Changes in Plans

My last post had a few... "If this happens, then the plans are for this to happen." And when the first thing doesn't happen, then plans change.

I got up bright and early to go and get my bloodwork done at the hospital. A poke and a miss and another poke later, my blood was in the hands of the lab staff.

Then breakfast at the hospital while I waited for my appointment -- a few minutes to relax, gather my thoughts & write down my questions. My friend and my boy were going to come along for the appointment but since he's been feverish, I didn't think the Cancer Agency was the best place to bring him.

So then was the appointment. First I got to see my favorite nurse who has been a huge help to me throughout this whole process. She'd been off for a bit and it was wonderful to see her again. And then after this came the doctor.

The good news: my liver enzymes are going down (i.e. My liver doesn't appear to be as irritated as it was three weeks ago). This hopefully means that the chemo is working. For this I'm grateful (and it makes two weeks of vomiting on/off seem worth it). I was given a few different suggestions of how to better cope with my nausea & vomiting, sleeplessness, and weight loss. We'll see if those work.

The other news: My neutrophils (the cells that fight infections) are really low... too low in fact to get chemo tomorrow. This is sort of surprising as I've only had one dose of chemo but not really that surprising as I haven't been off chemo for too long and my poor bone marrow has needed a little bit of time to recover.

So chemo is delayed until next week and I don't plan to be puking this week.

Am I disappointed? Not really... nor am I happy. If my body isn't ready for chemo, I can't really do anything about that. I'm glad the chemo appears to be working and I'll get more when my body is ready. In the meantime, I'll rest up.

P.S. Enjoyed another reflexology session tonight. I'm sure gonna miss my reflexologist when she goes back to Haiti!

Chilling with my dear friend

Losing It Again, A Friend & Chemo

Well folks... it's started to happen (again). This time I'm more aware of what's going on and so I can recognize the signs earlier.

I'm losing my hair again.

At first it feels a little itchy like you've worn a hat for too long or you haven't showered in a few too many days. A few strands start to fall out. Then come the incessant pins and needles... which means I'll be shaving my head in the near future. The pins and needles feeling can be downright painful and irritating each time a strand of hair moves. Shaving simply reduces the number of opportunities hair has to move (and makes me feel that I have some sort of control in this crazy process). Then comes the pillow full of hair and, undoubtedly, more tears.

Although I've been through this process before (all too recently I might add), this is still very emotional for me. I was hoping to have my curls back for Christmas. I know that won't be the case. Having no hair makes me look and feel like I'm sick and I don't like looking "sick."

And then there's the thought of this week's chemo. I'm not looking forward to this at all. I've had a lot more nausea and vomiting with this kind of chemo. My appetite hasn't been the greatest. I've lost more weight than I'd like these last few weeks. Sleep has been hard to get and I've been feeling more anxious lately.

The three of us (and our Beast) have spent a little time outside this past week. It's been nice to have a change of scenery but some days it's tiring simply thinking of going out. I don't want to imagine what my days would be like if I didn't have my little bundle of energy keeping me going. He is generally always on the move but lately has been spending part of his day snuggled up in my arms or sitting next to me on the couch. Although he has required a bunch of my energy, I cannot imagine going through my days without him. He's also been a little feverish lately so we've been keeping a closer eye on him and have lost some sleep because of it.

Last night we had a dear friend arrive; she'll be spending the week with us. I can guarantee this week will be filled with laughter, tears, a lot of prayer, some great conversations... and foot rubs/reflexology!

Monday morning will be bloodwork and a doctor's appointment. If my bloodwork is ok, Tuesday will bring another dose of chemo. If my side effects are similar to last time, the following week (or two) will be filled with nausea and vomiting.

Ugh (to chemo's side effects) and blessed to spend a week with my dear friend.

66 Years Old

Eleven years ago a younger, cute guy tried to impress me & pick me up by telling me we had the same birthday. With a raise of my eyebrows and a wry smile, I said "prove it." And he whipped out his ID from his wallet which proved what he'd said.

Today I get to turn 66 with him! That young guy who was full of himself (aka my interpreter) has become my best friend, strong support & overall amazing husband and father. He never knew what he signed up for when we got married but here we are six years later, still madly in love, and clinging to God and each other to get through the next day. I am so thankful he chose me and I am so sorry to have put him through what we've been going through this year.

But today has been about celebrating getting older! A great morning playing with my boy. An afternoon visit with a dear friend. A number of surprise knocks on the door bringing flowers, cake & gifts. Almost had a live lobster show up at the door. Instead we went out for a really nice dinner (just the two of us thanks to two good friends babysitting) and just got to spend some quality time together.

Previously, getting older has not been something I've looked forward to. Now each birthday is a celebration (and an accomplishment of sorts). And getting old together sounds wonderful! 

Hoping to celebrate many more birthdays with you!

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?)