It's done.

My husband just finished shaving my head. I must say it is a look I never thought I would sport, and it is not very becoming, but it is done. This morning my hair started falling out in huge clumps everytime I ran my hand thru it, so I decided it had to go. Let's just say I'm thankful for my wig, scarfs and hats... 'cause bald is not my thing.

On the bright side, it will grow back... and hopefully not gray :-)!

"Hairy" Kiri

Well, my hair has started to make a slow release from my scalp. Yesterday, the amount of hair that left my head was significant. I realized the death of my hair had begun when my one year old grabbed my hair yesterday and pulled out a huge handful with little effort on her part. I've already decided I won't be putting up with the slow loss of my hair and will be shaving my head when the loss of my hair dramatically increases, creating messes in the sink, shower and floor. I am hoping this will happen after Wednesday, as it is my oldest's birthday and I don't want her to remember her day as the day mom went bald.

I do have a wig and several hats and scarfs. I really don't think I will be much of a wig person, but it is hard to say right now. Since most of my bald time will be in the spring/summer, I imagine a wig would be very hot and scratchy, so I am thinking hats will be my preferred head covering. But I won't know until I am going thru it.

Chemo #2

I am officially done with 50% of the really bad nasty chemotherapy (double dose). This morning I went in and had my blood work checked, met with Oncologist and got my second treatment of chemotherapy. It was very uneventful, thankfully. And the ladies in our local Infusion Therapy room are very helpful and sweet. My Oncologist did add an additional anti-nausea medication, so I am now on 7 prescription meds... 2 for my asthma (which has been acting up horribly the past month) and 5 to treat post chemo nausea. It is really hard to keep all the meds straight and the dosing right. I told my husband that he should write me an application for my itouch, so I can keep track of meds on it and have reminders of when to take the meds.... the perks of having a computer geek (said in the most loving way of course!) for a husband :-). I guess I could just use a pen and paper, but that sounds so boring :-).

I did get my port stitches removed today and that feels wonderful! They were snagging on my shirt and itching something horrible, so I was not at all sad to see them go. I am now free to shower, bathe and swim without having to cover the incision. Yeah!

My next three treatments will have to happen in GF. Since the chemotherapy I am on is so strong, the Oncologist wants to personally see me for the remainder of these treatments. And then I will be switching to a different chemotherapy regime, so he would like the first dose of that done under his direct supervision as well.

On a side note, I have come down with a nasty head cold. I've felt it coming on for the past week, and finally, on Wednesday, I lost the battle. I'm sure my lowered blood counts from chemotherapy didn't help. Those who know me well, know that I HATE head colds. I can't sleep with all the congestion and the head cold aggravates my asthma. I've already been having a hard time with my asthma. Add all the congestion and coughing that comes with a head cold, and I am feeling miserable. I haven't sleep well the past couple of nights. So I am shouting out with a prayer request. Please pray that I can sleep! My husband and kids will thank you (and so will I) :-)! 'Cause the saying is right, "If Mama ain't happy, ain't nobody happy!".

I've been slowly trying to get thank you notes out, but unfortunately I am behind. I will keep plugging away, but I would like to let you all know how much you have blessed us thru all of this. So many people have taken care of us in so many ways... meal making, baby sitting, gifts, prayers, notes, messages and cards of encouragement, and phone calls. All of it means so much to me. Thank you!

I am fully prepared for the next few days to be rough, but we will make it thru. I have my stash of anti-nausea meds, frozen meals (thank you Bible study friends!), and I am so thankful for my very helpful and supportive husband... so we will make it! Thank you for your prayers!

