Request for help

From the very first day we started telling people about my diagnosis, we were completely blown away by the love, support, and offers of help from everyone.  I've blogged about it earlier, and I cannot say how many times I thanked people, said we were absolutely fine now, but there might come a time when we'd need help.  Well, here I am, asking for some.

Thursday I met with my friend Kristin who *just* (as in this week) finished her last infusion of Herceptin, after two rounds of chemo (similar to mine).  Her hair is back, and she is so full of life and joy that it was wonderful for me to grab coffee with her and to drink in all her wonderful tips (some of which have been added to this post).  One of the things that she said was most useful was to have friends with her during each chemo treatment.  She said she was well known by the oncology nurses when she'd arrive with friends and they'd ask her if she wanted to be put in the "party room."  This made me smile.  Additionally, she shared that during one infusion, she had a bad reaction and if her friend hadn't been right there to see how serious it was, it could have been much worse.  She also found that sometimes the chemo affected her vision and so she really appreciated having someone else drive her there and back.

SO....

Given that my chemo is scheduled for Wednesdays, which is a day that Greg teaches, I'm in search of some good friends to keep me company on my chemo days.  I realize it's a long day (likely 2 1/2 to 4 hours) and not do-able for everyone.  I also will have a total of 16 chemo infusions (I'm not counting the Herceptin alone, which I should be able to do all on my own), so it's a lot to ask.  This week it's 10:30 to about 2:30 and I plan to schedule it for afternoons in the future (1-4ish?).  The infusions are at Water Tower Medical Commons, across the street from Columbia-St. Mary's Milwaukee.  I promise to bring knitting and books and other things so you don't have to entertain me the entire time!

If I actually get started this week, and no weeks are delayed for any reasons, these are the dates I'm looking at:

3/4 (10:30-2:30)
3/18
4/1 (Cara's spring break--hopefully she'll come along)
4/15 
(not sure if there's a week off here or not)
4/22
4/29
5/6
5/13
5/20
5/27
6/3
6/10
6/17
6/24
7/1
7/8
7/15 (depending on if there's a week off between regimens)

So if you happen to be free and want to be my chauffeur, email me with some dates you think would work (and your cell phone number if I don't have it).  

And, as always, THANK YOU!


p.s. All pieces of the cardigan are knit and I'm currently in the process of knitting the attached collar.  Wow, are there a lot of stitches (257, to be exact)!

Medical appointments--and knitting

I had my one week follow-up with the plastic surgeon and either I misunderstood, he forgot what he'd told me, or the plans changed when my repair surgery became more intensive (think it's the last of these).  So I did NOT get my stitches out and I did not get "embiggened."  :)  BUT I am healing very well and am cleared for starting chemo next week.  So if all goes well when the stitches come out on Tuesday, and my blood counts are high enough on Wednesday, I will start infusions Wednesday around lunchtime.

The other thing is that I'm able to start running again next week.  I can use the elliptical this week if I want (it's NOT my favorite form of exercise), but it takes 6-8 weeks for sufficient integration of my tissue into the AlloDerm following surgery, so to be safe, no running before 8 weeks.  The last time I ran was January 7th, so I'm wondering if I'm going to have to re-do the whole C25K program from the start again.  Of course, given the horribly long stretch of temps not getting above freezing, I may not want to run--at least not outside, even next week.

~~~~~

Finally, it's been awhile since I posted knitting updates.  I've been working on all three projects to a certain extent.  Trav's socks are slow-moving, as they're my totally brainless knit:

I'm really enjoying Hitchhiker.  I waited so long for the plastic surgeon (before my five minute appointment) that I was able to knit three notches worth on it--11 of the 42.  That was also long enough for me to finally memorize the 8 row repeating pattern!  I like the way the yarn (an old Knit Picks sock yarn) is pooling.

And then there's the recovery cardigan.  I'd taken some time off from knitting it, as it's not portable.  But this weekend I had time to knit at home and this pattern has sucked me back in!  Back, both fronts, and about 1 1/3 sleeves are done.

New 'do

For most of my life, I've hated my hair and done an elaborate back-and-forth with short hair and long hair; curly and straight; colored and natural; bangs and no bangs...  The last several years, I've fallen into a very simple, medium, able-to-be-pulled-back-into-a-pony-tail length cut and I swore I would never again do bangs, as it's such a pain in the ass to grow them out afterwards.  But in about a month, I will likely have NO hair (certainly very patchy hair), and so I thought it was one more chance to try bangs with little risk!  Furthermore, I have several friends who went dramatically short relatively recently (most notably Susan and Chris) and I *love* their short hairdos, so I thought I'd try it.

As usual, I don't like it.  BUT it's kind of growing on me, too.  I'm sure I just need to learn to style it (any helpful tips very welcome!), but it throws me every time I look in the mirror!

