To my Mother on Mother’s Day

Dear Mom,

This is our first Mother’s Day without you. It’s crazy getting through all these firsts. It’s kind of weird and hard and awkward. I miss you today – not in a bad way, but there is still that feeling that something isn’t right. That there is something missing.

Anyway, I wanted to write to you a letter today to let you know how I feel. I wish I could have expressed all of this in a better way when you were here. I hope you knew how I feel.

This Mom stuff is crazy, isn’t it? I don’t think anyone really appreciates their mom until they are a mom too. You never know all the feelings that go into it and the big wide world that motherhood opens up. I know I didn’t fully appreciate you until I had my boy.

I didn’t know about the laying awake at night listening for your newborn to cough or call out for you. Going in to check if they are still covered, if they are comfortable, if their chest is still rising and falling. I didn’t know that the first time he slept more than 3 hours I would dash out of bed in a panic, sure something horrible was wrong. I didn’t know about how special those 3 am times alone could be, looking in each other’s eyes, nourishing my child, feeling his skin on mine. His little hand holding my fingers – nothing but us two and the silence of the sleeping world around us.

I didn’t know that as he grew I would notice every single change. That when he started staring at his fist I would know he was realizing it was his, that when he started kicking his feet in the bath I would know he was realizing that HE was making the water move. I never knew how magical these little moments were.

I didn’t know that every hurt, cry, growing experience would hurt me as much as it hurt him. That when his teeth started coming in I would wish I could just take that pain away, that when he started walking and knocked his head on too many things that I would hurt for him and wish he could just fall TOWARDS the carpet instead of the wall or chair. But also know that I couldn’t stop him from falling, because it is in the falling and the getting back up that we really learn to walk. Such is life. Falling and getting back up. Falling, getting back up.

I never knew that every time he felt badly I would too. That when some kid on the playground pushed him down I would want to push them back. I didn’t know that every time he came home saying someone at preschool or kindergarten hurt his feelings my heart would just break too. That I would actually be angry at another small child. I didn’t know that every time he made a bad decision and felt guilty and ashamed that I would want to just erase those feelings and tell him that he was perfect just the way he was. Instead I helped him think about how to choose better next time, because that’s what moms do. We forgive so easily and yet still have to find a way to help our child grow. I never knew that when he was so mad he wanted to “kick the other person in the penis” that I would think “I think you should”, but instead talk about another more appropriate way to express anger. I never knew that when he called another kid a jerk or an a**hole that I would giggle a little, secretly agree with him, and then help him find better words to use. (ps, I don’t know where he learned that word, I swear. Or where I learned to flip people off. LOL)

I never knew that watching him struggle would be so frustrating and painful for me. I never knew that having a child that doesn’t fit into society’s exact definition of “normal” would be so stressful. That you don’t want to change them, to take away what makes them so beautiful, but that you want to help them be their best selves and it’s so much harder when there are obstacles. That you just wish society and the school system and the lady at the grocery store looking down her nose at your son throwing a fit would just shut their big fat pie holes and let your kid be himself. No, he’s not perfect. That’s ok. neither are you lady at the grocery store. (PS, no one with that much makeup and fake hair should be looking down her nose at anyone. Anywhere.)

I know how you must have felt now. It amazes me that you went through it with 4 of us – all so different, all with different problems and strengths. I know that it must have really been hard to see us grow and change and slowly detach ourselves from you. I know that it feels like part of your body is moving away from you – that part of your heart slowly gets pulled out of your chest. Not necessarily painful, but somewhat sad and difficult to allow to happen. I know that it must have been really hard to see us make bad decisions and go down paths that you wouldn’t wish for us (mostly me) and that all you wanted was to show us that we didn’t have to do that – that there was better out there for us. But being a mom means letting your kids make those bad decisions. You can only give so much advice and you can’t live their lives for them.

I know now how happy you must have been when we graduated, found love, had children, called with happiness to tell you the lovely things.

I understand now that you felt like a part of you was out in the world doing it’s own thing, and that you could never really stop thinking of us and worrying for us. I understand how proud you were of our accomplishments and how in awe you were of the people we had inside us from the start.

I know now how hard the job of molding and teaching and guiding another person is. How you question every single thing you do and how you try not to do that. How you wonder what you are doing wrong some days and if you ever do anything right. I know how it feels when your kid licks the conveyor belt at the grocery store, or sticks their hands in their diapers, or topples over your favorite plant. How it feels when they scream they hate you and kick and punch at you and you just have to walk away (and you never get upset by their words because you know better). How it feels to hear your son say mean mean things to another child and wonder where that hatred or anger could possibly come from. And how to harness and guide that energy. I know how it feels to have the teacher tell you that he isn’t getting along with classmates or that he follows another kid around apologizing for something that happened 4 months ago and can’t just move on and play with someone else. I know how it feels to hold your baby down for shots of blood work or medicine. I know how it feels to have puke in your hair and your bed and your carpet and your bathroom and every spare set of sheets you can find, so you just try to wrap blankets on the bed while you try to get a load of laundry in between the puking. And yet, all you can think about is how your baby is hurting, not your needs. I know how it feels when all you want is to Pee. By. Yourself. Or sleep through a night – because you haven’t in 4 years. And you think you might be starting to go crazy because of it. (except you probably already cracked a long time ago)

