Friday, October 23, 2020

It's kind of odd how being a cancer survivor just kind of became part of my distant history.  Nothing going on, nothing to write about, right?  So, I didn't post anything.

I went to ALL my check-ups.  I followed up on anything and everything that I thought might be a concern--even straying over the line into the "overly cautious" camp.  But I wanted to make sure I didn't miss anything!  

In July, I went in for my usual check-up.  All my labs looked good.  I was feeling very tired, but I have felt very tired since I finished chemo.  I never did bounce back to "normal," so I just thought everything was fine.

I had a little cough all summer, but figured it was probably allergies.  Nevertheless, I went to the Dr. in August and had a chest X-Ray.  Everything looked good.

In September, right before Labor Day, I started having intense pains in my right shoulder and the right side of my neck.  I had had a few stabs of pain in my right lung area upon occasion during the summer (right behind my right breast, deep inside) but I didn't think much of it.  I also had an occasional "pinch" in my back, when I was laying in bed, if I was in a certain position.  Again, I didn't think anything of it.  These things were infrequent, and I have gotten used to weird pains here and there.  That's part of my new body.  But the shoulder pain was pretty intense, and that got my attention.  Kind of.  I just assumed I had injured myself in some way.

On the afternoon of Labor Day, I started getting a sore throat.  The next day (Tuesday) I just felt wiped out--really yucky, and I took a couple of short power naps whenever I could squeeze them in.  The next day (Wednesday) I felt a little better, but not good.  The next day (Thursday) I felt a little worse again, and had a little nausea.  By the afternoon, I started feeling really yucky.  I was wearing a jacket, under a heavy blanket, laying on the couch in direct sunlight and freezing.  I decided I better have a Covid test just in case.  I called to make an appointment for one the next day and then barricaded myself in my bedroom, where I stayed until Friday morning.  I went down for the rapid Covid test; when results came back, they were negative.  So, I thought I had a little virus and I just needed to wait it out.  By Friday afternoon, the shoulder pain and neck pain got so intense that it moved up into my neck and all the way down my side.  Taking a breath became painful, so I finally went to the Dr.

Her initial thought was that it was pleurisy.  This seemed like a logical diagnosis; I had had it before, and I had some lung damage from radiation.  She ordered a shot of Toradol (bless that shot!) and sent me to have X-Rays and labs just to make sure it wasn't anything more serious.  The Toradol worked wonders for the pain, and when I left the hospital after all the tests, I was feeling good.  I got about halfway home, and received a phone call from the Dr.  Some of the labs had come back elevated, and I needed to go back to the ER; it could be a possible blood clot.  So, I turned around and went back.  Spent the evening of 9/11 in the ER, getting a complete work-up.  Long story shorter, CT scans of my abdomen revealed the problem--my liver was mad at me.  Neither the radiologist or the ER Dr. could tell for sure why, but neither possibility was good news.  It was either cirrhosis of the liver, or metastatic cancer.  They couldn't tell for sure because the liver was "fully involved" with whatever it was.  Well, the cirrhosis idea really threw me.  Upon my honor, I have NEVER had even ONE alcoholic beverage in my whole life, and I have NEVER used any kind of drug recreationally (prescription or otherwise.)  Then I learned that Tamoxifen can cause cirrhosis and that there is a kind of cirrhosis called "Non-alcoholic cirrhosis" or "fatty liver disease."  Well, OK.  Not good news, but it seemed like a logical possibility.

A follow-up biopsy revealed the awful truth; it was metastatic breast cancer, and my liver was fully involved.  I cannot describe the shock I felt.  Honestly, it was like getting hit by a train that you never heard or saw coming.  And then you are plastered all over the tracks trying to pick yourself up and figure out how to move on.  There are no words that adequately describe that feeling!  

Looking back, there are a few little symptoms I missed.  But when I say "little" I mean "little."  They were so subtle!  The good news is that something made my liver really mad and it flared up so we caught it earlier than we otherwise would have.  That being said, it isn't early.  My whole liver is involved.  And as one of my oncology providers stated "it is treatable but not curable."  

