Snip, sewin' away

I haven't quilted for five years now (except for a couple of thank-you gifts). This is huge.

Somewhere in there with my and Ty's cancers, I made a bargain with The Universe: I give up something I enjoy, You leave us alone.

So that really worked out. One spine fusion, one hip surgery, two rounds of chemo, multiple surgeries, two radiation treatments, a hysterectomy and several herniated discs later.....

I decided to do something I love again. I mean life is going to throw at you what it will, it's good to have coping measures. This group of quilters haven't let me slide off into the dark hole I'd been wishing would swallow me up, they never forgot about me. And now I'm back.

It's a mess, but a joyous mess. And except for accidentally snipping a hole in my pants, it's turning out pretty well. Here is my latest Work in Progress:

There will be two-one for Nicole and one for Ellie. That's 197 yoyos each, in case you were wondering.

Also, sometimes we goof off with Photo Booth.



Lastly, I worked a glorious 5 hours in my yard yesterday. One thing about the weather here...you never know how long the sunshine will last until you're safely in July, so get out while the gettin' is good. I'm stiff today, but it's the kind of hurt that feels good, let's you know you're alive rather than making you wish you were dead. And that my friends, feels amazing.

P.S. Could somebody please tell my body that 3 AM is not a decent wake-up time? Also, three hours is not nearly enough sleep.

I Am Hideous

And I'm okay with that, sometimes you just have to be, and resorting to sister wives 'dos tends to hide some of your major hair faults. This week an MRI confirmed what I'd been thinking all along - that this pain is not just all in my head, it's in my neck

And, not to put it delicately, my neck sucks rocks.

I met with my doctor on Wednesday to discuss the findings and by today they had me in clinic for a shot to my neck. They used fluoroscopy to inject a contrast and make sure they're hitting just the right spot. My nerve is so inflamed that the doctor didn't think they'd be able to get it, but they did. Zing! In a few days I should know if it's going to do the trick. Gnarly neck shot, eh?

As a small public service from me to you: It's never not going to hurt when someone says these words: "You're going to feel a little pressure, maybe a pinch," but by then you're half nekkid with a foreign object in your body, and it's too late to get up off the table. Much like a visit to the ObGyn.

Mr. O and I grabbed some guilt-free lunch (there is a guilt pass on food for the rest of the day when needles are involved).

I came home and had a massage in an attempt to break up the muscle tension. This always ends with a marvelous scalp rub - thus the mega hideousness. I couldn't see the sense in washing and doing my hair this morning when it was just going to end up all greasified this afternoon. I just have my hair's health in mind, you know.  And then I was just too relaxed/lazy/unmotivated to rectify the situation that is my hair. Junior high hair, I believe it's called.

Yes, I took a picture as proof, but I guess I'm not vain enough to keep it to myself. Let's just say that junior high hair might hold the key to the Libyan Oil crisis, if my photo is any gauge.

At least I washed my face and brushed my teeth. Now if I could just convince Mr. O to wear a blindfold, I could probably keep this up until at least tomorrow night. Please, please let this shot work. This pain in my neck/back has gone on for over 5 weeks now, and I'm officially crying "Uncle!"

PS. I have no idea why I could possibly be smiling about the state of my hairs. Except that none of these new developments adds up to cancer. Suh-weet. Have a lovely weekend!

On forgetting and remembering

Some of you have been reading long enough to know that Ty and I went through cancer treatments at the same time about five years ago. That same year, I made a goal to journal every day, and I kept that goal. It's the only time I never missed a day.

A few days ago, I felt strongly that I should share that time with you. And that maybe, by looking back, I'd finally be able to move forward. Sometimes challenges mould us into stronger people, and sometimes they turn us inward, convincing us that we can go it alone. Entirely alone.

Sometimes we forget who we are and think that God has forgotten us as well.

But it does not matter how small we feel, how angry or hurt we are, or how much we've lost ourselves in the bigness of life, we are never completely forgotten. If we are fortunate enough to catch a fleeting glimpse of our potential we begin to remember, and awaken to a sense of who we are.

I've had a year off from most things religious, and it has been a long, lonely year - one that has swallowed me up. I have felt the pain of desertion, and I have to wonder did I move farther from spiritual things because I felt so alone, or did I feel so alone because of my spiritual deficits?

It is hard to go through major medical issues, and have those you once thought were close friends abandon you. It makes you question everything: what is real, what is only a figment?

The one thing that I know is real is my family, those are the relationships that matter most, and they must be carefully tended, guarded. There is more, but I'm not at liberty to share, so instead I wonder if you'll join me in a year of looking back and maybe together we can move forward.

I'd love it if you'd follow me at Chemo Chronicles, and I welcome any questions or comments.

Fizzy Fish Fins!

Last week our family had a little talk about minding our Ps and Qs, {cough, not that anyone here suffers from sailor mouth or anything, cough}. Anywho, one of our solutions was to come up with creative nonsense phrases when we are upset, and I owe the above variation to Stephanie Hansen, famed creator of #Thursketti (Thanks, Stephanie!)

