This morning was a doozy.
Today I went in to get my blood drawn via my port to ensure I can safely have Chemo No. 2 in two days. Because that's a specialized blood draw, an ER nurse has to do it. It still freaked me out quite a bit - having a port is bizarre and surreal to me anyways - so I told a variety of hospital staff, "Seriously - I'm really OK with just having it drawn from my arm!"
So it was some sweet irony indeed when, after two failed attempts to use the port, my arm had to be stuck anyways.
Earlier in the morning, I applied special prescription numbing cream to my port area. Imagine my surprise when it HURT - like a MOTHER, people. Thankfully, that lasted just a couple seconds. But then - no blood. The nurse was very kind - so sweet and apologetic as she tried for several minutes. Then I wanted to slap myself - I remembered that a second try had been necessary for my first chemo because they needed a longer, one-inch needle.
My nurse extracted the needle and went hunting for several minutes. Finally, she came in with another pack of supplies that contained a bigger sticker. I wondered how much money each of these sealed bags of supplies represented; the Neulasta shot I receive after my first four chemo appointments is more than $4,000 each. One of my ongoing prayers has been: Thank you, Lord Jesus, for supplying my husband with a job that has health insurance.
Back on the table, the nurse attempted another go with the bigger needle. Thankfully, the pain was less - maybe because I was ready for it? But still no blood. The nurse was very apologetic. Meanwhile, I was doing my best to keep my internal freakout on the down low. What if the chemo nurses on Friday can't access my port for my treatment? Did I get a port in my chest for nothing? Will I need another surgery to correct this? Will I now require being stuck in the arm an obscene number of times for future pre-chemo blood work?
And yet ... the toughest part of all of this was that 3-year-old Bella was with me. Every so often, she would say, in her brave, unwavering little voice, "I love you, momma." If I had had any clue that this was going to be anything but routine, I would have found someone to watch her. As it was, we were in there for almost two hours. She was a little rock.
I called the oncologist's office when I got home, and they were very reassuring. The gal on the phone said it was most likely a blood clot that can be easily fixed with meds that are administered pre-chemo.
"Blood clot," I said. "Like, one that could kill me?"
She said no - and managed to sound very light hearted when she said it, adding that this scenario (no blood from the port) actually happens quite a lot.
In other news, I started a 2.5-day fast today - only water - after learning that there is interesting research that indicates it helps the chemo work better (check it out here) I checked with my oncologist directly before starting this - he confirmed that he had heard about this research, and that he was "OK" with me fasting.
However, I must confess this was not the reaction I was hoping to get. I like to eat - so I was more hoping for something like, "Do NOT fast. Keep your strength up! Eat wisely! But hey - as a cancer patient, you're entitled to a chocolate-almond Haggan-Daz bar every now and then."
Wednesday, February 29, 2012
Friday, February 24, 2012
Side Effects, Ad Nauseam
So last night, I woke up with a frightfully dry mouth. Like, no spit in the pie hole, whatsoever. I swallowed with great difficulty, and boy: It hurt to re-wet that desert of a dorrito shoot. And then I also discovered, in that moment, that I had developed mouth sores - another of the usual side effects for my type of chemo. Upon waking for my day, I realized my oral, saliva-less Sahara was not going away and the sores were painfully present.
Even greater a tragedy, however: I have not been able to comfortably drink coffee in about a week. First it was because of an injury I sustained when I was intubated during the chemo port surgery - my throat was very swollen and I could not handle hot stuff. But now that I'm over that, it just tastes yucky.
Yucky?!! How can that be?? Those of you who know me well know that I L-O-V-E my coffee. I have hailed the glory of coffee in Facebook posts more than once. I was counting on The Bean to help me through especially fatigue-filled days in the coming months - I am the stay-at-home momma to a 3-year-old, and who knows what shenanigans could erupt if I am not fully present.
I am full of hope that I might be able to rekindle my romance ... but so far, the love is gone.
Other than that, it's been a pretty good week. I helped out in Kate's class yesterday, which proved to be a bit much ... I am learning that if I combine any level of feeling tired with hunger, I get pretty bent out of shape (meaning: emotional with a healthy side of queasy). Small snacks throughout the day are the key.
