I get lots of folks asking if the radiation spheres and chemo are working. I will not really know until the end of June when another scan (MRI or PET) is done. What I can tell you is I think it is working, I think I am in the 25%, I think the large doses of three chemotherapy drugs are worth the side effects. Why? Because I feel the best I have felt in months. I am able to eat regular food; the pain in my back and hips has decreased to the point I can walk, play with the kids, and be 'part' of the household; and mentally I feel better (likely due to decreased meds). I feel like I have my life back.
Tonight I go to have my head shaved. My hair is falling out fast and furious and it is gross! I wear a bandana to keep it contained. I forgot how sensitive my scalp becomes as my hair comes out - it is bizarre how it feels.
My husband's cousin has recently joined me in Stage IV cancer-land after previously being in remission from breast cancer. She has an amazing attitude and I know she will join me in outlier-land. On her Caring Bridge blog she ends most entries with a funny anecdote and I am going to steal her idea (hope you don't mind, Cory!).
Rory is trying to learn knock knock jokes, and practices with Kyan. Yesterday morning during breakfast the bigger boys said knock knock over and over. Then, out of no where little Crosby, who only has about 4 words that he uses, says "knock knock." We all cracked up, Crosby broke into his million-dollar smile, and then proceeded to say knock knock all day. It was adorable.
Monday, May 20, 2013
Monday, May 13, 2013
Stamina
I was going to write a post about stamina tonight, but I am tired. Ironic, eh?
I came home from the hospital on Friday and am doing fairly well, all things considered.
More soon. I'll aim to start and entry earlier so I am not so sleepy.
- Posted using BlogPress from my iPad
I came home from the hospital on Friday and am doing fairly well, all things considered.
More soon. I'll aim to start and entry earlier so I am not so sleepy.
- Posted using BlogPress from my iPad
Wednesday, May 8, 2013
Hospital Stay Number Two
Ah, here I am enjoying the fine accommodations at Tower Two, Room 21 Glens Falls Hospital. I came in for a routine check Monday morning and by early afternoon was admitted due to the side effects from the chemo. Short version: I cannot eat or drink enough to stay hydrated and be able to take my medications in pill form so I am here receiving IV meds, liquids, and electrolytes as needed. The source of the problem seems to be those nasty mouth ulcers I wrote about over the weekend.
For those of you who remember my last hospital stay, you may be groaning right now since that one was so miserable. This stay could not be more different. I have experienced only fantastic nurses and techs. Many who have sat at chatted with me (even at 3 AM), and all who have gone out of their way to make my stay as positive as possible, while also trying to help me get home as soon as possible.
On Monday night I joked with Kelly that his nights would be easier because he would now just have to take care of the kids! (I asked for a lot of middle of the night crushed ice runs.)
Rory and Kyan have both been to visit me and did really well with the hospital setting. The adjustable bed was a huge hit with them and although they were curious about my accessed port (for those who haven't seen one, it looks a lot like an IV hook up, just in my chest with a clear bandage over it), riding up and down on the bed was more exciting.
I am not sure when I will get out. As Dr. S said (by the by, I have a whole new realm of nicknames I have learned for him up here...), "We did this to you, now let us help fix it."
For those of you who remember my last hospital stay, you may be groaning right now since that one was so miserable. This stay could not be more different. I have experienced only fantastic nurses and techs. Many who have sat at chatted with me (even at 3 AM), and all who have gone out of their way to make my stay as positive as possible, while also trying to help me get home as soon as possible.
On Monday night I joked with Kelly that his nights would be easier because he would now just have to take care of the kids! (I asked for a lot of middle of the night crushed ice runs.)
Rory and Kyan have both been to visit me and did really well with the hospital setting. The adjustable bed was a huge hit with them and although they were curious about my accessed port (for those who haven't seen one, it looks a lot like an IV hook up, just in my chest with a clear bandage over it), riding up and down on the bed was more exciting.
I am not sure when I will get out. As Dr. S said (by the by, I have a whole new realm of nicknames I have learned for him up here...), "We did this to you, now let us help fix it."
