Tonight, we celebrate the small victories because we are fully aware how important the little things are.
I get to keep my spleen for 6 more months. (And maybe even longer!)
The surgeon said that the hamartomas are there. They are large, but they are stable. Stable is a nice word. So, because they are stable it implies they are benign. This is another nice word. The game becomes seeing if they remain stable. So, in 6 months I will have another MRI. If they have changed – it comes out. If they haven’t we can continue to talk about keeping it.
Makes me wonder when keeping our organs became cause for celebration.
That is definitely in the “Post Cowden’s Syndrome” world.
You know I have wondered on and off how you actually “beat” Cowden’s. Is it by coming through with the most organs still intact and cancer free? This is such a strange, relentless disease. It’s research, while still in its infancy is coming. But, I have to wonder how much more they will know a year, or 10 years from now. And, whether I will like any of it.
We are waiting. And we know that we are not alone. We are waiting for Meghan’s results, and its nail biting, agonizing waiting. But, Felix and I talked tonight and wondered what news would make us happy. There was no easy answer.
See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous. They had scored a 3 out of 5 on some scale they use. He told us they would turn. We just couldn’t predict when.
So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious. But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.
So, here we are 6 months later. Tomorrow will mark an agonizing 2 weeks since we went for this sonogram. Waiting. Worrying. Wondering.
When they tell you its “when,” not “if,” it changes things. No matter what they tell us there will be an anxious, uneasy feeling attached.
This is the game with Cowden’s Syndrome. It’s almost like a time warp. A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.
Six months seems to be all you really get. Well, now what I have lost a few organs, I get a year on those follow ups. But everything else is 6 months. For both of us.
I tried to sync them up. So that maybe the worry wouldn’t seem continuous. But it hasn’t worked yet.
I try not to think too far ahead. You know what Mom says about planning anyway.
So, we take it one day at a time. Sometimes one hour. Or, on this never ending road we call Cowden’s Syndrome – one step at a time.
I am patient – sometimes.
I am also wise – sometimes.
The trick really might be meshing the two.
I got a call this morning from Dr. S. The biopsy is scheduled for Tuesday at 12:45. Pleased to have it scheduled, quick math told me it would still be a week before we had a definitive answer. But at least I had the wisdom to shut my mouth and be grateful to have it scheduled.
My next question was about anesthesia. Had they decided to give it? In FNA (Fine Needle Aspiration) thyroid biopsies, anything more than a numbing lotion is uncommon. But Meghan had such TRAUMA from her FNA at another hospital in November of 2011. We had to push.
I had just told this child she could have cancer. I just told her she was likely looking at another surgery. She was unaffected. “I will have whatever surgery I need to. Just make sure I don’t have to be awake when they put those needles in my neck!”
All day I carry my phone everywhere. I literally put it down for 3 minutes and missed the call about the anesthesia. So the voicemail said, “We need Meghan at the hospital at 9AM tomorrow (Friday) to clear her for anesthesia.”
“When? What type? Why? I can get you a cardiologist report from December. I can be to my pediatrician in 30 minutes, and you just took blood on the 27th.”
“No, we have to see her here at 9Am.”
Patience and Wisdom.
I had pleaded for the anesthesia on her behalf. Now I would pay the price. Very careful not to take days off after my attendance debacle last year – I guess I will be at Sloan tomorrow, ensuring the anesthesia my kid asked for is in place. She doesn’t ask for much.
Working hard on gratitude, I am relieved at least things are moving. Not on my schedule, but progress nonetheless.
So then my oncologists office called. They want me to see the surgeon. The surgeon we first talked about a month ago. The surgeon who had little more information than he had on December 7th after my MRI. The surgeon who insisted he needed the sonogram, but whose system at the hospital cannot upload it. No one thought to send me for another abdominal sono at their hospital – even though I asked. They would like me to see this surgeon at 10:30 Weds. They will have to have patience now. I have a kid to take care of first. If they were in such a rush I could have been healed by now.
So I am waiting still to hear from my car insurance carrier who somewhere in the midst of all this chaos decided I was totally responsible for the accident where I suffered a DIRECT HIT from a car who took no action to avoid me. Waiting to hear exactly who that letter of appeal gets addressed to.
All of these things that keep happening, keep me from seeing my Grandparents as often as I would like to. My heart weighs heavy. Time and stress are hard to manage.
