oncologist – Page 2 – beatingcowdens

“If I get to keep my spleen…”

Published on October 1, 2012October 1, 2012 by beatingcowdensLeave a comment

As I sat in the dentist’s chair a few weeks ago getting another bridge organized, I enjoyed pleasant conversation with my dentist. I know, that may sound strange, but really she is quite pleasant, and very talented at what she does. She is also the Mom to twin friends of Meghan‘s from her class, so we have known each other over 4 years now. She is a mom, wife, dentist, photographer, fellow blogger, volunteer, and a generally nice person to be around. I am grateful to call her a friend.

As I was getting ready to go she asked me when she could schedule me for scaling and root planing. After I had her explain the depth of the cleaning that was involved, and even after she explained WHY it was a good idea, my instinctive answer was , “NEVER!”

Over the last 6 months alone I have had breast cancer, a double mastectomy, with reconstruction, and a hysterectomy. I have been scanned, had countless MRIs, and just recently completed a colonoscopy/endoscopy. To say I am DONE being poked and prodded would be the understatement of the year.

So, as I listened to her careful list of reasons why this scaling and root planing procedure is a good idea, I just wasn’t sold on the concept of ANY more pain.

I told her, “When they tell me I can keep my spleen, then I will make the appointment.” She laughed out loud. But this, this is what life with Cowden’s Syndrome has become. I am willing to celebrate being allowed to keep one of my organs, with a dental procedure that is probably quite necessary anway.

But, I feel like life in this body is about triage. I have to take care of things one step at a time.

So, the oncologist called today about my spleen. They were comparing the ultrasound pictures from April on 2012, and November of 2011 with an MRI in August 2012. She sent it to a lot of people to look at. The answer..maybe.

Really, are you surprised?

You see the ultrasounds showed identical, medium size “hamartoma.” (PTEN Hamartoma Tumor Syndrome is the umbrella term for Cowden’s and several other related Syndromes) But, the MRI showed 2 distinct, and one fairly large “hamartoma.” The good news about these is they are benign. The problem is – if they follow the body’s tendency to grow and grow things, they won’t be able to stay there too long.

I know, you can live without a spleen. You can live without a uterus, ovaries, a cervix, breasts, and a whole host of other things. But, just because you CAN do something, doesn’t mean you SHOULD.

So, I will go back in December and repeat the MRI. While they are there they can make sure the tiny cyst on my kidney stayed tiny too.

As soon as they are done. Once they tell me it is all stable, and I can keep my spleen. I promise, I will be a big girl and get my scaling and root planing done.

At least I have a kind, gentle and pleasant dentist – and she is looking to keep things IN, not take them out!

AND: http://gracelynsantoschronicles.blogspot.com/

Biting through the cage

Published on September 11, 2012September 11, 2012 by beatingcowdens9 Comments

My dog Lucky is a bit neurotic. She just is. So when I came home today to find she had chewed through half her metal crate – literally lifted the bar off at one point, I wasn’t all that surprised.

Lucky (the black one) and Allie, playing together.

It got me to thinking though. No one, or thing – really likes to be caged. The “girls” get plenty of time to roam free when we are home, and when we are not, but we have to make the best decision for them each time.

What struck me thought tonight, when I saw a piece of the metal crate literally bent off, is exactly how much she doesn’t like the crate, and how much she wants out.

We feel like that sometimes here – about PTEN, and Cowden’s Syndrome. We feel like we are stuck, in a locked crate. We want to run free, but the daunting tasks that lie ahead make it seem like an “Escape from Alcatraz” might be necessary.

Meghan’s fevers this weekend scared me. I know her immune system deficiency may stand alone from Cowden’s, but that doesn’t make it any easier to process. And, I swear if they were not related before, they feed off each other now.

The fever was gone Sunday night. It made another showing of about 102 and then that was it. She stayed home Monday with our friend Patty, and was treated like the princess she is. By the time I came home Monday she looked so much more like herself.

We went to the pediatrician Monday night. He wants me to contact her oncologist and get a referral to a neurologist to address the intermittent headaches she has been having. Her oncologist who Emails quickly, got a set of all the recent labs and the recent brain MRI. She is going to get back to me. I have no idea where we will fit one more doctor in – but we will figure it out.

So this morning, we woke up feeling ready to go. She responds so well to antibiotics, that we were seriously on the mend.

After she brushed her teeth she complained her gums were bothering her. I didn’t see much.

