Starting Chemo March 2015

Hi everybody. I'm just emerging from Round 2, which is a little disturbing to me because Round 3 is Monday. It's been a rough ride this time. Some things were better - I had a terrible bout of constipation after Round 1, which did not end well. It eventually settled down, but I didn't want to go through that, ever again. Soooo, for Round 2, my medical team has had me on three different laxatives, all taken continuously. That has worked, after a fashion, but it has meant that I have had diarrhea basically all of the time. On balance, I prefer diarrhea. My nausea was worse this time around, and it is only in the past day or two that it has eased up. I have been eating on a fairly strict schedule, and have arrested the almost a pound a day weight loss from the first ten days of round 1. The fatigue and bone pain were worse, and I've been in a dense chemo fog. I've managed to get a bit of exercise most days, but not much.

Even when I can't keep all of the posts straight in my head, I really enjoy reading the exploits of everyone who is able to maintain higher energy and activity levels than I am able to muster. I remind myself that this is NOT a competition - we all do the best we can. Sometimes the best we can do isn't a lot, but I have noticed that things can change quickly, so whenever I feel a bit better, I try to take advantage.

I have a busy week coming up. Chemo on Monday, Neulasta on Tuesday, surgery consultation about a further prophylactic mastectomy (2 hours' drive away) on Wednesday, and a thyroid biopsy (also 2 hours away, but in a different direction) on Thursday. My Thyroid lit up the CT scan in February, and an ultrasound shows some nodules that my MO wants biopsied, so back to the hospital I go. My MO thinks that the thyroid nodules are likely just an incidental finding, and are not likely of any great concern, but wants to check them out anyway. More anxious waiting for lab results for me. By the time I get home from the biopsy on Thursday, I expect I'll crash pretty hard, so I probably will not be posting much, if at all. I'll look forward to reading everyone else's adventures, and will be thinking positive, healing thoughts for everyone on the board.

Gentle hugs to all.

Hi, so-she-did. Thanks for the good wishes. I don't mean to sound "whiny"when I post - I do want to raise my hand just to check in and let the world know I'm still around. I don't get out much, most of the time, as my blood counts are falling, even with the Neulasta, so this board is like a social outing. My SEs, so far, have been manageable, if not a lot of fun, and I am regularly humbled by the awareness that many endure suffering much greater than my own.

Let's all kick the daylights out of this terrible, indiscriminate disease, one day, one infusion, one side effect at a time.

Oh, Shaz, thank you so much for your lovely posts. I'm going to transcribe your poem into my health journal, so I can refer to it often.

Just this evening a neighbour was over to the house dropping something off, and we talked about his sister, who is travelling to Australia next week. His family has hosted a number of young Aussies working at their ranch over the years, and we were talking about Oz. My DH spoke again about how a trip to Australia was on his "bucket list", so it's not impossible that someday I'll be in your neighbourhood, though it won't likely be soon. If we ever come, I'll surely try to include Mount Compass in our travels, so that I can thank you in person for your generous spirit.

I treasure positive thoughts, prayers, and good wishes as they come. Last week, a local quilters guild dropped off a lovely lap quilt to use at chemotherapy infusions as part of a program they have started to give comfort to cancer patients, as one of their members was a cancer patient, and would become cold in the chair. A very distant acquaintance heard of my diagnosis, and the next thing you know, I have received a virtual hug from a group of women I don't even know.

PrincessOfMeh, I'm a knitter too! I taught myself how to knit when I was in high school and have been knitting since, mostly sweaters and other tops. I have to admit I haven't touched my knitting since my diagnosis at all. I think it's the depression and tiredness. Eventually I'll get back to it.

I'm having much more nausea after the latest infusion, more than usual. I have a hard time keeping it under control

Cool, BB! I've never knitted sweaters, but I do like shawls, blankets/throws, scarves & hats as well as other accessories. I find it very soothing and not too much of an energy suck on fatigue truck days. Keeps me from moping when I'm not mentally clear enough to write.

AV: Whine all you need to! That's why we are HERE. I am with on you on the diarrhea over constipation thing. I have had constipation all my life and now that i finally had it under control, I was really worried about what would happen under chemo. So far so good. I started a prescription called Linzess last fall when I couldn't take it anymore. If i take 290 mg of that with a dose of miralax a day, I am good. So far.

