Starting Chemo March 2015

Oh...anyone else having balance problems? I seem to lose my balance easily. I haven't fallen, but I feel like I need to hold on to something when I get up.

And yes...my family is watching me like a hawk too! I wipe my nose or clear my throat and they descend on me like I've just hiked into Death Valley without water! Jeez...I guess it's nice to be loved but c'mon...a lil space please!

Bekah

good for you Bekah for reading that chart! And even if you don't feel great, by gum you even look good in a freakin' mask! Lol

Eileen, what s simply resonating, riveting post for me to read. I ponder all the same questions. No answers. People go away. Don't understand. People come back. Grateful. Joyful. In the middle of all this. Like the eye of the storm. And Penny is adorable

If my husband or my grown kids ask me one more time are you pooping ok? feeling ok? mouth ok? tired? doing ok? somebody is gonna get smacked lol. Last night, I got to bed, all cozy and into my smutty romance novel, and my husband comes up and starts interrogating me about how I feel, etc. Seriously - "did you poop ok? Do you have gas? Does your stomach hurt? How's your mouth?" I said listen, I'm trying to relax and go to sleep, you have been sitting downstairs for 3 hours on the computer watching motorcycle racing, and now you want to come up here and bug me when I'm trying to read my book? Are you trying to get me spun up and upset right before I try to go to sleep?

I kind of felt bad afterwards - actually, not really lol. Since when did my bathroom habits become a media event?

Katy, roflmao. Seriously, most of the time everybody is good, but it's like they are all waiting for the OH MY GOD! event to happen. I feel like seriously telling them one day, "well when I brushed my teeth this morning, I filled the sink with blood and half my teeth came out." Or something like that lol. I think what outsiders don't realize is most of the damage is INTERNAL. They aren't gonna see it, I'm just gonna feel it.

Bekah, you have great eyebrows!

I had to go to the surgeon's office this morning because one of my internal stitches was starting to come out through the skin! It says something about the past 2 months of my life that it no longer a big deal to get a numbing shot in my boob and then have a 2 inch piece of suture pulled out of it, I guess!

oh Molly! I am sorry. That does in fact say a lot.

A LOT.

I guess maybe I come from the point of view of not always knowing the right thing to say so I have a lot of tolerance for dumb comments.

Hi Ninjamary and all. My infusion today went without incident, but boy, am I tired. I find that I get dizzy easily, but my blood pressure is on the low side all of the time. It goes up when I'm feeling unwell, but today's, pre-infusion, it was 100/55. My "normal" bp is 95/60, so I'm pretty sensitive to any decrease. Post surgery, there were days when it was 80/45, so I'm careful about standing up too fast. Katy, if chemo makes it go down, I'll take care to get up extra slowly from now on.

My MO has given me two MORE anti nausea meds, to add to the ones I take already. Maybe that will keep the queasiness at bay a bit better this round. However, the warning sheets for them list some pretty dramatic side effects of their own. It's just another friendly reminder that nothing is "free" here in medicineland

Katy,

I've seen you mention your dmx pain and I wondered if you'd elaborate a little. I had a left mx January 26 and the other side February 6th. I've been going to physical therapy every week but I'm so tight across my scars- I have the constant feeling like I just can't wait to take off this freaking tight bra (ironic right? Who'd have thought the most irritating feeling you get with breasts would be the one feeling that youre left with after they're gone!)

So I'm wondering if this is what you're feeling too? I started getting manual lymphatic drainage treatments a few weeks ago as I notice such swelling under my scars at the end of the day, more on the side with lymph nodes removed. That has seemed to really help the tightness. My physical therapist says it'll resolve with exercise and stretching, I was curious about your progress in that regard and anyone else whose had a bmx without reconstruction?

Slothabout, I was really a bad patient. From the early days (and I was alone, taking care if drains, etc., which didn't help), and had an abnormal amount of pain. I had really bad nerve pain shooting up and down from just under the surgery site, through the area where they scraped, up to just under the clavicle. I had really intense burning pain radiating along the incision, from armpit to armoit. I had what felt like phantom pain in breasts that were no longer there. I had ice packs running 24/7. I tried to make it 6 hours for pain meds, but during then worst of it, I set the alarm for every 4 hours, but woke up crying in pain before the alarm went off.

At about six weeks I went for a physical therapy eval, with a woman who was trained in working with mx patients, and whose mother is a 16 year survivor of bc. So she got it. Unfortunately, though they thought I had not a moment to lose, it proved too early for me, and the experience set me back weeks. Then I caught a nasty, nasty case of bronchitis. The spasmodic coughing was so painful to the entire area, I just cried and cried. It was truly a living nightmare. I thought it would never never end.

Eventually, very slowly, once the bronchitis cleared, I began to make progress and returned to physical therapy. My range of motion has improved. But I still have pain. Less burning pain, but now what I think they call cording. It feels like a bra of barbed wire. It hurts where all the extra skin is under my arms, it's hard to sleep in any position but my back, which is not my natural sleeping position. I stopped PT after I got my port because the area was once again very sore. Then I thought I'd try again, but my script had expired. The pcp dropped the ball, then with starting chemo, I'm just not sure I'm up to it. I think I should try. I was benefitting from release massage, the tens unit, and the exercises.

On any given day now, I try not to take any pain meds till late in the day when it hurts worse. Pain ranges 24/7 in the 3-5 range, which is a big improvement from where I was. It's very frustrating to deal with the pain, plus the fear, and the chemo SEs, which today included two new ones, rectal bleeding and a horrible rash all around where my underwear would go, if I could wear it. All reported to the Onc office.

