Rheumatologist

I saw the rheumatologist on Friday afternoon.  And just like I thought, he can see no reason for my joint pain.  They had run a bunch of blood tests to check for lupus, thyroid problems, inflammation, etc.  Everything was in the normal limits except my vitamin D was low - like all New Yorkers!  I do want to do some research on low vitamin D and joint pain.  My brother mentioned that there may be a correlation.

Anyway, the doctor asked a lot of questions and looked things up on the internet while I was there.  Because he couldn't find a reason for my pain, he wondered if the chemo drugs could cause joint pain.  He looked up Taxol and it says that 60% of people who took Taxol have joint pain.  I asked him if it was permanent and he didn't have an answer.  He recommends I go back to my oncologist and ask her. I go back to her in 2 weeks.

I asked about doing accupuncture for the pain.  After I had the boys, I had joint pain in my hands and feet.  I did accupuncture for about a year and felt that it helped.  Whether it helped for real or just helped me mentally....either way, it helped!  He said accupuncture cannot hurt.  I probably need to go that route.  I do not see this going away on it's own.  His recommendation is to take Advil or Aleve in max doses before bed.  I tried Advil last night and had a little bit of relief, but not through the whole night.  I took 2 Aleve tonight and am curious to see if that helps.

Plugging on......

Still postponing Tamoxofen

I met with the breast surgeon on Monday.  Uneventful.  Two seconds, a quick exam, and I handed over the co-pay.  I have to see her again next year.  I asked about my looming mammogram that is always due in November.  It was last October that I found my lumps and thus began this damn journey.  She said that I have to have a mammogram on both breasts.  This terrifies me for two reasons.  1). What if all the stitches in my reconstructed breast rip apart in that machine?  2). What if they find a lump in my right breast?  I honestly don't know what scares me more.  I shared my concern about my reconstructed breast ripping apart at the seams.  So, she said I could skip that side this time, if the mammography place agrees.  She said I will definitely need a mammogram and sonogram on the right side.

I called Elizabeth Wende Mammography and scheduled the appointment.  They looked at my chart and said, "Plan on being here 2-3 hours."  Sigh.  I can't remember if they have wine in the waiting room.  I need someone to hold my hand and a wine bottle seems like the perfect companion.

Yesterday, I had an appointment with the oncologist.  I cannot say enough good things about Interlakes Oncology in Brockport.  It was like a reunion with long lost friends!   I do love them all.  I told the doctor about my joint pain.  At night, I cannot grasp the blankets to pull them over me, I cannot turn over in bed because my elbows and hands are in so much pain, and during the day at school, if I get on the ground to work with kids, I struggle to get back on my feet.  What the hell!!?  It's like I'm 109 years old.  She ordered 5 more vials of blood to be taken, so thankfully I had put lidocaine on my port prior to going.  She also wants me to see a rheumotologist ASAP.  I was supposed to start Tamoxofen a month ago - but had to postpone with the shingles.  Now, she does not want to start it due to the body pain because Tamoxofen can also cause body pain. She looked at my nails (which are bruised and only connected by a tiny bit) and said "Ah, yes, Taxol nails.  They will grow out."  Cool.

Today the rheumotologist called me and is able to get me in tomorrow afternoon.  I know they won't find anything.  I know I'm going to be extremely frustrated.  Again.

I do love being back at school without a million looming absences.  It is a nice distraction and feels good to exercise my brain.  I am struggling with name recall and following group conversations - especially if they are social in nature.  It's weird.  I am working with 5th graders this year and have decided not to put myself through the agony of wearing a wig.  I spoke to all the classes on the first day of school and told them my story in a 5th grade fashion.  It was an absolute relief to put it out there.  The kids have been so interested in things and ask questions.  It's really great that it is out in the open and not a taboo subject.

My hair is starting to regrow.  Gray. Lovely. It's soft and fine like baby hair.  I'll get it dyed as soon as I can.  It's also straight so far (it's only about a centimeter long), which is weird because it used to be curly/wavy.  My eyelashes have also started sprouting.  Very exciting.  No eyebrows yet.  My white blood cell count it back to normal (4.8) so I would guess I could get them tattooed on, but I forgot to ask.  I have to go back to the oncologist in 2 weeks with hopes that my joint pain is figured out and  Tamoxofen can start.  Fingers crossed......even though I really don't want to be on this drug......but I figure I NEED to be to keep my life expectancy up to 90%.  I don't want to ruin their data! Ha! :)

Severe joint pain

Since August 26th, I've been suffering from severe joint pain.  I have had joint pain before - for the year after the boys were born - but it was only in my hands and feet. After a year or accupuncture, the pain subsided.  This pain is in every single joint in my body: feet, hands, elbows, knees, pelvis, spine.  It is ridiculously painful and makes me feel and look like I'm 140 years old when I try to move.  I've been trying to figure out why it came on all of a sudden.  The day that it started was also the first day that I had stopped my Shingles medication. I also wonder if I've had joint pain all along, but the chemo steroids had masked it.  I don't know, but I do know that the pain is so severe that Dave made me call the emergency number at the oncologist's office on a Sunday.  They called back and advised me to have my blood labs done.  I just got that done today.....so maybe I'll have some answers on Monday.....but, I can't imagine it's going to be anything easy to figure out or solve.