Sunday, May 5, 2013
New Treatment
On Monday I started a new round of chemotherapy. Dr. S opted to be aggressive (raise your hand if you are surprised!) and I am receiving three different types of chemo at once. I have one week on treatment, three weeks off, then we go again. In about two months I will get a CT scan to determine both how the chemotherapy is working on the lymph nodes and how the radiation spheres have impacted the tumors in my liver.
[Note: Read the following paragraph when not eating.]
The side effects from this combination are quite different from the other types of chemo I have been on. I am still exhausted, but I also have a combination of acid reflux (which I believe is from the steroids they give me), mouth sores, and wet heaves - which leads to a big old ball of ouch when I try to drink or eat. I am hopeful these side effects pass quickly.
I am also still battling the hip pain. It is driving me nuts. I can't move comfortably and I think you all know I like to be active. After MRIs and x-rays the docs have concluded there is nothing physically wrong and the tumors have not spread to my bones, but there is inflammation - likely from the radiation I had last summer and fall. Unfortunately because I am on a blood thinner I cannot take something like Motrin, so I am on prescription drugs to help me with the pain. And those make me groggy...it is a vicious cycle.
The last bit is that I will lose my hair again. I am okay with it, but I was really liking my short curly style. Now I just have to find my bandanas because my noggin is not fit for baldness! (Don't try to tell me it is...it is bumpy and striped. Yes, striped.)
[Note: Read the following paragraph when not eating.]
The side effects from this combination are quite different from the other types of chemo I have been on. I am still exhausted, but I also have a combination of acid reflux (which I believe is from the steroids they give me), mouth sores, and wet heaves - which leads to a big old ball of ouch when I try to drink or eat. I am hopeful these side effects pass quickly.
I am also still battling the hip pain. It is driving me nuts. I can't move comfortably and I think you all know I like to be active. After MRIs and x-rays the docs have concluded there is nothing physically wrong and the tumors have not spread to my bones, but there is inflammation - likely from the radiation I had last summer and fall. Unfortunately because I am on a blood thinner I cannot take something like Motrin, so I am on prescription drugs to help me with the pain. And those make me groggy...it is a vicious cycle.
The last bit is that I will lose my hair again. I am okay with it, but I was really liking my short curly style. Now I just have to find my bandanas because my noggin is not fit for baldness! (Don't try to tell me it is...it is bumpy and striped. Yes, striped.)
Sunday, April 28, 2013
Home Again
I am back home as of Wednesday, which I think has done me a world of good. It is great to be back with my crazy kiddos and crazier hubby. While I was away Crosby learned to run and climb, Kyan seemed to grow a few inches, and Rory's articulation seemed to greatly improve. Kelly seemed to have lost a little more hair...
On Wednesday I spoke with Lauren, the PA who works with Dr. S, about my most recent PET scan. It shows stability in both the lymph node tumors and liver tumors. This is great news considering that for the past 10 weeks the tumors in my lymph nodes have received no treatment. I expected to hear that they had spread and/or grown larger, but thankfully they opted to behave.
Tomorrow I head to the cancer center where the plan is for me to start chemotherapy. I am not sure if that will happen. I still have a great deal of nausea and am continuing to lose weight. I would like to delay a week or so to give me time to get my appetite and energy back, but the chemo may also help me feel better.
What other medical news is there? I went for an MRI of my hips Friday as they are still trying to determine why I have such pain standing and walking. I may not have told you all about that... Basically for the past 6 weeks I have not been able to stand or walk for more than 5-15 minutes without severe pelvic pain. I thought it was due to my lower activity level (which it may well be), but now I cannot increase my activity level because of the pain. I am hopeful that the MRI gives a clear cause for the pain, and a solution, such as x-ray guided cortisone shots, can be used to solve the problem.
So thankful for good insurance...
- Posted using BlogPress from my iPad
On Wednesday I spoke with Lauren, the PA who works with Dr. S, about my most recent PET scan. It shows stability in both the lymph node tumors and liver tumors. This is great news considering that for the past 10 weeks the tumors in my lymph nodes have received no treatment. I expected to hear that they had spread and/or grown larger, but thankfully they opted to behave.