AND I know how it feels when your brand newborn baby still covered in afterbirth grabs your finger with both hands and looks at you. I know how it feels to see that toothless wonderful grin. I know how it feels to watch them eat and walk and run and climb stairs and learn about sand (and scoop it out of their mouth) and make friends and play with toys and go to school. I know how moms watch with wonder as their child learns his letters and how to read and how to do math. It’s wonderful. Truly full of wonder. I know how it feels to have your 6 year old go get the present he made you at school (that you wrapped up for him) and give it to you and scream “Happy Mother’s Day Mama! You are the best Mom EVER!!!!” I know how so many amazing incredible things feel. How did I live before all of this?

Thank you mom.

Thank you for all the broken heart times, all the sick times, all the holding my hand times, all the happy times, all of the proud times, all of the sad times, all of the painful times.

Thank you for all of it.

Most of all, thank you for all you gave me. I can’t list it all. Can’t even begin. But I feel it. It’s here in my heart – all of it.

I love you. My boy loves you. My brothers and their families and so many more love you. 

Happy Mother’s Day Mom.

 

 

Mother's Day

Reblogged from fishjello:

I started to write a post about all the mothers in my life. My mother, my grandmothers, my sisters in law, my aunts, my friends, family friends, mothers I read about....

I just couldn't pull it off. I'll be honest with you. It was too long, too wordy, too full of stuff. There is just too much I could say.

Read more… 1,251 more words

I tried to write about Mother's Day. I just couldn't get past thinking about my own mom who passed away this year and past my own "being down". But last year I wrote this and I loved it. So I am sharing again.

Mother’s day wish:

Today started out bad. Last night.

I have been feeling poorly for a couple days and last night was kind of the absolute worst I have been in a while. Just cranky, depressed, not feeling well physically, exhausted, irritable, etc. 

This morning I got up and tried to make it a good day, but my son was also feeling cranky, clingy, angry, fussy…..

SO, it didn’t go all that well.

I put my “calm and patient” mom face on and tried my best to work through the problems all day.

I told him to put on a jacket, which he yelled and screamed at me about. So I told him “Ok, it’s your choice, but you are going to be cold.” We go to the store and he is so cold he won’t stop touching me, pulling up my shirt in front of everyone trying to warm his arms, putting his hands in my pockets (nearly pulling down my pants), whining and crying the whole time. And then, when I said “I told you to wear your jacket” he started screaming at me about it. Look, dude, I told you that you needed your jacket. You threw a fit, I said you would be cold. Where is the difficulty here?

Anyway, it never got better. Whining, crying, bellyaching, touching too much, screaming about everything, refusing to eat, standing outside the bathroom screaming my name until I open the door – only for him to show me a bruise he found on his knee.  Seriously. I give up. 

For mother’s day I want a hotel room with room service, preferably 2 days. No other people present. Tv, reading, laying in bed as much as I want – and nothing pulling, pushing, tugging, ripping my hair out or fussing at me. OH, and a bathroom to myself. 

Come on, universe, make this happen.

Being Myself

So, it’s kind of funny. I have always spoken my mind, I have always been open about my feelings. 

Never until social media entered my life did I find a way to be as open as I wanted as often as I wanted. And let me tell you, it doesn’t always turn out the way I would like. There have been a few friends I should not have become face book friends with, and there have been a  few family members who really got to know the real me whether I wanted them to or not.

I have even “lost a few friends” on social media. 

But here’s the thing. I don’t want to stop being me. I like expressing myself and telling people how I feel about stuff. And I like hearing what other people feel too, and once in a while deciding I need to re-examine my own views and make sure I don’t need to change my views a little. And I even like a lively debate with people who don’t feel the same way I do. Because it gives me a chance to make sure that my argument really is solid in my mind. 

Recently I really considered whether or not I need to take a step back and stop being so personal and so open with my views. 

I decided no. No I don’t. I need to continue being myself and standing up for what I believe in. And I will tell you why.

I don’t see myself as some big part of any movement. I don’t see myself as integral to the civil rights movement (gay rights, women’s rights, immigration rights, etc) I don’t see anything falling down because I am not there shoring it up. I don’t see myself as changing our rape culture single handedly.

What I do see is that no movement has made any strides because people stayed quiet. The suffragettes didn’t make headway by going home and embroidering when people told them to. The black rights movement didn’t change history by deciding NOT to go sit at the lunch counter, or by NOT marching , or by NOT having rallys or by NOT being arrested. 

