Author: KimJHA

This morning was grocery shopping, and picking up my Synthroid Rx from Costco.  We got there right before Costco opened and waited in the food court seating area for the doors to open.  Imagine that, Costco had no record of my renewed Rx being called in.  I called Dr. Levee’s office to find that one of the gals called my Rx into Express Scripts, which I have never used.  Nice…  They were going to call in my Rx to Costco right away.  I didn’t want to wait and I have enough Synthroid to get me through another week or two, so we left.  We will go back on Monday.

From there we hit Trader Joe’s, then the bank and finally Albertson’s.  My neuropathy is worse today, with my finger tips and nail beds hurting.  My feet are numb from my toes to about mid-arch.  The Darling Daughter suggested I use one of the electric carts at the Albertson’s rather than walk on my numb feet.  I contemplated it, but decided to use my own feet as I needed the exercise.

We finished the grocery shopping came home and Hubby unloaded the car while I put the groceries away.  From there we ate lunch and watched the Ninjago movie.  I was ready for a nap, but had a text from my boss checking up on me and then a call from my Dad, also checking in on me.

After I was done getting caught up with both of them, I took my nap.  2 hours later I was ready to watch me some Olympic Opening Ceremonies.  Hubby was out feeding the Orange Fluff Ball who only comes in the house for breakfast.

I’ve noticed over the past week or so a constant feeling of moistness on my upper back and my shoulders.  I figured out why I feel that way today, I have no body hair left if those areas.  No little fuzzes left to insulate me or keep my clothes from clinging directly to my skin.  So even when I do not have hot flashes I feel moist.

I went searching last night for information on how long it takes for taste buds to come back after chemo.  Four to six weeks for taste buds to return.  I also read that my hair will take 6 weeks plus to start growing back and it will be slow.  Fun, I almost miss my hair.  Almost.  I also found another website that looks like it is a good resource for those going through Breast Cancer – Beyond the Shock.   I will add a link on my page as well.  I never understood what Grade III meant on my initial biopsy, now thanks to this website, I understand.  Grades are assigned based on how quickly a cancer grows, Grades 1 through 4.  This along with the Ki-67 measure shows how aggressive my cancer was/is.  I wish I had been more willing to search the interwebs at the beginning of my diagnosis, not that I would change my treatment plan, as all I have researched so far indicates I am on the best course of treatment for my diagnosis.  I just feel I might have been more prepared for what was going to happen to me.  Not that I am sure anything prepares you for dealing with cancer, chemo, all the side effects, and how it will affect your life going forward.

Did I mention the neuropathy is worse today?  And it’s starting to hurt.  It’s very distracting and beyond annoying.  I’m not sure I can even knit if wanted to right now.  Not that I want to knit as I am too tired to concentrate on knitting.

The Darling Daughter sent me a text this morning that basically said I don’t need to be a hero, I have fought the good fight so far, it’s okay to not finish the last two cycles of chemo.  I will not be letting anyone down if I don’t finish the last two cycles.  After today and how bad the neuropathy has been, I really do hope that Dr. Sikaria decides we should skip these last two cycles.  I really am not sure how much more I can take of the side effects.

Life is counting the days until I can taste again

I slept in this morning, woke just in time to call the Toothless Wonder Cat in for breakfast. I got his piece of ham ready, which is what we start with, and went to the backyard. He was not there, so I went to the side door to call him from there. No answer, no orange fluff ball coming up the driveway. The neighbor across the street arrived home from dropping his son at school and told me the Fluff Ball had eaten breakfast at his house and he didn’t know where he was. After we chatted a bit, I came back into the house and put the ham away. I was tired already and a bit cold from the stint outside.

I relaxed on the sofa getting warm again and regaining my strength to get ready to head to acupuncture. I got ready just in time for us to leave for my appointment. I talked with Homa about the neuropathy and how I’ve had no break this week like I did last week. The neuropathy lessened this week, but never went away like it did the week before. Today I can feel it starting to get worse again, with pain starting to show up in my nail beds. Same with my feet, I feel it even when I am not standing on them.

