Is 50 the new 30? Sometimes it feels like the new 80.

In the last two weeks, I have not seen any more doctors but I've made a trip to the hospital for further blood work and blood cultures. I am still waiting on the culture results but my white count went from 12,000 back up to 15,000 since Dec. 7th. Hopefully they can pinpoint the source of the infection soon, as I've been feeling flu-like for two months now. I should know in the next few days whether there is an infection in the blood stream.

In addition, I am scheduled for another round of MRIs to look at my brain and cervical spine. My doctor seems to feel that possibly something is laying dormant since my last major surgery and all the infections that followed. If those scans provide no answers, he would like to look at my kidney and liver to see if there is any sign of metastasis. My internist feels that you can get temperatures and unusual labs when you have cancer either growing or moving in your body. Say your prayers and cross your fingers this is not the case. This is another reason I am opting to wait until after the holidays to get the MRI scans down. I'll get them done on Dec. 30 and I should know shortly after the new year the results.

I'm still waiting for an appointment to meet with the transplant coordinator at Northwestern. I spoke with my brother Jeff, who has also received a kidney transplant. Four years ago when he met with their transplant team, he was told you cannot go directly to a transplant process. You must do at least a month of dialysis. He searched four other hospitals around the country who also told him the same. He finally ended up doing his transplant in Colorado, where they would do it with a pre-arranged donor. Hopefully things have changed in the last four years as my doctor doesn't feel I can tolerate the dialysis process.

We'll also plan to have my skin cancer checked, in case that could possibly cause white blood counts to increase and the symptoms I am experiencing. Back to the blood results of Dec. 7, when my white count had gone from 21,000 down to 12,000, I was also found to be deficient in Vitamin D. The idea that the pituitary gland was causing the problem was proven wrong. A Vitamin D deficiency can cause you to feel weak, achy, have difficulty with concentrating, cause headaches, and basically seasonal affective disorder systems. Living in the Midwest in the winter of doom and gloom, I am now taking a Vitamin D supplement.

On a happier (?) note, I recently celebrated my 50th (half-century mark) birthday and I am feeling very old. Celebrating, on the other hand, has been great fun and I can really get used to that lifestyle. Prior to my birthday, I met with 12 of my sorority sisters at Maggiano's and we went into an Italian food coma. The dinner, drinks and great company made for a wonderful evening. Thank you, girls, for all my wonderful gifts. I wear the necklace almost daily and get compliments all the time.

In addition, I was thoroughly surprised by a large group of neighbors and friends at our supposed holiday book club-turned surprise Happy 50th. Another great evening of my favorite snacketizers, drinks, and a delicious assortment of cake pops. Everyone shared their thoughts, jokes, and sayings on aging (e.g. "I'd rather give up sex than lose my glasses") and games you play when you get old (e.g. "Hide and go pee"). Again I was treated to many wonderful gifts, jewelry and gift cards, but most importantly, the love I felt from all my close friends was so nice. A big thank you to Suzanne and her helpers Angela, Karin, Brenda and Corrine.

It has been great seeing everybody at all of our holiday parties and gatherings this holiday season. I just found out that my friend Sheila, who I am dictating this to currently, will be in town for a few days. In addition to getting together with her, on Christmas Eve we'll be going to church and then starting our Christmas tradition. It's 24+ hours spent with the same group of people, beginning with Christmas Eve when we have a formal dinner with my cousins and my aunts and uncles. We do a gift exchange with names we have drawn for the kids and basically everybody visits and gets excited for Santa's arrival. We leave about 10:00, set up our own Christmas, go to bed, wake up at the crack of dawn, open gifts, and then in the early afternoon we load up our favorite toys and dress casual for yet another day of drinking, games, and fun with our relatives. Crazy enough, last year, due to the snow, it turned into a three-day ordeal. We love our family, especially with the wine and spirits.

We can be thankful this year that my Aunt Winnie is now cancer-free as she completed her last dose of radiation one week ago. Now we have to pray that my Aunt Mary will get relief from her chronic low back pain and sciatica.

As for New Years Eve, we are going to our neighbors Ron and Angela's for their annual Eat, Drink, Be Merry and Play Games party in our subdivision. No kids (he he). It should be fun. Hopefully we're headed in the right direction for a more promising new year.

