My second piece is live on HuffPo, check it out!
My second piece is live on HuffPo, check it out!
As you know, I am all about posting the real-deal here. This is my personal experience with cancer. It’s not meant to instruct others on course of treatment etc. It’s just one girl’s story. If, however, I happen to help and/or inspire others to get out there and take action — well then I’m thrilled! I mention this because, recently, a fellow BC warrior posted excerpts of my blog for her friends and family to read (by all accounts the exercise has been very helpful for she and her loved ones — which is wonderful to hear — keep on fighting like heck and you will come through this with flying colors!).
However, one of her friends had some rather cutting things to say about my posts — and I was really, really upset by it. No matter what this particular woman might be going through in her life — to shit all over mine is not OK in my book. Below is what this person had to say:
[Dear friend who was newly diagnosed with cancer] Though the blog lady is clever and direct I think she is wrong in this respect—she is dwelling on some things that can easily- maybe not very easily- be ignored.
For example, my brother-in-law who has been bald for 50 years said- ” wear a hat or don’t bend under the cabinets cause it will hurt if you bump yourself.” So, slow down and don’t go smacking into furniture like the blogger with the refrigerator door.
Also, look to the goal. You will get your hair and boobs back and they will be cancer free.
I wish you an easy time through all of these tests and procedures. You are a strong and determined lady. My prayers and good wishes for a quick and complete recovery are being sent your way,
Life will get back to normal–really. xoxo, [E.L.][Full Name extracted]
My retorts to this person are (1) read my blog from beginning to end before you pass judgement, (2) try and be supportive of your friend and leave me and my journey out of it and (3) focus on the good in your heart and give your friend that energy, rather than looking for other people to tear down. You will fare much better in life if you take this approach.
OK, now that that diatribe is out of the way, I can update you all on this crazy week!
As you know, Tuesday morning we went over to UCSF to have my port inserted. G had called in a favor with one of his buddies (Dr. Jeff Pearl) and asked that he oversee my placement. Dr. Pearl did oversee the work, but Dr. Aggarwal (my Desi peeps!) actually placed the port. Dr. Aggarwal reminded me of my cousins Neal, Ravi and Niraj all rolled into one. He was WAY too young to be performing anything in a hospital (Neal & Ravi) and, like Niraj he had a really easy, yet dry and sardonic sense of humor about him. Even when I was splayed out on the table, bits showing for all to see, he made me laugh and set me at ease! Also, it was super strange that he looked like Nir’s doopleganger!
As someone who normally trudges all the way down to PAMF for procedures, to be able to get to UCSF here in the city held its pro’s and con’s — while we avoided the 1.5-2 round trip drive down to PAMF, we lost equally as much time waiting around at UCSF. When we first arrived to have my blood work drawn, they had no idea who I was or why I was there. I had to bust out all my info from G to help them get the orders called. So back to the waiting room until the orders came through. Then we got lost on our way to the port placement office. We ended up in the chemo room. So, after asking for a few more directions, we were on our way! We checked in and, to be truthful, we were about an hour early (because they scheduled my blood draw for so early). So we just sat and sat and sat. I have to say UCSF is very busy. Maybe PAMF is as well, but it’s just less obvious and the nurses and coordinators are a bit more friendly. Who knows, I’m probably biased at this point! We eventually got called in to meet with Dr. Aggarwal who went over the procedure with us in detail. He said he might do a different sort of entrance for me because my spacers are still quite high after my bi-lateral — but he’ll consult with Dr. Pearl. While I haven’t inspected the site since it’s still bandaged, I do think he ultimately ended up threading the port above my spacers and even above my collar bone (G looked at it yesterday and said it looks beautiful and the stitching is masterful!).
Next, Paul is ushered out of the room and I am left to wait alone. Eventually I go to a women’s changing room and change into my robe, lock all my personal belonging into a small locker and head into the recovery room — which is pretty full, so they just sit me in a corner in a chair while the work on discharging the other people and freeing up a bed. After another 20 minutes or so of just sitting, I get moved to a bed and have an IV placed in my left (surgical) arm. This IV will administer my “twilight” anesthesia for the procedure (they don’t put you fully under for a port).