The world will change with me or without me. And it might change in ways I don’t like whether I am there screaming as loud as I can or not.

But I will be damned if I will just sit by and wait and watch and be quiet about those things I truly care about. Or if I will tolerate hatred and bigotry from my friends without saying anything about it. I will be damned if I just go home and embroider when I make people uncomfortable.

This is who I am. I am proud of it. If you don’t like it, that’s ok. Nothing says you have to.

I do. And that’s all that matters. 

 

Summer Time With Special Needs

When I was told my son had some special needs, I wasn’t devastated. I had grown up around people, including my mom, who worked with kids who had special needs of one kind or another. I had also worked with kids who had special needs myself. I knew a few people with kids who had special needs. My son’s needs weren’t extreme and we can do a lot to help him. As our journey has progressed we have learned he may have a few more needs than we originally thought.

We have started doing more and more therapies and therapy related activities suggested to us by his specialists. We do therapies at home, but the therapies where we go into an office or other location for an hour or two a week are obviously the most time consuming.

I haven’t ever felt sorry for us. We have met many families in our therapy sessions who have it much harder and who’s kids have to struggle much more. I have met parents who will effectively have “children” the rest of their lives, or who have 37 year old or 42 year old children who still need to be dressed, groomed, bathed, carried, etc. I just see my son as perceiving the world a little differently and needing some extra support. I consider us pretty lucky on a “special needs severity” scale. (I made that up, by the way.)

Recently though, I felt a little bad for my son. Looking at this summer I was trying to decide whether or not to do a few day camps for him. He has really enjoyed them in the past. His first summer after preschool the specialists had suggested we do summer day camps to help him keep socialized. He did camp Monday through Friday almost the whole summer. He really did enjoy it and it gave me some time to myself in the mornings so I didn’t mind it. Last year we did a week long day camp 6 times, 2 therapies a week, and were out of town quite a bit. I felt at the end of the summer like neither of us had had much of a break.

This summer I don’t think we can do any camps. He has more therapy now, and we are hoping to do an extra one that only meets in the summer. He has 2 suggested therapeutic activities that meet 3 times a week altogether. We are going on 2 fairly lengthy vacations and we are going to sign up for first grade boot camp. That is a week long camp they do to help kindergartners get ready for first grade. At this point we already have therapy/activities 5 days a week and we are adding one. I have been worried about being able to do all of our therapy/activities next year when he is going all day to school, so I don’t want to pull him out for summer. Also, therapy is most effective at a younger age.

As my husband and I were discussing this, I realized that this is how parents who have kids with more severe special needs must feel. I know 2 families who have 2 kids in 5 therapies a week each. I don’t know how they do it. They can’t take off the summer or their children will stop walking or talking. They can’t loose that ground. They run around to therapies all afternoon and evening long. They are exhausted by simply taking care of their child’s daily needs and then they do all this in addition. Many special needs children are encouraged to attend summer school as well because they fall so much further behind than regular needs kids. One of these families takes a month every July and goes to the beach. They rent a beach house, the mom takes her 3 kids – 2 with severe disabilities – and they spend 2 weeks there. Then her husband meets them for 2 more weeks. She said all they do is sit on the beach/play in the water or play in the house the whole time. They don’t sight see, they don’t go touristing. They rest. I didn’t understand why she needed this until now. I am glad she gives them ALL a break from the hustle and bustle of therapy and school and everything else.

This is the first time (besides when the bills for therapy and activities roll in) that I really felt the impact of having a special needs child. It is discouraging in a way, though I know it helps him and I know he will be better off because of it. It makes me a little sad that we can’t just stay home for the summer and play in the sprinklers and go to the zoo. My mom had summers off because she worked in the school system. Some of my best memories are of playing outside all morning, coming in for lunch and maybe a break in the air conditioned room with the TV when it was really hot, and going straight back out for most of the rest of the day. Mom would do her mom stuff, and keep the Kool-aid handy. But she would also read a lot and get a little rest in herself.

Maybe one day we can have a summer like that. If we don’t, that’s ok, but I do feel a little guilty and saddened that our summers haven’t been like that so far.

Compassion

This morning the events of the Boston Marathon bombing are unfolding in a scary and insane way. I have friends in Boston and the whole city is on lockdown. All transportation is stopped. The video of the streets is dead silence, police cars driving down the middle of the street. No citizens outside at all. The citizens have been told to stay inside in locked homes while the police search for the second suspect and accomplices. It must be terrifying there.

And a sort of sketchy and unfinished picture of the brothers who are named as the suspects is unfolding as well. 

I have tried my best to reserve judgement until I see what is really happening and what the whole story is.

However, in the midst of all of that I have seen some information about these two brothers that is tearing at my heart. 