My Delta Zeta friend, DiTy and her extremely sensitive, thoughtful, caring husband Jim, with support from Lori P., Jeryl and Julie F., Carrie, Patty and Nancy, Ellen, Jane, Missy and Denise (the birthday group), presented me with the gift of GiveForward. It is a remarkable website (http://www.giveforward.com/wecareforkim) where people I know, as well as people I've never met, have shared messages, their generous donations, and prayers toward my family and I. It is the most overwhelming experience I've ever felt, as I have been part of a fundraisers in the past, but this is totally different. This is a truly wonderful group of people wanting to do good for others in the world. It is amazing and brings me to tears when I read their notes and see the generous amounts that we have already achieved in just 10 days time.

In addition, it was brought to my attention last night by Jim that the GiveForward organization has chosen my blog and story as their favorite this season. They have decided to take money that they have raised (remember, they are a company that makes 7% profit by people who do fundraisers) and make our Christmas holiday more special. I'm not sure what they plan to send but Jim said they were hoping to send gifts for my two kids. How touching is that? I didn't think companies did this kind of stuff.

I really do appreciate everything that everybody has done. I know everybody is very busy at this time of year, and in this tough economy I am so touched that you have chosen me to receive your blessings. THANK YOU and GOD BLESS YOU ALL. May you all have a Merry Christmas and Happy New Year.

p.s. I still hope to send Christmas cards at some point. I'm off now to get the rest of my gifts wrapped.

"It's better to look good than to feel good."

Hope you all had a great summer and are ready for a nice, hopefully mild winter. I swore I would never wait this long before blogging, and here I am, doing it again. So, hopefully after today this will never happen again. Before you get started, go grab yourself a tasty beverage, a comfy seat, and your reading glasses (ha ha).

I'll start with summer, which was uneventful for the most part. We started off the summer with the whole family taking a trip to Wally World (not to be confused with the Walmart nickname). After Disney we spent a few nights at the Marriott World Center. We had Marriott points and, due to the economy and less people traveling, we were upgraded to a presidential suite with two balconies and a side party deck. While we were there, we connected with the Kennedy-Luppowitz clan (my friend Sheila from high school days and her family) who were down on holiday from Atlanta.

I was so looking forward to my son getting his license so he could drive me around in the summer, but two days after his birthday in July, he shattered his elbow on his dominant arm. He had to wait 4-5 days for the swelling to go down before he had surgery. The day he had surgery, we had a power outage in our area that lasted three days. They did the surgery on backup power and sent him home with no ice. The stores were out of ice by the time we got there. Poor Tyler had no ice, no TV to distract him, and no lights for three days. Luckily he had pain medication. Ha ha.

I was very nervous throughout the summer because of the previous skin cancer surgeries and wore a 99 SPF protection at all times. Even so, I still had a tan due to my adrenal gland causing my skin to be darker. I had a few more lesions frozen and two more treated with Mohs surgery all in one day.

Besides that, I decided to take the summer off medically and avoid doctors and tests until my kids went back to school. Which brings me to the third week in August, which is when I had repeat MRI scans of my brain, spine, kidneys and abdomen, as well as several visits to the eye doctor for follow-up on the optic nerve and retinal lesions.

After seeing my eye doctor last in September, he recommended me going to NIH or to Michigan to see a eye specialist who was doing some experimental chemo for patients with glaucoma or optic nerve issues. I spoke with the doctor at NIH regarding anything new they were working on for the optic nerve and was told that the only thing they could offer me was a chemo injection near the base of the tumor, which in my condition with my easy bleeding and platelet disorder, could likely result in bleeding and losing the vision I have left. The doctor never got back to me as to whether I would even be a candidate but told me it sounded very risky at best. At the time, no one had any shrinkage from the drug. When I researched the systemic chemo called Avastin, it has many, many side effects, one of them being bleeding, and he has seen some shrinkage with a few patients, yet when they went off the drug, the tumor got bigger. Therefore, I have opted to say my prayers and hope for the best, which I think is a good choice, as my internist, Dr. Havey, feels my body could not withstand long-term chemo. As for my vision, it has definitely worsened in this past year. The tumor has grown in size and has caused my vision to be more murky and blurry, and distinguishing colors is hard for me.

