Are We There Yet?

I had the notion that as soon as I was one week past my last chemo that I would be feeling brand new again and ready to celebrate. In truth, it is just this past week that I have begun to feel some real strength and stamina. What are we now – 7 weeks out? My fingers and toes are still pretty numb and are a constant reminder that my body is still recovering. However, I’m excited to report that I’ve regained complete feeling in my pinky fingers!! It leaves me with hope that the other digits will be returning soon. Fine motor skills like buttoning a shirt or fastening a necklace are quite difficult. The fingernails continue to decay, but I’m not sure if they will actually fall off. The top half of the nails is dead but the nail beds seem strong and are producing new growth. Maybe the dead part will just “grow out” and I won’t ever be completely nail less.

My poor little head is covered with a good bit of fuzz now (most of it grey, unfortunately!) and a tiny bit of hair is starting to crop up on my legs, underarms and private parts (yes – I lost all of that hair too!) I only have a few eyelashes left and something tells me it will be awhile before they return. I wonder what it’s like to wear fake eyelashes? I don’t believe I’ve ever tried them. And even if I put them on they’d probably melt off right after the first hot flash. Man – those hot flashes are a bitch! Mine start at the base of my skull and within an instant my whole head is covered with sweat, which is weird because I have never been a heavy sweater. Like many fine, southern women, I don’t sweat, I dew, so this is a very new phenomena for me! Now I can handle them fine during the daytime, but they sure mess up my sleep at night. Argh – they are so unfair.

I have been trying to exercise as much as possible to rebuild my strength. I get to the gym when I can and try to walk on the other days. I have to say – the exercise feels good and I can tell a difference in my stamina already. It’s always hard to make myself get up and go but I always feel much better afterwards. As my sister-in-law Ruth says, you never leave the gym saying, “That was a waste of time. I wish I hadn’t done that.”

So I’m starting to feel more like my old self, but I’m not completely there yet. The end of chemo was a huge milestone, but I’m just not ready to celebrate. The big surgeries still loom ahead and I am having a hard time thinking about them. In fact, I don’t want to think about them at all. I just want to feel normal again. I want to have hair, and fingers that work, and strength in my legs. And I want those damn hot flashes to go away.

Okay, okay – I’ll settle for 3 out of the 4.

748

The Good, The Bad, and The Ugly

THE GOOD – My taste buds are back! Everything tastes really good to me. So good, in fact, that I find myself overeating at every meal. In fact, I am ravenous! I guess my body is rebuilding and needs the extra fuel. Having whacked out taste buds is really bizarre. It feels like you are chewing food wrapped up in a piece of gauze. Sometimes you can get a hint of taste coming through, but mostly it feels like chewing on tasteless cotton. Other times, it doesn’t taste the way you anticipate or remember the food to be. You put a piece of chocolate in your mouth expecting creamy goodness and instead it is bitter and feels like glue on your tongue! Yes – having my taste buds back is a true joy!


THE BAD – the numbness in my hands and feet is still present. In fact, it may be getting worse. I can hardly button a shirt or put on my earrings. In addition, my nail beds are really sore. I know it’s weird to say I have fingers that are both numb AND sore at the same time, but that’s how it is. I’m thinking it will be a few more weeks before I have full sensation again. The cankles are mostly gone, but I still have some mild swelling in my feet and legs. They are worse at the end of the day, naturally.


THE UGLY – My tummy is way bigger than it used to be! Some of it may be water retention like the ankles, but in general I have gained about 7-8 pounds since I started chemo. It’s not very attractive when your stomach sticks out further than your boobs! Of course they are 45 year old boobs that are racing towards my navel, but still! If my stomach is still bigger than my boobs after the reconstruction – then we will really have a problem! Even my “fat” jeans are feeling snug. (And all the ladies know what I mean when I refer to the fat jeans.) I was considering the surgery where they use your stomach tissue to reconstruct your breasts, but the surgeon says there’s really not enough there for two breasts. (Did he really look at my stomach???) So I either need to start binging so I can grow another breast or I need to get that exercise program going pretty quickly!

Cankles!

