Chemo Start Date Change

My oncology nurse Cathy called today to say that one of the drugs I need for chemotherapy won't be here by Friday.  So...I won't start chemo until Friday, August 10th.  I think that's a good thing, since I've spent the last two days tearing apart these rooms I live in and rearranging for the umpteenth time, and stuff is still everywhere.  I guess I do that--move furniture and stuff around--whenever I'm facing something uncertain, when there are stressors in my life.  I guess cancer and chemo caused that kind of reaction this week in spades!

I went to see Tammy at Cut Loose this afternoon and she shaved my head.  One photo below with glasses and one without.

I really do like the look!  It's also going to be really easy to care for!  I expect what I have left will all fall out within the next three weeks.  I just didn't want big gobs of hair everywhere.

I saw my naturopathic doctor/Chinese herbalist/acupuncturist yesterday.  We've made a great plan for preparing for chemo and combatting the side effects of treatment.  We're also working on smoothing out my scar and minimizing the amount of scar tissue.  Looks like acupuncture every two weeks during treatment.  Buying a blender later today for making protein smoothies.

Have a schedule worked out with the Lymphedema Center starting next week, three days a week for three weeks to start.

I'm going to make a bunch of charts later to post on the doors in my living space.  It's going to be a full-time job just to do the exercises and other self-care as well as taking the meds three or four times every day--sort of reminds me of the job charts used in elementary school classrooms.  Let's see how many gold stars I can collect each week!

Have to print out new calendars for my chemo notebook today, too.  I find it's easier to keep everything in a ring binder--all of my appointments and a code for how I'm feeling each day recorded on the calendar page for each month.  That's lots of good info to share with my oncologist on treatment days and with the rest of my medical/support team.

Guess that's it for today.

Anne

Any Port in a Storm #2

Today I get my second mediport implanted.  Last time I kept my port afterwards.  If I keep this one, too, I can make a pair of titanium earrings!  I always thought that I'd put gemstones in the little indentations with a larger stone in the center.

Connie will drive me to Portland and back today since they have to put me out for the procedure and no body trusts that I'll be able to drive after anesthesia.  The whole process takes about three hours--the first hour is pre-op prep and getting the IV inserted, the second hour is the actual surgery, and the third hour is recovery room time.  I've asked to not have the "happy juice" prior to the anesthesia since I don't seem to come out of that stuff well.

Having the mediport will actually be terrific--my medical team will be able to draw blood easily (I'm a really hard stick) and all of my chemo drugs will be administered through it.  This will be so much better than trying to find a vein in my arm or in my hand each week.

I'm hoping tomorrow to go to the Quilt Show at the Augusta Civic Center and then to the play at Heartwood Theatre in Damariscotta, though I may wait to see that at the matinee on Sunday.  I helped with the props for that show (The House of Bernarda Alba) so I'm excited to see it.

I have to get some laundry done soon, but the weather isn't cooperating for drying outdoors.  Will probably do drop-off service at my favorite laundromat with Kitty on Monday.

Went to the Lymphedema Center yesterday for my intake assessment and will be going there three times a week for the next three weeks to start--lots of work needs to be done to get my lymphatic system working well and to improve my range of motion in my right arm.  I have a bunch of exercises to do at home in addition to the physical therapy I will get there.

That's it for today!  My new normal is quite the challenge!

Spa Day #1 scheduled for Friday, August 3rd

Lots of decisions were made today.
I decided to go with the series of 6 chemotherapy treatments on every third Friday, starting next Friday August 3rd.  That means that those treatments will end before Thanksgiving.  Then I have doses of Herceptin every third Friday for a year.  Between now and then I have to have a medi-port inserted (requires anethesia and a designated driver afterwards) and I also need an echo-cardiogram so we have base-line heart data to begin with.  I will also start treatments at the Lymphedema Center in Portland and will schedule a visit to see my surgeon sometime next week for more drainage.  At this point I'm waiting for everything to be coordinated and finalized so maybe I won't need to drive to Portland every day.  Friday and most of next week are going to be busy busy busy so I think my summer is tomorrow and the weekend.  Have a lot to cram into those three days!