Small snacks - just like when I was preggers with both girls. There have been several parallels to pregnancy this last month that have surprised me - the nausea, the feeling of being bloated, the exhaustion, the inability to eat some foods. The correlation stops there - I am not delighted that this is happening, and I do not have a gorgeous little bundle of baby to anticipate. I am down one chemo appointment and have 15 more to go. And then we decide between mastectomy or six weeks of radiation.
One of my favorite verses is:
"Be still, and know that I am God." Psalm 46:10
I am a do-it-in-my-own-strength kind of person. Yet God has allowed me a stillness throughout this process that has brought a profound peace. He has continued to send encouragement in many forms. People are stepping forward and offering their help with the girls when I need to make trips to Anchorage for treatment. Cards and emails arrive every few days, reminding me that people are committed to praying for our family. I seriously need to so an entirely separate blog entry of the love-filled packages we have received in the last couple of weeks.
The tender thought and sacrifice behind all of this brings me to my knees in thanks.
Even greater a tragedy, however: I have not been able to comfortably drink coffee in about a week. First it was because of an injury I sustained when I was intubated during the chemo port surgery - my throat was very swollen and I could not handle hot stuff. But now that I'm over that, it just tastes yucky.
Yucky?!! How can that be?? Those of you who know me well know that I L-O-V-E my coffee. I have hailed the glory of coffee in Facebook posts more than once. I was counting on The Bean to help me through especially fatigue-filled days in the coming months - I am the stay-at-home momma to a 3-year-old, and who knows what shenanigans could erupt if I am not fully present.
I am full of hope that I might be able to rekindle my romance ... but so far, the love is gone.
Other than that, it's been a pretty good week. I helped out in Kate's class yesterday, which proved to be a bit much ... I am learning that if I combine any level of feeling tired with hunger, I get pretty bent out of shape (meaning: emotional with a healthy side of queasy). Small snacks throughout the day are the key.
Small snacks - just like when I was preggers with both girls. There have been several parallels to pregnancy this last month that have surprised me - the nausea, the feeling of being bloated, the exhaustion, the inability to eat some foods. The correlation stops there - I am not delighted that this is happening, and I do not have a gorgeous little bundle of baby to anticipate. I am down one chemo appointment and have 15 more to go. And then we decide between mastectomy or six weeks of radiation.
One of my favorite verses is:
"Be still, and know that I am God." Psalm 46:10
I am a do-it-in-my-own-strength kind of person. Yet God has allowed me a stillness throughout this process that has brought a profound peace. He has continued to send encouragement in many forms. People are stepping forward and offering their help with the girls when I need to make trips to Anchorage for treatment. Cards and emails arrive every few days, reminding me that people are committed to praying for our family. I seriously need to so an entirely separate blog entry of the love-filled packages we have received in the last couple of weeks.
The tender thought and sacrifice behind all of this brings me to my knees in thanks.
Tuesday, February 21, 2012
Get it OUT of me
Last night, I had a terrible time sleeping. I have had this chemo port in my chest for exactly one week tomorrow, and boy, could I feel it last night.
I read on someone else's cancer blog that they suspected they had developed a blood clot in the area of their port because they had slept on that side. So I was thinking about that last night: Try not to sleep on the port side. But however I slept, I could feel that port digging into my chest. It wasn't painful - it was just THERE and at times, it felt incredibly uncomfortable -- even itchy.
I yearned to rip that sucker right out of my chest. When I shared this sentiment with JB this morning, he looked visibly worried (and if you know my poker-face hubby, you know that means he was very concerned). No - I will not rip the port out of my chest. But wow, I am not thrilled at the idea of having this sucker in me for the next four months.
I prayed for rest, and when I finally slept, my dreams were weird. Tonight, I'm going to pray for rest on the front end and hope that God blesses me with some sweet slumber.
That all aside, today has been a really good day. I had chemo for the first time on Feb. 16, and today I feel the most like myself. The first day, following three hours of treatment and a few bags of "medicine," I felt full of fluid and swollen. They had loaded me up with anti-nausea meds, so while I didn't actually vomit, my tummy felt distended and upset.