I love the Greyhound…and all the animals. The pet sheep who thinks she is a dog…too funny.

I don't knit at all, but someone from my office knittedme a foob to wear post surgery, and it's great! I wear it inside a stretchy bra that has an opening for small shaper or modesty panels - like a GenieBra? But not that brand. I found a "knitted knocker" or "tit bit" pattern for her on the Internet, and she whipped it up very quickly. She didn't have any poly fill at home, so I cannibalized an old pillow, and I was ready to go out without being lopsided. It is soft and very comfortable, and I filled it to match the other side. Some patterns suggest using a small weight, like a smooth stone, to keep it from riding up, and I might try that. Maybe some of you who knit would get a kick out of making yourvery own foob.

SC just saw your post. I hope you get moved into a private room right away, and they get a handle on your temp.

Sharon, your poem is now copied into my journal as well, for inspiration!

lynne,

My friend who helped after my surgery came from Florida to Oregon! The weather was very well behaved for her though, we haven't had as much rain as usual this spring.

I had a bmx before chemo. It took me awhile to figure out why the chemo has been so much more terrifying than that major amputation. The bmx surgery was a defined process. I knew what would be happening and what would be missing when I woke up. This chemo is like some bad houseguest that you end up dealing with by lottery. You don't know what you'll get from day to day- diarrhea, or constipation-just be ready for both! And if you think you can keep it together and make it through your work and your days in a halfway normal fashion, don't forget all your hair will be gone so there's that constant reminder for you! And maybe the worst feeling for me, one I try not to dwell on too much, is what is the chemo doing in there, besides making me feel like hell and wrecking my blood counts and skin cells. Is it getting the effing cancer? It is a shitty houseguest but it's here to get rid of an even worse squatter that's trying to set up housekeeping. I hope it's staying busy on that front. I know we all are having vastly different experiences with side effects and adjusted lifestyles but I'll bet we all share the same mix of hope and fear that this treatment we've committed to in these coming months will,for all the pain and tears it brings, leave us with a clean house so we can get back on our bikes and our horses and tell our kids and our dogs to hurry up-it's time for some fun!!

Yes, we're supposed to drive to Florida this afternoon. still waiting for them to draw blood. I'm having port issues again. Things go in, but nothing comes out.

avmom, Shaz, and anyone else having problems with nausea that is not well controlled by oral meds - ask your MO about the 'Sancuso' patch. It worked really well for me. They put it on the day of chemo and I left it on for 7 days. My MO said insurance sometimes doesn't cover it and he would give me a sample. However, by the time I left the office, they already had insurance approval! I guess we'll see how round 3 goes but round 2 was definitely better with the patch.

I had 3 really good days and I guess I pushed myself too much. Last night after a BBQ with some church friends I hit a wall and then emotionally it really took a toll on me with sobbing and being tucked into bed by DH. This morning I'm achy all over and my back and hips are starting to hurt again - I thought I would be out of the woods until round 3 on Thur but I thought wrong

Bekah

hi,

Resurfacing after treatment 1 on Tuesday. TC. Everything in the chair went great. I did not get a port and the nurse seemed nervous but MO had told be to drink lots and lots of water 2 days before to plump up my veins and they put a heating pad in my arm when I got there and it seemed to go well. My parents came in town for the week to provide support which was wonderful but it was hard for me to let go of hostess-mode. Neulasta shot on day 2. Main side effects are irritation/ADHD-ish and constipation. I usually love listening to music and watching TV but now these just annoy me. My MO was very aggressive with the anti nausea meds and I think they just shut everything down. But prune juice and Senekot seem to be helping. Then yesterday hit-by-a-truck-like-fatigue (day 5). Oh and my tongue turned white and felt like I had burned it with hot soup. Some bone pain, uncomfortable but nt excruciating. Used Icy Hot and heating pad and it helped a little. Today I feel fine-ish. I lost my job the same month I was diagnosed And although it was devastating at the time, I am so thankful I am not working now. I am so inspired by those of you who are working and/or have young children--you are incredible warriors as is everyone on this thread!! Love all the pictures!

Oh I forgot to mention the most hilarious side effect. Because I drank so much water trying to plump up my veins, I was 2-seconds away from making a "big splash" at my first appearance in the chemo-lounge. Wow, now that would have left an impression!! Whew. The life lessons I am learning. Haha.