Aloha!

Tomorrow we set off on our Hawaiian adventure...  the trip we have been planning since I was first diagnosed... our light at the end of the tunnel for the last 9 months.   I can't believe the trip is finally here.

One year ago today was the start of my "retirement" as it was my last day at PwC.   This year definitely did not go as planned.  I think it is a really good sign that I start my second year of retirement in one of the most beautiful places on earth with three of my favorite people.   The travel will be LONG but it will be so worth it.   ALOHA!!!

Radiation done... onto the next chapter

On Tuesday, I had my last radiation treatment.   My new friend Robyn (who I met in the waiting room at radiation) brought me balloons and the radiation techs showered me with confetti and presented me with a certificate as I left the radiation room.   I am VERY happy not to have to drive over to Dana-Farber every day at 10:30am to be zapped.   I think I got off relatively "easily" with the radiation.  The burns were not at all painful/itchy and thus far, my implant seems to be ok and not too affected.  (I am not sure if I continue to be at risk for implant issues. I need to check on that when I go back in a month.)

So, I am "done" with treatment but I don't at all feel like the cancer is behind me.   With the first diagnosis, I WAS able to move on from the surgery and not think much about cancer.   Rarely, did I jump to a crazy conclusion that a headache was a brain tumor.  Rarely, did I lay wake in the middle of the night, thinking about the cancer coming back and spreading (and therefore, my own morality).  That will not be the case this time.  It will take MONTHS for me to feel back to normal (if that ever completely happens).  I am still tired, my fingernails are a disaster, I am stiff and achy, I've got stomach issues, etc.   I guess I write all this to remind everyone that cancer never ends for people like me.   I will never be the same person I was before the recurrence.  Cancer will always be there for me, looming over my head.  (Yes, it will get a little easier with time.)   And while the treatment was horrible at times, we were actively fighting the cancer cells that might have still been floating around.   Now, I just have to sit back and hope that worked.     I will start my hormone treatment (Femara - a pill) this month, but I am struggling with trusting that since the last pill (Tamoxifen) let me down.   Basically, I need to follow my cancer mantra - OSAAT, One Step at a Time.   I need to embrace today and enjoy life because you never know what tomorrow will bring.

I'm not sure how much I'll continue to update the blog at this point.  All I'd be doing is venting about the "gifts" that cancer and chemo keep giving me.  ;)     Thanks for all the love and support over the last 7 months.   We could not have made it through the "other" side of treatment without it.  I consider myself extremely lucky to have an amazing husband, kids, family and friends! 

Halfway done with radiation!

Today, I crossed over the halfway point in radiation.   There was some question about whether I would have 28 or 33 treatments, and my radiation oncologist has decided (in consultation with other doctors at Dana-Farber) that I will have 33.  The last 5 are referred to as a "boost" and will be focused at the 2 sites where the cancer was.   This could definitely affect my implants but long term survival is what we are looking for here...  I'll deal with the cosmetic effects.

Radiation has been going fine.  I have not had any noticeable skin reactions yet.  The nurse said the area looks slightly red but it is hard to tell.  I expect the redness, itching and peeling will start soon.  I am also feeling more tired, so I am back to napping for a little while each afternoon.  I think I was on a bit of a "high" when chemo ended and now I have crashed again.   I was complaining to my chemo  nurse a bit about it and she reminded me that if you have treatment for 5 months, it takes 10 months to get back to normal.  I think I sighed when she said that and she commented that she knew it was not what I wanted to hear, but it is the reality so I have to allow myself time.

I ended up not having a blood transfusion last week as my medical oncologist and chemo nurse decided it would not really make a difference with my shortness of breath issues.  I just need to give it time.

I went to the hospital yoga class last weekend and will go again tomorrow.   I liked it but was definitely the youngest person there. I am also trying meditation although I had trouble making time for it this week.   I'll keep trying!

