One of my favorite memories from the day Cora and Crosby were born was Kelly standing near me (I had a c-section and we were still in the operating room) holding Cora so I could see her. Then, one of the nurses, Shawn, came over with Crosby and popped him into Kelly's other arm. Kelly's eyes got a little big (or huge) and Shawn said to him, "Get used to it!" We all laughed - and Kelly's pupils returned to their normal size.
Thursday was Crosby's first birthday. He decided to take several steps in a row for the first time, though he has not done so since. He loved a giraffe toy his brothers got for him, and was quite fond of the green frosting on his cupcake (so fond he required a bath!). We had balloons, doting grandparents, and a ridiculous number of pictures were taken.
When we lost Cora, I was worried that all of Crosby's milestones would lack the amount of joy he deserved. His birthday was a bittersweet day. I was overjoyed to celebrate Crosby and all the happiness he has brought us over the past year. But, Cora was also on my mind. In the morning we attended a dedication of a memorial for Cora. In the afternoon I brought a lily to the cemetery. I could tell that several other people had been there that day, which was comforting.
Crosby is such a love and has such a dynamic personality - it is impossible not to be filled with joy when I am with him. Happy, happy first birthday, Crosby!
Saturday, September 29, 2012
Wednesday, September 26, 2012
A Confession
On 9/14, I received the great news that the tumors in my liver were stable during a 9:30AM appointment with Dr. S. I drove from that appointment down to St. Peter's to see Dr. McElrath, my oncology surgeon, with the windows down and the music up. It was a great drive down and I thought my appointment would be a quick check and he would transfer my care back up to my doctors in Glens Falls.
Instead, he came into the room with the news that he was concerned that the radiation and chemotherapy had not done their job. That the cancer in my cervix was not cured. That the treatment which works for the vast majority of patients may not have been effective for me, and that I may need a hysterectomy.
My response: I laughed. I did. Because...seriously what are the chances? Oh wait, it is me. I should have known better. I had three hours of feeling pretty good about the direction things were going with my treatments and then, crash.
Fast forward to today when I saw Dr. McElrath and Duncan again. They did a visual check and they both felt a little better about how things are looking, but have decided that in about four weeks that Dr. M will do a biopsy and those results will then determine if I need surgery. I am hopeful that the surgery is not necessary - both because I want the cervical cancer to be gone, but also because tissue that has been treated with radiation does not heal as well as normal tissue and there can be some very serious side effects to the surgery. As always, I remain hopeful.
In other news, the St. Peter's radiation oncology department now has a new rule, known internally as the Murphy Rule, about checking blood counts before internal radiation treatments. I was also told repeatedly by the staff that they were unlikely to forget me. Again, I had to laugh...as I said to them, I know I was a difficult patient, but unintentionally so.
Instead, he came into the room with the news that he was concerned that the radiation and chemotherapy had not done their job. That the cancer in my cervix was not cured. That the treatment which works for the vast majority of patients may not have been effective for me, and that I may need a hysterectomy.
My response: I laughed. I did. Because...seriously what are the chances? Oh wait, it is me. I should have known better. I had three hours of feeling pretty good about the direction things were going with my treatments and then, crash.
Fast forward to today when I saw Dr. McElrath and Duncan again. They did a visual check and they both felt a little better about how things are looking, but have decided that in about four weeks that Dr. M will do a biopsy and those results will then determine if I need surgery. I am hopeful that the surgery is not necessary - both because I want the cervical cancer to be gone, but also because tissue that has been treated with radiation does not heal as well as normal tissue and there can be some very serious side effects to the surgery. As always, I remain hopeful.
In other news, the St. Peter's radiation oncology department now has a new rule, known internally as the Murphy Rule, about checking blood counts before internal radiation treatments. I was also told repeatedly by the staff that they were unlikely to forget me. Again, I had to laugh...as I said to them, I know I was a difficult patient, but unintentionally so.
Sunday, September 23, 2012
On Being a Penguin
Today was the Adirondack Half Marathon (13.1 miles). Turns out that jogging while Rory and Kyan rode their bikes around the block was not the best training plan I could have used, but at the end of the day I crossed the finish line!
There was large Team SMAC contingent today. Here is a picture of a bunch of us:
These awesome folks are top row: Larry, me, Liz, Karen, Kate, Shawn; middle row: my Kelly, Amy; bottom row: Heather, Beth, Kelly, and Andrew. Our friend Pat is missing from the photo. Also missing were the two full marathon Team SMAC members ~ Jill and Kevin.
I made the decision to walk since I had not trained and my Kelly and Amy walked with me. Our first few miles flew by ~ chatting, checking out the beautiful scenery, saying hi to the folks cheering us along the path, being dumbfounded as the full marathon leader flew by us.
