Sunday, May 31, 2009

Life is better without nausea!

I had almost forgotten how much nicer life is without nausea! Ok, I'm exaggerating a bit, my memory is not quite that shortlived (yet?) ,but I am certainly glad that this awful nausea is finally abating. Being so constantly nauseated I couldn't even sleep certainly wasn't fun. But it started getting better last night, which meant I slept some more, and between that and skipping the final prednisone tablet I was supposed to take (hush, don't tell the ER doctors! It's our little secret...), my stomach is getting closer to its normal state. Yay!

As I suspected, however, the site where my IV line was inserted didn't fare so well, though. I have a nice little case of thrombophlebitis again. There is a thick thrombus in the vein in the back of my hand now, and a secondary one has started to develop further down that same vein. They are tender, but hopefully the warm compresses will be able to help them dissolve before they do too much harm. I guess my veins just don't like having chemicals pushed into them (even if it is a "pina colada" pushed by my favorite sleep man). That mediport had better work, because I don't think my peripheral veins could tolerate chemo.

It was a beautiful and sunny day today so that we could have lunch and dinner out on the deck, overlooking the back yard and all its flowers. We also went for a walk with the dog again, and this time all four of us had the energy to walk the much longer route the dog prefers to the short once-around-the-block that was all I could manage yesterday. After these surgeries, I always feel the need to get walking and exercising again, so that I can get my strength back. So hopefully I am officially done with the slicing and dicing for the time being. Yes, my reconstruction is not yet finished, I know, but it will have to wait until I have enjoyed all of my cocktail hours, and then some. Plus, there may be some frying (i.e. radiation) in my post-cocktail hour future, which would further postpone reconstruction by six months or so. So barring any further complications, I should be able to slow down my breakneck speed of surgeries somewhat.

I am glad I let my boob man revise the tissue expander, though. This implant feels much  more comfortable already. Plus, I had had issues under my arm (oddly in an area that they didn't even operate on) where I had some swelling and had lost sensation. Now that I am not as nauseated any more, I have noticed that sensation in that particular area of my body has returned, which I am very happy about!!! Plus, the incision doesn't even hurt that much -- actually the chemo port often bothers me more than the more recent revision incision. So overall I am really happy with the results of this week's surgical adventures. All's well that ends well, right?! And life definitely is better without nausea...

Things that I am particularly grateful for today include: hours spent with my mom, who will soon have to return on home; that the nausea is abating; the sweet yet spicy aroma of my favorite Scentimental rose.

Saturday, May 30, 2009

On the slow road to recovery

I needn't have worried about forcing myself to take it easy today. A serious case of post-surgery nausea took care of that for me. It started last night, and together with the effects of the antibiotic levaquin, which keeps me awake, got bad enough that I couldn't sleep all night long. So naturally, today was a slow recovery day for me as I battled more nausea. I can really feel this time that it is the second surgery for the week, and the fifth surgery in two and a half months. Turns out these things do not really get much easier the more often I do them... go figure.

Luckily, I managed to sneak some sleep into some not quite so nauseous time this afternoon. I've also been extra careful about what I eat, since I got really hungry  yesterday and probably ate more than I should have. So hopefully the nausea will have less of a hold on me tonight so that I can get some more much-needed rest. 

Today, my mom finished sewing two more chemo headcoverings for me. I also have fabric and sewing patterns for a bunch more, so I will be ready for chemo and its side effects. I just hope that they'll be able to control the nausea better during the chemo than they did after this last surgery... But I keep reminding myself that overall, things could be much worse. 

This evening I even had the energy to take a slow stroll around the block with DH, my mom, and the dog. It was really nice to see all those flowers in bloom. We also took a nice tour of our back yard and admired the many flowers that are springing up there in their early summer glory. One of my favorite roses called "Scentimental" is blooming already, and I enjoyed its spicy scent as I ambled by. I've always really enjoyed our back yard and all its flowers, but this year I am making sure to really stop to smell the roses. 

Friday, May 29, 2009

Once more unto the breach, my friends, once more!

Surgery number five has come and gone -- once more unto the breach! I have never had two surgeries in a single week before, but this went smoothly nonetheless. At least in part I attribute this to the fact that once again, I was put out kindly (and warmly under my favorite OR warming pants -- I want a pair of those for home!) by my favorite sleep man Dr. A. I had requested him for Tuesday but got some other dude, but today I hadn't specifically requested him (had no opportunity since I didn't have to have another pre-surgical testing appointment) and was lucky enough to get him anyway. He is so nice, always laughs and chats with me, makes sure I'm warm and comfortable, and he always finds my veins on the first stick! When he started pushing meds, he said he's giving me a pina colada. What more could I want from a sleep man??? 

I'm rambling a bit, I know. Blame it on the meds they gave me. This time, they woke me up while I was still in the OR. So I talked to the surgeon and the sleep man and heard firsthand that everything went well. I even had to sit up on my own when they put on my "sexy" surgical bra, and then they made me scoot over onto the bed! This was more work than I've had to do for previous surgeries. I think the level of service there may have declined somewhat... but since they have a "no tipping" policy, I guess that doesn't really matter.

Anyway, here's what they did during surgery: Dr. K took out my tissue expander and exchanged it for a brand new one. There go another $4500 -- let's hope that the insurance company or someone else pays for it. Actually, my old tissue expander had issues. Apparently there were some folds in there where the softer plastic meets the harder plastic and the surgeon worried that the expander may not inflate properly (might that have been part of the problems that I have been experiencing???). Dr. K also reinforced the weak spot I had with more Strattice pig collagen and skipped the dead human collagen, for which I am very grateful. In other words, I am all fixed up now -- and hopefully done with the whole surgery business for the time being!

Now it's 6:30 p.m. and I've been home for approximately an hour and a half and I feel pretty good. Sorry ladies, not good enough to come join your party, but good enough to have eaten something, and to be surfing the web and posting to my blog. They gave me an antibiotic called gentamicin this time, in hopes that I will tolerate it better than the ventamycin. I keep checking for weird rashes, but so far (knock on wood three times!!!) no itch, no rash, no nothing. I hope it will stay that way. My only adverse effect so far is a blister on my tongue which they thought was from me biting my own tongue when they administered the general anesthesia, which paralyzes the muscles and may make people tense up and bite themselves. But for side effects, this isn't too bad as far as I'm concerned. 

I am determined to take the next two days very easy. For the fifth surgery, I should finally learn that I need to do that so that I don't feel as lousy on the second post-slicing day as I have been. Or as the bard might put it "In recovery there's nothing so becomes a woman as modest stillness and humility." However, when my war against TNBC begins in earnest next Thursday with my first round of chemo, I should take these next lines as inspiration: "but when the blast of war blows in our ears, then imitate the action of the tiger"(both quotes are from Shakespeare's Henry V, -- with a few liberties on my part). If all goes well, by Thursday I will be ready to welcome the poison into my body that will pounce on any cancer cells that remain inside me and shred them to bits so that they will never harm me again! Yay, one step closer to being done!!!

Thursday, May 28, 2009

Here I go yet again...

Another night, another surgery for which I need to get ready. It is the second one for this week. When the ambulatory surgery center called to confirm my arrival time for tomorrow, they could barely believe that I will have to go under the knife again so soon. At least there were no extra blood draws to contend with, I just need to arrive at the center two hours before my surgery so they can fill out the paperwork for the procedure.

Hopefully the revision surgery will take care of the pesky tissue expander fold sticking out so that the rest of my reconstruction can progress smoothly. I had two instances when I felt a really nasty stabbing pain, one after each time I got pumped up.  Each time it was the kind of pain that takes you breath away in a bad way, so I am assuming those were the moments when something came loose. When I looked at the problematic area this morning, it really seemed worse than it was two weeks ago when I last saw my boob man. So it is important to get this fixed. I am just getting tired of getting cut up all the time, and having the resulting healing pains and limitations to my range of motion, and all the other stuff that comes in the aftermath of surgery. So I'm trying to work on that whole serenity thing again tonight. 

