I can liken how I'm feeling right now to how I felt when I went into pre-term labor with my second son, Jon. At 32 weeks I started having contractions and I could tell I was going into labor. The doctors said that the baby could come at any time. We thought we had 8 weeks left to prepare. I mean, we weren't altogether unprepared, we had just been counting on those last few weeks to get all of the details in place.
So, Tuesday when my oncologist said that I would need to start chemotherapy next Tuesday, August 30th, I found myself feeling a bit under-prepared. It would seem rather odd that after waiting for this long that I would be caught off-guard by the idea of action and a possible end to all of this waiting, but here I am. I have 5 days to get things in order at home, and the list of to-do's seems endless.
The biggest challenge will be talking to our children about what lies ahead for our family. I've talked to a chaplain, a social worker, and friends for advice on how to put this into terms that my 7 and 5 year old can understand without feeling afraid. Mostly I'll rely on God for the words when we need them. If I feel confident that I can trust God as I go through this journey then I will also be confident that I can trust him with my children's emotions and well-being.
So, I will do my best to prepare and then my waiting will take on a new look. I will be waiting in places I would choose not to enter - chemotherapy suites and hospital rooms. I heard once that if I am waiting on results I will feel depleted of strength and weary, but if I wait on the Lord, He has promised to renew my strength; so I will not focus on my hcg levels reaching 0 and the 6 weeks of chemo that will continue after that. I will choose to focus on my God and what He can accomplish during this time.
Thursday, August 25, 2011
Sunday, August 21, 2011
Option #2: Think, Ruminate, Ponder
I am reminded of a catchy little ditty sung by Steve and later Joe of Blue's Clues, "...You just sit down in your thinking chair and think, think, think." Those of you with children that were one time Blue's Clues fans are no doubt humming along - for this I apologize.
When waiting, and all else fails you, think. Think about what you are waiting for. Think about what you will do when you are no longer waiting. Think about whether it's better to wait some more or just get it over with. There's a whole lotta thinkin' to do.
Today my thoughts have caught up with me. This usually happens as blood tests and appointments draw near. I go for my blood test tomorrow and then meet with my oncologist on Tuesday, where I will endure a whole other dimension of waiting - that will have to be blogged on later.
So today I am thinking, pondering, ruminating (add your own synonym here). I'm not trying to run away from my thoughts because after this many years of waiting I know that these next few days it's just a given that I will be preoccupied with thoughts of lab results and potential outcomes. I may plan a little, I'll probably be a little on-edge (although I've promised my incredibly patient husband that I will try my best not to take it out on those around me), and I'll be a little quieter than my usual chatty self. Thinking does that to you. It quiets you down.
I will not, however, allow my thoughts of what the next few days and not-to-distant future holds drag me down into a pit of despair. For I know that somewhere in the midst of this waiting, God is at work and on the other side of all of this I will have a better perspective on what His purpose has been. That's one thought I don't trouble myself with...why? I can't fathom the why, but I have complete confidence in the one who can. I trust Him with my whys. In fact, I'll add that to my things to think about today: He is faithful and just like any loving parent (He is Father after all) He wants what's best for me.
Hey, I think I just discovered a clue.
When waiting, and all else fails you, think. Think about what you are waiting for. Think about what you will do when you are no longer waiting. Think about whether it's better to wait some more or just get it over with. There's a whole lotta thinkin' to do.
Today my thoughts have caught up with me. This usually happens as blood tests and appointments draw near. I go for my blood test tomorrow and then meet with my oncologist on Tuesday, where I will endure a whole other dimension of waiting - that will have to be blogged on later.
So today I am thinking, pondering, ruminating (add your own synonym here). I'm not trying to run away from my thoughts because after this many years of waiting I know that these next few days it's just a given that I will be preoccupied with thoughts of lab results and potential outcomes. I may plan a little, I'll probably be a little on-edge (although I've promised my incredibly patient husband that I will try my best not to take it out on those around me), and I'll be a little quieter than my usual chatty self. Thinking does that to you. It quiets you down.