Patience, I am convinced – is more than a virtue. It is down right necessary, and almost debilitating with exhaustion.
Patience for me is hearing, “It is likely your child has cancer,” and then WAITING to take care of it.
I get that in the scheme of things thyroid cancer grows slowly, and 2 weeks won’t make or break things. But this is my little girl we are talking about. May God bless me with the patience to get through the weekend.
I am waiting.
I am tired.
I am angry.
I purposefully picked the best hospitals.
I searched out the best doctors.
My goal was to avoid useless waiting.
Waiting for it to ring.
I think my new case has marks from the imprints of my hands.
I don’t know what I want… but I want to get out of “the waiting place.” I spend too much time here and its unhealthy.
Thursday they said the biopsy should be scheduled by Friday or Monday. It’s Weds. at 7:30 PM. No worries. I have called. It didn’t help.
It’s a small nodule, the one they are concerned about. It is less than 2cm. But, excuse me for being anxious -even 10 year survival rates of about 95% serve as little consolation when the numbers refer to your little girl.
And what about my damned spleen? Clearly not a medical emergency, but the holidays messed with the waiting there too. I was told 9 days after they received the CD of my sonogram that it was blank. Really? 9 days? No word back from them about a plan either. I especially loved the part right before Christmas when my oncologist told me hamartomas are “almost always benign.” Great. See, prior to that conversation, I thought they were ALWAYS benign! UGH!
I am trying. And I will be fine. I guess some days I am allowed to be tired and grumpy like the rest of the world. As long as I remember…
Better get some loud music and another glass of wine. I think I need to dance the wait away!
I mean no disrespect to the “Man of Steel,” but I think parents of kids with chronic illnesses have it more difficult.
We need “Nerves of Steel.”
I am trying to settle in to bed. Tomorrow bright and early we head out for the thyroid sonogram and appointment. My stomach is twisted in a million directions.
At this point I should be calmer. I should relax, and have faith – as I am sure that everything will somehow be alright. Yet, still, it is so hard to keep your mind from wandering.
I will take it all, every illness, every horrible twist and turn that this wretched Cowden’s Syndrome will toss at me. Just PLEASE… leave my kid out of it.
Today we stayed home. The three of us, (and Allie and Lucky) as a family. We did some work, and we rested. We also did a little bit of shopping.
My girl had only three things on her list for Santa. She asked for an American Girl Doll, a dog ring, and money to buy toys for the children in the hospital. Santa left her $100. Today she carefully selected some toys, “a kid stuck in a hospital might appreciate.” And she would know. She has spent her share of time stuck in a hospital.
Such a great kid. I am just so proud of her compassion. We are blessed. Please, dear God… hold us close tomorrow.
I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”
Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.
We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,
And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.
So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.
If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.
Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.
Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.
Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.
So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.
But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.
I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?
I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.
Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.
We are special. We are 1 in 200.000. There are 2 of us. And I am tired.
But, I haven’t lost my perspective. We are so blessed.
I should be sleeping. It is 1:30 AM. This is my second post for the night, because I can’t stop and sort out the overflow in my head any other way.
Maybe you have been following the saga of my poor spleen… or not. Either way, my spleen has issues. Or, rather, my doctors have issues with my spleen.
The first time the hamartomas were detected on my spleen was probably when I had an abdominal ultrasound as a screening after my diagnosis. When I saw my oncologist in August, she wanted an MRI done of the spleen so she could have a basis for future comparison. When she called me with the results in August she was ready to send me for a surgical consult, based on the significant size of the 4 hamartomas (courtesy of Cowden’s Syndrome – aka PTEN Hamartoma Tumor Syndrome) on my spleen. Since the spleen itself is only about 11 cm long, the hamartomas across the top equaled or exceeded the length of the spleen. At the time, I was coming off of a double mastectomy in March, and a hysterectomy in May. She was forcing my hand to schedule a colonoscopy (which I did,) but I pleaded with her for 6 more months with my spleen. Reluctantly, she agreed.
So, when I had the car accident and I was sent for an abdominal ultrasound, that started the whole process over again. The oncologist looked at the report and ordered an MRI. I went for the MRI and tried to set up the surgical consult. The surgeon, who is a surgical oncologist, thinks the spleen needs to come out, but he wants me to see a different surgeon to see if it could possibly done through laproscopy first. But, he wants to talk to my oncologist before he will set up an appointment to even evaluate my case, and my oncologist spent last week in California at a conference.