~~~~~

On Saturday, I finally took off the bandage and looked at my surgical scar.  It's actually not much wider than the original scar.  It's 11 stitches, very straight and neat, and SO MUCH easier to take care of than the open wound.  :)  I see Dr. Sterkin tomorrow afternoon and he had said he might even take the stitches out then.  Fingers crossed for fantastic healing!

I spent some time working on my recovery cardigan this weekend.  I finished the right front and started a sleeve.  I was sure I'd never get it done in time to wear it this year, but with the insanely-long, cold winter (it was -15 this morning at our house), I might actually get to wear it.

And we had a fun (and delicious) night last night--the make-up party for our Super Bowl party that was semi-cancelled due to the blizzard.  We called this the "Soup-er Bowl" and had a soup and bread and dessert potluck.  I think I could eat soup every meal of every day and never tire of it!  We had creamy asparagus soup, chicken with homemade noodle soup, Hungarian mushroom soup, and (the surprise hit) dill pickle soup.  We also had this beautiful traditional Eritrean bread, crackers, pizza, spinach salad, gingersnaps and brownies.  Everything was delicious and it was fun to catch up with people we had missed three weeks back.

Today starts my time at work without my lifeline, Darcie.  Part of the reason I have the LTE position is because she will be on maternity leave and that begins today, after a week of my being trained.  <gulp> 

And now I'm off to OT, which I will miss terribly when it's done.  The major issue continues to be the cording in my right armpit.  Every day I hope that it will just magically release.  Maybe today will be the day...   :)

Surgery #2

Yesterday I had a minor surgery (debridement) to repair the incision on my left breast that had come open post-mastectomy.  I was thrilled that this surgery could be done with only local anesthesia, and was slightly amused to have a surgical nurse call me earlier in the day to tell me that the anesthesiologist wanted to make sure that I knew he was willing to put me into "twilight sleep" so I wouldn't have to remember the surgery.  I assured her that local anesthesia would be just fine.

This surgical experience was very different from the mastectomy, and I found it strangely interesting to be able to hear the surgical team working.  (There was a drape up so I wasn't able to watch.)  I felt pressure and tugging, and could mostly make out what was going on.  I was also able to see the whiteboard that listed all instruments and sponges used during surgery--and listened as all were accounted for afterwards.  :)

I think I've mentioned before that the plastic surgeon used what's called the "Box-To-X" incision for my mastectomy.  The scar left forms an "X" and on my left breast, the very middle of the "X" popped open.  The plan was to clean the edges and stitch it back up so it would heal and I could get on with the rest of my therapy (chemo and radiation).  As seems to happen to me all too frequently, it wasn't quite that simple.  After debriding (cleaning) the small wound, the skin was too tight to close, so the incision needed to be re-opened and extended along one of the "X" bars to get the skin to close, and to avoid puckering.  So two opposite sides of the "X" are now much longer than the other two sides.  Dr. Sterkin was somewhat apologetic about that, but I really don't care that much about the appearance--I'm just hoping that it heals well this time.

Other than being kinda bruised, I really feel amazingly well.  It was worth the strangeness of being awake through surgery to not have to deal with post-anesthesia effects.  