And now, why am I upset, why the need for clever language? As it turns out Ty's last injection did not work and the next option is for Femoral Head Resection. Go ahead and Google it, but basically it is the removal of the top of his femur and wrapping the end of the bone with muscle. And! There is only a 50/50 chance of it being successful, with the healing process taking up to one year or more.

So, Fizzy Fish Fins! We are going to try a little cocktail of pain management meds and hope it gets him through to the Spring (or, fingers crossed, Summer) when he can have surgery.

In other news, Ellie has a new talent. And it is useful for amusing ourselves (aka freaking people out) in waiting rooms.



In yet other news, I get to go to the doctor on Monday because apparently my body thinks it is 80 years old. Good thing I am strong on the outside, because apparently on the inside? I am all Fizzy Fish Fins, (stupid traitorous uterus). Yay! Surgery. It's just what I wanted for Christmas. Not.

Anyway, hopefully we come up with a plan on Monday.

Abnormally Special

I met with my new doctor today (the one who looks like this guy - which, I must say, is a little disconcerting) to review some labs drawn last week. All we discovered is that I do not have a Pituitary tumor. So, great. That's one thing we can cross off the list.

My thyroid lab numbers, compared to those of three months ago (which last week the doctor felt were quite abnormal and did not match up), are the same. THE SAME. But apparently he now considers them to be normal as there is nothing abnormal he can find to attribute them to. Being mysterious is so over-rated.

Scan this summer, so until then no news is good news.

On Becoming Hawt

continued from here

Since my surgery, I had been unable to raise my voice. To call my children in for dinner, I'd step out on the deck, tuck my chin in an attempt to lower my voice further, and then ina booming deep voice call out their names and say, "Dinner!" My voice was beyond husky, it was straight up masculine.

I'd had my thyroid out on October 4th and by October 26th my TSH was measuring 57 (extremely high and doubling every week). This meant that I was sufficiently hypothyroid to undergo my wholebody Radioactive Iodine Scan. I had been told that I would still be able to breastfeed Ellie after the radioactivity had left my bloodstream (40 days). One of my friends had even offered to take Ellie and continue to nurse her for me so that she wouldn't have to bottle feed in the meantime (that is a true friend).

But when I double-checked this with my oncologist, she informed me that I would not be able to breastfeed Ellie anymore after taking even the small dose of Radioactive Iodine (RAI). My RAI scan dose was scheduled for November 4th, the scan and hospital admission for the larger RAI treatment dose for November 7th. She also mentioned that I could possibly increase my risks for breast cancer by still producing breast milk when I received the large dose and to start taking antihistamines (benadryl) to help dry up my breast milk.

Thinking back, I can't believe I went ahead with the treatment so soon after having Ellie. I was going to have to be away from her for 3 weeks in order to minimize exposure to her thyroid and she was barely two months old. Even more than not being able to nurse her, the separation from her tore at my heart.

On the morning of the 4th of November, I nursed Ellie for the last time. I looked down at her face, at her little fingers grasping my thumb, listening to her satisfied swallows and wondering how these next three weeks were going to be without her. I handed her to my mother and drove myself to the hospital to take my scan dose.

When I arrived, they wanted to know when my last menstrual cycle had been. I told them I had just had a baby and hadn't had one. They insisted on drawing blood for a pregnancy test, even though I told them there was no possible way I was pregnant. I reminded them that one has to have intercourse for that to occur and according to memory that hadn't happened since before her arrival. Because when you are a Franken-neck in terrible pain, drained from childbirth and the rigors of parenting and feeding a newborn baby, it is all you can do to collapse into bed at the end of the day, nevermind being more intimate than cuddling. But it didn't matter and of course, the test came back negative.

I was given a pill to take, a cup of water to swallow, and a page of precautions to follow. I went home and fell into bed. I went through the pain of abruptly stopping nursing. I had tried to gently phase out breastfeeding Ellie, but as soon as she took the bottle, I would have a hard time and nurse her again. To say I was ambivalent about my decision to go ahead with treatment is an understatement.

But go ahead with it - I did. When I arrived to take my dose, I was led up to the 6th floor of the hospital to a room tucked in the corner by the emergency stairs and an adjacent empty room. I hadn't eaten anything in case of nausea. It would be considered a nuclear cleanup if I "tossed my cookies." The radiologist informed me that there hadn't been enough RAI to put in pill form, so I would have to sip mine. It was like drinking flat alka seltzer - metallic and nauseating. I was given a does of Phenergan to combat the nausea and told that I couldn't eat for a few more hours. That metallic taste stayed with me for the next few days.

