TERRI’S SISTERHOOD OF THE SOON TO BE TRAVELING TA TA’S UPDATE

TERRI’S SISTERHOOD OF THE TRAVELING TA TA’S and YA YA'S

NEVER GIVE UP, NEVER SURRENDER!

December 2013 - May 2014 Archive

Done in reverse chronicle order. New entries on top, older on the bottom.

May 30, 2014:

Good news!!! I had a PET scan this last Tuesday and there is no other cancer except the tumor in my leg!!!

Otherwise, Bill and I went to St. Pete for a few days last week and Karen stayed here with Kaylie. We had a nice time. The weather cooperated nicely. Not too hot, not too cold. Didn't do much. Ate our way through St. Pete lol. Read some books. Relaxed by the pool. Same stuff we do at home, but with different walls to look at. The good news is Bill got a break in caring for me and Kaylie. Kaylie stayed home with Karen. I was more self-sufficient in the hotel since it had a small kitchenette and not as much walking to living room, bedroom etc. It worked out well. Returned a few days early. I started to get more pain than usual and missed Kaylie a lot!

Meanwhile it's summer down here and we hope to enjoy the pool soon. Right now my diverticulosis has flared and I am on an antibiotic which keeps me out of the pool or sun until a few days after I finish it.

May 10, 2014:

My leg, hip, thigh, and knee were very testy since last Saturday, but after steroids and chemo on Thursday they were all better on Friday. I was stubborn on Saturday and thought I could do a ten minute standing stint in a store with just my cane. Boy, was I wrong and paid the price for six days. I'll try not to make that mistake again!

I was given steroids and Benadryl to stop the itchy, creepy crawly buggy sensation followed by pain that made me crazy after my last infusion. I am happy to report that seemed to do the trick. I was really wiped out from chemo and my Dr. appt, much less Benadryl Thursday, but I managed to sleep all day and all night and woke up at 8 am on Friday bright-eyed and bushy-tailed :-) I can't remember the last time I was up that early or felt so good! Nothing like a steroid and a good night's sleep to make you feel better!

Unfortunately, we're not sure if this chemo is working either. We're on Cycle 2. When I finish Cycle 2 or 3, depending on how I'm feeling, a PET scan is ordered for 5/27 with a possible bone scan after depending on those films. We're sort of at a fork in the road as to how to proceed, but we'll know more after another round of chemo and diagnostic testing.

It's our anniversary today!!! 33 wonderful years! Okay, maybe not wonderful since my diagnosis, but still pretty good ;-) I'm still the luckiest woman alive with Bill by my side! Next week we're going away to celebrate. Not far from Moffitt. Flying is just too difficult for me to do so that's out. Heading to St. Pete just to chill and unwind. I have hotel points saved up that are burning a hole in my pocket. See some sunsets, read a book and some down time for Bill. We were going to take Kaylie with us but in order for Bill to have a relaxing vacation Karen is coming to stay with her. Kaylie needs a piece of fresh meat to chew up and spit out lol! Poor Karen!!!!

Have a good weekend and a Happy Mother's Day!!!

April 27, 2014:

Well, we finally decided on our new car...

OK, that's not it!!! That's the dealership owner's Ford GT. We actually bought a new 2014 Ford Escape (Silver).

We got a really good deal and a decent trade-in allowance for our 2 very old Saturns. Josh N. @ Brandon Ford took really good care of us. He was patient with us and found just the right vehicle for our needs. If anyone is looking for a new Ford, let Bill know. He's got Josh's contact info. I jokingly said that I wanted to sit in the GT, the one with the "Please Look But Do Not Touch" sign. I thought it was a Mustang and it fit in with my bucket list, LOL. Josh got the very rare permission for me to sit in it so that I could have Bill take my picture.

We needed to get an SUV so that we could get a scooter lift installed (tow hitch needed). We're hoping to see what that's going to cost in the near future.

I got my 2nd dose of the new chemo last Thursday. It went OK, but I had some itching that night. I'll be asking the doctor about premeds to hopefully rule that out for my next dose on 5/8.

Really tired from the long day buying the car. We ran out to get some dinner and did a quick grocery run tonight. I'm shot... LOL

April 20, 2014:

Long day on Thursday for the new chemo. I needed echo to finish requirements of clinical trial, then chemo (you get labs first, then go eat to give them enough time to process labs), then chemo was still 1 1/2 hrs long. Chairs aren't as comfortable as in the clinical trial lol. Actually, chair was fine, just up against the wall and I couldn't recline all the way. Some nausea and medicine head. Lots of pain in the leg probably because of the way I was sitting. Better today. Next week I think I'll ask for a bed so I can raise up my leg better.