I have had about 6 weeks to try to get my head around it all.  I have to think about the future differently now.  My baby (who was 19 months when I was diagnosed the first time) just turned 8.  My bucket list will never get done.  Most days that doesn't matter a whit to me now.  Most of the time I don't care that I won't get to do the things I had always hoped I could do in the proper "season."  It's hard to get my head around that.  However, I can give those things up.  But my kids!!!  I don't want my kids to lose their mom so young.  I want to raise them to adulthood.  It seems a little dumb to say I don't want them to lose their mom, because as one relative said "no matter how old you are, you always need your mom!"  So, it really seems silly to say that I want them to be older before they have to face that.  They will never really be ready.  But I don't want them to have to deal with the loss of a parent in their teenage years.  I have seen the effects of that in the lives of others, and I don't want that for my kids.  And yet, there isn't really all that much I can do.  

I am learning a lot (again) about trusting God.  I am learning a lot about what faith really is.  Others have given me advice that has helped me to sort it out a little bit in my head.  I kneel down and tell Heavenly Father what I want, and how important it is to me.  And I ask Him to allow me to live to raise my children if it's His will.  And then I leave it in His hands.  And I go to the Dr. and I get treatment that I am hopeful will extend my time as long as possible.  I hope it will be at least long enough to prepare my husband and my children for the time I won't be here.  I didn't realize how much I really do until I contemplate trying to help them learn how to do all the things I always do, and have always done since my husband and I were both very young (naive) adults.  It still feels very surreal, like I am living someone else's reality.  

Some days myself and the other members of my family accept it as it is, and other days we are just really sad.  One thing we did right is that we talked about grief, and what it is.  I told my kids they will probably have some strong feelings that might even surprise THEM, and that's it is ok.  I posted charts about grieving on the fridge.  What a strange thing this is . . . to try to help your children through their grief before you die, all the while trying to process your own grief.  Weird.  

One of the things that bothers me the most (aside from the weird things that some people say) is when I see people who are older and seem healthy going about their lives.  I wonder "do they know how lucky they are?"  Probably not.  I didn't ever think about how lucky I was when I wasn't in the middle of a fight for my life, either.  I wish I hadn't been so blissfully unaware.  I shouldn't have been so unaware!  But life got busy and gratitude for health moved to the back burner.  I regret that.

But, in all of it, there are some blessings that I need to acknowledge.  1.  That my liver got really mad and got my attention.  Since then, it has simmered down and most days, I feel almost normal.  2.  Most days, I feel almost normal.  3.  My cancer changed, which is rare, and the way it changed opens up some more treatment options.  4.  I have great friends and family.  My family members have all given what they could, especially my parents, to help my family in any way they could during this.  It's going to be a long haul.  I hope I don't burden them too much.  SO MANY friends have given me great kindnesses.  All are appreciated, but because it's part of a story, I will just mention three here . . . my sister arranged to have a photographer do family pictures for us.  I am so grateful; right then I was dealing with insurance and appointments, etc, and was way too overwhelmed to arrange family pictures, too.  A friend gave me a free haircut and style so I could look good for our family pictures (and even came to my home to do it.)  The photographer wouldn't accept money for her sitting fee, even though she spent literally hours taking pictures of our family.  5.  I hoped I would be able to keep enough hair to look relatively normal until after we had family pictures taken.  But I knew it was going to be close.  Well, my hair hung on just long enough for the pictures!  We had pictures on Saturday (October 17) and it started coming out in big clumps on Tuesday (October 20) so we just shaved it.  But I still had hair in the pictures!  With no hair, I am feeling ugly right now, and I am so grateful I didn't have to have pictures taken feeling this way.  6.  I had an MRI on my brain to see if any cancer had gone there, and it has not!  Another blessing!

I would not have chosen to have my cancer come back.  I am still struggling to accept the reality of it all.  But there are a few things I know: Heavenly Father is aware of me and my family.  This was a surprise to me, but not to Him.  I also know--really know, in a way I can't explain--that He has a plan in place for my family, and this is part of that plan.  I am 100% certain of that.  There are lessons to be learned here, and the only way we can learn them is to be forced to stretch--to have our faith tried in ways and in levels that it never has been before.  I am trying my best to rise to the challenge before us, and to help my children to do the same.  Somehow, I know this will all turn out ok, even if I can't see the path today.  I just have to keep hanging onto that.

Thursday, April 14, 2016

Okay, I have to be fast because I think my son needs the computer to write a paper . . .