It has been a slow and tired day for me, as it is the second day after my port insertion. Once again, I feel worse on day two after the surgery than the first day. How odd is that? Maybe because of the drugs the ER doctor prescribed for my rash I couldn't sleep very well and managed to get only four hours of shuteye last night.  I am sure that this did not help me feel any better, either. So in a way I am glad that I did not have to start chemo today, of all days, but that I could spend the day resting and healing some more. 

I got to take off my surgical dressing on the port insertion scar today. It looks like the scar is about two inches long, with the port (which is about the size of a quarter) inserted approximately 2.5 inches below my clavicle. Luckily, there doesn't seem to be any infection nor bruising from that surgery. It is just too bad that Dr. R said they shouldn't use the port to administer anesthesia, as I am afraid that my late surgery time (1:30 p.m.) and the necessarily long fast resulting from it will make my veins hide even more than usual. So I will have to make sure to eat a bunch more stuff before midnight and to keep hydrating very well so that the nurses will have a chance of getting an IV line into me tomorrow.

What's another little surgery, right? Just to keep track of things, I have added a counter of chemo rounds to go, surgeries, and ER visits to the right sidebar of this blog. Given that these events keep piling up in greater numbers than anticipated, I felt the need to keep an official count. Scroll down and take a look at them if you will and let me know what you think.

I'll try to stay up late tonight and then sleep in tomorrow morning in an effort to make my NPO time more tolerable. I hate smelling coffee on surgery mornings and breakfast, all the while knowing that I cannot even have a sip of water (other than the one sole sip I get to down the obligatory pre-surgery pepcid...). As you can probably tell, I am not big on the whole fasting thing. Can somebody invent surgery without fasting, please?!!! I get really cranky when hypoglycemic, and my veins shrink away when that happens...

Anyway, I took a little nap this afternoon to preserve my strength. In the morning and the afternoon I even managed to tidy the house a bit and work my way through part of the paperwork that has been piling up everywhere (most of it is related to the poor state of my health -- yet another reason why I am starting to think that being sick is basically a full-time job). So overall, it has been a slow but nonetheless sort of productive day for me. 

Well, I am almost ready for surgery number five! Let's hope my boob man has managed to overcome his jetlag from his European travels, and that he will be able to fix up my foobie and contain it within its proper boundaries.

Wednesday, May 27, 2009

The dominoes are falling...

The port is in, but the dominoes keep falling because I will need to have a revision surgery for the tissue expander. Part of the Strattice that is supposed to be covering the expander at the bottom is not holding up as well as it should, which means that a fold of the half-inflated tissue expander is pressing against the surgery scar. 

This means that on Friday at 1:30 p.m.  I'll have to go under again to have the problem fixed (I will be so starved and dehydrated after fasting since midnight that finding a usable vein is going to be a major digging expedition!!!). Surgery number five in two and a half months, here I come! It is supposed to take no more than an hour. My boob man said he may want to use Alloderm on me this time, which is human-derived epidermis. However, when he first told me that he used to use Alloderm, he said he switched to Strattice because he found several of his patients had allergic reactions to the preservative in the Alloderm.

Now, as you may remember, an allergic reaction sent me to the ER just yesterday. So I am not excited about the prospect of yet another allergic reaction... I'd like to stick with the pork, please, since I'm pretty sure I'm not allergic to that.

Apparently, one of the culprits for my allergic reaction yesterday was the antibiotic vancomycin, which can cause allergic reactions, both when infused too fast, but also when administered in conjunction with anesthetics (see this link for more information). I know for a fact that they did not put in my IV line until I was on the operating table. I only had saline on my IV line when I woke up -- and the surgery took less than an hour. So I'm thinking they both infused the drug too fast, and in conjunction with drugs that are known to increase infusion-related adverse events. And voila, here comes the allergic reaction of "lobster woman." Boy, I think I'll accumulate a lot of medical knowledge before this is all over...

In any case, this additional surgery is messing up the rest of my carefully planned medical schedule for the month. Obviously, with surgery on Friday, chemo on Thursday is out of the question. So I had to call to have it moved up one week, which both my boob man and my poison man agree should be long enough to permit me to heal sufficiently before getting my cocktails. Hence the new cocktail hour date is Thursday June 4 , 2009, a day after my mom flies back home. Oddly, they made my appointment for 2 p.m. However, my first round of AC chemo supposedly takes approximately six hours, as they will have to pre-medicate me with all kinds of additional stuff. So I suppose I won't be done until 8 p.m. then, which seems mighty late for closing hours, though perhaps not for cocktail hour... In any case, they assured me they would not leave before I'm done. Let's hope... but I'd better bring some good music, movies, books, FOOD, and -- of course, DH!!! On Friday the 5th, I'll then have to go back to the cancer center to get my Neulasta shot.

Thus all the dominoes fell, but undaunted (well, not quite -- I'll admit I was a little daunted at first...), I put them back up into their new places. What's a little more surgery after all...?

Tonight I had dinner with my friends no-l, 1l, and 2l, as well as DH and my mom. It was a nice little get-together that I particularly enjoyed, since no-l and 1-l will be moving up North at the end of the month for their sabbatical year. There will be an official goodbye party on Friday, which I will unfortunately have to skip due to the slicing and dicing I will undergo earlier that day. So this was my official little goodbye party with them.

I received another gift, though, this time from 2l, who got all creative. She got a little transparent egg carton and made little blue and pink pom-pom embies with little eyes, and some even with glasses (since I have bad eyes, and DH has some issues too), plus all with individual hearts. It's a dozen, of course, with gender parity, and all the cute little ones are sitting in their egg carton waiting to be hatched. How cute is that!!! They will have to sit next to the glass rooster I gave DH for our anniversary... It just makes me smile to look at them, and reminds me of the good things waiting for me once this not-so nice part is over...

Tuesday, May 26, 2009

Double whammy

I went to the ambulatory surgery center this morning to have my port implanted. Everything went well, except that I did not get my favorite anesthesiologist that I had requested. The one I did get let his nurse put in the IV line, and he wasn't very good. It took him two lidocaine injections and two digging expeditions (all as I'm already strapped onto the OR table and getting jostled around by the other nurses who are trying to ready me for surgery. Well, he got it in eventually. 

After the surgery, I felt pretty good. We were home by 11:30 and I ate heartily (no nausea this time -- yay!) and then rested in bed reading a good book. An hour or two later, however, I suddenly started to get itchy. And then I got itchier -- and then itchier yet! When I peeked down onto my skin, I suddenly realized that my entire trunk had turned a bright, vivid red!!!

Figuring that this may not be a good thing (can you imagine -- that must have been my lucid moment for the day...), I asked my mom to verify that my eyes weren't playing tricks on me. However, my eyes were as good (or bad) as they always are, since my mother agreed that I was pretty much glowing red. So I called Dr. R's office to find out what I should do. His secretary had to page him, as he was still in surgery at the center, but when he heard he told me to go to the emergency room right away. Within two hours, we thus returned to the hospital... my very first trip to the ER as a patient! Seems I just cannot get enough of that place these days...

Once I again I was helped promptly, even though the place was terribly overcrowded with tons of beds sitting in the hallways. Since they suspected something contagious, they made me wear a mask and put me in an isolation room! Turns out, however, that I must be allergic to at least one of the many meds they gave me during surgery earlier that morning. What exactly I am allergic to nobody could say. One suspect was the antibiotic vancomycin, which can cause something called "red neck syndrome" or "red man syndrome" if infused too fast. But for that, my rash appeared too late. Another suspect is the contrast dye they used to confirm the proper placement of my mediport. Yet I'm afraid that we may never know the culprit for sure, as they simply gave me too much stuff today.

In any case, they pumped me full of benadryl, predisone, and also gave me some real pain meds for good measure (yay -- since Dr. R does not 'believe' in anything tougher than Tylenol). Then I needed to wait it out to see whether the treatment worked. Luckily it did, which meant that we could go home approximately three hours later. Thus ended my first trip as a patient to the emergency room.