The good news is no steroids with this one so my glucose was better. Chemo can still affect it so I still have to be careful for a few days. Otherwise all is good!

April 10, 2014:

They are changing my chemo due to possible tumor fever and tumor growth. I have to go on Neupogen to improve my white blood cell counts. For this chemo I'll be on it for two weeks, then off one week. I hope this chemo works because this is getting old. I guess at this rate the idea is to keep the tumor from getting larger, if that's possible.

April 5, 2014:

I started to liberalize my diet after the diverticulosis and guess what? My fever and stomach acted up again. I'm back on antibiotics and doing the diet again. The sad part is I only went off my diet to have oatmeal and a chicken enchilada Smart Ones (2 small corn tortillas) and not in the same day, but over a week. Otherwise I'm doing well.

This week I didn't have chemo since it was my skip week. I did have to go in for labs and an MRI. The MRI was of the tumor in my leg to see if this chemo treatment is working. I get the results next Thursday. If it's not shrinking, they will change my chemo. The bad news is that if they don't find something that stops or slows it's growth, they are going through everything in their chemo box and will run out of options soon. The good news is I think it hurts less, but is more pronounced when I look at it (I have lost weight, which can make it look more pronounced).

Rob finally made it over from Orlando for a visit and I was feeling good enough to go out to dinner. Here's a picture of us at the Green Iguana in Brandon.

March 23, 2014:

I thought I posted this picture of me at Tiffany's trying on a $52,000 necklace and Bill thought I posted it, so oops, here it is. I am also wearing the latest of fashion, a crocheted tiara LOL. I started making headbands to keep my soft hats on better. It just feels snugger and I'm not constantly adjusting the hat. I made this one and joked that it looked like a tiara so for the picture I took off the hat and left on the tiara. The security guard watched us like a hawk because, yeah, me in the scooter certainly looks like a burglary waiting to happen.

Meanwhile I'm up to chemo, Cycle 2, session 3 this Thursday and am feeling pretty good. My fever is gone for now. I hope it stays away. I finish the at home antibiotic tomorrow and pray that it won't return because it probably means another issue that can't be ignored.

I am following the diet for another week or two, just to give it plenty of time for the diverticulosis to resolve. I don't want that back so I'm not rushing to get back to a somewhat normal diet. I will have to continue to watch seeds, nuts, popcorn, nacho chips, anything that can get caught in the diverticuli pockets in my intestine (where they got stuck and bacteria built and caused an infection), but in a few weeks I can start eating a normal fiber diet. Right now it's a low fiber diet, which means white bread, farina, and lots of boring stuff. I'm okay with boring as long as it means my stomach doesn't hurt and the fever resolved.

This weekend I actually felt well enough for Bill to take me to the mall. It was a short trip (basically a return) but we were able to eat out (no nuts, seeds, etc/low fiber) for a change. I felt stronger coming out of the hospital this time, which is a nice change of pace. I'm in less pain (probably because I lost weight) walking so I can get around better.

Haven't been working on the bucket list except for the necklace below. Not that I was ever a jewelry person but it was fun to have such a wonderful piece of jewelry on me! It just glows with my $10 earrings!

March 19, 2014:

I came home last night but my temp came up again this morning. 99.9°F. At 101.1°F I have to call them. They usually give me another number like 102°F and I have to come in, be evaluated, admitted and/or be released. Usually if I have to go in, I'm admitted.

It's really what they call my "new normal". Always expect for things to change in my condition when I least expect it. It's harder on Bill because he has to drop everything and arrange his schedule to accommodate this.

I'm not sure if I get my scheduled chemo tomorrow. They might want to wait until I'm off my antibiotics.

I do feel better and have to adjust to my diet that I need to follow for a few weeks. Low fiber, low residue diet. No seeds, popcorn, nuts, nacho chips, like I'm going to eat that right now lol. After I feel better in a few weeks, I can add more fiber, but I'll still have to always monitor nuts, etc. I also have to combine this diet with my diabetes issues, which is quite a feat lol!

Thanks for all the warm wishes!

March 15, 2014:

From Bill

Terri's fever spiked again last night and wouldn't break. I ended up taking her to Moffitt and they're keeping her for a day or two so that they can determine where the fever is coming from. So far we have a good news/bad news thing. Good news is her labs so far are good. Bad news is we still don't know what is causing the fever. When I left her, she was in a room, with her dinner and in good spirits. Stay tuned...