I had brought needlepoint to work on and a magazine to read, but mostly I laid around and watched TV because it was brainless and I was so very tired. I remained nauseous my entire stay in the hospital and the feeling was not helped by the fact that everything they brought me to eat had to stay in my room the entire time. I sat there in my room among the stacks of hazardous waste - queen of the nukes. My phone was covered with a plastic bag so that the moisture from my breath wouldn't contaminate the mouthpiece. The radiology tech taped a line on the floor 12 feet from where I sat, and anyone who crossed it had to wear disposable booties that they removed before leaving. A bright yellow Hazardous Materials/Radioactive Warning sign was taped to my door, no one could be in my presence for more than 20 minutes a day. That meant the nurses only popped their heads in to deposit a tray of food on the table next to the door, and I wasn't allowed to get my tray until they had left. The techs came in to take my temperature and blood pressure periodically (I wondered if the other patients knew they were sharing medical devices with me).

Twice a day, morning and night, a radiology tech would bring in a geiger counter and a measuring tape. He would take a measurement of the rads I was emitting at 3 and 12 feet away. I filled the intermittent time with taking numerous showers, drinking quarts of water (flushing the toilet 3 times each time I used it), and obssessively washing my hands.

Yes, I was queen of my own tiny kingdom - the corner room of the 6th floor.

keep reading here

These Boots Were Made for Walking

Continued from here

There ought to be a rule for surgeons - no haircuts the day before surgery. Some young rookie lookin' doctor showed up to discuss my surgery with me minutes before I headed back to the OR. Underneath all that mountain man hair, my doc had a baby face - who knew?

I'm not sure which look was worse, mountain man or newbie. Once I got over the shock of that, we went over the particulars again. My nurse could not place an IV in me to save her life - 3 blown veins. So I asked if the anesthetist could do it, he knew his stuff and got it on the first try.

The next thing I knew, I was waking up to the sensation of someone squeezing my feet and pointing my toes - first the right, then the left - back and forth. It was a pair of mechanized booties designed to simulate walking and deter any blood clots (good for your health, but not so much for sleeping). I could not talk, had a throbbing ache at the base of my neck, and felt like I had eaten a pair of wool socks - so scratchy was my throat. I was vaguely aware that it hurt to turn my head. One thing they are quick to do in post-op care is to get you on pain meds. You have only to blink funny and they will bring you a darvocet or some other such pill of peaceful oblivion.

The surgeon told me that the tumor had invaded some nearby neck muscle and he'd had to remove a strap muscle. There were numerous tumors in the left side of my thyroid as well. The cancer had been headed for my voice box next, so it was lucky we got it out when we did (not too sure the kids feel the same about that). The frozen section came back positive for papillary thyroid cancer. He had been able to save my parathyroids, but they monitored my calcium levels to make sure they had not been too traumatized by the surgery.

Because I was under 45 when I was diagnosed the survival rate to 5 years out was 97% - very good news. I stayed in the hospital for about a day and a half and then went home to rest up. In the days that followed, we heard back from pathology that one of seventeen lymph nodes taken was positive for the cancer and the size of my tumor was 1.6 cm in diameter. An appointment was made for us to meet with an oncologist.

One other thing, no one had told me about the wonder that is a surgical drain. I went home with a test tube on the end of a length of catheter tubing poking out of my neck. It was a surgical drain stitched into place. I was to change the tubes and record the fluid amounts and colors as it filled. I have done some pretty grody stuff in my life, but that one is up there near the tippy-top.
I remember feeling good enough to help out in Michelle's class at school, while there a remarkably astute 2nd grader looked up at the dressing on my neck and the tube disappearing into my shirt (where the vac-tube was nestled in my bra) and asked me about it. I told him I had had an operation on my neck. He thought about that a moment and then said, "Lady, they forgot to take some of that stuff out of you." Like I didn't know I had a 12 inch length of catheter tubing hanging out of me. Just for kicks, I pulled out the test tube full of surgery drainage and showed it to him.

Was that evil? Nah, but perhaps a whole lot of misguided fun. I'm blaming the pain killers.

Maybe collecting the ooze from my neck was nasty, but it was nothing compared to the feeling when the surgeon said this might hurt just a bit and he snipped a stitch and pulled that tube out. It must've been buried about 3 inches into my neck and fished around my esophagus. I cannot describe it but I never want to go through that again. Gross.

Usually I heal fine and my scars turn out lovely, but this time was different. The doc likes to look at my neck and tell me he can fix it (um, no thanks - I'm okay with my Franken-neck).

I met with the oncologist - a woman whose typical patient suffers from breast cancer. The first thing she told me was that I had the "good" cancer. This was the third doctor to tell me this and I was not amused. I can appreciate the fact that she sees several women far worse off than I everyday and that I will most likely not die from this cancer - but it really isn't something 'good' to have. Nobody says, "Hey, can I have me some of that? That's the good cancer you know - I'd like double."

Cancer or disease in any form is a major inconvenience and usually it's still painful. Please doctors, don't discount your patients and what they are dealing with.

