Struggling & Sunlight

I've struggled this weekend.

My nausea & vomiting hit its peak. Our son is teething. There hasn't been a lot of sound sleep in this household.

Aside from that I'm trying to accept and understand that my cancer is back & growing. Perhaps being naively optimistic, I wanted to be the miracle story of my cancer's inexplicable reaction to chemo. I'd be able to stay on oral meds for a number of years and I'd have a chance to catch my breath from the whirlwind of becoming a mother and receiving a palliative cancer diagnosis.

Ten and a half weeks was what I got. Two weeks were delays in chemo. Four weeks were "recovery." One was preparing for sugery. And three were recovering from surgery.

It doesn't feel fair.

I can see the beams of light shining through the dark clouds. My dad taking care of Matias last week even though mom had just had surgery. Bags of clothes and bikes dropped off for Matias. A turkey dinner that just needed to be put into the oven. Home grown squash & tomatoes. A bag of goodies for my nausea, liver & incisions. A husband who tirelessly serves his family.  These are some of the bright, shining beams that are piercing my darkness. 

I occasionally feel myself withdrawing. Noise, even laughter & giggles, can reduce me to tears. But I wear a smile cause it helps me cope.

I'm not thankful for cancer. I am, however, thankful for the many lessons learned, reminders of blessings, people I've met, stories I've heard, etc.

A while back I watched Matias sit in front of the window as little bits of dust danced in the rays of the morning sunlight. He would open and close his hands trying to grasp the beams of light. In my darker moments, this is how I feel. I can see the light; I just can't quite hold onto it. I want it in my tightly clenched hands. Instead, I just have to sit in the sunlight and receive the warmth of the rays of light.

It's been a tough weekend but I'm coming out of the darkness.

The Simple Things

Sometimes when our circumstances change, we get to appreciate (and grieve the loss of) the simple things. 

Yesterday was my first full shower in 22 days. I'd done the sponge bath thing and washed my hair in the sink... but yesterday I took a gloriously long shower and did it ever feel good! No drains, no bandages. The last time I took a shower I had breasts.  :-)

The three days since chemo have been up and down. My bloodwork came back showing an even more irritated liver (similar to February's values) and my tumour markers had risen decently in one week. That was quite discouraging.

However, my encouraging news about chemo was that it (and bloodwork) is only once every three weeks! For that I am very thankful. I was instructed that the side effects of nausea and vomiting will be stronger. I've had a decent amount of nausea and only a little vomiting. We'll see how that continues.

Trying to mentally prepare myself for losing my hair which will happen in another 11 days or so. Looking forward to not having to shave & trying to decide if I'll feel more comfortable with my baldness this time around.

So I'm learning to appreciate the simple things: grilled cheese sandwiches, snuggles & kisses from our boy, playing in the dirt, nap time, etc. This weekend for me will be about appreciating the simple things.

Playing in the Dirt

Distractions

At the Cancer Agency. Just got my bloodwork done. Xhevat has joined me for our chemo teach and then chemo at 2:00.

Decided it might be a fun distraction to make a cake for the nurses... here's to Round Two!

My impression of a boxing cake.

Round Two

I spoke with my doctor today. The results of my CT showed that my liver is in worse shape. Although the largest lesion is actually smaller than in August, the overall condition of my liver is not as good as it was.

So tomorrow will bring more chemo for me. It will be a combination of two different kinds of chemo with different side effects than last time... probably more nausea/vomiting, definitely hair loss, and then the other fun stuff like possibly heart failure, bleeding & a bigger risk for infections.

While it has been hard to readjust to the idea of chemo, it has been just as hard to "wait" for the last six days for chemo to resume. I'm ready to get on with this.

I've "debuted" my hair at church this past weekend. It will be gone in a few weeks again so I thought this would show it off. I was loved on and prayed for by many. It was one of my most difficult times at church. I could sing, 

"Be my guide, God of Abraham

Lead me by Your hand

You are strong & wise

I want to trust in You and in all I do

bring you honor and praise."

I found it very difficult to sing, "I'm alive and well. Your Spirit lives within me." I'm certainly alive and I know I have His Spirit living in me... but my heart is struggling to be well. 

I had tears streaming down my cheeks for most of the service as I tried to form the words with my voice that are imprinted in my soul.

It's a struggle... but we all have struggles and there are so many others whose struggles are much more difficult and painful. We need each other. I am so blessed to have thousands of people praying for me & cheering me on.

Thank you PCC for holding up my tear stained face and bringing me before our Father when I don't feel like I can take another step.