We walked through the Word of Life campus, which is a religious camp, and all the kids were out there cheering us on, hollering that we were almost there. Mind you, this was around miles 4-5, so we had quite a trip still ahead of us. But, there was fantastic energy there that helped add a little spring into our step.
Around mile 7 we ran into a woman who had a butterfly resting on her jacket. I pointed it out to her and she said it had been with her for several miles. When Cora passed away a friend told me a story of butterflies being signs from heaven. I couldn't help but think of that today. It is the 23rd and the emotion of losing Cora eleven months ago was weighing heavily on me. Kelly and I saw that butterfly and it helped lift the sadness.
By mile 8, I was starting to get tired when Kelly and I heard the voices of our friends Kevin and Jill (the full marathoners!). They slowed for a few moments to say hi and then continued their awesome run. Around mile 10 I looked up and saw three people walking towards us in Team SMAC shirts. It was my brother, brother-in-law, and sister-in-law. They finished their races, then walked back to walk the rest of the way in with us. It was a great diversion. I think Amy, Kelly, and I were all getting a little tired (we'd been walking for about 3 hours), and even though I told them they were totally obnoxious for coming back, it was nice to have their conversation for the last leg of the trip.
Now...about the penguin. Karen told me that in the Marine Corps marathon the last-place finisher gets a prize of a penguin for the accomplishment of completing. I had a pretty good idea that our trio was at the end of the half marathon group, so I insisted Amy and Kelly walk over the finish mat first, which means I came in last place. The penguin. Another year, I would probably be embarrassed by such a showing. This year, I couldn't be happier. I finished. My friends finished (with amazing times, I might add). Tons of runners asked about Team SMAC when they saw our shirts. Spectators cheered for Team SMAC. For a million reasons I wish Team SMAC never had to exist, but I am always proud to be a member.
I must now be off to attempt to climb the stairs to bed. Or curl up on the landing and sleep there. We'll see how it goes.
There was large Team SMAC contingent today. Here is a picture of a bunch of us:
I made the decision to walk since I had not trained and my Kelly and Amy walked with me. Our first few miles flew by ~ chatting, checking out the beautiful scenery, saying hi to the folks cheering us along the path, being dumbfounded as the full marathon leader flew by us.
We walked through the Word of Life campus, which is a religious camp, and all the kids were out there cheering us on, hollering that we were almost there. Mind you, this was around miles 4-5, so we had quite a trip still ahead of us. But, there was fantastic energy there that helped add a little spring into our step.
Around mile 7 we ran into a woman who had a butterfly resting on her jacket. I pointed it out to her and she said it had been with her for several miles. When Cora passed away a friend told me a story of butterflies being signs from heaven. I couldn't help but think of that today. It is the 23rd and the emotion of losing Cora eleven months ago was weighing heavily on me. Kelly and I saw that butterfly and it helped lift the sadness.
By mile 8, I was starting to get tired when Kelly and I heard the voices of our friends Kevin and Jill (the full marathoners!). They slowed for a few moments to say hi and then continued their awesome run. Around mile 10 I looked up and saw three people walking towards us in Team SMAC shirts. It was my brother, brother-in-law, and sister-in-law. They finished their races, then walked back to walk the rest of the way in with us. It was a great diversion. I think Amy, Kelly, and I were all getting a little tired (we'd been walking for about 3 hours), and even though I told them they were totally obnoxious for coming back, it was nice to have their conversation for the last leg of the trip.
Now...about the penguin. Karen told me that in the Marine Corps marathon the last-place finisher gets a prize of a penguin for the accomplishment of completing. I had a pretty good idea that our trio was at the end of the half marathon group, so I insisted Amy and Kelly walk over the finish mat first, which means I came in last place. The penguin. Another year, I would probably be embarrassed by such a showing. This year, I couldn't be happier. I finished. My friends finished (with amazing times, I might add). Tons of runners asked about Team SMAC when they saw our shirts. Spectators cheered for Team SMAC. For a million reasons I wish Team SMAC never had to exist, but I am always proud to be a member.
I must now be off to attempt to climb the stairs to bed. Or curl up on the landing and sleep there. We'll see how it goes.
Wednesday, September 19, 2012
Healing
Today marks three weeks from my last radiation treatment. The past five days or so I have felt a marked upswing in my energy level. It is not at 100% yet, but I am also not taking to my bed each afternoon for an hour or more. I also have noted that mentally I am feeling better. I knew that the challenge of the internal radiation treatments was wearing me down, I just don't think I realized quite how down I had become.
Monday I was feeling pretty zippy, so I put on my sneakers and went out for an hour. That felt okay so I decided to go to swim practice for the first time since July. The first 200 yards felt pretty sluggish, but then I started to feel better. Until there was a set of swimming 100 yards (for my non-swimming friends, that is up-back-up-back) and then getting out for push ups. And repeat. That did me in. I hopped out of the pool after half the practice, but was glad to have done a little distance.