However, it's important to note that me not vomiting yet is HUGE, because the nurses who provided my chemo told me that 90 percent of the people who receive adriamycin and cytoxan end up hurling. So I directly credit God and the power of prayer with me keeping my cookies thus far. The oncologist's staff told me that the way people respond to their first chemo treatment is a good indicator for how they will continue to respond. So hopefully this reaction will continue.
The girls are very aware of the seriousness of this illness. A few weeks ago, as we were tucking the girls into bed, 3-year-old Bella sighed, "I wish you didn't have cancer, mama!" Kate immediately agreed. And after we went for pizza the night of my first chemo, Kate waited for me while I made my way to the car. She reached out her hand and said, "I don't want you to die, mama."
All I can do is agree, and tell them that it's my plan to be around for a long time. Thankfully, God has easily supplied the words and allowed me to be very matter-of-fact with the girls.
We have even shared some smiles. Last night, when reading a book about pirates, Kate pointed to a baldie buccaneer and said: "This will be you soon!" She was just sayin' - and I had to agree! No obvious hair loss yet, but my whole scalp has started to feel tight and tingly.
Ahoy, matey!
I read on someone else's cancer blog that they suspected they had developed a blood clot in the area of their port because they had slept on that side. So I was thinking about that last night: Try not to sleep on the port side. But however I slept, I could feel that port digging into my chest. It wasn't painful - it was just THERE and at times, it felt incredibly uncomfortable -- even itchy.
I yearned to rip that sucker right out of my chest. When I shared this sentiment with JB this morning, he looked visibly worried (and if you know my poker-face hubby, you know that means he was very concerned). No - I will not rip the port out of my chest. But wow, I am not thrilled at the idea of having this sucker in me for the next four months.
I prayed for rest, and when I finally slept, my dreams were weird. Tonight, I'm going to pray for rest on the front end and hope that God blesses me with some sweet slumber.
That all aside, today has been a really good day. I had chemo for the first time on Feb. 16, and today I feel the most like myself. The first day, following three hours of treatment and a few bags of "medicine," I felt full of fluid and swollen. They had loaded me up with anti-nausea meds, so while I didn't actually vomit, my tummy felt distended and upset.
However, it's important to note that me not vomiting yet is HUGE, because the nurses who provided my chemo told me that 90 percent of the people who receive adriamycin and cytoxan end up hurling. So I directly credit God and the power of prayer with me keeping my cookies thus far. The oncologist's staff told me that the way people respond to their first chemo treatment is a good indicator for how they will continue to respond. So hopefully this reaction will continue.
The girls are very aware of the seriousness of this illness. A few weeks ago, as we were tucking the girls into bed, 3-year-old Bella sighed, "I wish you didn't have cancer, mama!" Kate immediately agreed. And after we went for pizza the night of my first chemo, Kate waited for me while I made my way to the car. She reached out her hand and said, "I don't want you to die, mama."
All I can do is agree, and tell them that it's my plan to be around for a long time. Thankfully, God has easily supplied the words and allowed me to be very matter-of-fact with the girls.
We have even shared some smiles. Last night, when reading a book about pirates, Kate pointed to a baldie buccaneer and said: "This will be you soon!" She was just sayin' - and I had to agree! No obvious hair loss yet, but my whole scalp has started to feel tight and tingly.
Ahoy, matey!
Tuesday, February 14, 2012
On the Road Again
So after a barrage of phone calls yesterday (seriously - it was insane - the cell phone would be ringing while I was on the land line and vice versa), we came up with The Plan. It involved a surgery this Friday to insert my chemo port and treatment starting next Wednesday, with a variety of other appointments sprinkled in for good measure.
Now, in the whirlwind style to which we have become accustomed this last month, the surgery is happening tomorrow and chemo starts the day after. The degree of "YAY" and "UGH" that I am feeling right now amuses me.
[YAY: We're getting started!! UGH: I hope I'm not barfing all the time for the next five months!!]