I also went to the hospital breast cancer support group this week.   The younger woman I met back in January (Jenna) came as well as another young woman (Robyn) that I met at radiation one day.   The three of us are going to meet for lunch next week, basically forming our own group since the hospital group is mainly older women.    Funny thing about when I met Robyn....  Her Mom had come with her to radiation that day.  She had been saying to her Mom that there was no one at the Cancer Center that looked like her.  (I have had the same observation.)  Anyway, her Mom saw me when Robyn was in radiation and made Robyn hang out in the waiting room to wait for me to come back because "I looked like her."  So basically, Robyn's Mom set us up!  ;)   Robyn and I went for coffee the next week and I really like her.  We sat at Starbucks for almost 2 hours!   So glad to have found both of these women who get exactly what I am going through right now.   (I have lots of other supportive people in my life who have gone through this in the past.  It is also nice to know people going through it at the same time!)

The hair on my head is slowly starting to grow back.   No other hair elsewhere.  I really just want hair on my head and eyelashes!

Craig broke 2 bones in his hand while sledding down Okemo (a ski mountain) a couple of weeks ago.  Luckily, he does not need surgery.  He'll be in a splint for the next few weeks. 

I think the Lupron shot I had last week (to shut down my ovaries) is giving me MAJOR sour stomach and heartburn.   I am pretty uncomfortable at times. I have started taking Zantac again (which I was taking during the second chemo drug) and if that does not help more by Monday, I'll call the Cancer Center to get a stronger prescription.  It must be affecting my eating because I was down 2+ lbs this morning when I got weighed before my appointment with the radiation oncologist.  I am also popping Tums like candy.  The joys of cancer treatment...

On Sunday, we are hosting 20 people for Easter.  I am excited to have a "normal" holiday after feeling so crappy for Thanksgiving and Christmas.  Happy Easter to all!!

Chemo Recovery

I feel like I am slowly recovering from what chemo has done to my body.  I am able to get through the day without napping and can get all my stuff around the house/errands done without issue but I am still more tired than normal and have the shortness of breath (which seemed to have gotten better but it now back).

I had a follow up appointment with my medical oncologist yesterday and they took blood to check all my counts.  The hemoglobin continues to be low, which is why I am short of breath.  Usually, this is caused by low iron, but it turns out my iron is totally fine, great in fact.  The doctor was a bit surprised given my vegan diet.  (Go spinach and beans!!!)    So, the low hemoglobin (and white blood cells) is just due to the chemo ravaging my bone marrow.  The 2 courses of action are (1) wait and let the counts come back over the next few months or (2) get a blood transfusion to kick start the recovery.   On Thursday, I'll have a blood transfusion.  I just don't want to wait months to feel better.  I had to run down the street because the dog was getting into someone in the neighbors yard and I thought I was going to have a heart attack!  Hopefully this helps.

On Thursday, I will also get my first Lupron shot. Lupron is what will shut down my ovaries. I will get the shot on a monthly basis.  Many women get it quarterly but my doctor when back to the studies looking at its effectiveness and in the study, the shots were given monthly.  She wants to follow the study for me.  I need to have these shots for the next 5 years (at least) so this might push me to having my 1 functioning ovary removed. We'll see. I'm not rushing into that decision.  I will then start the Letrozole (known as Femara) pill in May.  This is what will prevent the cancer from coming back by preventing the production of estrogen in my body from sources other than the ovaries. (It can't handle estrogen produced by the ovaries which is why we need to shut those down.)   The side effects between both are sweating, headaches, fatigue, hot flashes and joint pain.  Sounds fun, right?

Radiation is going fine. No side effects yet but the doctor expects the skin reaction (sunburn) to kick in soon.  There is also fatigue but I am already tired from chemo so I don't think it will get much worse.

I am trying to get myself back into an exercise routine.  I never was particularly flexible but I guess the PiYo (Pilates/yoga) I did last year had an effect because I definitely can't do as much now as I could then.  I am going to a Yoga class at the hospital today that is specifically for breast patients.  I am excited to get back into a routine!