As for my neurological status, I have been getting more headaches recently and have continued to have problems with my right arm. It started out as numbness, moved to mild-to-moderate deep bone pain, and has progressed from occasional to almost constant through the day. I have yet to see my neurosurgeon to read my films, even though they are four months old, because he is so booked and I'm waiting for a cancellation in his schedule. Otherwise I will not be able to get in until January or February, when I'm almost due for new scans. My internist looked at the report and he feels the pain in my right arm is probably due to herniated disks in my cervical (neck) spine. In that area, he thinks the bones are so compressed now that they are pushing on the nerve that goes to that arm, causing deep bone pain. This is similar to when people have sciatica in their lower leg caused by herniation in their lower spine.

Toward the end of the summer, I got together with an old college sorority sister, Lori Pritchett. We went to the race track for a girls' day out, which turned into a weekend of fun. We were even given tickets to the Bears game.

I took a quick four-day trip to Vegas in September to help my aunt celebrate her 75th birthday. There were six girls in all and we stayed at the Paris Hotel on the Strip. Even sold all my gold so I could afford to travel and gamble as well. Got to see the Beatles Love show. It was so good. We walked the strip and were even supposed to meet J Lo at a hot nightclub called Pear. We were all dressed up and ready to go when my other aunt (Mary) had a fainting episode so severe that she stopped breathing at the restaurant table, and her pulse was in the 40s and irregular. The nurse in me went into action. We called 911, took the cushions off our chairs, laid them on the restaurant floor, and tried to get my aunt to come to with cold rags. After a few minutes, her head and eyes went back and she projectile vomited all over herself and me. It was tragic, we were all frightened, and luckily she remembered none of it. Now we laugh about it but that night, instead of going out with J Lo, we spent it in the emergency room in Vegas. Unfortunately, this put a damper on the rest of her trip and our trip as well, because we didn't want to leave her alone or do so much activity that it would cause another attack.

Most importantly, we had already celebrated my aunt's birthday at Mon Ami Gabi, a French-American restaurant. We sat outside on the patio in front of the Bellagio, which has dancing fountains with water synchronized with music. None of us lost too much money in Vegas and we plan to get back for another birthday someday.

Had a very busy fall season. Tyler once again played varsity soccer. Unfortunately, he missed half the season due to his broken elbow. Our team didn't make it to State this year, but we won the championship for the Pepsi Showdown, which was played the Fire Stadium. That was kind of cool. Tyler is in his Junior year of high school.

Alyssa, now nine and in third grade, keeps herself busy with tap, jazz, soccer, basketball, Brownies, and art class. Sadly enough, she still says she's bored. I don't get it. Both are doing well at school.

Steve has had another year in sales at the start-up company. He keeps himself busy working and doing all the things I once did: driving, bills, shopping, etc.

The latest news for myself is that starting in late October, I began feeling achy, feverish, fatigued, nauseous, and I had headaches and almost flu-like symptoms where everything hurts. I had blood work and urine studies done in the beginning of November. Even though I was asymptomatic, I apparently had a bladder infection. I was put on a broad-spectrum antibiotic for 10 days. When my blood was tested, my white count was elevated, so my doctor ordered another antibiotic for another seven days. My blood was drawn on Nov. 22 and my white count, instead of going down, went up into the 20s. He couldn't figure out what would cause this and said if I still felt sick in a week, to go in and see him. Which brings me to Dec. 7 when I saw him again. Since none of my symptoms had changed or gone away, he retested my urine and ordered a variety of blood tests; one set being specific for a pituitary problem.

After looking up pituitary disorders, the most common one causes a benign growth or imbalance of your hormone levels that put pressure on your pituitary gland. If this is what I have, hopefully there is an easy solution to the problem. I didn't realize the pituitary gland could cause all the problems I was having. So I should know sometime within the week whether this is the case and whether my white count is still elevated, which would mean we would need to look for another source of infection.

In addition to seeing the internist yesterday, I also got to see my urologist (the kidney guy). I love him; I even wore makeup for him. He's so funny. He said that although the scans are relatively stable in terms of size, the cysts are becoming more solid and the solid is renal cells (cancer). I thought there were one or two areas, but after looking at the scan with him, there is almost no healthy kidney tissue. It's all been taken over by growth after growth. He said, unfortunately, he could do nothing for me in terms of saving any healthy tissue, and he's surprised I have the function I have. His advice was to call the transplant coordinator. He feels I would not last on dialysis; the sickness you get from that would be too great for my body. The only option he sees is when the tumor gets to 2.5 to 3.0 centimeters, having a live donor ready to give a kidney when the time comes.

