In order to keep everyone up to date without having to respond to a whole slew of emails that neither Bill or I have the energy to do, we're now updating the website on a weekly basis.  If there is no update in a given week, don't worry, there's just nothing new to report.  We appreciate everyone's emails, thoughts and prayers. 

 

Animal bucket list pictures are in the archives, starting 7/2013. One archive back ending 6/2013 are puppy pages, including Kaylie, my Yorkie.

 

December 20, 2016

 

December 7, 2016

 

 

November 10, 2016

 

October 23, 2016

 

October 21, 2016

 

October 19, 2016

 

October 12, 2016

 

 

 

October 10, 2016

 

 

September 30, 2016

 

Oh yeah!  Another possible side effect is fever!

 

September 29, 2016

 

My doctor gave me a few choices, such as continue chemo, which isn’t improving anything, but keeping things from just going completely haywire, or trying something else. I already decided to ask what else we can try before my appointment. Although I am not ruling out more chemo down the line, I’d like to try something else. My oncologist was on the same page. So I’m going to try immunotherapy- which they have seen good results from lately. So I have to wait 2-3 weeks to get insurance approval, which is typical. It used to be a wait of a month or longer and fight tooth and nail.

 

At least one of the immunotherapy drugs - there are lots of them that they are using. My oncologist recommended this one as my tumors are undifferentiated and this drug has a good track record with this type of sarcoma. It does have side effects, like dry mouth (you gotta be kidding me!), diarrhea, shortness of breath (I have to contact them immediately for that) plus a whole bunch of minor things. Where chemo destroys all cells, immunotherapy drugs brings your own immune system cells out from hiding and helps your system attack the the tumor. Of course the adage of too much of a good thing isn’t always the best-it’s worth a try though!

 

My dry mouth hasn’t improved much. Carol and Fran witnessed how my speech is affected now. Constantly chewing candies and sucking down water lol. Now that it’s been determined that my bladder has a chronic condition of retention, I have to continue with the medication that causes the dry mouth. I hope the new medication for immunotherapy doesn’t make matters terribly worse-although it’s listed as the first side effect! I don’t know what’s worse for me. Having trouble talking or having trouble swallowing lol!

 

So, the good news is I went 20 days without seeing a doctor lol! And better yet, I have two weeks before I start something else lol! I’m able to eat salads, a medium rare steak, along with sushi now! Yee ha!
 

 

September 14, 2016

 

I have to show you a handmade gift I had asked a friend to make. I needed a quick gift for another friend who just became a grandmother for the first time. I knew Rae could whip up something! Isn’t it adorable? And very special with the baby’s name personalized on it.

 

 

September 9, 2016

 

Doing fine! I came home late Thursday afternoon.  All the test results that came back so far continue to be negative, so neutropenic episode it is.

 

No chemo for a few weeks. The type of chemo I’m on weakens my system too much which doesn’t allow my system to recover enough to get chemo the next week. I go for CT scan end of September and see Dr afterwards. I’ll let you all know what the next step is as soon as I know myself.

 

Meanwhile, I have no chemo for a few weeks and am so excited!

 

September 7, 2016

 

OK, so they're calling it a neutropenic episode.  All tests are negative so far, the low white cell counts can sometimes cause fevers.  They're keeping me another night or 2.  Otherwise, doing OK.

 

September 6, 2016

 

I started running a temp last night so I sorta knew I wasn’t getting chemo today. Instead I ended up admitted to Moffitt. They are checking things out, but it looks like I have a neutropenic fever. A type of fever due to my white blood count being down.  This can cause me to have a high fever and low immunity. I’m now one of the people who you have to put a mask on to see me - at least for a few days. They admitted me for observation overnight so I hope I can go home tomorrow. I hope this goes according to their plan. Otherwise I have to stay in the hospital and finish the antibiotics. They are broad spectrum and should cover almost any bacteria.

 

I also talked to my oncologist. It’s pretty obvious that I can’t seem to get my second dose of chemo. I’m on cycle 6 and I think I only got a second dose one or two times. It’s probably doing more harm than good, leaving me open to all my infections. So we are stopping chemo until after my next CT at the end of the month.  We'll see how that goes.
 