First, sad news.  My aunt has breast cancer---the same kind that I had, only hers is Grade 2, and we are thinking probably Stage 2 (?).  She hasn't seen the oncologist or surgeon yet, so I don't know what they are going to recommend.  I mentioned her in a previous post--she is the aunt I talked to at my sister's wedding the day after I saw my oncologist.  It seems so unfair--she has already been through so much.  But, I was listening to a talk from the most recent General Conference today, and it talked about how life is never fair, and the greatest evidence of that was the life of Jesus Christ; He was perfect, and yet he suffered all the pains and afflictions that we do, and more.  And, yet, when the eternities are factored into the equation, it becomes perfectly fair, because our Heavenly Father knows and loves us all, and will turn all things for our good.

I think I need to talk to my oncologist---starting to wonder if maybe there is a genetic link after all . . . just not BRCA 1 or 2.  I tested negative for both of those.  My kids better be on the look-out---cancer seems to really run in my family!!!  (And heart disease and blood sugar issues in my husband's . . . my poor kids seem to be doomed.)

Secondly, I had a mammogram today.  The radiologist said it looks good--the same as my last one, which is good news.  I have to say, having a mammogram on the unaffected side isn't fun, but having it on the affected side is pure torture.  All that scar tissue---it really hurts during the mammogram, and it's still sore now.  If someone hugs me too hard, I just might cry.  But I don't care how much it hurts--if it comes back, I want to catch it as early as I can---it would at least buy me a little more time.

I just read my last few posts about fatigue.  Yeah, still have that.  It is amazing how much more tired I am than before.  I have had some people tell me that it's just because I'm over 40 now, and maybe that's true, but it is so much worse than it was before chemo that I really think the chemo is a big factor.  I would like to think it will get better, but if I'm still this tired this far out, I'm thinking I need to just accept that I am going to have some limitations I didn't have before, as annoying as it is.  Whether chemo or old age, I don't suppose it matters--I'm just pooped!!!

Other interesting changes from the chemo:  I have a hearing loss in both ears.  I suspected as much because after chemo, it seemed like I was always having to ask people to repeat themselves.  I finally had a hearing screening at a Health Fair, and ta-da.  Yep.  Hearing loss in the higher frequencies, which is what they typically see in chemo patients.  I also still struggle with chemo-brain.  It is getting better, but it's a struggle.  Learning never used to be terribly hard for me (except for Math and Science), but now I struggle to learn new things of any sort.  I get distracted and forget things.  I struggle with reading comprehension more than I ever did before--I often have to read the same sentences several times before I begin to understand what I read.  I have a really hard time remembering what I have read or heard or done or said or need to do . . . the list goes on.  It is frustrating, but I guess that's the price I get to pay for being alive.  So, I'm grateful, in spite of the frustration.

I have been thinking about how this experience has changed me . . .  I can't even really describe how much.  I still would never choose to go through it voluntarily, but there has been so much growth.  I can't remember if I mentioned this in a previous post, but one of the ladies I talked to just after my diagnosis told me that if she could go back and re-live her life without going through the cancer, she wouldn't do that because she has learned so much.  I am beginning to see what she means, although right now, there's always a little "disclaimer" line of fine-print in my head that says "as long as it doesn't come back."  If I make it 5 years plus and it still hasn't come back, I will probably feel the same way about it.

Well, I need to go put my super-cute little boy to bed.  He just came and told me he wanted me to tuck him in.  I should have done it a long time ago, but I just ran out of steam and gave up.  But, I better get up and get it done.

P.S.  He just came in all excited because he found the sparkly toothpaste I just bought for him.  He is thrilled.  So cute.  I love how easy it can be to please little kids.  They are so pure and innocent.  No wonder Jesus says we need to become like little children.  :-)

Tues. Sept. 15th

I haven't written anything for a long time--mostly because it's been back to business as usual, and that feels great, but BUSY!  I don't think I have ever been this busy before--just trying to keep all our family's ducks in a row, doing bookkeeping, helping with my in-laws, etc.  I have 5 kids in 4 different schools this year.  It's insane, made more so by the fact that I have a lot more trouble remembering things and accomplishing things than I used to.  These days, if it's not bugging me, I forget about it, which means I get a lot of "oops, I forgot to do that" type of surprises.  Kinda scary!  Nevertheless, I would rather be busy than bored, so we will all just keep plugging along and hope for the best.