I don’t want anyone to get the wrong idea. I don’t want anyone to think that I don’t feel like what the bombers did was horrible. Or that I don’t feel just completely torn up for the families and survivors and injured and those who saw the wreckage and carnage. I don’t want anyone to think that I don’t think about those who ran into the blast to help people who had lost limbs or couldn’t get up or needed help. I want you all to know that I do – those are the people I feel so badly for. The heroes, the injured, the dead, the families. People trying to piece back together their lives. People afraid of ringing telephones and slamming doors now. People who can’t leave their homes because of fear. Those are the people I have been focused on all week – holding space for them in my heart. Reminding myself that love wins and to look for the good and to find the heroes. 

But this morning I saw pictures of the two brothers. Good pictures, no the grainy security camera pictures. I saw a lot of pictures of the brother who was a boxer and a few of the brother who was in school. Real pictures of them doing what they loved and laughing. Pictures with loved ones. Pictures of them goofing off with their buddies. When I saw those, and heard statements from the father and saw an interview with the uncle, it hit me. Those two boys are people too. Those two boys (however astray they had wandered from the rest of society) were people, with families and friends. 

I saw pictures that reminded me of my husband’s family. They have the same coloring and a similar kind of “look” as some of my husband’s family and friends who are Armenian. I probably wouldn’t mistake them for Armenian, but they reminded me of the people we love. The dark thick curly hair, the olive skin, the dark eyes, the bigger noses. And that hit me too. These half grins, these happy moments, these proud boys who came to America for a better life and found hardship and anger. They also touched my heart. 

And it hit me as well, somewhere there is a mother or grandmother, an aunt or cousin, a father or uncle, a grandfather. Somewhere there is another family that is torn apart by this. A family watching their son be hunted down on live TV. A family that already knows they have to bury the other son. A family across the ocean in pain. A family that doesn’t speak my language and that looks differently than I do and that may have very different beliefs. But they are a family – people who are grieving too. 

This is where the compassion comes in. 

I began to think about these boys. I didn’t really set out to do it, but I did begin to think about their lives.

I wonder what those boys have gone through? I wonder what made them so angry as to want to hurt other people. I never really do understand those sorts of things. Why one person wants to harm other people they have never even met. I suppose I never will understand it. But what kind of anger does that take? What kind of hatred? I know that growing up in Chechnya or even Kazakhstan could not have been easy. Certainly nothing like my life. My husband grew up in a war torn country as a young child, and moved to a country that is mostly ruled by tyranny. His life was not like mine. His family had real concerns. Concerns about having enough food, about daily safety, about having a roof over their children’s heads. My husband saw friends injured by unspent rounds in the street and learned to sleep through bombings. My husband’s friend told me there were times that there was no food and they snuck into the government orchards to steel fruit. I know that Chechnya has a very turbulent history (even recent). It is a painful place to live for many people. I know that Kazakhstan is a place of economic struggle and not enough to go around. I know that these boy’s lives must not have been easy and that is why they came here. 

It is being said that they never adapted well to the new environment here. I have seen the immigrants I know treated poorly and I can only imagine that these boys also had a hard time with that. They were probably treated like second class citizens and possibly even bullied in their younger years. 

I always tend to think about the why of these types of crimes. Why would a young person want to shoot up a theater or school? Why would a young man want to bomb a federal building? Why would two smiling brothers want to harm innocent people they have never met? The only answers I find are always that they must have pain I can’t understand. And that they haven’t been given the ability to deal properly with that pain. 

I know what they did was wrong. And I know that the harm they inflicted and the fear that people have had to endure because of them is horrible. I am not discounting that. 

But somehow, I find compassion for them too. I find myself wanting to hug those younger, smiling boys in the pictures with family and friends. I find myself wanting to change their course back when the pain was mounting and they found no help or relief. I want to stop whatever voices (internal and external) put these ideas in their thoughts. I want to tell them that we are all a part of the same family – we are all people.

I want to remind myself that they are people. With loved ones. At one point they were just like you and me. 

I will reserve my final judgement of their actions until I find out more of the story. But today, my heart is heavy. My soul hurts for all of those involved. I am hurting with all of those that are hurting. 

 

“Pain shared, my brother, is pain not doubled but halved. No man is an island”

-Neil Gaiman

 

The Good Cancer

I have had 3 conversations in the last 3 weeks with people about thyroid cancer and it being the “good one”. One of my support groups also lost a lovely, young, vibrant lady to thyroid cancer this week. So, I decided I need to write another post about it.

(Please don’t feel offended, people I had these conversations with. I feel like if I don’t use the experiences I have had to help others, then it is all in vain. I participate in several support groups because I have a lot of advice to give. I try to educate about different parts of thyroid cancer. I just want to get the word out and I’m not upset or anything.)

When most people get diagnosed with thyroid cancer the doctor says “BUT, if you have to get cancer, this is the one to get.”

Totally true. That’s exactly what my doctor said and what numerous doctors and nurses and lab techs and radiology techs have said since.