Radiation

About 2 weeks ago, Mom and I went to meet with Dr. Lingos, my radiation oncologist to discuss and plan for my radiation treatments.  I had met with her last October and got "mapped" for radiation, as we thought I would not be having chemo.   The mapping involved giving me 4 small blue tattoos, which helps them get you lined up to deliver the radiation.  Luckily, they were able to re-use those tattoos. 

The biggest item for discussion with Dr. Lingos was whether or not we also radiate the lymph nodes (in addition to the breast).   We had planned to do this when chemo wasn't happening to be as aggressive as possible, but since I ended up having chemo, I was hoping to avoid.   Radiating the nodes puts me at higher risk for an incredibly uncomfortable condition called lymphedema.   We discussed and Dr. Lingos believes we definitely should radiate them since my case has not followed the norm and we should continue to be aggressive.  So, we are radiating the nodes...

Other than lymphedema, my big fear with radiation is that the right implant gets messed up and I need surgery (or surgeries) in the future to fix it.   Radiation will tighten the skin in that area, which can cause the implant to become mishapen/harden.   As of now, I have one of the best reconstructions most of my doctors have ever seen (they have ALL commented on it... Thank you Dr. Glatt).   There is not much I can really do to prevent an issue, so I am trying not to worry about it.    Dr. Lingos did recommend massaging the implant and moving it around, so I'll try and remember do that daily.   Whatever happens, happens at this point.

Yesterday, I went to the Cancer Center for my "dry run."  Basically, they showed me around and got me into the radiation machine and positioned me to take some pictures.   Luckily, the treatment only takes about 10 minutes because it is not the most comfortable position to be in - lying on my back with my hands above my head.  I feel like my right hand immediately falls asleep when I get it into position!  The first treatment was today and was easy.  Not sure how long before my skins starts to react (it will get red/sunburned and blister).  The other side effect will be fatigue, but I am already tired from the chemo.   One down, 27 to 32 to go.  (Dr. Lingos hasn't decided if I'll have 28 or 33 treatments in total.)

As for other chemo side effects, I still have the neuropathy in my fingers and toes.  It is annoying but not too terribly uncomfortable.  Just imagine feeling like your extremities are falling asleep all the time.  I am hoping the sensation will dull with time and does not become permanent!

Hair

My hair should be starting to grow back, now that chemo is over.  The whole hair loss process has been interesting so a few observations...

• Despite losing hair on most parts of my body, I still have a significant amount of arm hair.   What's so special about arm hair???
• I have maintained a small amount of stubble on my head throughout the process.  Everyone says is looks really light.  If it comes back light, it better be blonde light and not GREY/WHITE light.   Craig has had an ever increasing amount of white hair since I met him and I have always made fun of him.  He'd have way too much fun if my hair comes back grey!
• My eyebrows have definitely thinned.  For once in my life having bushy eyebrows is working in my favor.
• I really wish my leg, armpit and old lady facial hair don't grow back.  (With the radiation, it is likely the armpit hair won't come back on my right side.)  
•  My upper lashes are mostly gone and the lower are thin.  I miss my eyelashes.   Hopefully they'll grow back quickly.
• I lost all my nose hair (early on) which means my nose has been running for 3.5 months.

Overall, the hair loss process has not been as awful as I thought it would be.  It has been a cold winter to be bald but luckily I have lots of warm winter hats!   I am hoping by Hawaii that I have enough hair on my head that it looks like short haircut rather than post-chemo hair.

Port is out!

My port was successfully removed today and I could not be happier.  It went smoothly although I ended up at the hospital for longer than I had anticipated.

I arrived at 10:15 which was the time the told me to be there.  I had never asked what time the actual procedure was and did so after they checked me in and took my vitals at about 10:20.  The procedure was not until 12:00pm AND the surgeon had added another patient in the morning so it was likely to start late.  I was not happy and had not really prepared to wait that long.  I was sent back to the waiting room to hang out for what turned out to be the next 90 minutes.  The time actually passed quickly.  They took be back into pre-op at noon.