Lucky me, I get to be back on the stinky sulfa drugs (antibiotics) for another week.  AND apparently sulfa drugs + alcohol = nausea, so I guess I won't be going out for a drink this weekend.  <sigh>

~~~~~

One more thing:  Despite the temps being below zero, I did make it out for Night Knitting tonight and got started on Hitchhiker, which "everyone" seems to be knitting.  It's a fun, easy pattern that I'm enjoying so far.

The joy of being busy

This week is the first week in two months where I'd say I'm really, truly *busy*--and it feels great!

*Tutoring Math at Mt. Mary (Tuesday)

*Starting my new (20 hours/week) job at UW-Milwaukee, where I've got an LTE position through June as an Administrative Program Specialist in the Zilber School of Public Health (my alma mater ;))  I am so grateful that Zilber took me back--especially after the other, un-named job cancelled on me.  It's a very busy time of the semester, and the hours I'm there fly by.

*Lots of medical appointments, including two OT sessions, a pre-op appointment, and surgery on Wednesday (to repair the incision opening)

*Parent meeting for the middle school musical (Joseph and the Amazing Technicolor Dreamcoat!) on Tuesday night

*Night knitting on Thursday

*Girl Scout cookie pick-up on Friday (with delivery to begin this weekend)

*Superbowl party make-up date on Sunday


It's all good stuff and I'm excited at the new normalcy.

~~~~~

A few details on the medical stuff, for those who are interested:

My therapy is kinda stalled, it seems.  My left side is (IMO) back to pre-surgery, so I'm just doing some basic strengthening (although I certainly feel strong enough on that side).  Unfortunately, my right side still has significant cording.  Both the OT and I feel that the cords are softening, so maybe it'll eventually heal, but not yet.  My ROM is really good on that side, too and it's only the cording that prevents me from being back to normal.  I've attended my initial 5 appointments, and insurance has approved some additional work due to the cording.  I feel SO much better after leaving an OT appointment, as Audrey does a great job releasing the muscles that get so tight between appointments.

I've been diligently cleaning and wet-packing the incision on the left, and watching for signs of infection (I've not seen any).  Dr. Sterkin was happy with the way the wound looks and he told me how he'll repair it tomorrow (simple trimming of the edges and back wall on top of the chest muscle, then stitching in a horizontal line).  I'll go back in a week to have the stitches out, and should be able to start chemo the week after that!  So if all goes well, I'll start on March 4th.  That's only a 3 week delay.  Fingers crossed!  Unfortunately, I have apparently developed Mondor's disease, which should clear up on it's own.  I just feel like I wouldn't mind not having to experience every possible side-effect!

Things that made me happy today

I was cranky on Monday, learning that chemo was postponed and I'd need to have another surgery to fix my first surgery.  But there's been a lot of good stuff happening lately, too.  Here are just a few from today:


*Finding out that my hemoglobin went from 7.6 mg/dL to 9.2 mg/dL in eight days!

*Sending out an opportunity to all three of my former PH101 classes and hearing back from a few of my very favorite former students who just wanted to fill me in on their lives and ask how I'm doing

*Stumbling on chicken thighs on sale for 59 cents a pound so I could make a big batch of chicken broth from the cookbook The Cancer Fighting Kitchen (as recommended by my friend Amy) to stash in the freezer for later

*Going to daytime knitting where one of my friends brought along her daughter and 7 month old granddaughter.  I got to sit across from baby Wynn and make faces, wave, and "talk" with her!  Fills up my baby-loving tank, which was running a little low.

*Finding a really good KFC copycat coleslaw recipe to make for supper

*Making it through the night without night sweats (first time since surgery)

*Getting my incision repair surgery scheduled for next week Wednesday (the order had gotten lost somehow, so it's a good thing I called; scheduled for 5:30 pm, but better than not at all)

*Looking forward to starting my new job tomorrow!