Now, I know that doesn’t sound so bad. I know that it is meant to be encouraging. In fact, I felt encouraged by it at first. But I feel it does more damage than good. The following are the reasons I feel that way.

When my doctor (whom I love) diagnosed me he said “well, you have thyroid cancer. that’s the bad news. BUT if you have to get cancer, this is the one to get. We just take it out, you do a pill form of radiation, and you take a pill for the rest of your life and you are back to normal.”

First of all, even if I had had a straight forward, simple case, this isn’t actually what happens to most of us. I know over 500 thyroid cancer survivors and none of them had that experience. ALL of them have several long term lasting effects. I compare that to the 50 breast cancer survivors I was in an IRL women’s cancer support group with, only about 50% of them had any kind of long term effects. They were all surprised by my stories of what I felt like after and how my body reacted to not having a thyroid and such. Yes, some had neuropathy from chemo, some had lymphadema, some had burns from beam radiation. All had permanent changes in their actual breasts of course. But most were able to go back to their normal life after their surgery and treatment were over. (I am not saying breast cancer is easier or better. Just comparing my experience with the long term effects.)

Here is a small list of the side effects my thyroid cancer friends experience (I will be posting again with a more in depth look at this later): Fatigue, heat sensitivity, cold sensitivity, night sweats, hormone imbalance, early menopause, hair loss, skin changes (greasy, dry, infections, breakouts), lymphadema, sleeplessness, memory loss, short term memory problems, confusion or foggy brain, joint pain, muscle pain. Hypocalcemia, hypo vitamin D (both very serious problems). Problems with digestion. The RAI (radioactive iodine) almost all of us take causes it’s own long term problems: salivary gland damage which leads to dry mouth, tooth decay, bone loss, kidney or intestinal tract scarring and complications. One woman I know had her pancreas scarred by it and has had the absolute worst digestive problems that have required surgery and more. Dry eyes, tear duct damage, infertility. Once you take a treatment dose of RAI you can’t get pregnant or nurse for a year or it can harm the baby. Just the treatment itself is torture because you have to go off your medicine to become extremely hypothyroid (I was to the point that I couldn’t walk on my own or hold my newborn) and you have to go on a low iodine diet for 2 weeks. That is difficult when you are so sick from being off your medicine because you have to cook everything yourself. But the worst part to me is being isolated after it. We are told to stay away from adults for a full 5 days and small children or pregnant women for 7. In some other countries the times are much longer. Up to a month. When my friends who had chemo or radiation went to treatments they had someone take them and hold their hand and help them home. I had to go alone (no one can be in the car with you after) and swallow a radioactive pill and then go straight home and lock myself up away from everyone else for a week. My baby (5 mos) had to go stay with my parents for a week. It was torture for me to not have that human contact with anyone. And I got incredibly ill from the dose – I threw up for days. Imagine – you just had cancer surgery, you have been sick and emotional for weeks, and now you swallow a scary radiation pill that they bring out in a lead lined box and then they rush you out the back door and tell you to go straight home. You are sick and alone and extremely emotional (that’s what being off your meds does). And you are all alone. The radioactive iodine also gives you a higher chance of getting breast, uterine, ovarian, testicular, colon and other types of cancer. The most common side effect from the surgeries alone is vocal chord paralysis (which isn’t pretty, trust me) and parathyroid damage, nerve damage, and muscle damage.

So, let’s get beyond the side effects (this is by no means an all inclusive list) and lets look at thyroid cancer itself. Thyroid cancer DOES have one of the highest survival rates. Because we have the radioactive iodine we have good success with being cancer free one day. Thyroid cancer also has one of the highest recurrence rates. If my doctor ever classifies me as cancer free, I will still have to continue following it for the rest of my life because it is likely to come back at some point. Let’s put this in perspective: one friend of mine said “well, it’s not like pancreatic cancer that is most often a death sentence.” No. It’s not. Some people die from thyroid cancer, but it’s most often from a more aggressive form of it. The most common form is papillary and we have a good treatment rate with that. If you get thyroid cancer your chances of having it treated and taken care of are pretty high. If it has metastasized outside the neck the chances of being cancer free drop considerably – just like any other cancer. If it is a more aggressive variant (like mine) it changes your prognosis. Some thyroid cancers don’t respond well to RAI and they have to be treated with other meds or just surgically removed, or sometimes beam radiation can be used. Some thyroid cancers (like mine) mutate and stop responding to RAI. These thyroid cancers become much harder to treat as well.

