Friday, November 30, 2012

Quick Update, Imerman Angels, & Ice Cream

A quick health update:  The skin infection is much better according to the plastic surgeon. I have to call him on Monday to report on how things are doing  to find out whether I'm actually cleared to have chemo on Tuesday, but he thinks it is likely.  I'm  waiting on word from my oncologist on the blood culture and the revised petscan as well, but I still have been running a low fever.   In general, I don't feel  bad, but the 12 days of a fever are starting to take a little bit of a toil on me.  At this point, they are just wondering if that is how my body is responding to the chemo versus it being something to really worry about.

If you know anyone going through cancer or a family member/caregiver that is helping someone with cancer, please let them know about the non-profit organization called Imerman Angels, A friend told me about them about a month or so ago. (Thanks Jess!) They provide one on one support for both cancer patients and caregivers/family members by connecting them with a mentor in as close of a situation to theirs as possible.   I was connected with a cancer survivor/mentor a couple of weeks ago, and it is really helpful to know that there is someone to talk to who has been through my same diagnosis and treatment.  Having a support system is such an important part of fighting cancer, and I think this is such a great resource.  Please pass the word on about this organization!

If you live in the Tampa area,  please come out for some ice cream on Tuesday, 12/4 at the Carrollwood Cold Stone Creamery on North Dale Mabry between 4-8 pm.   I am blessed to have some long term friends from middle school/ high school who have put together this fundraiser, and I appreciate it more than I can even begin to express.  Some of the items donated include 2 tickets to Sea World, Derrick Brooks Autographed football, Phil Esposito autographed photo, Gator Golf set, over $1,000 in salon treatments and more.  If you can make it, please come out and enjoy some ice cream!

Tuesday, November 27, 2012

Partial results but promising

I was all prepared to get my petscan results today at the oncologist.  When my oncologist came in, she had to share the news that we only had partial results right now.  My original scan was done at a hospital, and yesterday's scan was done at one of my oncologist's offices.  Unfortunately when the hospital sent over the disc of images so that they could be compared..... it was blank. (Yes, this is exactly my normal type of luck, I know!)  Without the comparison, we don't know for sure how the number or sizing of lesions compare.

In a petscan, the oncologist said we are looking for 3 things that are positive signs: areas have disappeared,  have shrunk, and/or  the uptake value has reduced.  The one thing that we do know is that the uptake has reduced which is at least promising. (For those with medical knowledge, I apologize in advance as I probably butcher this explanation).  In a petscan, they inject you with a radioactive tracer that goes to areas of higher metabolic activity such as cancer, and then those areas get assigned an uptake value depending on how bright they are, etc.  A normal liver has a standardized uptake value (suv) of 2-3.   In my original scan, all of the lesions had an suv  of between 6-13.  In this scan, all of the lesions were between 4 - 6.1 which seems to indicate that things are promising and going the right direction.  I'm just being cautiously optimistic until we know for sure how everything aligns with that original scan and that there are no new places, etc.    Another disc was requested, and my oncologist will call me once she receives the amended report.  Once we have the whole picture, I will feel a lot more comfortable!

I'm still dealing with the low fever and some signs of infection.  I will see the plastic surgeon tomorrow late afternoon, and hopefully, the 3 days of the new antibiotic will have begun to work their magic.   I am also waiting on a blood culture just to make sure that the infection we're dealing with isn't in the blood, but in general, the oncologist seems to think that I feel too "good" for that to be the case.  I have to agree with her.   I've got the fever headache/neck ache, but other than that I don't really feel bad.  Please continue those prayers that the infection will go away quickly and without requiring any additional surgery or anything like that.    I appreciate so much the prayers, cards, messages, and thoughts!  They mean so much, and always brighten my day!

Sunday, November 25, 2012

Frustration & Infection

This past week, I've battled a fever that would come and go, primarily flaring up at night.  On Tuesday night, I had an earache so it was assumed that it was the cause.  It seems during chemo my body shows the fever, and then 24 hours or so after, I finally get some clue as to what may have caused it.  The oncologist had given me antibiotics on Monday when the fever first began so we thought I was in pretty good shape.  Though my temperature had gone high the night before,  my temperature was controlled on Thanksgiving Day so I was able to still enjoy the day with family, even though it got worse again that night.

I got about a 36 hour reprieve with no fever, and then it came back again last night.  This afternoon, I realized that I again was showing signs of a skin infection and having some problems at one of the surgery sites.  The plastic surgeon changed my antibiotic, and hopefully, we can get this under control in the next 48 hours.  If not, he is concerned that we may need to do surgery to remove the reconstruction as the concern is that the infection has gotten into that.
Besides the worry about a more serious problem, I am frustrated because it pushes back chemo for another week. That puts chemo going into the new year, and I had really hoped to be done with this part by then.  I know that it is not safe to have chemo when things like this are going on, and so it is for the best, but I just really need that light at the end of the tunnel.

