My second piece is live on HuffPo, check it out!
My second piece is live on HuffPo, check it out!
Another tidbit for the category of ‘shit nobody tells you about cancer and chemo’:
Yup, that’s right. I finally went to my dentist after I was all done with chemo, and I have $2500 worth of dental work that needs to be done. I had a cracked tooth, an old crown needs to be replaced and I need a new crown. And that’s just the stuff my dentist said was a “high priority”. What?
OK, so if you track back through my blog, you’ll see that during ACT chemo, patients are not allowed to floss or really go after cleaning their teeth on days 3-5 post chemo infusion. If you’re getting chemo every week, that doesn’t leave much time for dental care. You’re pretty much laid up on infusion day and the day after. Flossing is not at the front of your mind — not barfing is. Then, by Day 6, you’re just starting to freak out about your next infusion, and again, thoughts of flossing go out the window once again.
No wonder I was always complaining that my teeth ached during chemo. They were all rotting and breaking.
So my dear readers, if you’re currently on this journey. Please do your best to actually floss on Days 1,2, 6 and 7. Your pocketbook will thank you, I promise!
So today is our fifth day here at CPMC. Not clear that we’re getting out of here anytime soon. We hope to do a few more tests today that will confirm an infection and then we can treat it appropriately. In the meantime, I thought you might like to see a run down of all the stuff I’ve had done to me (oh joy!)
20 vital signs (blood pressure, oxygen saturation and temperature)
2 blood cultures from a vein in my hand
2 blood cultures from my port
1 chest Xray
1 chest CT scan with contrast
2 salt-water induced sputum tests
12 different nursing shifts
3 different Hospitalist attendings
1 Infectious Disease attending
1 Oncology attending (We conference Garrett into all of our convos too)
8 blood draws (for CBC’s, WBC count, and other misc tests)
8 heparin shots to the belly
3 broad spectrum IV antibiotics: (1) Zosyn – every 6 hours, (2) Vancomycin – every 12 hours (3) Zithromax – every 24 hours
1 ultrasound of my expanders and port
Constantly hooked up to heart monitors (that set off alarms every time I stand up to go to the bathroom b/c my heart starts racing as high as 150-160 (aka tachyachardia))
and, last but certainly not least, 3 showers 😉
As you can see, there is a lot going on — it’s no wonder we aren’t getting much sleep. The nurses have to slip in every hour or so to poke and prod at me.
Perhaps they’ll page Dr. House today so he can solve my medical mystery!!
Alight, I’m off to have another test done. Ciao for now….
Just a quick update. I got admitted to CPMC 😦 I’ll be here for at least one night possibly two while we await the results of my blood culture tests.
I woke up this morning with a fever of 101.6. Garrett said he wanted me to go get a chest X-ray. My family said I should get way more than that. They wanted to see a urinalysis, and blood cultures in addition.
So I told Garrett that’s what I wanted. He said I’d have to go to the ER for that. I said fine (not sure if he was resisting me and annoyed or just being matter of fact because our exchange was via text).
We got to the ER and the attending was heavenly. He ran all the above tests and then some (like the flu test — which hurt like a bitch — and an EKG).
All tests came back clear. However we are still waiting on the blood cultures. They can take 24-72 hours to come back. So I will be here getting IV antibiotics until then.
For now, the doctors think I might have some crazy virus or my port is infected.
On the upside I got a private room on the cardiac floor and my fever is gone for the time being.
Paul just went home to grab a few things for me and then we are going to hunker down.
Here’s a pic from a few mins ago. You can tell I’m feeling better. I’m totally multitasking! Shhh don’t tell my mom (I was on the phone with her when I snapped this)
Thank you for all the love and support today on Facebook. Your healing vibes are coming through loud n clear. Please keep them coming.
I’ve HAD it. I’ve reached my breaking point. For those of you who want to read about sunshine and rainbows, this isn’t your post. For the past week and a half to two weeks, I’ve been fighting this low grade fever and I feel like nobody is LISTENING to me. I don’t feel well. I don’t feel right. I feel chilled to the bone, ache-y and extremely fatigued. I think “bone-tired” best sums it up.
When we texted with Garrett he told me to take tylenol and zyrtec-D and to let him know if the fever broke 101.5. Because at 101.5 your body is officially fighting an infection. Well, even at 100.9 — I assure you, I felt like complete shit. Especially when it went on for days upon days. But there were no obvious signs of infection at my port, so it was either just a side effect of the Taxol or an infection. Only time would tell.