March 14, 2014:

From Bill

Terri 's going to be out of commission for a few days. Her fever peaked at 103 the other night but she's fine now. The doctor was not terribly concerned since there were no other symptoms beyond the temp and it resolved on its own. They restarted her chemo yesterday, but she is no longer taking the study drug. Right now, she's doing better than yesterday, but still seeing:

Residual temp
Shaky hands
Overall fatigue

Stay tuned...

March 6, 2014:

I didn't get any chemo today. It seems either the diabetes spike or chemo is causing neuropathy in my hands and fingers and they have to figure out which one is doing it before it causes permanent damage. If it goes away or is less painful next week or the week after (I might have to skip next week too), then it's probably the chemo and they will need to change my chemo medication. If it stays the same, it's probably the diabetes and there is a drug for that.

Otherwise, we're all good ;-)

February 23, 2014:

I may be wearing a pansy flower, but I'm not one because I had my chemo that day!

Hat and smile courtesy of Lisa!!!!

February 22, 2014:

Terri's fine, no really! I speak of myself in the 3rd person because I send these notes to Bill and he puts them up on the webpage.

BUT, if I offended you or promised you money these last few weeks, it was the chemo/high blood glucose talking and sorry but you won't be receiving anything and I'm sorry for whatever offended you but you'll have to get over that too.

FOR ANYONE WHO UNDERSTANDS THE HIGH GLUCOSE DRINKING SYNDROME (you behave like you're drunk like stumbling, mumbling etc. when your glucose goes up) you understand why I was in the ER the other morning.

For all my old buddies (let's put Carol at the top even though she isn't the oldest chronically). Carol won't hurt me, she's so happy I had a good day. Along with the young ones, like Andi (young at heart ;-), Doctors (let's give a shout out to Dr. M!) among the masses who care for me, Pharmacy buds (Hi Nancy and Jose), and all family and friends who have or know someone with diabetes (I started a list, it went like this "Hello to Dora, Ken, Bill, Fran, Millie, etc" and got tired of typing") And anyone I may have forgot I claim high glucose now ;-)

You probably heard of things that can raise your glucose levels without really knowing. My levels were mildly high, but came to a trifecta, several weeks of mild doses of chemo, steroids (used in conjunction with chemo) and a slight temperature (I'll blame the actual tumor for that) and poof, there you have it, a whacked out Terri. The sad part is I didn't act drunk but was sleepy, thirsty and running to the bathroom a lot. I came to my senses at 1AM and checked my blood sugar.

Just a reminder, take that glucometer out and use it. I almost went back to bed because I thought it could wait until morning, but realized that could have been deadly. Let's be careful out there!

February 21, 2014:

Blood sugar was high the other night but good now. Due to steroids from chemo etc. I was in ER for a few hrs and see regular MD on Monday for medicine adjustments.

Kaylie goes to vet tomorrow am. Poor dog is scratching (why I'm up on kindle at 2 am). Vet gives her a steroid shot that lasts 8 weeks or so. She's overdo. Yes, we see the irony too ;-)

Until something else happens in Seffner the headline is "No News is Good News"

Happy weekends!

February 19, 2014:

Hi Everyone:

I had my 3rd clinical trial and chemo yesterday from 9-3:00 and got up about 2 hours ago. It's now 4 am. I had a very vivid/mad dream yesterday followed by a bad itching spell and was told to take Zyrtec. Dr thinks each week will get better. Each week scares me more. Also have signs of another UTI. Each UTI and chemo with trial scares me more.

Next week (2/25) I go for labs only. On (3/6), I get labs, clinical trial, chemo, see Dr. PA. By then I'll know if much better or worse. I have to ask that you check the website on a regular basis now. I have a lot of trouble focusing, typing, writing, responding etc. Bill has too much trouble concentrating and caring for me along with work and doing household stuff and caring for the dog.

I already have issues with returning emails and cards. Although I appreciate them I know I'm not making any sense plus I sleep a lot. It has taken me over 2 hours tonight to do this note.

If I'm not much much better by 3/6 I'll work on chemo, but even I know I'm on trial and not on placebo, I'll give that up and just do chemo.

I won't be answering notes, emails or letters but will be reading them unless I'm having a good day.

For those interested, here's my next few weeks' treatment schedule:

Tue, Feb 25, 2014 - LABS ONLY
Fri, Feb 28, 2014 - Injection
Thu, Mar 6, 2014 - Labs, Dr. PA & Chemo

February 11, 2014:

I "think" today was better though I ate a bagel and slept from 4 when we got home until I drank a Gatorade and took more pain meds at 9 pm and again at 1 am. I'll know more tomorrow. They gave me 3 Decadrons for pre-med and I slept through the whole treatment. They did not change my meds, but had 3 shots of Benadryl100 mg aside if I had issues lol. They did give it to me much slower so we were there longer but I tolerated it better. They think it was a combination of the UTI from the week before and recovering from that (my specimen was bad - I'll spare you the details lol) along with the 2 drugs that really made me so sick. On the plus side, most of the side effects point to the clinical trial and the chemo effects so that's good)!

