Hi dear friends and all those kind souls who have expressed concern, sent donations. Thank you for your loving, kind, caring emails that mean so much to me.

I just got out of the hospital, was in the emergency ward and intensive care at New York Presbyterian Hospital for a couple of days for something that seems so trivial but was life threatening, lack of calcium. Had a hypoparathyroid/hypocalcemia crash
http://www.hpth.org/index.cfm?pv=AV&DType=HTML&AID=16
due to a postoperative complication, hypoparathyroidism.
http://parathyroid.com/hypoparathyroidism.htm

After surgery 6 weeks ago I felt like death warmed over for a week, then felt much better for a couple of weeks, then, over the last month, plummeted day by day into increasing weakness, fatigue, aching, depression, all over physical distress and feeling cold all the time.

Gradually the symptoms became all over muscle tension, chronic nausea, hurting salivary glands, tingling hands and feet, aching joints, feeling of blurred thinking. I figured it was my body adjusting to the lack of thyroid hormone and didn’t know it was because my parathyroid wasn’t processing calcium.

Calcium needs to be in a narrow range, 8.5 to 10.2. http://www.nlm.nih.gov/medlineplus/ency/article/003477.htm
My blood calcium level was critically low, 5.7.

Had to go on intravenous calcium in intensive care until the calcium level was 7. 5 and the danger of heart attack and seizure was over. Interestingly the blood calcium level impacts one’s thinking too. I haven’t felt clear thinking at all this last month.

Apparently, when my thyroid was taken out, my parathyroid gland, which is just behind the thyroid, stopped functioning and hasn’t been back in action sufficiently yet. Two of the four tiny parathyroid glands were damaged during the thyroid surgery and were implanted into muscle.

Finally, the lack of blood calcium symptoms were so severe my hands stopped being able to type. I went for a blood test and on Saturday the doctor’s associate called quite agitated and told me to hurry into the emergency ward, which I did. Am feeling a bit better now, still weak. I can tell I still have symptoms of lack of calcium but now how know to monitor that better.

The three endocrinologists I’ve seen have all been dismissive when I expressed feeling discomfort. I have to find a better endocrinologist, which hasn’t been easy while feeling so weak and confused.

I also learned casually from the second endocrinologist that the surgeon’s report indicated I’d had an inflamed thyroid for years. why the surgeon didn’t inform me of this I don’t know. But, reading up on chronic thyroiditis, usually called Hashimoto’s, I’ve had the symptoms
http://www.womenshealth.gov/faq/hashimoto.htm
for 30+ years: fatigue, depression, sensitivity to cold, weight gain, forgetfulness, muscle weakness, puffy face, constipation, muscle cramps, heavy and painful menstrual flow, ovarian cyst. So some health issues made sense for the first time.

In the meantime, I’m on the low iodine diet
http://www.thyca.org/rai.htm#diet
preparing for the Radioactive Iodine (RAI) treatment
http://www.endocrinologist.com/Radioactive.html
process on July 8th, 9th, 10th and 17th,
which includes 2 days of injections of a substance called thyrogen,
http://www.thyrogen.com/global/p_hp_homepage.asp
which causes a greater uptake of the radioactive iodine, then the radiation in the form of a pill or drinkable liquid, then, a week later, a whole body scan (WBS) to see if there are metastases.

I will receive a fairly large dose of radiation for the treatment of the tall cell papillary cancer, 200 millicuries. A more typical dose is 30 millicuries. Will need to be in isolation in my apartment then, no access to the computer for a week or two, which might break if I get near it.

Side effects of the radioactive iodine are likely to be:
badly functioning or painful salivary glands
possibly permanent loss of taste
metallic taste in my mouth
dry mouth
sore throat
neck pain. Radioactive iodine treatment can make one’s neck swell up or hurt
nausea or vomiting
constipation or diarrhea
fatigue

There have been some exceptionally useful, practically informative or emotionally supportive websites, which I’d like to include here for others who might need them.
http://del.icio.us/nickyskye/thyroid
MetaFilter’s Hildegarde’s site was/is particularly helpful as a fellow survivor appreciating her articulateness about a similar situation in her own life.
http://www.mazar.ca/

During the last couple of months an old friend and much loved 79 year old neighbor, Vanya, has been seriously ill with geriatric dementia and heart disease. Well meaning friends tried to force her into a nursing home, which impacted her health terribly.She and I have both been in New York Presbyterian Hospital at the same time. I’ve been caretaking her as best as I could and helped her out of the nursing home. This last week I thought she wouldn’t survive her illness but she is on the mend now and coming back to her apartment.

My nice roomie student from Singapore is returning home in a couple of weeks and I found a nice Korean student.