I wait some more and then the surgery nurse come to get me. I like her right off the bat. She is right out of central casting and exactly what I needed in that moment. I finally felt like I could breathe and was in good, un-rushed hands. The set up in the operating room actually takes about 20-30 minutes. They moved me to the operating table, hooked up all the vital sign patches, cleaned and sterilized the surgery site, then covered and taped it up to keep it clean,. Then they draped my entire body in a giant plastic bag. It was super claustrophobic at first. But they eventually opened a little side “window” on my left so I could look out of it and not feel buried alive.
For the procedure itself, which took about 30 minutes. I had to twist my neck to the left so that the doctor could easily access my neck and veins. The twilight worked well, all I felt was tugging and pulling. Then it was done. I was sent off to recovery for 30 minutes. The doctor checked in with me and said all went well. The discharge nurse had more distressing news for me. I was not prepared for this at all. I can’t shower or get the surgical site wet, can’t lift more than 5 pounds and can’t fully extend my arm above my head (all for 5 days). That means sponge baths and no PT this week. That is worse than after my bi-lateral. I was in the shower within 24 hours of that beast of a surgery. Ugh. I’m usually so good about rolling with the punches — but I need to be mentally prepared for them in order to steel myself against them!
Look, I know it’s not that big a deal and your probably thinking that to yourself right now. Trust me, I say it in my own head “Andrea, come on! If this is the biggest of your issues, you got it good. Snap out of it!” But on that day, after my pain meds wore off, and I could feel that somebody had been cutting and digging inside my cheat very close to my heart — I lost it. I did. Throughout this whole ordeal, I’ve held it together fairly well. But on Tuesday I cried more than I’ve known myself to cry to date. I was just in so much pain and it was so unexpected. Everybody told me a port is so routine — it’s like going to the dentist. Well, it was a bit more involved than that for me!
Fortunately, we had lots of extra vicodin on hand, so Paul just got me on a regular schedule of those and helped make me feel as comfortable as he possibly could. By the next morning, I was feeling a lot better. It’s true, tomorrow is a new day and things will almost certainly look better then!
We had no time to waste, the next morning we were due at Garrett’s for my fourth and FINAL AC infusion! I arrived an hour early to get a massage with Lisa. It was wonderful. She was able to work around my port site without incident and I left the room feeling relaxed and ready to take on chemo.
My white blood cell count came back elevated — which means no neulasta shot this week. THANK THE LORD. I did, however, have my high-dose Lupron shot done yesterday (remember, we are doing this shot to help quiet my ovaries during chemo). The worst side effects of Lupron are constant headache and hot-flashes. But I suspect chemo is giving me those same things with equal fervor! So, I just deal!
So here’s the bit most of you have been waiting with bated breath for … the port rocked! Administering 4 various IV bags (Zophran, Emend, Cytoxan mixed with Saline and just straight Saline) was a breeze. Tasha did extract any extra air that may have accumulated in-between each bag — btw that’s just because she’s super anal retentive — which I LOVE and admire about her! Air bubbles close to the heart scare me as well, so suck those babies out as often as you please!
Garrett pushed the dreaded red devil without incident — though we both admitted we were slightly on edge. How could we not be after the last time. So happy to report it was a breeze!
After all that was done, Tasha did a blood draw right from my port and then flushed it with Heperin (?) two times. She did this to be sure the veins and tubing don’t get clogged.
The infusion room was really busy yesterday so had lots of folks to visit with. Some we’ve met before others were new. We had a great time exchanging stories and hammin’ it up. One couple brought their puppy, Henry, in for a visit and Garrett rolled around on the floor with him. See, I told you, it’s like one giant family at my Oncologist’s!
