This was last week's lesson. My grandmother was admitted to the hospital for Pneumonia. Only it wasn't Pneumonia that was the main issue. It's the cancer they subsequently found. And as someone who works with cancer patients daily the diagnosis in and of itself is not necessarily the scary part. But the talk of treatable vs. curable, large masses, metastatic disease, and a jump straight to chemotherapy scare me to tears.
I'm nearly 29 so I know I'm fortunate to still have 3 of my 4 grandparents around. And I understand that people don't live forever and while no one has given us an arbitrary amount of time - no matter how long its not enough. And illness doesn't knock on your door and say "Is now good for you? I'd really like to shake your world upside down." You can't tell it "No. Sorry you'll have to come back another time because I just got my life back together and I'm on a treatment that might finally work and I haven't had kids yet and they need to meet her and I prefer it was with her hair all there."
Never did I think that someday I'd be giving advice to my Grandma about how to handle a chronic illness. And maybe that's part of why I have to go through mine - to be able to understand and support and empathize with others. As she talked about the fear and the exhaustion I understood in a way I couldn't possible know 20 months ago. I agreed it was hard to get people to understand that what you could do a few weeks ago you are no longer capable of. And I was not embarrassed for her as she wavered between tears and resolve because that happens too and its OKAY.
My cousin called me and his first words were "Rhiannon, I don't know how to feel about this. I don't know how to go about the rest of my day." And my brilliant response? "We just have to do the best we can do and be the best people we can be and continue making Grandma proud." And after some of his resolve wavered so did mine, somehow we were able to get off the phone both of us feeling better. Even more though was my Grandma's response "I'm so happy he called you it makes me proud to know you have each other." We've been doing a pretty good job of making Life count. And that gives me some strength as we gear up for this next battle.
Wednesday, August 18, 2010
Tuesday, August 10, 2010
The Brand is not Saltine
I've eaten a 1/2 box of Saltine crackers by myself this week. I don't even want to think about how much gluten that is but that seems to be the only thing helping my queasiness. When I went to the store to buy the crackers I discovered that they are actually called Premium. Saltine describes the type of cracker as it was emblazoned on the generic brand. I of course bought the generic think hey - its a cracker. I was later informed by my penny pinching husband that I should have splurged on the name brand as they are saltier.
Yes my friends I've entered into the world of chemotherapy. Dr. Sweiss prescribed Methotrexate. MTX for short. And side effects I'm experiencing so far are headache (keep the well duh's to a minimum this is a different type of headache) hot flashes and nausea. LOTS of Nausea. Oh and some vomiting.
My co-worker told me I looked like I should be on a boat today with my striped shirt and linen pants. I told her I felt like I was on a boat. Acupuncture helped some today but I tell you I had needles EVERYWHERE. My knee, my cheeks, my ears, collar bone, chest, feet, hand. We are going to switch my appointments to Fridays so that I have it the day after I take the MTX. The good news the folic acid the doc prescribed is doing wonders for my nails!
Yes my friends I've entered into the world of chemotherapy. Dr. Sweiss prescribed Methotrexate. MTX for short. And side effects I'm experiencing so far are headache (keep the well duh's to a minimum this is a different type of headache) hot flashes and nausea. LOTS of Nausea. Oh and some vomiting.
My co-worker told me I looked like I should be on a boat today with my striped shirt and linen pants. I told her I felt like I was on a boat. Acupuncture helped some today but I tell you I had needles EVERYWHERE. My knee, my cheeks, my ears, collar bone, chest, feet, hand. We are going to switch my appointments to Fridays so that I have it the day after I take the MTX. The good news the folic acid the doc prescribed is doing wonders for my nails!
Friday, August 6, 2010
I Can See Clearly Now
Sandra Bullock said when she met her baby for the first time the song What a Wonderful World popped in her head. I had never experienced this until yesterday. Sure I've had the opposite happen. Heard a song and had a memory pop in my head. In fact Cannon in D does this to me with my husband. His face as I was walking down the aisle on our wedding day flashes and I instantly feel happy and safe. For the first time yesterday I had I had "I Can See Clearly Now" pop in my head as I was thinking about my medical appointments from yesterday in the shower this morning.
