March 20, 2015
 

I haven't been able to go to physical therapy for about two weeks. I have been fighting a temperature for over a month now. At first it was low grade and not interfering much, but it started to go higher and its leaving me tired and lethargic. Every one of my doctors seem to focus on something else but to date, we don't have an answer.

My doctor took blood work and she thought my port might be infected. I had the port taken out this past Wednesday and I am sore in the area but no longer need ice packs. The bandage comes off tomorrow. They were supposed to culture the port and see if there was bacteria on it. If so, they would determine what kind by doing a culture. Once they know what kind of bacteria (if there is any) they would know what antibiotic to give me. That can take up to a week or more to figure out because it takes a while to grow the specimen.

In case you never heard of a culture, let me explain. In order to culture it, they rub the port with a sterile thin stick, then rub the tip onto a Petri dish with a growing medium on it (food for the bacteria), store it in a warm, dark area then check it for growth. After certain timed checks they will eyeball it for fuzzy or discolored growths on the dish. These timed checks might be at 12 hours, 24 hours and even one week later, depending on what bacterium they think might grow. Every bacteria takes a usual course, but different from each other. They put it under a microscope to see what grows. This tells them what bacteria it is and from experience they know which antibiotics kill certain bacterial growths and will, if needed, call in an antibiotic for me to my pharmacy. Meanwhile I watch my temp and make sure it doesn't go beyond a certain point-then I call Moffitt and see what they want to do with me. Although my temp was high on Wednesday and Thursday, it seems to be in the normal ranges for me today. I have my fingers and toes crossed!!

I plan on restarting physical therapy on Monday. I hope my temp is gone by then.
As you probably know, it's very hard to do physical therapy when you're running a temp. Especially for so long. I've sweated more than you cam imagine, overheat while being prepared for therapy since I lay on a large heating pad to loosen my muscles while Megan warms me up with some starting stretches. At this point I probably become dehydrated, even after drinking a lot of water all day, and it's hard for me to concentrate on Megan for the rest of the session. So, for now, I've postponed my therapy. Yes, I'm bummed but trying not to think about it.

Now, about the picture!

 

While waiting at Moffitt for my port to be removed, of course, as soon as Bill's back was turned, I beelined straight to the therapy dogs ;-) My little friend was hiding but as soon as he saw my scooter he came out of hiding and came right to me. His name is Gigolo. He got his name because his mistress/owner goes to work everyday to support him ;-)...so I was told! He is an 11-year-old Maltese who weighs <5 lbs (Kaylie weighs in at 9.2 lbs, for anyone who has held her, for comparison). It was actually like holding one of the parrots I had years back! You could feel his tiny bones, and lots and lots of hair! He got comfy and started to snooze, but unfortunately I had to give him back to his mistress, as I was called for my blood draw. I'll look for him again on my next Wednesday visit. They have different dogs on Tuesday, Wednesday and Thursdays! I would say there are about 25 therapy dogs that are in Moffitt´s posse of doggies now! Someday, maybe we can add Kaylie to this mix! Gigolo didn't start this work until he grew out of his need to run, bark, jump etc., so there is still hope for Kaylie. I would love to be able to do this with her once I'm able to drive and walk!!

 

February 20, 2015
 

Last week we had visitors!!! Guess who was in town??? WOOT WOOT!!
Carol and Jules!! Escaping the snow in the northeast! It has been cold down here but not as bad as the rest of the country.

 

Today it's officially below freezing at night and we'll have this until the weekend!

Well, it finally happened! I've got my leg. Bill only threatened to beat me with it once!
It's heavy and very awkward but I think I reached my first 100 steps! I have such a long way to go. I can't wear it all the time. I start physical therapy on Monday so I can get the best benefits from the leg. It truly is amazing. It's been fitted by the Hanger Clinic, the same company who fitted Winter the dolphin.

I can wear it for an hour or so right now, not walking the entire time. Maybe about 10 steps or so and a few exercises. They will really abuse me in PT! I can't wait though! It has computerized parts. The knee I guess is what you would call the brain. It takes a lot out of you!! A lot of work but I'm very anxious to get started.

I'll keep you posted on my frustrations and high points! Thanks for checking in!
 

 

February 5, 2015
 

Well, last week I got to see and touch my prosthetic, but it's out for alterations now. This week my leg man, Paul, is on vacation. I go in Wednesday, 2/11 and unless it needs more alterations, I get to bring her home. However; I'm not getting excited about this anymore. It just ticks me off more when I leave there without it!

Meanwhile, since that fitting, I've been in more pain. This pain is in my knee, thighs and hips. From what I surmise, I believe this is my arthritis acting up. For lack of anything else I can try and keeping in mind that I'm already on major pain medications and the goal is to get me off these, not increase them, so we're trying ibuprofen. I have a side effect to aspirin and anti-inflammatory drugs and this is bleeding. It can be pretty intense, usually starting with nose bleeds. In the past it has led to nasal packing (which is just as awful as it sounds!). This also caused great anxiety and panic attacks. This is common with nasal packing because you can't breathe thru your nose and your body and brain fights this feeling. Packing usually lasts for about 48 hours and is taken out by an ENT so, if needed, they can cauterize you if you continue to bleed. It makes for a terrible week! Well, anyway, I'm starting very slow, one low-dose ibuprofen tablet a day for several days/weeks and hopefully; relief from my pain with no bleeding complications.