Tomorrow I head to the cancer center where the plan is for me to start chemotherapy. I am not sure if that will happen. I still have a great deal of nausea and am continuing to lose weight. I would like to delay a week or so to give me time to get my appetite and energy back, but the chemo may also help me feel better.
What other medical news is there? I went for an MRI of my hips Friday as they are still trying to determine why I have such pain standing and walking. I may not have told you all about that... Basically for the past 6 weeks I have not been able to stand or walk for more than 5-15 minutes without severe pelvic pain. I thought it was due to my lower activity level (which it may well be), but now I cannot increase my activity level because of the pain. I am hopeful that the MRI gives a clear cause for the pain, and a solution, such as x-ray guided cortisone shots, can be used to solve the problem.
So thankful for good insurance...
- Posted using BlogPress from my iPad
Sunday, April 21, 2013
Accidental Withdrawal
Let me preface this story by saying that I have always had great respect for those who have beaten their addictions. I write this with a humorous edge because this event was caused by me being an idiot. Please take no offense.
I woke up Tuesday around 5AM feeling great. Well, great for me. Great like I was a little nauseated, but the pain wasn't too bad, so I decided to take two Tylenol instead of my Vicodin. Went through my day Tuesday without a problem. Nothing of note...lounging around, willing the radioactive spheres to do their work, marking up the LL Bean catalog with pants to order since all my pants fall down, very exciting stuff. Then 6:30PM hit. Suddenly all I could think about was taking a Vicodin. I mean, it was the only thing I could think about. I stared at my drug bag but mentally I knew I didn't need it for pain so I shouldn't take it. Then, and I don't know how it was possible, but I started thinking about taking a pill even more. And more. And the anxiety set in.
At this point I should note ~ I have been on Vicodin fairly steadily since December. That is why I don't drive (unless I am off it) and why I almost always have help at the house with the boys. I take very low doses and always as prescribed (it is the goody-two shoes in me). But at this point, my body is used to the Vicodin, even at the low dose.
Back to the tale...I chatted with my mom, a former nurse, and asked her if she thought it was possible I was going through withdrawal. She thought it was likely due to the amount of time I had been on the med. She told me to take a Vicodin. I said no. I didn't need it for pain and taking it (given my mental state at the time) seemed like admitting I was addicted to the pills.
Tuesday night was long. Restless legs, hot/cold spells, anxiety, stomach cramps. I texted with a friend whose husband has been through his own cancer battle ~ only to learn he was hospitalized to wean off his meds. Her advice: take the Vicodin. I still didn't take it.
At 8AM Wednesday morning I called the nurse at the cancer center. CRAP....she was not in until 8:30. Curled up into a little ball and called at 8:31 (I had to show a little restraint). Her voicemail picked up and I left a desperate, slightly crazed message for her. She called me right back and had me take a med I had on hand to calm me down a little. Then, after a few phone calls back and forth the decision was for me to take the Vicodin. I felt better within 30 minutes.
I really should have listened to my mother.
I woke up Tuesday around 5AM feeling great. Well, great for me. Great like I was a little nauseated, but the pain wasn't too bad, so I decided to take two Tylenol instead of my Vicodin. Went through my day Tuesday without a problem. Nothing of note...lounging around, willing the radioactive spheres to do their work, marking up the LL Bean catalog with pants to order since all my pants fall down, very exciting stuff. Then 6:30PM hit. Suddenly all I could think about was taking a Vicodin. I mean, it was the only thing I could think about. I stared at my drug bag but mentally I knew I didn't need it for pain so I shouldn't take it. Then, and I don't know how it was possible, but I started thinking about taking a pill even more. And more. And the anxiety set in.
At this point I should note ~ I have been on Vicodin fairly steadily since December. That is why I don't drive (unless I am off it) and why I almost always have help at the house with the boys. I take very low doses and always as prescribed (it is the goody-two shoes in me). But at this point, my body is used to the Vicodin, even at the low dose.
