Month: January 2018

This morning was my 2 week check up with my Oncologist, Dr. Sikaria. She had the ultrasound report, but she was confused by the fact that they could not find the marker/clip that was left behind to mark the tumor area when they did the biopsy last September.

I explained to her what the ultrasound tech explained to me, unless she can see the clip in two different planes/angles, she cannot “claim” the clip. She could only find it in one angle, all other angles she tried the clip faded into the breast tissue as clip shows as white and breast tissue shows as white in an ultrasound. Her response was “Oh that explains a lot.”

She is pleased with the progress, but as she explained to us, there are no studies that show if 12 cycles of Taxol are better than 8 or 10 cycles, there is only studies that show 12 cycles of Taxol are better than 6 cycles, so we have to evaluate if the remaining cycles are worth the risk of permanent neuropathy and/or other damage to my body. Since I have noted marked improvement in my overall strength/tiredness, and this past week improvement in my neuropathy, it was decided two more weeks of Taxol and we will reevaluate again after those two infusions.

I told her I am comfortable with this, and when she asked me if I would be comfortable with stopping chemo at this point altogether, I told her we had discussed this and I’ve thought about it and with Blink not being measurable in ultrasound I was OK if we stopped now, but I would be more comfortable with getting all the chemo I was scheduled to receive. She understood that as well. So we’re trying two more weeks.

I asked her about my annual mammogram, she said we would follow up on that once we’re done with treatment. She was not worried that my left breast has not been “x-rayed” in about 15 months since I had an MRI last September.

I also asked her about a flu shot, should I get one or was it too late. She could not believe we had not discussed this prior to starting chemo, and then she went back through her notes and realized I started chemo before they received this year’s flu shot. She said an emphatic yes, that I should still get the flu shot and today, tomorrow or Wednesday would be perfect timing to have the flu shot, just not in the three days after chemo infusion. So, I was able to get a flu shot this morning. Glad that is out of the way. I’ve been worried about going out in public due to the severity of this year’s flu season and my compromised immune system. I know this year’s vaccine is only 30% effective at best, but I figure 30% is better than nothing.

We got home, ate lunch and watched the last two episodes of The Crown for season two. Then we both laid down for naps. Mine lasted 2 1/2 hours…. I didn’t realize I was so tired. I wonder what time I’ll be tired tonight now.
On another note, the hot flashes from chemo/menopause have been brutal the last week or so. As I type I am having a hot flash from hell and would love to be naked under one of the vents in the house right now as the AC just came on. Oy, this is hard to deal with. There are times when I am falling asleep a hot flash will hit and I am awake for another hour or so after said hot flash. And of course, another one hits.

Life is trying to keep cool

First let me start with Thursday and Friday, I was tired, but again, not nearly as bone dragging tired as I had been when I was getting both the Taxol and Carboplatin.  This week I did noticed marked improvement in my neuropathy.  I am beginning to think I actually complete the last four cycles of chemo.  Now I just need to find out if Dr. Sikaria feels the same way when I have my follow up with her on Monday.  Even if it’s decided that I don’t need to finish the last four cycles, I am good  Blink is not measurable in ultrasound.

I have still been going to bed fairly early.  Friday night I stayed up until after 9 PM, but I was also awake at 2 AM and could not get back to sleep.  I think I was excited for my cousin’s wedding.

Last year my cousin proposed to his girlfriend and she said yes.  The bride’s family is from Chicago, so that is where the wedding was planned.  Up until my diagnosis and then resultant treatment plan, I was planning on attending that wedding in Chicago.  Once we knew my treatment plan and schedule it was readily apparent that attending the wedding would be out of the question for me.  I was so sad when I realized I would not be able to attend my cousin’s wedding.

When my other cousin – Deda was visiting me last year she came up with a plan so I could “be” at the wedding without having to “be” there.  We told no one of this plan.

Yesterday afternoon the pictures starting pouring in through several apps, and I was able to see most of the wedding and people were able to see me.  Although, I must admit, I was taller than I have ever been in my life!

 

 

I even got to dance!