Since I had opted for local anesthesia, I did not need an IV. Basically, I just had to change into a gown in pre-op.  They took me into the operating room at about 12:45pm.  When I met with the surgeons PA last week,  he made a comment that the only bad thing about local anesthesia was that I would have to listen to his and the surgeon's jokes.  I thought he was kidding but it turns out he wasn't.  The surgeon literally has a nurse read from a joke book during the procedure. (I assume only when the patient is awake...).  A nurse named Linda was assigned that task. She read a few terrible jokes while I was getting numbed up.  (The lidocaine shots were not particularly pleasant.). The surgeon then left the room while I was getting numb and Linda and I started to chat.  She was lovely, asking me about the kids.  Turns out she lives in the next town over from us.  When the surgeon came back, I told him I preferred to chat with Linda rather than hear bad jokes. Also, I figured I should not be laughing and moving while he had a scalpel near my carotid artery!!

They got me all draped and started removing the port.  I felt some pressure but no pain.  I was afraid I would feel them pulling out the tube that went into my vein but I felt nothing.  (I did smell something nasty.  Not sure what it was and I didn't ask.). I think it took about 10 minutes and it was done.  I am SO happy I did not have anesthesia for the procedure as it really was no big deal and I now don't have to deal with waiting for the anesthesia to totally wear off.   It seems to take longer and longer each time.

They wheeled me back to recovery around 1:15pm.  I had a quick drink, got dressed and was on my way.  There weren't any post-surgical instructions (other than the surgeon telling me to take Tylenol for any pain) and I walked myself out and drove home (stopping off at Target to pick up some random stuff and a coffee).  I took Emily to dance class.  I am a little sore and tired so I will head to bed early. I am glad this is done.

Tomorrow marks the 4th anniversary of my bilateral mastectomy.  That was definitely the most invasive of all the surgeries I have had in the last 4 years.  Today was the 7th surgery and the easiest one.  I feel a sense of closure in my cancer surgery process. I like that. It helps convince me that this is my ONE and ONLY recurrence!!!

Port eviction date TOMORROW

Tomorrow, that ugly bump in my chest will be removed, hopefully giving me plenty of time for the scar to fade before bathing suit season and our HAWAII trip (which starts in 3 months and 18 days).   At the end of the day, I am very thankful to have had the port as it did make chemo much easier and my veins are still in great shape.  Julie, Craig and others... you were right!   It is important for my veins to still be good since after radiation I will only be able to have blood drawn from my left arm.  More on that in a later post...   Other than a few weeks in January, when the port really bothered me (it kind of burned), I have hardly noticed its presence.  Well, except for when I get dressed every day.  Only certain tops cover it up so I have to be careful about what I wear because no one wants to see my ugly port!

The procedure to remove it is quite simple.  It will only take about 10 minutes and will be done under local anesthesia. I am a bit freaked out about being awake for the removal but I am finding the anesthesia hangover lasts longer and longer each time I have it, so happy to avoid it.    I can eat in the morning and drive myself to and from the procedure.  Say a little prayer it goes smoothly!

I am very happy that my oncologist feels confident that I won't need the port anymore and can have it removed before radiation starts!

Chemo #8 - Done, Done, Done Done!!!!!!!!

On November 18 when I started chemo, the end of February seemed VERY far away.   They say "the days are long but the years are short" and that has been so true with this experience.  Some days were incredible wrong and hard, but now that I made it, I realize that 3 months is a relatively short period of time in the grand scheme of things.

I got a picture with my awesome chemo nurse, Mary-Beth:

(There is a bow and a sticker "It's party time!) on the chemo bag.)

Dr. Sinclair and I talked about next steps.  I'll go in for a follow up appointment with her in 2 weeks so she can check my counts (mostly iron) before deciding when to start the ovarian suppression.  The suppression will obviously totally mess with my hormones and make me tired, so she doesn't want to bombard me during radiation (which also makes people tired), especially if my iron is so low.  (Bought some spinach on the way home from chemo to help with my counts!). Once my ovaries are suppressed, I'll star taking Femara.  This is not the drug that was in the study I had found a few weeks ago.  That other drug and Femara have almost the same success rates but Femara seems easier to tolerate. I'll be on it for at least 5 years and maybe 10.  At some point I'll consider removing my one remaining ovary to avoid the every 3 months shots.  I can't handle the idea of surgery right now so that is a later thing. 