I'll know if it's the trial and if it's working in a few weeks at my next MRI in a month or so although I'll need chemo forever or as long as I can tolerate it.

I'm hoping to get a pre-made sandwich from fridge instead of relying on Bill so much, be more self-sufficient and stay awake more this week. This past week was no quality of life and Bill and I were speaking of giving up either the trial or chemo if that was all I could expect. I've had trouble eating and walking but not as bad before this week. Very unsteady on my feet and can only eat small amounts of food. I also have a lot of trouble expressing myself and focusing when talking/thinking. Very frustrating! Since chemo was easier we hope things in general will get better.

We talked to my nurse and they feel if I was given the clinical trial, and I have a longer chance to live. Going every week is a pain in the ass an and depending how long I can tolerate it the longer I'll live. I trust them a lot though! They said if this doesn't work there are other drugs and options.

Oh, new side effects. Some are funny. In real life I bought wheat flour to bake Kerri (Kaylie's playmate up the road) and Kaylie cookies. Sure, this coming from a person who can't stand or make her own sandwich lol. In dream life, I start the baking, something goes wrong and I start again. Times 20-30 times lol. One problem, I gave away my rolling pin lol. I have another one. Just have to look for it.

Last night's dream - stuck in Sam's Club for some as sort of special with a million other people (new store). Every senior had multiple pallets of food. I had a package of the greatest looking tomatoes. Nothing else. Couldn't find the check out. Wanted the damn tomatoes. Then hit restart of dream. PS-everybody knows I hate to shop and no wheelchair or scooter. Everyone was mad and it was pure hell!

In another dream zombies were sticking me with pins. Kaylie was in bed with us and her toenails need to be clipped lol. Tonight no more sleeping pill, just pain meds! She also goes for a grooming today!

Remember no news is good news! Hope to type to you soon. If not, don't worry...just recouping ;-) Thanks for all the good wishes!

Some Thank You's due...

Lynn-cleaning and dog sitting

Lisa-hats and crocheted knitted flowers-I get so many compliments! Today was pansy flower and hat...because women are not pansies! We are strong!

Ellen-food for Bill! He just loves it!

All the emails, phone calls, etc, even though I 'm not up to answering them all Requests for grocery shopping. Seems every time Bill goes out we get a volunteer. Thanks to Ellen and other cookers we are trying to empty freezer-it needs to be defrosted bad. Believe me when we reach that point we we put out a request!

Carol-sorry for scheduling, canceling, and re-scheduling. You're here for such a short time, the weather is good and I feel crappy. Go enjoy your trip and I'll see you next time.

Ttys! Love to all.

February 9, 2014:

Sorry there has been nothing posted lately. Bill is exhausted and so am I, only he's the one who has a reason to be. Since chemo on Tuesday I've been sleeping all day and night except for eating when I could. I have no appetite, but know I have to eat at least a little bit a few times a day. Sometimes I'm nauseous for no reason at all. I think I could deal with everything if I just wasn't so washed out and exhausted. I had chemo on Tuesday, feel a little human today and get to do it all over again on Tues. Other than nausea, lack of appetite and exhaustion the side effects so far are dizziness, stomach pains, headache, to name a few, oh, and hiccups lol! A shower is a chore and I have no desire to read, crochet, or anything other than sleep. It's cute though, Kaylie may not understand but you can tell she's concerned about me because all she wants to do is cuddle in bed with me.

To make matters worse for Bill, his allergies are acting up, he sneezed and threw out his back. I swear, all this is harder on the caregiver.

Okay, so exhaustion is kicking in again. Time for sleep. Just want to let you know I'm hanging in and Bill is just as exhausted but without the drugs :-)

February 6, 2014:

I'm not up to par to go on my computer to check emails, etc. so please forgive me if I'm not getting back to you in a timely manner.

But, I do have to wish a very Happy Birthday to a special person in my life. Today is Bill's 54th birthday! He is my support, my comfort, and my shoulder to cry on! Without his care and compassion, I would not have survived this long. He's there for the good times like smiles, morbid jokes, and taking me places when we're both up to it, even if it's a trip to Michael's or the pet store. He's also there for the bad times like emergency room trips, doctor appointments, chemo especially those with adverse effects, but most of all, my bucket lists with snakes, lizards birds and pet stores lol!