When I was in the recovery room after my surgery, all of a sudden I thought I might be hallucinating, as my plastic surgeon Dr. K walked in. I wished him a good morning, and he turned around and looked at me with utter surprise. Fresh off a plane from Europe the day before, he was really there to perform a surgery on someone else. When he saw me, however, he decided to give his handiwork a quick checkup, particularly since I had felt a corner of the tissue implant poking me in rather odd and disconcerting ways. Sure enough, he found a stitch he had neglected to take out properly, and he also realized that what I had already shown him two weeks ago on the day he flew to Europe, was really something that required revision surgery as I had feared. Thus he insisted on calling my oncologist about postponing the chemo.

As a consequence, my plans have changed a bit now. On Friday, Dr. K will "revise" my tissue expander (almost sounds like a part of a "writing intensive" college course, no?). My chemo will therefore have to be postponed for an entire week to give both of the surgery scars sufficient time to heal before my body gets bombarded with cell poisons. Unfortunately, this also means that my mom will not get to be here for the first round of chemo. Bummer! But DH has promised to be by my side, which I very much like. Makes stuff like that much easier to bear. He also rushed from work to the ER today when I told him where I was headed. I love it when he does that. Shows what a good guy he is!!!

I do not yet have exact dates and times for everything, as I spent the remaining business hours of the day at the ER, where cell phones are a no-no, particularly when you spend most of your time in the hallway, as I ended up doing once they realized I wasn't infectious. Thus I will have to make a bunch of phone calls tomorrow to figure out what will be moved to when.

On the up side, I collected SIX wristbands for my 'trophy' collection today! Things I am particularly grateful for today include that this was my very first patient trip to the ER; that I now know exactly where to go should I ever need the ER again (which, I have a feeling, will come in handy given my problems with allergic reactions); that DH was by my side both for the surgery and the ER trip.

Monday, May 25, 2009

Here I go again...

Well, here I am. It has been a wonderful, delightful, and sunny holiday weekend. But the fasting starts in a few hours in preparation for my surgery tomorrow. Another morning, once again NPO, another surgery. I say it so easily these days, yet until this past March, i.e. until two and a half months ago, I had never had surgery that required anything more than local anesthesia. Yet in the two and a half months since that first surgery that diagnosed me as having TNBC, I have undergone three surgeries already, with the fourth one coming up tomorrow morning. Funny how fast things can change. What is even weirder is that I am nowhere near as nervous about this fourth surgery than the first one. I suppose I'm sort of getting used to all the surgery stuff, and not dreading the unknown any more as I did before they cut me up the first time.

This time they will be implanting what I hope will be my new friend: a chemo port. Hopefully, this little device -- despite the additional scars it will add to my already marked body -- will free me of all those painful needle sticks and all the digging around in my veins that invariably results in bruised arms and/or hands. Yeah, the back of my right hand is one of the few places where they have been finding usable veins recently. And the digging in there is even less fun than the digging elsewhere...especially with the memory of the numb fingers from the anesthesia for the mastectomy still fresh in my memory! Ah, so much fun...but soon that should be over.

And once that port is in -- let the party begin! I really, really want to get started with the chemo so that the last, stray cells of that nasty cancer can be eliminated. So cocktail hour, here I come.

Actually, I am also thinking about taking part in two chemotherapy-related research studies. As a researcher myself, it seems to be fitting to aid science as a research subject for once. One of the studies investigates anti-nausea drug cocktails (more cocktails, yay!), while the other one looks as preventing bone pain from the Neulasta shot I will receive after each round of treatment.  Since neither study will involve any additional needle sticks or blood draws, but only a few questionnaires, I think I will give my informed consent. Somehow it makes me feel as though it makes me more useful than I have been to society recently. Plus, it's always neat to be part of a research project. Ok, I admit it -- I am a geek! You're on to me, so what? So sue me -- or live long and prosper!

Sunday, May 24, 2009

Little luxuries

A weekend all without doctor's appointments and medical stuff. Just gardening, some grilling, good food, good company. I really enjoy these little luxuries, even more so right now then I used to enjoy them. They  make me feel almost normal.

But then of course, things aren't almost normal. On Saturday I was fighting almost constant nausea, and a huge tension headache. Today it was only an intermittent headache. No, it's not morning sickness, not to worry -- despite the 'positive' pregnancy test. It's just a sign that my body got pumped full of hormones this cycle, and is still laboring to get the remainder of them out of my system.

Somehow it messed up my blood sugar levels, too. When I used my mom's diabetes blood sugar test kit this afternoon, I scored a 67, which is quite low. No wonder I've been having the munchies and getting cranky every few hours -- I've been hypoglycemic, apparently. Oh well, just gotta keep the crackers handy.

I hope it won't be too hard to fast for the surgery Tuesday morning, and that the night won't be too hot so I'll get dehydrated. At least the surgery is scheduled for 8:30 a.m., which means we have to get there around 7:30. Last time it was 6:30 a.m., which was quite very early! So I'm glad this one is early enough in the day so I don't have to fast too long, but not so early that I have to get up before I go to bed.

But before then, I get on more day of respite. DH will actually stay home since it's Memorial Day, and spend the day with my mom and me. That'll mean more gardening, more barbecue, and more time to relax and enjoy the good things life has given me. And I am increasingly determined to enjoy those good things in life as much as I can, and to be extra grateful for them.

Friday, May 22, 2009


Remember when I said on Wednesday that I imagined there would  be some misleading results from that pregnancy test that nurse D. ordered? Well, today was the day they finally confirmed my sneaking suspicion: Apparently, my HCG levels should be at 5 or below, but mine was at 8. My first positive pregnancy test -- yay!?

The only problem is, I am not really pregnant. I happen to know. Pretty much for sure. My HCG is elevated, because upon Doctor's orders, DH injected me with 10,000 IU of HCG little more than a week before that pregnancy test. And they are surprised that my HCG levels are still elevated a bit???

They broke the test results to me at 10 a.m. Friday morning. And the very apologetic, but also insistent F from surgical scheduling told me that I needed to obtain a note from my RE verifying that my HCG levels are abnormally high due to an IVF cycle. Oh, and to make the challenge more fun, I needed to get the note to them by 12 noon since they close early for the long holiday weekend. Oh the fun! So I dropped everything else I was doing ... and got on the horn. Luckily, Dr. S, my RE, was in the office (and not in surgery or anything) and willing to write me the note. Thanks so secretary B's quick and efficient help, I had my note within an hour. Still, to be sure I had them fax a copy not only to Dr. R's office, but also to myself. This way I will be able to carry a copy with me Tuesday morning when I go in for the surgery.

This little incident added quite a bit of excitement to my day. Actually, it was a bit more excitement than I really needed...

I spent the afternoon planting the window boxes for the deck with flowers. I needed some fresh air after the morning's unpleasant surprise. These kinds of things keep happening, and I need to learn how to face them with more serenity. I guess I just get really irked when they threaten to cancel my port surgery, as this would mean taking the chemo in one of the very battered veins in my right arm. If you could see my arm, you would know why...

Things I am particularly grateful for today: my darling husband, for sticking with me for better and for worse; my mom's cousin, who sent me a huge pack of lovingly chosen books to read; a beautiful and warm day full of sun and the joy of flowers.

Thursday, May 21, 2009

Appointments, appointments, appointments...

Today was my big day of appointments. In the morning I saw my dermatologist for a whole body exam. After lunch I had my hair cut into a short pixie style again so it'll be more manageable once it starts coming out. In the afternoon, I had a dentist's appointment to make sure my teeth are in top shape so I won't need dental work during chemo. 

The first two appointments were uneventful, but the dentist's visit was quite something else. I saw this particular dentist, Dr. M, for the first time today. He seemed really competent and was really nice. I needed to have a tiny filling replaced, which he could do without lidocaine (one less needle-prick, yay!), and he cleaned my teeth.