August 31, 2016

 

We’re sitting waiting for Tropical Depression 9 to come in off the Gulf and hit Florida. We have moderate to almost constant rain with no wind to speak of. Last time I looked she will be coming in above us. Seffner should get wind and rain. I’m more afraid for the low-lying beach areas. The usual ritzy area of Bayshore Boulevard that always gets high Gulf waves over expensive real estate with gorgeous houses will always have the money to clean up and rebuild. It’s the elderly who can’t afford to move away or have the money for extensive repairs.

 

Oh wait, you stopped by to see how things are going and not for me to get on my soapbox lol! I’m fine. Chemo was relatively smooth and they even took me into chemo sooner than my scheduled time. We were home by 2:30 I think. As usual, I went right to bed to sleep. I feel pretty good today, right now anyway. Chemo again next Tuesday if my labs are ok.

 

These past few weeks I finished off my Augmentin for the pneumonia I had a few weeks ago. Not soon after I finished that, I had to restart Macrobid for another urinary tract infection (UTI). They found I have urinary retention where my bladder doesn’t empty completely. They added Oxybutynin which works well, but causes extreme dry mouth. It’s so bad I can’t talk or swallow. Scary part is swallowing. Other than yogurt, ice cream etc. I tried a hamburger for lunch and even with small bites I almost choked on it. I have to lubricate my throat with something to drink and be careful taking my pills as one got stuck the other night.

 

The dry mouth is hard to explain. It’s hard to talk. I’ve tried all the sprays, gums, candy, toothpaste, mouthwash there is and I use them all with little effect. While talking mid-sentence my tooth/teeth will stick to my lips or tongue. I can’t go further until I drink water. I can’t drink much more because sodas, acidic juices or iced tea because they burn. Water works best. So exciting lol.

 

Right now we’re trying to titrate the dose to give me the best of the medication without the worst of the side effect. Ideally I’m supposed to take one tablet three times a day. I can tolerate one-half tab three times a day. I think today we’ll try one whole tab and then two halves the rest of the day. It definitely works for the urinary tract infections and we have to get that under control because my body is becoming adjusted to Macrobid and in time it will no linger work for me. I’ll allergic to other medications they use for UTI’s.

OK, that’s it this time around. It’s so wet outside Kaylie won’t go more that two feet outside her doggie door. She’s sleeping at my foot and that’s where she’ll stay until (it has since been named Hermine) the storm is over!

Love and kisses!
 

August 17, 2016

 

Well, good news. I gained two pounds. Losing weight is bad with chemo and cancer. I lost over six pounds in three weeks, thanks a lot! They ask you each visit if you lost 10 lbs in three months, so obviously the 6 lbs in a few weeks is very bad. The trick is to eat small meals often. Yippee! I’m more interested in sleeping! Oh, and cake. Lots of cake. I have to wait 3-4 days after chemo before my glucose returns to normal after they shoot me with steroids in prep for the chemo. After that resolves I can fit cake into my glucose diet :-)

 

Last Friday I also had Port #4 installed and the PICC line removed. Woo hoo! I slept the anesthesia off over 2-3 days. They said they gave me more than my usual because they wanted me comfortable. I was comfortable but terribly tired still/again.

 

I got chemo yesterday! The first time I got chemo twice in a row like it should be since May 31. I’m not sure how it works and I’m afraid to ask, but I’m assuming it’s not good to get one dose at a time, like an antibiotic because the cells are getting used to the chemo. Some things I’d rather not ask.

We have one fuzzy dog! Her groomer closed/retired. No warning either. It’s the only groomer she’s been to. So I picked one off the internet. She’s going on Thursday and having the works! Hopefully she will no longer look like a sheepdog and not come out looking like a pompom poodle!

It’s hot and humid here. Positively Tampa weather. It’s been in the 90’s, but such high humidity it feels like 100+. I think the rest of the country still has it worse than us right now. I’m not outside much except back and forth from the car. As long as the air conditioning is running, I’m good.