One of the ways we treat our cancer is to take a “suppression dose” of thyroid meds for at least several years after surgery. I have had a lot of people assume this means I will have lots of energy and loose weight. That’s not how it works unfortunately. Being on a dose that constantly keeps your TSH in the hyper range can cause you a great deal of daily discomfort. It’s like running a car engine too hot and too fast for hours. What happens to it? It burns out or has to be shut off for a while. The same happens with us – we crash daily. We learn to dole out our energy carefully. Not spending too much energy on one thing when we know we will need it later. For me this has become a delicate balancing act. I take breaks during the day to just lie down for a good 15-20 min. If I don’t I will be exhausted by dinner time. If I know I am planning an outing with my son for example, I don’t get up and take a long hot shower and cook a big breakfast and do laundry and pick up the house before we leave. I do the least I have to and go early with my son so that by the time I have used up all my energy we can be headed home. Then I have to rest at home before attending to the normal daily things. Thyroid medications are not the same as your natural thyroid hormone. They don’t act in your body exactly the same way your natural hormone does and they have their own side effects or effects on the body – especially at the high doses we take. Mood swings, irritability, depression, anxiety, sleeplessness, digestion problems, skin problems, hair loss, memory problems, heat intolerance and more. Heart problems are one of the scariest side effects. Being on this high dose gives many of us palpitations or tachycardia. I have the latter and take a daily medicine for that. I take a daily medicine to help combat the effects of the other daily medicine I take…. JUST taking the medicine we have to take every day – especially when we have to take the higher doses – changes our life dramatically. Without the medicine we would get very sick, lapse into a coma one day, and eventually die. We literally can’t live without it.

To me, the worst part of health professionals telling me that my thyroid cancer is the good one to get is the attitude that pervades the medical community about it. First of all, I had ANYTHING but a normal case. I had great treatment once we found it and I have had the best doctors. Without them I would be dead. My first surgeon spent 5 extra hours because one tumor was wrapped around the nerves that control my mouth. He really wanted to get it out without damaging them. He was actually worried I wouldn’t be able to talk when I woke up. But I could. He did a great job. My body hasn’t reacted to the surgeries the way most people’s do and I have several permanent disabilities from them. I had 4 surgeries in 3 years and several treatments. Not to mention all the blood tests, ultrasounds, PET/CT scans and more. I am thankful that I am here to spend my life with my son and other family, but my life has changed in hundreds of small ways, and I don’t think it will ever go back. To tell people newly diagnosed with cancer – any cancer – that their road will be simple or easy does them a disservice. Do I think they should scare us, do I think they should tell us horror stories? No. But I do think they should prepare us. Prepare us that this IS cancer. This MAY change your life.

As far as the medical community’s view on thyroid cancer goes, that in itself upsets me. No one knows what to do with a thyroid cancer patient who is off their meds and comes to the ER with a very high fever. (this happened to me) Very few doctors know what is best to do in a thyroid storm or a calcium crash. In many parts of the US we don’t see an oncologist. I tried to go to the major cancer center here and they told me to go back to my endocrinologist. My endocrinologist follows my cancer and she is a good doctor. But I don’t understand why a cancer center excludes a cancer patient of any kind. I missed out on all the things a cancer center offers – financial help, social workers, psych help, family counseling, etc. because I had “the easy cancer”. When I talk to my other doctors about my health issues I have to explain TO THEM why we keep my synthroid high, why I HAVE to take vit d and calcium. I have to tell THEM why I can’t take extra dietary fiber because it affects my synthroid absorption  I have to tell THEM why birth control pills will affect my dose of medicine. It is a sad state of affairs when the medical community sees your disease as easy and nothing to worry about to the point that they have litte education about it at all unless it’s their specialty. It makes it difficult for us to get the care we need.

I want to talk about one more thing. Most of us have a PTSD reaction to doctors and testing and hospitals now. Most of the gals I know that went through the surgeries and the treatments and the trying to figure out what was wrong in the first place and the biopsies and the scans all have a very difficult time with doctors now. If the medical community (and lets face it – the world) tells us that our cancer is the easy cancer and doesn’t listen to our concerns, what are we supposed to feel? Surgery and treatments and tests alone make many people scared or anxious or affected in some ways long term. Couple that with the frustration of no one knowing what to do with us, and everyone telling us we got lucky when we got OUR cancer and it’s a recipe for disaster. Many of us had a hard time figuring out what was wrong and many of us have a hard time getting the kind of treatment we need long term. There are so many different “standard procedures” thyroid doctors follow in these cases that we don’t even know if we are getting the “normal” treatment or not. Even the isolation instructions vary from hospital to hospital after RAI. We don’t know how to judge whether our treatment is going well or not. How are we supposed to feel about doctors? Because at this point most thyca survivors I know have a hard time trusting medical professionals in general and have PTSD type reactions to even getting a regular physical.

This was a long post, and it doesn’t even cover all of what I find offensive about labeling thyroid cancer as a good cancer. It’s CANCER for the love of man, can’t we all at least agree that cancer isn’t good – no cancer is good? Please.