The problem was really not with the dentist, but with our dental insurance. As it turns out, until 2007 we were in a dental HMO plan. DH saw one of the few people who accept that plan in our county, and he wasn't that good. Essentially, he refused to do any work during the session he discovered the need for it, but always made DH come back for another appointment (more money for him, I suppose). So in January 2008 we filled out the paperwork to switch to the other dental option offered by DH's employer, which is a PPO plan, since it would give us many more options.

Dr. M is in-network on the PPO plan, but not an option under the HMO one. So when he tried to verify my eligibility, neither DH nor I showed up. After a frantic call to DH, and some soul searching, I asked him to check eligibility under the HMO plan, and lo and behold, we were still eligible under that -- except Dr. M is NOT a participating provider. An urgent call from DH to his human resource department spurred them to find the paperwork we had given them back in '08. However, the PPO dental insurance claims they never received the paperwork. Arrrrrgh!!! Why do they keep messing up like this? I guess we would have found out sooner, if we had been going to the dentist more often, but still, this is ridiculous. 

The upshot of the whole story was that I had to pay for everything up front. However, Dr. M was kind enough to say that he would submit a claim if it turns out that I was eligible for the PPO after all, and then reimburse me. In 48 hours we should be on the computer system, and since they backdated our eligibility to May 1, we should be covered for today's work. Still, yet another pain in the neck!

I am getting pretty tired of insurance companies. Due to the vagaries of our particular plan, we have FIVE different insurance cards: one for doctors, one for hospitals, one for regular medications, one for special medications (injectables, asthma, chemo, etc.), and one for dental. It's a science to figure out who covers what. Frankly, most of the time it makes my head spin...!

For instance, when they refused to pay for the surgeons for my mastectomy, since I had a lumpectomy with reconstruction a month earlier. They consider this "follow-up care" for which they do not allow extra charges. So now I might get stuck paying approximately $40,000 in surgeons' fees. If they insist on refusing to pay, I'll grieve it. I'll fight them big time -- what's wrong with these people?!

So to calm down after all this running from appointment to appointment, I found myself some candles for my chemenorah. It's a very multicultural chemenorah now, since the candles are Chinese Buddhist ones. But with a pencil sharpener they fit into the chemenorah quite nicely. Plus, I thought their pretty red color was very representative of the adriamycin, the "red devil" they will start pumping into my body soon. So the chemenorah is all set up now, and ready to go. Watch out chemo, here I come.

But before then, I have a nice long holiday weekend to enjoy.  Time for some more normalcy first: some gardening, some walks with the dog, time with DH, time to relax. I'm looking forward to all of that.

Wednesday, May 20, 2009


Pre-surgical appointment for mediport implanation done: check. Three nurses who each tried to find a usable vein (supposedly mine are "rubbery" -- I call it "battered, irritated, and scarred"): check. Ouch, OUCH, ouch! Check, check, check. Nurse insisted on running a pregnancy test, although it will not be reliable given that DH injected me with 10,000 international units of HCG, the pregnancy hormone: check (curious to hear what those results will be...). IVF center called to find out whether their bank had cashed our check for the hefty IVF fee (apparently their bank has lost our check!): check.

The whole experience: absolutely PRICELESS!!!

Clearly, complications keep coming my way. But I try to make the best of these situations and try to smile my way through them (or sing "yikes" in the case of the vain needlesticks...) and soldier on. As a reward, my mom and I went fabric shopping afterwards so we can produce some more chemo caps, scarves and headcoverings. I need to prepare for utter and complete baldness (apparently, every single hair on my body is expected to fall out; that includes eyebrows, lashes, as well as other "body hair" if you know what I mean...) and if I want to leave the house without scaring little children, I will need some options for covering my bald pate. I'll also have to learn how to draw a mean fake eyebrow. Will I even learn to glue on fake lashes for big occasions??? The possibilities are endless. 

In any case, we found tons of really nice prints at the fabric store (mostly batiks), and also some nice cotton knit for lining them so my sure-to-be-sensitive scalp will not be too irritated. The sewing pattern we wanted was out at the store, however, so I need to find ones elsewhere or we need to use the free ones we have and improvise. I got some really pretty colors and really love the fabrics we picked. This ought to make it easier to go through the whole hair loss thing. In the meantime I need to go once more pre-chemo and get my hair cut, as my former pixie cut is getting too long to handle! So tomorrow I'll see my dermatologist Dr. A in the morning for a routine checkup (boy will she be surprised to hear what has happened to me since she last saw me...), and in the afternoon I'll head out for the final, final pre-chemo haircut (before the ceremonial shaving once it starts falling out).

It is amazing how all of those doctors visits and appointment-making keeps me busy, though. Apparently being sick is almost like a profession in and of itself!

Anyhow, in a strange way I am almost looking forward to the start of chemo. No, don't worry, I'm not really a masochist! It is just that there is this quote I ran into on the web the other day that struck a chord with me:

"Chemo is not something they do to you, but something they do for you." 

So I am trying to look at this whole chemo thing as an investment into my own future. Could there be any better investment to make??? Surely not. Of course, I fully expect my dose intense ACT chemo to be grueling. But it is going to buy me a much safer grip on a good life.

Thus the sooner I can start chemo, the sooner it will be over -- and the sooner the rest of my new life can begin!!! And that latter part is what I am looking forward to the most. To being in complete remission and staying that way, and getting to that part where my life goes on, and DH and I get to thaw out some of our frosties and have ourselves a miracle baby to ruin our lives in the most perfect way imaginable.  

Technical issues

Just a few notes on various technical aspects of this site. First of all, I would like to draw your attention to the glossary which you can now find in the left sidebar of the blog. It explains some strange terms I use, just in case you are not familiar with my idiosyncratic way of meshing the lingo of various communities. So if you feel like you need a translator, this is the place to check out. 

Secondly, I want to let you know that I have managed to resolve the problems regarding comments on my blog. Initially it worked, until I upgraded to the new template and fiddled with some other settings. This seems to have made it impossible for anyone to leave comments on my blog. I have now changed those settings so that the comment form will pop up in a new window. So please be sure to allow pop-ups from my blog, as well as cookies and the comment function should work fine. If it doesn't please let me know and I'll do my best to work out the technical issues -- 'cause I really do love reading those encouraging comments...

Tuesday, May 19, 2009

Gearing up for cocktail hour

Sorry it has been a while since I posted, but I've been busy. On Sunday we worked in the garden some more. DH finished planting the vegetable garden, and I snipped of some more stuff that needed to be snipped. In the afternoon, we did some more plant shopping (can there ever be enough flowers in flower boxes???), and enjoyed the new Star Trek movie on an IMAX screen. It was quite nice, but I need to remember next time that my superovulating ovaries do not appreciate the non-reclining chairs at that particular IMAX...

Most of Monday, was occupied by medical stuff. In the morning there was the introduction to chemo class, and in the afternoon I went for my MUGA scan. The nurse took two tries and a catheter they normally only use on babies (or apparently also on crybabies such as myself) to gain access to a vein on the back of my hand. Hurray -- only two tries! I'm becoming a bit more modest in what I hope for...

The scan itself wouldn't have been so bad, if it weren't still so difficult for me to bring my left arm up high. Due to the mastectomy and the sentinel node biopsy I still do not have full range of motion. Partially, I blame the butcher for this, as he was the one who was supposed to make sure I get exercises and possibly physical therapy to help with that. But I guess by comparison with full lymph node dissections my case didn't look that bad to him. Go figure. So once again I'm on my own. At least I wasn't alone for the procedure, as DH managed to make it to both the morning chemo 101 class (which wasn't that informative) and the MUGA scan!!! That was quite nice, as he is not only the official purse holder, but also the official hand holder when I get poked...

On a different note, time waits for noone, so the countdown for my biweekly "cocktail hours" is on now. Tomorrow, I have my presurgical appointment for my mediport implantation on Tuesday. Then chemo starts on Thursday May 28. I've been gearing up for that, getting hats and scarves etc. to prepare for the hair loss. I actually also got a script for a "cranial prosthesis" aka a wig, but as it turns out, my friendly insurance agent tells me that my plan will not cover any such thing. Bummer. 