Tonight she said it was much worse. There is a growth on her tongue. Right on the edge. It grew today. During the day. No idea why. No clue what to do about it. I don’t know but it reeks of Cowden’s and its NASTY overgrowth – of everything.

I guess I will deal with it tomorrow, right after I call on the throat culture and find out if we need to see the ENT.

Someone told me today I looked tired. Not me.

If you need me, I will be biting my way through the crate, getting rid of one bar at a time. Maybe Lucky las the right idea.

Serenade

Published on September 7, 2012 by beatingcowdens3 Comments

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.

Random Reflections – nothing profound today!

Published on September 2, 2012 by beatingcowdens3 Comments

We tried another church today. This time all three of us went. A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless. Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.

God has a plan. And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.” I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me. So we will see. At least we worshipped together as a family – for the first time in months!

It was gray and overcast a lot of the day. Glad we got in a swim yesterday. It may have been the last one. We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner. Hoping its nothing too serious.

We got to spend the afternoon with my grandparents and my parents. Last minute plans are always a treat when we get to be with family. Pop was 93 last week. Grandma will be 92 in 2 weeks. GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.

The oncologist’s nurse called me Friday. She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things. I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend. She told me I could get it Tuesday. I chuckled.

No matter how hard I try… “I plan, God laughs.”

I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday. I will not physically be able to have the CD burned until Friday. They will get it in about a week and a half. At which point she nicely reminded me that it could be serious. To which I replied quite simply, “No it can’t, because I don’t have time.”

She was appalled I think. But, what I meant was, I have undergone 2 major surgeries in the last 6 months. I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one. Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!

I am about done with all these doctors!

So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.

I will at some point get that CD. I will get the results of Meghan’s blood test and MRI. I will call Meghan’s school and sort out the busing mess that is developing for the first day of school. I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed. I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.

I will get back to work. We will get back to homework, and a schedule that hopefully involves more kids and less doctors.

There will be stress, and tears, and nervous stomachs, and excitement.

And for Mommy – there will also be wine. LOTS of wine!

Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!

“The Velveteen Rabbit”

Published on August 28, 2012August 28, 2012 by beatingcowdens6 Comments

velveteen rabbbit 1 — by Margery Williams

“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you….

…”It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept.” Generally, by the time you are Real, most of your hair has been loved off. and your eyes drop out, and you get loose in the joints, and very shabby. But all those things don’t matter at all because once you are Real you can’t be ugly, except to people who don’t understand…”

I spoke to the oncologist today, about my MRI. She had really no better or clearer information than the nurse I spoke to Friday. The harmatomas are large. There are several. They might be able to stay, they might not. She requested the sonogram from April to see if it is worth a comparison. I will get the CD and the reports and send them along. I will let the doctors again analyze the same few articles on Cowden’s Syndrome that exist. I won’t tell them that I have likely read all of them myself too. I will let them tell me if the spleen stays or goes.

I think it is that conversation, combined with the one I had with Meghan that brought the story of The Velveteen Rabbit to my mind tonight. As we are buying clothes for school and trying to keep her quickly developing body comfortable and appropriate, she asks about my scars. There are quite a few, the lipoma in my neck, the partial thyroidectomy, the C-Section, the hysterectomy, but she focuses on the mastectomy. and the scars from the reconstruction. She asks sometimes to see them even as they are covered. She asks if she will get to decide when to have that surgery. “IF” I stress, “IF!” You don’t know… But she knows. She is preparing already for the day it is her turn. It twists my stomach in a knot.

We have had between us more than 25 surgeries, large and small. We have scars of all sizes – inside and out. But we are “Real.” In a deep, important sense, we are “real” to each other.

I am in limbo… waiting. But it is ok. I live in a house where I have become “real.” And, even on my darkest days, “…once you are Real you can’t be ugly, except to people who don’t understand.”

“I plan, God laughs.”

Published on August 24, 2012 by beatingcowdens1 Comment

My Mom says this… a lot. And she is usually right. I am a planner by nature. Mom, although sometimes reluctant to admit it, is a planner too. The difference is that the wisdom of her years have helped her tone down the level of planning so it is a bit less obvious, and she has also – wisely- learned to keep many of the plans she does make – to herself.

I like to organize everything, and quite simply put – Cowden’s Syndrome is chaos. At least right now.

I mean eventually maybe it will fall into a neat little schedule of screenings, and routine visits, but right now – not so much. If you saw the legal size yellow pad on my desk you would chuckle. I have appointments planned until February of 2013. And, at first glance to list doesn’t look too bad. I was proud. I got to these appointments early. They are all routine. They will all happen after school or on vacation days. My terms. But then we get to the unscheduled ones… and the follow ups… and the new visits. That’s when things start getting hairy.