What a week this has been. First, I thought I would be through with side effects by now, but strangely enough my legs, ankles, and feet have become really swollen. It’s terrible - I have cankles! After putting up with it for several days I called the doctor to see if it was normal and how much longer I could expect it to last. They had me come in for a blood test and an x-ray to make sure my heart was not enlarged and it appears everything was okay. I’ve been propping my feet up every night and I think it has helped. The swelling has improved, but it is still present. My legs look and feel really funny – cankles are sooo attractive. Oh well - just call me the side effect queen! Ugh -I think I’ve had every side effect possible.

In addition to seeing the doctor for the swelling, I have had four other doctor appointments this week. I saw the eye doctor Monday, a breast surgeon on Tuesday, a pain specialist on Wednesday and the plastic reconstruction surgeon on Thursday. Good grief. I will also see a gynecologist next Monday.

The bulk of my doctor visits relate to the bilateral mastectomy. If you’ll remember, I have been diagnosed with the BRCA2 breast cancer gene mutation. That means I have a 64% chance of developing breast cancer AGAIN by age 70. Furthermore, the gene leaves me with a 44% chance of developing ovarian cancer by age 70. I have decided that these risks are too great and the removal of my ovaries and breast tissue is the best defense. The question now is – how?

There are about a dozen different ways to remove your breasts and rebuild them. So I have a lot of decisions to make. There are different techniques for removing the tissue and different options of rebuilding. You can have a skin sparing mastectomy, a nipple sparing mastectomy, a subcutaneous mastectomy. You can rebuild using implants or you can rebuild using tissue from your stomach, your butt, or your back! You can choose to create a new nipple and tattoo the areola, you can try to save your own nipple, or you can decide not to have nipples at all! There are soooo many options. And of course each option comes with its own set of pros and cons.

I was hoping to have my ovaries removed at the same time as the mastectomy and reconstruction, but the first surgeon has said no to this idea. That means I am facing three separate surgeries – one to remove the breasts and put in tissue expanders, one to remove the expanders and put in the permanent implants, and one more to remove my ovaries. That’s a lot of surgery.

I am only in the information gathering stage so I have no idea what or when this will all occur. I certainly have a lot of decisions to make… and a lot more appointments to attend. I’m thinking of getting a cot and moving into the Cancer Research Center!

265

The First Day

I have neglected to let everyone know that I made it past the fever! I am over the last hump! It only lasted a few days this time and the bone pain was less severe. I had a bit of a melt down Wednesday night as I was sick and tired of being sick and tired. In fact, I've been emotional all week. I find myself tearing up over the slightest thing - a report on the hurricane evacuees, a dead plant in my front yard, a touching act on America's Got Talent (I'm not kidding.)

I'm not sure if it's fatigue, hormones or what. I think maybe the stress of this whole ordeal is finally letting loose. My doctor warned me that I might have some feelings of sadness and she was right. I don't feel depressed - just emotional. I was unsteady there for a few days and I couldn't really tell you why. Part of the emotion is just a big feeling of relief - knowing I have reached the finish line for this leg of the race. Part of it is knowing that you got a scary glimpse of death and that you aren't ready to go there yet. I will save that discussion for another day.

God - I am done with chemo!!!!! I am just now really beginning to appreciate that it's over.

I found I have lost a great deal of strength and stamina. My legs are like wet noodles and walking up the stairs leaves me winded and my thighs burning! How did this happen? I can't stand or walk for very long without my legs starting to shake. In addition, I am experiencing some fairly intense neuropathy in my hands and feet (a chemo side effect) and if I stand too long my feet start to get that pins and needles feeling. I had great intentions of going to Washington D.C. this Monday for a meeting, but I realized that I am just too weak. I'm really disappointed that I couldn't attend the meeting but I don't think I could make it through the airport without collapsing. I took a trip to Wal-Mart on Saturday and had to take a 2 hour nap when I got back! It's gonna take some time.... and exercise.... before I regain my strength.

I was pretty weak Thursday and Friday but I probably could have made it to work for part of the day. I decided that I needed the time for myself instead. I did some short errands and tried to reclaim my house from the mess that has piled up during my last recovery. I unpacked the suitcase that has been sitting on the floor since my hospital stay. I did all my laundry and put it away. I did all the things I need to do to be ready for work on Monday. It is time to start back on the path to normalcy.

I have to tell ya, Monday feels like the first day of the rest of my life.