Back to work

I graduated (PhD in Environmental & Occupational Health from the Zilber School of Public Health at UWM) in December, with a part-time job lined up (the job was offered, I accepted, and I was just waiting for paperwork from HR), and a few leads on additional part-time opportunities to round things out.  And then I got my cancer diagnosis and Greg and I decided that a single, part-time job was a perfect fit with all the treatments I had ahead of me.  I turned down three other part-time opportunities and settled into immersing myself in prep for the one job.  My start date was to be January 5th.  However, when I told them I had surgery on the 8th and wanted to start and put in 20 hours that week before surgery, then make up the following two weeks in the future, they told me to just hold off until after surgery so I could see how my recovery went.  I felt recovered enough from surgery after two weeks, but they told me to wait until my chemo was lined up, and worked with me to choose days and times they needed me so that I could schedule my chemo appointments around them.   And then, when I had scheduled chemo and pushed for a start date, explaining that I was going crazy sitting home and barely using my brain (not to mention that whole lack-of-a-paycheck thing), I received an email stating that there was a hiring freeze and they knew nothing further.

To say I was upset is an understatement.  Without going into much detail, this job was (IMO) a perfect fit for me, combining my passion for breastfeeding (which began almost 20 years ago) with my experiences gained in graduate school for Public Health.  I spent the morning wallowing, and then sprung into action, contacting two of the three jobs I'd previously told "no."  Following the "everything happens for a reason" vein, I got positive responses from both.  One of them is still working out details, so I won't publicly announce it yet, but the other was a return to tutoring at Mt. Mary.  Today was my first day back (I'll be working one 5 hour day a week there), and it FELT SO GOOD!   Even though my schedule was light, it was wonderful to be using my brain and to be around other adults (and while cancer came up, it wasn't the focus of the day).  

~~~~~~~~~

I also think I found the silver lining to the chemo delay.  As I'd posted earlier, my hemoglobin, even a month after surgery, is still a very low 7.6 gm/dL and my medical oncologist is not happy with it.  Today when I talked to her and expressed my concern about delaying chemo so my incision could heal, she said that while delaying chemo isn't ideal, she's happy that we will have time to get my hemoglobin up before starting.  I will get another round of blood tests tomorrow (a week after starting 3 iron tablets a day) and check my iron store levels, and possibly get IV iron if they're not improving quickly enough.  That should help with healing the incision as well as prepping for chemo.  Additionally, if the other job really works out, I'll have a chance to start there and get established before beginning chemo.  
Everything happens for a reason!

One month out and one step backwards

Yesterday was my one month post-surgery anniversary.  What a difference a month makes! I feel like I'm healing very well (more on the professional interpretation of "healing" later), and my energy level is pretty good.  I can (briefly) lie on either side for exercises or snuggling ;) and with the exception of raising my right elbow above my shoulder, my ROM is great.  

So I was very excited to officially leave the first step in my healing journey (the surgery) and move onto the second step (chemo) this week.  I met with Dr. Sterkin today, scheduled to have him remove the steri-strips and do my first real enlargement.  Unfortunately, when he removed the steri-strips, the scar on my left side had popped open in the middle, and had formed a tunnel.  Since the body has a hard time healing during chemo, a person has to be completely healed before starting infusions.  I'm no longer "healed," so no chemo this week.  Furthermore, given my high number of positive lymph nodes, the sooner I can start chemo, the better, so instead of taking the time to let my body heal itself, Dr. Sterkin wants to schedule surgery to clean the edges of the scar and stitch it back together.  To add insult to injury, not only did I not get expanded, he actually TOOK OUT some saline (to aid in the healing).

I'm disappointed, but I do stick by my mantra of everything happening for a reason (even if I don't yet know what the reason is).  Maybe something wonderful will happen in the next couple weeks that wouldn't have been possible (or would have been more difficult) if I were currently doing chemo.  Ooooh....just remembered that I had wanted to get Ethiopian food once more before starting chemo.  This opens that up!

Still, as anniversaries go, this isn't so bad.  Here's to a LOT more cancerversaries (that's what all the cancer sites call them).