I'm heading into Round Two of this journey. This past weekend I was sharing with a friend that I just wanted Tuesday to come. Bring it on chemo 'cause we've got some cancer to kill! Her response to my cancer was "Let's get ready to rumble!" So on to Round Two we go!

P.S. I'm thrilled to report that I got my second drain out today. I was told that average length of days for the drain to remain in is 3-5 days. My first drain came out on day 13 and my second (and last) drain came out on day 19! Glad they've served their purpose; happy to move on. Very thankful for a nurse who fit me into her full schedule even with a sick call! And it was even better to find out we used to attend the same church! It's a small world.

Heading into Round Two of Chemo

Readjusting

I've finished my eighth appointment of the week -- four appointments with specialists, four tests/procedures. I don't really want to think about how much we've paid in parking. Friday's last appointment ended with Matias making a ruckus in the waiting room of the Cancer Agency and entertaining many who walked by. He even got to meet the therapy dog again and was all smiles!

I saw some of my chemo nurses and they asked how I was doing. With tears in my eyes, I shared my events of the week and that pending the results of my CT, my oncologist has tentatively booked me in for chemo starting on Tuesday.

These are some of the things that I'm grieving: no hair for Christmas, gonna lose my eyebrows & eyelashes again (although I am looking forward to not having to shave armpits & legs soon), weekly bloodwork & chemo appointments, who knows what will happen with my finger nails, gonna have to push our family trip to Kosova back a little, delay in the completion of my reconstruction, etc.

This is a setback. My response to my last chemo was unusually positive and my response to my oral medications after chemo were unusually negative. And so we continue not knowing what my response will be next... probably new chemo, new side effects, new everything.

This news has hit me really hard. It has been good to have family here as a help & distraction. Helping with math homework is sort of refreshing when thinking of the big picture. Only one more appointment & a phone call with another doctor before chemo. I hope to also get my last drain removed on Monday... and then I will very happily be able to take a shower! It's been too long.

Unpacking my chemo bin.

Potentially Bad News

Waiting for the good news to turn bad is difficult. Unfortunately I haven't had to wait too long to receive some potentially bad news.

I saw my general surgeon this morning. She reviewed my pathology results from my mastectomies. We knew the tumour on my left breast was large and that it had spread to my lymph nodes... no surprises there. What was surprising was that my cancer had also spread to my right breast... multiple microscopic cancerous metasteses. This wasn't what we'd expected to hear but that was just the start of the bad news.

Then off to my oncologist. He hadn't seen the pathology results but reviewed them and delivered potentially worse news. My tumour markers up significantly. Elevated tumour markers are substances in my blood which could suggest my cancer is becoming more active again. Then again, it could simply be a false high reading because of my recent surgery or many other reasons.

My oncologist is concerned.

So he's ordered a bunch of tests and appointments again... bloodwork (done), X-ray (done), Dermatology appointment (my nail is infected yet again... Friday), CT (Friday), ECHO (Saturday)... all added to this week's schedule (I thought I only had one appointment -- with my plastic surgeon -- left for the week).

Depending upon the results of these tests, it could mean:

- no change to anything

- changing my oral medications

- radiation

- surgery

- cancellation of surgery (planned for Oct. 24)

- chemotherapy

I'm overwhelmed and shaken up right now. We've known that bad news would come eventually but I certainly didn't expect it this quickly. I'm torn... wanting to be supportive of my mom as she has her surgery tomorrow but my thoughts keep on coming back to me.

I'm thankful to have had my sister with me today through these appointments. I'm thankful for the spunky boy who charms hospital staff. I'm thankful for my husband who so desperately wants to fix it all. I'm thankful for my nieces and nephews who prepared lunch for me. I'm thankful for supportive parents who hurt with me from far away.

I'm thankful for each of you who have prayed for me. And I want to ask you to keep on praying for me and us. We really need it still and it would be great to have some good news come out of this week's tests.

Through this entire situation I firmly believe that although my circumstances have changed drastically, my God has not. And so no matter how much my circumstances shake me, I am choosing to dig deeper in my trust in Him.

My Chemo Bin

(socks, wigs, hats, etc... do I pack it away or will I need to be using it again soon?)

M-Day (Mastectomy day)

Five days I woke up in the morning with my own breasts. At the end of the day I went to sleep with new ones. This is my story.

Nerves and nightmares had gotten the better of me the week prior to surgery so I'd helped myself sleep with a little medication. If it hadn't been enough to deal with the thought of loosing my breasts, leaving my baby in the care of my family topped everything off.

My loving husband fixed me a coffee that I couldn't drink. I sat and sort of pouted while he had his breakfast. I was allowed clear fluids... so I had to live vicariously through that glass of juice. The rest of my morning consisted of a long shower (it would be a while until I could scrub down again), packing my bag (if there were complications and I ended up in hospital, I wanted a few comfort items) and tying up loose ends.