A big NO on the dentist

Who knew?  I had my regular 6 month dental cleaning scheduled for yesterday.  I got up in the chair, wondering if the chemo would have caused cavities and curious why my teeth are so sensitive to hot foods now.  The hygienist asked if I had apporoval from my oncologist to have a dental cleaning.  Huh?  I hadn't ever thought about that.  They said they would not proceed without permission from the oncologist.  They said that cleanings can dislodge bacteria that can travel right to your heart.....or something like that.  I made a phone call to the oncologist while sitting in the dental chair.  Yep, not allowed to have a dental cleaning for 2-3 months post chemo.  Sigh.  Rescheduled for November.

But wait, there's MORE!

Today was a scheduled visit with the oncologist - a post chemo checkup to see if my white blood cells recovered on their own.  I was there for a port blood draw and visit with the oncologist.  Kelly, my nurse, was taking my vitals and asking me the same questions that she always asks:  What is your level of pain?  What is your level of tiredness?  Have you had any fever or chills?  Do you have any rashes?

Welllll.......yes, actually, I do have a rash.  I pull up my shirt to show her this rash that started on my side.  She stood up immediately and said, "Uh, that looks like shingles!  Let me go get the doctor."  The doctor came back and sure enough, shingles.  I developed a series of 11 little bumps in a small area on the left side of my torso on Saturday.  I had no idea what it was.  It wasn't bothering me too much, although it itches a little and my skin hurts where it is and where it has spread to my back and stomach.  I was immediately put into quarantine.  The were using masks when they were in my little room.  Since shingles is contagious (who knew?!) I should not be around unvaccinated children, babies, elderly, chemo patients, and anyone with a compromised immune system.

Speaking of compromised immune systems - my white blood cell count is just 2.2 (normal range is 4-11), so I am kind of low for being out of chemo for 2 weeks.  It could be because of the shingles virus.  They prescribed an antibiotic that I have to take almost every 2-3 hours.  I will be considered contagious until my rash is crusty.  Almost there.  Also, every muscle in my body feels like it hurts in the last few days and shingles will cause this pain.  Mystery solved.

My red blood cell count is 35, which keeps going up slowly and means that I'm not anemic anymore.

Another blood test was to see if I am in menopause yet.  They like to get a baseline before starting Tamoxifen.  I'm been in a chemo-induced menopause for the past 6 months.  When I am in for-sure menopause, they will have to change Tamoxofen to another drug that is not an estrogen inhibitor.  There is a bunch of science behind all that but I will spare you.

Crazy - shingles - after a hellish 6 months of chemo.  I asked if there is a oncology Bingo board, because I think I must have  won by now!

Other than that, most of my side effects have hung on.  I still can't taste well, I'm tired, and my foot neuropathy is the same.  The only change so far is that my daily nose bleeds have almost stopped.  Yay.

Heading back to oncologist in 4 weeks for more blood tests and the start of the Tamoxifen.  I can't start it until my white blood cell count is normal.  She says that the side effects will be hot flashes and weight gain.  Sweet combo.  Can't wait.

Fresh new hell

You've already heard me complain about my nails - the ridges, the brittleness, the discoloration, and growing in weird shapes......but now there is fun, new stuff with my nails.

A few days ago, I thought I had banged my fingernail on something because it really hurt.  By yesterday, all my fingernails hurt incredibly bad and now many of them are turning dark purple.  So, of course, I Google.  Turns out that the weeks AFTER chemo with Taxol, your nails shit the bed.

So, every time I touch my nails - which is every minute of every damn day! - they hurt like hell.  Just typing hurts.....and getting dressed, and making a cup of coffee, and brushing my teeth.  Sweet.   And according to Google, I can just hang out and wait for them all to fall off.  Why is this more upsetting than my hair coming out?  No idea.  Oh, and Google also says it will be months - MONTHS! - until my hair follicles decide my body is not a hostile environment and graces me with some weird, gray hairs on my head.  It says not to expect your hair to return to it's former glory.....and since my former hair had no glory, I can only imagine what it's going to look like.

Chemo - the gift that keeps on giving!

I went for an routine check-up at my regular doctor's the other day.  My heart rate is 113.  So, now I have to go back in 6 months to check if I'm still alive.  Hydrating!  That is the answer to everything on this journey.

Today is my usual chemo day.  I miss my nurse and Doritos.  :)

LAST CHEMO #16!!!!!!!!!!!!!!!!!!!!!!!

LAST ONE!!!!!!  So relieved!

And I'm breaking out like a teenager....

A new side effect - Red, bumpy skin all over

Kelly in her haz-mat suit getting my Taxol ready

My foot massage :)

I have kept this with me the whole time - from a school friend who's mother battled cancer

I got to RING THE BELL!!!!  And a gift of DORITOS and a certificate!!