Chemo itself was the usual.  At the end, Mary-Beth presented me with the following certificate. I gave her a huge hug and started bawling.  Mary-Beth definitely made a horrible situation a little bit better. I'll still see her at the support group and for my ovarian suppression shots.

I'll feel officially done with chemo by the beginning of next week when I am through the worst of the side effects.  I meet with the radiation oncologist on Friday and get the port out next Tuesday. Woohoo!

Chemo #7 Done

I finished second to last chemo treatment on Wednesday.   My Mom flew up the Friday before and will be with us for three weeks, which is a HUGE help.  Craig was traveling for part of this week and will be working a lot for the rest of the month so it is nice to have the company. 

The treatment itself went fine.  We met with Dr. Sinclair first and I talked about some of the side effects I have been having - blurry vision, sore jaw, joint and bone pain, and neuropathy (tingling and numbness in my fingers and feet).  All are normal for Taxol.   We also talked about post-chemo treatment - radiation (which will start March 11) and hormone therapy/ovarian suppression.   It is still TBD when I will start that.  She wants to give me some time to recover from chemo as shutting down my ovaries will yield its own unpleasant side effects.  We might even wait until after our June trip to Hawaii to get that process started. 

Three days out, I feel ok.  I had the usual neulasta back and neck bone pain yesterday, which was no fun.  Today, I'll feel more joint pain in my legs.    Craig and I are hopefully headed out to dinner tonight with friends, as long as the latest snow storm does not mess up our plans.  Thanks to Mom for babysitting!

Two weeks from now I will be done with chemo treatments!!!!

Happy day!

Thank you to the New England Patriots for winning the Super Bowl in rather dramatic fashion last night. It mad Craig and Raymond VERY happy and the universe owed them some joy amidst all the crap we have been going through as a family these last few months. We watched most of the game at a friend's house but Raymond was a bit tired, having gone to the Bruins game on Saturday night, so he and I came home before the game was over and watched the rest of it together.  It was a fun moment to share with him and I took this picture right after the thrilling end of the game.   Wow, my head is shiny!   ;)

I'm still pretty achy from last week's Taxol treatment but this feeling is better than the complete exhaustion and nausea from the AC treatments.  Only 2 more to go!   I finish THIS MONTH.   February seemed so far way when I started in November. 

Once chemo is done, it appears things will move pretty quickly.   I'll get the port out ASAP and I think I am starting radiation on March 11.   That means I will be done with this phase of treatment by the end of April.  Maybe we could have gone to Disney World as planned in May but Hawaii will be a much more special trip for us.  Of course I am starting to be a little scared for post-treatment life and how I keep the cancer fear at bay but it will be nice to not have life revolve around how I am feeling in a chemo cycle. 

Chemo #6 Done

Yesterday, I had chemo #6.  Luckily it did not get too messed up by the blizzard we had on Monday/Tuesday.   The cancer center did a delayed opening so my appointment got pushed back from 9am to 12:00pm.  I was afraid it would be packed in there and that the treatment would take forever but it went pretty smoothly.  The only change was that Dr. Sinclair came to see me in my infusion room rather than having the appointment in an exam room.

We started talking about post-chemo next steps since I only have 2 more to go after today (woohoo)!   I'll be getting the port out right after chemo ends (WOOHOO!) so I'll see the surgeon's PA at my last chemo on the 25th to get that scheduled.  Dr. Sinclair will send an email to Dr. Lingos, the radiation oncologist, to get that ball rolling again.   That should start 2-4 weeks after chemo ends (and last 6-6.5 weeks).    We also talked about what medication I will go on when this is all over.   There was a new study that just came out in December indicating that Aromasin is my best option.   Dr. Sinclair plans to discuss this with Dr. Winer when she sees him today to confirm that he agrees.   As part of this drug, I will need a shot every three months to suppress my ovarian function, putting me into menopause.  I am not looking forward to that but I know it is my only option!