Okay, off the soapbox now. The oncologist, which is a fancy name for bad a** cancer doctor, told me that I would have to allow my pituitary to realize that I didn't have a thyroid anymore, thereby making it send out signals to tell existing thyroid cells to make more. While it sounds counter intuitive to force the cancer cells to reproduce, it is what lets them know you are ready to nuke the hell out of the cancer.

With thyroid cancer, you don't do chemo and rarely do you do beam radiation, rather you nuke it from the inside out. Literally. But, I'm ahead of myself. Your thyroid is an important part of your body, it takes the iodine found in different foods and converts it to thyroid hormones, and releases them into your bloodstream where they control your metabolism. Every cell in your body needs thyroid hormones to regulate their metabolism. Know what happens when you don't have enough thyroid circulating?

Everything sl o w s d o w n.
Like that. And when you are thyroid deprived and getting prepped for a Radioactive Iodine scan and potential treatment - you must eliminate as much iodine as possible from your diet. Which is actually quite a healthy way to eat, but requires mucho effort on the part of the patient.

Some of the side effects of being hypo (very low) thyroid are slow reflex times, poor concentration and memory, depression, hair loss, extreme fatigue, feeling cold all the time, and last but loveliest - potential tremendous weight gain. It is basically like you are living under water in a very cold swimming pool. Everything moves slowly and you freeze your butt off, and you can't spell to save your life.

keep reading here

The Induction and Arrival of One Miss Ellie

Continued from here

The surgeon's office called and set an appointment for me to be seen the following Wednesday. With any luck, our daughter would be here on September 10th.

We arrived at the hospital early on the morning of the 10th, even though I was only dilated to 1 and hardly effaced, the doctor thought some prostaglandin gel might speed things up.

It didn't, really. By 2 that afternoon, nothing had changed so they started me on Pitocin. The baby was super high (I think she just wasn't ready yet). I walked and walked around the halls, all the while trailing my IV bag of Pit - this was not how I had envisioned this birth.

Every so often they would crank up the dose of pitocin. By 5 p.m. it was as high as it could go, and, though they weren't painful, my contractions were every 2 minutes.

The doctor was going to send me home and have me come back to try again on Monday. He checked me once more and she had finally dropped. He broke my water then - there was no going back. All our children had been born 2 hours after my water had been broken, so I was anticipating holding her very soon.

But it was not to be. I was so sure she'd be born before September 11th, but at midnight I was only dilated to a 4. I asked for an epidural. I'd had it and was in a lot of pain. Alot of unproductive pain. I slept for an hour or two and was awakened by the realization that the epidural was no longer working. The anesthetist was called in because I was suffering so badly. They checked me and I was finally dilated to a 7. This is where I know I would've died had I been a pioneer woman on the plains. Zero childbirth pain threshold.

I paged Sarah, my wonderful friend and doula (I know they are there to help you through the pain, not an epidural, but she had been through this much with us and she deserved to see the birth. Besides, I was only numb from the birth canal down). My uterus was completely awake and irritated with me - who did I think I was having a baby before it was ready? Sarah really helped me through it. It felt like an hour of pushing, but it was really only 5 or 6 pushes and the very large, very purple Ellie had arrived (for about the first 5 minutes she was Sophie, then we decided Ellie suited her better). I held her briefly before the nurse took her and rubbed her briskly. I was never so happy to hear a cry in my life! She had taken over 20 hours to get here, all the others - no more than 6.

I felt so good I wanted to go home later that day. They kept us at the hospital for 48 hours because I had once tested positive for strep B and they just wanted to observe her. Good thing, because her bilirubin levels ended up being very high by the time we left. We brought her back for another test the next day. They were high enough that we had to put her under the bili lights. They basically look like an old Samsonite suitcase turned into a baby tanning bed.

It was all to no avail, the next day her bili levels were so high she had to be admitted to the hospital. They put her under their hi-tech lights. She was so dehydrated it took 6 or more tries to place an IV. It ended up being on her head and believe it or not, at just 2 days old she reached up and pulled it out. It took another 2 hours hours to get one placed on her foot. We were there just over 1 1/2 days. My mom was so helpful through everything. She even stayed overnight at the hospital so I could rest and continue to recover.

We kept up the bili lights at home for an additional three days, and my mom took the night shift. It was just about impossible to keep the blindfold on Ellie, she'd squirm until it came off and we'd have to wrestle it back on.

While she was at the hospital, we had my surgery consult and found out that my type of cancer is very curable, but that my thyroid had to come out. He scheduled me for his next surgery date - three weeks out. When we met the surgeon, he looked somewhat mountain man-ish. His hair was out to here and he may have even had some facial hair, but when he talked about how careful he would be during the surgery to preserve my parathyroids (which are embedded in your thyroid but are responsible for the calcium levels in your body) and my voice, I felt a little more confident in him.

He explained that while I was under, he'd send a frozen section to pathology to confirm the cancer diagnosis and then remove the whole thing if it was positive.

Keep reading here

On Pins and Needles

Continued from here

The pathology tech leaned over her microscope, "We have a winner!"