I "graduated" out of therapy yesterday. For 3 visits in a row I didn't cry. I felt happy. I could talk about my circumstance without grief and with a confidence I had forgotten I possess. In short, I felt like myself again. Sure a new version of myself one who will no longer be walked all over. One who no longer bottles it all in. One who learned to set boundaries and one who has an entirely new view of the world.
I had a roommate in college who hated this song. Mainly, because the Chicago radio stations always play it while it is raining. (As if the imagery could make us forget the torrential rains we get or the snarling of traffic.) But I've always had a soft spot for it. Why not look forward to the times when there are Sun-shiny Days? And Blue Skies? In my family this is actually an adjective. Blue Skying is dreaming of the impossible or improbable. And the lyrics describe my current - dark clouds no-longer obstructing - view. My pain is gone and my bad feelings have disappeared.
I also saw my specialist yesterday and she prescribed Methotrexate which is essentially "baby chemo". And I'm already experiencing the nausea. And while this might be an obstacle in my way I think I can make it now. At least long enough to get healthy.
Rainbows have always been a sign for me of good things to come. So when I got in my car this morning and the song came on I took it as a sign especially since I was looking straight ahead, nothin but blue skies. It was the rainbow I'd been prayin for.
I can see clearly now, the rain is gone,I can see all obstacles in my wayGone are the dark clouds that had me blindIt's gonna be a bright (bright), bright (bright) Sun-Shiny day.I think I can make it now, the pain is goneAll of the bad feelings have disappearedHere is the rainbow I've been prayin forIt's gonna be a bright (bright), bright (bright)Sun-Shiny day.Look all around, there's nothin but blue skiesLook straight ahead, nothin but blue skiesI can see clearly now, the rain is gone,I can see all obstacles in my wayGone are the dark clouds that had me blindIt's gonna be a bright (bright), bright (bright) Sun-Shiny day.~ Johnny Nash
I "graduated" out of therapy yesterday. For 3 visits in a row I didn't cry. I felt happy. I could talk about my circumstance without grief and with a confidence I had forgotten I possess. In short, I felt like myself again. Sure a new version of myself one who will no longer be walked all over. One who no longer bottles it all in. One who learned to set boundaries and one who has an entirely new view of the world.
I had a roommate in college who hated this song. Mainly, because the Chicago radio stations always play it while it is raining. (As if the imagery could make us forget the torrential rains we get or the snarling of traffic.) But I've always had a soft spot for it. Why not look forward to the times when there are Sun-shiny Days? And Blue Skies? In my family this is actually an adjective. Blue Skying is dreaming of the impossible or improbable. And the lyrics describe my current - dark clouds no-longer obstructing - view. My pain is gone and my bad feelings have disappeared.
I also saw my specialist yesterday and she prescribed Methotrexate which is essentially "baby chemo". And I'm already experiencing the nausea. And while this might be an obstacle in my way I think I can make it now. At least long enough to get healthy.
Rainbows have always been a sign for me of good things to come. So when I got in my car this morning and the song came on I took it as a sign especially since I was looking straight ahead, nothin but blue skies. It was the rainbow I'd been prayin for.
Wednesday, August 4, 2010
I'll admit
I'll admit it. Yesterday I was crabby. REALLY Crabby. There was no trigger that I could tell other than pain. Cramps and backache and headache. I was PMSing big time and I don't think I've been that crabby in a long time. I was hot and tired and achey and I just wanted to go to sleep but I couldn't. The heating pad was too hot, my fan was not cold enough and the dog decided that would be a good time to find his new squeeker toy. My husband had retreated to the basement around the time I told him not to hug me and asked me what my problem was.