I called the oncologist‘s office today to get the results of my MRI. The oncologist is away until Tuesday, but a very kind nurse called me back in about an hour. She said, “Everything is benign.” I wasn’t sure to be relived, or panicked. What “everything?” So she started with telling me my liver is just fine. (Well thank goodness, because I hadn’t even THOUGHT to worry about my liver.) She then proceeded to tell me there was a “small cyst” on my kidney, but that was probably no big deal. (And probably not a worry unless you live in a subgroup of people that have a 33% lifetime incidence of renal cell carcinoma.) She continued by telling me my spleen was “a bit more involved.” Hmmm… never have those words started a positive conversation.

The last two times I have had abdominal sonograms, both have very matter of factly stated that there is one 3.5 cm harmatoma on my spleen. Ok, I had decided all by myself… if it stays 3.5 cm and behaves, we will just leave it there.

Well, apparently there is a “vascular lesion” that is a “significant” size, and “several” small harmatomas on the spleen.

So I said, “what does this all mean?” That is when she said we would have to wait until the oncologist returned to determine the necessary next steps.

“Can I have a copy of the report?”

“I would rather not send it to you until you speak to the doctor. I just wanted to reassure you there were no malignancies. She may want you to come in.”

Which is where I did laugh out loud. Come in – to hear a summary of what I was just told? No thanks. Just tell me what I need to do next and I will get it done.

I looked at my nice yellow pad, where September previously had no appointments, and I see the colonoscopy written in for the 18th.

I have to say I was pretty sure 2 major surgeries for me, meant I was done for the year. There goes that planning again. Maybe I will keep my spleen and its harmatomas forever. Maybe they will make me have it out. Truth is I have no idea. And I can’t plan for it at all.

School starts in a week or so. My life apparently doesn’t always jive with the school calendar. I will have to roll with it.

More importantly, Pop’s birthday is tomorrow. He is 93, and a true inspiration. My family will gather at my house to celebrate him. I couldn’t be more excited.

all-about-me — I really think I am OK with this concept, but we all need a reminder sometimes!

I will get my results Tuesday, and life will go on. It will all work itself out, as it has for… well forever. I will try to keep the planning in check. I really do try.

The only thing I am planning tonight is how many chairs I need for Pop’s birthday celebration!

Whose afraid on an MRI? Not me – practice makes perfect!

Published on August 23, 2012August 23, 2012 by beatingcowdens4 Comments

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.

http://www.ncbi.nlm.nih.gov/pubmed/22252256

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!

What do these three have in common?

Published on July 27, 2012July 27, 2012 by beatingcowdens1 Comment

Many simple species, such as the star fish, have the ability to regenerate severed appendages. [©Jupiter Images, 2008]

The leopard gecko, like many other lizards, is able to voluntarily shed its tail as a strategy to escape predation. These lizards are able to develop a replacement appendage through epimorphic regeneration that resembles the original, complete with nerves, blood vessels, and skeletal support.

DSCN1349 — Days after the tonsils were removed in 2008

So, what do these three have in common? Give up? I bet a few of my Cowden’s Syndrome friends could guess…

They all can regenerate tissue that has been removed!

Except the first two tend to do it in a much more productive way.

I had heard tell that lymphoid tissue (especially the thyroid and tonsils) could regrow – especially in Cowden’s Syndrome patients. (It makes sense in a way, PTEN is a tumor suppressor gene that is broken, so cellular overgrowth is common.) But, I chose to ignore it.

Sometimes ignoring things for awhile allows you to deal with other things.

When Meghan had her tonsils and adenoids COMPLETELY removed in May of 2008 she was in the middle of a 12 week strep infection. Three months of antibiotics, and they were still pulling “heavy positive” cultures every 2 weeks. By the time they were to be taken out she was admitted for several days of antibiotics prior for fear of rheumatic fever. She was a chronic, almost constant strep sufferer.

Then for about 2 years – nothing. No strep.

I don’t remember the first time it came back. It was about 2 years ago. A full year before I ever heard of a PTEN mutation, or had any idea what Cowden’s Syndrome had in store for us. I thought it was odd, the strep coming back without the tonsils, but I chalked it up to a rotten immune system.

Slowly the cases have become more frequent. It is almost constant. We don’t leave the pediatrician without a throat culture and a script for an antibiotic. Not all the cultures come back positive, but you can tell. The food avoidance, the tough time swallowing, the swollen glands, the puss in the throat. You just know.