All I could think was - Thank goodness she had enough of a sample and that needle didn't have to go back in my neck. I wonder what it would've felt like without the numbing agent.

I asked her what her first impression was. She said at first glance it didn't look like the ordinary stuff you'd see in a cyst, but that it didn't jump out and say cancer! either. Also, because it was Friday and just before Labor Day Weekend, I shouldn't expect the results before Tuesday morning.

On the way home, my airway started to feel numb. It was a terrifying experience and I know I obssessed about it - poor hubs, he listened to my anxiety helplessly. It felt like I couldn't swallow or turn my head without some sort of strange sensation, or for that matter, telling my husband all about said strange sensations.

(Earlier that week, he had gone to the doctor with his mom to learn the results of a biopsy she'd had - she was diagnosed with Stage 3 melanoma. So, not a very good week, medically speaking).

His sister and her family come every Labor Day and stay with us - a tradition we really enjoy and a nice distraction from all the waiting. But when I hadn't heard anything by Tuesday afternoon, I called my doctor's office. I was told that the pathologist had not released his report yet, but that it would be available the next day. I called again the next afternoon, all this waiting was killing me - I am not a patient person by nature.

I was at Target exchanging some shoes for Tyler when my doctor's office called me back, and it was my doctor on the line. That was my first clue. He said that the pathologist had just called him personally. That was my second clue. I already knew if he, not the nurse, was calling me that it was cancer. I was wandering around the shoe section slightly dazed, my mind brimming over with questions. The biopsy was positive for Papillary Thyroid Cancer and my thyroid would have to come out. The doctor told me who the pathologist had recommended for the surgery, and to also plan on being induced that weekend. They wanted me to have the baby earlier so I could recover sooner and have surgery within a few weeks.

I managed to hold it together during my conversation with the doctor. Ever practical, I hung up, exchanged the shoes, and called Mr. O as soon as I was in the parking lot. "The doctor just called," - long pause while my throat got a lump in it the size of an egg, "I have cancer." Then I cried.

I was not at all brave, but I think maybe the pregnancy hormone overload had something to do with it. I mean who finds out they have cancer in the shoe section of Target? And then calls their husband from the parking lot? I think cancer is really a face-to-face sort of unveiling thing, not a telephone bomb-dropping deal, and most especially not a voice mail thing.

I cried from the shock of hearing the word cancer applied to me. Cancer is the thing that happens to other people. But it was happening to me, and I felt it was going to rob the spotlight from the baby we had waited for, for so many years. At that moment, I was very upset at the universe and the unfairness of the whole thing, but I guess cancer is never a matter of convenience. No one ever says, "Hey, next year looks good - how about then?"

Mr. O and I talked briefly and agreed we needed more information from the surgeon before making any decisions or telling the kids. I regained my composure. We hung up and I called my mom. I felt like a little girl again, like I had scraped my knee and was going to my mom for comfort and the reassurance that everything was going to be okay - only there's no bandaid and a kiss big enough for cancer.

Of course I cried like a baby. I had no idea what was in store for me or what the outlook was - would I even get to enjoy this baby? I asked her to call and let my siblings know because I was in no shape to speak to anyone. One of my sisters took it almost as hard as I did. That was before we knew anything.

Keep reading here

A Pain in the Neck...

A little over four years ago, I walked my mom out to her car and said goodbye. I stood there on the driveway as she pulled out, one hand resting on my lower back in the classic pregnant woman pose.

I had been feeling a sore throat coming on and massaged just under the back of my jaw assessing whether my glands were getting swollen. Phew, they were just normal size. I dropped my hand, lightly brushing either side of my neck, down to my side. Did I just feel something? I touched my neck again, this time more slowly, deliberately. I stood there looking at the mountains and realizing there was definitely something there - something that didn't belong.

I went inside, into my bathroom and looked in the mirror. Could this have happened overnight? How did I not notice this thing bulging out of my neck? It was about the size of a Globe Grape and about halfway between my chin and collarbone on the right side.

I started googling terms like "neck, cyst, tumor, larynx" and most of the results indicated that it might be something to do with my thyroid. I found a self diagnostic test for a thyroid nodule. It told me to tip my chin back (to push the thyroid out), drink a glass of water, and see if the bump moved when I swallowed (it did). I didn't wait for my husband to get home, I got that glass of water and went back into the bathroom to see for myself.

Do you know how hard it is to drink from a glass, swallow, and look in the mirror at the same time? Try it. First, tip your head back so you can see your neck, then move your eyes so they're looking at the mirror, and then swallow - several times. Not too tough? Maybe you have to be a bit anxious and also nearly 37 weeks pregnant.

I knew this was something I couldn't ignore, and was somewhat comforted by the fact that I had an ob/gyn appointment on Monday (this being a Friday, it was relatively soon). Over the weekend I read everything I could about thyroid diagnosis, it's just the kind of girl I am. And also obsessed over the feel of something foreign on my neck.