Remember these gals?

They'll be showing up on the blog on treatment days (Spa Days).  One benefit this time around is that massage therapy is available during my treatment time on Fridays.  That's really a treat and by going on Fridays I'll also have my same nurse again, Cathy.  I should be able to start early enough in the morning that I can be on my way home before the afternoon traffic starts to get heavy in the Portland area. And I'll get lunch provided as well.  Trying to find the bright side in all of this!

Monday Monday

Up early this morning and walked for about 45 minutes.  I've been trying to do that at least every other day if not every day.  Early morning seems the best--cooler, not many bugs out.  I usually walk up the road to the church and then walk the paths in the cemetery.

Off to Wiscasset this morning to see my regular doctor/PA just to check in.

Finished the quilt top yesterday.  Will take it to the quilting group later today for help in pinning the layers together.  Will need to iron the backing fabric first.  And maybe cut that into two pieces and resew it to have a wide enough piece for the backing.

GOOD NEWS FRIDAY!!!

I've been just a bit stressed out these last few days, waiting for the MRI of my liver and then waiting for the results.

Phone call from my oncologist this morning:  The MRI on my liver yesterday came back with normal results.  HOORAY!!!

Next step is planning the chemotherapy treatment, but no more surgery and no more cancer showing up on any of my tests--bone scan, CT-scan, MRI.  Now I can relax a bit!

MRI

First of all, they tell you that you can bring your own music.  Not so for this scan as the tech has to keep asking me questions and telling me to hold my breath and then breathe.

I told the nurse that I was a hard stick when she went to insert the IV.  After blowing out one vein in my arm, she finally just went after one in my hand which I had suggested to her before she started.

They tell you your head will be outside.  Uh-uh.  Totally in the tube.  Feet first.  Head inside.

It's colder than a barn in there.  Even with a blanket, my feet were freezing.

I got coughing from lying flat between scans and had to be brought out of the machine at one point but I went back in, brave soul that I am, and we were then able to finish the tests.  

It's really noisy in the room all the time, sounds like loudly chirping birds.  And the noises inside the machine during scans are really loud buzzings and knockings.

Kept my eyes closed the whole time and kept imaging a large vaulted ceiling above me or I might not have been able to do this.  The only other MRI I'd ever had was in an open machine so this isn't exactly what I had pictured.  This is really more like what my machine looked like:

Expect that I will have results sometime Monday--scans need to be read my a radiologist and report posted to my oncologist.  So it's hurry up and wait.

Another Busy Day

Staples removed, 8:15 AM
Cathy, RN, did not really use a tool that looks like this one, thank goodness.
She was very gentle and out they came.

More fluid drained,
More collecting and forming a quite unattractive "muffin top" above my waist--will need the folks at the Lymphedema Clinic to help me get rid of that.

Spent several hours today trying on compression garments for my midsection--under armour, Spanx, and half a dozen other brands.  Ended up with two Nike fitted tank tops.  Close fitting garments really do make me feel better.  Will see what else I can find in the next few days that will also help me to look better.  Still getting used to this new pear-shaped me.


MRI tomorrow and then we (my oncologist and I) can begin to formulate a treatment plan.
Donna is driving me to Portland and back, so we'll go out to lunch before coming home.  I should be pretty hungry by then as I can't have anything to eat or drink after midnight tonight unless I want to eat something at 3 AM.  Think I'd rather sleep through the night.

I promise to post again on Thursday evening for those of you asking for info, not that I'll have test results tomorrow.  But I will let you know how my day goes.