So that’s the news. I’m so sorry I haven’t been a better communicator recently, I haven’t felt up to it. Thanks again with all my heart for your loving support, it means everything to me. Thank you.

the good news and the bad news

the good news is that the lymph gland is benign, not lymphoma, YAYYY!!!

the bad news is that the thyroid cancer is an aggressive variant, "tall cell" papillary thyroid cancer. There's a greater chance of lymph and bone metastases and I will need to receive a higher dose of radioactive iodine in 5 weeks and be monitored regularly with ultrasound and nuclear scans and possibly external beam radiation. The good news is that the tumor was small, 1.2 centimeters.

My friend, Nan has researched clinical trials for me and am looking up the results of her work on the clinical trials at the moment. After hearing the pathology report over the phone last night from the doctor I had a couple of stiff drinks (rum and limeade) and overate some delicious Mexican black bean salad with my upstairs neighbors. Got a back massage too. YAYY massages.

I would deeply appreciate and be grateful for the help of any MeFite, who might help me research and find any doctor who is familiar with this type of cancer, tall cell papillary thyroid cancer.

Just left a message on a Cancer Treatment Centers of America message forum,

http://www.cancercompass.com/message-board/message/all,23483,0.htm#msg170429

What a huge relief to find this message board. I was also beginning to feel there was nobody with whom to talk to about this. Hi, I'm Victoria, 54 years old, a New Yorker. After surviving stage 3A uterine cancer and stage 1C fallopian tube cancer, I was diagnosed with tall cell cancer yesterday, an "aggressive variant of papillary thyroid cancer". Had my thyroid and surrounding lymph glands removed April 22 2008 at New York Presbyterian Hospital.The superbly skilled and friendly surgeon, Dr. David Kutler, said the 1.2 cm tumor, which was wrapped around my laryngeal nerve was "sticky" and I suppose that was why the surgery took 8 hours, rather than the 3 hours that were expected and that with the endocrinologist I'd be taking a larger dose of Radioactive Iodine than was previously expected and then be closely monitored with ultrasound and nuclear scans for metastases, which might occur in the lymph glands, lungs, bone or breasts. Possible external beam radiation. I was told by Dr. Kutler that chemotherapy for this cancer is only given for palliative reasons. Does that mean this cancer can only be treated with radiation or surgery?

I'm worried there seem to be no doctors on the web who are familiar with this cancer. All the info out there says bluntly and negatively that "the prognosis is poor". I feel like fighting that. How are the metastases treated? Any clinical trials? I called The New York Thyroid Center and see if they have any answers.

NewYork-Presbyterian Hospital/Columbia
Irving Pavilion Room 612
161 Fort Washington Avenue
New York, NY 10032

Phone: 212-305-0444
Fax: 212-305-0445

Left a message with William B. Inabnet, MD, assistant, Leslie.

All I know now is that "he doesn't take any insurance", yikes, but has "a colleague who does take insurance".

Will get back to the other members here immediately if I find any information about a specialist or anyone knowledgeable and would so appreciate hearing any info from others.

I suspect I had hypothyroid issues for many years as now, taking levothyroxine for 1 week now post op I feel so energized and in such good spirits.

Am trying to find *any* info about this tall cell variant:

http://www.thyroid-cancer.net/resources/answers.php3

http://www.ncbi.nlm.nih.gov/pubmed/11523623

http://arpa.allenpress.com/arpaonline/?request=get-document&doi=10.1043/0003-9985(2001)125<0541:CTCCAH>2.0.CO;2

http://www.joplink.net/prev/200607/05.html

(just wrote the author of that article, Ali A Siddiqui, to see if he has any information).

There seems to be a lot to learn, like about thyroglobulin levels in relation to metastases of this cancer.

Short version:

Had surgery, am getting better, still waiting for biopsy results,stitches out in 2 days.

Long version:
Had surgery April 22. 10:30 am until 8 pm. was there until Thursday April 24 noon.

Thanks for writing. It's so good to be alive. And so good to know my friends cared enough about me to save my life, literally, helping me get through this. It's profoundly meaningful, inspiring and hope giving. I haven't felt such hope in a very long time, too long to remember.

Am still waiting for biopsy pathology results for the lymph gland that was removed in the back of the neck. Am still anxious about that and until I hear the actual lab results am trying to prepare psychologically for the result if it is not favorable.

Whatever the pathology result for the lymph gland in back I will need to have radiation treatment for the thyroid cancer in 5 weeks time. This is radioactive iodine, ingested and be in self-imposed isolation to protect others from the radiation in my body for a week. In the month prior to the radiation and after I will need to go on the special diet to deprive my body of an iota of iodine, so that when I take the radiated iodine it will saturate every cell, to the marrow of my bones, where a metastases might be lurking.

During the radiation, that will be another time of fatigue, nausea and additional bone/osteoporosis side effects.