On Monday, the doctor examined me and told me the rotten news that I was only 1 cm and about 20% effaced. I told him about the lump on my neck. He felt around, said it was common and most lumps in necks are nothing to worry about, but we ought to order an ultrasound and fine needle biopsy anyway. He was able to schedule it for Friday that same week.

I read up on Fine Needle biopsies and neck ultrasounds - I wanted to know what they were looking for and I wanted to be able to tell if there was something they weren't telling me.

My husband missed work and went with me to the appointment. Usually for an utlrasound of your neck, you lie down on your back - unless you're very pregnant. They had me semi-recline and tip my head way back. I can't tell you how hard it was not to be able to see the screen and try to figure out what was going on. He gave me a sort of play-by-play. Every once in awhile, I would tick off the ultrasound tech and turn my head to see what she was doing. I knew that if the ultrasound looked 'hot' or red instead of blue where the tumor was, that it was more likely to be cancerous. I'm pretty sure I saw red.

A doctor came in and shot some lidocaine into my neck. Whenever someone tells you this will sting a bit - brace yourself, because it usually means it will burn like hell. He didn't wait very long before he had me tip my head to the left. He took out a needle (I had to peek, and wish I hadn't). The pathology tech wheeled her cart into the room and told me she was going to take a look at the sample the doctor pulled out to make sure they had enough 'material' for a diagnosis - that way I wouldn't have to come back.

Pretty much the numbing shot was pointless. I felt everything he did. There is nothing fine about a Fine Needle Biopsy. The needly is long and sturdy. And it is not one simple little poke. It seriously felt like he was fishing in there. He told me he was trying to get samples from all over the nodule. He would pull back on the syringe, and then jab some more into my neck. At the same time, the tech was using the ultrasound wand so he could have a guide. About four times it felt like he had stabbed my larynx.

I am not normally a claustrophobic person, but I was starting to panic. It really hurt and each time he hit my airway it really freaked me out. After about ten different jabs, he handed the needle over to the pathology tech. I was hoping, praying that she had enough 'material' for a diagnosis, because I did not want that needle back in my neck.

Keep reading here

Good News

Ty's tumor has significantly decreased in size as compared to his last scan. Wahoo!

He is retaining a fair amount of fluid in his stomach and abdomen so we are scheduling an ultrasound to rule out any blood clots. Also, I found out that he has to have an Echocardiogram every year for the rest of his life due to the chemo treatment he received (which can cause heart damage at any point). Anyway, it's nice to have some great news.

Also, water pill update: 10 lb fluid loss. Who knew?

Three Whole Weeks

Catching up on homework.

Solitary Confinement. I did it. For THREE WHOLE WEEKS. Sort of.

After my taking my radioactive dose in an effort cure my thyroid cancer, I was put in isolation. Back in those days (four years ago) they still had you stay at the hospital for the the first three days.

I was placed in a corner room on the top floor with the rooms next to me left vacant since radio waves are no respecter of walls (I always wondered about the poor soul in the room beneath me). A line was taped off around the door that I was not allowed to pass, a box of disposable blue booties and a chair sat waiting for any visitors, nurses, or doctors. No one was allowed to be in my presence for more than a total of 20 minutes per day. It was rather lonely.

The phone receiver was covered in plastic -protected from my radioactive breath droplets- they'd had to put too many in long term storage due to high readings on the Geiger counter so it was standard operating procedure now.

All food was brought to my room in disposable containers and had to remain in my room for the entire stay until the Hazard Crew performed a room clean-up. I tried to eat everything, but the radiation made me nauseous. As you can imagine, it was rather smelly in there and that did not help my nausea. The nurses kept shutting my door although it made no difference. Somehow that closed door was as good as putting me on Mars or the deepest, darkest smallest cave. The two times I've done this treatment at the hospital are the only times I've felt any form of claustrophobia and I've been in far more confining quarters (can you say Brain/thoracic MRI?). It was stifling and some of my anxiety came back every time the door was closed. I would sneak over whenever they left and open it just a smidge.

I was encouraged to drink as many fluids as possible and shower several times a day (to aid in the flushing of all that radioactivity out of my system). Because I had an infant (who simply by necessity would require close proximity to my neck), my doctors were overly cautious in their instructions for my post-hospital isolation. I should not be in my own house and should not even touch my baby until the Geiger counter numbers were in a certain zone.

My parents generously offered me the spare bedroom in the upstairs corner of their home, my mom volunteered to care for Ellie, and Mr. O and my aunt held down the fort back home. Even at my parent's home my food was set just inside the door and I waited until they left to go pick it up.

I brought some needlework to keep me busy at the hospital and basically spent my time catching up on TV. It was lonely. All my belongings were scanned before I left to ensure they weren't emitting dangerous levels of radioactivity.