Tuesday Update

I spent some time at my sewing machine yesterday working on a disappearing nine patch quilt for Andrew.  I'm using fabrics that are bright green and blue prints.  I actually had all of the #2 Nine Patch squares done and recut--you cut them in the middle in both directions to make four smaller pieces.  I reassembled them yesterday afternoon.  I took them to my quilting class in Monmouth at 5 and ironed them all.  There are 17 finished squares.  I arranged them into a four by four pattern but I'm rethinking that and may see what three by five looks like before I start sewing the rows together.  I have a nice border and an interesting watercolor-look fabric for the binding.  I want to get the top assembled before next Monday so I can get some help pinning the layers together--top, batting, and backing fabric.  I'll have either one or two squares left over that I can use on a pillow to match.

Today will probably be another sewing day.  I think it's going to be too hot to do too much else.

This afternoon I have a retirement party to attend for awhile and then the follow-up meeting for the Greater Augusta Relay for Life at 6 in Augusta.

Tomorrow I'm off to Portland bright and early to have more fluid drained and my staples removed.  I also have to have blood work done in the lab there prior to the MRI that is scheduled for Thursday morning.

Hoping for cooler weather...or at least a cooling breeze off the pond.

Laundry and Errands Day Today

Dad actually has the washing machine running and the water is NOT brown so we're doing lots of laundry here today.  We (read DAD) hung up three new clotheslines this morning and have one load of wash hung out already.  The wasps aren't too happy with me that Dad moved their home--they'd taken over a beehive shaped birdhouse.  Once the next load is hung out on my porch, I'm headed to Winthrop to do errands.  Donna's going to meet me at the hardware store and then do the lifting-pushing-loading up the car etc. at the grocery store for me.

Feeling good today and trying not to use my arms too much so I won't get too much fluid buildup.  I did have to go to Portland yesterday to have some of it drained off.  Nurse Cathy has encouraged me to take it easy this weekend.  I think I can manage that!

DoctorVisits Tuesday

I saw my oncologist first this morning and we went over all of the test results:

• bone scan:  arthritis--degenerative joints in both knees, ankles, shoulders; collarbone; spine
• CT-Scan:  everything looked good excepts for two tiny spots on my liver so will schedule an MRI to determine what those spots are that are too small to biopsy; MRI will be next week sometime.
• surgical pathology report:  lots of pre-cancerous stuff in left breast.  Three tumors in my right.  Same cancer I had before.  I am a "conundrum"--this should not have happened with everything I did for treatment the last time.
• next steps:  MRI; he'll call all his head-of-oncology specialists throughout the country for suggestions.  There is no data-driven approach to my situation.  Most likely I'm looking at a minimum of 4 chemotherapy treatments with different drugs than I took before and some other long-term drug therapy.  Will know more when I meet him again on the 25th.

Then I saw my breast surgeon and the nurse:

• removed half of the staples that close my incision; put a few steri-strips on a couple of places
• removed the drains, even though they hadn't reached the level she wanted--too much redness around the drain sites
• will need to monitor the drain sites as I will probably fill up with fluid that will need to be aspirated
• will definitely have the rest of the staples removed before the MRI
• imagine I will see them again later this week or the first of next week
• will also reconnect with the lymphedema center once more of the swelling has gone down to reassess my arms and work on exercises to stretch out under my arms in particular

After my appointments, Andrew and Jamie and I went out to Fort Williams Park and Portland Head Light.  I made some phone calls and worked in my journal at a picnic table in the shade while they walked the shoreline and took pictures.  Then we went out to Two Lights and had lunch at the Lobster Shack.  What a perfect day there!  Finished off our time together with ice cream at Red's before going to the airport.  They flew out at 5:30 to LA with a change and brief stop in Cleveland.  They expect to be in LA at 11PM their time, 2 AM ours.  And Andrew has to work tomorrow but not until after 10 so he'll get some sleep. It was great to have a much time with them as I did.

A MAM-mento

Would you ever guess that I made this pin from my bras?!!!

A friend called this my MAM-mento.