Details of hospital stay and post op:

Still in pain in shoulders from being in surgery position for 8 hours, surgery staff pulled muscles in both my shoulders in keeping me in the
surgery position, extremely painful. Needing morphine for 3 days and lidocaine patches on both shoulders, heating pad and unable to sleep but only able to lie in bed in intense pain for 3 days.

The good news, what was supposed to be a 3 hour surgery but ended up being 8, the surgeon saved my voice box. The half inch papillary thyroid tumor was wrapped around the laryngeal nerve. Surrounding lymph glands were also removed to be biopsied. The extensiveness, staging, of the cancer, is not known yet.

Of the 4 parathyroid glands behind the thyroid 2 had to be cut from their original organ and replanted into muscle tissue, where they will
supposedly grow again. This is crucial since after a thyroid removal the parathyroid gland goes into shock and stops the body's ability to process calcium, which puts the body in severe danger of heart attack. Have to take massive amounts of calcium all day and all night or around lips and face, limbs go numbish. Taking 1250 units of calcium 3 times a day and Tums several times between that.

Am still weak, groggy, little energy. Hard to sleep because the many negative anesthesia side-effects still, painful breathing, mental
numbness and going to the bathroom once an hour, every hour 24 hours a day and night. Fuzzy from lack of continuous sleep. Bloated, nausea, headache, limp. After surgery, that night, I vomited a bunch of times, which wasn't fun.The rubber breathing tube during surgery causes trauma in the throat, I coughed blood clots for 2 days and felt periodically post op as if I would suffocate, unable to breathe the air I needed or die from heart attack at any minute.

Thyroid controls every cell in the body, now not having a thyroid and waiting for the artificial thyroid replacement to kick in, which I think it has.

Hard to speak or function much still.

For days after the surgery the impact of the anesthesia is that I felt like death warmed over. As if I were in the land of the dead, a zombie without will to live and might be stuck there. It was frightening and bewildering. I felt like a puppet with the strings cut, almost immobile.


Bottom line:
Am ok, coming along. Getting through the post-op ordeal slowly. My 54 year old, overweight body was in bad shape from surviving two other primary cancers, late stage uterine and fallopian cancer and worse, the chemotherapy, which damaged my entire system. Since I was likely hypothyroid to some degree or another for a very long time it's a relief to think I may now be given the chemicals/thyroid replacement to have more energy, more vitality.

I hope the lymph gland in the back of my neck is not metastases or lymphoma. I hope the thyroid cancer is successfully treated with the upcoming radiation. Am waiting for the pathology reports this Wednesday.

This Wednesday will have the stitches ("fishing line") removed in the front and back of my neck by the surgeon, Dr. Kutler (who gets teased about his name). It will hurt. Am prepared for that. The incision is superbly thin, only a slender, translucent piece of surgical tape over each of the incisions. I think he is a gifted surgeon.

If I'm strong enough after that, and not disheartened by the pathology reports I will go to work for 4 hours at the Korean job with the medical insurance. If not, then will try to work on Friday.

On Thursday I see the endocrinologist, Dr. Baker, a perky, amiable guy, who I like and get put on the low iodine diet to prep for the radiation treatment.

At this moment am expecting to be able to begin having a regular life again in 2 months and in the meantime will dedicate every day to getting fitter, more mobile, stronger, healthier and efficiently functioning again.

Am hopeful and glad.

Hey ya'll,

Here's a note from a friend of Nicky's :

I'm happy to report that Victoria's surgery was completely successful and the doctor expects that she will make a full recovery from the thyroid cancer.

I accompanied Victoria home from the hospital yesterday afternoon and she is resting comfortably in her apartment.

She's currently too weak to spend much time on the phone or online with email but I will pass along your concern and good wishes.

She still has to be treated with the radioactive iodine in a few weeks. She'll probably be up to answering email and receiving phone calls in a few days.

And thanks so much for all of your help and support.

So if ya'll give Nicky a few days to recover, that would be great. Sending emails would probably be best, she'll get those in time, but lets skip the phone calls 'till she's up and about.

Hey, just got off the phone with Nicky. It was very brief, just a check to see if she was ok. She's weak, but as she said "Hey, I'm alive" so that's good.

The previous issue with her being not being found in the hospital system seems to be over. She can be reached at (212) 746-5000 , but maybe wait 'till Wednesday evening to give her a bit more time to rest.

Dear friends,
The day for surgery has arrived. Because of the delay due to the flu, which was tenacious, I had to take the pre-op clearance tests over again. Was limp with fatigue. Your donations have been a tremendous boon this last month. What a huge relief to be able to take care of my basic needs with less stress and worry. Thank you and thank you a thousand times once again.