He had a point. I didn't really have a problem except for the feeling of ALL of my nerve endings in every part of my body firing at once. But how do you explain that to someone who has never felt that? And then I feel guilty since my pain is better shouldn't I be grateful? Its not as bad as it was. And I felt bad for being so witchy to my husband. He was a really good guy yesterday and I gave him credit in the "for future use" memory bank. Next time he's crabby I'll try to be as understanding.
When he came to bed he did rub my shoulders and told me I looked restless and even offered to turn the air conditioning up higher since he could feel how hot I was. I thanked him apologized and then finally fell asleep.
He had a point. I didn't really have a problem except for the feeling of ALL of my nerve endings in every part of my body firing at once. But how do you explain that to someone who has never felt that? And then I feel guilty since my pain is better shouldn't I be grateful? Its not as bad as it was. And I felt bad for being so witchy to my husband. He was a really good guy yesterday and I gave him credit in the "for future use" memory bank. Next time he's crabby I'll try to be as understanding.
When he came to bed he did rub my shoulders and told me I looked restless and even offered to turn the air conditioning up higher since he could feel how hot I was. I thanked him apologized and then finally fell asleep.
Wednesday, July 14, 2010
Musings
I heard the song "Isn't Ironic" today. First, let me say while I hate the song I have to admit I owned the CD back in the day. But it made me think about all the people who get bent out of shape that not every scenario being sung about is in fact Ironic.
Irony is not lost on me. I'm living and breathing irony and I think if tomorrow I sat down to write my book the first sentence would begin "The irony is not lost on me. The very thing that diagnosed me was also my cure."
When I got sick the first thing Dr. G did was schedule a lumbar puncture or spinal tap. When I saw Dr. S in Maryland he whipped out a safety pin and began poking me every which way. And when everyone put those results together I was given my diagnosis of a fairly rare and painful condition. Fast forward six months and in the office next to mine driving the car parked next to or one space over from me or my Mom was Dr. A with his needles ready to give my life back. The answer was there the whole time. I've learned through this process though that I needed to walk through it to appreciate and understand and to get to a point where I could accept that the answer was there. That common practices for me just weren't going to work. That I needed to be OPEN to new and different and that I actually prefer living this way. Life is a lot easier when you let go of some of those judgements about everything. Its also helpful to learn to tell people how you feel, set boundaries, and redefine your expectations of others as well as of yourself.
Being in acupuncture 2-3 times a week I have some quality time alone with my thoughts. I often think of writing my book and what a dedication page might look like. I imagine it would go something like this:
During this journey I have met such wonderful people and feel blessed to know that they are on my side. First to the people and teens of St. Matthew who prayed for me thank you for all the hard work! Daily I return the favor. Secondly, to the friends and family who stuck with me during my successes and my pitfalls. I know I was not always easy to love but thank you just the same. I love you back.
To Team Torres: The doctors and professionals that gave me information, hope, treatment, and health I am forever in your debt. To Dr. K for planting the idea in my head that I might have something more serious going on. Dr. G for being my all around champion, sticking to your guns and making sure the follow through happened. To Dr. BS for poking me with a pin and allowing me to cry in your office so that I could get the right diagnosis and to Dr. S for being the quarterback of it all. You were open to all ideas and provided me the right balance of comfort and doctoring. To Meg for teaching me how to dust myself off and to Jolene for teaching me how to call the plays correctly. Last but not least Dr. A who gave me my second wind thank you for putting me back in the game.
And the biggest Thank you to my husband who witnessed the entire journey and had to live it with me. Sometimes the best thing to say is the simplest. I love you. Always have. Always will.
Irony is not lost on me. I'm living and breathing irony and I think if tomorrow I sat down to write my book the first sentence would begin "The irony is not lost on me. The very thing that diagnosed me was also my cure."