Mashed Potatoes

Our trip to GF on Monday was uneventful for the most part, until we decided to eat lunch. I'd been nauseated and eaten so little for so long, that my husband was thrilled to hear me say I was hungry for mashed potatoes and gravy for lunch. So being the awesome guy he is, he searched for a KFC and ordered me a large side of mashed potatoes and gravy all for myself, which we picked up in the drive thru. I immediately pulled out the container of potatoes, opened it up and took a fork full.... mmmm it was so good! I was just getting ready to pull the container of gravy out of the bag to add to the potatoes when I felt something very hot against my leg. The lid on the gravy had become dislodged and hot gravy had spilled out of the container, into the bag, thru the bag and onto my lap. So I quickly set the potatoes on our center console in the car and tried to rescue my leg from the burning gravy. At the exact moment I set my potatoes down, my husband turned a corner and the open container of mashed potatoes flipped and landed open side down smack dap centered in my crotch. So I had hot gravy on my thigh and piping hot potatoes piled in my crotch. I started shrieking at my husband to pull over so I could get some relief from the burning potatoes and gravy, but there wasn't a nice place to pull over right away. So I quickly scooped as much of the potatoes out of my crotch and back into the container as I could and waited for my husband to pull over. Once we pull over, I stepped out of the car and bent over with my butt facing on coming traffic and began peeling layers of mashed potatoes out of my pants crotch with a gravy soaked KFC napkin. I rescued my legs and crotch before burns set in and my pants became somewhat presentable, but my dignity was long gone.

Thankfully, I'd rescued enough of the spilled food to satisfy my fleeting craving. And we got a good laugh out of the deal, as well!

Turned the corner

Ok, it's official. I'm a chemo wimp. The side effects of chemo SUCK! I would sooner go thru having a baby with no pain meds then sign up for another chemo treatment. At least with child birth I always had the energy to fight thru the pain and work with the pain. I still felt like me and somehow stronger and more empowered at the end. (I'm sure having a baby to hold at the end helped.) With chemo, it zaps your energy and makes your brain feel all icky and foggy... in short it feels like it is sucking the life right out of you. I don't feel stronger or more empowered from chemo... yet... maybe that will come after my 15 other treatments... sigh.

I was not prepared for what chemotherapy would take out of me. I thought that maybe 2 or 3 days of feeling like I had the stomach flu and then I would feel like myself again. That did not happen with me. I spent most of Saturday thru Monday flat on my back with stomach flipping nausea and extreme exhaustion. By Tuesday I could be up in small spurts, and every day has gotten better, but I wouldn't say I feel 100% yet. I'm actually wondering if I'll hit 100% by my next treatment.

But with that being said, I am so thankful for how God has provided for us thru all of this. Monday night, my husband was feeling really bad about having to leave me to go back to work on Tuesday since I was still feeling very ill, and my husband's Aunt called and offered to come help for a couple of days. She has been up for the past couple of days taking superb care of the house, laundry, cooking, kids and myself. She was my life saver this week, and I am so thankful for her and what she did. Her taking care of us gave my husband the freedom to return to work and deal with some pressing issues, since he had been out since last Wednesday. Thank you Aunt Kathy!

On another good note, we have gotten some good news in the after shocks of our first chemo treatment. Yesterday, GF called and the pathology came back on my axillary cyst as clean... no cancer! It is so nice to get good news!

I consider this first treatment of chemo a good learning experience. I have learned that chemo hits me very hard, and no matter what I would like to be capable of, I know I won't physically be capable of taking care of my one year old or two year old for 4-7 days after each treatment... not safely anyway. Taking care of myself will be a challenge enough. And thru this all, my husband still has to have a job at the other end of it, and has to function in that area of his life as well. He can't stay home week after week getting further and further behind at work. This first treatment of chemo made me realize I needed to do a very tough thing. Yesterday, I signed my two smallest children up for daycare.

I am very thankful to have found a daycare to take them and who is understanding about our situation. I know they will be in excellent care and will grow thru this experience. They will make new friends, be in an excellent environment and learn to adapt to other surroundings. And I know I need this time to heal and recover from very harsh medications. But I feel horrible. I'm supposed to take care of my babies. I'm not even signing them up for daycare so I can have a career and be productive and make a difference in the world. I'm signing them up so I can stay home and lay in bed for days on end. Yeah me! (Yes, I am a little sarcastic.)