I will not, however, allow my thoughts of what the next few days and not-to-distant future holds drag me down into a pit of despair. For I know that somewhere in the midst of this waiting, God is at work and on the other side of all of this I will have a better perspective on what His purpose has been. That's one thought I don't trouble myself with...why? I can't fathom the why, but I have complete confidence in the one who can. I trust Him with my whys. In fact, I'll add that to my things to think about today: He is faithful and just like any loving parent (He is Father after all) He wants what's best for me.
Hey, I think I just discovered a clue.
Friday, August 19, 2011
Waiting option #1: stay busy
Alright, so I admit this isn't a long-term solution, but staying busy can really help when you are waiting. Let's face it, when we're not busy we have time to think; and although time to think is a good thing, it isn't always welcome while you wait.
So, today I am:
Just remembered the saying that "Idle hands are the devil's playground," well I've found it's more an "idle mind" that wreaks havoc with my day, but today busy hands are keeping me from a very slippery slide.
So, today I am:
- doing laundry
- prepping for a Pampered Chef show that I'm doing tonight (if I'm lucky there will be enough double chocolate mousse cups for me to have one too)
- keeping my children occupied so they will not resort to physical violence (they're 7 & 5 and summer break is going a little long)
- running to two different libraries to return items and check new ones out
- stopping at the grocery store to get the ingredients for my fruit salsa & cinnamon tortilla chips
- saying goodbye to my sis-in-law, bro-in-law & nephew before they head back to Michigan - bye Pam, Greg & Nick
- and filling the in-between time with some sort of house-cleaning related item
Just remembered the saying that "Idle hands are the devil's playground," well I've found it's more an "idle mind" that wreaks havoc with my day, but today busy hands are keeping me from a very slippery slide.
Thursday, August 18, 2011
It's been 4 years
Warning: This initial blog contains a lot of medical jargon, but it's necessary to wade through it in order to understand my story. So if you're diving into my blog for the first time, continue to take the plunge and I promise, you will come up from this "medical-ese" deep end shortly.
In 2007 my status as Lady in Waiting began. After a miscarriage in July of that year and 2 subsequent positive pregnancy tests in October and December - neither of which resulted in a viable pregnancy - I was sent to my first specialist. The gynecologic oncologist diagnosed me, at the time, with a case of Phantom HCG (human chorionic growth hormone). It was thought that something in my blood was reacting with an agent in the pregnancy test serum to produce a false positive, thus indicating I was pregnant, when I, in fact, was not. I was told that eventually this would just work its way out of my system and that I was free to have more babies (I already had 2 healthy sons).
In November of 2008, at my annual exam, I tested positive for pregnancy once again. My ob/gyn and I both questioned whether I was really pregnant or if this was just the Phantom HCG acting up. So, she tested my blood and sent me for a follow-up blood/urine test 48 hours later. It turned out that the blood and urine both tested positive - a sign that it was no longer phantom hcg, but with my hormone levels not increasing at all in the 48 hours, we suspected this was not a pregnancy either. All signs pointed to the more serious possibility of GTD (gestational trophoblastic disease). GTD, as I have come to learn, takes place when gestational trophoblast cells, leftover from a pregnancy, remain in the body after childbirth, miscarriage or abortion.
So, back I went to the oncologist. After a D&C, which resulted in the removal of a placental nodule - benign - it was determined that I had a very rare form of GTD. So, low dose, single drug chemo began. 2 rounds of intra-muscular methotrexate and when that didn't work, 1 round of actinomycin-d. After each round my HCG levels went up instead of down. So, the specialist called a few more specialists. After more tests, (have I mentioned yet that by now I was really tired of tests? If only I knew this was just the tip of the testing iceberg.) I was advised to have a hysterectomy and then multi-agent chemo.