So, instead of February… it is now December, and I am waiting. Waiting to have the fate of my spleen determined.
Well meaning people say to me, “Don’t worry – you can live without your spleen.”
Sometimes well meaning people should smile and nod more, and speak less.
Yes, I KNOW I can LIVE without my spleen. You can also LIVE without your boobs, your uterus, your cervix and your ovaries. You can LIVE without your gall bladder, and your appendix, and your thyroid, and one kidney, and part of your liver or lung too. But, just because you CAN do something, doesn’t mean you should.
I am thinking of asking for a fake fish for Christmas. One that will remind me I have been gutted like a fish this year. One that will also remind me that, no matter how many body parts they take, you have to KEEP SWIMMING!
Monday or Tuesday I will talk to a doctor about my spleen. I would love to keep it. I just think we have gotten along nicely for the last 39 years. And, its mine. But, I will listen to the doctors (after I ask them EVERY hard question I have,) and I will do what is best, and safest.
Heck, I didn’t go through all of this past year to be beaten by my spleen….
The Insurance Agent called Friday night. He told me my car was a “Total Loss.” I think I knew that after I saw this picture the first time, but it was still a little hard to hear.
Even though I understand the term “Total Loss” has specific connotations in the insurance world, the terminology wasn’t sitting quite right with me. To me, a “Total Loss” means I didn’t learn anything. It was a waste. I took nothing from it. That couldn’t be farther from the truth.
I have taken something away from every experience I have had in my life, especially the very trying ones that seem to be pelting me like hail on a blustery day. Sometimes what I take away is positive, and sometimes – not so much. But I always, always learn something.
1. No matter how long you stop, and no matter how hard you look, and no matter how sure you are that it is safe to go – a speeding car may hit you anyway.
2. If there are no witnesses to an accident – there is no way to “prove” excessive speed. This is the case no mater how many times your car spun around.
3. When you ride in an ambulance its less scary when you take someone you know. And, there are people kind enough to ride in the ambulance with you even though they hardly know you at all. There are real live angels among us!
4. When you are in an Emergency Room of a local hospital – burn your socks after walking on the floor, and don’t look too closely at the walls. Don’t expect the doctors to have any idea – or to really care what Cowden’s Syndrome is, and how it affects your body.
5. There are some really really nice insurance people, and some really obnoxious ones.
6. Many doctors do not accept “no fault” insurance, so finding one to check you out may be a challenge.
7. The pain is worse before it gets better.
8. The pain of being told you are more liable than the guy speeding through the school zone simply because th stop sign is on your side of the intersection may not be physical, but it hurts your pride. Especially when you know you handled it right. It is hard to get over hurt pride, but you can find peace with a clean conscience. So glad I have one.
9. It doesn’t matter much to anyone that the guy who hit you didn’t even try to stop, swerve, honk, or perform any evasive maneuver before plowing through you. It’s all about the stop sign.
10. Whiplash, and muscle spasms are real. Muscle relaxants are useless because they can’t be taken during the day when you have to be a full-time teacher and mom, but they help you sleep a bit at night.
11. When you stop and consider your accident scene, and you realize all the things that could have gone so much worse, you are reassured that the angels really do watch over us. (Thanks Angel Meghan… and all the others)
12. When you have Cowden’s Syndrome, and hamartomas on your spleen, they will send you for an abdominal sonogram right away, and then – like everyone else around here- be totally unsure what to do with the results.
13. Fax any important test results to a doctor you trust. I am grateful the spleen didn’t rupture, but for those of you on my team, cheering for it to stay – cheer louder please. The hamartomas are growing. I will talk to my doctor at NYU this week.
14. When you are really at your lowest point, hurt, aggravated, and discouraged – make a decision to DO something positive. After realizing a child could have been easily injured in this mess, I have established a petition for our local councilman to reevaluate the speed limit on the street where the accident occurred, and to label it a school zone, as well as to consider multiple two-way stops and speed bumps. I have reached out to the local “Improvement Society” who already reached out to DOT on my behalf. I have parents in my school fully supporting me and working to gain signatures on a petition. Their children’s lives are in danger every day. I want some things to change to make the children safer.