Bill took off from work this week. Just for him to wind down some. He’s changed the air filters, finished putting up the rest of the smoke detectors, washed and put a few appliances into the cabinets where I like them instead of on the counters. He’s going to JC Penney to return some towels, and he needs a haircut desperately. Other than that, his orders from me are to chill.

I think that’s it for now. I hope everyone has a nice week!
 

August 12, 2016

 

Quick update - Terri got her new port today and the PICC line was removed.  Have a great weekend!

 

August 09, 2016

 

No chemo last week.  Last Monday I was diagnosed with the common cold.  A few days after my diagnosis of the common cold, I developed a slight case of pneumonia. I have been exhausted more than ever, but am doing ok. In fact, I had chemo today. My CT results shows a mixed bag-some things better, some not. A lot of that has to do with the fact that I get one chemo treatment, but by the time I need the next treatment, I have an infection. It’s been a urinary tract infection, port removal due to cellulitis, a cold/pneumonia etc., so the chemo is attacking some cells. In order to kill off the next batch 8 days later, I need that second dose of chemo, which unfortunately, I keep missing because of infections.

I’m really bad at checking my emails lately and I’m sorry if I haven’t gotten back to you if you sent one recently. It’s because of excessive fatigue from multiple infections. My nurse gave me some pointers to help the fatigue some. Nothing major. Mostly to break the cycle and try something different. A cup of tea, looking out a window, trying to read something, wheel around the house, etc. we shall see.

Otherwise we’re hanging on and Bill is working hard at keeping me happy and Kaylie’s belly full ;-) I did lose a little over 6 lbs in 3 weeks. Moffitt doctors hate to see that. I guess I have to eat more. Most meds to help that will bother my heart or other pills, which might mean the marijuana pill ;) oh boy!, the first in my family to try it (like the first kid to attend college lol). I’m trying to eat more this week and see if moving around stimulates hunger. Otherwise we might try miss happy pill in a week or so.

OK, time for bed. Ttyl. Thanks for checking in!  

 

July 26, 2016

 

No chemo today. Blood work, then 1 ½ hours waiting for labs to find out lymphocytes were too low for chemo. Dr (and chemo?- not sure) next Tuesday.

 

July 20, 2016 - Oy Vey!!!

 

Everything went fine (including finding a vein for labs) until I got to dr. No big surprise but they didn’t like the look of the port site. Ultrasound (to rule out blood clot) and x-ray (for fluid collection). They were negative! Otherwise it would have required hospitalization. PICC line placed instead of port. More risks and more upkeep-dressing needs to be changed at least weekly. I have a tube dangling out of my right arm. Kaylie isn’t going to like it. Bill and I have to switch what seats we have in the recliner so she can’t lick it or snoop around it.

 

 

 

The top picture is of where my port was placed and how after 14 days the port site still looks angry. The bottom picture is what the PICC line looks like.  The dressing has to be changed weekly, even if by some miracle, I don’t have to go to Moffitt that week. It theory, that would be my third week in the chemo cycle, but I usually end up there anyway LOL!

 

I actually found myself thinking oh good! They’re going to admit me! Puppies and room service LOL! Until I recalled it would probably mean surgery. Well, at least they have one of my veins in their possession, all ready to go!

 

Other than that, we’re good. Bill’s joints, back and across his abdomen are hurting him. The back is his regular ups and downs, but the joints and right muscle pain is new. He’s not sure what he did to annoy it. Probably doing his back exercises he moved wrong and annoyed something.

FYI-we left the house at 7 am and I finished up shortly after 7 pm. Got home around 8, ate something, and Bill and I went right to bed, exhausted!

 

Okie dokie! Feel good out there! That saying of “at least you have your health” is so true!

 

And now for something completely different...

 

Our Ring Video Doorbell detects motion and this little visitor keeps causing it to ring!

 

July 13, 2016

Didn’t get chemo. Not until it heals where they removed the port. Probably next week. I’m worried about the port area healing. Been a week but it’s still red and sore. Yesterday it looked and felt better, but today not so much. Will call doctor tomorrow if it’s not better.

Summertime in Florida. Thunderstorms every day. Sounds like it’s in the house when the lightning strikes and thunder rumbles. Hot and humid. How many more days until Winter? Poor Kaylie has to sit on momma!
 