~~~~~~~~

And speaking of anniversaries, we went out last night to celebrate my in-laws' 50th wedding anniversary.  I am so very fortunate to have married into such a wonderful, warm, loving, and humorous family.  I especially appreciate my mother-in-law, who is an amazingly good sport about being teased.  She grew up with nine brothers, so really should be given a respite from the teasing, and yet none of us do.  Love you, Mom & Dad--and happy 50th!

Greg & I, all fancy and stuff

More tests and results

I didn't realize till I arrived on Tuesday that the MUGA heart scan could not be done the same day as the bone scan, as the radioisotopes used for both are too similar to one another.  So I had it rescheduled for Thursday, 2/5.  After waiting over an hour, I finally got in, but I had a very important "meeting" (ok it was lunch with my friend John...) so I put off the test till yesterday.

The MUGA scan was interesting.  They remove an aliquot of blood via IV, mix it with the isotope and let it sit about 20 minutes, then put it back in via IV and take pictures of the labelled red blood cells' path through your heart.  This is a way to determine any damage to the heart, and since two of the chemotherapy meds that I'll be on are known to affect the heart (in less than 5% of people, but still high enough to watch), this gives a baseline.  The gamma camera they use is the same one used for the bone scan and the (horribly painful) sentinel node tracing.  Your body slides into the machine and the cameras are lowered to the area where the image needs to be taken.  Sometimes the camera is right over your face (that's the hardest for me to deal with!)  It looks something like this:

I also got the results from my blood and other tests pre-chemo.  I've had low platelets for, quite possibly, all my life.  About 6 years ago, I visited a hematologist, who diagnosed me with ITP (idiopathic/immune thrombocytopenia purpura)--an autoimmune disease.  He explained that when they couldn't find any other reason for the low platelets, this was the diagnosis they used.  Well, my medical oncologist is also a hematologist and she ordered additional tests which I'd not previously had done to try to get to the root of my low platelets.   There has been a connection between Helicobacter pylori (which also causes ulcers) infection and low platelets, and if you treat the H. pylori, the platelets return to normal levels.  So Dr. Shah ordered that test, but it came back negative.  However, she also ordered anti-platelet antibody tests, and 2 of the 6 came back positive.  It's killing me that I don't know exactly what that means.  If any of you know what it means to have a positive eluate but negative plasma, please let me know!  Otherwise, I guess I just wait until Wednesday and my appointment with Dr. Shah.  I was surprised that my platelets are back over 100K (any benefit from the platelet transfusion during surgery is long gone), but still disappointed that my hemoglobin is 7.6 gm/dL (normal is 12-16).  So three iron tablets a day.  Ugh!