Are you still with me? Because I'm tired of typing so you must be tired of reading. Should we take a break and come back to this tomorrow? I don't think I'll want to revisit all of this so I'm going to continue with my back-story vomit and you can decide whether or not you need a break.
Anyway, amazingly enough, my hysterectomy surgery was cancelled as I lay on the gurney ready to be wheeled into the O.R. Interest piqued? That's a whole lot of story to tell, and I still have a lot more story to go, so if you want details you'll have to wait for my book or the movie to be made based on my book, I'm hoping they'll go for a young Sandra Bullock type to play me. Oh, I know, maybe Anne Hathaway. I digress.
After my cancelled surgery the specialists conferred again and decided the best course of action was...to wait. From May 2009 to December 2010 I went for regular blood tests and waited for my HCG levels to either go down to 0 or up to 1000. The level hovered around 52 for a year, then began it's slow and steady climb. In December of 2010, after one night of some of the most excruciating pain I've ever experienced and what I initially thought might be a miscarriage, I decided I needed a doctor to take a second look at my case. I picked one of the conferring specialists, after my oncologist's rather dismissive response, and under his advisement, had a hysterectomy. I knew there was a possibility that the disease can move outside of the uterus, so I asked about the necessity of removing my uterus. I was told there was a 90% chance that the surgery would take care of the problem. 90% sounded pretty good, but I had a feeling I was a 10% kind of girl. Turns out I was right.
So, now I'm the medical freak that tests positive for pregnancy without a uterus. I'm still awaiting my call from PT Barnum (and yes I realize he's dead but I figure he's got family that would still be interested in the eternally pregnant woman). At the very lease someone should notify STAR magazine or The Enquirer.
March of 2011 marked the newest phase of waiting. I'm now a patient at Memorial Sloan Kettering Cancer Care Center. The GTD specialist told me my case is unique - I'm thinking that says a lot. I've undergone a full battery of tests and scans - MRI, CT, & PET (my least favorite was the PET; being radioactive for the day does not rank high on my list of things to do). The scans showed some "spots" of interest as well as a pituitary tumor - all of which are presently benign. At my May appointment my doc said the "magic" number for my HCG levels is 500 and then I'll need to start aggressive chemo for 3 months. Now, like many people who have heard my story you might be wondering why I would need to undergo chemo if I don't currently have cancer. Good question. I've asked it too. Turns out GTD, when left untreated, will turn malignant and when it does it gets ugly quick. So, that "magic" number is the best time to attack, before it gets out of hand.
At the first appointment in March my oncologist at Sloan told me that some patients actually feel relieved when it's time to start chemo. I thought that was a rather ridiculous statement, but now I'm beginning to understand. You just get tired of waiting. It's been four years. I've learned a lot about myself, about my body, about medicine, about my support system, and most importantly about God in this interminable waiting period. With my HCG levels last registering 398 in mid-July and my next blood test a few days away, it would seem my time in the waiting room may be coming to an end, but while I'm here I thought it might be time to make a few notes on what to do while you're waiting. Just in case you find yourself waiting anytime soon.
Congratulations if you made it through this post - you've earned your deep-end pin.
In 2007 my status as Lady in Waiting began. After a miscarriage in July of that year and 2 subsequent positive pregnancy tests in October and December - neither of which resulted in a viable pregnancy - I was sent to my first specialist. The gynecologic oncologist diagnosed me, at the time, with a case of Phantom HCG (human chorionic growth hormone). It was thought that something in my blood was reacting with an agent in the pregnancy test serum to produce a false positive, thus indicating I was pregnant, when I, in fact, was not. I was told that eventually this would just work its way out of my system and that I was free to have more babies (I already had 2 healthy sons).
In November of 2008, at my annual exam, I tested positive for pregnancy once again. My ob/gyn and I both questioned whether I was really pregnant or if this was just the Phantom HCG acting up. So, she tested my blood and sent me for a follow-up blood/urine test 48 hours later. It turned out that the blood and urine both tested positive - a sign that it was no longer phantom hcg, but with my hormone levels not increasing at all in the 48 hours, we suspected this was not a pregnancy either. All signs pointed to the more serious possibility of GTD (gestational trophoblastic disease). GTD, as I have come to learn, takes place when gestational trophoblast cells, leftover from a pregnancy, remain in the body after childbirth, miscarriage or abortion.