So, if you are a medical professional or know one, here is my advice. Simply change the dialogue. Say something along the lines of “Well, thyroid cancer IS normally one of the most treatable cancers out there, so I am happy for that for you. Still, I know, no cancer is easy or good and I’m sorry you have to go through this.” I believe it would go a long way toward helping out thyroid cancer patients.

Stuff my kid says

I decided I have two stories I just can’t keep to myself. My son makes me so amazed by some of the things he says, and the way he thinks through things. I swear, one day he will figure out some cool stuff – those gears are always turning.

Here are two awesome examples of my kid being himself:

This weekend we were going to the zoo with my cousin and her husband. Her husband, Greg was sitting in the back with The Boy and The Boy was chatting him up pretty seriously. We pulled up at a light next to an ambulance  On the side of the ambulance it said “Call 911 for assistance”. My son notices and starts talking about it. Greg tells him that 911 is who you call if someone needs help or there is a fire or accident (which we have talked about before I promise). My little dude sits back there and says “But what if you need all of them? What if you need a police and a fire truck and a ambulance?” We explained that when you call 911 you talk to a dispatcher who then helps decide what emergency help you need and sends all 3 to you if needed. He was so interested in how that all works, how the person on the phone gets a hold of all of them. I love that he was figuring it out in his head – like “do I have to call 3 times, do I call other numbers?”

The second was after we got parked near the zoo. It was busy and we had to walk over from City Park. We passed a bunch of trees on an island in a pond with big black birds in probably a good 4 dozen nests. The birds were as big as geese but skinnier. (my cousin told me what they are but I can’t remember the name) There were also a bunch of geese in the water and walking around the pond. My son says “well, those birds are doing their jobs. They are doing their jobs good.” I asked what their jobs were and he told me their jobs were sitting on the eggs in the nests. I couldn’t argue. They were doing their jobs.

We then went into the zoo and spent several hours there. On the way back he says to me “They are still doing their jobs. Working hard.” I was not on the same thought track as him and had forgotten all about the birds doing their jobs. I asked who is working hard? He exasperatedly tells me “the birds mom – those big black birds.” I am surprised at how long he had remembered that, but the back story he has thought up for the black birds doing their job is even more surprising. He says “I hope the geese don’t fire them.” I ask why the geese would fire them. He tells me the geese are their bosses and they have to do a good job or they will get fired. He tells me they are sitting on eggs for the geese because geese don’t like to lay their own eggs. When I tried to ask about the chicks being geese or the black birds when they came out he seemed totally frustrated that I didn’t know that they could have both kinds of birds in their eggs. He really went on for a while about how they need to do a good job with the eggs and the geese are always watching them, being the boss. It was a delightful tale and I had to write it all down.

The adults involved decided that geese do actually seem pretty bossy – what with their strutting around all day, bills up in the air, hissing at people going by and pooping right on the sidewalk.

My son’s mind amazes me and I am so happy he shares it with me.

Ghost Tour

So, my cousin, Leigh, and her husband, Greg, came to my house for spring break. They were going to a concert and they also spent a few days just hanging out. I am glad they did. I hadn’t seem Leigh much in the last few years and had never had a chance to get to know Greg really well, so it was fun to spend some time with them.

They had asked me to help them think of some fun things to do in Denver, and I hope we did some things that interested them. The first thing that came to mind was the “Ghost Tour.”

I heard about ghost tours in the old downtown area called Capitol Hill for a while and had thought they would be fun, but had never gone. I knew Leigh and Greg had done some fun things with paranormal groups and classes in the past and were interested in those sorts of things, so I immediately sent them a link to one.

I am not going to share the actual name of the tour we took, but if anyone wants to know I will be happy to share that privately with them.

The tour takes place in the area of Denver which is where there are many old mansions dating back to the 1880′s or so. Molly Brown’s house (the unsinkable Molly Brown) was the first stop on our tour. It is on the first street going north and south that had electricity and is full of old beautiful properties. The area has always been one of my favorites. I was lucky enough to move here after the area was being torn down, inhabited by crack heads, and basically abandoned by all but the worst parts of humanity. The old buildings have always interested me and I love architecture and local history.

We met our tour guide in a parking lot, paid him in cash, and he started taking us around the area. He was a funny, nice man, and kept a better pace than I would have guessed he could.

His knowledge of the history of the buildings he showed us was detailed and interesting. He had a good story telling ability. He knew a lot about the area in general and the history of who lived there, why they might have sold, who died there and how the houses came to be what they are today. Many of the buildings had been either turned into apartment houses or bed and breakfasts. One was an office building. Several times people stopped and talked to him. They had seen him out on his tours and knew him and what he does. A couple people asked how to get ahold of him and where they could find his tours.

The night was beautiful. It wasn’t cold enough to need more than a jacket, even when standing and listening to some of the stories for a while. I was happy the lady who took our reservation told us to wear comfortable shoes. Even in my tennis shoes my feet started hurting after a while. Walking around after dark in the beautiful and trendy area, seeing people out enjoying the weather, looking at the old houses was all so enjoyable.