After Garrett finished pushing the A the whole room clapped and hooted and hollered for me. I cannot BELIEVE this portion of the shitty programming is finally behind me! YAY! Such a great milestone to celebrate with a room full of people! So moving!
I did a little look back, and I am in week 16 or month 4 of this journey (I count from diagnosis and include surgery and recovery time from the same). I have the rest of this week and next week off, then I start 12 weeks worth of weekly T infusions. 3.5 months still sounds like a lot to go to me — but I’m sure it will fly by.
Alrighty, we are supposed to have two beautiful days of weather here in SF — it might even get into the 70’s. Today is my last “good” day before I potentially go down for the count from this last infusion. So I am going to attempt to wash myself and head out and run errands for the day. I think I deserve a little retail therapy today!
I haven’t posted in a while because I haven’t had anything good to say. This week got the best of me and I am down and out emotionally. It’s been 7 days since the Adria leak and my arms are still killing me. I fight with myself everyday to try and stay positive and not let this process get the better of me — but it’s been a serious struggle.
Since I don’t really have anything inspiring to offer any of you today, I’ll just recap our experience last week. On Tuesday I went in for my AC infusion as usual. All was fine until the Adria push. As you know, Garrett was administering the drug personally and decided to stop the push after I kept complaining about it. Once we arrived home, Garrett called us to tell us he’d reached out to some colleagues about what happened and they suggested that I get the antidote. He explained that he was in the process of locating a practice and/or hospital that had the antidote in stock. Apparently the stuff runs around $10,000 a pop (yikes). He said he’d already spoken with CPMC and they didn’t have any, but he was about to call in a favor over at UCSF, where he used to work. In the meantime, he’d ordered the second and third infusions to be delivered to his office the next morning for me — so we knew I’d be getting those from him directly. It really just came down to where and how I would get the first infusion on Tuesday night.
The scary part about all of this was that I had to get the antidote into my body within six hours of the onset of pain. So we were up against the clock. Garrett called us back within 30 minutes or so and told us to head over to the UCSF ER. I was sent with strict instructions. He told me that my name would be flashing on their screen as a high priority and that I should not wait more than 5 minutes upon arrival. WHOA. He also said that he wanted them to avoid inserting another IV anywhere near the vein he had used. His preference was to go higher up on that same arm or to use a vein in my surgical arm (which I thought was completely off limits for ever more — but apparently not in a situation such as this).
So we arrive, and Paul drops me off. I walk in on my own because he has to go park the car. They were waiting for me and I was escorted to the back past a room full of other patients quietly waiting in the ER. Everything was really rushed. They took my vitals but didn’t ask me for my insurance card. Not really sure what that was all about — hope we don’t get served up some insanely huge bill in a few months.
I hear the nurse talking about an emergency that’s coming in and then one of them impatiently asks “Wait! Where the girl with the arm?” to which the nurse who is taking my vitals, replied, “she’s right here.” Holy crappers, they really were waiting on me as a high priority — this must be really serious.
Paul arrives and we are moved to a room down the corridor. The ER is really busy and you can hear people wailing in pain. It’s really distressing. Once in the room, I down my hospital gown and climb into the bed. Within a few minutes, I realize there is another patient in the room with me, we are separated by a curtain. But that curtain can’t conceal her utter crazy! From what I could gather, she was an elderly British woman with the flu. She kept hacking up a lung and screaming out for food. That’s when I insisted Paul and I don surgical masks. Hell if I’m going to catch the GD flu while at the ER.
A few more minutes pass and a male nurse comes in and says he has 10 minutes left on his shift, so he’ll be inserting my IV for the infusion. I instruct him on where to place it per Garrett’s orders. Then someone from the chemo lab came up with the antidote bag (BTW, the drug is called Potect (aka Dexrazoxane)) and she said that while the bag says to drip it over 2 hours, she wanted him to do it in 90 minutes. (Just a quick aside for all of you who will inevitably go on to research and Google Potect and all of it’s side effects, please keep all the information to yourself. I have no choice but to put my 100% faith into this drug and assume it did more good than bad to me — so if you learn otherwise, just do me a favor, and spare me. I really don’t need more information to make myself crazier than I already am).