So instead, I surfed for free chemo headwrap patterns. I found a few and cannibalized two old t-shirts, then my mom sewed the cap. The outcome was pretty nice. It reverses, and since it is made from well-worn t-shirt material, it is incredibly soft. Tomorrow my mom and I want to incorporate some more improvements and discuss how we might want to alter the cut in the future. It's such fun to play with this kind of stuff together with her. Make for some really nice mother-daughter moments that I cherish very much...

My friends have also been helping me get ready for my chemo. Today, the delivery person brought me a mysterious box. At first, I had no idea why I was receiving it. After all, it was a menorah -- and I'm not Jewish. Turns out, however, I gradually remembered a conversation I had with no-l a while back about how I'll be having eight rounds of chemo. This had reminded her of the eight candles for Hannukah (and she isn't Jewish either!), and so she decided to get me my very own CHEMENORAH! No-l even managed to find a menorah (technically one for Hanukkah, as temple menorahs have seven arms) on a website that donates parts of their proceeds to breast cancer causes. Way to go girl -- you guys are amazing!!!

For each completed round of chemo, I will light a candle after the poisons have killed more of the remaining cancer cells, making my life flame burn temporarily more weakly, but more strongly in the long term. This is a really nice idea and a very sweet gift. Now I just have to find thin pink candles somehow and I'll be all set. Thanks, guys, you keep surprising me time and again! 

Last but not least, I wanted to let you know that even though I hadn't posted in a few days, I did manage to add a new feature to the blog. Some of you had asked what some of the strange terms and/or abbreviations mean that I use throughout this blog. It turn s out that I am mixing terms from the infertility community and the cancer community, with a dash of my own inventions. Apparently that was a bit too cryptic -- sorry about that. In any case, in order to help minimize confusion, I added a list in the left sidebar that spells out and explains what some of the most obscure terms stand for. I hope you will find it useful.

Saturday, May 16, 2009

Still marveling

We are all still marveling at how lucky we got with this IVF cycle to end up with twelve little frosties. If we had been proceeding with the fresh cycle, today would have been the day of embryo transfer. But of course, that is not what we are doing. So it was just a nice calm day, with sunshine, and yardwork, and some lazy time spent together, marveling at our unexpected IVF success.

I am almost done with my post-egg retrieval antibiotics, and my battered veins are recovering. This is a good thing, since on Monday I am scheduled not only for a morning "Chemo 101" class, but also for a 5 p.m. MUGA scan to make sure my heart is functioning properly before Dr. V starts poisoning me. Of course, the MUGA scan involves administration of a radioactive contrast agent, which is why my veins will need to endure another IV line on Monday, and a port implantation pre-surgical blood draw on Wednesday. But at least everything has had time to heal over, so it shouldn't be a big deal.

Next week I really should get a script from the poison man for a "hair prosthesis" aka a wig. I'm not sure how much I might wear it, but it might be useful when I return to work. So I want to see whether the insurance will pay for one. If they do, I definitely want to get one. They say to do that sort of thing while you still have hair, as it makes it easier to find something suitable and close to the original.

Those are the plans for the week ahead. If it weren't for the immediate past, as well as for the what the immedidate future would bring, this could have been an utterly normal day. DH put in the vegetable garden as the official frost date has passed, and I snipped off lots of remaining dead stuff in the garden. Deliciously normal things for this time of year. I like normal...   :)

Friday, May 15, 2009

Oh what a day!!!

Really, what a day!!! It is DH and my tenth wedding anniversary today, and we spent the day celebrating. He stayed home from work all day, took me to my second appointment with Dr. K to get 'pumped up' (100 ml more!), and in the afternoon we had tickets for the latest Cirque du Soleil show "Kooza". We then went out for dinner to what is reputed to be the most romantic restaurant in the area. It was a very, very, very nice day.

Although it was an essentially perfect day, it turned out to be even more perfect than we had ever dreamed it might: We received another call from the IVF lab. They wanted us to know that the super amazing embryologists at their lab had taken those eight immature eggos they harvested and matured them outside of my body, then fertilized them by ICSI (Intracytoplastic Sperm injection).

The miracle is, they did mature,  and we now have five additional embies to freeze!!! This means that as of right now, we have a whopping twelve potential future miracle babies on ice, waiting for mommy to be healthy.

As I'm writing this, I am still in awe, and in disbelief. I didn't even know they could do this --and yet here they just did it,  it almost doubles our chances of having our own kid. So I'm glad that the embryologists really seem to know their stuff at that IVF clinic...

I am so very, very, very grateful for the many good things that happened today!!!

Thursday, May 14, 2009


The IVF lab called today around noon with our fertilization results. We didn't do half bad! They had retrieved seventeen eggs yesterday, and eight of those turned out to be immature. This is not unexpected, as the letrozole tablets they have given me increase the follicle size without necessarily increasing egg maturity. 

Of the nine mature eggs, seven fertilized after ICSI (intracytoplastic sperm injection). So as of right now, we have seven little pre-embies which are hopefully dividing like good little pre-embies are supposed to do. 

We may lose some of those pre-embies yet before they're ready to freeze, and only 60% of frozen ones are expected to survive the thawing out process at some point in the future. Nonetheless, this is far more than they doctors told me we might get, so needless to say, both DH and I are very happy with the results of this cycle so far!!! This was excellent news!!! We might actually have a realistic chance to have a child together, after all.

What a nice gift to receive for our tenth wedding anniversary tomorrow...

Wednesday, May 13, 2009

Update -- lotsa eggos!

I'm back home again from egg retrieval and feeling pretty good. I'm barely loopy from the drugs any more, but I do have some cramping. It's nothing that a little acetaminophen wouldn't fix, though. So the rest of the day is reserved for resting, reading, and relaxing.

The day involved quite a bit of waiting, but went very well overall. The IVF center had pre-warned the nurses at the IVF surgery suite that my veins made me a tough customer. So they assigned an experienced nurse to me who got the IV line in at the wrist on first try. It was painful, but at this point, all of my veins in that arm are battered and sore. I survived, which is the main thing.

The retrieval itself went very well. Most of the time we spent was waiting to be called, as we had to be there by 6:45 a.m. although the actual retrieval didn't take place until 10:45 or so. The procedure itself was only about 15 minutes long, which I happily slept through. My recovery room stay only lasted 30 minutes or so. So we were back home by lunchtime.

The best news of the day I need to cackle about, however, is that they managed to retrieve SEVENTEEN eggs from me today. That's a LOT more eggos than we thought we would get. Granted, quite a few of these are bound to be immature, but still we hope to get a decent number of pre-embies to freeze!

We are supposed to get a call from the embryology lab tomorrow between 10 a.m. and 1 p.m. to let us know how many eggs fertilized. So please keep your fingers crossed for us that the good news will continue and that we'll get plenty of miracle babies in-waiting that we can put on ice.

Now that I've laid all of these eggs, I'm wondering whether I'm technically a mother hen...

Miracle babies here we come!

It's 4:40 a.m. right now, way before the crack of dawn. Even the doggie -- otherwise a big proponent of ball playing and other kinds of entertainment at odd times of the day -- is sleepy and wanting to go to bed. DH, my mom, and I, however, are up as DH and I will be once again venturing into the big bad city for my big egg-laying event of the day. I'm scheduled to check in at 6:45 a.m., with DH's presence required at 8:30 a.m. 

What a momentuous occasion -- we'll be making babies today!!! Well, technically we'll simply be providing the germ cells needed so the embryologists can do their magic and put some miracle babies on ice for us. 

And miracle babies they truly will be, as for years we didn't really have the chance to get there in the first place, even though we'd been wanting to have kids for a long, long, time. But they hadn't invented the fancy technology yet, that might finally get us a baby. So we outlasted the odds on that count at least, and we even skipped one surgery just about everyone thought we would need. So far so good!