Homa does what she can to help counteract the effects of chemo, but I know this is a losing battle until we stop the chemo. I really do hope yesterday was my last treatment. As much as it scares me to end chemo, I am ready to be done.
Once we returned home, I put some soup on for my lunch and Hubby and I decided to watch a movie on Netflix while we ate lunch. We chose Bright, modern age LA cop movie with Orks, Elves, Fairies and Humans. It was entertaining. After we were done, I called South Bay Surgeons to find out from Michelle what’s going on with scheduling my surgeries since I have not heard back from her yet.

I finally got through to Michelle and she said she had a call into Dr. Goldberg’s office to coordinate what dates are available for surgery. We also talked about how I don’t have my last chemo date yet, it could be yesterday or it could be February 21st, I will not find out until Monday. She asked me to call her back on Monday when I know for sure my last chemo date.

The neuropathy has continued to feel a little worse this afternoon. Hubby asked me if Dr. Sikaria suggests I should continue with the last two cycles of chemo how would I feel about that. I’ve been thinking about that all day. I really hope she will decide to end the chemo with the cycle we did yesterday, but if she really thinks I complete all 12 cycles, then I will do this. I know I am tired and puffy and the neuropathy is slowly getting worse, but I want the cancer gone more than I want to end this now. One of the women who visited on reunion night at Support Group told me she had neuropathy too during her treatment. Hers got much worse than mine is now and hers cleared up in about 6 months. She still gets it in two of her toes on her right foot occasionally. She says it’s only a few times a year at most and just a little numbness and sometimes tingling, but it goes away quickly. Knowing that, if Dr. Sikaria asks me to go the last two weeks, I will.

Hubby just asked that I be truthful with Dr. Sikaria on Monday and explain all that I am feeling right now. I can do that. He doesn’t want me to sugar coat anything. He wants this to end too. I don’t blame him; he’s my chauffeur, my medicine reminder, my cheering section and personal comedian. He reminds me to take it slow when I get frustrated with my inability to do something, like stay awake. He is stuck with me 24/7 right now and I know this has to be hard on him being my caretaker, making sure I am not over taxing myself, making sure I am eating, drinking, taking all my meds, (I said that already), reminding me we will get through this. He’s had one day off when his best friend came into town for NAMM (National Association of Music Merchants), and Hubby went with him on the first day to help him review drum vendors. Daughter and Grandson came over that day and spent time with me which was nice as it was a little scary being home by myself for that long.

I am watching the Olympics, even though opening ceremonies are not until tomorrow, NBC is airing some of the team ice skating events and moguls tonight. I’ve always enjoyed the Olympics. Takes my mind off of my tired and neuropathy. The ice is unforgiving tonight, as I have watched many of the male skaters fall that normally stick their landings. Hubby and I both noted the ice seems soft and the blades are sticking/digging in instead of sliding when the skaters are landing. Not one skater they have interviewed has said anything about it though.

Life is thinking beyond the neuropathy

Tuesday we went first thing in the morning to get my blood work done.  I’m still feeling a bit tired, more so than last week.  I called the Toothless Wonder Cat in to eat once we got back.  We fell asleep on the sofa during brushing and petting time.  Hubby captured a picture of us…

The neuropathy has dissipated a little bit, but it has not gone away.  Last week it was almost gone by this point.  Maybe tomorrow will be be better.

My tasting ability is getting worse and I am fighting yet another mouth sore.  It’s not a full on sore, but I can feel it wanting to become one.

We headed out to Support Group, and arrived the same time as “L”.  She is older and suffers from Osteoporosis.  Her Oncologist wants her on Tamoxifen now that her radiation is over.  She is afraid to take it because one of the side effects could be blood clots and she doesn’t want to have a stroke as that is what killed her grandmother.  The doctor told her if she has not already had problems with blood clots, she probably won’t have them with Tamoxifen, but she is not convinced.  No one in our group has had any issues either, so she’s not getting answers she is looking for.  We also had two new women join our group.  One is completely done with all her treatment, but having a difficult time with recovery.  The other is just starting chemo.  We also had a few gals that have already graduated from group come back for the night as a reunion type thing.  We took the time to talk to them about what they went through and recovery.  One of the gals decided she needed to completely change her life, she quit the job she was in and became a stewardess, she changed all her friends, and her lifestyle.  Wow, that is a lot of change!