I will meet with my Oncologist the day of and before my next treatment. I'm hoping he will have some different antinausea meds to try this time around. I was on four different medications and was still struggling. There has to be something better out there. Maybe I can beg him to put me in a drug induced coma for the week after treatment? (Only kidding :-) ).

Chemotherapy One

I got four drugs administered during my chemo session. The first drug I was administered was Zofran, which in an antinausea med. The next drug (Desamethasone) was a steroid, and I need to clarify exactly what it was for next time I have it administered. My understanding at the time was that it was to minimize the chance I would have an allergic reaction to the actual chemotherapy drugs, but now that I'm thinking about it I think it may have been for nausea as well.

Next came the actual chemo drugs. The first was Adriamycin. This drug had to be push fed by a nurse thru a syringe (into my port) for the entire treatment. It actually was a very pretty dark red drug (often referred to as "The Red Devil") and was a very climatic way to start chemo. I got to watch that pretty red poison travel from the syringe, down about 2 feet of clear tubing, right into my port (next to my heart). I wanted to scream and celebrate all at the same time. This was the only drug I felt any kind of immediate physical change with. Within a minute or so of the drug entering my port, the roof of my mouth and back of my throat got itchy... nothing drastic, but definitely there. I immediately told the nurse administering and she put the brakes on and consulted another nurse. The second nurse asked if I tasted anything? Yes, it was a weird taste. The closest thing I could come up with was maybe what it would taste like if someone sprayed perfume and you got a tiny bit in your mouth.... bitterish yuck would be the non-technical description. She said this was a common side effect in younger women and we could proceed (under supervision). The remainder of "The Red Devil" was administer with no complications.

The final chemo drug is called Cytoxan. This was definitely the most time consuming part of the treatment. The total time spent administering all of the drugs was a little over 2.5 hours, I think. Once we were finished, we headed over to the pharmacy to pick up my three prescriptions for antinausea medication.

The day after treatment I have to receive the Neulasta shot to help my bones produce more white blood cells since chemo kills white blood cells. So today, I head to my local hospital for that shot. Then on Friday, I go in for blood work, so they can check my blood cell counts.

My next treatment and a followup with Oncology will happen on the 26th of March (right before my two oldest children's birthdays) at our local hospital. I should expect to lose my hair shortly after that treatment. I'm hoping my hair hangs on long enough, so my kids don't have a bald Mom on their birthdays.

Side effects: So far, I haven't experienced much for side effects. About 4 hours post treatment, I did start to feel nauseated, so I took one of my meds and since getting out of bed I have had to take another. But once that medication kicks in the nausea isn't so bad... more like what I felt being in the first trimester of pregnancy and know I wasn't going to throw up, but still feeling very woozy. The steroid drug administered causes insomnia, so I really haven't slept at all. I am exhausted, but my body won't seem to fall into a deep enough relaxed state to actually sleep. I've had some minor stomach pains as well.

Precautions: During treatment I learned something that none of my pretreatment reading told me. Apparently, the chemotherapy drugs I received can be transferred to other people thru my bodily fluids. And I guess this stuff is so nasty that they don't want to chance anyone being exposed to even a residual amount thru me. (Doesn't make me feel great since full strength is being ran straight thru my veins, but it must be better then having cancer). So I have to take special precautions.

The first precaution is double flushing. For the first couple of days post treatment, every time I use the bathroom, I have to double flush. And they also forewarned me that the pretty red chemo that goes in red, comes out red. And it happens immediately. I had to pee so bad after getting all those drugs and drinking 4-5 cups of water during treatment, that I stopped at the first bathroom I saw and sure enough, red pee.