Apparently the tour used to go inside many of the houses, but no longer does according to their website. The owners weren’t willing to claim liability for what might happen in their properties – that is the explanation.

We heard many very interesting stories, but I can only say that one house really really felt creepy to me. A couple were interesting and had a certain spookiness to them. Especially when coupled with the stories told.

I thought this house was especially beautiful. It has real Tiffany windows and is just lovely.

The Croke-Patterson house was by far the creepiest to me. It has a very rich history and not just in creepy story terms. One story was about a woman who lost her child shortly after birth and couldn’t bear to part with her, so moved her body back to the house after burial. Another story was about the care taker. The house isn’t far from Cheeseman Park and when the city decided to move the bodies from what was then the City Cemetary to make it into a park, they hired this man to oversee it. He apparently stored some of the bodies in the carriage house where he lived along with animal bodies – all of which had been mutilated – and then got caught trying to kidnap a neighbor girl. He was hung in the street in the middle of the night. They say his ghost still lives there, and I can’t say I don’t believe it. There were several times I felt a chill on my neck and also we saw some strange shadows. The tour guide told us that often people see the shadow of a chain behind the window wiggle when talking about him, and sure enough, it was wiggling. Suggestion? Trick of the eye? Minds playing tricks on us? Maybe he has someone who makes the chain wiggle when people are there. I don’t know. But it did creep me out. The rest of the house is just as creepy in it’s own way. Here is a link that talks about it a bit. http://blogs.westword.com/showandtell/2011/10/top_ten_creepiest_ghost_sighti.php

The wiggly chain

I thought the first part of the tour was excellent. He basically told us the histories and the information they had received on their “paranormal investigations”. Unfortunately after a house or three he started talking mostly about his son and wife and their psychic abilities and their “phone to the dead” and their business dealings. Even if he had just stuck to “on a tour once this happened” and briefly told us about something creepy that happened to someone, that would have been interesting to me. But the descriptions of what his son did or what they felt was going on in the house didn’t blend in with the stories and it made it difficult to follow the actual ghost stories. It also sounded a little self serving to be honest… though I don’t know if it was because of the advertising feel or the name dropping part…

I would have much preferred the stories and history to be the main focus. He did say he doesn’t always do the tours, so maybe that isn’t always a problem.

In the end we had a lovely time, even if we got a little tired in the end. The tour guide took us on a longer tour than normal, which was cool because one of the last houses was very interesting to me. We saw a lot of beautiful buildings and blocks, and spent the evening outside in the fresh air with good company.

I would definitely recommend going on a tour like this. Even if you don’t believe in ghosts or spirits or hauntings or anything like that, it’s just a fun way to learn about history you won’t normally hear. The darker side of the area, so to speak.

Geneaology

I have been doing work on Ancestry.com. I have never known much about my mother’s side of the family and that is mostly what got me started on it – that curiosity. But as you go along and find out little stories, family histories, see pictures even – it becomes more than a curiosity. You kind of feel like a detective, looking at census rolls and trying to see if that family matches up to the information you already have on a member of your family. Seeing that my great, great, great grandpa was a farmer who never learned to read and write… It really kind of becomes a way to see into the past a little.

There also comes a point in the research that makes you much more thankful that you are a woman NOW instead of back then. And, I would suppose, this must happen for people of color too.

One example: My great great grandma had 13 kids. That’s a whole lot of kids. She must have been much stronger than me. Her grandma had 10, but several died in childhood. That thought makes me sad, though I know it was part of life back then.

Another example: in the 1840′s US Federal Census (and before), there is little information to give us details now. There is a column in which the head of the household’s name is listed. All men on my great great great great grandfather’s page. I assume from books I have read that if your husband died you would return to your brother’s house or your father’s. Or possibly become employed under another man’s roof. Then there are two larger columns, split into many smaller columns. There are numbers in those columns. The two main columns are “Free White Persons” and “Free Colored Persons”. (If you go back just one more census there are columns for slaves and servants too) Then those two columns are both split into two columns – “male” and “female” and then those four columns are split into several column with ages – under 5, 5-10, 10-15, etc for the “white persons”, under 10, 10-20, etc for the “colored persons”. 

This really hit me today. I mean, back then a wife or child or mother or sister or mother in law was reduced to a 1 in a column. And at least here, they might not have names, but they do have ages. Go back and look 2 more censuses back and they are just a tick in a line of tally marks. No names, no ages, just “free white female” or “colored slave” or “free white male” for a male child.

I can’t imagine living in a time when everyone – women, children, men of color, were property of the head of their household. I can’t imagine living in a time when having more children was better because you needed them to help work and support the family. I can’t imagine living in a time when my 6 year old son would be helping in the fields during the harvest and planting season instead of going to school. 

It sure gives me an amazing perspective on how far we have come.