Here we go....

072

Still Here

So here we go again. The low grade fever continues. I went to the doctor's office for a blood draw and chest x-ray and everything checks out okay. I got sent home with antibiotics to wait and see what happens next.

I hate the fever. It makes me feel rotten. Maybe I am just a big baby, but the minute my temperature goes up I feel like the world is ending. I'm uncomfortable lying down, uncomfortable sitting up. I don't want to talk, I don't want to move, I don't want to be awake. Do other people tolerate it this poorly?

Ahhh... but I have the percocet and they do make me feel much better.

Just a few more days and this will all be gone. Just a few more days and this will all be gone. Just a few more days and this will all be gone. Stay tuned.

Recovery Road

Thanks for all your comments!!! They have definitely helped! This recovery has been going smoothly and I have been feeling decent - until today, that is. Today I have that pesky, low grade fever. And there is a small cough. Sigh. I will call the doctor Monday morning to see what she says. PLEASE, PLEASE don't make me go to the hospital again.

More later....

Who's Counting?

Following is a list of side effects I've expereinced after the last chemotherapy infusion. I'm making this list for myself - as a way to remember.

1. Bone pain, bone pain, bone pain.
2. Tearing, watery eyes
3. Runny nose
4. Oral thrush
5. Yeast infection
6. Lost of all taste (How I long to enjoy a simple glass of water!)
7. Sore nails
8. Indigestion
9. Other tummy troubles
10. Phlebitis of the arm at the site of last infusion (a rash/burn along the last vein used)
11. Hot flashes
12. Fatigue/loss of stamina
13. Mood swings

Pain Free

I am pain free today! Ahhhhh.... it feels so nice. I hope I am never a sufferer of chronic pain - I don't think I would make a very good patient. I hate to be such a complainer - but the bone pain I've been experiencing is awful. You can't get comfortable no matter how you sit. It's a random, roving pain that is sometimes throbbing and sometimes stabbing. It's mostly in my knees, hips and legs, but no bone is immune. I feel stiff and sore like a 90 year old lady with arthritis. The pain meds certainly take the edge off, but then I feel sleepy (and constipated!) I was so frustrated with the pain yesterday morning that I sat in the bath tub and cried! And today it's gone; it left as quickly as it came.

While I was in the midst of all the pain the thought of having one more infusion felt like an overwhelming task that I could not accomplish and left me depressed. So I started thinking about the celebration I would have after recovering from the last chemo. Now we're talking fun! Maybe a BBQ picnic with lots of food. Or maybe a more elegant affair at the house with fancy finger foods and a hired bartender. I may make you wear a funny hat, play silly games or learn a new dance. I have lots of different ideas... but basically I want to have a huge party and invite people from all walks of my life. I won't spell out the details now, but just know that it will happen and you are all invited when it does! It gave me pleasure to think of something fun - of an end goal - and it made the time pass a lot easier. I also found working on a crossword puzzle while waiting for a pain killer to kick in is good distraction!

I made a "practice run" to work today. I'm overwhelmed at all there is to do there. Anyone reading this who works with me - please be patient a little more. It's hard to get re-started. I've been out almost three solid weeks now. My friend Leslie suggested I start by making a list. Number one on the list should be "Make a list." Then after you add four or five more items, you can scratch off number one on your list! Immediate accomplishment! Think I'll try it!

Okay - better get to that list. People are waiting... Just wanted everyone to know the pain is gone and I am working on rebuilding my strength and stamina.

Just ONE MORE TO GO. I can do this!

445

Hanging On

Hanging on and still trying to recover from chemo #5. The great news is NO FEVER. Every bone in my body hurts and I have no energy - but as long as the fever stays away I can tolerate the rest. Thank goodness for the percocet - it dulls the pain and allows me to relax.

Hoping I'll be on my feet in another day or two.

More Details Than You Ever Wanted!

I saw my doctor yesterday regarding my continuing treatment plan. We will never know exactly what caused my fever. It was either a reaction to the chemo drug, Taxotere (a highly unusual response), a virus (which seems unlikely for 8 days and that occurred before my white count ever dropped), or a reaction to the Nuelasta shot - which helps to rebuild your white count after it drops from the chemo.