The donor needs to have blood type O+. If willing, the coordinator would send a letter to your physician and start the process to determine if you are a match. In addition to matching, there is rigorous blood testing, stress testing of your heart, psychiatric testing (to make sure you will never have regrets), and you have to be in perfect health to donate an organ. It can take six months to find a donor. The doctor suggests getting the ball rolling because in six months I could be ready for one. It's a game of roulette because you don't know when it's going to grow. Once it's past 3.0 centimeters, and if you don't take out your kidney then, you will risk it metastasizing. My largest is 2.2.

That ride home was depressing, except the doctor said, "On the bright side, you would never know you're turning 50; you're very attractive, dress well, don't look frumpy, and you're not portraying a sick person. Because your vision changed so gradually, other than seeing your skin with bruises and scarring, you would never know you had anything wrong with you. But I know you on the inside and I see you're probably one of the sickest patients I have." Well, as my brother always said, "It's better to look good than to feel good."

I'm looking forward to the holiday parties and seeing my sorority family on Sunday. Now that you've read this, next time we talk, you can fill me in on your life. That's the whole reason this blog came together in the first place.

Winter blues and a brighter spring

The winter blues (and I mean blues...)

Sorry I have not been able to post in such a long time. I was hoping that my life would hold no medical surprises for me after the new year, but unfortunately several things popped up...

In January I saw a rheumatologist who did a very thorough workup looking to see if she had any ideas as to where all my bone pain and fatigue originated from. After almost 20 tubes of blood were drawn, I was found to be borderline lupus and everything else came back negative. She wanted to watch my labs for lupus and was not convinced that was correct, yet I have nearly every symptom of this condition. Until my level goes up, she chose to diagnose me as having fibromyalgia and/or signs of clinical depression. Ha ha ha. As much as I like this physician, Steve and I as well as many of my friends do not feel that her final diagnosis is right. Fibromyalgia seems to be diagnosed on anyone they can't find a real diagnosis for and I have no symptoms of it -- no trigger points of pain. In addition, I tried the medication that treats this and was absolutely no better. I'm sure there is some depression in there as I have some SAD (seasonal) issues as well as a much changed lifestyle over these last few years. The dark dreary days don't help anyone's mood, but when you don't get light in your eyes it makes things even drearier. She looked at my skin and felt it warranted another trip to the dermatologist as she had never seen skin conditions like mine before, and wondered if it was some sort of pain-related syndrome.

After seeing the skin doctor in February, he knows of no syndrome related to pain and skin, yet found an area on my hand (an unhealed scab). After a biopsy, it came back positive for squamous cell skin cancer. So, I was scheduled for Mohs surgery later in the month.

While waiting for that, I saw my eye doctor who noticed some changes on the tumors of the retina and performed laser surgery to treat that area. Unfortunately, this is going to cause more blind spots.

Mohs surgery was simple. (For those of you not familiar with Mohs, it's an outpatient procedure where multiple layers of skin are removed, one at a time, until there are no inflammatory or cancer cells present. The reason it's so lengthy is because you have to wait an hour between each removal for the lab results.) After eight hours of Mohs surgery, the only disappointing part was ending up with a 2.5 inch incision on my hand and it went very deep, all the way to the tendon. A biopsy was taken of a suspicious area on my left shoulder. This biopsy came back as basal cell.

Things were going well until Day 10 after Mohs surgery when I woke up and found my hand red, swollen, painful, and double in size. It was a Sunday and I therefore called my doctor at home. He phoned in an RX as he felt it was an infection and said if things worsened or stayed the same, to come to the office in the morning. As my luck would have it, the next day I woke up and my arm was 3-4 times its normal size, all the way up to my forearm. After taking a look at it, the doctor recommended a direct admission to Northwestern Memorial for further treatment. My lovely friend Darlene took me to the hospital. Steve was leaving for the airport for business but the doctor told him to cancel his flight/trip. In the meantime, Darlene drove me straight to Northwestern and stayed with me until 10pm that night, and Steve came home and got the kids situated. Needless to say, this was Valentine's day. So Darlene and I both sent heart-shaped pizzas to our families to celebrate without us.