I just want to thank him for abiding by our wedding vows, especially through sickness and in health. Thank you Bill and I'll try and keep it together for you so you can have a great birthday!

All my love and thankfulness. All my love "for infinity and beyond" ∞

February 4, 2014:

Terri started her chemo and clinical trial today. It was a long day, starting at 2PM and we finally left around 8:30PM. She had a slight reaction to the chemo drug, but they were able to give her something to counteract that and then restarted it. She did OK after that. She's tired, but otherwise seems OK.

BTW: On Thursday, they were able to get her port working. And on the scooter front, they were able to fix the scooter and we're still way ahead of the game in what we spent on it. :o)

January 29, 2014:

My last test was scheduled for 5:30 but MRI was backed up 2 hrs. We didn't leave Moffitt until 9 pm. I fell right to sleep after it was over. In fact, we know quiet spots in the hospital and I took advantage of them while waiting for my next test. I was (and still am) hurting so bad from laying still in those machines. I took extra pain meds with me but it barely helped. They had so much trouble getting me up off the last table I thought it would take a shot of morphine! And the best part is I go back tomorrow, just not all day, at least that's the plan! I get EKG, labs and echo tomorrow and if everything is okay, I start chemo Tues. Oh, and did I mention my port isn't working? They will try to access it tomorrow again because it worked once yesterday but not the other times and believe me, they gave it the college try.

Oh, and to add insult to injury, my scooter is giving me a hard time. It goes then s-l-o-w-l-y STOPS dead. I have a call in for service. The battery has a great charge. We think it's the switch/lever that I use.

January 17, 2014-UPDATE:

Testing begins on 1/28 and again on 1/30. They will get a baseline EKG, labs, CT of thigh, MRI of thigh, bone scan, echocardiogram (etc.) as a baseline. Through the whole clinical trial, I'll be filling in tons of forms and answering a lot of questions. This tells them how I am when I started the clinical trial. I should be able to start my chemo the first week in February. So far, I am proceeding on the clinical trial as planned and unless something unexpected comes up, I have been accepted as a patient. Just a reminder, I don't know if I am getting the actual drug or a placebo (sugar pill). Hopefully, I will get the actual drug, unless of course, there is something major wrong with it, then I hope I get the sugar pill LOL.

January 17, 2014:

First thing is first. My temp varies from day to day, but overall; I feel better with regards to pain. It seems one day is okay and the next, not so great but I'm better than I was feeling last weekend. I also tried an experiment and left off my leg stocking but kept my leg elevated (as usual) through the day and then at night. It seemed to reduce the swelling in my leg, and with that, reduced the pain. This morning I reduced my pain med by 1/2 and will see if that gives me more function and stamina with little or no pain. I'll keep you posted.

Meanwhile, I know what is causing the delay in getting me into the clinical trial. Okay so before you ask, no, they don't save both breasts in a glass jar someplace, even though they were exquisite in their prime lol, but Moffitt didn't have enough tissue that showed the actual lymph node tissue, so they had to go to the surgeon who did the original biopsy. When they do this, forms are filled out explaining what the tissues will be used for such as treatment, study-or like me-a clinical trial. Then they will fax the request along with my okay. Someone signs off on every step of the way, which also takes time. The tissue samples are found (slides), reports are gathered and then shipped to Moffitt, usually going through Pathology so they can confirm what they are looking for is there. Another report goes to my oncologist, with another report, who sends the slides and reports to the drug company who is running the clinical trial. FYI, who in this case, they are not manufacturing or producing this drug, but are large enough to handle the study, which I found interesting.

Well, anyway, what does that mean to me? They should have an answer about the trial and my start date, either for the trial and regular chemo, or just regular chemo in two weeks. I expect a clarifying phone call today. I know it seems like a long time, but my last Dr. appointment to discuss the clinical trial was 12/19. With the drug company closed for two weeks from Christmas to New Year's (believe me, I'm talking full weeks. They don't do Wednesday to Wednesday, but the Monday before Christmas until the Monday after New Year's. If you are looking for a job, try drug rep)!

Had I not worked in a pathology office in a hospital I probably wouldn't know this. I did think I'd know a little sooner, but factoring in the holidays, I see the delay. FYI. Another delay is Monday for Martin Luther King's birthday. There are just way too many holidays from Thanksgiving through January and not enough from March through the end of summer!!

Now here comes a big favor! Please be my HERO!! You've probably already heard me complain about this, but the 1998 Breast Cancer Act forced insurance companies to cover their percentage of any and all medical procedures (such as mammograms, mastectomies and breast reconstruction) for those diagnosed with breast cancer, but it failed to cover therapies, medical devices and equipment. This started as a grass roots movement many years ago and I had hoped to be in Washington, DC for its passage, but unfortunately due to my health I won't be able to attend.