The doctor suggested the following options listed here in order of her preference:

1. Do taxotre again without the nuelasta shot. This leaves me with a 1 in 3 chance of winding up neutrapenic (low white count) and thereby vulnerable to infection…. And infection would put me in the hospital on iv antibiotics again and be potentially life threatening.

2. Do taxotere again and instead of the nuelasta, I would take nuepogen shots daily for 10 days. Nuepogen is the short acting version of nuelasta. So if I start to have a bad response again, we could stop the drug and it would be out of my system in 24 hours. The down side - daily injections in my tummy:(

3. Go back to drug #1 which we know I can tolerate well. This option is about 2-3% less efficacious as option one, but has less dangerous (and more tolerable) side effects.

4. Quit. She says 4 sessions (which I’ve had) is the minimum standard. Less than 4 is not efficacious, 6 sessions is more efficacious - by maybe 3-4%.

I have agonized over this decision the last few days and have not been able to concentrate on work. (I am performing so badly at my job right now. I feel terrible about it.) I have been really emotional about the decision making and I keep tearing up every time I try to talk about it to someone. It's kinda hard to have a productive conversation when you are crying.....

So... stopping is not an option. Yes - days out of the hospital I was frustrated and tired and said I was ready to quit. I have some perspective now and know that I want to keep going. Yet - I HATE the idea of winding up sick in the hospital again. I was miserable! On the other hand, I don't want to have a recurrence 3 years down the road and live with the regret of not having tried the most effective treatment because I was afraid of 10 days of fever, bone pain and a trip to the hospital. Hmmmm.... 10 days of illness vs. years of life on earth. The answer is becoming clearer now.

I finally pulled it together this afternoon and have decided on option #2 - Taxotere with the daily nuepogen shots. I want to know that I did everything that I could to prevent a recurrence. I want to pursue the most effective and aggressive treatment that has the best statistical outcome.


To do Taxotere without the Nuelasta comes with a risk of life threatening infections that I'm not willing to chance. To do it with the Nuepogen shots comes with some additional pain and hassle and still the possibility of fever and bone pain - but it is not life threatening and allows me the option to stop if my blood counts are okay and the pain is too bad. I will still have to play the game of checking blood counts and cultures to make sure the fever is not indicative of an infection. I could very well end up in the hospital on IV antibiotics again if the fever doesn't abate quickly. But overall it feels like the safest way to reach my goal.


God I hate making decisions like this!


So the infusion is Thursday morning at 10:00 a.m. Ben will have to get instructions on how to give me the shots. At least I can do them at home vs. a daily trip to the doctor. I also got daily shots in the stomach while I was in the hospital and they didn't hurt. It just sounds awful because I think we all grew up with the horror stories about what would happen to you if you were bit by a dog with rabies! Our parents used the threat of 10 days of stomach shots to keep us away from stray mutts! Am I right? Although the shots don't hurt -they leave one heck of a dark black bruise. I will have a very colorful stomach!


So wish me luck. Not sure what the next week will bring or when I will feel like posting again. Please send positive thoughts, or prayers, or do a voodoo dance that will keep me out of the hospital this time. I can take some pain and discomfort - just don't want to be incarcerated and tied to an IV pole again!


As always - I'll talk to you from the other side of this treatment.

274

Down and Out

Hey all. Chemo number four has knocked me flat on the floor. It's wednesday and I still haven't recovered from the infusion last Friday. I've been running a fever of 101 - 102 since Sunday. I am miserable. My whole body hurts. Four days is a long time to have a high fever.

Had blood work done and everything is normal. Waiting to hear from the doctor today to see what's the next step. I'll write on the other side of this misery... but for now send good thoughts my way (or the calvary, or hemlock, or something!)

3 Down - 3 To Go

Chemo 3 is done. This round was a little harder than the previous ones. A little more nausea, a little more indigestion, a little more fatigue. But it is done and it brings me to the halfway mark.

The next three sessions will be a different drug which means we are back to the unknown and which further means that my anxiety sky rockets. I hate the unknown. The new drug has weird side effects that scare me - shortnesss of breath, skin reactions, mouth sores, darkening of the skin and nails. Did I mention that I hate the unknown? I have to try and forget all about it for the next three weeks. I need a new mantra - any suggestions?