I was more tired than I thought I would be so was not as engaged.  I tried to be engaged, but being that tired made it difficult to stay that energized.

Today was infusion day.  The neuropathy is still there.  Last week it was gone by Wednesday and didn’t come back until Friday.  It gradually got a little better through the day, but it’s still there.  Not good….

I got ready after the Toothless Wonder Cat left the house after breakfast.  He’s not been eating all that well as his gums are bothering him again.  I took my time as tired is still a part of my vocabulary today.  I did get up about 5:15 AM, but I think that was the steroid more than not being tired.  I reviewed emails and forwarded what needed to be addressed at work since some customers still don’t understand I am not at work right now.  I decided to go with reading again this week, so made sure my Kindle was fully charged.  Once I was washed and dressed I added my temp tattoo.  I blew the first one which was a great one!  A guy walking while holding a canoe over his head.  It was referring to Port-age.  I had to pick a new one at the last second.    I had taken all my pre-meds except the Benadryl, as I have to take that about an hour before my appointment, so I take it right before we leave.
I already know based on last week’s late blood work still not showing any rebound in my ANC that I would have to go through a finger stick today to insure my ANC has recovered enough for infusion. It tripled overnight, as it has the last 8 weeks. I cannot wait to do blood work the day of treatment as the authorized lab cannot turn the results fast enough, so I have to go the day before and when my numbers do not come up good enough, then the in house lab at Cancer Care is authorized to run a mini panel CBC that insurance will cover. I talked to my chemo nurse about the rash on my hands. She called Deborah my nurse practitioner who said yes it’s from the Taxol and since it’s localized to specific spots on my hands and face and does not itch we’re still good to go with today’s infusion. If it starts to itch I should try Benadryl and/or Hydrocortisone cream to help control the itching. If it starts to dry and crack the skin I am to call in right away. I have a follow up with Dr. Sikaria on Monday, so I think we’re good until then.

I am really hoping this is my last infusion. I am ready to be done. Maybe this will be my last time with this view:
or being hooked up like this:

 

 

 

 

 

 

I have not heard from the Surgery Scheduler yet, so called South Bay Surgeons and asked what is going on. Seems Michelle is the one who does the scheduling for dual surgeries and she was not only sick on Monday, but was sick yesterday (Tuesday) as well. So they asked me to give her until mid-day tomorrow to get caught up again before I try calling back.

I did remember to call Dr. Levee’s office (my GP) about renewing my Synthroid Rx. Melissa forgot to call me back and tell me yes, Dr. Levee was authorizing my renewal. She called it in late yesterday. Friday should be grocery shopping day again, so I will have Hubby take me over to Costco to pick up my new Rx for Synthroid. Thank God that one is done.

I made the mistake of asking Hubby to pick me up two fish tacos on his Del Taco run tonight. I knew I shouldn’t eat that late today as chemo really messes with my stomach. Digestion is slower than molasses in January! Now I have food up in my throat and I am ready to head to bed.

Life is waiting for Monday

Some time during the late afternoon Friday and Saturday morning I arrived home.  My brother shipped the six foot cut out of me to me!  I also forgot to mention that Deda brought me gifts from Chicago, a nice Chicago T-Shirt, a small jar to hold my “stash” already labeled “Chicago Stash”, a small zippered bag to use for what nots, and another T-Shirt that said “Rooting for the Commercials”.

Sunday Deda and I smoked part of one of the blunts included in my gift bag. Now I was never one to get stoned on a regular basis. I tried it a few times as a teen but the appeal never really held, I can count on one hand the number of times I smoked weed, the last time I was 16. As I took my first hit on the blunt, I proceeded to cough and hack, my eyes watered and snot ran out my nose. As Deda noted, she saw fluid pouring from every orifice of my head as I tried to recover from that first hit. Second toke went a little better, tasted like crap. Guess you cannot expect free weed to be good weed. That was basically what Deda said, my response, “if they want me to come back they should give me a sample of the good stuff, not the bad stuff!”