 

July 8, 2016

I’m out! I was released around 5 pm Thursday. They never found another vein. On Wednesday alone I had at least 10 people try at least two or three times each. They even brought someone from the DRC-which is like their ER. He came up so sure of himself and left with his tail between his legs lol. They were trying up until 1am, when I was due for my next bag of vancomycin. Luckily, I’m not squeamish or give them a hard time. Usually I’m joking with them-if I’m awake. Usually that does wake you up though! lol. The nurse called the on-call doctor and told them they couldn’t access my veins. He’s asking her really?! She told him how many times they tried and he still said can someone else try? He finally ordered a pill. After the third or fourth nurse, everyone else doesn’t want to try. They know if they can’t feel the vein why try.

 

The reason I have no veins is because they can’t access my left arm because of the lymphedema (since 2010). They can’t take blood pressure in that arm either. It can cause infection or blood clots or worse. So they only have my right arm to work with. Every blood test since 2010 has been in my right arm. Getting multiple series of chemo (2010 for breast cancer, 2013 for my leg tumor and now) makes the veins very sensitive and thin. That’s why I had a port. And why I love my port-when it’s working! A new port will have to be placed after the infection is gone. About 10-15 days, hopefully. Meanwhile no chemo as long as I have an infection. A PIC line couldn’t be done. Infection on one side and lymphedema on the other.

 

So, we caught the infection very early. The tissue around it was holding fluid but didn’t start producing pus or anything nasty. They create a pocket in your chest muscle. So they cleaned out the pocket and stitched me up.

 

I had two visitors yesterday (besides Bill because he always comes every day). Lynn was nice enough to stop by for a bit. If they had the paperwork done she could have taken me home but I told them not to rush because Bill had a conference call at 3 he needed to be on, so I told the nurses not to rush in getting me out of there.  So about 4 pm I was trying to nap before Bill came and someone knocked on the door. One of the therapy canines and his owner Linda was coming thru. I was so excited! Sometimes it’s a big dog but this time it was a small dog! I love small dogs lol! I wish I had a camera then. Rocky is a Pomeranian. He was about 12-15 lbs and 9 years old. He cuddles me in my bed and laid down and got belly rubs. I did feel like I was cheating on Kaylie! Linda was shocked. He watches her and won’t stay if he can’t see her. So she stood a little behind my head so he could see her. He put his head on my pillow and started to nap while being petted. When it was time to go she brought his scooter over and was shocked that he didn’t jump right in. He went to the bottom of my bed and laid down like, no ma, I’m staying lol! I truly believe dogs know how sick a person is. He was amazing.
 

Moffitt also implemented something new. They do room service for meals. You have a menu and you call about 45 minutes before you want to eat. A dietitian checks out what I ordered and allows what falls into my diet. Of course I can’t order cake, but I get the sugar free hello lol. For diabetics-because I get steroids before chemo and that raises my blood glucose-I’m back on that merry-go-round. So far it’s working well. Not as much waste, food that comes hot and ready and exactly what the patient wants. I was very impressed. Of course I did pick the turkey breast the first night. It didn’t say anything about it being Cajun. Way too spicy for me!

 

So I’m catching up on lost sleep. I swear there was a line of people outside my room that would wait 15 minutes after the last person left, before another would come in. 24/7. Every day lol. I was so tired I went right to bed and slept til 3 pm today!

 

Well I think that’s it. Hopefully I’ll get rid of this infection and start chemo again soon.

July 6, 2016

I’m in Moffitt. I was admitted yesterday. My port was red and swollen and hot. Before it got really bad and infected it was removed. Right now I’m here until the cultures comes back and they know what antibiotic to give me. They have me on a strong one (vancomycin) until the final results come back.  Meanwhile I’m hoping I get home by Friday if not before.

Since they took out my port, which was direct access to my blood vessels, they can’t find a vein for an IV. My veins have been bad way before but chemo makes them very delicate and years of sticking me has created lots of scar tissue. Yesterday they found a vein but today it got blocked so we’re back to square one. I’ve had several attempts, but no success. Eileen, Sue, Nick, Warren and Leeann have all tried multiple times. Even trying to use an ultrasound machine...