Tonight I spoke to a woman who went through treatment for triple negative cancer last year. Although she is nearly twice my age and doesn't have kids of her own, we spoke easily to one another. She gave me some wonderful tidbits of information that only someone who has "been there done that" could know. It made me so glad that I have been spending time researching this cancer, because I think the more grisly stuff could have otherwise freaked me out. But I am a strong believer in the power of information, if the facts are solid. I choose being prepared over blind-sided any day of the week.
We are heading to Anchorage bright and early so I'll keep this short. But I thank you again for your prayers that are blanketing me, our girls and this amazing husband of mine. Our family has a strong sense of peace in God's purpose for this cancer. I'm hoping His plan can be accomplished without an undue amount of vomit, but as someone who spent a lot of both pregnancies bent over a toilet, at least I come to this tourney with some experience.
Now, in the whirlwind style to which we have become accustomed this last month, the surgery is happening tomorrow and chemo starts the day after. The degree of "YAY" and "UGH" that I am feeling right now amuses me.
[YAY: We're getting started!! UGH: I hope I'm not barfing all the time for the next five months!!]
Tonight I spoke to a woman who went through treatment for triple negative cancer last year. Although she is nearly twice my age and doesn't have kids of her own, we spoke easily to one another. She gave me some wonderful tidbits of information that only someone who has "been there done that" could know. It made me so glad that I have been spending time researching this cancer, because I think the more grisly stuff could have otherwise freaked me out. But I am a strong believer in the power of information, if the facts are solid. I choose being prepared over blind-sided any day of the week.
We are heading to Anchorage bright and early so I'll keep this short. But I thank you again for your prayers that are blanketing me, our girls and this amazing husband of mine. Our family has a strong sense of peace in God's purpose for this cancer. I'm hoping His plan can be accomplished without an undue amount of vomit, but as someone who spent a lot of both pregnancies bent over a toilet, at least I come to this tourney with some experience.
Saturday, February 11, 2012
Not so "One Stop" after all
So I am back in Seward ... since I have a nasty cold, they wouldn't do the surgery to place my mediport yesterday (I should probably have written "flatly refused," because I spent some time trying to persuade the surgeon to go ahead and do it). The surgeon said that if I had the surgery, the chances of my body getting an ugly infection was far greater if I had a cold. And since I just changed oncologists, my first chemo treatment is also waylaid, along with the mandatory "cancer training" and my participation in the "chemo brain" study.
At the end of the day, the only thing I was able to get done was the heart test. One test. So much for one-stop shopping!
While the surgeon was explaining to me what's involved with a mediport, I actually started to pass out. I could not believe I was acting like this - me, the cop's wife! Me, the former reporter with the crime beat who actually yearned to see a real-deal dead body. But when I learned the particulars of how the mediport was going to be inserted and how that involved my heart ... well, let's just say the surgeon noticed my shade of green pretty quick and suggested I get horizontal in a hurry.
Part of me is glad for the reprieve with the surgery and related chemo, but the rest of me is totally bummed that the good ship M.V. Treatment is not underway. I had a moment in Michaels where I had a bit of meltdown - I was so disappointed to have traveled all that way and not have started, but I am pretty much over it now. I know that God has a purpose in all things, and this timing is no accident. And besides that, I would rather not be known as the person who kicked it as a result of being stubborn about a sinus infection.
On a bright note, the girls did a spectacular job of sleeping in a strange place and making the drive up and back. I am certain that this directly correlates to them making this trip five times in one month - that's 25 hours of time commuting to Anchorage and back these last four weeks - aye carumba indeed!
At the end of the day, the only thing I was able to get done was the heart test. One test. So much for one-stop shopping!
While the surgeon was explaining to me what's involved with a mediport, I actually started to pass out. I could not believe I was acting like this - me, the cop's wife! Me, the former reporter with the crime beat who actually yearned to see a real-deal dead body. But when I learned the particulars of how the mediport was going to be inserted and how that involved my heart ... well, let's just say the surgeon noticed my shade of green pretty quick and suggested I get horizontal in a hurry.
Part of me is glad for the reprieve with the surgery and related chemo, but the rest of me is totally bummed that the good ship M.V. Treatment is not underway. I had a moment in Michaels where I had a bit of meltdown - I was so disappointed to have traveled all that way and not have started, but I am pretty much over it now. I know that God has a purpose in all things, and this timing is no accident. And besides that, I would rather not be known as the person who kicked it as a result of being stubborn about a sinus infection.