My exercises/stretches are helping, I think.  The cording on the right side is still causing the most pain, as well as decreasing my range of motion.  Other than that, the healing seems to be going pretty well.  I'm anxious to see what Dr. Sterkin has to say on Monday when I go in for my next expansion.  Hopefully the last of the steri-strips will come off, too.

~~~~~

I have been enjoying catching up with friends now that I have so much free time.  If I counted correctly, I've done something social (mostly gone out for coffee or lunch) eleven times in the last two weeks!  I'm not sure if I'm making up for lost time, or storing it up for the future.  Either way, it's been great to see all of you in the last month plus--definitely the best part of not having a job.  <sigh>

Today's weather was beautiful--sunny and (finally) above freezing.  It's the first time since surgery that I really wanted to go for a run.  Maybe I can get the go-ahead on Monday...

T2N2aM0!!!!!!!!

Patience has never been one of my virtues, so as soon as I finished my morning therapy and meeting at the Middle School, I called Dr. Shah to ask about the test results.

Both CT and bone scans came back clean--NO SIGNS OF METASTASIS!!!



I am walking on air--despite also finding out that my hemoglobin is still only ~9 and I have to take THREE iron tablets a day.  Still, it looks like I'm all clear for starting chemo in one week.  Thank you all for you thoughts and prayers.  The sooner I start, the sooner I'll finish.

Who needs Xanax when you have friends?

Well, I made it through 4 1/2 hours at the hospital, doing tests.  That included an injection for the bone scan, drinking an awful lot of liquid for the CT scan with contrast, both tests, and some lab stuff. I guess you can't do the MUGA on the same day as the bone scan, as the radioactive materials used in both are similar enough that you don't get clear pictures.  So I have to schedule that for at least 48 hours from today.

And while I took my bottle of Xanax to the hospital with me, I didn't need to use any.  Thank you all for surrounding me with peace, love, and relaxing thoughts.  The only brief panicky feeling I had was when the bone scanner was right near my chest as I think it's the same machine as was used for the sentinel node mapping before my surgery, which was the most painful thing I have ever endured.

One kind of annoying thing about today--I thought I'd get to take my new port-a-cath out for a spin and avoid an IV.  No such luck...  So I still don't know how well it'll work, and I have a big red mark in my elbow crook from the IV.  :(

I am cautiously optimistic about the results.  The bone scan tech was commenting on the arthritis in my knees, and when the radiologist looked at the images, he didn't request any additional pictures, so I think that's good!  Furthermore, the CT scan tech was Greg's childhood babysitter, so that has to count for something in the luck department.

~~~~~

Since November 25th, I have had 18 medical appointments related to my diagnosis.  I dare say that when this whole thing is done in about a year, I may have more days with an appointment than without.  Once again, it's important to trust (and I'd say to like) your treatment team as you spend an awful lot of time with them.  I scored well in that department.

More therapy & good thoughts request

I had my second therapy appointment today and I liked this one much better!  Last week Audrey showed me all sorts of exercises and took measurements to see how I'm starting.  Today she took a few measurements (my "good" arm improved 14 degrees and my "bad" arm improved 30), but most of the day involved massage!  The first thing she did was lymphatic massage, following the flow of this diagram, on my back and arms:

Lymphatic massage is a relatively new addition to PT and OT.  I remember when they taught it to my mom following her second (but not her first) knee replacement.  Audrey said she did a training about two years ago.  It's very gentle--so gentle that it's hard to believe it works!  :)

She then worked a lot on my right arm and the cording there.  She was able to release a lot of the muscles, but that cording is just not really budging.  Guess I'll have to keep going back!  She also taught me scar massage--to release and prevent any adhesions.  She said my scars are very loose, so that's good, too.

I was excited that after the first rounds of massage, I was able to roll completely to my left side and she did some additional massage on my right shoulder.  

I know I should be happy with my progress--the left side is almost back to normal, and the measurements on the right are going well--but I want it all better right now!  :)   I also asked about resuming running, but I have to get permission from the plastic surgeon for that (next week I will ask).

~~~~~

I spent much of the morning imitating a cat: sitting in the sun and playing with yarn.  Between the Super Bowl (what a disappointment--most of our guests could not get in for our party--whether coming from Waukesha or even the near East side; only one die-hard couple braved the elements, and we're so glad they did!) and this morning, I knit the left front of the recovery cardigan:

~~~~~

And now the request for good thoughts...

Tomorrow I have three tests--the MUGA heart scan and then the bone scan and CT scan to test for metastasis.  This is the last bit of unknowns in terms of my diagnosis (the "M" in the cancer staging), and I'm trying not to freak out about it.  All the doctors have said it's highly unlikely to have metastasized, but they were also all surprised to find the cancer in my lymph nodes, so I'm not finding their comments as comforting as I should.  It's too late to ask for white light and positive energy to prevent mets, but I can ask for it to send me calming vibes through the tests, and then the worst part for me--the waiting for results afterwards.  Thanks in advance :)

Helpful tips from friends, readings, and personal experience

I thought it would be nice to have one post with all the helpful tips I've picked up along the way.  I'll keep editing it and maybe (if I can figure out how) keep it pinned to the top of the blog.  In compiling the initial info, I went back and read all the comments on all the Facebook posts since I made my diagnosis public.  Wow!  The tears came back...  I have not a doubt in my mind that my recovery has gone so well because of all the people who have my back--worldwide!  I'm glad I decided to go public, as the love, support, and helpful tips :) have definitely helped.