The treatment itself was easy.  Many thanks to neighbor and friend, Jen Kelly, for taking the kids all afternoon and feeding them (and me) dinner! (School was still closed due to the storm.) Thanks also to neighbor, friend and 4 year breast cancer survivor Carrie for taking me to chemo and hanging out with me for the day. We chatted the whole time so it made it go by really quickly,  They cut my benadryl in half so I did not sleep the whole time.  It still made me feel a little woozy. 

27 more days until my last chemo!!!!

Taxol rocks!

Ok, that is definitely an overstatement but I have felt so much better than I did after the AC treatments.   My biggest complaint has been joint pain and weakness.  The weakness part has me feeling like my legs might give out underneath me, especially when walking down stairs.   But no nausea and I am not even close to as exhausted as I was after the first 4 treatments.   I am so relieved.  Only 35 days until my last chemo treatment!

At my last appointment, Dr. Sinclair and I talked about my continued issues with being short of breath and dizzy, especially when I get up too fast (which I am always prone to but has been much worse with chemo).  We also noticed that my pulse, which had been tracking in the 70s, shot up to around 100 and has stayed there.   (I have been checking is periodically.)    This week, I also picked up a nasty cough, which has me sounding like a chain smoker and definitely has not been helping with the shortness of breath.  Luckily, I had an appointment scheduled for today, an 8 day check-in after the first Taxol treatment.   Given the cough and continued other issues, they decided to send me for the CT Scan which would allow them to check my lungs for signs of pneumonia and a blood clot.   Luckily, my lungs are clear so basically I have a cough and low red blood cells/iron and dehydration causing my issues.   I got some fluids today and will do my best to try and drink more.   I have a metallic taste in my mouth with makes stuff taste not great but luckily I don't seem to be having the other mouth issues I had with the AC (burnt tongue feeling, thrush and other throat issues). 

I got to see with my favorite chemo nurse, Mary-Beth, today. We realized we had not seen each other since before Christmas so we spent a few minutes catching up.  She has three young kids (ages 9, 6 and 3) so we have a lot in common.  She should be there for my remaining 3 treatments.

Chemo #5 - Done!

Today I had chemo #5, switching to a new drug called Taxol, which is supposed to be "easier" than the adryamiacin/cytoxan combo.  So far, so good. 

The day did not start out great.  When I arrived for my blood draw, I found out the my regular chemo nurse, Mary-Beth was not in because she was at some sort of meeting in Boston. This must have come up last minute because she had been on my schedule and she hadn't told me she'd be out when I talked to her last Monday.  I was disappointed because I was definitely nervous about starting the new drug.  Sandra, her stand-in was great and quickly put my mind at ease.

Next, I saw the physician assistant for the surgeon who installed my port.  I had been having some discomfort with it last week so they scheduled some time with him to take a look at it.  What I am feeling is totally normal. I think part of it is the bulkier coats and scarves I am wearing now in the cold which are rubbing against the port.  Also, the swelling has totally gone down and I have lost a few pounds with the chemo which means there is nothing but skin "protecting" the port.   We also talked about when I can have it removed, which is pretty much right after chemo ends.   I am VERY excited about that.   I really want the scar to be mostly healed before the big Hawaii trip at the end of June.  (My oncologist said if the port is really bothering me, that I could get it out at any time since I have few treatments left and my veins are pretty good.  Since I went through the trouble of getting the thing, I'll keep it in until the end.  Plus, it is soooo much easier for the nurses!)   The procedure to remove can be done under local anesthesia and takes about 10 minutes. I can even drive myself to it.   I can't wait to get rid of it!