While they were home enjoying, Darlene and I literally had nothing to eat as doctors were running in and out from every specialty. After 12 needle sticks they finally got my IV started and labs drawn. I was told I had a staph infection as well as several other bacterial infections which required IV antibiotics. It looked like I'd be camping out for at least 3-4 nights at the hospital again. Waah... This time, they put a picc line in on the following day, rather than waiting until discharge. Luckily, I did not have what they all feared, compartment syndrome, as it would have caused me to have permanent loss of a part of my arm. They made me a mobilizing cast which totally made it less painful. After two days the swelling significantly went down. It took at least an additional month before returning to almost normal.

Wishful thinking, is it almost spring yet?

In March, I remained on antibiotics for the staph and other infections for another two weeks at home. I had a relatively normal month yet still continued with bone pain and still had fatigue. I spoke with the rheumatologist who put me on an antidepressant, which I took myself off of one week later as it made me shaky and I had difficulty sleeping. So I just figured I may as well get used to the pain and fatigue and try to move on with my life. I schedule little outings with days in between, and do projects around the house with frequent breaks until they can figure out a better diagnosis.

My kids were very excited for spring break the end of March, yet I overdid it and started getting sick again. The whole week I had a fever, bladder infection, headaches, and increased fatigue. After a week feeling like this and my antibiotics not helping, I took a trip to the E.R. where they said I was on my way to being septic again like last August, as I was not on enough antibiotics. Again, thank you Darlene for coming to my rescue and taking me to the hospital and again spending the evening with me. Steve cut his trip short and came back the following morning.

I hurt my ankle April 8th while walking my dog on our first nice spring day. I twisted it and thought it was just sprained. After several weeks of limping and swelling of my ankle and calf area, I decided to call my favorite foot doctor, Dr. Weil. I just saw him on May 6 and he diagnosed me with a torn achilles tendon. I'm scheduled for an MRI Monday morning to determine if it's a full or partial tear and to determine the treatment. As for now I'm back in my lovely boot.

In addition, in April, I revisited the eye doctor, Dr. Cohen, who had wanted me to return several times for recurrent laser surgery, yet I was unable to go due to being in the hospital. Thankfully, this was a good thing and the retinal tumor area appeared to have responded well to the initial laser and was unchanged. Unfortunately, though, the tumor on the optic nerve is again somewhat larger and there is no treatment still for this. He said he was going to do a search and had some upcoming conferences to see if there was anything in the works for a systemic drug that may stop vascular tumors and hopefully even shrink them.

Then I had Mohs surgery on my left shoulder. Ten days later I had my sutures removed and I'm happy to report I had no issues with infection this time around. The recent MRI of my ankle showed a split tear of my tendon, which is a very rare condition that does not require surgery. I started physical therapy and will continue to wear the boot for at least another six weeks. I see the eye doctor tomorrow and get a tooth crowned on Tuesday.

On a happier note, during the month of March, we decided as a family it's been way too long since we've taken a trip together (three years in June). So, we are all headed to Disney World in Orlando for a week of sun and fun and hopefully no limping. The kids are looking forward to school getting out June 2.

Alyssa made her First Communion on Saturday, May 14. Aunt Jan and Uncle Jim from Texas flew up to attend a wake and funeral and while they were in town we ended up throwing a last-minute Communion party. Alyssa was so excited; she got to carry the gifts up at the church and looked like a little bride. I will post pictures on this site when I get them back.

The following day we spent with family. Unfortuately, Tyler was unable to attend due to a travel soccer game. On a positive note he scored a goal and got an assist, but he broke his toe in the process. It was great to see the family again since I have not seen everyone since Christmas. Thank you Stacy for going that extra 40+ miles to pick me up, and Winnie and Lou for bringing me home. Next, we look forward to Alyssa's tap and hip hop recitals June 4 and 5. We bon voyage June 6 for Orlando. And, having both kids heavily involved in soccer keeps us busy. In addition to Tyler playing for the travel team, the Magic, Alyssa plays rec soccer.

I have learned my lesson on waiting so long between posts, as more than five months have elapsed since my last one. I promise you all this won't happen again. Please keep in touch and I hope to see you all this summer. Hope you enjoy the end of the school year and are looking forward to summer.