After we did our token toke, we came back inside and we were sitting on the sofa. Hubby came out of his office and wondered why the back door was open. Deda laughed and I swear she said “don’t answer that!” I told him what we did. I couldn’t tell if he was astonished or wanted to laugh and was holding it back. He did ask me if I felt any different. Not really, but I no longer cared that my feet were tingly from the neuropathy. So there was that. No munchies, no nap, just didn’t care that my feet were numb and tingly anymore.

The darling daughter came over and Hubby, Daughter and I headed up the street to the “other parents” house so we could see the new baby by their daughter. We only stayed a little bit as my feet were still having issues. I did get to hold the new baby and congratulated the grandparents and parents. They don’t get the same baby time we had with our grandson, as their daughter lives in Washington, so they have to travel there or daughter and son in law have to travel here. I made a jumper for the new boy, but he needs to grow into it. Darling daughter left shortly after that, as she started to not feel well and didn’t want to possibly infect me. Today both she and the Grandson are home with fevers. Flu has officially hit their house. I am worried about them, and I cannot go help them at all.

We watched the Super Bowl until it was time for Deda to head to the airport. Deda remembered the other me and opened up the package so I could pose with
myself.  The Middle Son was here by that time so we both posed with the other me. Nothing like posing with yourself to see the differences chemo has made. I can see why I don’t recognize myself when I first wake up in the morning and see my reflection in the mirror. I am puffy all over the place. I sure will be glad when chemo is over. I am really ready for it to be over. It’s like I’ve hit a wall on the chemo. I could continue until the end of my scheduled doses, and when they removed the Carboplatin, it was even easier for me to see completing all 12 infusions of phase 2. Now, I am really hoping we stop at 10. I am ready to be done and move on to the next phase of my treatment. Find out next week.

This morning was the first meeting with my new surgeon, Dr. Ali-Jones. She is adorable and provided us with more details as to what will happen when we do the surgery. She wants to target 3 to 4 weeks after the end of chemo, but we also have to coordinate with the plastic surgeon. She doesn’t want Dr. Goldberg to do surgery to make my right breast look normal and do the reduction on my left breast until a week to two weeks after we have confirmed clean margins on my oncology surgery. That makes much more sense to me than doing it all at one time as we do not know if clean margins have been obtained at the time of surgery. That doesn’t happen for 3 to 4 days after the tissue has been removed.

As for the oncology surgery, first I will go to the Breast Diagnostic Center and they will numb my breast and insert a wire into my breast that goes to the clip that was left behind when they did my biopsy. They will also inject a radioactive dye under my nipple for the sentinel node mapping. About 40 minutes after that I will be shuttled over to the hospital to start the surgery portion. Dr. Ali-Jones will remove an area around the clip that measures slightly larger than my tumor so they can try to insure clean margins obtained in one surgery. They do this as even though we can no longer see or feel my tumor, the cancer cells due one of two things during chemo, they collapse in on themselves and die or they break up into small clusters that are no longer palpable or visible. I think the second version is what happened with my aunt since she ended up with a complete mastectomy.

Dr. Ali-Jones has no problem with requesting my surgery be an overnight hospital stay so we can exercise the option on my insurance that kicks in only if overnight hospitalization happens. This will help me keep the costs down as it kicks in to cover the deductible for the surgery.

I should have an answer tomorrow what our target surgery date will be, they still have to coordinate with Dr. Goldberg for possible dates.

Tomorrow we only have to go to the lab for my weekly blood draw.