Then, I saw Dr. Sinclair, my oncologist.  We talked about Sunday's ER visit.  My counts are mostly back to being ok, so no further potassium or magnesium is needed.  I felt mostly back to normal this morning, which was good.  We also talked about my shortness of breath issues (which I almost forgot to bring up because I hadn't written them down).  My iron is low but not dangerously low so she is a little worried about it.  If it gets any worse, she wants to know as she'll have me do a CT Scan to ensure I don't have a blood clot.  She thinks it is probably related to the anemia and dehydration since I am struggling with drinking.   I will go in for fluids 2 times this cycle to boost me a bit.  We'll see if that helps.  We talked about the Taxol and potential side effects and how to manage.  She keeps promising that this will be better - less nausea and fatigue (although there will still be some).  There is also the potential for joint pain which I can take Aleve for.  Mild exercise also helps so I need to take more walks.  Finally, we talked a little about the ongoing monitoring I will have and who I will see.  It is up to me if I see her or Dr. Winer or both of them.  I think I would opt to see her mostly because I like her and she is close but also to see him once a year to stay connected.   That is a later decision but I like that she is open to me seeing both of them.

Then it was time for chemo. My pre-meds were compasine (anti-nausea), pepcid (heartburn is a common side effect) and a rather large dose of benadryl to prevent an allergic reaction.  I had also taken steroid pills at 11pm and 5am, to temper an allergice reaction, which led to a terrible night sleep.   The benadryl made me incredibly sleepy so I slept through most of the 3 hour Taxol admission.   Next time, they might cut the dose a bit so I am not so drowsy!   I am very happy to report I had no allergic reaction, which I was a bit worried about.  Had that happened, they would want me to switch to the 12 weekly doses of Taxol, which would extend the timeline out by 4-5 weeks.  I definitely don't want that.   So I also need to hope the side effects are manageable because if I am really struggling, they would consider the 12 week plan.  I'll do my best to suck it up so I can stick with my last scheduled chemo dose on February 25!

On a side note, I have mentioned a Hawaii trip in passing but provided no details.  Craig and I decided that at the end of all this cancer nonsense, we need a fun family adventure to celebrate.  Last time, I got beautiful diamond earrings, which I love and wear every day, but only I really benefit from them!  This time, the cancer journey is so much longer and disruptive to our family so we all need to be in on the end of trip gift.   We will spend 1 week on Oahu at the Aulani Resort that is a Disney property, thereby using our Disney Vacation Club Points we had planned to use in May at Disney World.   We will spend the second week at the Grand Hyatt Kauai Resort, where Craig and I stayed in 2001.  Kauai is beautiful and the resort is amazing.  We are all so excited for this light at the end of the tunnel.  Hopefully I have at least some hair by then!

Not how I planned to spend my Sunday

After feeling really great the last 2 days (and even having friends over to watch the Pats game on Saturday night), I woke up feeling really blah on Sunday.  I went back to bed for a little while and could tell when I woke up that I was getting a fever.  It was only just over 100 but I had taken Tylenol an hour before so I decided to call the on-call oncologist.  He recommended going to the ER to check my blood counts and to potentially get some fluids.   Emily's birthday party was happening Sunday afternoon, so we decided Craig would go to the party.  I called our neighbor Carolyn, who is a nurse and has high school/college age children to see if she could bring me, which she could, so we embarked on a long day at the ER.  (Carolyn is also the person that gives me my Neulasta shot the day after chemo so I don't have to go all the way to Dana-Farber.)

It was a ZOO there - almost as if there had been some sort of mass casualty incident!   There were people everywhere - in beds and chairs in the hallways... in rooms...  It was insane.  It was a lot of people with flu like symptoms.  The nurses were commenting that people didn't come in on Saturday because they were watching the Pats game and then the flood gates opened on Sunday.   Given my compromised immune state, they got me into a private room very quickly and I masked up.   They did a bunch of blood work and my potassium and magnesium came back low so they gave me some pills for that.  (Most of my other counts, which have been low, were pretty good, which was a bit surprising!)   I got Zofran for the nausea and fluids for the dehydration.   They did a chest x-ray (which came back fine).  I saw both an ER doctor and the on-call oncologist.  At the end of the day, they aren't really sure what was wrong -maybe I had a stomach virus or maybe the symptoms were chemo related.  All in all, I was at the ER for 4.5 hours.  It was a long day.  It was AWESOME to have Carolyn there with me as she spoke "nurse" and would ask the questions I forgot to ask and filling in my symptoms when I forgot any.  (Meanwhile, Emily had a blast at her birthday party!)