Other than that, Kaylie has an ear infection. This is actually the worst issue we've got. Have you ever tried putting in ear drops in a snarling, biting, mean, ferocious little dog? I think this might be worse than nosebleeds! After she's done with us we have to go into the corner and lick our wounds. She's fine-she's just playing with her ball giving us shit-face. In case you don't know, shit-face is much worse than stink-eye!

Hope all is well and we wish everyone a Happy Valentine's Day!

 

January 25, 2015
 

I was measured Wednesday morning and should have my first leg, of many, by the end of the month! The interesting part is as long as insurance covers it, it will be with a computerized knee. It will have sensors in it to know if my foot/body is lined up on flat ground and/or irregular ground or things like a curb. It's all very interesting. I seem to learn more with each visit. I'm also going to request a script for physical therapy. Not that anyone wants to sign up for it, but understanding the device and learning the best way to use it will prevent falls. It isn't convenient, we'll be going either daily or three times a week for several months. The ultimate goal is to utilize the leg as often as possible.

I've had issues with where I go for my leg, about not getting regular appointments, the right supplies, etc. I was concerned and almost changed where I go, but my doctor contacted them and I'm being seen by the center manager now.

As for the vessel in my eye. After follow up with an MRI and a PT scan, the eye specialist recommends no further testing at this time. I'm to follow-up with my regular eye doctor unless something changes, either in future exams or my eyesight.

It has gotten colder down here, then warmer, and expecting another cold front this weekend. In the news the other day there was a report about the time Tampa got about 2-3 inches of snow in 1977. They showed video and it was so cool. Even adults where sliding on pieces of cardboard (in Florida it's not like you pull out your sled) and doing snow angels. If you lived in warmer climates and don't know what a snow Angel is, come on over and I'll demonstrate one lol!

GOOD NEWS!
Although my oncologist can't say 100%, she does feel that since the cancer has not spread and after several radiation treatment sessions and at least 3 more types of chemo over a year was pumped into me, that I won't die of cancer in the 3-5 year prognosis given to me 2 years ago. I am an enigma and she isn't 100% sure but it seems I'm not going anywhere anytime soon. In fact, for that Dr, I don't have to see her for 6 months, unless something comes along in the meantime.

Unfortunately my prosthetic guy and/or PT will be seeing me several times a week for the next six months. I also see my regular GP and surgeon on a regular basis until we figure out my knee issues-probably shots, regular port flushes at Moffitt etc.

 

U win some n u lose some.
 

January 07, 2015
 

Happy New Year!!!!

I'm tired and I have my days and nights mixed up again, but doing well. Some pre-cold or bad allergy symptoms for days now though and its also taking a toll on me. Putting Christmas stuff away etc. Well Bill is doing most of that. I'm trying to do something during the day. Something light and quick but I guess I overdo and my hips, leg, left knee are all taking a toll on me.

I looked up my MRI scan and according to that, there is no tumor on my optic nerve. I see the specialist in a few weeks and find out if there is additional testing or what. I guess they have to find out what the issue is with those blood vessels.

Was supposed to go for my cast today, but wasn't feeling well (see above for the kvetching paragraph above). Had to reschedule and I go back on 1/20. Not like me to cancel but I just couldn't do it. No energy at all.

One of you (thanks Ruth) asked about my mobility around the house and everything else so I thought I'd fill everyone in because unless you are here to see it, it's hard to understand. I use the wheelchair mostly inside the house. Luckily we are all one level. We got a doctor's office stepstool for me to get from wheelchair to bed. I sit in the wheelchair, put my foot on the stool and raise myself up by pulling on the relational tall handle until I can stand on stool, then I gracefully (ha!) plant my butt on the bed and swing my hip into the bed.

I sit in my wheelchair right outside the shower door, stand up and pivot until I can sit back on the shower bench that's already in the shower. The bench has buttons that lets me turn the chair manually to face the shower. Likewise, between handles in the shower stall and grabbing onto my locked wheelchair, that'd how I get back into the wheelchair after I'm done. I'm now able to do this without Bill's help, but he's a scream away if I'm stuck lol!

If I need to get someplace and the wheelchair doesn't fit, that's when my walker comes into play. We have a water closet that the wheelchair cannot fit into. I use the walker for 2-3 hops to reach commode. I need both the walker and wheelchair to get up/down steps. I sit in wheelchair on edge of step, stand up and hop off/onto walker to get to lower floor (into garage) and likewise to return to higher floor. Mind you I said step. ONE step!

Outside the home I use walker to hop for about 20 steps to get to car and back. I have a battery operated scooter to use at Dr offices, malls, groceries etc. As long as they are handicapped accessible.

Once I get my leg there won't be as much hopping, which is good because it's taking quite a toll on my stamina, hips and my knee is really bad. I've had arthritis in my knees but this one is starting to wear down. I put ice on it at least once a day. I also use a brace on it. In time I might need an outpatient knee procedure to get fragments of chipped bone out of it to stop the pain there. Once I walk on both my legs this will cause blisters, etc. where the stump goes into the socket and the mold will be changed again and again until the socket is perfect with no blisters or sore spots and then it will be made into my permanent leg. I'm not sure how true it is, but I was told a prosthetic leg costs about $38,000. We're so happy we have insurance, no matter how poorly they pay!

I will carry extra things for my leg thru out the day like padding and extra stump socks. As the day goes on my leg will shrink by being in the leg socket and I'll gradually pile one sock onto another to keep that stump to socket firm and tight or my leg may easily fall off and my risk for a fall is greater.

Any other questions I can answer just let me know. It's putting it into words to describe it that's hard. I hope this explains a lot :-)