Despite this 90 days + of sheer hell now, I somehow feel things are getting better and I will get past this. My BS ran out of patience with me and basically turned me over to the MO, who has been much more sympathetic. I worry a lot that my consistent use of pain meds over such a long period of time is going to create new and unpleasant problems. But it has gotten the best of me. I cannot live with the pain, and the fear of cancer, and the future, and the present of chemo. It's just too much for me to ask of myself. I am honest with my doctors about how much I take and when, and since I am getting better, though very slowly, nobody is giving me lectures about addiction.

I'm sorry for the long post. I don't know if I answered any or all of your questions. I hope so. If not, I do believe I was an unusual case, and because of a high tolerance for pain meds and a low threshold of pain, I have been in the worst possible position. I hope you feel better soon

hey all- i'm super tired, please forgive me for not reading everyone's recent posts.

since friday morning things got weird and bad. i thought i was having a reaction to the port placement the day before (i'd also gotten a lupron shot that day as well)- dizzy, nausea, cold sweats, the area under the wrap on my arm was swollen and super bruised (i have adhesive allergies and latex allergies so no tape or tachyderm on me).

i killed or maimed my laptop that morning (writing now on a spare). and while heading to the apple store to see what miracle they might be about to perform, i called the procedure center to ask if i should come in and have the port checked. they said yes. after dropping of my computer with a super nice manager genius (without an appt) and barely avoiding throwing up on him i headed to the hospital. the port center checked everything out ok (wrapped a new band around my arm looser this time) and sent me down to the cancer center to check about side effects from the lupron. they gave me the side effects card (all symptoms except for the arm matched) and sent me home. i crashed from the symptoms and the next morning was feeling a little bit better.

a Dear Friend came over to help me shave my head (i'll post pics, i promise). and as i was doing it, i was getting the nausea and lightheadedness and cold sweats. my fever was climbing a bit, but nothing to freak out about. there was redness on top of the bandage and some itching underneath that had me concerned. i called the procedure center again and spoke with the on call nurse- she thought it was probably phlebitis, thought it was too early for an infection to be apparent. she had me put hotpacks on it, which felt really great, and to monitor it. i watched it as the day went on and the redness and swelling were moving up my arm. at around 6p after going to a crazy weird pot doctor for a special letter allowing me to get medical marijuana (surreal, a regular prescription from your md will not work, i tried that first), my friend and i headed over to the emergency room. 3 hours later we were seen and the attending er doctor was debating whether it was an infection (it was) or blood clot (it wasn't), oh and i can now add the theraband to the items i'm sensitive to- definite contact dermatitis- im down to gauze and fishnet on all wounds whoopee! they admitted me overnight for heavy duty iv antibiotics. they released me yesterday, but not without a lot of confusion. the attending internist had no idea about my case so he was sending me home without understanding that i was supposed to be taking steroids that night to prep for chemo the next day (today). after he said i can't take the steroids and the antibiotics together - and his opinion was that i was 90% not going to have chemo the next day. i asked him to consult either my MO or whoever was on call for him. 2 hours later i got back the message through the very sweet but very clueless nurse that the doc says don't take the steroids, just go to your regular appt in the morning-- except that my REGULAR appt is Chemo that i needed to take steroids to prep for. i had no drs appt scheduled. i asked the nurse (again super sweet, but not really bright) to get me the on call MO on the phone so i could talk to him before i would agree to be released.

2 hours (again) later i spoke with the on call doc. at first he was kind of short and jerky with me until i explained that i had been in the hospital the day before to check on reactions i was having. then his tone changed and he told me not to take the steroid tonight and to call the office when it opened to see who they wanted me to go to to get the arm checked before anything else happened.

i did this this morning and got word back from my MO to bring in the antibiotics (not to take them) but to take my chemo morning dose of steroids and get over to the hospital. depending on my labs chemo was on. freaking out. i pulled it together (i really thought i might have gotten a day or 7 break) and got to the hospital. turns out keflex is ok to take with steroids (ok not great) and is definitely ok to take with chemo. so i'm done with #2 and it's been a trip. feeling ok now, small headache and getting used to the idea that i'm bald (now that all the crazy is over, that's sinking it), and am super tired.

tomorrow is fluids and the dreaded neulasta shot (i've been taking claritin today to try and help avoid some of the pain..we'll see). i'll catch up on everyones posts then.

sorry for the loooong post.. sweet easy FULL nights sleep for all of you tonight. see you in the chair tomorrow.

xxo

michele

Thank you for sharing your experience Katy. One of the many things I've learned through this forum is that no matter how much we share in common through diagnoses, our responses to treatment, Including surgery, are often on completely opposite ends of the spectrum. I'm sad your recovery has been so hard. I was just feeling sorry for myself tonight because I couldn't manage to mow the whole backyard, when I should've been grateful that I could manage the lawnmower at all. Right now I struggle with remembering when life was "normal" before surgeries and chemo took over, then I resent my current limitations. Time to get out the gratitude journal and do some soul searching! I hope everyone who visits the chemo spa this week has an easy go of it. I also hope everyone gets a little dose of the beautiful warm sunny weather we're enjoying here on the west coast. I recommend the feeling of the sun shining on your bald head-it's exhilarating! Sunscreen mandatory.

Hi

My husband and I rode for years. We had a Swedish war blood (Annie), a German (Schatzi), an a wonderful Appalousa. All three have passed - after our son was born we did not have as much time to ride. And the expense- Schatzi and Lucky lived into their thirties - Annie died of cancer around twenty four. Anyway, horses mean more to me than almost anything. We did eventing, but as time passes I loved the feel of horse and rider dressage brings. But jumping cross country was a blast.

Best of luck to you always

Michelle- what a horrible, frustrating couple of days. I am shocked by what you had to go through. I hope things calm down a bit for you now and that each time they learn a little more about you. And can adjust and treat accordingly.,but what a nightmare. Thinking of you and sending a big hug