 

I need more antibiotics by 1 AM. Chester Cheetos! Wish me luck!!

June 28, 2016

 

This is a picture of Kaylie holding me hostage to play with her.  Although, she's so tired from bouncing off the walls when Carol got here, she's falling asleep on my hand!

 

This week is an off week.  I'm at my lowest immunity this week and my mouth and throat are raw and sore.  That's a side effect of the chemo.  They gave me something called Magic Mouthwash.  It works, but tastes horrible!

 

Hope everyone has a great 4^th of July!

 

 

June 23, 2016

 

So the picture is Kaylie during a thunderstorm. It doesn’t bother her that I’m in my lymphedema sleeve or that she’s sitting on my diaphragm. She just knows the noise and light show scares her!
 

OK, week two of chemo, 2nd edition lol. Although the place is full, I don’t have the entertainment I had last week, which is OK, that’s not a complaint.

 

This past week has been a fever (Thursday to Saturday), urinary tract infection (Thurs) and a yeast infection on my leg and foot that drives me crazy. I have a cream and got another pill for that.
 

Usually I go to lab, then see doctor, then go to chemo. It was reversed today. I went to lab, then chemo, then doctor. I like it better my usual way because if you have chemo last, you know after sitting for your 3-4 hour infusion that you get to go home and sleep it off. This time I had to go to the doctor, sit in her waiting room, then sit in the exam room before I see her. I doubted it was going to be a 15 minute visit, more like 45 minutes. I was right.  We left the house at 6:30 am and didn't hit home until 3-4 pm. That also includes a trip to the pharmacy.

I ate and except for eating and going to the bathroom, I slept until 3 pm yesterday. I’m feeling okay now.
 

Hugs and kisses!
 

June 15, 2016

Started chemo again after missing three weeks. It went ok. Not feeling much side effects but it's early ;-)

At least this time we had entertainment. The woman sitting in the chair next to me was a piece of work. Never shut up. Tormented the nurses. Had them waiting on her hand and feet. They usually ask you when you arrive if you would like a blanket, pillow and a drink. She was asking for a drink, blanket every ½ hour, three pillows all in two hours. She was telling them "you didn’t take my blood pressure" or "check my temp" (yes, they did), aren’t I supposed to get more saline than that? Asking them about if they are doing this right or that right. The nurse got mad and said honey, you are not by far my first rodeo here LOL! Then she would tell her husband go get me that nurse, I have a question for her (they come back and forth every 10 minutes, just wait your turn LOL). The question was needless. Oh, and on top of all this, she kept saying my nose itches. My nose itches. Nobody had a Q-tip (I don’t think she tried to blow her nose). Someone thought of a spoon (? I’m just repeating what was said). I think they would rather stick a knife up there by then. I’m glad we finished when we did because I couldn’t take it much longer. When we left she was still complaining about her nose. Oh, and her husband kept asking “can I leave now” so he could walk around the hospital to get away from her. I told Bill I don’t ever want to hear I’m not a good patient LOL!!!
 

So far I’m feeling ok. It can change at a moment's notice though!
 

Thanks for stopping in and checking in on me! Hugs and Kisses!

 

For all those fathers out there, Happy Father's Day

 

 

June 07, 2016

So far, all the testing from the bronchoscopy is negative, both for bacteria and fungal infections - this is a great thing. It means that the cavity is not a bacterial or fungal infection and that the chemo actually destroyed some parts of the tumor that was growing. It also means that I’m back on the chemo routine.

We also had tropical storm Colin breeze on by. Lots and lots and lots of water. Bill had to empty water from the pool a couple of times.  As much as we saw it wasn’t as bad as what parts of Tampa and St Pete got, so we aren’t complaining. More wind than what we’re used to, but more like wind from nor'easters in NJ. We had some high gusts, but nothing came undone with the house. Everything stayed where it belonged. We had rain for two days. Plus a few thunderstorms, which meant Kylie slept between her mom and dad for a few nights! She just hates thunderstorms. Nothing scares her as much as they do. If one comes thru during the day she sits on my chest and lays down. And I go ahead and let her! I’m such an easy touch! But I owe her. She keeps me company on chemo days or when I’m just so tired.