Flash back to the male nurse who is now feeling the pressure of getting this IV in before his shift ends and is also feeling the rush of getting this antidote dripping within my 6 hour window — and enter unmitigated disaster. He went after a vein around my right elbow area and failed MISERABLY. He got the needle in fine, but when he was threading the plastic bit, it hurt like a bitch. I looked at Paul for strength and saw him gasp and hold his hand to his mouth. Then I felt it — wetness all over my arm. Blood was shooting out everywhere. It was all over my gown, the gurney, the floor and me. Seriously? Seriously! It looks like a bear attacked my arm at this point.
After this goes down, I tell the nurse to just use my surgical arm. So he went in and placed the IV without too much trouble. Then he placed the antidote bag and set it to two hours. Paul had to correct him and tell him to make it 90 minutes. OMFG.
During our 90 minutes, I was visited by the ER resident as well as the doctor in charge of the ER. They did all sorts of neurological and strength tests on my hands and arms. Interestingly, the resident confessed to me that she’d never heard of the drug they were giving me and that Garrett had called in very specific instructions on what he wanted them to do for me. I suppose I was an anomaly to everyone in that ER! She said she was going to go research it and would be back to explain what the drug was doing. WTF?
Eventually she did come back and tell me that the antidote has a 96% cure rate and it works by circulating throughout the bloodstream and protecting my cells from harmful free radicals that are created by Adriamycin. I felt a lot better hearing this news. I also felt better knowing that the antidote wouldn’t undo the Adria that I did have in my system. It would’ve sucked to have to repeat the third infusion all over again.
So, we eventually are discharged and head home. The cancer blues have fully settled into my bones at this point. Paul and I argue in the car about the fastest way to get home. I am just crabby and beyond uncomfortable.
The next two days (Wednesday and Thursday) see us back at Garrett’s office in the late afternoon. He administers the second and third antidotes into my surgical arm and keeps a watchful eye out over me. By the third day, I was stupid enough to do some Googling on my own about Adria leaks and read that amputation may be involved HOLY FUCK. It was that day that I lost my shit. I was just quiet and inconsolable. I didn’t speak to Paul the entire drive up to Garrett’s office because I was so stuck in my head. The pain in my arm wasn’t getting worse, but it wasn’t getting better. Would I need my arm chopped off on top of all this other fucking shit?
When we arrived for the third infusion, Garrett could tell I was at my wits end and he assured me that amputation was not going to be needed, that the Adria damage had been mitigated and that it would take a couple weeks of pain to get my arm back on track. He continued to check in on us every night and reassured me that all will be fine.
We have to go back to see him tomorrow so he can get a really good look at my remaining veins and make the game-time decision of whether I need to go have a port inserted prior to my fourth, and final AC infusion. We are assuming, he’ll say go with the port. So I have that to look forward to for the duration of chemo. Ugh. Oh, and the half moons on my fingernails (well my thumb nails and my pointer fingers only, so far) have started to turn black. I hear this is yet another lovely side effect of chemo. I cut all my nails down short and am going to walk over to the Scarlett Sage Herb Co on Valencia later today. I hear that rubbing tea tree oil into your cuticles can help you avoid having the nail detach from the bed entirely. Jesus Christ.
What a shitter of a week. Early on I tried to be a trooper and put together cute outfits. Doing this always makes me feel better. But you can tell by the end of the week, that I’m totally fed up. But, I’m including all these pictures here for you to see, because this is what cancer looks like this week for me.
Hopefully each day will get better from here. Hopefully my energy and sanity will be restored as quickly as they left me. I have a lot of social commitments to look forward to this week, hopefully all of that will help pull me out of my funk. If not, I may have to do some retail therapy right quick!