And because my cousin and his bride never met a photo booth they didn’t like, there was one included at the reception:

 

 

 

 

 

 

There were many more photos, but I won’t bore you with all the gory details.  I love my cousin/sister Deda and her bright idea to keep me involved in the wedding celebration.  It was the next best thing to being there.  As I said, I was surprised at how tall I was.  Deda decided I would like to be as tall as the rest of the family for once when Kinko’s asked her how tall the cutout should be 5 feet or 6 feet.

I finally had to sign off with the family last night as my bed was calling me and they were still having fun in Chicago.  I love my family and their creativity!

Life is celebrating family, even from 2,000 miles away

Did my normal routine to get ready for today’s chemo infusion.  Got up, checked emails, fed the Toothless Wonder cat who has decided the last few days, breakfast needs to be eaten inside.  When he’s done eating he likes to look out the front window…

He did spend time in my lap getting loves and brushing before he decided it was time to go back outside.  From there I showered, dressed and applied my temporary tattoo.  Made sure my electronics were charged and started prepping my chemo bag.  I ate breakfast and later made my lunch as I really don’t feel like eating much after chemo, tummy really slows down after chemo.  I feel peckish after chemo, but a small snack is about all I can handle.

I was hoping that since we stopped the Carboplatin I would not have to have a finger stick today for a recheck on blood work.  No such luck, they called me back for a finger stick.  ANC yet again.  Like last week, yesterdays draw came in at .4, today 1.4.  Red and White Blood cell count is still low overall and my liver was a little wonky, but not enough for them the cancel today’s infusion.  

I started feeling tired about halfway through my infusion.  I am tired now, and have a feeling tonight will be an extra early bedtime night.

Monday is the follow up appointment with Dr. Sikaria, depending on what happens with that appointment; today may be my last chemo infusion.  Knowing that Blink is not measurable in Ultrasound, I would be slightly happy if today was my last infusion.

When I was at Group last night, Heidi finally was able to make a return.  She’s been going through hell on her Taxol infusions.  She ended up in the hospital last week, her white cell count fell to 0, she’s got chemical burns in her hands from the chemo, add this to her exhaustion and she has been through hell.  Her last Taxol treatment has been cancelled, she is very happy about this and her surgery has already been scheduled.  She tested positive for BRCA1 and BRCA2 so she is having a bilateral mastectomy as well as an oophorectomy (removal of her ovaries) as she is at high risk for ovarian cancer as well.  Other than her genetic testing coming back positive for the BRCA genes, we both have the same cancer.  I felt bad when I was the one who broke the news that prophylactic removal of your breast does nothing to reduce the chance of recurrence of our type of cancer – highly aggressive & triple negative.  She looked a little stunned and felt bad that I said this when I was asked why I wasn’t going the prophylactic route.

The other thing that came up is her oncology surgeon is Dr. Ali-Jones and she really likes her.  She’s petite, calm and takes her time, answers all questions and makes you feel at ease according to Heidi, who is a very active person and manifests all her energy in her body language and how she talks.  I love her energy, even when she feels like she has none.

Grace was also back last night and she shared how she has her first follow-up appointment with her Oncologist since her last treatment almost a year ago.  She is going to ask her if the puffiness that has not gone away completely from the chemo will every go away.  I am wondering at her answer as I have noticed puffiness in my face as well, along with my hands and feet.  Grace still says she sees it in her face.  This is not something I have had come up in any of my reading/research, so was not aware that the puffiness may not go away.  Great….

Today my neuropathy actually felt better, not as much numbness in my fingers and lip, and my feet hardly bothered me at all.  Just in time for the next infusion.  This is something to tell Dr. Sikaria when I see her on Monday.  I also need to remember to ask her about my annual mammogram which is due.  Should I get this done so we actually have updated images of my left breast?

I am sending good thoughts to my cousin and his bride to be who get married this Saturday in Chicago.  I hope they made it in to Chicago with no issues today to get ready for their wedding and my prayers are with all my family that are traveling tomorrow to Chicago to attend this wonderful event.  I wish I could be there, but there is just no way I could make a journey to Chicago at this time.  I wish them both well, and that their wedding is all they hoped and dreamed of while they planned.