Life is waiting for the numbness and tingling to stop

Friday was grocery shopping day and house cleaning. We did the grocery shopping, and the last stop was at the local “pot” shop so I could pick up more of the 10:1 CBD oil so I will have enough to get me through the next few weeks. We went to Herbal Solutions, which is the first place we went to when I got my medical marijuana card, so I could purchase CBD oil on my own. We arrived there Friday morning and they were out of the 10:1 CBD oil, so we went to the shop where my “son from another mother” shops. Since I was new there I had to register with them, and since I had not been there before they gave me a “new patient” card and let me go back to the “shop”.

It was very busy in their shop and I had to wait a little bit for a sales person to assist me. I gave her the new patient card and told her I needed a bottle of the 10:1 CBD oil. She said it would be a moment when I pulled out my money to pay, she needed to bag it up and she disappeared in the back, so I sat back down on the bench. She came back a few minutes later with my new patient “gift” bag, which now included my bottle of CBD oil.

When we got home I opened the bag to find it contained not only my CBD oil, but a hemp wick, two blunts, a glass pipe, a bud, a lighter, a separating dish, and a bud stripping tool. And the whole bag smelled of weed! Now my house smells like weed. The rules when the kids were growing up were, you bring drugs into the house, you have to move out. Hubby keeps telling me I need to move out now since I am bringing “drugs” into the house! LOL!!! We laughed so hard most of Friday with my new “drug” paraphernalia.

After we finished putting away the groceries we ate some lunch and started cleaning the house, specifically in preparation for Deda’s arrival. I managed to clean the kitchen before the neuropathy in my hands and feet kicked into high gear. I had almost two full days with no neuropathy symptoms. I knew they would return with the most recent infusion, I just was not expecting them to be so intense. This time pressure on my fingers hurt and my feet are not just slightly numb, they are tingly numb. The neuropathy I experience in my upper lip now extends up my cheeks to my cheek bones.

I finally had to give up helping cleaning the rest of the house and let Hubby handle it. I ended up taking a two and half hour nap instead. I feel so bad that Hubby had to clean the rest of the house by himself. The nap was nice, and I was ready to go back to bed just a couple hours later. Yeah, I am still tired.

Deda arrived bright and early this morning, and we have spent a lazy day talking, and watching TV on the sofa. We talked about how I happen to have the least survivable breast cancer, (72%-77% 5 year survival rate vs. 92% – 98% 5 year survival rate of other breast cancers, depending on which study you read), and my chances for recurrence. The good news is my aunt who had this same cancer made it past the 5 year mark, which seems to be the main goal line to long term survival. I could not remember the percentages of recurrence, so we looked that up again and found the chance of recurrence is 34%+ by 2 1/2 years. It drops considerably at 5 years and trails down to almost nothing after that. We talked about my chemo and what answer do I want after next week’s treatment. I think I am ready for chemo to end. As much as it scares me to end chemo, I think next week should be my last one. I am tired of not feeling well, I am tired of the neuropathy, and I am tired of all the puffiness. I’m tired of not being able to taste most foods, and having anything dairy taste absolutely awful right now. I am tired of being tired. I am tired of my digestive tract not working correctly, and I am tired of being afraid to leave the house lest I pick up a bug somewhere and make myself really sick.

This scares me too, as I don’t know how to fight cancer without taking something to kill the cancer. How do I transition from chemo to faith that surgery and radiation will be the end of this? There is a class that is offered through the Cancer Support Community for those who have finished all treatment and are ready to transition to survivor from patient. I need this class. I am already having anxiety about stopping chemo, which I know in the long run is going to be better for my body overall with all the side effects I am experiencing now. If I was only tired and dealing with the easy side effects like the taste, and digestion, I wouldn’t think about stopping at 10 treatments in phase 2. The Neuropathy returning worse after infusion kind of scares me more than stopping chemo. The neuropathy could become permanent.

Deda listened to my concerns and agreed with me that taking the class to transition to survivor would probably be a great idea. She asked me since I had been going for so long now, was I one of the most senior in the group. I had to tell her no, there are still more people there that have gone through all of this already. Most people continue to attend the support group until 15 to 18 months after the end of treatment. That is the end of all treatment, whether it’s chemo, surgery or radiation, any or all of these.