OK, enjoy these pictures, they are all over the place — just like my mind today!
I bet all you breast cancer survivors out there read my last post and thought to yourself, “Yeah right honey — you just wait. Chemo will suck WAY more than your spacer fills. You’ve just been in the chemo honeymoon stage.” Well, this is me going on record admitting I was wrong and you were right. Chemo is bad news.
Today was my third out four AC infusions. On the upside, I only have one more AC to go and my good friend Tegan kept me company along with Paul today. It was so nice catching up with Tegan! She’s about to have a baby in a few weeks — so getting some QT in before the baby arrives was really special.
I arrived at Garrett’s office an hour early for my massage with Lisa. It was wonderful and relaxing. Then I went to the infusion room and met Paul and Tegan. Garrett joined us shortly and reported that my blood work shows that my white blood cell count has dropped and that I will have to do the Neulasta shot tomorrow. This was really sad news to me — but I secretly knew it was coming. I could feel it in my body this past week. I am getting weakened.
The Neulasta shot is the one that tells your body to make more white blood cells in your bones. Many friends that have gone down this chemo path before me have said that this shot is the absolute worst. It makes your big bones (think hips) ache like there is no tomorrow. I’ve heard that it can literally render you immobile and ultimately confine you to your bed for a day or two.
I have to give myself that shot tomorrow and it will kick in on Thursday and Friday (which is also when my worst post-chemo day will kick in — oh joy!).
If that isn’t bad enough, we had issues during the Adriamycin push. Recall, that Adriamycin is also known as the “Red Devil” and is highly, highly, highly, highly toxic. That is why Garrett administers it personally. It does not drip from an IV. As he started the push, I was happily eating my Popsicle (to try and avoid mouth sores), but it started hurting. I said something to him about it but I couldn’t quite tell if it was just the coldness of the medicine entering my arm, or actual pain. Then towards the end of the syringe, I told him it was really hurting. This time I knew it was pain and not just temperature. He pulled the drug with 10cc’s left to go. Said it was better to be safe than sorry and we’ll make that amount up next time. He then added an extra bag of saline to flush my vein and gave my two ice packs for my arm.
What we suspect happened was my vein was weakened from the prior two chemos — both of which went into the same vein and went off without incident — but this time around, my vein just couldn’t take it anymore. I don’t know for sure if we blew this vein entirely or not, but suffice it to say, the Adriamycin got out of my vein and entered my system — which is why it hurt so much and is swollen. So next time, we will do the infusion in a different spot. Good times, egh?
When Garrett came back to check on me, it still hurt and was very swollen. He decided that the second bag of saline was making things worse and it would be better to pull the IV out altogether and just ice my arm. So we did that and hung around for another half hour or so. The weird thing is, I have swelling and pain at the IV site (which is right by my wrist) but I also have a TON of pain travelling up my arm through my other veins. It feels like my entire arm is one giant bruise. It’s also stretched down into my hand. This cannot be good. FML.
Garrett didn’t seemed too agitated by any of this. My discharge orders are to take Prednisone and ice it for 15 minutes 6 to 6 times a day. He is going to check in with us tonight and again tomorrow morning to be sure all is well.
Damnnit all to hell. I thought I’d be able to get through this one as easily as the others. Arrogance always bites you in the ass kids. This is a lesson to be learned.
I’ll report back more later. I’m going to rest for the balance of the day. I deserve it. Ugh…
FUCK, Post script. Garrett just called and said he is worried and wants to give me an antidote ASAP. I have to have another IV for the next three days to combat the leak. He is worried that the leak will essentially “burn” my vein and tissue. And we need all my veins in my non-surgical arm because we have a lot more chemo to go. Unfortunately, Garrett doesn’t have the antidote on hand. He is going to work with another hospital to track it down and get me the infusion tonight. I have to have it within 6 hours of the onset of pain.
Well, no resting for me. I have to get dressed and head back out. FUCK MY LIFE.