I am happy that the long holiday weekend is near. The Fourth of July is one of my favorite holidays. I like cooking out on the grill and having summer fresh veggies. I love drinking beer in the humidity and shooting off fireworks in the dark. Large firework displays are nice, but I'd much rather shoot my own. I love going into that sweltering hot tent and filling up a basket with roman candles, butterflies, and sparklers. It's good to throw in a fountain or two and you must have a dozen or so large mortars. Throw in a few punks to use as lighters and you've got yourself a couple hours of do-it-yourself entertainment. God Bless America!

Hope everyone has a safe and happy Independence Day!

600

Chemo 2 is Done

Well, I made it past chemo number two without much problem. My reaction was pretty much the same as the first time. I fought the nausea for several hours after the infusion and then felt tired, irritable, and hung over the next two days. I hate the nausea part but the rest of it I can tolerate. The weird part about the nausea is that even after it’s gone, if I think about it, I start to feel queasy all over again. It takes a few days to get it out of my mind.

The hair… is gone. It became such a mess I had no choice but to shave it all off. My sister-in-law, Diana, brought clippers to the house and shaved it for me. I have to tell ya – it is weird being bald. The loss made the weekend a little harder to handle. It’s a lot easier to talk the talk than to walk the walk – if you know what I mean.

For the first 24 hours, my head felt like it had mentholated cream all over it; it was tingly and cool. And my scalp feels very tender and vulnerable. There is still some stubble left so right now it feels rough like a cat's tongue! I’ve never been very good with accessories so this whole scarf and hat thing has me rattled. So far, I am clinging to one orange-ish scarf in particular. Every outfit will have to match this scarf because it’s the only one that feels comfortable!

This will take some getting used to….

Stress

Feeling a little stressed today. Chemo number 2 is Thursday. I went to the doctor this morning for my blood draw. They have to make sure your blood counts have rebounded from the previous treatment before you can proceed with the next. Once again, my paperwork got "lost" and I waited 2 hours for my appointment! Argh.... I had to ask the desk 3 times before they finally figured out the breakdown in communication. The doctor was very apologetic and said she would explore why the wait had occurred.

The doctor gave me a good report and said I was "ahead of the curve" so far. She said subsequent treatments usually follow the same course as the first treatment, so I should expect the same side effects and response time. I like knowing what to expect.

I'm not as worried about the chemo, but I feel like I am leaving way too much work undone. I know the world will go on without me and everything will be okay in the end, but I'm having trouble turning off my guilt meter.

One of my tasks for the weekend is to shave my head. The fall out is becoming too messy and bothersome. God, that's gonna be weird. What was that damn mantra?

My sister will be here again and it will be nice to have her back. She is such a trouper to come here from Nashville - which is not a short drive. I'm sure we will have a fashion and accessories session to deal with my bald head! She is much better at those kinds of things than I am.

Wish me luck! I'll let ya know how it goes.

The Scary Date Is Set

Okay - I've committed to Thursday, May 15th to start chemotherapy. My appointment is at 12:00 noon. Weird time, huh? Setting the date somehow makes me feel less nervous about it all.

My sister, Janet, will be coming down from Nashville, TN to go with me. It will be great to have her company. Plus, we will try to squeeze in some time for wig and scarf shopping :)

Here we go......... !!!!

Radiation and Chemo

I had an appointment with the radiation doctor this past week. Radiation is something you must do to prevent a local recurrence if you have a lumpectomy, like I did. I was really puzzled why my surgeon wanted me to see the radiation specialist because that usually comes AFTER chemotherapy. Turns out, they want to enroll me in a clinical trial of partial breast radiation versus whole breast radiation. They are doing research to see if radiating the lumpectomy site alone is as effective as radiating the whole breast.

Conventional whole breast radiation requires you to be treated once a day, five days a week, for 5-7 weeks. The partial breast radiation is different. You receive radiation treatment twice a day for 5 days and then you are done. They also do it BEFORE chemo. Now I finally understand why I was sent to see the radiation doctor so soon!