So, back I went to the oncologist. After a D&C, which resulted in the removal of a placental nodule - benign - it was determined that I had a very rare form of GTD. So, low dose, single drug chemo began. 2 rounds of intra-muscular methotrexate and when that didn't work, 1 round of actinomycin-d. After each round my HCG levels went up instead of down. So, the specialist called a few more specialists. After more tests, (have I mentioned yet that by now I was really tired of tests? If only I knew this was just the tip of the testing iceberg.) I was advised to have a hysterectomy and then multi-agent chemo.
Are you still with me? Because I'm tired of typing so you must be tired of reading. Should we take a break and come back to this tomorrow? I don't think I'll want to revisit all of this so I'm going to continue with my back-story vomit and you can decide whether or not you need a break.
Anyway, amazingly enough, my hysterectomy surgery was cancelled as I lay on the gurney ready to be wheeled into the O.R. Interest piqued? That's a whole lot of story to tell, and I still have a lot more story to go, so if you want details you'll have to wait for my book or the movie to be made based on my book, I'm hoping they'll go for a young Sandra Bullock type to play me. Oh, I know, maybe Anne Hathaway. I digress.
After my cancelled surgery the specialists conferred again and decided the best course of action was...to wait. From May 2009 to December 2010 I went for regular blood tests and waited for my HCG levels to either go down to 0 or up to 1000. The level hovered around 52 for a year, then began it's slow and steady climb. In December of 2010, after one night of some of the most excruciating pain I've ever experienced and what I initially thought might be a miscarriage, I decided I needed a doctor to take a second look at my case. I picked one of the conferring specialists, after my oncologist's rather dismissive response, and under his advisement, had a hysterectomy. I knew there was a possibility that the disease can move outside of the uterus, so I asked about the necessity of removing my uterus. I was told there was a 90% chance that the surgery would take care of the problem. 90% sounded pretty good, but I had a feeling I was a 10% kind of girl. Turns out I was right.
So, now I'm the medical freak that tests positive for pregnancy without a uterus. I'm still awaiting my call from PT Barnum (and yes I realize he's dead but I figure he's got family that would still be interested in the eternally pregnant woman). At the very lease someone should notify STAR magazine or The Enquirer.
March of 2011 marked the newest phase of waiting. I'm now a patient at Memorial Sloan Kettering Cancer Care Center. The GTD specialist told me my case is unique - I'm thinking that says a lot. I've undergone a full battery of tests and scans - MRI, CT, & PET (my least favorite was the PET; being radioactive for the day does not rank high on my list of things to do). The scans showed some "spots" of interest as well as a pituitary tumor - all of which are presently benign. At my May appointment my doc said the "magic" number for my HCG levels is 500 and then I'll need to start aggressive chemo for 3 months. Now, like many people who have heard my story you might be wondering why I would need to undergo chemo if I don't currently have cancer. Good question. I've asked it too. Turns out GTD, when left untreated, will turn malignant and when it does it gets ugly quick. So, that "magic" number is the best time to attack, before it gets out of hand.
At the first appointment in March my oncologist at Sloan told me that some patients actually feel relieved when it's time to start chemo. I thought that was a rather ridiculous statement, but now I'm beginning to understand. You just get tired of waiting. It's been four years. I've learned a lot about myself, about my body, about medicine, about my support system, and most importantly about God in this interminable waiting period. With my HCG levels last registering 398 in mid-July and my next blood test a few days away, it would seem my time in the waiting room may be coming to an end, but while I'm here I thought it might be time to make a few notes on what to do while you're waiting. Just in case you find yourself waiting anytime soon.
Congratulations if you made it through this post - you've earned your deep-end pin.
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