Life is celebrating my family from afar (while I nap…)

I stayed up late again last night, this time I stayed up until after 10 PM! I am impressed with myself. I didn’t wake up until 7 AM this morning. Which on a blood work day, kind of puts me behind schedule since we try to leave by 7:40 to get to the lab before 8 AM.

Today was also the day of the ultrasound on Blink. My appointment was set for 1 PM and of course at 1:30 PM we’re still waiting in the lobby for me to be called back. Other than the long wait to be called back, the ultrasound went well.
The Tech pulled up my last images, and was reviewing them while I stripped from the waist up to get in a gown (opening to the front) only to be told as soon as I had it on to remove my right arm from the gown. Oy. Lay down on the table, here’s a wedge to help prop you up so your right breast is presented at an optimal angle, here’s a towel drape, raise your right arm and warm gel is now applied and go.

The Tech could not find Blink, or anything that resembled Blink. She went over the area slowly, ultrasound tool moving bit by bit over the bottom half of my breast, trying to find the clip that was placed in Blink when they did the biopsy. She could not get a good reading on the clip as it shows up as white along with other healthy breast tissue. She thought she could see it one way, but could not verify with a secondary direction. She kept going back and forth over the area where she thought the biopsy had been taken, and further out from various angles, and then she told me she could not find anything to measure. She was going to get the Radiologist to come take a look since she was not finding anything.

Tech came back a few minutes later, with no doctor in tow, and said the doctor looked at what she had taken images of and agreed with her, there is not enough of Blink left to be able the measure through ultrasound! Chemo has done its work, Blink is nothing. This is such fantastic news!!!

Hubby said he know feels relieved that if chemo is cut short at least we know Blink is nothing. I feel the same way, such a relief, and knowing Blink is nothing I am ready if Dr. Sikaria decides that the risk of permanent neuropathy is not worth the continuation of chemo. I can agree with this decision should it be made next week when I have my follow up with Dr. Sikaria.

If I had the strength I would be doing cartwheels right now. I am so excited by this news. Thought I was going into tonight’s Support Group meeting with anxiety over the possibility of chemo being stopped early, but now I can go in the knowledge that if chemo is cut short, I am in a good place.

Life is moving forward without Blink

I slept until 6 AM this morning, probably because I stayed up until the kids left last night. I was tired and was seriously thinking of just kissing them all good night and heading to bed, but I toughed it out.

One of my sons from another mother stopped by on his way to the “pot shop” to see if I was doing alright, and if I needed anything. So sweet of him! I’m still dealing with the ache across my shoulders from the Taxol, so asked him to pick me up a small bottle of CBD oil in a 10 to 1 mixture to see if that would help. He did and talked to the folks at the shop and they said the best pain relief comes in the 1:1 ratio oil. Not sure I want to go that far. I am testing the 10:1 for right now to see if that provides me the relief from this ache. The heating pad helps, but I’m also having hot flashes throughout the day and a few at night, add in the heating pad and I get really HOT.

This morning was my appointment with the oncology surgeon. My surgeon is 8 months pregnant! If I am able to complete the next 5 treatments my target surgery dates would be right before she returns from maternity leave. If my chemo gets cut short, I am definitely looking at surgery prior to her return to work. She decided to refer me to her colleague to be on the safe side. In the meantime she has all the current notes from Dr. Sikaria and will work with Dr. Goldberg and her colleague who will be taking over my surgery, Dr. Ali-Jones, to get my surgery scheduled.

I learned today that they usually prefer to have the plastic surgery 3 to 4 days after my lumpectomy, to be sure clean margins were obtained before the clean up and reduction/lift on the other side to match. Target surgery is 4 to 6 weeks after the end of chemo. Right now my last chemo treatment is February 21, that puts surgery between March 21st and April 4th. I might just be able to go up north to celebrate Passover with my family!

I have another follow up appointment with my new surgeon – Dr. Ali-Jones in two weeks. This way we have a chance to meet each other before my actual surgery. I have to remember to ask her if my port will be removed prior to surgery or if this is something she can do during my lumpectomy.

Hubby was sad that we will not have Dr. Madorin to complete my surgery, but I have heard great things about all the surgeons in this group, so I am not worried.