During the day I am feeling more like I am getting back into the swing of things with the kids. Case in point: on Tuesday I was working on making lunch for all three kids. My mom was over and had gone up to get Crosby from his nap. While she getting him, I assembled the majority of all three lunches. When she came into the kitchen she went to start all three lunches, not even thinking that I would have done it since I have been zombie-woman of late. We had a pretty good laugh when we realized it was impressive I could make a grilled cheese sandwich. It is little stuff, like making lunches, that is nice to get back into again.
Last Saturday evening some of our dear friends stopped over to introduce us to their two month old son. As we sat and chatted there were several instances where I referenced "the twins" and it felt like a natural part of conversation. No tears (though now I am teary), simply sharing newborn stories with our friends. I can also make it through the little girls' clothing department without a near breakdown. I consider these small signs of healing. Though we are also in the fall, with what would have been her first birthday and what will be the first hell-aversary right around the corner. I feel although I have made these tiny steps of healing, I may take a huge step back.
Monday I was feeling pretty zippy, so I put on my sneakers and went out for an hour. That felt okay so I decided to go to swim practice for the first time since July. The first 200 yards felt pretty sluggish, but then I started to feel better. Until there was a set of swimming 100 yards (for my non-swimming friends, that is up-back-up-back) and then getting out for push ups. And repeat. That did me in. I hopped out of the pool after half the practice, but was glad to have done a little distance.
During the day I am feeling more like I am getting back into the swing of things with the kids. Case in point: on Tuesday I was working on making lunch for all three kids. My mom was over and had gone up to get Crosby from his nap. While she getting him, I assembled the majority of all three lunches. When she came into the kitchen she went to start all three lunches, not even thinking that I would have done it since I have been zombie-woman of late. We had a pretty good laugh when we realized it was impressive I could make a grilled cheese sandwich. It is little stuff, like making lunches, that is nice to get back into again.
Last Saturday evening some of our dear friends stopped over to introduce us to their two month old son. As we sat and chatted there were several instances where I referenced "the twins" and it felt like a natural part of conversation. No tears (though now I am teary), simply sharing newborn stories with our friends. I can also make it through the little girls' clothing department without a near breakdown. I consider these small signs of healing. Though we are also in the fall, with what would have been her first birthday and what will be the first hell-aversary right around the corner. I feel although I have made these tiny steps of healing, I may take a huge step back.
Friday, September 14, 2012
Stable!
I think the powers that be really wanted me to find out today that the tumors in my liver are stable since I was told via email, in person, and in a letter.
Stable! Yippee!
What does that mean?
It means it is very likely that the tumors in my liver are low-grade tumors called carcinoid tumors. In terms of treatment, I will receive a shot once a month to control the side effects (which are mild) and about every 3 months I will get a scan of some sort (MRI or PET) to see if the tumors are continuing to stay stable.
My first question was: Isn't there something more aggressive we can do now while the tumors are behaving to keep them from misbehaving later? Dr. S had a highly persuasive argument against aggressive action, and honestly, after the summer of radiation I am more than willing to enjoy a little break, let my body recover, and then go from there.
I also saw one of my surgeons today, Dr. McElrath. He removed my stitches from the internal radiation "incident." It is nice to have the discomfort from the stitches gone. I will go back and see both him and Duncan in a few weeks and at that point we'll see how things stand with the cervical cancer side of things.
Dr. McElrath also cleared me to run and swim again. The half marathon is in 9 days...this could be ugly. Do you think anyone will notice if I use those "Wheelie" shoes that were so popular a few years back?
Stable! Yippee!
What does that mean?
It means it is very likely that the tumors in my liver are low-grade tumors called carcinoid tumors. In terms of treatment, I will receive a shot once a month to control the side effects (which are mild) and about every 3 months I will get a scan of some sort (MRI or PET) to see if the tumors are continuing to stay stable.
My first question was: Isn't there something more aggressive we can do now while the tumors are behaving to keep them from misbehaving later? Dr. S had a highly persuasive argument against aggressive action, and honestly, after the summer of radiation I am more than willing to enjoy a little break, let my body recover, and then go from there.
I also saw one of my surgeons today, Dr. McElrath. He removed my stitches from the internal radiation "incident." It is nice to have the discomfort from the stitches gone. I will go back and see both him and Duncan in a few weeks and at that point we'll see how things stand with the cervical cancer side of things.
Dr. McElrath also cleared me to run and swim again. The half marathon is in 9 days...this could be ugly. Do you think anyone will notice if I use those "Wheelie" shoes that were so popular a few years back?