On a bright note, the girls did a spectacular job of sleeping in a strange place and making the drive up and back. I am certain that this directly correlates to them making this trip five times in one month - that's 25 hours of time commuting to Anchorage and back these last four weeks - aye carumba indeed!
Monday, February 6, 2012
Just call me "One Stop"
Since we live in Seward, which is about 2.5 hours away from Anchorage, I have been doing my best to combine as much stuff as possible in a single trip. The people making my appointments have generally been very understanding and helpful with making this possible.
So next Thursday, I'll be getting a heart test at 9 a.m. to make sure my ticker can handle one of the chemo drugs (anthracycline, which can damage the heart muscle), then see the surgeon at 11 a.m. for a pre-op appointment. At 12:30 p.m. I'm slated to begin participation in a study about "chemo brain" that will go until about 2:30 p.m., when I need to start an hour's worth of "cancer training" that's required before I can begin chemo.
Then Friday, I'll need to be at the hospital bright and early for the surgical port placement at 9:30 a.m. Chemo starts that afternoon. Today I called an Anchorage medical firm that someone suggested might make trips to to small communities like Seward to provide chemo meds. But alas, that's not their purview, so these hauls to Anchorage have gotta happen.
It can feel overwhelming, sitting at the beginning of this process. All that driving, the side effects from chemo and what those things will mean to my girls, my husband and our family as a whole. I've been reading about things like "chemo brain," mouth lesions, fingernails/toenails that may all out, all-consuming fatigue and ever-constant vomiting or lack of appetite. And of course, hair that falls out by the handfuls.
And yet. If God hadn't allowed us to move to Seward when He did, I'd be making a 3-hour ferry trip to Ketchikan and catching a plane to Seattle. My family would maybe or maybe not be able to join me - with Kate in school and John being our breadwinner, it would be tough. Suddenly, these trips to Anchor Town don't seem all that challenging.
The side effects - those still seem pretty challenging to me right now ... and weirdly fascinating, in a horrific kind of way. I'm going to be living in a first-person science experiment that will mess with me and (hopefully) heal me at the same time.
A wonderful pastor we know once preached a sermon about having "an attitude of gratitude." I'm sure getting a whole new perspective of what that means nowadays.
So next Thursday, I'll be getting a heart test at 9 a.m. to make sure my ticker can handle one of the chemo drugs (anthracycline, which can damage the heart muscle), then see the surgeon at 11 a.m. for a pre-op appointment. At 12:30 p.m. I'm slated to begin participation in a study about "chemo brain" that will go until about 2:30 p.m., when I need to start an hour's worth of "cancer training" that's required before I can begin chemo.
Then Friday, I'll need to be at the hospital bright and early for the surgical port placement at 9:30 a.m. Chemo starts that afternoon. Today I called an Anchorage medical firm that someone suggested might make trips to to small communities like Seward to provide chemo meds. But alas, that's not their purview, so these hauls to Anchorage have gotta happen.
It can feel overwhelming, sitting at the beginning of this process. All that driving, the side effects from chemo and what those things will mean to my girls, my husband and our family as a whole. I've been reading about things like "chemo brain," mouth lesions, fingernails/toenails that may all out, all-consuming fatigue and ever-constant vomiting or lack of appetite. And of course, hair that falls out by the handfuls.
And yet. If God hadn't allowed us to move to Seward when He did, I'd be making a 3-hour ferry trip to Ketchikan and catching a plane to Seattle. My family would maybe or maybe not be able to join me - with Kate in school and John being our breadwinner, it would be tough. Suddenly, these trips to Anchor Town don't seem all that challenging.
The side effects - those still seem pretty challenging to me right now ... and weirdly fascinating, in a horrific kind of way. I'm going to be living in a first-person science experiment that will mess with me and (hopefully) heal me at the same time.
A wonderful pastor we know once preached a sermon about having "an attitude of gratitude." I'm sure getting a whole new perspective of what that means nowadays.
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