Tuesday, March 24, 2015

The state of me and girls names that aren't the names of girls

I have been off chemo since December.  It didn't start off as a plan to be off for that long, but there were the holidays and then I started having such intense back pain we wanted to get under control.  That pain became debilitating, traveled down my leg and progressed from numbness and difficulty lifting my leg into the car became an inability to walk without focused effort and excruciating pain.
One Monday I was in bed when a friend called.  I had been crying and praying for help when she rang. I answered the phone in sobs.  She dropped everything and took me to the ER where a lot of drugs and a couple of follow-up appointments later I found out the cancer spread to the nerve endings in my spine.  I began radiation and got relief within days.  My leg is no longer numb.  I can lift it again and have recovered a significant amount of strength.  It is truly miraculous to me how quickly I went from traveling across the country for the holidays and then work to being unable to get out of bed and then was back to work again. Another proof-case for the need to enjoy every good moment of your life, and treat all of them like they are good because tomorrow may be so rotten you will wish it was today again.
All this time off chemo has given me so much to be thankful for.  I could say it shows me how much I have been missing, but that just sounds sad and makes me feel low.  I prefer to see the glass half full. 
I have hair.  It took about 2 and a half months to grow enough eyelashes and get them thick enough that they brush on the lenses of my eyeglasses.  I also went in and got a haircut - something I haven't done in about 2 years with the exception of having my neck trimmed once.  I loved it even though I knew I would be loosing my hair again soon.  That day it needed cut and I just enjoyed that experience rather than debating if it was a waste of time and money. Living for the now!
I have also had a different parenting experience lately.  More energy and strength means more normal activities like running errands and crafting and cooking.  I forgot I liked to cook.
My entire body feels different than it has in a long time.  Is this how the rest of the world feels?
But, the chemo-cation is about to end.  T minus 1 day until they start dripping the next hope for NED (no evidence of disease) into my veins.  I have been reading up on all of the studies again.
I have read about Marianne, Th3resa and Emilia - all girl names and none referring to a girl.  These are drug studies for chemotherapy protocols for metastatic breast cancer treatment.  My most recent regimine, Herceptin + Perjeta + Taxotere, sent me to the hospital for vomiting 2 out of the 3 weeks I was getting treatment. I also had migraines and dreaded simple things like walking from the car to my office.  We are now looking to switch to Taxol with Herceptin and Perjeta if it is approved by the insurance company. 
A few weeks ago I took the Herceptin and Perjeta without a chemo agent.  I still had a migraine, though much more mild - only one day - and I recovered to a near normal energy level after 2 days. 
Anticipating what will happen with this round is stressful.  What will I feel like, will it be manageable, and if not, how bad will it be?  I don't think the kids can cope with Mom staying in the hospital again.  I don't know if I can cope with feeling rotten after feeling so good.
So, I know the anxiety will grow over the next day and a half.  But, I also know that God is with me - He is in control and has the power to see my little family through whatever is coming.
So, in spite of the nerves and unknowns, I move forward with conviction and gratitude that I am not alone.
God bless us, every one.

Monday, January 12, 2015

Why women need friends

I have enjoyed a string of happy weeks in a row.  It started with Thanksgiving- my favorite holiday. We had another great year celebrating with friends. It's always so great to be at their house because it is a happy place and they are all (adults and children) great chefs and bakers! 
Next, with the generosity and love many, we spent Christmas in Utah where I grew up. I loved being with most of my family, baby bro couldn't bring his new bride home, but the rest were together. And, I got to connect with many friends including my best friend since 1st grade. 
And, after Christmas a couple of friends from Idaho came down to Texas to make life easier for me by storming in and cleaning the house and putting together freezer meals. 
From my first grade bestie to these awesome women who became dear friends after I entered motherhood I am reminded how valuable friendships with other women can be through out life. 
Having women who see you as you are, admire your talents, accept your short falls, and make you feel good about who you are and what you can still become - does it get better? 
If your friends don't do this for you - get new friends. 
I am so glad for these happy weeks. My soul feels refreshed. I am going to use this fresh feeling to approach the coming treatments with a brightened outlook. I have grown so weary from treatments and hospital stays over the last years, especially in the last 4 months. 
I am going to take a snapshot of this renewed feeling so I can remind myself in the coming weeks. 