Back to the tale...I chatted with my mom, a former nurse, and asked her if she thought it was possible I was going through withdrawal. She thought it was likely due to the amount of time I had been on the med. She told me to take a Vicodin. I said no. I didn't need it for pain and taking it (given my mental state at the time) seemed like admitting I was addicted to the pills.
Tuesday night was long. Restless legs, hot/cold spells, anxiety, stomach cramps. I texted with a friend whose husband has been through his own cancer battle ~ only to learn he was hospitalized to wean off his meds. Her advice: take the Vicodin. I still didn't take it.
At 8AM Wednesday morning I called the nurse at the cancer center. CRAP....she was not in until 8:30. Curled up into a little ball and called at 8:31 (I had to show a little restraint). Her voicemail picked up and I left a desperate, slightly crazed message for her. She called me right back and had me take a med I had on hand to calm me down a little. Then, after a few phone calls back and forth the decision was for me to take the Vicodin. I felt better within 30 minutes.
I really should have listened to my mother.
Saturday, April 13, 2013
Treasure
Kelly makes breakfast on the weekends. For me a "weekend" breakfast used to mean instant oatmeal or if I was really living it up, an egg. Somewhere along the way, Kelly started making breakfast. Eggs and toast; eggs and cinnamon rolls; pancakes, sausage, and fruit. My children think such breakfasts are normal. It is Saturday: bring on the french toast, bacon, and freshly made orange juice. Weekend breakfast is part of our routine, so imagine last weekend when Rory bit into his apple, yelped, and started crying.
The culprit was his first loose tooth. He was not impressed. It hurt. And then it stopped hurting and he stopped wiggling it and I thought: "Yes! If he is not interested in it, then maybe it will take a few weeks to fall out. That happened to our friends' daughter. I won't miss it."
But just in case, this week my dad picked up a gold dollar coin at the bank for me. (What is this $10 a tooth junk? It is the tooth fairy...isn't she supposed to leave coins or trinkets? And $10 for a tooth? Don't even get me started more than I already have...) I told Kelly where the tooth box the dentist gave Rory was most likely to be found and handed over the coin.
I didn't think much of it after I left for my procedure Wednesday. The tooth was never mentioned when I spoke to Rory or had updates from the grown ups, and it slipped my mind. Then, this afternoon Kelly sent me a text of Rory's mouth, wide open, with a gaping hole where his wiggly tooth had been. I called him and he told me his tooth had "broken" off and we debated about what the tooth fairy might bring. He is hoping for treasure...I think he'll be happy.
I was sitting here this evening moping about what I am missing ~ weekend breakfasts and bloody teeth falling to the floor and realized I need to heed my own advice ~ if you can do nothing to change something, let it go, refocus your energy. I am off to try to focus less on what I am missing, and more on treasures I can savor while I am away.
The culprit was his first loose tooth. He was not impressed. It hurt. And then it stopped hurting and he stopped wiggling it and I thought: "Yes! If he is not interested in it, then maybe it will take a few weeks to fall out. That happened to our friends' daughter. I won't miss it."
But just in case, this week my dad picked up a gold dollar coin at the bank for me. (What is this $10 a tooth junk? It is the tooth fairy...isn't she supposed to leave coins or trinkets? And $10 for a tooth? Don't even get me started more than I already have...) I told Kelly where the tooth box the dentist gave Rory was most likely to be found and handed over the coin.
I didn't think much of it after I left for my procedure Wednesday. The tooth was never mentioned when I spoke to Rory or had updates from the grown ups, and it slipped my mind. Then, this afternoon Kelly sent me a text of Rory's mouth, wide open, with a gaping hole where his wiggly tooth had been. I called him and he told me his tooth had "broken" off and we debated about what the tooth fairy might bring. He is hoping for treasure...I think he'll be happy.
I was sitting here this evening moping about what I am missing ~ weekend breakfasts and bloody teeth falling to the floor and realized I need to heed my own advice ~ if you can do nothing to change something, let it go, refocus your energy. I am off to try to focus less on what I am missing, and more on treasures I can savor while I am away.
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