I'm trying to imagine the stories I may tell our kid some day (and we'd be surprised and extremely, micraculously blessed to get more than one take-home baby out of this -- don't laugh, it's what they call them in the lingo of infertility... ) : "Listen, you were conceived on May 13, 2009, but you were born in 2013." "So I'm really four years older than I am, mommy???" All of this may take some explaining down the road. But then much of my life consists of odd detours that require extra explanations, so I suppose I'm just staying true to style here.

Anyway, here is to the hopeful surgery of the day. May it yield lots of good and mature little eggos, to be united with DH's good little sperms so we can have some frosties waiting for us down the road. Off to contribute our part to our potential future miracle babies now...

Tuesday, May 12, 2009

She blew, blew, blew my vein!

We made it into the big bad city WAY before the crack of dawn this morning, although there was an astonishing amount of traffic already. So we parked the car at the insanely expensive garage and ambled on up to the IVF center. After filling out tons of forms and enduring a rather strange group pre-op meeting with the nurse, it was off to the most grueling part of the daily proceedings for me: the dreaded blood draw.

I should have known it, but I was too tired to insist on getting one of my two magic blood women who can draw blood even from a stone. So I stupidly, stooooooooooooopidly let overconfident nurse E poke my poor veins. The result? She blew it big time. I mean BIG time! Or more precisely, due to her inept stabbing, my vein blew up big time. Lucky me, this happened on the day where they needed to draw a large amount of blood out of me in a syringe, meaning they couldn't use any hand veins. Magic blood woman R, who was ultimately called to the rescue, tried to get blood out of that same vein, but a huge clot had already formed and stilled the initial flow of blood. And it hurt like crazy.

So they sent me off to ultrasound, and ordered me back for the blood draw after I had heated my arm with little handwarmers. The good news is that my follies are apparently looking quite excellent, i.e. large and juicy. The doctor thought they may get as many as eight eggs out of me, which should result in a relatively decent number of embies, with a bit of luck.

The bad news is that even magic blood woman could not find a vein in my right arm that would yield sufficient blood for this plasma blood-letting. So I let her dig into my technically off-limits left arm, as it is relatively unscathed by needles. She found a great vein there and got the remaining blood she needed. Nonetheless, between the first failed attempt on the right by nurse E and later rescue attempts, my right arm is now black and blue with a juicy hematoma and a nicely developing thrombophlebitis. Yikes, it is really painful -- despite the warm compresses that I have been lavishing upon it. 

The bruise is so bad, and my vein where they had previously found blood still so tender to the touch that I fear the right arm is totally shot now, including the carefully saved vein. So I wonder where they will put in the IV line for tomorrow... But they have to get those eggos out of me tomorrow morning, or else I will ovulate and everything will have been for naught. So let's all hope for the best...

I've gotta keep reminding myself, it's all for a good purpose. It's all for a good purpose. It's all for a better future...!!!

Boy am I glad I opted to have a mediport implanted! If my veins had blown like that with the chemo going into my body, I might have suffered severe nerve and muscle damage. So it will be extra important for me to have the protective effects of that catheter that leads the chemo drugs close to my heart so they can get pumped around more efficiently.

So I'm resting now, reading, lounging, trying to forget the morning's pain. We've been scheduled for 6:45 a.m. arrival at the hospital's IVF suite. This means another pre-dawn trip into the big bad. I'm drinking electrolyte drinks now in an attempt to super-hydrate to make IV line insertion easier tomorrow. I'll also make sure to eat well, before I start my pre-op fast at midnight. Hopefully, this will make the nurses' job easier tomorrow, and spare me additional pain.

Depending on how things go, I may not feel up to posting tomorrow. On Thursday, we'll find out how many eggos they got, and how many of those could be persuaded to transform into little pre-embies. I'll definitely post after we find out.

Monday, May 11, 2009

Fixin' to let go of my eggos...

Today brought more monitoring, and blood on the first draw (even if she had to dig around a bit in the back of my hand). Overall it wasn't that bad. The good news is that my follies have grown quite a bit from yesterday, which means that tonight I had DH give me the trigger shot into the south end of a northbound me. This means that within 36 hours of that injection, I will ovulate -- and that I will have my egg retrieval on Wednesday.

I'm really looking forward to let go of my eggos and hope we'll have quite a few embies to turn into frosties for the better days to come. Keep your fingers crossed that I'll be a good laying hen and produce sufficient eggos which will fertilize sufficiently and develop and then freeze well.

Tomorrow morning I have yet another monitoring/presurgical appointment. This time we have to be at the IVF center in the big bad city -- deep breath -- at 6:30 a.m. So we'll be up before the crack of dawn once again. It'll be good practice for the egg retrieval on Wednesday, as we'll need to be at the hospital in the big bad city at that same early hour. I suppose the road to parenthood, just like parenthood itself, involve very little sleep...

I'll get to sleep through the retrieval, though, as they will be kind enough to give me conscious sedation. Last time they gave me that I apparently talked a lot, although I do not remember any of it. I did not realize I could be that talkative in my sleep, but maybe I didn't sleep and just didn't remember it? In any case, let's hope I'll be better behaved this time. 

Talking about sleep, my next surgery (oh how much fun is it to say that: "my next surgery" -- like I'm a surgery addict or something...) has been scheduled for May 26. That day, Dr. R will implant my mediport so that when I'll get my first chemo on May 28, there won't be any of that desperate hunting for a decent vein that promptly blows up when poked with a sharp object.

So anyway, it looks as though the various procedures I will need in May have now been scheduled.

Things are falling into place as I make final preparations before the battle to completely and permanently evict that nasty TNBC from my body can begin in earnest.

Sunday, May 10, 2009

Happy Mothers' Day from a superovulating chicken...

Today is Mothers' Day -- and for the first time in a REALLY long time (we're talking decades here) I got to spend it with my own mom!!! It was really nice, even if I couldn't do terribly much (see below), and if we all got up way before the crack of dawn to drive into the big bad city for my Sunday IVF monitoring.

Another day of monitoring  meant another two needlesticks this time. I'm starting to get tired of this routine...and I am now officially out of usable veins! So tomorrow's monitoring should be extra fun. i'll be bringing both warm packs and ice packs to that appointment, in an effort to salvage what's left of the veins in my right arm.

In the meantimes, my follicles seem unimpressed by my plight with the blood draws and keep growing a very respectable 2-3 mm a day. This means that I'm starting to feel like a chicken that has to pop out a whole bunch of eggs in no time at all in a way that mother nature never quite intended. It's starting to get a bit uncomfortable, as my ovaries are simply not meant to be this size. If I weren't as special as I seem to be, they'd simply trigger me now, but with the letrozole my doctors have me take, this would mean immature eggos. So where other women get to go when the follies reach 17-18 mm (as mine did today), I have to wait until most of them reach 20-21 mm.

So I'll have to be a hormonal, superovulating chicken for a bit longer before they tell me to go ahead and  get the trigger shot (yes, yet another injectable medication -- this time an intramuscular one that DH will have to administer). So my egg retrieval surgery (or the assisted egg laying, as I like to think of it) will probably occur sometime later this week, anywhere from Tuesday to Thursday as far as we can tell at this point. So sorry, guys, but I'll have to remain non-committal on lunch and dinner dates ... My medical stuff just tends to get in the way of things.

Thanks for being so understanding of my flakiness. :) 

This weekend, DH was supposed to take me to the movies to take my mind off stuff a bit. The latest Star Trek movie is playing on a local IMAX screen, and we figured this would be a cool way to see it. As it turns out, not only didn't I feel up to meeting friends for dinner, but I chickened out of the movie, too, since sitting for a long time does not really sit with me real well. Those superovulating ovaries of mine simply take up more than their fair share of room right now, and they don't like being squished. So I'm spending a lot of my time lying and resting, hoping that those doctors won't be hyperstimulating me into OHSS (ovarian hyperstimulation syndrome, a serious complication that can result from IVF). But overall, things are going pretty well, for which I am very grateful.

