatic drainage (MLD is a type of gentle massage which promotes the natural drainage of the lymph, which carries waste products away from the tissues back toward the heart), wrapping the arm, exercise, and other self care.  Pheeww!  Learning to manage Lymphedema can be quite a task.  

I was right about the swelling.  The blue bar in the bar graph pictured above, represents the size of my left arm.  The red bar, represents the size of my right arm.  The first set of bars shows the difference between my arms when I first went to see Elsa last November.  The sixth set of bars was my last visit with her. What a difference!  

The last set of bars shows my current edema.  I had progressed to 13% which is considered moderate Lymphedema.  Elsa suggested that I have John come to my second visit so she could show him how to help me with MLD as well as learn how to wrap my arm.  I wore the wrapping on my arm overnight and removed it this morning.  My arm looks and feels so much better!  I think wrapping will make a BIG difference for me.

Feeling.......?

I often look for images or art work that can convey what I am feeling in a given moment.  I think this woman/statue represents some feelings I have been grappling with lately.  I have been "listening" to the feelings and trying to make sense of them, trying to understand them.  Loss..... I feel like I have lost a sense of normalcy through the ongoing cancer treatments.  I certainly have lost an ability to work in the same capacity I was accustomed to before.  I am REALLY bothered by that and wondering if I will ever get back to "normal," in that regard.  How things were BC (before cancer).  Maybe I never will.  Perhaps I will come to construct a "new normal" and learn to be okay with that in time.  I hope so.

I am learning that I can mourn character traits that were important to me.  Some traits make me feel like....me.  When I no longer seem to have them, I miss them.  (Multi-tasking, anyone?  Maybe losing that ability isn't so bad....)

On the flip side, I can see myself shedding some undesirable traits as well.  An unforgiving heart, for example.  An ability to let go of past hurts and perceived wrongs.  Grudges that I held on to for years, going..going....GONE!  Now, if I could just figure out how to keep all the good traits/abilities from BC and lose all the bad traits, then I could be SUPERWOMAN!!

Change....

The one sure thing in life...... is change.  I have had a lot of thoughts and feelings running through me lately.  It has been difficult to find the time to sit down and write about them.  SIGH.....Time management, just one of the many things that I am finding different/challenging since my latest surgery.  

Physically, I am feeling pretty good.  I have started riding my bike and going for long walks.  Trying to recover some of the physical strength lost since my most recent surgery.  Physical strength is not the only thing that seems to come and go during my cancer treatment.  Right now, I seem to be struggling with memory (chemo fog-BIG time) multi-tasking, focusing, organizing, and the ability and desire to get through my beloved to-do lists. 

 I have been challenged on this front before.  Long ago, Fibromyalgia forced me to accept that I have different limits than my peers 😒.  It was difficult at first.  I experienced anger and frustration that I didn't have the energy to do everything I wanted during the course of a day.  If I did "too much," I would pay for it with muscle aches that felt like the flu and a day or two in bed.  BLAAHH!!  Now I am moving at an even slower pace.  I don't know why this is taking me by surprise. After all, it is cancer treatment, not for the faint of heart.  I continually bump up against my lack of patience in one regard or another.  

Lots of opportunity to increase my patience throughout this experience, Ha Ha.  I am reminded of a scene from a movie (of course I can't remember the name of it with my chemo brain right now.) But a woman is speaking with God. In her previous prayers, she asks God to bless her with patience.  In the conversation, she questions why her patience has not improved. God tells her that when she asks for patience, He blesses her with the OPPORTUNITIES to choose to apply patience.   In our human way of doing things, we ask for a change and expect it right away.  That is not always God's way.  I am trying to trust in His timing and His way of doing things.

HAIR we go again!

2 months worth of growth.

So excited and impatient about my hair continuing to grow!😝  It is not coming back in a uniform manner or as quickly as I would like, but it is coming back!  My eyelashes and eyebrows are about 90% gone.  Wondering when they will start to come back.  Sure hope it will be soon.  Our family stylist told me about Nioxin products so I am going to give them a try and see if they help with growing the hair.... Time will tell.

Happy Birthday!

This is the Birthday card my father sent to me.  It has a great reggae happy bday tune.  Keep singing it over and over!  Today is a great day because I am alive and breathing and just feeling pretty good!  Cancer has given me a whole new perspective on Birthdays.  I no longer struggle with getting older!  In fact, I embrace it, I celebrate it!  Another bday, means I have been here on earth with my family and friends another year and I hope to be here for many more!  It is a time to celebrate living and life, and that is just what I plan to do!

PAIN

This is a picture of a Jackson Pratt drain.  After Last Tuesday's surgery, I went home with two of these. The long plastic part labeled "a" , is the part that is inserted in your skin and allows drainage to be collected through the tube into part "b."  You empty part "b" at various times through out the day and when your drainage is down to a certain point, you can have the JP removed.  And by removed, I mean that they just pull it out of you.  No anesthesia, no nothing, just pull.  Yeah, it's a fun one.  I had one removed from the initial surgery to remove the tumor and lymph nodes last August.  I drained for a month before the JP could be removed.  Wasn't bad at all.  

So yesterday, I go back to see the plastic surgeon for my first post op visit.  I am in a ton of pain already.  I would say, a 6-7 out of 10.  The Lortab isn't that helpful.  Hoping he might take pity on me and prescribe something stronger.  Nah.  Drainage is where it needs to be, It's time to take out the JP's. He preps me with, " Now you are going to feel a pull." Pull?  Are you kidding me?!! It felt like he stabbed me in my ribs!! So I go from a 7-9/10 on the pain scale.  I'm having a hard time breathing, sweat is building up all over my body.  I feel like I am going to throw up, pass out, or die (whichever comes first).  