Saturday, January 3, 2015

New year, same disease

We have just returned home from 11 awesome days with family. I don't make it back to Utah often- it's just so far away, takes so long to drive and the cost of airfare is insane. This was our third visit in the 6 years we have been away from the region and was the most enjoyable for sure. It was so fantastic to see the mountains and be with my sisters.
I loved getting reconnected with nieces and nephews- all amazing kids with great parents. I am so grateful that even those little ones who don't know me well endured the hugs and kisses with giggles and loved me back. 
While being away from my cancer was a good change I started having really intense pain in my hip and numbness radiating both down my leg and across my stomach. No question something is happening. The Dr. thought it might be arthritis, but it feels more significant than that now. Even getting back home to my bed I am having trouble. I am also noticing some swelling in my leg - I think it could by lymph fluid that isn't draining. Ugh!  
I had some testing before leaving town. Now I have a couple of intense days at work before I will be back at the Dr.  I am feeling concerned about what it is going to be. My greatest fear is a spread of cancer in the lymph nodes around my hip. That would mean this chemo isn't working and we need to switch again. What will the next one be? How will the side effects be? How long will it work? And, why isn't this new cocktail working?  
I like to joke that maybe the answer is that I don't even have cancer. LOL. 
I feel like I have aged 10 years since starting this new chemo around Halloween. I feel pale, my eyes dull, my skin old and my spirit less hopeful. 
Add to this the worries about loosing my FMLA qualification since I am moving to a new employer (same job) and I am truly worried about the future. 
What happened to my faith? 
I am completely dependent on the Lord and the mercy of others if things take a downturn. And, it isn't that I haven't been blessed by both, it is just the potential for a perfect storm on the horizon. 

Let go and let God. 

Tuesday, December 16, 2014

Facing the long day ahead

When a coworker is the one to remind you of your bone scan there is reason for concern.
I knew I had the test this week, but there was no part of my brain that cared which day and no part that felt the need to get organized.  Leaving work last night MS wished me luck on my bone scan tomorrow (today) and that is when I realized - I had not even cared when it was.  Is this a sign of exhaustion, becoming numb to the volume of medical appointments or complete apathy? I don't know, but even being here this morning I am somewhere between annoyed (I hate it when the treating facility asks me to complete a medication list!) and wondering if tears are just going to start falling.  I don't have any particular reason to cry, but I am that kind of tired.  When I feel like this I feel like a child.  You know, children cry when they are tired, not for any reason, but because they just can't be awake anymore.  And, while I am sure I could fall asleep with very few comforts, it is a different kind of tired - bone tired where no amount of sleep alone is going to resolve the problem.
I also feel an overwhelming sense of stress. I am stressed about medical test results, taking this chemo that has landed me in the hospital twice in the 3 cycles, Christmas gifts and visits with family, and work. Add to this the upsetting phonecall I got last time I sat in the cafeteria waiting for this test last time, and I think I would like to crawl under a rock right now!
I am going to be glad when this day is over.  And, tomorrow I am going to get back to being myself.  I am going to be happy and optomistic.  I am going to have hope and be excited about Christmas.

Tuesday, November 4, 2014

My experience with Herceptin, Prejeta and Taxotere

I am on day 20 of my first 21 day cycle, so me experience at this point is very limited, but not only is it good for me to think through the side effects of the drugs before meeting with Dr. J on Thursday, as a cancer patient it is invaluable to consult the experience of others to anticipate what a new treatment will be like or to check my side effects against what other experience.