The short time frame of the partial breast radiation is appealing... but they only have five years of data to show that it is a viable option. While I would like to help out in the name of research - I just don't think this trial is for me. If I lived far away from a treatment center that made daily treatments problematic, then maybe I'd be willing to give it a go. But the treatment center is less than 2 miles from my office and maybe 10 miles from my house. Going there every day for 5 weeks won't be a problem. I think I'll stick with the conventional treatment and choose whole breast radiation. That will come after chemo.

Speaking of chemo... I may start sooner rather than later. Because of holidays and other commitments, I may start on Thursday, May 15. That's next Thursday! I had said I wanted one more week of healing, but the calendar is pushing me. I am *sleeping* on the idea this weekend and will decide by Monday morning if that's what I want to do.

Another reason to start is that the waiting is making me anxious. Sometimes my imagination is my worst enemy! Left to ponder, I can make things much worse in my mind than they are in reality! Every time I really think about the chemo I start to feel nauseated and develop a mild headache. I think I just need to get started before I work myself into a frenzy!!

I'll post my decision on Monday.

Chemo Looms

Well, I haven’t posted in awhile so let me catch everyone up to date.

The healing is going well and I came back to work on Monday. The work I left behind is still there and waiting to be finished. Blah.

The burns have faded (thank goodness) and have been replaced with itchiness! The soreness is slowly getting better and my range of motion is great. I am pretty darn pleased with the scar. It’s long, it’s prominent on my chest – but as far as scars go, it is a fine one. My badge of courage.

I went back to the surgeon on Wednesday. There is still fluid under my incision which is pretty normal – technically it’s called a seroma. He had to drain it again, but less fluid came out than last time; a good sign that it is shrinking.

Later that same day, I had a visit with the medical oncologist, Dr. Hutchins. I think I’ve mentioned before that Dr. Hutchins is chair of the oncology department and oversees the oncology fellowship program. Once again, I feel like I have one of the best doctors available; I like her a lot. She is a polar opposite of my surgeon. Whereas he is brisk and authoritative, she is mild and takes her time.

Many of the decisions in cancer treatment are based on numbers – and they’ve been keeping numbers on breast cancer for many, many years. The bottom line is this – taking chemo improves my survival rate from 84% to 92% - an 8% gain. So heck yeah – I have to do it. She is recommending 6 cycles of chemo – once every three weeks. We will do three rounds of one “cocktail” and three rounds of another. The first three rounds are known as FEC (short hand for the three different drugs involved) and the last three rounds will be a drug called Taxotere. They both come with the fully expected range of side effects – and yes – I will lose my hair. Knew that was coming – right?

If you have a burning desire to know the details about either drug, you can check out the following links:
FEC - http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Combinationregimen/FEC
Taxotere - http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Docetaxel


Dr. Hutchins says we can start anytime I’m ready. Gulp. I am not ready. I am scared.

I went home after the appointment and threw myself into total denial. I didn’t look at a calendar; I didn’t google the drugs to learn more about them. No, I turned on the tv and watched horrible reality shows for three hours without moving. I watched “Wife Swap,” “The Super Nanny,” and “The Barbara Walters Special” on her new, tell-all memoir. Serious denial. I just couldn’t bear to think about any of it.

Dr. Hutchins gave me some other information during the appointment that was hard to hear. I asked her how we monitor for a recurrence after all the treatments are done. We can’t realistically scan my body every six months, right? The answer is, other than ongoing mammograms, you simply wait for symptoms to appear. You wait because early detection of metastases isn’t important. Metastases aren’t usually curable – no matter how soon you start treating them. Ouch.

Bring on the chemo.

First, I’d like at least one more week of healing under my belt. Next, I have to look at the calendar. Since everybody responds differently to chemo, it’s hard to decide what day to start. Some people have reactions the night after they are infused. Others don’t feel bad until 48 hours later. How will I react? And do I want to try and spend weekends recovering? Or should I give up time at work so I can be with my family on the weekends? There are too many unknowns and I have already told you about my trouble with decision making.

I am a slow thinker. It’s gonna take me a few days to figure this all out. But I guess it’s safe to say that chemo will begin in a couple of weeks – most likely sometime the week of May 19. The sooner I get started… the sooner we can quit.

I read that Mohammed Ali once said, “I hated every minute of training, but suffer now and live the rest of your life as a champion.” Seems like a fitting motto for chemo. Think I’ll adopt it.