Well, anyway, breast cancer does not always stop with surgery and reconstruction or new bras with fake ta-tas. It sometimes produces lymphadema, which is best explained on the website. Unfortunately I suffer from it along with many other people, from infants to the elderly. If we've met, you have seen my sleeves. If you visited my house, you have seen bandages, machine/pump along with devices to allow me to put the stockings on and to remove them by myself. None of this equipment is covered in any way through most, if not all insurances. It is a disgrace that it takes an act of Congress to force insurances to cover such items.

I will be sending out a general email to family and friends, but am also including it on my site. It will literally take 2 minutes for you to do. Please click on the "TAKE ACTION" button. Fill in your zipcode and this will find your local congressman. Add your name and address, click the appropriate buttons (such as are you submitting this as a patient, a family member of a patient, etc.)

This will write a letter to your congressman asking him for his approval in Congress. Don't forget to press submit! Please take 1 more minute and ask your spouses, family and friends to do the same. It is not limited to one per address ;-)

Sincerely grateful, Love to all Terri

January 12, 2014:

Feeling lousy. Temp is up, so this will be a short note.

My lymph leg and arm are very swollen so I'm laying down a lot yesterday and today. Probably tomorrow too. I have a fever we're watching closely. Cancer/tumor makes your temp go up due to your body fighting the "invader". A temp of 101 or higher gets me a ride into ER. If the lymph nodes get cranky, that doesn't help either.

Well, I'm sitting in the chair and have chills. Getting into warm bed. Oh, I had my head shaved yesterday. Got tired of waiting to hear when my chemo starts and I needed a haircut badly. Bill can always neaten it up when I have to. Thanks Demma, Donna and Joann for squishing me in. You have to go when you have the guts! Sorry I didn't wait for you.

Oh, Lisa's dog, Kerri is having knee surgery on Monday, please send Yorkie kisses her way!

Bill will post something on website if I end up in ER (doubtful, but what do I know lol). Otherwise no news is good news! Ttyl

January 6, 2014:

Happy, Healthy New Year! Same old stuff here. Waiting to see if I'm accepted into the clinical trial. They (the lab) are probably back into the offices and doing their testing, but are probably backlogged. I'll keep you posted if I finally hear from them. I don't know where I get all this patience from. I guess I'm too tired

Meanwhile, my concentration is terrible and my stamina is awful. Dr. appointments are abundant :-) Tonsils are still healing but at least I don't have an infection or thrush (a common problem after having your tonsils removed). I thought there was a problem with my port but that's fine too. Just a pinching feeling (last time it was a pulling sensation). I'll just get used to it.

December 28:

My laptop bit the dust. The screen back cracked open on the laptop and we're not replacing it. I will be kindling only, which means short, sweet answers because I hate typing on the kindle. It's just as well because I get tired and have trouble concentrating with my pain meds. You can try to call but if there is no answer it could mean I'm in pain, at a doctor's office, or sleeping (I've slept in excess of 16-18 hrs with a Boost or two to wash down my meds on several occasions-Bill would probably say more than several times lol). Please don't be offended if u don't hear back from me right away. I don't even hear the phone ring. I owe quite a few phone calls and if not before, they will hear back from me definitely after the holidays). It's not that we've been doing much, it's more like I can't do anything and Bill is just trying to keep up. I just finished physical therapy today!

Once I start chemo the tumor should shrink and relieve some of my pain, which should mean less pain meds but more chemo brain...oh, goodie!! I can't start chemo until I know if I'm in the clinical trial. If I'm not in clinical trial, then I just start chemo. The labs at the pharmaceutical companies aren't even open during the holidays. With the backlog of testing I'll be lucky to hear anything from them until the middle of the month, at least I hope to hear from them by then.

I will be typing updates for the webpage and sending them to Bill so it will be updated from time to time. Figure no news is good news. I'll post this note on there in case I miss sending this email to someone.

Thanks for all the support and well wishes! A happy, healthy New Year's to all. I swear, for once this has got to be a good year for me! All good news with the cancer, no back/sciatica surgery, no rods in body parts, no more lumps or bumps, no tonsil surgery, and no dentists...I don't like dentists lol

December 19:

Short message because I'm really tired and wiped out.