I also had an acupuncture appointment today and Homa and I discussed the fact that I am still experiencing the numbing/tingling of neuropathy. I am not sure if it is any better than it was before when I was getting both Taxol and Carboplatin. This, along with the fact that my digestion is so sssssllllloooooow was addressed in today’s session. As for my digestion, hours after I eat I am still feeling food in my stomach, and I eat much smaller meals now. Homa said it’s because my stomach lining has been disturbed by the chemo. Once I stop chemo it will grow back and my digestion will get better. I sure hope so! I am tired of taking two Prilosec every morning, popping a few Pepcid during the day to deal with GERD, and two Zantac every night and still having to chew on a Pepcid or two in the middle of the night.

Tomorrow is blood work for two doctors (Chemo and GP for Thyroid), and the ultrasound on Blink to see what it looks like.

Life is waiting on my food to digest

I missed posting Friday and Saturday, just because I was tired and my brain could not string enough sense together to make it worth posting. That said, I was not bone achingly, drag my feet tired. I was just generally tired. I could still function on a decent level. I could make myself food and clean up after myself. I could move myself around the house without feeling like it was going to collapse, like I had to sit every other step. This is a huge improvement. Much better than the effects of both Taxol and Carboplatin together.

Neuropathy seems to be about the same. I’ve had no pain with my neuropathy, just numbness in my fingers, feet and my lips. I think I feel it on my scalp as well, but it comes and goes so much, I am not sure if its neuropathy or just my scalp dealing with temperature changes in the air. I didn’t feel like I could knit at all yesterday, but I think I can take up my knitting again today. I have not tried yet.
We’re heading to the grocery store today rather than doing it after any appointment next week, just because this next week is filled with appointments. I have at least one appointment every day this next week. The Oncology Surgeon, an ultrasound of my breast so we can see what’s going on with Blink, my infusion, acupuncture, blood work, and another follow up with my GP, this time to renew my Synthroid Rx. (Insert eye roll here….)

I’m exhausted just thinking about all my appointments this next week, but I know this means I am moving towards the next stage of my treatment and that means I am moving towards being cancer free. Well, except for the GP, which I feel is just a gross lapse in reviewing my medications on my GP’s part. If I had been in my right mind I would have remembered to ask her about my now “annual” Rx for Synthroid, but I wasn’t and so a week after seeing her for my renewal of Paxil, I was calling in for a renewal of my Synthroid. She wants’ another blood test to see where my TSH and other thyroid measurements are currently before she renews my Rx. I just did this in September, so I am a little frustrated that she’s making me do this again. I don’t want to have to go in to review this blood work in person; I hope she will allow this to happen over the phone.

Looking forward to the kids coming over for dinner tonight. We will not get to see the Grandson though, as he has developed the sniffles over night and we cannot afford to expose me to any illness right now. Not with my immune system compromised. The Grandson had an accident at school and ran into a fence. He developed a huge hematoma on his forehead. Darling Daughter took him to the doctor the next day when it was still there to insure no problems with concussion or other issues. Doctor gave him the all clear and warned to not be surprised if the hematoma traveled to his eye, and not to worry. I was so looking forward to seeing this wonderful bruising on his head and having that absolutely fun discussion about running into a fence.

Life is numb fingertips

I was awake at 5:30 this morning after heading to bed a little after 8 last night.  I did take a Lunesta to make sure I didn’t wake in the middle of the night and stay awake from the steroids.  No aches in my upper back, no feeling like I could go back to sleep.  So far, so good.

As I normally do in the early mornings, I took the time to clean out emails, relaxed on the sofa and watched the morning news before I headed out to feed the Toothless Wonder cat.  He took his time eating this morning, so I was a little late getting back inside since we had to leave about 10:30 to get me to my acupuncture appointment.

I ate my breakfast and then got ready to go and was ready in just the nick of time.  At this point I was still feeling fairly “normal”.  Homa asked me how I was doing and we discussed I how I was feeling my normal energy levels, the neuropathy was at a minimum, my digestion is still slow.  Food sits in my stomach for a longer time and I have a constant battle with GERD despite taking Prilosec every morning and Zantac every night.  Homa then placed her needles and I proceeded to start my meditation, which lately leads to falling asleep.  Today I was actually able to meditate for a bit before dropping into a light nap for a bit.  I woke up again and continued to meditate before Homa returned to remove the needles.