I was not allowed to drive myself home, so my dad picked me up and I was told to sit as far away from him as possible. We stopped for a Steak-n-Everything sandwich on the way home (I know I was radioactive - we sat in the far corner of the restaurant). It was the first real food I'd had in 6 weeks and the pepper in it tasted wonderful. It wasn't until they brought me a pork salad from Cafe Rio the next day that I realized my taste buds were gone. Completely killed. Then my salivary glands began to swell. The chipmunk look does wonders for one's self esteem. NOT.

I was to spend another two and a half weeks in that corner room, going in for periodic Geiger counter measurements. My mom would bring Ellie to the bottom of the stairs and I would gaze down at her longingly, looking forward to when I could hold her again.

I filled my days with working on this quilt for my sister (and then it went into storage for 40 days, just in case)

All the floral blocks are hand appliqued. We hadn't had cable for a few years,so I sat there stitching and watching reruns of Clean House on the Style Network and TLC's What Not to Wear. I also spent some time on the phone interviewing my Grandma B about some old family stories. (Another post to come on a really scandalous episode from my way-back ancestors' past). I wrote page after page in my journal letting the conversations in my head spill out on to paper.

So what I am trying to say by all of this, is that if I had something I could do to keep my hands busy (as well as cable TV, a journal, and Hershey Milk Chocolate Nuggets with Almonds - if I'm being perfectly honest here) I'd be able to survive, but the loneliness was something I wouldn't wish on anyone.

In fact, I need to see if there is someone whose loneliness I can do something to alleviate.

Oh no, I've said too much - I haven't said enough

I'd like to clarify something - I own my inactivity, my stalemate with Heaven. It is "me" centered, and it is largely affected by the way I perceive things. Knowing it and owning it might just be the first step in conquering it. This is the anatomy of my inactivity.

Three years ago, I called and asked my husband to come home from work and take the kids somewhere, anywhere. I had been preparing for my second thyroid scan and it had really done a number on me. I did not have the mental or physical energy to think or care about another living soul, let alone me. When he arrived the house seemed oppressive to me. My soul suddenly became claustrophobic, and all I could think was that I needed to get out, to clear my head.

I remember telling my husband I just needed to leave. And then I added quietly, "I don't know if I'm coming back."

Such is the effect of no thyroid in your system. I loathe prepping for that scan more than anything because the effects seem to last forever. It takes 6 weeks of no meds before you can have your scan and then it takes the drugs another 6 weeks to build back up in your system. It is essentially three months of hell. For everyone.

Now you know why I'm waiting another 2 years before I subject us all to that special kind of torture again.

Back to that particular day, I grabbed my husband's keys (because hello! better gas mileage, and I'm nothing if not practical - even in depression) and my purse. As I backed out of the driveway watching my husband stand in the doorway, I heaved a sigh from my toes and put the car in drive not really knowing if I would come back.

I made it about a mile down the road before the dam burst and the sobs wracked out of me. At this time I was still on speaking terms with my Maker. I pulled over and leaning forward peering up to the heavens through the glass of my husband's windshield, I told Him, "I cannot do this. This, THIS is too hard! And I think I know hard." I collapsed against the steering wheel, my body trembling with the force of my admission. I sat there holding on that wheel for dear life and cried until the tears couldn't come any more. And then I drove aimlessly for another three hours.

Somehow depression tricks you into thinking that your problems are heavier than the heaviest burden, that no one in the history of time has ever felt the weight of your sadness to this magnitude, because how could they even begin to bear it if they had? We all have hard things in our life, at least I choose to believe we do - it's just that some people's hard things are more obvious than other's.

Some of our hard things during those dark days: I'd been through one bout of my own cancer, had a bonus baby, and my son had been through one major surgery a year over the past 4 years. Going through this cancer screening put me over the edge, emotionally and physically. And so, I told God that He had overestimated my abilities and that He couldn't possibly make me do this. It just wasn't fair, you see?

I don't think He bought it, because one week later my son underwent a critical operation and was diagnosed with a rare, aggressive tumor. One that had the potential to be life-threatening. I still had two more weeks of prepping for my scan and I badly wanted to back out so I'd have my wits about me. But somehow, I knew. I knew my cancer was back. The scan was just a formality that confirmed my suspicions.

These were the darkest days I've ever had. I couldn't help but feel I'd brought it all on by opening my big mouth, and bam! right there I added guilt to the avalanche of depression. And then Ty had two major infections that could've claimed him, taken him back home. And bam! right there I added fear.

That was the start of my decline. The fact that our neighborhood felt powerless to know what to do and so did not visit him (except for a few people) or feel comfortable interacting with him was just the icing on the cake. It was when my choice was made.

I was transported back to that day in the car, the day that I actually shook my fist at God and said, "I can't. I CAN'T! I cannot do this hard thing." And instead of being struck with the realization that - with God - I could, I really COULD! I chose to feel the full weight of my burden, to carry it myself, thankyouverymuch. So I turned inward, and let the anger come. And Anger was more than happy to show God the door.