 

We missed a wedding in the family. Our nephew Brian married his beloved Melissa on June 4^th in NJ.  Unfortunately I was not up to travel so we couldn’t be there. Pictures are gorgeous (Bill will see if we can get a couple to post) and we were told it was lovely day. Wish we were able to be there.

May 30, 2016

My bronchoscopy is this Thursday, June 2. I won't get the results for another 5-10 days later because they have to allow the specimen to grow before they know what it is. The bronchoscopy is to find out if there is an infection or fungus in my lung. The amazing thing is I started running temps again. Temps go away with chemo, but seem to return if I skip a treatment.

Otherwise, I've been very tired and sleeping a lot. So what else is new lol!

Thanks for checking on me! Hugs and kisses!!

May 24, 2016

Rather then trying to remember what the doctor said on by Friday, when I have breaks today I'm going to add a paragraph or so as to what occurred and why. By Wed/Thur/Friday I have trouble forming a thought and its also hard for me to remember anything a few days later. So if this works, you'll hear from me on chemo day, not a few days later. Just read these to the end for the final results.

OK, so back in the saddle again. Chemo today! I missed two weeks, but right now I'm at Moffitt waiting for Dr.

They are holding off on chemo today too. There might be an infection in my lung (or fungus) and my temp is up a little. They think hitting me with chemo this week might make my immune system weaker, esp with the fever. So they emailed infectious disease to see if they could see me this week. I'm now in a side conference room on a great couch (I found this couch six years ago, best one in Moffitt lol) waiting to hear about chemo.

The good news is the CT scan from a few weeks ago show that the tumors are not growing. Maybe more chemo would cause the tumors to actually shrink, so they are deciding to chemo or not chemo.

FINAL RESULT: 

Chemo postponed til next week. Bronchoscopy between now and next Tuesday. Hopefully. ;-) Amazingly, we were still there until 4 pm!! Any longer and we should book a room lol! Wait, a hospital bed is not what I'm looking for!

May 16, 2016

Not much to report. No chemo last week as expected, but also none this week because next week they're going to discuss the treatment plan.  Since I passed my heart tests, they may go back to the original plan of the more aggressive chemo. They just have to carefully watch my heart function.

Tired. Having some issues with shortness of breath. That's sort of scary but not really bad. I think it can be anxiety related.

I finished 300 pairs of pink earrings for October's Pink Walk-a-Thon. My hands are losing their dexterity. I'm also having issues with eye blurriness. I had that issue with chemo both times before. Very frustrating.

I have pain in my neck, shoulders and arms from the wheelchair and need more help getting around.

Otherwise, same old stuff. Bill exhausts me just watching him keep up with stuff. I don't know how he gets everything done at the end of the day. His day starts with emptying the dishwasher, feeding me and Kaylie and builds from there.
 

May 03, 2016

Got labs, saw Dr.

Some answers to questions I forgot to ask before.

I get chemo until my body rejects it or the symptoms can't be controlled anymore (edema, etc.).
Unless they get to switch chemo if my heart results are ok. Then I'm allowed only so many doses of that chemo.
Gave me a different nausea medication. Hopefully this will work better. Side effect-More Fatigue!! Lol

DID NOT GET CHEMO. After waiting until 3:30 my platelets were too low. I go back Thursday. Waiting to hear from them on chemo. Then I do labs, Dr-wait, wait, wait while lab counts my cells, then do chemo again.

Got all that?!
 

April 30, 2016

First, I am now Ivy League! I am now Harvard!! My slides where sent to a sarcoma specialist, Dr. Christopher D.M. Fletcher at Harvard "due to my challenging case" and an "undifferentiated epitheloid malignant neoplasm". Yes, it a sarcoma. And this is what started in my leg back in 2012. With that being said, that's what the chemo is for. At least I didn't need another biopsy.