15. It is more fun shopping for a new car when you are ready to buy one, but my husband is helping make our current search more pleasant. Always marry someone with a sense of humor.
16. Wear your seat belt! Darn it if Cowden’s Syndrome isn’t going to kill me – a car accident won’t either. So glad I was buckled up.
17. Those silicone implants can take a good hit. Thankfully – nothing popped!
18. I am not going on the teacups at Disney World ever again. I have had enough spinning for a life time!
There… not a “Total Loss” at all…
I am sitting in the basement on the computer trying desperately to ignore the cricket serenading me from some other corner of the room. My family has been asleep for hours. Silently I have struck a deal with this insect, that if he stays far from me, I won’t try to squish him.
Not a big bug fan, and since a quick google search shows me a photo of one of his distant cousins, I have strengthened my resolve not to meet the cricket tonight. I don’t mind bugs, when they live outside where they belong. I just don’t like them taking residence in my house!
So, he continues to sing, as I put 4 stamps on the CD of the sonograms of my abdomen from April and last Novemeber. I included the reports and a cover letter to the oncologist. Off they will go tomorrow, and hopefully they will safely arrive. See I am really and truly ready to hear the definitive word that the spleen stays. One more week…
Week – what a week it was. I swear I am still sore from the boxes earlier in the week. A true sign that I lost a lot of strength post operatively. But, I am moved in. And, after 2 hours on a Friday afternoon after the students, and most of the teachers had left – I am largely set up. Finally!
Meghan loved her 4th grade teacher, even if it isn’t the one she originally wanted. This one has all the skill, kindness and compassion of the other. It will be a great year for her – academically.
Still so many medical questions unanswered. I am so intrigued as to how a pituitary that is over working can be too small. I am even more intrigued that this keeps only me, and apparently the cricket, up at night.
Answers. I need answers instead of more questions. But I fear it just isn’t to be. So, I will head to bed before I am forced to meet the insect that has been singing my lullaby for the last 2 hours.
So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing. Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the anxiety they used to. I have held onto Meghan‘s shoulder through countless knee MRIs, and this past year have had quite a few of my own.
Today it was an abdominal MRI. Now if you have been following the story at all you know my abdomen is missing a few things. You may or may not know that there is also the issue of a harmatoma (basically a fatty tumor) on my spleen from this PTEN harmatoma tumor syndrome. Yep, that’s the other big fancy name for Cowden’s Syndrome – or more technically it is the umbrella term that covers Cowden’s and several other syndromes.
So, why the MRI? Well among the other neat cancers that seem to come with this genetic mutation, is renal cell carcinoma. A recent study, the same one that put the lifetime breast cancer risk at 85%, placed the risk of renal cell carcinoma in Cowden’s patients at 33% Yep, quiet old kidney cancer – hiding there until it causes you a problem. So, they like to screen for it – twice a year with an abdominal MRI.
Part of me wishes they could just do the kidney. You see I have this theory about taking the used car to the mechanic… You just sometimes find out more than you wanted to know.
I really am not in the mood to lose any more organs. I think I have reached my quota for the year. And I have to tell you, this is one hell of a way to lose a few pounds.
So, somtime tomorrow or Monday the oncologist will call me. She will tell me that the kidneys look great. She will tell me that the harmatoma on the spleen hasn’t grown, and it can stay right where it is. She will also tell me that the stones they saw on ultrasound in my gallbladder a few months ago are no problem at all. She will tell me all that because that is what I need to hear. And hopefully it will all be true.
I need it to be true. Because I will be busy. An appointment right before the MRI with a new GI set me up for the “necessary” screening endoscopy/colonoscopy on September 18th. The risk of colon cancer is a meager 9%, up only a few % points from the general population, but no point leaving any stone unturned I guess!
Some days I wait for the break. The time when we will be without doctors. Then I realize this is all so new. They are all so scared and confused they are doing all they can when they scan this, study that… Hey, it worked for me when they saved my life with the breast cancer. And, it will work to keep my girl safe as we scan her thyroid religiously.
I am tired. I would be lying if I said anything else. I am TIRED of doctors. But, as I said before… I will keep going, necause there is no choice. Plus, “Everybody has SOMETHING!” https://beatingcowdens.wordpress.com/wp-admin/post.php?post=693&action=edit
At least I am not afraid of the MRI tube anymore!