I have my PETscan tomorrow, and since it is at one of the offices of my oncologists, they will also be doing blood counts and a blood culture to ensure that the infection isn't in the blood.  I know that infection is a normal part of the whole chemo process, and I won't be the first or last to go through all of this.  I'd just really appreciate thoughts & prayers that the antibiotics work and the infection stops before we have to resort to surgery or anything like that.  If you could also pray that the PETscan results would show that it has stopped growing and/or shrunk, I'd really appreciate it.

Tuesday, November 20, 2012

Thanksgiving Week

I got to begin this week with a couple of visits from a friend from Alabama.  Even though I was having to be careful with my counts, she was able to stop in for a few hours on a couple of different days, and it was wonderful to see her.   I am so thankful for long-time friends that you may not see very often, but whenever we do get together, it is like no time has past at all.  

This treatment cycle has had a few hiccups, but generally has gone okay.  I began to run a fever on Monday afternoon, and the oncologist called me in an antibiotic.   Today, I had my bloodwork done.  I am pretty low on white blood cells, but thankfully, just above the "danger zone" of neutropenia.  I've also been anemic, and the oncologist has been concerned with that. So, today I've gotten an iron infusion to hopefully help there.  Fatigue has been pretty strong this cycle, and I hope that the iron will help.  I was warned last night about the infusion, but I wasn't aware of what a long process it would be.  I've been here 4 hours at this point, and I probably still have about an hour to go.  I wasn't exactly equipped with lunch and stuff to be  tied up quite this long.  Again, I have to be thankful for a good friend who answered the "can you bring me lunch call?" once I realized what a long process it would be.   

Hopefully, the antibiotic & iron will do their jobs, and the rest of the week will go smoothly.  I know that I have so much to be thankful for, including the fact that Thanksgiving falls on week 2 of the cycle so I should be able to enjoy it!  Hope that you enjoy your Thanksgiving!  

Wednesday, November 14, 2012

At the chemo halfway point

I'm halfway done with chemo now that I had my 3rd treatment yesterday.  That treatment was a little rougher than last time, but that is to be expected, I guess.  Each one supposedly takes a little more toll on the body.

My 2nd set of  tumor markers that were taken 11/6 had 1 type coming down which is good, and the other type raised a little bit.  My oncologist wasn't too worried about the rise as the original tumor markers were done 3 weeks before chemo actually started. We don't know how much that one could have risen before chemo even started.  Also, she said a rise isn't unusual since both live & dead cancer cells show up in the tumor markers.

The more important test will be the pet scan that I have in 12 days.  That will show us whether the tumors have grown, stayed the same, or shrunk.  Prayers that they have at least stopped growing, but hopefully shrunk or disappeared completely.    I am already nervous about this scan, and it is 12 days away.  I know that there is nothing that I can physically do to change the outcome of that scan, but I can at least ask for the prayers to continue and the meds to work!

Even after the 6 rounds of chemo are done, I am still facing some more surgeries and what they call "hormonal therapies".  Two months ago,  the oncologist had said she wanted to try some shots and see how I do before progressing to removing the organs that make the hormones completely.  To me as long as those organs are in there, there is too much risk, but I'm not a doctor.  I was very happy to hear her say yesterday that she would like for me to go ahead with the surgery as soon as possible without the shots, and that it would be safe to do within a few weeks of chemo completing.  This way we get the offenders out & can use some better therapies since I'll be post-menopausal.  I have a consult later this month regarding  surgery, and we'll see when they will actually plan it for.    I know this decision wouldn't be for everyone, but with my estrogen+ level in the tumors at 90%, I just don't want to risk any extra estrogen being in the body.   Being happy about having a surgery soon may also sound a little nuts, BUT  it just seemed like the different treatments and upcoming surgeries were making this whole process never-ending with no light at the end of the tunnel. So, this just helps me feel more confident that things will get on an even keel eventually, and we can really see how the cancer responds with that estrogen supply being cut off.

I mentioned some side effects a few weeks ago, and I still have those.  Apparently Levaquin is becoming my new best friend with each treatment as I needed it again today.   I know that I am fairly lucky in the grand scheme of possible chemo effects so far, but I have added a couple of new, annoying ones.  The first is that 6 days ago, my legs/angles/feet apparently decided that they wanted to look like elephant legs and have stayed swollen like crazy. This could be from the chemo, steroids for nausea, or both, but have I mentioned how much I HATE STEROIDS!!!!  The oncologist gave me a water pill, so hopefully that problem will be solved soon.     The other one is also just annoying as I am having crazy weepy eyes.  No eyeliner can stay below my lashes because it ends up streamed down my face, lol.  Apparently weepy eyes can actually be caused by dry eyes.  So, I guess I'm adding eye drops to my medicine schedule.    Things could be much worse, and I am just happy that I'm avoiding most of the  major, serious side effects that could go with type of chemo.