When I got sick the first thing Dr. G did was schedule a lumbar puncture or spinal tap. When I saw Dr. S in Maryland he whipped out a safety pin and began poking me every which way. And when everyone put those results together I was given my diagnosis of a fairly rare and painful condition. Fast forward six months and in the office next to mine driving the car parked next to or one space over from me or my Mom was Dr. A with his needles ready to give my life back. The answer was there the whole time. I've learned through this process though that I needed to walk through it to appreciate and understand and to get to a point where I could accept that the answer was there. That common practices for me just weren't going to work. That I needed to be OPEN to new and different and that I actually prefer living this way. Life is a lot easier when you let go of some of those judgements about everything. Its also helpful to learn to tell people how you feel, set boundaries, and redefine your expectations of others as well as of yourself.
Being in acupuncture 2-3 times a week I have some quality time alone with my thoughts. I often think of writing my book and what a dedication page might look like. I imagine it would go something like this:
During this journey I have met such wonderful people and feel blessed to know that they are on my side. First to the people and teens of St. Matthew who prayed for me thank you for all the hard work! Daily I return the favor. Secondly, to the friends and family who stuck with me during my successes and my pitfalls. I know I was not always easy to love but thank you just the same. I love you back.
To Team Torres: The doctors and professionals that gave me information, hope, treatment, and health I am forever in your debt. To Dr. K for planting the idea in my head that I might have something more serious going on. Dr. G for being my all around champion, sticking to your guns and making sure the follow through happened. To Dr. BS for poking me with a pin and allowing me to cry in your office so that I could get the right diagnosis and to Dr. S for being the quarterback of it all. You were open to all ideas and provided me the right balance of comfort and doctoring. To Meg for teaching me how to dust myself off and to Jolene for teaching me how to call the plays correctly. Last but not least Dr. A who gave me my second wind thank you for putting me back in the game.
And the biggest Thank you to my husband who witnessed the entire journey and had to live it with me. Sometimes the best thing to say is the simplest. I love you. Always have. Always will.
Another Picture
My special vocabulary expands. This time into the world of diagnostic imaging which is actually somewhat helpful for my job. I obtain insurance authorizations for diagnostic imaging and sometimes that means finding certain equipment for patients. How many of you knew there are different types of MRI machines?? Beyond Open and standard?
I have to have a 3T MRI (3 Tessla the measurement of the magnet strength) and found out that a hospital much closer to our office has one such piece of equipment. I also found out that they do not have certain types of coils that might be needed for other patient's but thats totally unrelated to my journey. What's a coil? I think of it as a magnafying glass for the picture. generally its a tubular device they put around the body part being imaged. In my case I get to wear a head coil which involves first covering my ears with ear plugs, then headphones, then the coil, then adjusting it so my head can't move. Sometimes there is a mirror on the coil so that I can trick my brain into thinking I'm not being shoved into a tiny tube and am really looking "out". (This only goes so far and then comes my anti-anxiety medication. Too little I freak out, too much I fall asleep and screw up the test because I'm moving.)
I've had 6 MRI's in the last 12 months. 4 of which were for my brain. This test no longer freaks me out and there is something to be said for conditioning. However, it is now the results that make me anxious.
I saw Dr. G my neurologist on July 1st. The report seemed to describe more uptake (the disease) in new places but overall my disease seemed stable. Which is good and bad news. Good that I haven't gotten worse. Bad because I'm taking steroids and they aren't helping. And suffice it to say I gave up on the Gluten Free living. I still think it is beneficial but I'm having a hard time staying committed. And so my husband and I decided it might be time for some more drastic treatment options. (I'm going to lobby for whichever causes the most weight loss!) While my pain is under control the reality is that I'm still ill. Dr. G believes that the pain will stop being initiated when we get the diease in remission and that my dry eye will go away as well.
I'm hoping that also means the insomnia thats kicked in recently will as well. I see Dr. S in August and will repeat the MRI in September to see if the changes are noticible.