From my understanding, this has a better prognosis than spindle cell sarcoma-ok, after one search on the internet lol. Why Bill and I don't ask these questions while we are there is beyond me. I guess we're burnt out some. We go over how I'm feeling, suggestions to help me along, what transpired over the weekend, how is the yeast infection. Also problems with lymphedema. Blah, blah, blah. It's really an exhausting day. But whatever. I'm here now so that's good. On the plus side, and this is my own observations, my temperatures are not as bad or lung/rib pains like I did before chemo so I'm taking that as good news. Since starting a heart medication (Carvedilol) two weeks ago I have more energy (but I do still sleep a lot) and I feel more cognizant more often.

This is Maci.

 

 

She's a people greeter at Moffitt. She was very shy with the camera, but was very interested in my teddy bear pull on my chemo bag.

 

 

The same one Kaylie tries to steal when nobody is looking. There was also a yellow mix, who was more interested in sleeping on her mommy's lap, and a westie, who was socializing with others. Maci is sort of the new kid on the block as this was the first time I met her.

Sorry this update is a little late as I like to post something by Friday, but I was having trouble with nausea yesterday and today. It was pretty bad at times-especially yesterday. I don't know about my echo because I was too sick to go to the cardiologist yesterday. I have to reschedule that appointment. Hopefully they will have an opening this week. I'll call them Monday for another appt.

Thanks for checking in...
 

 

April 14, 2016

Chemo went much better this week. My port is working, or seems to be better, as long as they access both ports at the same time, which is what they are supposed to be doing. A double port is still somewhat new and the techs see opening a second line as a way of increasing infection, but the purpose of the double line is that if needed, they don't have to look for another line if the one is accessed (in an emergency type situation or if I have a port for chemo, but they need to give me another shot for a CT scan). Both ports need to be accessed each time to equalize the pressure, or it's too hard for the tech to draw back to get blood. Got all that? Yeah, whatever lol.

We still were in Moffitt from 10:45 am and left around 6:30 pm. Chemo days are long days. As long as I take a nap during chemo, it goes pretty quickly. I've learned to bring earplugs or you can't sleep. Too many machines beeping and people talking. Sleeping thru it is much better.

I came home with a little device on me I named the "Parasite" lol. I need an injection 27 hours after chemo starts to help with my white blood cells. Last time Bill gave me the shots at home. Instead this device (Onpro) is applied to me and 27 hours later it injects it into me. Beats driving back to the hospital just for a shot, or Bill having to stress over it.

So anyway, the nurse injects it with the drug and applies it to my arm or abdomen. She hits the button and it injects a tiny catheter into your body and the timing begins. You feel the injection now and you do feel the catheter move into position. That's when I gave it the name Parasite lol. After the 27 hours is up, it beeps and I think it takes 45 minutes for you to absorb the medication, but you don't feel it then. When it's done, it beeps, tells me it's empty and I can remove it. There is a battery and the catheter, which is very sharp, so they send me a pod in the mail to return it to a proper place to dispose of it. It's really amazing!

Otherwise I'm coming up on my 14-21 days after chemo starts when my immunity is at its lowest, so I have to be really careful about not coming in contact with anyone who is sick or have been around sick people, plus watch that all meat is thoroughly cooked, no fresh vegetables, no raw eggs (wasn't gonna happen anyway lol) etc.

Thanks for all the good wishes and support! Never give up, never surrender!

 

April 06, 2016

I'll give you a quickie on yesterday's debacle lol. First, my new port is flaky, but I haven't had a port that worked perfectly any chemo cycle I've had. Ok, got my labs with difficulty. Got heart test. Failed heart test lol. I'm supposed to be 50-70% (if you're young and healthy etc), I failed another heart test from Moffitt years ago and saw a cardiologist who said it was fine at my age at 47. Moffitt now gave me a score of 34. Problem is Moffitt tests for 10 minutes when you are laying down for 10 while they access the port-that isn't working. Make that laying down for 25 minutes. Not to mention I've had an exhausting morning. The cardiologist tests for 12 hours and averages. Moffitt just doesn't want anyone caught in the cracks. Okay, I see my cardiologist, and for grins and I'll see their cardiologist too.

