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
Sunday, April 28, 2013
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.
Tuesday, April 9, 2013
Stalkers
So many people have asked me to post to ease their concerned minds. With some of the meds I am on, I find it difficult to write, but I will give it a shot to post at least weekly.
Tonight will just be some health highlights. But I will write about the kids soon. They are amazing.
*Today I had my second set of cortisone shots for my hips. The first showed some improvement, but more is needed to get to a comfortable spot.
*Tomorrow I have an MRI of my cervical spine. I have had some severe low back pain and this is to see if we can find some answers and rule out crappy answers, like tumor activity.
*My decreasing weight is still a problem. I am trying some new meds and alternative suggestions this week. My friend found some ginger candies that work great. Of course, can we find them again? No. If you happen to see any with real ginger in them, could you let me know?
*Wednesday is my last liver procedure. I will go down to Albany in the AM and be there most of the day. Then I will check into the hotel until Saturday and head to my folks' house Saturday afternoon through the 24th.
*On the 19th I have a PET scan to see what is going on inside. It is unlikely there will be much response yet from the sphere treatment, but it will show how the lymph nodes are doing and if there is any additional growth.
*Around April 29 I will start some form of chemo again. Three drugs are on the table. Depending on how I am doing and the PET results, I will get a mix of 2 or 3 of the drugs.p
*And now, a confession...I am back in the Diet Coke and it is oh so good. Typically just one can a day on ice. Ahhhh...
Tonight will just be some health highlights. But I will write about the kids soon. They are amazing.
*Today I had my second set of cortisone shots for my hips. The first showed some improvement, but more is needed to get to a comfortable spot.
*Tomorrow I have an MRI of my cervical spine. I have had some severe low back pain and this is to see if we can find some answers and rule out crappy answers, like tumor activity.
*My decreasing weight is still a problem. I am trying some new meds and alternative suggestions this week. My friend found some ginger candies that work great. Of course, can we find them again? No. If you happen to see any with real ginger in them, could you let me know?
*Wednesday is my last liver procedure. I will go down to Albany in the AM and be there most of the day. Then I will check into the hotel until Saturday and head to my folks' house Saturday afternoon through the 24th.
*On the 19th I have a PET scan to see what is going on inside. It is unlikely there will be much response yet from the sphere treatment, but it will show how the lymph nodes are doing and if there is any additional growth.
*Around April 29 I will start some form of chemo again. Three drugs are on the table. Depending on how I am doing and the PET results, I will get a mix of 2 or 3 of the drugs.p
*And now, a confession...I am back in the Diet Coke and it is oh so good. Typically just one can a day on ice. Ahhhh...
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