In addition, I cannot kiss anyone for a few days post treatment. Apparently my saliva touching their skin is bad. So no kisses for my kiddos or hubby(and obviously, nothing else for hubby either... poor guy). My youngest son had a really hard time with no bedtime kiss, because we have a silly bedtime routine that he loves and part of it is a kiss. It took quit awhile to calm him down when he realized he wasn't getting a kiss. And my kisses are owie fixers for him as well. He could be traumatized by a bump and all I have to do is give a small kiss and all is well. What am I to do now?

Also, I have to drink a very large amount of fluids the day of and for a couple days after treatment (3 quarts). Apparently, they want the drugs in long enough to do their thing and then out as fast as possible. So the more I drink, the faster the drugs are removed.

Oncologist (Take Two)

The Oncologist seemed to be having a much better day. Much more relaxed and less in a tizzy. He was comfortable with how we are proceeding with the axillary lump and he agreed with me that the cough I've been dealing with for a week and a half was my asthma flaring up, so he started to set up a chemo start day.

Initially, he wanted to start Tuesday, but I told him I'd prefer a Friday start day (since you have to keep the same day of the week throughout chemo, if at all possible) so my husband could be home to help with the kids on my roughest days. He thought that sounded like a good idea, but really didn't want to wait another week, so he asked if we would be willing to do chemo right then and there in GF. Thankfully, Barb E. had kind of warned me this may happen, so I'd had a little time to prepare myself emotionally for that possibility, so I agreed.

Port Placement

Friday morning, we left my in laws early in the morning for my port placement surgery. I had to get an IV placed and for the first time in my life the nurse had a hard time entering my vein. Being poked once in bad enough, but being poked multiple times is downright miserable. I was kind of glad this happened, because at that point I was pretty sure I'd never regret my decision to have a port.

They gave me a dose of antibiotic, and then we went into surgery where they gave me some drugs which broke my "give a care". I technically wasn't put under, but I did have a good nap. I do remember bits and pieces of the procedure, but nothing too traumatic or painful. Basically, I remember them cleaning the surgery site (right below my right collar bone), injecting the numbing agent, some painless pressure and them stitching me back up.

I do have some pretty serious bruising, and feel pretty tender, but Tylenol does relieve most of the pain. I have to leave the bandages on for three days, and have the stitches removed in 10-14 days, and then it sounds like the port is pretty maintenance free, on my part.

Ear Infection

On our trip from home to my in laws (where we will stay during our GF doctor appointments) Thursday morning, our youngest cried most of the first part of the trip. We finally stopped an hour into our trip and dosed her with Motrin, as she had been grabbing her ear and screaming "OWIEEEE". This was the first indication I'd seen she may be fighting an ear infection and of course it happened right as we were leaving town for two days and right before the weekend as well.... Murphy's Law. When we got back to my in laws from our GF appointments on Thursday afternoon, she woke up from her nap and was obviously in extreme pain again. So I called the local hospital and found out they offered Urgent Care, so I took her in to be checked.

We waited quit awhile to have the doctor look at her for about 1.5 minutes (I didn't expect much more from Urgent Care), and yes, indeed, she is fighting an ear infection. The doc said he'd write a prescription for antibiotics and he told me to pick up an over the counter cold medicine for her and left the room. After he left, I started thinking, do they even make over the counter cold medicines for toddlers anymore? I didn't think so, but decided I'd ask the nurse when she brought in the prescription. I waited and waited and waited (how long does it take to write a prescription?). I'm guessing it was 30 minutes or more and finally the nurse said they were waiting on a dose of Tylenol with Codeine in it from the hospital pharmacy for my daughter (15 months old) that the doctor had already ordered (without asking me, might I add). I looked at the nurse like she was crazy, and opened my mouth to say "Don't you think that is a bit overkill?", but then I stopped myself. I brought my baby to Urgent Care to have the doctor take care of her. He obviously saw a reason why my baby needed such a strong pain killer (probably the fact she was screaming for most of the hour and a half we were there), so I decided to let the doctor take care of her as he should know what medications are beneficial and safe. I did ask the nurse about the cold medicine and she told me to ask the pharmacy. So my daughter took her Tylenol with Codeine and we got her prescription for an antibiotic and we headed for the pharmacy.