Since then Ty has had two more major surgeries and is now facing a possible third or even fourth surgery. For now there doesn't seem to be an end in sight to visibility of our hard things. The bar has been raised, and the question remains - will I rise to meet it?

The ironic thing is, prior to this turn of events our family had been at our spiritual peak. We were closer than we'd ever been and the loving Spirit in our home was palpable. Then it was as if we were thrown a cosmic Pop Quiz and I was found wanting. I flunked it. Quite completely.

So now that you know how I've come down this path, know that I'm considering doing a little retracing of my steps. I'm not quite sure I'm up to the task or that I'm humble enough to be successful but sharing my experience is my way of owning up to it. Here's to giving it a shot.

I truly admire those who face life-changing adversity with grace (especially Nie). They give me perspective and fill me with hope that it can be done.

Update on Ty

Can be found here. Before we go through any of that, we need to schedule his CT follow-up on his tumor.

Keep those plates a spinnin'

Here we are, the time of year I should be doing my cancer scan - and as one person puts it, my cancerversary. I've already decided not to do another scan until sometime next summer. Sometimes I think I can feel the pressure building back up, pressing against my vocal chords and making it interesting to swallow. I feel the familiar pulsing, a pain like a spike being driven into the railroad track at the base of my throat. And I choose to ignore it because, hey! it's my railroad track.

I admit to having an overactive imagination and reassure myself with the thought that very rarely do people actually die from this cancer so it's okay if I want to take it on - on my own terms. I'm doing my scan when it's warmer and I don't have to think so much. No more meeting with teachers with only half my brain cells at my disposal, it's bad enough when I'm working at full capacity.

In other news, Ty is communicating more purposely than ever. I suppose it's a silver lining on the cloud of his latest medical conundrum. At school, he has a computer program he can use to *tell* us things. It's not perfect, he can only choose from the options that have been programmed for him, but lately he is choosing: "I want to tell you something," then clicking on "I want to tell you how I feel," once there he telling us repeatedly "I'm hurting" or "I'm tired" and he is signing "finished" during every activity but eating and listening to music. I think the next thing I need to program in is the option, "I want to go home."

Normally, he loves school and the interactions with his peers, but this latest hip problem must be a lot harder on him than I thought. He is living on muscle relaxants and pain meds, dozing on and off through his days and having restless nights. I hope this infection clears up and he can have
surgery before Thanksgiving.

I am trying to get into scout mom mode - it's a foreign language. I can tell anything you want to know about cancer/chemo labs or insurance processing, but scouting? it's Greek to me. Spielberg and I are learning it together. I know the window of opportunity for scouting is a short one, and we are hoping to squeak through. Any ideas here for a novice? How to be organized and motivating without being, ahem, heavy-handed?

How do you keep your plates spinning?

Lookie there!

Over there in my sidebar. You're helping Serenity! You're awesome! Please, please if you can spare it, donate and/or pray. $5, $10, $50, $100, $500, $1000 - the sky's the limit. Heaven knows their bills will reach the sky; chemotherapy and no insurance do not a good combination make. And donating? It makes for good karma, and you need that - you really do.

It was only a year ago that we were finishing up Ty's chemo, he has his one year follow-up in 2 weeks and I'm positive it will bring good news. In fact, the doctor may even ask us what on earth we are doing there, wasting his time. I can still see a small bulge where the tumor lies beneath the skin on his stomach, but it is so small and so faint that I think we can safely close this chapter of his life. No more chemo, ever.

He does need one more hip surgery, but it should be the surgery to end all surgeries. They will build him a hip shelf, and remove the hardware in his hip as well as his chemo port.

I think, this summer, we are going to relax and enjoy ourselves. Have a lovely weekend.

So, where was I?

Oh yeah, on vacation. Although taking a 2 year old along does not qualify officially in the parent handbook as 'vacationing'. We all had a lovely time (except for flying there and back).

We traveled on JetBlue (where if you're a single female and your flight attendant is male, you may just get extra snacks - I'm just saying) so at least everyone else had tv or radio to listen to instead of my darling toddler.

Our condo had a great location - 40 feet to the water and 40 feet to the Amtrak rails (a little surf, a little choo!choo!) Even though the view was amazing, we won't be renting there again. One bathroom for 10 people is not enough, especially when said bathroom door sticks fast as soon as it's halfway open - you had to plan ahead to pee with all the showers and door sticking going on.

Not everyone was having as good a time as we were - While we were gone, my cousin's daughter was diagnosed with A.L.L. Thank heavens there is an 85% survival rate to 5 years, but it will require two and a half years of treatment.

I have placed a Chip-In Widget in my sidebar, we are trying to help raise funds for all the medical costs they are incurring (they do not have insurance and are between jobs at the moment. (Ty's 5 day stays in the ICS unit for chemo averaged around $40,000 each!) Any amount is helpful, $5, $10 whatever you feel you can do to help out (even if it's praying for her). Thank you.