Update!

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!

xoxo

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10 thoughts on “Update!

    • Hi Melissa! I am all over the place with my head coverings! The big, think, long scarves I wear are by Stella & Dot. Feel free to shop my personal website and grab a few — not only do I work for Home Office, but I’m also an Independent Stylist! (My PWS is: http://www.stelladot.com/andreasieminski). The frilly swim-cap looking ones came from my oncologist’s office. They have a hat swap there. All the hand-knit skull caps come courtesy of my mother in law — she’s been knitting me them for years. I keep telling her to open an etsy shop! And the floppy purple, fleece one is actually a neck warmer for skiiing — I like it because it provides a little ventilation during my hot flashes 😉 Hope that helps! xoxo

  1. Andrea, I started following your blog a few weeks ago & love it! Im 35, live in the peninsula & was diagnosed with IDC back in Nov. like u, a bilateral & am currently undergoing AC taxol (round 1 down – what a nightmare!). I gotta send u a private message – we have so much in common! Anyways, I had to comment on this post. I have read every single post you’ve written & have laughed, cried & been made braver from them. Thank u. The woman u reference above is a moron. Don’t ya just love it when someone who has no idea what BC/masectomy/chemo/ port pain/numb chest back/ etc is like – professes their ‘advice’?! Makes me crazy!!! As for the no shower after port – what??? I got mine in 2 weeks ago & bought a giant tagaderm (waterproof bandaid thing) slapped it on, & showered like normal. Maybe ask Garret if u can too? My best to u – you’re a beautiful & brave chick. I hope this last round of the red devil is easy on you girl. Xo

  2. Pingback: Cancer, Work and Perspective | The Old Fashioned

  3. I thought about this reply for a while and whether or not I should really but it does make me angry to think that some people still feel the need to be so judgemental about other people’s issues (regardless of their importance) when it is obvious that they have no idea. One of the hardest thing you have to deal with when you get diagnosed with cancer is the loss of control. Your body is sort of betraying you and suddenly you are in the hands of doctors who decide when you have treatment, what you will get, how often etc. Then the side effects take their toll too in deciding when you will feel ok, if you will be able to live a normal(ish) life and whether or not you will keep your hair! It is pretty callous and completely lacking any sort of compassion for someone to say “it’s only hair, get over it!”. That would be true of the women who sign up to America’s Next Top Model, a show known for their drastic makeover – especially of the girls with the long hair! – and then cry over it…They chose to apply, they chose to go their and they can still choose to walk away….we, cancer sufferers, can’t! I cried when I realised that I was going to have chemo and lose my hair…My hair was always my pride and joy.
    Two of the biggest symbols of one’s feminity (breast and hair) are being targeted by this disease and for someone to dare to say to any of us to “get over it” is absolutely shocking to me. I have a new respect for bald men, as I suddenly feel what they feel – cold up there! – but at the same time, their hair loss is not synonymous of a disease that can potentially kill you (hopefully not of course)…not only that, but suddenly, you cannot pretend to the rest of the world that nothing is wrong with you. Whether or not you want to, you have to explain to people that unfortunately you have cancer…and then have to deal with the change in the way they treat you (potentially…lucky for me, people still treat me the same)…So lady with the opinion…think before you speak and until you have to deal with such a trauma…because it is a trauma…try to walk in our shoes for a moment and then we will see how easy it is for you to get over it!
    I have embraced the baldness now (although, I am lucky I still have some fuzz)…but it was harder than it looks!
    Keep on fighting and lots of love to you!

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