We did have to stop by Cancer Care as yesterday I forgot my knitting kit bag in the infusion room.  It’s a little zippered bag that holds my tape measure, scissors, stitch holders, needle gauges, etc.  I left it on the side table next to my infusion chair I was sitting in.  I realized it once we were home a bit yesterday and needed a stitch holder and couldn’t find my bag.  I searched through everything twice than called Cancer Care, and sure enough they had it on hold for me.  They are so nice there!

We got home and had lunch; I heated up some soup I had picked out from the grocery store.  Not bad, still cannot taste things very well.  I have made it through the whole afternoon without a nap, but I can feel the tired creeping up on me quickly.

Still no body aches, which at this time last week I was already starting to feel.

I would call today a success with only having Taxol yesterday.

Life is having a little bit more energy

Since last week I could not say for sure if I took my morning pre-meds for chemo, this week I set all the pills out on the counter and put the bottles away as I took each pill so I would know for sure I had taken all my meds.

I got my day started at 4:30 this morning, so I anticipate it will be another early night for me, but I will still take a sleeping pill before I hit the sack. Last week I didn’t when I found myself heading to bed early and I was awake for many hours in the middle of the night.

I watched morning news and cleaned out emails before I fed the Toothless Wonder cat closer to the normal hour he gets fed, and then came in and started getting ready for my infusion. Showered, dressed, packed my bag, made sure all my electronics were charged and my knitting put together and ate lunch a wee bit early. Applied my temp tattoo for this week and we headed out the door.

We arrived early as usual, but this has turned out to work in my favor as for the last 5 weeks my ANC – a type of white blood cell that is critical for fighting infections has been low on my weekly blood work, along with all my other blood counts, but this is one they really watch. For the past 5 weeks in a row I’ve had to have a finger prick done at the in house lab to re-check my blood counts to insure specifically my ANC has recovered enough for me to have another infusion that will knock it back down again.

Every week we have to wait while they recheck all my blood counts and then get called back to Infusion to find out if chemo is actually a go. So far so good. Example – today the blood draw yesterday had my ANC at 0.5. Should be somewhere in the range of 1.3 to 7.4. So yeah, just a little low. Today from the finger prick of blood sample my ANC and improved to 2.6.

This week my infusion nurse was Jamie, and when she was getting my IV hooked up into my port she said Dr. Sikaria had sent a nice note about me in my file. When I asked her what Dr. Sikaria had said Jamie told me it was about my tumor and how well it is responding to chemo and she is so happy with our progress and she thanked the infusion team for their good work. Jamie was glad I only had to do the Taxol today.

Mr. S was sitting across from me in infusion room 1, between him Victoria and I we started up a conversation about our chemos. Mr. S is on Taxol as well as a few others for lung cancer, his second bout. Victoria is on something else, she had colon cancer in 2015 and it has now metastasized to her liver and lungs. She gets hooked up to pump at the end of her infusions with another drug and gets infused with this drug over the next 48+ hours. She returns on Friday morning to have the pump IV removed and give back the pump. I have also seen Victoria at the Cancer Support Community. She attends a support group there for Young Adults with Cancer on the same night Hubby and I attend our Support Groups.

Victoria will start losing her hair in the next week or so, and she’s worried about how she will look. Mr. S and I tried to tell her its ok, hair is not who you are; you can still show your beautiful self without hair. I took off my scarf to show her it’s not nearly as bad as she thinks it will be. Mr. S agreed, and we told her she might want to shave her head once it does start falling out. Mr. S agreed as he said he couldn’t take the itching from the hair shedding. I told him how I felt like I had a hair trim for 3 weeks while my stubble fell out. My neck was constantly itchy. Mr. S and I both have a little bit of hair left on the nape of our necks and we still have some eyebrows left. I even still have some eyelashes!

We shall see what tomorrow brings; maybe I will not be as tired and spaced out as I have been these past weeks.