It's been 2 hours so I better do my pre-emptive eating strike so I keep the nausea away.  Hope everyone has a good week, and please continue to remember me in your prayers!

Wednesday, November 7, 2012


Whew! I feel a huge sense of relief!   Yesterday, I did my bloodwork, and thankfully the white blood cells were high enough to not be in that neutropenic danger zone.   I was happy about that, but still didn't feel like I would be really out of the woods & okay with this cycle until the plastic surgeon appointment today.    Thankfully, he says everything is looking good, and I am okay to stay on schedule with chemo for next week.   I didn't realize just how stressed out I had been feeling until after both of those appointments were done.  It may seem silly, but almost every appointment with the oncologist and plastic surgeon had brought some type of bad news, problem, or complication.   I now feel like I can breathe, and hope that this is the start of some appointments with good news and a pattern of things going well.  

The plastic surgeon also finally cleared me to  do real cardio and lifted the "you can walk, but don't sweat" exercise restriction.   I'm still not allowed to do repetitive arm motions like lifting weights b/c of the possible damage to the scars that can come from chemo, but that is okay.  I am SO very excited to be able to get back on the elliptical, treadmill, arc trainer, etc. and actually work out.   I know I may be crazy to care about exercising while in chemo, but it is just one more way of being able to get another little piece of me back.  Plus, my being slightly crazy is not anything new, lol!

Please keep the good thoughts and prayers coming!  I really hope that things will go smoothly, and I'll be able to stay on track for the last 4 treatments.  

Saturday, November 3, 2012

Random Musings

It is 5 am, and I am not sleeping when I should be...... so I figured I would share some random thoughts.

1)Speaking of being up at 5 am,  I really dislike what steroids do to my sleep whether it is low dose like they have me on now for nausea or higher doses like I used to have to be on for lung stuff.   I know that they serve an important purpose, but they automatically send my sleep into a tailspin.  There is nothing quite like spending 3-4 nights where you sleep for 2-3 hours then are wide awake for 2-3, maybe go back to sleep for a couple, etc. only to spend all day tired and then be wide awake when it is time to go to sleep for the night.  On the plus side, I've gone through clothes, cleaned my desk, done filing, and gotten other things done during my wide awake in the middle of the night sprees that probably would have been put off otherwise.   Last night was my last dose so sleep should be coming back to me soon, yeah!

2) My skin and the chemo do not like each other.  The oncologist warned me on Tuesday that it could flare back up and/or that is a side effect for some people, and gave me an antibiotic just in case.  By Wednesday, when I went in for my white blood cell booster shot, I was already having to start that antibiotic.  I'm very thankful she was proactive, and the test will be what happens when I do have the lowest counts in the next few days.  At least, I already have an appointment with the plastic surgeon Wednesday so if it does get worse we can take care of it quickly.

3) Losing your taste is a very strange phenomenon!  Everyone warns you that it will happen, but it is still bizarre to sit down with oatmeal,an egg, or some other food like you do every other morning and it suddenly have no taste at all.  I am not a foodie by any means, but typically, I do like what I eat to taste like something.  Weirder than having no taste is when food actually tastes bad.   I have discovered that anything diet or artificially sweetened tastes like metal, which I could kind of expect since I've always thought they have weird aftertastes anyway,  but even crazier is when foods like pizza taste like metal or just really wrong.  Of course, maybe if my comfort foods like that taste bad then I'll be able to stave off the other dreaded steroid side effect of weight gain.

4) The other thing people warned me about, but I didn't really understand is the heightened sense of smell.   It has only been the smell of a few foods that make me go running for the nearest exit as quickly as possible so far, but it has been a weird grouping of them:   a vat of pickles in a sandwich shop, fajitas, and popcorn.   Two of those three are pretty easy to avoid, but I never realized how many restaurants have fajitas on the menu before.   It will be interesting to see if other things are added to the "bother me list" as I have more treatments, but I apologize in advance if I walk in to a restaurant with you and say we have to change location or go running from the table when someone else's food is brought nearby.

This is such a weird journey, but as long as all of these things are happening, I do know that the chemo is trying to do it's job.   I might dislike some of it, but at the same time, I'll gladly deal with the side effects to get the cancer under control.   Well, I'll end the random musings and see if I can actually fall back asleep for an hour or two now.   Hope everyone has a wonderful weekend!