The weekend that I got my diagnosis and knew my cancer was back and that I was facing a double mastectomy, I cut almost all of my bras in half. (I kept two to wear up until the surgery.)  Because the cancer was in my right breast both times, I cut the lacy fabric from each right cup.  I ironed it onto pieces of HeatNBond and then ran those through my Cuttlebug with the Tim Holtz Tattered Florals die.  Once those were cut out, I ironed them to pieces of black and white tiny floral fabric.  I cut around the edges of each flower and began stacking them up, larger to smaller.  I used the sheep button in the center to sew all of the layers together with a heavy needle and doubled thread.  I then took two pieces of bra strap that had a nice lacy edge, gathered those, and sewed them to the bottom flowers for a ruffled edge on the brooch.  On the back of this I added one more large flower to cover up my stitching.  

I wore this pin to all of my appointments up to and including my surgery.  And I will continue to pin it onto jackets and vests whenever I have a medical visit scheduled.

Saturday Update: Thank Goodness for Home Health Care

I have two great nurses from Androscoggin Home Health Care.  Trisha has been here twice to re-do the bandages, once on Thursday and again yesterday.  Irene came yesterday noon and supervised my first shower.  Hot water felt fantastic!  I washed my hair and scrubbed off the rest of the betadine.  I'm doing my stretching and other exercises every day.  Sleeping well at night in spite of the fact that I have to sleep on my back almost sitting up though I'd rather be curled up on my side.  Olive

 my cat is being very attentive and careful; she somehow knows she can't climb up the front of me to snuggle this week.   Irene will be back on Monday so I can shower once more with supervision and then I'll be on my own. Trisha will check my "wounds" and I'm hoping the bandages can stay off at that point.  I've already picked out clothes to wear to dinner and the Schooner Fare concert on Monday that will disguise the drains so it shouldn't be obvious to anyone but me.

My sister Barb is here this morning.  She brought the groceries on our list and washed Mom's hair.  She brought me a colander full of fresh fruit.  And there's another gift I can't wait to show my stamping group!

Having a fairly quiet day today--it's kind of hot and muggy so I'm doing things slowly.  Think I might sew quilt squares this afternoon by the open window to catch some of the breeze off the pond.

Guess that's it for now!

Home Again Update

Here's a copy of an e-mail I sent out this morning:

Just a quick note to you with an update.

About two weeks ago I was diagnosed with breast cancer again, a new tumor of the same kind I had before, in the same breast.  I opted for a double mastectomy to get rid of the cancer.

On Tuesday morning, Andrew (my son) and Jamie (his girlfriend) drove me to Portland to Mercy Hospital Fore River for my surgery.  They came in on Sunday evening from CA and we had all day Monday to visit and do some fun stuff.  They were able to stay with me in the prep area right up until the time they wheeled me down the hall to the OR.

 So they got to meet my surgeon and the anesthesiologist and the nurses who were caring for me and got the same information I did about the procedures in a double mastectomy.  I chose not to have the "happy juice" before surgery--I was quite relaxed and not at all fearful or anxious, my blood pressure was normal etc.  So I was awake as they wheeled me down the corridor and into the OR.  What we all appreciated so much was the calmness throughout the whole experience and everyone's positive words and approach.  I wasn't in the OR before too long when I went right to sleep as the nurse was reading the first of my affirmations. This was around 12:45.  The next thing I knew it was after 3 and I was in the Recovery area.  Shortly after I was moved to a private room on the third floor.  This evidently was part of the Mercy Hospital Birthplace--three new babies way down the hall that I never heard as well as one very pregnant woman.  One other woman had also had a mastectomy and she and I shared a nurse for the time we were there.  I'll post pictures on the blog.