My husband gave me a priesthood blessing and I all I can say is that the power of God is real. Not all of the pain and discomfort were taken from me, but the unbearable pain was.  Today, pain has been under control until the last 3 hours.  Having a hard time breathing and can't sit up for very long.  It has been a loooong week.

Post surgery stroll

John brought Jamison and Sophie to see me at the hospital on my second night there.  They took me for a walk to help avoid blood clots.  The last couple of days have been rough.  The pain meds they sent me home with just don't do as good a job as what they were giving me in the hospital. 

Fuzz! At 1 month of growth!

Can't wait until I have this much fuzz all over my head!  1 month after we first noticed fuzz!

"Ladies in Pink" lunch

Went to lunch with a few friends to celebrate the end of chemo!  All my friends dressed in pink and we saw this little cutie who had just come from her ballet class.  I asked her mom if I could take a picture and explained why we were all out for lunch.  An interesting conversation ensued about cancer and cancer treatments.  I decided to take her presence at our celebratory lunch as a sign that all will be well!  Just looking at her made me smile!

Last day of Chemo!

Here I am ringing "the bell," on my way out of the infusion room.  It's a lot smaller than the Liberty Bell but I feel "Free at last!"  5 months of chemo....DONE!!  Thank you to everyone who has been saying prayers for me.  Surprisingly, my chemo experience has been pretty good and I attribute much of that to all of the prayers.  The power of prayer is real .  

I only got sick, twice on the adriamycin and cytoxin.  The last 3 months, I have tolerated the taxol with very few side effects.  Those side effects have been bearable.  Slight neuropathy in my thumbs, with the nail peeling away from the nail bed.  Strange looking but not painful.  A little neuropathy on the bottom of my right foot, again, very mild.  The steroids they gave me as a pre-med stimulated my appetite so I have had a huge appetite and insomnia the night of the chemo treatment.  Last but certainly not least (according to my family!) I have become a perpetual gas cloud moving about the house!  I emit strange noises and strange smells on a fairly regular basis!  That and hot flashes have been the most irritating.  I have been pretty tired as well, sleeping in until 10 am every morning and taking lots of naps.  So, not too shabby!  Still well enough to make it to most of the kids games/activities and church on Sunday.  Both of those were very important to me.

"The Ugly Duckling," phase.

For me, breast cancer has struck at the very core of my physical-feminine attributes.  Currently, I am bald.  When all is said and done, I will have had both breasts removed as well as my ovaries and Fallopian tubes.  I am ever so grateful that I bore all 4 of our children earlier on in life.  Thus the removal of my feminine body parts is not so tragic.  At least not from a reproductive stand point.....

There is a part of me that looks forward to having my breasts GONE for all the trouble they have caused lately!  After all, they almost killed me!  Yet, they also nurtured our children as infants and gave me a strong feeling of femininity.  I definitely have mixed emotions about the upcoming surgeries.  I am scheduled for the bi-lateral mastectomy February 18th.  

These days when I look in the mirror, I have to look very hard to see any semblance of the old Shanda. I have to remind myself that this phase will pass and that the swan is lurking just below the surface waiting to make a reappearance given time.  Fortunately, God is not "looking at my clothes, He's looking at my soul!"

Fuzz!

What's that?  The back of my head.  I am very excited to share that I have Fuzz growing!  I didn't think I would start to see hair growing back until a month or so after I finished the Taxol.  Not sure if it is actual hair.  Different places have different textures and colors coming in.  Some hairs appear thick, coarse and dark.  Other strands appear like the fuzz new borns grow initially.  Some strands are gray.  Quite a few actually.  I didn't really have gray hair before but have been told that after chemo, when the hair does grow in, it can be completely different than before.  Color, texture etc.  My hair was so curly before, if it gets any curlier, I won't be able to get a comb through it!  Maybe it will grow in straight?  Any predictions?

Remember to Pray....

The Young Men and Young Women groups from our church passed these around our neighborhood tonight.  Bright spot in an otherwise difficult week.

I have had some rough days as I got sick with a nasty viral infection 10 days ago.  On day 5 the virus settled in to my sinus's and caused a major ear infection.  Ringing in the ears and overall dizziness along with a fever.  The doctor gave me a rocephin injection and then prescribed some antibiotics to take orally.  The last couple of days have been discouraging.  So to see these Lillie beauties on my doorstep, well it really lifted my spirits.  

In the mean time, several families from our Ward (church congregation) have brought dinner to us every night for the last 3 nights. Thanks to the Johnson's, Hughes, Wheeler and Ohlsen families!  

Last but certainly not least, I got a call from one of the Counselors at Maya's school and they want to donate the proceeds from an upcoming " Relay for Life," to our family.  

The support we continue to receive from our neighborhood and community through this challenging time astounds me and inspires to me to, "Just keep swimming."

Go see Meet the Mormons!

Stuart Scott

Stuart Scott died from cancer a couple of days ago.  I wasn't a fan.  Soccer is about the only professional sport that I would be interested in watching.  That or maybe volleyball.   I don't watch any of the sport newscast shows so I didn't even know he was going through cancer treatments until he was gone.  I watched a clip of him accepting an award from ESPN.  He said, "You beat cancer by how you live."  Now.....I am a fan.  That statement really resounded with me.  I hadn't used those words to describe my philosophy or perspective on life with cancer. The closest I came to it was something like, "I want to learn to live with cancer, not die from it."  But his phrase really captured the essence of what I have felt since my diagnosis.  I want life to go on as normally as possible for me but most especially my family.  Live and do as much as I can, as much as we can in the ways that we have always done.

When I hear of someone dying from cancer, it affects me differently than it used to. I linger over the loss longer and feel compassion for the deceased and their loved ones in a way that I never used to.  It just feels more personal because of the shared experience, I guess.