Over the weekend, we went to Seattle for the C4YW conference and I still had my low-grade fever — so I was back in the hotel room every night by 5 and asleep by 8:30 — what a waste. By the time we landed on Sunday night my fever rose to 101.4. Still not 101.5 — so I took Tylenol, let Garrett know and told him I’d check back in on Monday (if my temperature remained high the next day, he’d want me to come in for blood work). I’ll post more on C4YW another day — when I’m in a better mood.
Monday morning we had to go to PAMF for two different appointments. One at 10am with Dr. Leibowitz and one at 2:30pm with Dr. Hong. Since Palo Alto is so far away, we’d have to kill time between appointments — I wasn’t looking forward to this because I was still feeling really sick. At my 10am appointment, they checked my vitals, I was at 100.4. Dr. Leibowitz suggested I talk to Garrett again (I told him I’d be seeing G the next day and he would be drawing blood etc).
After that, we were off to kill time between appointments. Paul decided we should go sit outside at the Stanford mall so he could do his work and take his 12:30 conference call. Oh joy, I am chilled to the bone and have to sit outside for 2 hours (no I couldn’t walk around and window shop — that’s how tired I was. I thought about going into Nordies and napping in the ladies lounge. I always see women in there breast feeding — so why not let a cancer lady take a nap?). Even in the direct California sun, I was still cold in a v-neck t-shirt, underneath a long sleeve button-up underneath a puffer vest and jeans tucked into Frye boots. I reached a new low, I was that beat-down, crazy cancer lady who sits by herself on a bench in the middle of the day at the outdoor mall. WTF?
Then, to add insult to injury, we finally get to my appointment with Dr. Hong and he wouldn’t fill my expanders because I was running a temperature (don’t get me wrong, I’m thankful his decision was one to keep me out of harms way — but I wish I had known, because we could’ve just gone home after our first appointment and avoided the mall fiasco altogether).
Dr. Hong also said that the tissue at the top of my left breast is getting weak so he wants to avoid a fill right now because that would just further stretch the top of my boobs, which is not what I need right now. I don’t know if that means he will never fill my expanders again and I’m stuck with the size boobs I have now whether I like it or not. All I know is he said I need to wait another 4 weeks before coming back to see him. That means it will have been over 11 weeks by the time I get my next fill (IF, I get another fill that is).
The shittiest thing about cancer is you have NO control over anything (well, you can control your attitude and outlook on things — which I’m clearly having a hard time with right now). You have to surrender yourself to it. You have to put 100% of your faith in your care team and loved ones, even when they might disappoint you.
Fast forward to today — “chemo Tuesday” and I woke up still feeling like shit, surprise, surprise. Tears streamed down my face as I told Paul that I didn’t even have the energy to take Lucy out for her morning pee. The thought of walking downstairs to the backyard was too much. I think he thought I was being overly dramatic — so he gave me a pep talk and told me to put on some shoes and take her out — it would be good for me. Which I did — but I felt dizzy and weak the entire time. After that, more tears appeared as I sobbed to him that I REALLY didn’t want to go to chemo today. I couldn’t fathom getting another infusion that would make me feel shittier than I already did. They tell you Taxol is supposed to be way easier than AC — but I am here to tell you that they are lying. Yup, supposedly Taxol #1-9 would be fine but 10,11 and 12 would be rough because of the cumulative fatigue. F-that noise. That is a complete lie. All of Taxol sucks the life out of you — at least in my limited experience thus far.
When I got to Garrett’s and they took my vitals, I had a temperature of 102.2. NOW maybe somebody will take me seriously. Garrett walked in and it was patently obvious that I looked like complete shit, in fact, I overheard him tell Tasha that “she feels like shit and looks like shit” ha! In any event, he said that some people do run a low grade fever on Taxol but that no chills would be involved, in fact, they’d be none the wiser. But since I have chills and look like shit and finally crossed the 101.5 threshold, he could rule out low-grade Taxol fever. He wanted to check my white blood cell count. He said that if it went up since last week, it meant I was indeed fighting an infection. He also listened to my lungs and said that they sounded bad. He said that I likely have walking pneumonia and that we’d be skipping chemo today and dripping IV antibiotics instead (my WBC count did indeed come back elevated week over week).
As mad as I am at the world right now, I’m so happy I finally got some antibiotics on board. I couldn’t have gone another day feeling the way I was feeling. Garrett said I should feel like myself again by Thursday (I’ll take the rest of the antibiotics in pill form starting tomorrow). Hopefully that’s true and my next post will be less of a downer.