Wednesday, September 12, 2012
No News
I had my MRI yesterday - 1 hour to get the IV in (4 needle sticks - 2 in the wrists) and 20 minutes for the scan. I also was told I could go to the Saratoga office where they had the capability to use my port. Guess where I am going next time? On the bright side, my neighbor, Rick "King of the Hot Dog" Jarvis was my technologist. I fought the urge to sit on his front stoop last night and wait for his arrival to grill him about what he saw.
Speaking of results, I have received many texts and messages asking me what the scan showed. I won't know for a bit, but once things are sorted out I will post.
Speaking of results, I have received many texts and messages asking me what the scan showed. I won't know for a bit, but once things are sorted out I will post.
Monday, September 10, 2012
Scanxiety
Tomorrow (Tuesday) is my liver MRI. Hence, my scanxiety. The tumors in my liver have been untreated over the summer and the results of the MRI will give us a better idea of their nature. If they are stable, then it is likely they are lower-grade than the pathologist at Dana Farber thought they were. If they have grown, then the pathology was correct and the tumors are high-grade.
[Quick catch-up: Two different pathologists have looked at the liver tissue samples, but they did not agree on the grade (1 (low), 2, or 3 (high). My first four rounds of chemo were given based on the assumption of high-grade tumors in my liver. But the tumors didn't respond. This could mean the tumors are not responsive to chemotherapy or (fingers crossed here) the tumors are of a lower grade (which tend not to respond to chemo).]
I also have scanxiety because the MRI involves an IV and you all know how my veins cooperate with such procedures. I did talk to the tech about using my port, and although that is a no-go, he did give me the okay to continue with fluids after the 6 hour cut off for solid foods, and I think that will help.
Oh, and I would love to take credit for the term scanxiety, but I must give credit to my friend Janine for that one. Janine and I both lost our young daughters and now are both fighting cancer. It is odd how the most horrible things in life can bring some of the greatest people into your life.
[Quick catch-up: Two different pathologists have looked at the liver tissue samples, but they did not agree on the grade (1 (low), 2, or 3 (high). My first four rounds of chemo were given based on the assumption of high-grade tumors in my liver. But the tumors didn't respond. This could mean the tumors are not responsive to chemotherapy or (fingers crossed here) the tumors are of a lower grade (which tend not to respond to chemo).]
I also have scanxiety because the MRI involves an IV and you all know how my veins cooperate with such procedures. I did talk to the tech about using my port, and although that is a no-go, he did give me the okay to continue with fluids after the 6 hour cut off for solid foods, and I think that will help.
Oh, and I would love to take credit for the term scanxiety, but I must give credit to my friend Janine for that one. Janine and I both lost our young daughters and now are both fighting cancer. It is odd how the most horrible things in life can bring some of the greatest people into your life.
Saturday, September 8, 2012
It Goes Too Fast
Expectant parents and new parents get a lot of (unsolicited) advice, at least I know Kelly and I did. One of the most common refrains was to "Enjoy every moment, it goes by too fast." For me, that advice is compounded because my time with my children will be much shorter than it should be, than I want it to be.
Here is the kicker that all parents know...parenting is hard. It is hard to enjoy every moment as one child is trying to go head first down the stair from the family room to the porch while another is using super whiny voice to ask for more juice (without a please, I might add), and the third is singing poopie poopie pee pee at the top of his lungs. It is at such moments I look at the clock and calculate the hours until bedtime.
But then, every now and then, in the midst of the chaos, something happens. Kyan stops his frantic dancing and bends down to give Crosby a kiss and a toy while calling him "little buddy;" Rory looks at Kelly and says, without any prompting, thanks for making me dinner, daddy; Crosby lights up when I walk into the room. Those moments...those are the ones I savor. Enjoying every moment is too hard, too unrealistic, too impossible to obtain. So I keep my eyes open for those little glimmers, little moments that remind me how sweet parenting can be, even when there are still 10 hours and 43 minutes until bedtime...
Here is the kicker that all parents know...parenting is hard. It is hard to enjoy every moment as one child is trying to go head first down the stair from the family room to the porch while another is using super whiny voice to ask for more juice (without a please, I might add), and the third is singing poopie poopie pee pee at the top of his lungs. It is at such moments I look at the clock and calculate the hours until bedtime.
But then, every now and then, in the midst of the chaos, something happens. Kyan stops his frantic dancing and bends down to give Crosby a kiss and a toy while calling him "little buddy;" Rory looks at Kelly and says, without any prompting, thanks for making me dinner, daddy; Crosby lights up when I walk into the room. Those moments...those are the ones I savor. Enjoying every moment is too hard, too unrealistic, too impossible to obtain. So I keep my eyes open for those little glimmers, little moments that remind me how sweet parenting can be, even when there are still 10 hours and 43 minutes until bedtime...
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