Because of this they changed my type of chemo until the other med is it's (very rough on the heart muscles, but they need to start something). The problem with this chemo is I get it weekly. I get chemo the first two weeks, still seeing Dr and having labs done first. Third week I go for scans, but no chemo. Then repeat. I see my cardio on4/12 and their cardio on 4/27. Both will order the same scans, which are a pain in the ads. It turns into an all day affair. They even have you bring lunch or you can go out to eat. It's several tests, with one running about 4 hours. It sucks. I was supposed to go to my cardiologist the day the ac died and we cancelled. I even said to Bill last week maybe I should try moving up my cardio appt. The answer, we know now, was yes. He said to see what Moffitt said. Oh well.

Ok, so they where supposed to start chemo at 4:30-they even moved it up to 3:30. They couldn't access the port. They ordered a drug that helps but it takes an hour for the pharmacy to get it to you. They had to do this twice. The chemo-one took 90 minutes, another 1hour, 45 minutes. We didn't leave until 9 pm.
 

April 04, 2016

While I sit here waiting for Bill to finish work so he could shave my head, I thought I'd tell you about a trip we took last week.

Our goal was to find a place with a nice view and a balcony to sit and watch nature or a nice garden so we could read and relax before the poop hits the fan.

I had Marriott Rewards points that we earn when we stay in Marriott hotels. I looked up my points and from what I could tell, I could stay at one of the following:

• A small hotel on the side of the road with a view of strawberry fields for 7 nights

• A medium-sized hotel on Route 60 facing a hot parking lot for 6 nights

• A larger sized hotel in Tampa, which is sort of a tease since they have theaters, aquariums, shows etc., but I'm afraid I'm too ill to partake but that's around 4 nights

• Or being that we live in Tampa we have resorts! Saint Pete and Clearwater have Gulf views!

Now we're talking! I can be in a room with a garden view for 3 nights, an ocean view for two nights, or a presidential suite for 15 minutes, but please don't use or touch anything Mrs. Yavit!!!

OK, we decided on an ocean or garden view. All was well. Beautiful hotel at the Vinoy in St. Pete. I call to confirm that the room is ready, handicapped accessible with a view. Yes. I have a view of the tennis courts. Wait, What!!! Tennis courts? Where is my garden view? Now I'm sure lots of people would love to watch people play tennis! I can only assume people who play would like to watch too. I'm sure it's not as thrilling as playing yourself or watching pros, but not for us. They could not move us. So now in less than 24 hours we have no place to go.

All that was straightened out with a sweet, patient Marriott 1-800 person who after 15 minutes found us a place in Clearwater with a Bay view!!

We had a nice relaxing time with the exception that my temperature did not behave, reaching 103°F. Luckily a bottle of Tylenol is never far from me. I also had a slight cough due to a very high pollen counts, and that ended up causing a lot of rib pain.

Perfect timing!! Bill just finished for the day. Time to get my head buzzed!

 

March 27, 2016

For those of you that are not yet aware, the cancer is back, in my lungs this time.  As many of you know, I've been fighting fevers and fatigue for years.  My last 2 PET scans revealed first 1, then several nodules in my lungs.  While my oncologist didn't feel that they were cancer, based on the PET report, she wanted me to see some specialists regarding the fevers and fatigue which led to me having those nodules looked at.  Between December and January, it was determined that these nodules were in fact cancer.  All of the pathology reports have said that they are undifferentiated.  Like a smudged finger print, they can tell what finger it was, but not whose.  That basically means that they can tell that it is cancer, has many of the characteristics of Sarcoma (completely separate type of cancer), but haven't yet been able to determine which of the 60+ varieties they are. 

 

Neither of us feel that there were any mistakes made at any point in my treatment.  We both have the utmost comfort and trust in all of the teams that have treated me through the years.

 

Based on these findings, they're reviewing the tumor that was in my right leg.  While both biopsies of that tumor showed breast cancer, it is possible that it was actually Sarcoma.

 

There's no cure for Sarcoma, so the treatment plan is based on the goal of arresting any further growth or spread.  I start chemo on 4/5, getting 1 dose every 21 days.  After the second dose, or cycle, they reevaluate the tumors to see if that particular drug is effective or not.  If so, we continue.  If not, they'll adjust the treatment.

 

We're trying our best to remain positive, but we also know that the long term prognosis is not good.