Hormone injections were stopped because they are not working. Tumor in thigh is larger and harder which is allowing it to press on nerves (sciatic). I am starting taxotere (chemo) as a low dose for one day a week for 3 weeks, then skipping a week for as long as I tolerate it (6 months, maybe over a year). They are also putting me in a clinical trial (BKM120). A clinical trial means 1/2 of the people in the study gets the real drug and the other 1/2 gets a sugar pill and no one knows who gets what except the computers. Hopefully; I get the drug, and it works for me.

Right now I'm in a holding pattern until I'm approved for the clinical study. Considering the holiday period, this could take a few weeks. Once approved, I can start treatment. With the exception of an EKG, I think all the testing is ready. I should hear from my oncologist in a few weeks, meet up again to explain the treatment, risks, etc., and start treatment.

Sorry for the short message. They are also adjusting my pain medications to give me enough pain relief without knocking me out. We're not there yet.

Ttyl and thanks for all the encouragement and concern.

Love to all, Terri

December 12:

Hey, guess who? Unfortunately, I am unable to make phone calls. I was doing better until all the talking and explanations to the hospital (oncologist, radiologist, nurses, etc asking questions constantly) and am still hoarse and unable to project my voice to be on the phone. I promise to answer all e-mails pending in the next few days.

My pain scale is a 3:10 which is about par before all hell broke loose. The pain in my leg on Tuesday came out of no-where. It started with its usual morning stiffness, I had breakfast, had my routine lymph arm sleeve pump and things started hurting more than usual. I figured I was in bed a lot the week before with tonsillectomy recovery and needed to proceed slowly and work my stamina and leg muscles (walk more in house but not overdue). I wasn't doing well all that night and moved from chair to guest bed back to regular bed. I was not going to wake Bill for ER visit if it killed me-he was so tired from a sleep study the night before.

In the morning my pain level was off the charts and after calling various doctor's offices and getting no-where, we went to the hospital. I was off the 1-10 scale once we got to the hospital, but my pain level now is about a 3. In the hospital I was on Dilaudid pump with a continuous feed and extra pump that I controlled if needed, not to exceed 6 times an hour. Wednesday they took me off the pain pump and put me back on my regular pain meds but at higher doses. I'm on the pain meds I was before, just higher doses and around the clock. No more Extra Strength 8hr arthritis Tylenol during the day like before. My driving days are also over.

Okay, the soft tissue tumor (boob on my right thigh) that had been treated with radiation last year is now a "C" cup lol. Between that and the known small "spot" in the same area (which is the same size it's been) is now combining and pressing on my sciatic nerve. This pain radiates from my calf muscle to my back. This is not in any way related to the back surgery I had in 2012 so I don't need an ortho surgeon or any back surgery, which is good.

This "spot" was explained better to me from my physical therapist who was here this morning. Evidently, as we are growing up, we have-for lack of a better word-a cavity in our bones. We all have them. I have an somewhat empty spot there, enough for the tumor to press on the sciatic nerve, which is a lot better than it being termed bone cancer. I am not sure that this is correct though.

The bad news is since the tumor is growing it looks like I need chemo to shrink that tissue mass again. I do no see my regular breast clinic physician until Thursday when she will have the results of this coming Tuesday's already planned testing of bone scan, CT and labs. Then we talk. She is my go-to Dr (regular oncologist who takes care of all my daily needs) and I trust her opinion. I also spoke with my ortho oncologist (bone dr). He thinks I might benefit with radiation, but maybe 10-20% only. It could only last for weeks/months. Bill and I are leaning to chemo and getting it over with and holding radiation later until that's all we have left to try, as they can only give me radiation so many times before it doesn't help anymore or or causes more harm.

I do know that it will be a different chemo and not the same meds they did with my first breast cancer treatment. These new drugs will probably be stronger, longer and with more side effects. Since I don't see my doctor until next week I don't expect anything to start until the following week (Christmas week). I know they are closed on Monday and Tuesday for the holidays. I don't care, just want to get this show on the road.

This also changes my prognosis, but we won't know until we see how I tolerate chemo and how well the chemo works. Probably at least a month or two after my chemo but don't quote me, that's just my guess. I might have to finish the whole course to know if and/or what benefit I get from it.

Just a reminder, my routine is to sleep through it all. If I'm not responding to emails I will, sooner or later, respond from oldest to newest when I find myself able. I know I owe a few from weeks ago and I hope to be able to catch up tomorrow.

Mostly everything is posted on that with more frequency during major illnesses or treatments. If u hear nothing, I'm par for the course. If I'm too ill, Bill will post a message. Please ck website and be patient. Bill has a lot on his plate and my stamina will suck more than ever, not to mention, I'll be sleeping through it all as much as I can. I've also have an amazing ability to sleep through phone calls lol. It scares everyone who calls, but I just don't hear it and I do have a tendency to scare the caller who knows I should be home. Don't panic lol. I'm sure I'm fine. It's probably due to the pain meds. I don't hear the doorbell either. The nurses woke me by rubbing my arm. I'm asking Bill for backrubs LOL.