Granted, no two people respond the same to these drugs.  Interestingly enough, two people with similar cancers can get the same drug and have some similar results and some wildly different.  I think this is puzzling and strange.  If two people take Tylenol the experience is similar.  As is the case with many other drugs - but not so with chemo.  So - if you are a cancer patient and reading this to see what it may be like for you to take these drugs - remember it could be different, and hopefully easier for you. 

When Dr J described these drugs she explained the side effects should me minimal.  Hair loss was practically a guarantee.  I have a sliver of hope still that I will keep my hair.  However, for the last week or so I have been feeling the hair loss start, and yesterday it began falling.  I suppose I will be bald again within 2 weeks.  I could begin a rant about how much it sucks to match headscarves to outfits 7 days a week, but instead I will speak out for the bald babies of the world.  So, being bald is cold.  Give your infants a break and put a hat on them all the time.  Even in the summer.  Having the sun shining on that tender skin hurts.  Don't assume your baby wants to be cooler by not wearing a hat.  Protect their heads.

Losing your hair  - what is it like?  When the chemo begins killing the hair follicles, which causes the hair to fall out, it feels like I have been banging my head against a wall or been hit with a baseball bat. If I touch my hair and cause it to move at all it hurts.  If I touch my scalp it hurts. The pain intensifies as the hair loss continues and my scalp is tender for a short time after I am totally bald, but it hurts less when the hair is gone.  However, within days of being bald it doesn't hurt at all anymore. Being bald is really cold in the winter though.  After I lost my hair the first time, whenever I saw a baby without a hat or cap on I would be angry. So, being bald is cold.  Give your infants a break and put a hat on them all the time.  Even in the summer.  Having the sun shining on that tender skin hurts.  Don't assume your baby wants to be cooler by not wearing a hat.  Protect their heads.

I have also been dizzy almost everyday, all day long since my first treatment.  Chemo can do this to varying degrees.  And, it has been like that for me.  Some days I am manage better than others and some days the dizziness causes nausea.  It is best when I don't move - just stay at my desk and keep my chair still.  But other times, like today, even laying down I feel like I am swaying and it is a challenge to accomplish normal tasks. 

My first treatment left me with awful headaches and nausea.  Nothing I had used in the past to treat these came close to stopping the problem, so I landed in the hospital.  That story is in a previous post,Biopsy results, Cleopatra study and totally bombing my first treatment

I am emotional.  I have cried more in the last 3 weeks than I have in years.  I swear it is true.  The other day I heard a song on the radio as I drove into work, "I loved her first" about a father telling his daughters new husband to remember that this woman is always going to be his baby and should be treated right.  My kiddies can't even drive yet, but I bawled for the day when I will have to trust someone else with the care of their hearts. 

My crap-o-meter is maxed out.  When I see something that isn't right I can't hold my tongue about it as I usually do.  While there are a couple personal examples of this I am not going to share them here.  One I will share is this, last night as we attended the National Junior Honors Society swearing in for my daughter they played the national anthem.  A middle school age boy was in the row in front of us.  He had some change in his hand and kept clanking it.  I wanted to stop his forcefully but I managed to just tap his shoulder and tell him to be quiet.  This coin-in-his-hand boy is a culmination of the emotions, headaches and crap-o-meter failures.

Basically, this regimen sucks.  I read about a number of patients with minimal side effects.  For me, this has been like going back on the hard chemo I took in 2006.  I have thought a lot about stopping cancer treatment all together.  If I ever need to make that choice I want to make it early enough that I have a decent amount of time where I feel healthy so that I can make the memories I want to outlive me.  I don't want to be in treatment up until the time I have no strength left and the only memories of me are the ones where I was sick, tired, dizzy and miserable. 

But, for now I am going to take it one treatment at a time.  I am going to get chemo this week which can be translated to, I am going to live beyond my means and spend money I don't have on drugs that make me nearly useless to the world and my family because, although I don't even have enough hope left to feed an ant others do.  I am going to put my faith in their hope and prayers because I want to be there when my kiddies choose someone to marry so I can warn him about the fear he will live with if he betrays their hearts.