Lately it has been about once every 3 weeks. Way too many antibiotics to be good for anyone, but strep is way to serious to ignore. So, we keep treating, and wondering.

Today we had a routine visit to the oncologist. I mentioned the strep. She looked in the throat. She said, “Have you ever considered having her tonsils out?”

That’s when I knew we were in trouble… again.

Guess I should schedule that visit to the ENT!

I Am Blessed

Published on July 25, 2012 by beatingcowdens4 Comments

sharp stabbing pain — This cartoon is on the front of Meghan’s 4 inch medical binder. We have sometimes decided whether or not to keep a doctor by their reaction to this TRUTH!

It is late. I should be asleep. Morning comes fast and it is already after midnight. I just can’t seem to find a way to unwind.

I just had a long chat with a ‘new” friend. That helped a lot. But still here I am, trying to get these racing thoughts out of my head before I rest.

I saw a new oncologist today. The geneticist insisted I have one to follow me and one for Meghan. Except I was having a hard time finding one who didn’t think Cowden’s Syndrome was contagious. (Ok, perhaps I exaggerate, but they weren’t anxious to see me.)

So the geneticist sent out an Email on Tuesday to some of his friends. By Friday he had a name for me, (which means the genetecist is a KEEPER!) of a doctor IN network, and I met her today.

She is lovely. Of course, by already having the double mastectomy and the hysterectomy, I have made her job much easier. Now she gets to push me to the fun stuff. Next up- colonoscopy, and kidney MRI. So tomorrow I will call to get the GI appointment, while they work out the authorization for the MRI.

And all the while I will mourn a bit for the summer that wasn’t meant to be. This was more, a necessary doctor “catch up period.” I think by the end of August we will have at least 25 appointments done between us. And those are just the ones scheduled right now.

So, just when I start to get whiny and cranky about wanting some alone time to shop, or some fun time to swim, I remember. Were it not for the work of the angel on my shoulder, that pushed my “prohylactic blilateral mastectomy” in March, I would have likely been spending this summer prepping for cancer treatment.

So, we still get our trip to Disney, and there is always NEXT summer…

I spent the last hour preparing for Meghan’s oncologist visit on Friday. We haven’t seen this doctor for months. There have been a few things going on. So, I faxed her 32 pages of what we have been up to. She wanted to review it before the appointment.

I posted the cartoon because I had her binder out while I was preparing the fax. I laugh every time I read it because even after all these years it is still true. Even with our diagnosis of the PTEN mutation, and Cowden’s Syndrome, even with the precancerous thyroid nodules in Meghan, and her early puberty, she still has pain. Every day. And not one of these doctors that we take her to can tell us why.

I thank GOD every day for her stamina, and her spirit and her spunk. She is my love, my reality check, my perspective, my reason for being. I feel displaced right now, from my church, my comfort zone – but not from God. Even in the midst of all the chaos and uncertainty, I have a husband and a daughter that are beyond compare. God has us in the palm of His hand. We are blessed. And it WILL be OK!

Tennis anyone?

Published on July 5, 2012 by beatingcowdens2 Comments

I don’t play tennis. Never have. I am not that quick, athletic or coordinated. But I have always wondered what it is like to be the tennis ball. Back and forth, back and forth. No real purpose, no one stops to look at it. They just quickly replace it when it goes out of play.

I am starting to feel a bit like a tennis ball these days.

I have gone through more doctors for Meghan and I in the last 12 months than I care to count. They are either interested in helping, but too confused to figure it out, or, worse, they are too lazy to try to figure out anything to do with a syndrome they have never heard of.

I can teach them the basics – if they would listen. PTEN is a tumor suppressor gene. Ours is broken. We make tumors. Especially in certain spots. When things are weird, look for them. Regularly screen for them with the same tests you order all the time. Just screen more often and before we have symptoms. That will help us live.

I have journal articles. I have my reports, and Meghan’s too.

I was told last year to get myself an oncologist to manage my case. The one close to home lasted only a few months. Irreconcilable differences. Maybe he had wax in his ears.

So I took a break from looking. The double mastectomy, the breast cancer, the hysterectomy – they took some time. Now, as I am healing from the hysterectomy I get a referral from my gyn oncologist to a general oncologist she knows very well.

I called his office. I faxed 39 pages of my test results and history. They called to say I needed someone else – he wasn’t right for me. No, I insisted. Dr. B said he was the doctor I needed. I faxed him and article from the Journal of Clinical Cancer