Forgive us if we forget birthday and anniversary cards, etc. Our minds are selfishly on other things. Also I appreciate your gifts but pls don't feel obligated. Just keep in mind flowers and plants are a no-no at this time. The water grows bacteria which opens me up to infection. Pls don't visit if you even have a sniffle...even if you r pretty sure it's an allergy unless your allergy med is very working well. If you have been near children, please stay away. They can be sick one day and miserable the next. A cold or flu can be devastating to me (although I got a flu shot...they never know if they estimated the correct flu combo in this year's shot). A phone call is more than welcome. Another no-no is sugar. We are great foodies but the best things for us and food is sugar free. Low sugar items helps keep my glucose in control and allows the chemo and my body to heal. Not many people know, but high glucose is raised by high stress levels, which hurts Bill's glucose control. If u have a gift in mind and are not sure his e-mail is bill@yavit.net. It might take him a few days to get back to you. But again...I feel all your love and thoughts and prayers and don't need anything other than your support and understanding if we can't make plans, trips, visit with you in terms of catching something, etc.

Oh, tomorrow starts weeks of physical therapy and one visit from occupational therapy. PT is usually three times a week. They call in morning with a time. I either might not answer phone or pick up and let you know I'll have to call u back.

December 11th:

Good News - Terri came home this evening.

After spending the day at Moffitt with her, we finally got to see and speak with several of the doctors. And Radiation Oncology finally came in to see her.

What we know:

The original tumor has grown and is pressing on the sciatic nerve
While they can re-irradiate the tumor, they're not sure how much benefit it will provide
They've provided a change to her pain meds and her pain is much better managed
She sees her regular oncologist on Thursday next week to discuss the treatment plan
Chemo is the most likely course of treatment and depending on what her oncologist thinks, perhaps radiation too
There's nothing surgical to do

What we don't know:

What kind of chemo, how long or how frequent

More updates as we get them, but both Kaylie and I are glad to have her home.

December 9th:

Terri is getting her Christmas wish - a new port. After all the trouble the ER's had drawing blood, she really wanted a port. They're putting it in tomorrow.

The Ortho surgeon was in today and confirmed that the MRI shows the tumor has grown some and agreed with his partner's assessment that it is pressing on the sciatic nerve. Since Terri has also been talking about some back pain recently, he's ordered a back X-Ray to see if there's anything going on there. He's also talking to Radiation Oncology to see if she's a candidate to try radiation again. They usually don't do that to an area that's already been radiated.

They're probably going to be doing chemo. We're not sure yet when they'll start or what kind of chemo or the duration.

They did start PT today. They walked her out to the nurse's station, which exhausted her.

Stay tuned for further news as I get it.

December 4th to 7th:

Hi Everyone,

For those of you that don’t already know, Terri was admitted to Moffitt Wednesday night. She was just starting to recover from her tonsillectomy when her leg pain started to get worse, to the point that the pain meds weren’t even taking the edge off. We had to call an ambulance to take her to the ER Wednesday afternoon. After some tests and films, they decided to transfer her to Moffitt.

As far as what’s going on with the pain, although they don’t think it is a blood clot, they are giving her a small dose of Heparin, a blood thinner. Pain Management is working on getting her off of the pain pump. They tried something last night, and while it seemed to help with the pain, a lot, it also gave her double vision. The ER saw a spot on the femur, but we don’t know if it is a spot that we were already aware of or if it is something new.

The Ortho doctor was just here and said that he’s reviewed the films taken at the ER and compared with the MRI taken in August. It looks like the tumor has gotten bigger, but they will be doing an MRI so that they’re comparing apples to apples. It is hard for them to compare CT’s and MRI’s. He feels that if the tumor is larger, it may be impinging on the sciatic nerve.

After the MRI, we’ll have to see what next steps are, but probably include chemo again. Besides all that, she’s also running a fever and they’ve got her on IV antibiotics.

I’ll be updating Terri’s website, http://terri.yavit.net, in the next couple of days. Please be patient for updates.

Bill

December 8th:

Not much new to report. They discontinued the Gabapentin, the non-narcotic pain med, because of the double vision, so she's still on the pain pump. They're also still waiting on the MRI results and the fever still comes and goes, but always seems to be above normal. She resting mostly comfortably, but the Dilaudid, the med in the pain pump, makes her very sleepy.

I'll try to update more frequently