Life is supporting others

I had my blood draw this morning, and then Hubby took me to the bank so I could transfer my disability money into my account. From there we stopped at the post office to mail of Netflix, then home so I can try and feed the Toothless Wonder Cat again before we headed out to my acupuncture appointment.
Spoke with my acupuncturist about the change in my chemo regime; she is hopeful that this will be good for me.

After having slept on the new information about my chemo and the removal of the Carboplatin, Hubby’s input on what he thinks, my mom’s comment to yesterdays post, and others sending their support, I am good with stopping the Carboplatin. I would rather stop the Carboplatin and be able to continue the Taxol for 6 more weeks than have both of them stopped sooner than planned.
That said, I am looking forward to having more energy this next week with only the Taxol being administered tomorrow.

I have reached out to my oncology surgeon and have a follow up appointment set for next week and my plastic surgeon has also been notified that we will be starting the ball rolling on surgery.

I did find out today that surgery will not be right away, they have to give my body time to recover from the chemo. It will be no later than 12 weeks after chemo ends, with the goal within 6 weeks of chemo ending. Hope my body cooperates and recovers quickly from chemo.

Now for the title, no Support Group tonight, not because of me, because of Hubby. He worked in the backyard today, replacing some termite damaged beams in our covered patio area so he can get at least a coat of primer on them before the anticipated rain on Thursday night/Friday. Hubby is hurting, his legs and his back. So he’s sitting on a heating pad trying to help ease his aches.

Figures, a night I really wanted to go to Support Group to talk about the changes in my chemo regime. Wanted some feedback from those who have gone through this already. Next week….

Life is waiting to see the changes

This morning was a check up with Dr. Sikaria.  We discussed my exhaustion, the neuropathy, my adding CBD oil and discontinued all the other anti-nausea drugs that had been prescribed.  She also palpated Blink.  I cannot feel Blink anymore, but she digs a bit deeper than I do and she can still fill Blink.  She is concerned that I am spending more and more time in “hibernation”, and that the neuropathy is constant now.  She consulted with another one of the oncologists on staff and confirmed her thought of discontinuing the Carboplatin from my chemo regime.  She feels the risk to benefit ratio is not worth continuing the Carboplatin at this point.

Dr. Sikaria has wants be back in two weeks for another check up.  At that time we will decide if continuing with Taxol for four more weeks will be in the cards for me or not.  She is worried about permanent neuropathy and doesn’t feel that continued exhaustion on Taxol is worth the treatment.

I am not sure how I feel about all of this.  I am relieved to be getting rid of one of the drugs that is making me so tired and contributing to the neuropathy, but this scares me as well.  What if by reducing my chemo regime leaves me less protected from recurrence?  What if this means Blink really does continue to spread?  I know that Carboplatin is not a standard treatment for my kind of cancer, but knowing I had multiple drugs going into this fight with me.  Even knowing the best treatment has always been the Adriamycin and Cyclophosphamide followed by Taxol for triple negative cancers and losing the Carbo should not in the least effect my treatment, it’s still leaves me afraid of the future.

Dr. Sikaria has also ordered an ultrasound of Blink before my next appointment with her so she can see the progress.

As I was instructed, I have reached out to Dr. Madorin’s office to start the set up for surgery once I was 6 weeks out from completing chemo.  Dr. Sikaria believes I am still an excellent candidate for lumpectomy followed by radiation.  I am afraid that I may lose my whole breast, not just the lump.  I have a plastic surgeon and will meet with her again to prep for surgery, and confirm with her  if the whole breast has to go, reconstruction is my wish.  I am sure there are more details we will have to work out prior to surgery and as soon as I have an appointment with Dr. Madorin, my cancer surgeon I will reach out to Dr. Goldberg for the follow up on the reconstruction/rebuilding of my breast tissues during the cancer surgery.

Dr. Sikaria said if she does decide to end my Taxol treatments early she will reach out to Dr. Madorin directly to have my surgery moved up to coincide with the end of chemo treatments.

Now I wait to see what this week brings with only having Taxol in my regime and if that helps with the exhaustion and the neuropathy.  I hope it eases enough that I can finish all 6 remaining treatments.  I want that reassurance that finishing the planned treatment schedule.  I want that in my bucket of all options explored to beat this cancer.

Life is trying not to worry about my future