Back to the day's Mothers' Day activities. I was going to cook and grill lamb chops and make some other stuff, but didn't have the energy. So instead, I sent DH to our favorite rib shack to pick up a platter. You have to know that my mom LOVES those ribs -- and she can't get them at home. So I figured she'd appreciate them as a holiday meal for her special day, which she very much did. It was fingerlickin' good! I wanted to go on a walk with the entire family later to take the doggie out, but this, too never materialized since I needed to rest. So we just sat a while on the deck, enjoying the sun and the back yard, where mother natures is springing back to life. I haven't had this much quality time with my mom since -- ever! And we're both really enjoying the time together in person, rather than our usual daily chats. A quiet Mothers' Day, but a nice one I hope.

Talking about spring, all kinds of things are springing back to life. Even the frangipani tree that my friend 1l brought back from Key West for me is once again starting to sprout leaves! The biggest one is almost two inches already, and others are following. I wonder how large it will have to become before it blooms.

Well, so much for my stream of consciousness -- must be the hormones talking, guys! I think I need to go rest up now, so I can face another bloodletting tomorrow -- and hopefully get the trigger soon so I can be on my way to ending my chickendom, and have those eggos popped out of me and ICSEd into little pre-embies-frosties that will await the time when the doctors tell me I'm good and ready to work on our dream of becoming parents again.

Saturday, May 9, 2009

Veins, poisons, and other fun stuff

Boy did my hand blow up after Thursday's digging expedition into the veins in the back of my hand... By evening, I could not even make a fist any more, let alone hold anything heavier than a pen. It was quite painful... So I was not looking forward to Friday's stick, and to the one after that, and the one after that, and the one after that...

The nurse felt badly about the previous day's bruising experience, and asked the doctor to lead the renewed digging expedition for Friday. After extensive searching, the good doc did find a suitable candidate and got the vein in one stick. That's the good news. The bad news is that the only suitable vein she could find is the one that has been stuck several times already in the half inch where it is usable

To top things off, I also had an appointment with Dr. V, my poison man aka medical oncologist, on Friday. Previously, they had only 'milked' one vial full of blood from a finger stick, so I assumed this visit would be no different. Oh was I wrong! They wanted FOUR vials of blood this time, as they are running all kinds of tumor marker tests and other stuff to determine my readiness for chemo. So they too needed to stick my poor veins! Needless to say, the only good vein they could find... was the poor thing that had gotten prodded already earlier that morning, and the day before.... I think it was the most painful stick of my life (so far) -- and it burned like crazy. Even an ice pack didn't manage to get through the burn and pain until hours later. Yikes! Not a good feeling. At least this morning's nurse was able to find a different vein to stick (it's so hard because my veins like to hide and roll, and my left arm is off limits due to the mastectomy and sentinel node biopsy). 

Turns out that they could have gotten the blood later if they had known. But the phlebotomist didn't seem to care when I told her I had gotten stuck there earlier that day and had been having problems with all the sticks due to the IVF cycle. Now I'm not letting them touch that vein any more, since I'm afraid it'll collapse. It's very tender and clearly irritated -- and I'm going to need it for the egg retrieval next week! Furthermore, I'll probably get my chemo port the week after, as clearly, my veins are very sensitive. So I don't want to risk getting chemo in those small blood vessels that pass for veins in my arms. 

The visit with Dr. V also clarified my chemo treatment. I'll be doing the toughest breast cancer chemo in town, which is known as dose intense ACT chemotherapy. Starting on May 28, I will be receiving four biweekly courses of a cocktail of adriamycin and cytoxan, followed by four biweekly courses of taxol. Fun stuff all three of them, which is why I have to get a MUGA heart scan on 5/18 so they can check later and compare to see if the drugs damaged my heart. They don't call adriamycin the "red devil" for nothing... All three compounds are highly poisonous to cells which is why they kill cancer cells -- but potentially also other, more vital cells in my body.

So let's recap: My immediate future contains at least two surgeries (egg retrieval and chemo port placement), a bunch more needlesticks and IV placements in my increasingly tortured veins, and the first of eight cytotoxic chemo treatments. What fun. But then again, even if it's hard to face all of this right now, it is an investment into my future!!! The chemo will drastically improve my chances of beating this cancer, which means the harder they hit me, the better my chances.

So I told them to hit me as hard as my body can take it.

Watch out future, here I come!!!

Thursday, May 7, 2009


My morning monitoring appointment went well in that my ovaries are responding to the meds, but it didn't go so well in that the nurse had the hardest time finding blood. It's not that I don't have enough of it, it's just that my veins do not want to part with it, apparently. 

The nurse tried in my right hand first and got only a few drops. My hand blew up really badly, so she moved on to my left elbow, but no dice (yeah, yeah, I know I'm not supposed to have any blood draws there, but I was desperate, ok!). Ditto for the first try on the right elbow, but then she finally got some blood. All of this took forever (in felt time) and made me late for my next appointment, not to mention scared for the next week. After all, I'm on daily monitoring now, which means daily blood draws. Let's hope they find a good vein tomorrow...but today definitely did not have a good vein day. Hopefully, by egg retrieval day I'll have one good vein left somewhere for them to put the IV for the sedation in... Keep your fingers crossed for me.

So tonight my hand is blue and swollen, my numbness much worse and I'm having trouble typing. Ditto with the general dexterity, which made the three injections hard. I feel like such a pincushion. Tomorrow I'll have TWO blood draws, actually. One for the IVF, and one for my poison man, aka medical oncologist Dr. V. But that one comes out of the finger at least... but still, OUCH...

It's all for a good purpose, it's all for a good purpose, it's all for a good purpose, it's all for a good purpose. I keep reminding myself of that...

Hopefully tomorrow will be a better day. 

Three things I am especially thankful for today:

That DH was there with me through it all to hold my hand. That the radiation oncologist Dr. B that I saw today was really nice, frank, and took me seriously. That my follicles are growing.

Wednesday, May 6, 2009

It's all for a good purpose...

Well, apparently the quiet days are over... Not only do I have more doctors' appointments for the remainder of the week, but I'm also on daily IVF monitoring now. Today it took two nurses to find some blood in my right cubital vein. Luckily the first one didn't dig around too much, so the second one could still use the same spot to suck some blood out of me. Everyone seems impressed that I come prepared now with hand warmers (in case they need to find veins there), and with a glass of water (in case I get woozy after the bloodletting). So keep your fingers crossed that my veins will tolerate the daily bloodletting from now on...

On top of everything, the side effects of the hormonal treatments are supposed to make me superovulate are starting to hit me. This means that I get the occasional hot flash, that I feel bloated, and that for the last two days, I've been battling a serious headache that just doesn't want to go away. Today I've started having food cravings, too. First sweets (I devoured a bunch of crackers with Nutella hazlenut chocolate spread on them), and now salty and sour (I'm noshing on some green bean salad in vinaigrette). I suppose it's like menopause and pregnancy all rolled into one. What a strange combination!

So I'm trying to remind myself that this is all for a very good purpose. The doctors think we may end up with eight eggs or so. Not all of those will be fully mature, nor will all of them fertilize properly, but we're hoping that we'll get enough embies to freeze that we'll have at least some chance of having a child after I'm done with the treatments. So I need to remember this when I'm not feeling so chipper: I'm investing in my future, in DH's future, in our future -- and most importantly in our potential future kid's future! And in the grand scheme of things, hot flashes, headaches, nausea and the rest of the side effects are but a small price to pay for that.

Tuesday, May 5, 2009

Quiet day

Quiet days are a good thing... I just wish it wouldn't be quite as cold, rainy, and dreary. If the sun were shining, I could take the dog for a nice long walk, but in this kind of weather, all we can do is play inside.

I had a nice working lunch with a friend. It is good to get out and spend time with friends, and to keep my mind busy with some work stuff for a while. Normalcy is a good thing.

I also got lots of good rest in today with a nice afternoon nap, even if I didn't have that much energy to tackle the rest of the work that needs to be done by Friday. It'll get done though, not to worry. I just need a bit more daylight! :) But the most luxurious thing today was that I did not have a single doctor's visit. Yay!