When we moved from Russian Hill to the Mission, the thing I missed most was hearing the sound of fog horns. Only on rare occasion (read: really foggy days) do we hear the ships’ siren song down here.
This morning must be one of those exceptionally foggy days because I woke up to the delicious sound of fog horns. I love me a foggy SF morning!
I feel like the horns are calling out to me to get out of the cancercoma that I’ve been in the past few days. So here I am….
This week marked week 1 of my Taxol infusions. I’m happy to report that, so far, all is going well. We went into Garrett’s Tuesday morning. As usual, we went in an hour early so that I could get a massage prior to my infusion. For me, getting a good rub down relaxes me and puts me in the right state of mind to face the infusion. I highly recommend this if your onc offers integrative services.
Garrett explained that he would be giving me an IV bag of benadryl before chemo because some people have an allergic reaction to Taxol. He said that they would be dripping the IV very slowly and monitoring me closely. If I had a reaction, they would take care of the symptoms and move me to Taxotere instead of Taxol. If I couldn’t tolerate Taxotere either, there was a third chemo drug they could move me to (I can’t recall the name of the third drug). He patiently explained the side effects we could expect with each of the three drugs. With Taxol, he said that I may experience peripheral neuropathy (numbness and tingling of the hands and feet) and/or muscle pain. On a scale of 1-10, the pain would register around a 3 or 4. He likened it to working out really hard, and waking up sore the next day (ie. the day after your very first Bar Method class!). Other than that, I could expect general fatigue. He gave me a shot of B-12 to help counteract the muscle pain. In addition, Natalie (my nutritionist) told me to take my Glutamine powder twice a day on days 2-5 to help counteract neuropathy.
I told Garrett that I’d been fighting a killer headache for about a week or so, so he gave me two big IV bags of saline as well. I was amazed at how well they worked, and shocked at how dehydrated I had been. I thought I was doing a good job of drinking lots of water — guess not!
When they gave me the benadryl bag, it knocked me out almost immediately. I slept for hours (pretty much through the entire infusion)– it was heavenly. Paul later confessed that he wished they could give him some extra bags to take home with him to feed me when I get to be too much 🙂 lol
In any event, here I am at day 3 and no side effects so far. I’m still keeping up with PT twice a week. If there is one thing that I can stress to anybody out there who is about to go through this process, it’s to find a good PT. I am so grateful to Julie Wong and the work she and her team do for me. Julie really focuses on opening up my gut and getting my digestion and drainage working. She believes that opening up proper drainage helps your body to better navigate all the nastiness of post-surgical recovery and chemo.
I am so blessed to have such a great team working on my behalf. Between Garrett’s personal attention and integrative practice, Julie’s hands-on manual PT AND my amaze surgical team at PAMF, I am in really, really good hands!
Final tidbit for you all. My scalp has been really stubbly of late, so I sort of got it in my head that my hair might be starting to grow back after AC (I’ve met survivors whose hair has grown back during Taxol), but alas, it was only wishful thinking! I asked Julie about it at PT yesterday and she said that when my hair grows back post-chemo it will be like peach fuzz. So if it’s still like a five o’clock shadow (which it is) it’s just that chemo hasn’t killed all my hair follicles just yet. That sounds about right to me because my nails are still growing too. All I have to say is this damn medicine had best be doing it’s job. If I have to suffer through months of chemo — it better be killing any lingering cancer inside of me. I don’t need stubble or nails — just kill my cancer….
Attached is a cute pic of my niece and I the night of the Superbowl. I haven’t sported the bald look in front of her yet. Not sure how she’ll react just yet. So I suffer through my hot flashes with my head encased in fleece around her. At the onset of my diagnosis we sat her down and walked her through everything (diagnosis, surgery and chemo) — my brother led the conversation and eventually got to the point where he told her that I would have to take medicine that would cause my hair to fall out. My heart broke watching her process all the information. Her eyes got really, really big and she couldn’t really look at me. She just looked at her dad and quietly asked “all of it?”
Through all of this, she’s been a trooper. As drugged up as I was post-surgery — when she came to to the hospital, basket of flowers clutched tightly in hand, I could tell she was really scared to see me with all the wires, monitors and acting dopey in general. At our next few visits, hugs were a little less forthcoming! But, as you can see below, she is settling in well. Perhaps it’s time to rip the bandaid off and show her my head. I think she’s ready!
Apologies that this post is sort of all over the place — but it’s my first after a self-proclaimed cancercoma, so please cut me some slack! Alright, I have to run, lots to do today. Ciao for now.
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!