I realized, about a week and a half ago, that it had been 1 year since my last chemo!  I'm so glad I'm looking back at it now, and that it's done.  Hope I don't have to do that again!

I have a new pet peeve . . . when people complain about getting old.  Sure, I get it that all the new aches and pains aren't pleasant.  Nor is the expanding waistline, or the jiggly "Relief Society" arms, or the wrinkles and gray hair.  Worse yet is when health deteriorates.  I understand all that, but I hate it when people, who seem to be in good health overall, gripe about it so much.  They are ALIVE!  Do they know how many others never got the opportunity to live long enough to "get old?"  (For the record, I give those whose health has deteriorated significantly--whether or not it is "obvious" to the rest of us---a "get out of jail free" card.  They have valid reason for complaint.)  I guess that's just one of those things where you don't realize how much you have to be grateful for until you have seriously contemplated the possibility of losing it.  As for me, I have my sights set on 60.  Don't get me wrong . . . although at one time I would have considered 60 to be "over the hill", I sure don't now.  But by then, HOPEFULLY, my kids will be raised and at a stable point in their lives.  HOPEFULLY I will live beyond 60, and enjoy good health so that I can do some of the things on my ever-expanding bucket list.  But, if not, the most important thing is that my kids get what they need . . .  So, I'm still exercising (somewhat reluctantly) and hoping and praying for the best.  :-)

Well, this is a boring post, but I"m too tired to think of anything else to say.  So, goodnight!

Wed. June 3rd, 2015

I went to the Dr. last week . . . was just worried about that silly persistent cough, and the weird shooting pains in my right side.  Sometimes it feels like someone is stabbing me in the chest under the arm, other times it's a sharp pain that feels like it's coming out of my shoulder blade, and other times it feels like it's deep in my breast, near the chest wall.  The Dr. isn't worried about any of it.  He says he hears ALL the time that women are having shooting pains in their chest.  It is probably the result of tissue trying to heal after radiation.  He said it can last up to 5 years.

As far as the cough is concerned, he isn't worried at this point.  He said it's probably due to the radiation damage on the bottom part of my lung, which is now trying to heal.  Then add a little sniffle or something, and the cough is there "to stay."  I don't cough harder when exercising, I don't have excessive shortness of breath when exercising, I am feeling good and don't feel generally short of breath. I have been sneezing like crazy every morning this week, and have begun wondering if I have some allergies???  Anyway, he said if I still have the cough in a month, we can do chest X-rays just to make sure, but at this point, he is not at all alarmed.  That makes me feel so much better!

One of the challenges with this is that it's hard to find the line between being "aware of my 'new' body" and "hypochondriac."  I don't know where the line is!  But it was a relief to hear that the Dr. wasn't alarmed about a cough that has hung on for 4 weeks.  Whew!

In other random thoughts:
My chemo-brain is getting better.  My calling--that I DO NOT love---forces me to try to think through things.  I sometimes get "stuck" and can't think what to do next.  But I think the process of having to think it through is helping me to re-learn.  Seems silly, but it's real.  I can see that I am making slow progress.

I am beginning to see a light at the end of the tunnel, so to speak.  By that I mean, I am beginning to realize that there really CAN be life after cancer!  The further out I get, the more I realize that I could possibly have a future.  It feels great!  Here's hoping my future ends up being cancer-free!!!!!

I heard on the radio that 1/3 of all women will develop some type of cancer in their lifetime, and 1/2 of men.  Wow---I didn't realize it was that high.  Sad.

Well, I better get my kids and myself ready for bed.  One change I have noticed is that I seem to need a lot more sleep now than I did before.  I don't know why.  Good night everyone!

Monday, May 25, 2015

Wow, it has been a long time since I have posted, and there's a lot to say!

First, I had a great opportunity April 27-May 1 to go to Yellowstone to chaperone my daughter's school class to Expedition Yellowstone!  It was awesome---I learned SO much and it was all so interesting.  But the best part was being able to spend time with my daughter.  Loved it, and would go again in a heartbeat!