Monday, May 4, 2009

Oy veins!

Today I went to a local satellite of the IVF center in the big bad city for more cycle monitoring. Of course, each cycle monitoring is accompanied by yet another blood draw, and another dildo scan. I suppose it's a small price to pay for a chance at a future family, but my veins seem to be tiring of all the poking and prodding...

The nurses are having an increasingly harder time finding a vein from which to squeeze some blood. This problem is exacerbated by the fact that due to the missing lymph node and the mastectomy on the left side, they are not supposed to be drawing any blood from that arm. So that leaves only my poor right arm to deal with the onslaught of needles. So it's probably no wonder that my veins are hiding even more than they used to when they were being poked only once every few months.

Apparently my skin appears to be very transparent but really isn't. So there really aren't many good veins showing when they choke off my arm with the tourniquet. The veins really are there, but they need to be palpated by someone who really knows what she's doing with a needle. Plus, after a spot gets poked, it doesn't want to give blood again for a while. So we're slowly but surely running out of places to drill for blood. Right now, efforts have been concentrating on my right hand. It's still suffering from some residual numbness from the IV I had for my mastectomy, so it's not much fun when they poke around that hand some more. But just in case, I brought my own warming pad for my appointment this morning, as I learned at my MRI scan that those things do wonders to help make veins more visible. I guess their other patients aren't as fussy as I am, as they don't have them at the IVF center. With all the bloodletting that's going on there you'd think they have them -- but you'd be wrong, of course.

I am whining, I know. But I'm a bit worried about the whole bloodletting issue, particularly since I will probably need to go to cycle monitoring nearly every day for the remainder of this cycle. So there is a lot of potential future bloodletting to deal with, which comes with the requisite needle sticks. But I'll have to find a way to get through it all somehow...

The good news is that they've called me with my instructions for tonight and they've kept me on the same (ridiculously high) levels of medication for the next two days. This means no trip tomorrow morning for bloodletting and dildo scanning. Yay!!!

In the meantime I have lots of stuff I brought home from work to deal with and occupy my mind, as well as a really nice evening with dinner at a friends' house. So there are enough things to keep my mind occupied. 

Sunday, May 3, 2009

You've gotta advocate...

As I was shooting myself up with more hormones tonight, I was thinking about how we got here in the first place. And I was thinking about how none of the doctors really mentioned the possibility of fertility preservation in the first place. Actually, my oncological surgeon did not even think it would be possible to do in vitro for cancer patients. 

It is very, very sad, but it seems that few doctors are actually familiar with all the great strides medicine has made for cancer patients in the past few years. This is particularly true for cancers such as TNBC that tends to strike younger women who are may still be interested in having kids, regardless of whether or not they have kids already. Yet when younger women get cancer, they often also receive chemotherapy that may put them into premature menopause. So if the doctors do not tell young women that there are options for preserving fertility, then we lose so much more to the cancer than we really need to!

At least with the internet, we have more information than ever at our fingertips. But of course the internet is also a maze of bad information that is mixed in with the good information. I am lucky in that I am a researcher who is familiar both with the frame of mind of how research is conducted, as well as with statistics. This is why I can read and understand many medical research studies. I also know how to find this stuff, and how to tell which information is reliable and which is probably not. Still, just about everyone can find some stuff out there.

Nonetheless, shouldn't the doctors be the ones who are supposed to know about all of this stuff??? Shouldn't they be the ones telling me about these possibilities rather than me demanding that they give me what I need??? This cancer business is pretty invasive, so the goal should be to minimize the damage. Yet if I hadn't been an educated patient, I may not have had the opportunity to preserve a chance to have a child. I know just how lucky I am to have this opportunity in the first place. But I wonder how many other young women are out there, who are too overwhelmed by their cancer diagnosis to even wonder what it might do to their family plans. 

DH and I had been fighting infertility for a long, long time. So we were fortunate to know a lot about infertility issues, and to have already gone through the complete IVF workup before the cancer diagnosis. After all, we were supposed to start our IVF cycle merely three days after I had the surgery for the supposedly benign lump. So adding the fertility preservation IVF cycle means that I am not really losing any time for my cancer treatments, as I need to heal from surgery anyway before they can start me on the chemo. But again, if I had not been prepared, and if I had not pushed, pushed, pushed for the fertility presrvation, I am not so sure that the doctors would have alerted me to this possibility.

So tonight I am extra grateful for the opportunity I have, but I am also upset that it was something I had to fight for when it should have been offered to me. And I am upset that other young women may not be so lucky to know to demand fertility preservation treatment. So let us do what all patients ought to be doing: advocate for ourselves, because we are the ones who will have to live with the effects of both our diseases and our treatments. So we shouldn't be satisfied with anything less than the very best care available!

I would also like to send my love and support towards my friend 2l and her entire family who are currently hurrying towards her father's bedside. He has heart problems and is in the ICU. I hope that the doctors will find a way to help him, and that his family will be able to advocate on his behalf to make sure that he, too, receives the very best care available. You are all in my thoughts!!!

Saturday, May 2, 2009


No, I'm not getting onto a bike, but today felt like the first 'real' day of our IVF cycle. For the first time, I was taking not only the letrozole to protect my breast, but also took the first hormone shots.  Although I really do NOT like needles, it turns out that the subcutaneous ones do not really bother me much. The needles are really thin, so it's not a big deal. 

Apparently, what I really don't like is when somebody sticks needles into my veins. Let me correct myself again, I don't even mind when they stick needles into my vein. Rather, I mind two other things:  when they dig around to find a vein and just cannot find it (palpate for veins, dear nurses, don't just look -- mine know how to hide!) and when I get thrombophlebitis afterwards since my veins don't care for the mechanical aggravation nor the plastic thingie inside 

So I managed to give myself those injections with no problem at all. What a relief.  We are thus well on our way towards putting frosties on dry ice. Now my body just needs to do its part in response to all those hormones. To verify it does I will need to have monitoring sessions almost every day. During the week I can go to a satellite office closer to home, but on weekends we'll hav to trudge into the big bad again...

The day started cool and rainy, but improved greatly in the afternoon. so we went out for a decent walk while the sun was out. It was lovely, and I managed to walk up and down out of my own power and entirely without the backup of the wheelchair. That was exciting. 

So we continue on our cycle...

Friday, May 1, 2009

All pumped up!

Well, ok -- I'm exaggerating a bit... But today was my first appointment to have my inflat-a-boob, well, inflated. During my mastectomy, my boob man Dr. K placed a thing called a tissue expander into a pocket in my pectoral muscles. This expander is essentially like a breast implant, except it has a port so it can be filled with saline from the outside. This is done so that the muscle and overlying skin can stretch gently over time to accommodate an implant that approximates the size of my remaining boob. After I explained this to my friend no-l, she aptly likened the process to "yoga from the inside." And that's essentially what it is: gentle stretching over time to achieve new heights. 

So today I gained a bit of weight again, as Dr. K pumped me up with 100 ml of saline. And lo and behold, this tissue expander thingie (which Dr. K couldn't fill at all during surgery as my muscles wouldn't stretch sufficiently) is finally starting to look like a boob -- I'm sorry, I guess technically it looks like a foob (that is a fake boob).  But hey, if it had looked like this right away, I would not have been as upset after my surgery as I was. It even feels more balanced, too, which really amazed me since we're not exactly talking tons of weight here. 

In any case, one little pinprick and some saline later I feel lightyears closer to an acceptable reconstruction. And in two weeks, I get another 100 ml boost to my foob

By then I will hopefully have finished the IVF cycle successfully (it takes about two weeks from cycle start until the egg retrieval surgery) and should be waiting to hear how many little pre-embryos we managed to get that fertilized and are dividing properly. And a few days later, we'll hopefully be able to put all those little frosties on ice until my docs clear me to thaw them out and use them three disease-free years down the road. Can't wait to get there!!!!!!