Surgery at 7am10:15am for 3 hours if all goes well and a couple of hours approx to wake up from the anesthesia. Thyroid and surrounding lymph glands to be removed and biopsied to see the extent of the thyroid cancer. Lymph gland in back of neck, which has been lumpy for half a year, removed to be biopsied for metastases and see if it's lymphoma or any other cancer. Results back in abut a week. An anxious wait.

The anesthesia, Fentanyl, changes one's perception to smell in the first few days after surgery, so no flowers please and if anyone visits, please don't wear any perfume or cologne.

A fellow MeFite has said she will visit Tuesday night.

Don't know how long I'll be in hospital, could be 24 hours, could be a few days. Probably will be hoarse and unable to speak much. Will take a cab home and walk up the 4 flights of stairs.

If you feel like a visit, call this number and ask for Victoria Barlow, they'll give you my room number.

NewYork-Presbyterian/Weill Cornell
Tel: (212) 746-5000
edit note: the number appears to be wrong, looking for the correct one.Never mind, the number is working now

Thanks so much again for your kind help and loving good wishes.

Edited to reflect time change of surgery from 7am to 10:15am

Please be aware that you can now leave comments within a blog entry. In the interests of keeping things simple and easy to find, we’ll limit the ability to post comments to the most recent entry by Nicky. As new entries are made, the older entries will lose their commenting ability.

Also see the note of the sidebar for various ways to receive updates on Nicky’s progress.

Hi dearest Mefites and friends who have reached out and donated,
Thank you so much for your amazing kindess, generosity and many good wishes. An especial thanks to Matt for allowing my request on the Projects page. It is *really* appreciated and, of course, to Brandon, who has helped me consistently with his gentle encouragement, empathy, steadiness and human decency over the last four months.

There are so many thank yous I owe to everybody who donated. I would like to write each one personally but may be a little slow in achieving that. Please be patient with me.

If anyone who has donated would like to be assured that I have made an honest request, I will be happy to scan my medical report, give you the names of my oncologists, offer my name, home address, phone number. I live in a tiny midtown apartment, but if anyone would like to visit or call, you’re welcome.

These last two weeks I’ve been recovering from this dang flu, hacking cough, fever. Since I won’t be able to cough after the incision is made on my neck, the doctor has delayed the surgery date until Aprill 22nd.

Because of the thyroid cancer, I’m struggling with symptoms of hypothyroid, intense fatigue, incredibly sleepy, always cold, fingernails extremely fragile. There is usually a window in each day, between a half an hour and an hour when I have energy to write, talk, function, do chores, go to the various doctors appointments, hold down my medical insurance job.

That and the fear of the upcoming surgery, radiation treatment and a life of artificial thyroid replacement has at times felt overwhelming after just getting on my feet from the previous cancer diagnoses.

That said, the donations people made took the burden of fearing homelessness from my shoulders. I was desperate and depressed about the situation. Now, for the next few months, until I’m fully functioning after the radiation, I’ll have a roof over my head, be able to afford the co-payments for doctors’ visits, buy necessary fruits and veggies necessary for the low-iodine diet, get supplements etc. It’s just such a huge relief and I feel profoundly grateful.

It took a couple of weeks for the feeling of relief to sink in. Truly, the kindness shown by fellow MeFites and a few of my classmates in school many years ago has been transformative and given me such hope and joy. You are amazing.

Thank you with all my heart.

Love and hugs,
Nicky/Victoria

So sorry not to have replied earlier, I’ve been down with the flu that’s been going around this week. My profound and sincere thanks to each person who has given.

Dear friends,
After several years of successfully fighting and beating late stage uterine and ovarian cancer, I recently returned for tests and have now been told that I have papillary thyroid cancer. Unfortunately, having been weakened by the cancers, the chemo and radiation, I'm in an extremely difficult financial situation, am single and have no family assistance.

On March 27th, the thyroid will be removed, along with the lymph gland on the back of my neck. Then there will be radioactive iodine for treatment, one dose, mid-May. I will need to take both thyroid and osteoporosis pills (the radioactive iodine basically ruins one's bones) every day for the rest of my life.

I would deeply appreciate any financial assistance or food delivery that you can help me with as I will not be able to function normally for several months after the treatments. I live in a 4th floor walk-up and need to be on a special diet until mid June.

If you donate food to be delivered, here are a couple of options for a gift certificate in my name, Victoria Barlow: Food Emporium, on 49th Street, gift cards are available in $10, $25 and $50 denominations; customer service 1-866-44-Fresh (1-800-443-7374) or the Amish Market, gift cards available in increments of $25; 731 Ninth Avenue, 212-245-2360.

Please click on the link to the right if you are able to donate. You can make your contribution anonymously if you like, truly any amount would be appreciated. Thank you.

Sincerely and with love,
Victoria /Nicky