view of the Fore River from my bed

would have loved a soak in this tub

best rocking chair ever, flat screen TV, sofa/bed for company

adjustable hospital bed by the window

corner sink in entryway to room

bathroom with roll-in shower

photograph of flowery path in my room

When I ordered my dinner, the person on the other end answered "Room service.  May I take your order?" I referred several times to my room as if I were staying in a first class hotel--flat screen TV, airconditioning, giant tub and shower I was not allowed to use unfortunately, and a lovely view of the Fore River out my overly large windows.  I decided not to use any narcotics after so requested that an order be put in for tylenol and that and Ibuprofen are all that I have taken.  My doctor filled out the discharge papers on Tuesday so I was free to leave the hospital on Wednesday the 4th after breakfast (room service again) and my discharge teaching procedures and rebandaging with the morning nurse.  Andrew and Jamie picked me up at 10.  We went up to the 4th floor to see some art quilts one of the nurses had told me about before leaving the hospital--a very kind nurse took me all over the 4th floor in a wheelchair looking for these quilts.  A couple of quick stops to pick up sandwiches for lunch and fruit at the grocery store and I was home by noon.

Andrew and Jamie stayed for lunch, went for a walk in the woods and over to the log cabin, we took a bunch of photos


and they left around 2:3o to go north to visit his father at Chemo Pond for a few days.  I had Andrew take my car so I wouldn't be tempted to drive, though my doctor says I should be able to drive easily by Monday.

I expect Andrew and Jamie to come back on Sunday night or Monday morning.  We have tickets to Schooner Fare at the Brunswick Summer Theatre for Monday evening and I'm looking forward to that.  Tuesday morning they'll go with me to my post-op visits with my surgeon and then with my oncologist so Andrew will know what if any follow-up treatments are planned.  Then we'll go out to the Lobster Shack at Two Lights and get ice cream at Red's before they have to fly out at 5:30.  I should be fine to drive myself home.  I'm hoping to have the drains removed that day so I'll have even more mobility.

I expect that I'll have a 6-8 week recovery time, mostly to get the use of my arms back and slowly build up lifting ability.  Right now I'm not to lift anything that weighs more than one pound.

I'm feeling great.  I slept really well last night.  My appetite is good.  And the cancer is gone!

Thanks to all of you for your positive thoughts, for reading my affirmations on the blog at http://notesfromthewoodshed.blogspot.com and for everything else you do for me.  I love you!

Anne

I'm home!

I'm home.
I'm feeling fine, just taking tylenol for pain.
I do need a nap shortly.
I'll write more later tonight or tomorrow.
Thank you for all your good thoughts sent my way!

words for surgery

Below are the words I have asked to be read to me during my surgery tomorrow.  I am to be at the hospital (Mercy Fore River, Portland) at 11 AM for a procedure that begins at 12:15.  The surgery should last about 2 hours.  I'll then go to recovery and eventually to a room for an overnight.  I should be sent home on Wednesday, July 4th and the cancer will have been removed.  Hooray!

If you feel so inclined, you might also read the statements aloud to me between 12:15 and 2:30.  Thanks!

I believe that the words spoken to me while I am unconscious have a powerful impact on my healing.  I believe in the benefits of positive statements spoken during surgery.  Thank you for reading the following statements during today's procedure.

Before surgery, please read this aloud to me 5 times:

Your operation will go very well.  Following this operation, you will feel comfortable and you will heal very well.

As surgery is about to begin, please read this aloud to me 5 times:

You will feel safe with this wonderful medical staff to take care of you.  Your body will relax which will help the operation go smoothly.

During surgery, please read this aloud to me 5 times:

Your operation is going very well.

Please feel free to talk to me and offer other words of encouragement and support.

After surgery, please read this aloud to me 5 times:

Your operation has gone very well.  You will wake up hungry and thirsty and you will be able to urinate easily.

You will be able to take slow, deep breaths that will help your body start the healing process.

Your body will comfortably adjust to the changes and heal nicely.  The drains will work efficiently and effectively.

You will feel your strength returning as you do the daily exercises, and your body will heal smoothly because of this.

You will have a healthy appetite every day and sleep well at night.