My dad got his pathology results back.  It looks like the cancer WAS indeed all contained within the prostate---no radiation or other treatments needed.  The recovery was rougher than he anticipated, but he's doing well.  Just hating all the residual effects (meaning the changes that are a natural result of having had the surgery.)  I understand . . . these medical things are hard on a person's dignity.  Sometimes I still, even a year later, just wish I could have my old body back, cancer free, of course.  But I am so grateful to be blessed as I have, and so grateful that he has done as well as he has.

The lady in my ward is hanging in there.  She hasn't started chemo yet.  I want to help her in any way I can---to pay forward the things so many others did for me.

Today is Memorial Day.  It has been the best Memorial Day I remember ever having.  My dad's first cousin was killed in action in Vietnam, 45 years ago today.  I have grown up hearing about him--and have always felt sad and had a great respect for him and for what he did.  Well, 10 years ago today (was it really that long ago?), his best friend and Platoon Sergeant contacted a Bishop living here, hoping to make contact with any of the family that remained here.  In some ways, his being able to even get hold of the Bishop was a miracle, and the other miracle was that this Bishop happened to be an "old timer" who had personal knowledge of the family, and was able to get the right information to the family so they could make contact.  His buddy has, of course, suffered from PTSD, and it took him a long time to be emotionally able to make the contact (he said he had that phone number for 2 years before he was finally able to bring himself to make the call.)  He came up here and visited then, and the contact has healed both sides.  I didn't meet him then, but heard about him.  He has committed to come up every 5 years.  Well, a few days ago, I found out there was going to be a BBQ with the family and with him, and that all family members that were interested were invited to go.  I had some last minute complications come up, and thought I wouldn't be able to go, and I was so disappointed I cried and cried.  And prayed.  And, miracles happened, and I was able to go.  It was a fantastic experience.  I learned things about my extended family I hadn't known, and gained an appreciation for them.  I "got to know" my dad's cousin, and my respect for him grew even more.  I heard, from the mouth of his friend, who was trying to get to him when he died, exactly how it happened.  I think the most tell-tale thing was when his best friend said, "We were both married.  We weren't the same faith, but we both lived our faith.  We both lived the way we believed."  That told me more about who he was than anything else.  Family members asked questions, and he answered them.  It was phenomenal---a true privilege.  I also met, for the first time, his daughter.  She was 20 months old at the time of his death.  Last night there was a fireside for the youth, friends, and family, where his friend spoke again.  It was again, wonderful, and I was able to hear and see how other people I have grown up with and respected were affected---and still are affected---by his life and this event.  I KNOW that there was direction coming from the other side of the veil, bringing all these things together, and giving comfort and healing where it was needed.  I never knew him, and yet, the knowledge of this event has been a part of our family's story--our history---and so it has had a profound effect upon me.  I got closure this weekend that I never even knew I needed.  Like I said, it was absolutely PHENOMENAL.  I also realized how important each of we "ordinary" people are.  We all touch far more lives than we will ever know.  And so, on this Memorial Day, I say, "Please thank a veteran.  Please think of those who sacrificed for the freedoms that we and others enjoy.  Our country has some issues, true---but God intended for us to be free, and people paid the price to make and keep it that way.  God Bless America!"

In other news (not so happy), I have had a cough since right after I got back from Yellowstone.  I have hoped it would go away, but it has been pretty persistent.  I just left a message at my oncologist's office, asking what we should do next.  The fear, of course, is that the cancer has come back and lodged in my lung.  I cannot even express how much I long for my former naivete.  I wish so badly I could just go back to being "innocently unconcerned" about each pain and twinge.  But I can't.  My "new normal" won't allow it.  I hope there is nothing wrong, but I guess if there is, I will just do the best I can.  I still believe that God has a plan for me, and I guess I will just have to have faith and wait and watch to see what His plan is.  But, boy, it is not easy.

Well, I had better get going so I can go to bed.  I am planning to go on my son's field trip with his class tomorrow.  I want to be as active and involved as I can with my family, because no one ever really knows what the future will hold.  For today, I feel good and can walk and hike and be active.  I want to enjoy that as long as I can.  I need to get a good night's sleep, so Good Night!

Tuesday, April 21, 2015

Sometimes I am amazed as I see things unfold.  Life has a lot of little coincidences, and it's amazing when I am able to look back and see that some of them weren't coincidental at all . . .