I asked the person working the pharmacy about cold medicine for a 15 month old, and he looked at me like I obviously was a clueless first time mom (I only had my youngest with me). No, they don't manufacture cold medicine for that age group, as it is not safe for them to take. Exactly as I thought. I told him the doc told me to get some for her and he said "Oh, did you have doctor Q...?" And of course I said yes. He proceeded to tell me that that doctor didn't know and was kind of clueless.

Why didn't I trust my motherly instinct and tell them to keep their Tylenol with Codeine? That my baby would be just fine on over the counter Tylenol and Motrin? In reality she was just fine having taken it and was pain free for quit some time afterwards, but I felt like a horrible Mom for letting them give my child a medicine I wasn't comfortable with and not going with my instincts. Thankfully, there was no harm done, lesson learned, and life goes on.

Axillary Ultrasound and Consultation

When I showed up for my Ultrasound, the tech actually asked me what she was supposed to be ultrasounding. I was relieved, because I was still wondering if I was going to have to convince her to ultrasound my axilla and NOT my nonexistent breast. She didn't seemed too surprised to be ultrasounding my axilla, but after taking a few pictures of my swollen area, she did leave to go talk to the doctor. This kind of freaked me out (and she was gone a long time), because part of me was convinced that was bad news. It was just hard not to think that after my last ultrasound of a lump turned out to be picturing my breast cancer. In reality, I really think the tech was planning to ultrasound my breast and when I told her axilla, she probably didn't know exactly what kind of shots the doctor was looking for, so she was just doing a thorough job and verifying she was getting the doctor what he needed.

The ultrasound pictures showed my swollen area as this huge black void with nothing inside. The edges were very smooth and defined, which we later were told is an excellent indication of a benign (noncancerous) situation.

We then went to meet with the General Surgeon. He was very nice and informative. He even asked details about my breast cancer, and told me he knows Mayo did a fine job, but he would have handled my situation just a little more cautiously. He said he would have removed more lymph nodes (on the right side, where my cancer was noninvasive, and Mayo didn't take out any lymph nodes) and he would have taken out just a tiny bit more of the breast tissue. My surgeon at Mayo had gone thru with me why he was choosing to do things the way he did, and I was (still am) comfortable with how he did the surgery. The minuscule increase in risk of breast cancer recurrence was not enough to offset the other risks taken by removing extra lymph nodes and tissue. I think this surgeon in GF may have been a little more risk adverse in a breast cancer situation, since his wife has battled breast cancer twice in the last 9 years.

We reviewed our ultrasound images with the General Surgeon in GF and he was very relieved to see the images looked very convincing we are dealing with a fluid filled pocket which is residual from my mastectomy surgery and lymph node dissection. He actually left the room for a few minutes to go consult with a Radiologist to get his/her opinion on my situation. The Radiologist's opinion was watchful waiting for three months, but the Surgeon just wasn't that comfortable with that idea. He said he would like to aspirate the pocket and send it to pathology just to verify. He said the procedure is so simple and riskless that it would be foolish to not do (considering I had breast cancer) the verification that we are not dealing with a spread of my breast cancer.

So we go back to GF on Monday to do the axillary aspiration of the fluid filled pocket. It should be a very simple procedure lasting less then fifteen minutes.

The Circus Has Left Town

Boy, I don't know what went down between our first visit to GF and this Thursday, but one thing is for sure, it was a TOTALLY different experience. I honestly showed up feeling a tiny bit concerned for my safety after what went down last week. Seriously, it appeared to be a whole new operation. I think we came into what created the perfect storm last time (new computer system, rushed doctor, poor handwriting, back-up scheduling nurse, and a complicated situation). I did give someone at our local clinic a call, who I'd been told is excellent at advocating for local patients with GF and asked her to verify that I was indeed showing up for the correct appointments at the right times (every time I talked to GF I had different times and types of appointments told to me). So Barb E. took care of that (she had said it was still messed up when she called) and things went so smoothly after that. Thanks Barb E.!