I came home and pretty much went right to bed.  After napping for a little while, I woke up feeling better.   And this morning, I felt even better, although now I am pretty tired.   I spoke with my oncologist's office this morning.  At first she wanted me to come in for fluids but when I told them I had a lot of fluid yesterday and was feeling better today, we decided I did not have to go in.  Hopefully, I am ok to get my next treatment on Wednesday!

4 years ago today...

Four years ago today, you could say my cancer journey officially started.   It was a Saturday afternoon and we were having friends (the Harringtons and the Eastwoods) over for dinner.  It happened to be the 4th anniversary of Craig's sister's breast cancer diagnosis and she posted something about it on Facebook.  I took a shower midafternoon and decided it was about time that I did a self exam as it has been way too long since I had done so and I found a lump.   Luckily, I did not ignore it and when it was still there on Monday morning, I went to my gynecologist who ordered a mammogram and ultrasound.  That happened on Friday, January 14 and we knew that day it was cancer (although the biopsy did not happen until the next week).   Hard to believe that 4 years later, I am midway (WOOHOO!) through chemo on cancer diagnosis number 2.      My message for all of you is to be VIGILANT about your health and your bodies.   Had I ignored that lump or not done that self-exam, who knows what would have happened.  

This chemo cycle has definitely been better than the last one.   I was still tired but not out of my mind exhausted and weepy.   I am struggling more with being super short of breath, thanks likely to the low iron.   I had to sit down in the neighbors driveway on Monday on the way back from the bus which was pretty scary.  I really thought I was going to pass out.  Since then, I have been driving the kids down the street in the morning.  I feel better by the afternoon so I walk down then.   I am hoping my iron levels will come back up when I switch to the next chemo drug (Taxol) as I hate not being able to just get up and go when I want.  I feel like a 90 year old woman sometimes.

Yesterday, I went to the breast cancer support group at Dana-Farber for the first time.   (Thanks to the friends who took the kids and ended up feeding them dinner when the group ran long!)   There were 5 women there.   Three 50+ women who are 6 months - 2 years out from their treatment who have been part of the group for a while and then one 40 year old woman who also was attending for the first time (Jenna). Jenna has had her first round of adriamycin/cytoxan (what I just finished) and had an even worse time with it than I did.  She had terrible nausea for 6 days that no medicine seemed to help.   She is going back for her second round today and will talk to the doctors about the nausea as there HAS to be something else they can try to ease the nausea.   Please say a prayer for her as she seriously was considering NOT going back for a second treatment but we convinced her otherwise and gave her some ideas to discuss with her doctor..   (I'm pretty sure I freaked out the other attendees when I told them of my recurrence AFTER a bilateral mastectomy, as some thought that was not possible...  I kept telling them I am definitely NOT the norm.)

Thanks to everyone who reached out to me over the weekend with kind and encouraging words.  It really helped me make it through the worst part of the fatigue.  I am lucky to have you all in my life!

My next chemo treatment is next Wednesday.  We have had to shift back a day as my oncologist will be in Boston on Tuesday.  I am happy to have one more day of feeling good before the next treatment, although everyone has promised me the Taxol will be sooooo much easier than adriamycin/cytoxan and I am banking on that.  The fatigue should not be as bad and people usually bounce back more quickly.  A big risk is an allergic reaction to the Taxol, so I am praying that that does not happen for me and that I can handle the bigger dose and stick to the 4 cycles every 2 weeks and not have to switch to a weekly dose for 12 weeks.   That would push out my completion schedule by a month and I really want all the treatment to be done in May!