I can't remember if I mentioned this in a previous post, but in December, a member of our bishopric (Brother Wells) was talking to me and he asked me if I would talk at a 5th Sunday meeting sometime in the future about the things I have learned through this delightful breast cancer experience.  In hindsight, it seems like he hadn't "pre-planned" to ask me; it seems it just came to him then, though I don't know for sure about that, of course.  I do remember him saying he needed to ask the bishop and get back to me.  I told him I really had no desire to do it, but I felt like Heavenly Father expects us to try to help each other, so I would talk . . . I guess.  He later talked to the bishop and got approval.  During the "waiting time" I began jotting down thoughts, etc, in preparation for that future event.

Fast forward to March, when there was a 5th Sunday coming up.  As anticipated, I was asked to speak.  As I was preparing, I kept thinking about talking about medical stuff--do your exams, what to look for, etc.  As I was preparing, I kept trying to take that part of my talk out, feeling it wasn't super-appropriate to include it in a 5th Sunday meeting, with the youth there, BESIDES which, I don't have any real medical training, and so I don't really feel that I am qualified.  I wondered if we should just do an Enrichment on breast cancer instead, but concluded that since they are generally poorly attended, that might not really help get the word out to the women.  I also realized (sorry to be graphic) that men really do need to know this--sometimes they are the ones that notice there's a problem with their wife.  I was really stewing about this.  One day, a week or so before I was to speak, Brother Wells caught me in the hall at church, and asked me how the preparations were going.  I told him I was working on it, told him my problem, and then asked if it would be ok if I talked a little about the medical angle.  He said he thought so, and the bishop, who had just come up behind him, said he thought so, too.

So, I prepared . . .  I tried to think of which medical things I SHOULD say, and which things I SHOULDN'T say.  It was hard, and it was nerve-wracking.  I gave the 5th Sunday talk, even the squirmy, uncomfortable parts about the medical stuff, and didn't think another thing about it . . . I was just glad to be done!

Last Thursday evening, my visiting teaching partner stopped by, but I wasn't home.  So, when I got home, I called to see what she needed.  She told me that there was a lady in our ward that was there that day who had just found out she had breast cancer.  The next day, I took her some flowers and visited with her.  She told me she had been a bit uncomfortable with the medical part of my talk (I think everyone was!) but had, one week later (on Easter Sunday) decided she should do an exam.  She found a lump, which turned out to be cancerous.  She had surgery yesterday.  She doesn't know her treatment plan yet, but it will include chemo.

This morning, as I have been thinking about the events up to this point, I am realizing how many things that I thought were "coincidence" that are not.  Brother Wells just "happened" to think of asking me to speak.  I just "couldn't" leave out that uncomfortable medical part, even though I kept trying to re-write my talk without it.  This morning, I have been trying to think of how I can best help her through this experience---how I can pay it forward---and all of a sudden, something I saw just last week that may be of help came to my mind.  Coincidence?  I don't think so.

I won't be publishing this post right away.  At this point, this lady is still trying to keep a low profile, as she grapples with the news.  I understand--I've been there!  But when it's common knowledge--it WILL go viral--I'll post it.  And I am going to try my very hardest to pay it forward--to help her as others have helped me.

Sunday, April 26th

I can post now; I've heard it from other sources.  And, as I am usually the very last to hear about anything, I'm sure I can safely assume it is common knowledge now.

In other news, my dad had surgery for his prostate cancer on Friday.  The MRI they did on Wednesday showed that the cancer went to the very edge of the prostate; they were hopeful that it had not spread beyond.  Pathology results will take a week, so we don't know any more yet.

Gotta run---I have a Primary lesson to prepare!

Thurs. April 16, 2015

Just checkin' in . . .

I had a mammogram a few weeks ago.  Everything looked ok.  Whew.  Relief!

And yesterday, I went out to the Dr. to have an ultrasound.  I keep feeling some hard "pinches" in my abdomen.  The Dr. thinks my ovaries are trying to "wake up" but I really wanted to just MAKE SURE we weren't missing anything.  Everything looks good.  Again, relief!

I wonder how long it will be before I stop "looking over my shoulder" constantly?  I don't want to be a hypochondriac, but I have to say, this has really made me so aware of how quickly things can change.

I am doing really well emotionally, now.  I'm enjoying life--trying to squeeze out every bit of joy I can each day.  What a blessing it is to be alive!!!