(if any of you have additional suggestions, or ones I missed the first time through, please let me know and I'll add them)

So here they are, roughly categorized:

General:

For night sweats, instead of cotton, wear lycra (less cold); keep spritz bottle of water, alcohol and lavender essential oil to cool self and sheets; refined sugar increases night sweats; try lysine supplements

For nausea: ginger tea, mints/mint gum; eat small meals throughout day; eat before you get hungry--even just a bite here and there; if you wake up nauseous, eat dry food before getting out of bed (try ginger snaps!) and try to eat a high-protein snack before bed; rest; get some fresh air; avoid strong odors; drink fluids between meals, not with meals; 

For fatigue: pace yourself; rest when you start to feel tired or notice signs of fatigue; delegate, delegate, delegate!  do what you can to manage stress, as it contributes to fatigue; exercise, even if just taking a walk

Yoga is a great way to recover and exercise post-surgery; many hospitals have programs specific to cancer patients/survivors

Pre-surgery:

Measure your arm circumference to have as a baseline for lymphedema afterwards

Cook some of your favorite meals to have in the freezer

Buy your favorite beverages so it's easier to hydrate when you get home

Get shirts that button/snap/zip up the front (can't raise arms after surgery)

Get soft, front-close sports bras (I actually couldn't find any, but they would have been nice) OR loose camisoles with built-in shelf bras; the compression bra they give you in the hospital is horribly uncomfortable

Have lots of pillows of different sizes and shapes to help get comfortable after surgery

Post-surgery:

Lots of ideas for what to do with the drains, and people like different things:  camisole with pockets to hold drains; Hoodie with pockets for drains; fanny pack for drains; wear an old men's tie and pin them to that; (I had so many drains that I couldn't fit them in pockets and had to pin them to my camisole but it was more comfortable when I pinned them higher, looping the tubing through the BIG safety pins

Do post-surgery stretching exercises in shower, with warm water loosening things up.

Use forced touching/pressure to deal with hypersensitivity post-surgery

Bellaruth Naprastak has some nice post surgery recovery guided imagery audios

Much easier to sleep/get comfy in a recliner the first week or so

Stay on top of constipation prevention (easier to prevent than fix):  Stool softener, milk of magnesia, Miralax (try in warm cider)

Percocet can cause itchiness; use benadryl to counteract it

Find a way to spend some time reclined with the lymph-node impacted arm above your head each day to prevent swelling/pooling of lymph

Pre-chemo:

Purchase an eyebrow pencil while you still have eyebrows so you can match the color, because they will thin as they fall out

Sucking on ice chips or popsicles during chemo can help with nausea and mouth sores; if no mouth sores, suck on sour candies;

Use aquaphor lotion throughout

Things to bring:  Cozy blanket, Bottle of water, Snacks, Tissues, Mints for when they flush the port, Gum, Magazine, book, journal, ipad for watching Netflix, movies, music, etc., Earphones, Socks

Wear something comfy and easy for them the access the port

Chemo is constipating.  Prevent it: stool softeners starting 2 days before; bran muffins; drink lots of water

Post-chemo:

If unable to eat solid food, drink Ensure

Ask if you can have IV fluids given ~2 days after chemo (even along with the Neulasta shot)

Watch youtube videos to learn how to tie/wear scarves

If you get mouth sores, the pharmacy can make a "Magic Mouthwash" to help

No matter how tired you are, some exercise will give you energy

Several people have said that Claritin helps with the bone pain after Neulasta shots

Pre-radiation:

Purchase (or find someone who makes) lotion that is gentle, alcohol- and scent-free

Post-radiation:

Aquaphor lotion and aquaphor lip therapy work well