I have to have a 3T MRI (3 Tessla the measurement of the magnet strength) and found out that a hospital much closer to our office has one such piece of equipment. I also found out that they do not have certain types of coils that might be needed for other patient's but thats totally unrelated to my journey. What's a coil? I think of it as a magnafying glass for the picture. generally its a tubular device they put around the body part being imaged. In my case I get to wear a head coil which involves first covering my ears with ear plugs, then headphones, then the coil, then adjusting it so my head can't move. Sometimes there is a mirror on the coil so that I can trick my brain into thinking I'm not being shoved into a tiny tube and am really looking "out". (This only goes so far and then comes my anti-anxiety medication. Too little I freak out, too much I fall asleep and screw up the test because I'm moving.)
I've had 6 MRI's in the last 12 months. 4 of which were for my brain. This test no longer freaks me out and there is something to be said for conditioning. However, it is now the results that make me anxious.
I saw Dr. G my neurologist on July 1st. The report seemed to describe more uptake (the disease) in new places but overall my disease seemed stable. Which is good and bad news. Good that I haven't gotten worse. Bad because I'm taking steroids and they aren't helping. And suffice it to say I gave up on the Gluten Free living. I still think it is beneficial but I'm having a hard time staying committed. And so my husband and I decided it might be time for some more drastic treatment options. (I'm going to lobby for whichever causes the most weight loss!) While my pain is under control the reality is that I'm still ill. Dr. G believes that the pain will stop being initiated when we get the diease in remission and that my dry eye will go away as well.
I'm hoping that also means the insomnia thats kicked in recently will as well. I see Dr. S in August and will repeat the MRI in September to see if the changes are noticible.
Wednesday, May 26, 2010
Pins and Needles
May 2010 - At my last Neurologist appointment the doctor gave me the option of receiving a prescription for pain killers. I declined the prescription for several reasons. The first of which is that I know how much pain I'm in and I could see myself becoming very dependant on the medication. Plus they held off on prescribing this kind of medication because headache sufferes tend to get rebound headaches and it makes the problem worse. The second is that our extended family has a history of addiction and I don't want to get near that. Perhaps I watch too much Intervention. So she suggested accupuncture as a hollistic way to ease the pain. My aunt has been treated with acupuncture for migraines and swears by it so I thought it was worth a shot if insurance could cover it.
Our insurance changed January 1st and I hadn't yet read the plan summary to see what kind of new coverage we had. Luckily our benefits for accupuncture changed and when another method of pain management has failed and performed by a chiropractor or certified accupuncturist in an office setting the treatment is covered. It took a couple of weeks for me to gather up the rates and to find someone who could help me but I landed on a doctor next to the office I work in.
The first day I had laser acupuncture based on the theory that energy can get your body back in tune. It was the strangest feeling. The neck pain I had after the Pain Management doctor did occipital nerve injections went away and I was back to localized pain in the temple area on the left side of my head. The he changed the laser position and frequency and the pain began to throb then slowly the throb slowed down and it became almost like a surge. I walked out of the office virtually pain free.
Today I had my second session. He used the laser as well as traditional acupuncture needles. He also did accupressure on my neck since those muscles are completely locked. Agian I walked out in no pain. I go back Friday and three times next week. We are hoping with aggresive treatment we can get the pain to go away. I feel hopeful agian and thats always a good thing.
Our insurance changed January 1st and I hadn't yet read the plan summary to see what kind of new coverage we had. Luckily our benefits for accupuncture changed and when another method of pain management has failed and performed by a chiropractor or certified accupuncturist in an office setting the treatment is covered. It took a couple of weeks for me to gather up the rates and to find someone who could help me but I landed on a doctor next to the office I work in.
The first day I had laser acupuncture based on the theory that energy can get your body back in tune. It was the strangest feeling. The neck pain I had after the Pain Management doctor did occipital nerve injections went away and I was back to localized pain in the temple area on the left side of my head. The he changed the laser position and frequency and the pain began to throb then slowly the throb slowed down and it became almost like a surge. I walked out of the office virtually pain free.
Today I had my second session. He used the laser as well as traditional acupuncture needles. He also did accupressure on my neck since those muscles are completely locked. Agian I walked out in no pain. I go back Friday and three times next week. We are hoping with aggresive treatment we can get the pain to go away. I feel hopeful agian and thats always a good thing.
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