We went to dinner early, since I am still dealing with the major effects to my digestive system after chemo infusion. The first few days are the worst as food just doesn’t go down normally.  It takes a long time for my food to digest the first few days so I suffer from GERD even worse than I normally experience.  It makes it hard to get to sleep when your food keeps coming up and you choke on it.

It may be another early night, as I only had about a 30 minute nap today.

Life is starting to think about transitions

Yesterday was Chemo cycle #9 in phase 2, the third one with Taxol only.  As I noted on Monday, my Neuropathy has improved, to the point today I can barely feel it in my fingers and do not feel it all in my feet or my upper lip.  But I am tired today.

I have noticed I tire out more easily now, even though my overall energy level is greatly improved since we stopped the Carboplatin.  I took my time getting everything ready for yesterday’s chemo infusion.  I decided I would not watch Netflix or TV while in treatment yesterday, I decided to read instead.  I normally knit and watch “TV”, but I didn’t have an active project I wanted to take with me and I am not ready to start a new project, as I have two I am currently working on.  Hence, no “TV” to watch while I knit.

Despite going later in the day for my blood work on Tuesday, rather than first thing in the morning, my ANC levels were still very low on Tuesdays blood work results, so I had to go through the finger stick again and wait for the results to determine if I could go through with yesterday’s infusion.  As usual, my ANC went from 0.4 to 1.5 in 24 hours.  I also asked about my liver enzymes since my GP is so concerned about them she has yet to authorize a refill of my Synthroid, which I find very frustrating since I need that so bad things don’t happen as I have NO thyroid due to cancer there almost 20 years ago.  Has she followed up with Cancer Care, no, but she does ask me why my liver enzymes are out of whack.  I’ve told her twice now that my liver does not like chemo, Cancer Care is watching my enzymes closely, and so far they have gone up and down cyclically with each treatment, just like my ANC now.  Need to remember to follow up with her in the morning so I can once again get my Synthroid Rx renewed.

Infusion yesterday went off without a hitch, and all the nurses liked my temporary tattoo yesterday.  They all learned something new.

We headed straight home after my infusion and I made sure I ate an early dinner before my stomach started to rebel from the chemo.  I don’t get sick, it just slows down for a while and nothing seems to go down for a loooong time.  Since we stopped the Carboplatin it has improved, but I still suffer for a few days with extra slow digestion making eating difficult.  It doesn’t help that my taste buds are totally out of whack and I cannot taste most foods now.  Chocolate is still somewhat OK, all dairy tastes horrid, and I need something strong in order to have any sense of flavor.  Otherwise it all tastes like cardboard.

I was in bed by 9 PM, but had a hard time staying asleep.  Hot flashes and nightmares kept waking me what felt like minutes after I’d fall asleep.  The last nightmare was about 1 AM when I dreamt that Robert had collapsed in the doorway to his office and could not get up he was in so much pain.  I woke up but his office light was off and he was in the bathroom.  After that I slept until after 9 AM.  Today I had an acupuncture treatment and I fell asleep while meditating.  On the way home I suddenly felt very tired, so as soon as we got home I went and lay down and slept for over 2 hours.

Since Hubby fed the cat this morning for me, I fed him tonight.  I fell asleep out there while feeding the cat.  This has not happened in several weeks.  This is how the extreme tired started with the Taxol/Carboplatin chemo mix.  Now I am a bit worried that I won’t last for the last two infusions.  I have also noticed a rash that is starting to show up on both my hands between my thumbs and my forefinger on the top of my hands.  Heidi has a chemo burn on her hands from the Taxol, and I am wondering if this rash I am seeing is the start of the same thing.  Another thing to watch over the next two weeks before my next follow up with Dr. Sikaria.

In the mail today I received a lovely card from an aunt in Arizona!  She sent me a hug in the mail.  Thank you Aunt S!  I was so touched and it was perfect timing on the card as it really picked me up from feeling low about how tired I am today.

Hopefully tomorrow – Friday, will go much better without as much napping.  And I have another visit from Deda to look forward to this weekend.  She arrives Saturday morning.

Life is watching all my “symptoms”

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