Seriously?!?!

Ever since walking thru the door of Altru in GF last Thursday, I feel like I have entered the "twilight zone" of the medical world. Absolutely every dealing I've had with them has left me dumbfounded. I'm hoping I've dealt with the last of such antics, but I have a feeling that is not the case.

They called this morning asking me to forward my Mammogram and Ultrasound films from Mayo to them. Sure, no problem... I contacted Mayo and had it taken care of in a matter of minutes. Then later, I started thinking, "Why do they need my breast mammograms and ultrasounds, if they are doing an axillary (arm pit) lymph node ultrasound and biopsy?". Oh well, no worries... they will have the films and that is what they wanted. Fast forward about 3 hours and I get another call from yet another department at Altru asking me to get them my mammogram and ultrasound films from Mayo. After explaining to them that I had already received a phone call requesting those films (they had no clue I'd already been contacted) and had already taken care of it, I proceeded to ask why they needed them. They said they wanted them for doing my left BREAST ultrasound and biopsy. Seriously?!?!

Ok, I wouldn't expect just everyone I talk to to know that I received a double mastectomy, but I do expect a medical facility that has had my medical records forwarded to them concerning my breast cancer treatment and that is taking over my medical care for breast cancer to know that I had a double mastectomy. So I proceeded to explain the fact to the caller that I was supposed to be getting an AXILLARY ultrasound and possible biopsy, and that I had just gotten a double mastectomy. They had no clue!

I have a feeling I know how this misunderstanding started. It started with our Oncologist's poor handwriting. He wrote down the orders for the axillary ultrasound and biopsy and then handed them off to a nurse to schedule. While we were standing there waiting for the nurse to schedule the appointments we overheard her setting up an appointment for a breast ultrasound and biopsy. We corrected her and said it was Axillary. She kind of gave us a funny look, stared at the docs handwriting and said "huh, is that what that says?" and continued on making our appointments. So apparently either, A) she didn't believe us (and didn't take the time to verify), or B) she didn't care enough to go back and change the mistake she had made.

So I have a feeling that when I show up for my Ultrasound on Thursday they will be expecting to ultrasound my nonexistent breast.

Miscommunication

Well, GF called today, and apparently between doctor, nurse, and scheduling there was some sort of miscommunication. We are scheduled for both Thursday and Friday appointments. The ultrasound and biopsy are scheduled for Thursday with port surgery and Oncology on Friday.

Discouraged

Well, today we met the Oncologist who will be overseeing my Chemotherapy. To be honest, I was not impressed. He was very late, and seemed rushed and disjointed. I don't know if this is how he normally is or if we just caught him on a bad day. (Or maybe Mayo just spoiled us rotten :-) ) Or maybe he was just truly baffled by what he found while he examined me and that threw him off, but I honestly left the appointment feeling very confused. You see, he examined my surgery site, and while examining me he felt in my arm pits and discovered a rather large lump (that I had already noticed a couple of days ago) on the side I had the invasive cancer which he thinks is a lymph node. This seemed to concern him, even though he said it would be very strange that it would actually be cancerous, being that the sentinel nodes were removed and found to contain no cancer. He said he had never seen anything like this post surgery and needed to look into it further.

So as it stands now, I go in to our local hospital for a MUGA scan to get a baseline test of my heart function before I start Chemo, since one of the possible side effects of chemo is damage to the heart. Then on Thursday, I go back to GF to have an ultrasound taken of my swollen lymph node and if they deem it necessary, a biopsy as well. Then I have a port for chemotherapy surgically placed and then I meet with the Oncologist again. Hopefully, at this point we will have a better idea of a chemo start date.