At 10:30, we arrived at JPOC with my photo ID/health card in hand. I was told to bring it so that they could verify my identity. My irrational mind said,"Right... cause lots of other young ladies would want to steal my identity and have their breasts chopped off!"

I changed into the bag of hospital blues and greens that I was given making sure to do up the gowns in the appropriate directions (again... that wouldn't matter once I was on the table) and sat and waited for the nurse to call my name.

Having mastectomies and a stage IV diagnosis has given me a few perks. One of them was that I didn't have to return to the waiting room with the others in their hospital blues & greens; instead I was allowed to remain in my curtained off lounge chair area.

My IV was started by a special nurse and one by one I got to see the people who would be present in the OR. 

- The OR nurse... yup, I'm still Krista. Yes, that's my signature. Yes, that's the surgery I'm having done. 

- My plastic surgeon (never thought I'd have a plastic surgeon)... I sat still while he drew on my chest with a purple marker and took a pre-surgery photo. Tried a little humour but it didn't work out so well. P.S. It's a little awkward to have a man draw on your bare chest and take photos while your husband sits and watches.

- My general surgeon... she was the one who diagnosed me and has been an advocate in being able to have this surgery. Took another look at the purple marker lines and extended them a bit with her green marker.

- Anesthesiologist: the guy who was going to give me the good drugs so that I would be breathing but not waking up through the procedure.

And when all of this was finished, back to the OR nurse. I gave my husband a chance to say goodbye, a quick hug and kiss for me, and a long walk past the Restricted Access signs to the "Penthouse Suite" OR according to the nurse -- a beautifully, big expanse of a room with lots of windows and natural light and bustling people in their OR greens. I chose not to process big windows + breast surgery at that time.

Following instructions, I lay down on the table and made sure my two requests were voiced prior to going to sleep:

1. To my Anesthesiologist: please tape my eyes shut carefully... it's been a while since my eyelashes have been this full (even if they're short) and I'd hate to have them torn off carelessly with your pieces of tape.

2. To the OR nurse: can you please remind the General Surgeon to take a picture of my tumour? I don't want a picture of my breasts in a bowl. I just want to see the tumour that has tried to kill me.

A couple injections later and I'm asleep.

I wake up in the recovery room in pain. After a little pain medication and a quick clean up from the pink soap, I'm wheeled back to where I started my day. This time instead of a comfy chair I'm on a hard gurney.

My memory at this point isn't quite as clear as pre-op. I was very thankful to have my husband (one very relieved man) by my side. He'd been keeping people updated and waiting anxiously to see me. He could finally see I was ok... sore, but ok.

When I'm awake enough to know a little of what was going on I get a chance to look down. Under the warmed blankets is a pinkish, purplish binder -- basically a corset or really tight tube top enclosed by Velcro. Underneath my binder I have bandages which the nurses occasionally are checking on -- hi stranger! Want to take a look at my cleavage no longer? And underneath the bandages I have two drains which helps my body not have to deal with blood or fluids that would otherwise just gather at my wound site. I also have tissue expander/implants that have replaced where my breast tissue and tumour once were.

My goal at that moment was simple: to have no complicatons & get home in time for Survivor. While this may seem to be completely silly, that was my goal.

After some very uncomfortable moments, a failed attempt to get dressed and having my drains emptied a couple times, Xhevat finally gets me into the wheelchair to take me home. A quick stop at the doors to surgical daycare and some vomiting didn't stop me from achieving my goal. And after some more vomiting, I settled into my couch to watch my TV show. My body had other plans & I fell asleep.

I've had five days of recovering. My binder is still on & drains are still in. I had pain but was thankful for pain meds. And on that note, I apparently would not be a good junkie. I have learned that my body likes to be nauseated and vomit from even the weaker narcotics. After 48hrs of not tolerating much by mouth, I decide to switch to trusty over-the-counter products. My nausea goes away and I'm able to regain an appetite (fried rice was my craving Sat night). 

Another perk of being a stage IV is that a home care nurse came to check my wounds yesterday. And I had a chance to see myself without my binder on. It was a little emotional but didn't look as bad as I'd thought.

I've learned that my emotions are much like my chest right now. Wounded. Bruised. Tender. Numb. Needing an emotional binder to be supported & held together. For the first time in over a year, I have no large cancerous tumour on my breast. I am thrilled by this. But I have been hurt in the process and its going to take some time for my emotions to heal.

In my comfy chair before surgery

What do you bring to a friend who's just had mastectomies? A boob cake, of course! (I have the best friends!)