Author: KimJHA

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

 

I’m still dealing with the body aches and exhaustion that now comes with chemo.  We went and purchased a separate heating pad for me today since I am wanting to use the one we have almost constantly while dealing with the body aches.  Today we also added upset tummy again to my ails.  Hubby thinks it is the Chinese food we order from a specific restaurant.  I wanted Hot and Sour soup last night, and I have not been sick since I started using CBD oil.  We order the soup from one specific restaurant, and today I was puking my guts into the bathroom trash can again while already using the toilet.  No more Hot and Sour soup for me…..

I am so tired of my brain not working, my body not working, my finger tips and feet being numb.  Not being able to taste most of what I eat.  I am so tired.  6 weeks seems like such a long time to keep going.

Hubby has been a such a help and a saint.  He keeps reminding me this is temporary, and I can do this.  I just want to be done already.  Can this please be done…

Life is endurance

Last night I made a pot of champ (mashed potatoes with green onions) and threw in some bacon for protein.  I figured I’d eat some with a bit of sauerkraut, as I’ve always loved mashed potatoes with sauerkraut.  By the time I was done making it, I was no longer hungry.  Champ went into the fridge to wait for today.  Maybe I’ll be hungry today.

As we were sitting watching TV I noticed a new sore in my mouth, this one on the inside of my bottom lip.  At first I thought, “When did I bit my lip?”, then I realized no, I didn’t bite my lip, it’s a new sore.  Oh the joys.

Hubby wanted to watch the Georgia/Alabama game last night so we watched.  It’s not very often he asks to watch football, even if it was a college ball game.  Georgia was up at the half and I was feeling very tired so went to bed.  I woke up when hubby came to bed and asked him who won, Crimson Tide came back after the half, caught up, stayed tied and won in OT.  He’s so sad today.  He pulled out his black ‘Dawgs cap and will be wearing that today as he is in mourning.  And to think this all started with a 40th birthday gift of a Bulldogs cap from a friend.

I have to go get my blood work done this morning, and then I have an appointment with my Primary Care, just to check in and keep my prescription for Paxil up to date.  It’s raining here today, so we need to make sure we give ourselves enough time to get to both places in time.

I am still feeling just the slightest ache across my shoulder blades, just want go away completely.  I’ll have to ask the nurses about this tomorrow when I go in for my infusion.

Life is trying to eat

 

Now that I am awake and can think mostly straight again, I am back to post. For the first time since starting chemo I fell asleep upon our return home after an infusion. I went downhill from there, into sleep and brain fritz.

I did take the time, exhausting as it was, to get a medical marijuana card so I can purchase my own CBD oil. That was an ordeal considering how bone-tired I was during this odyssey to get me the CBD oil I needed that is controlling the nausea. Now if I could get it to control the aches that come on the day after infusion now and last for 4 days.

This time I did not resist the exhaustion or inability to focus and just rolled with it. I was not as frustrated, but I was still bored as I could not concentrate on anything long enough to distract myself when I was awake. I did manage to take in enough of the playoff games this weekend to understand who won, who lost and the just of the games.

We will try this again this week, see if I can stay on top of everything and keep posting while going through this.

To recap, exhaustion, aches and inability to focus. Today is a bit better, but still very tired.

Tomorrow is labs and a follow up with my Primary Care Physician, then Wednesday is my infusion day.
Chemo is kicking my rear this time.

Life is getting through the next seven weeks

I am still tired, but not as much. And my brain is functioning a little better. I know tomorrow I will feel great as I start taking the preparatory steroids tonight for tomorrow’s infusion. I know I will feel really good until about Thursday afternoon and then it will be the sleeping, brain scrambled frustrating hell I went through last week. I still have the sore on my tongue and I still cannot taste food correctly. I am not getting any respite on that front. It’s really hard to stay motivated to go to chemo. At least the CBD oil has the nausea under control. So much for Taxol/Carboplatin being less nauseating than Adriamycin/Cyclophosohamide cocktail.

We went early to the lab, and despite their computers being down, was still in and out of there fairly quickly. From there we stopped at Trader Joe’s and Albertson’s to do the grocery shopping. I wanted to pick up the ingredients to make a big pot of Chicken Noodle soup. TJ’s didn’t have any bone in, skin on Chicken Thighs so I figured I would just have to get that at Albertson’s.

When we got to Albertson’s they didn’t have any either. I was frustrated and about to have a meltdown in the store, but Hubby was able to talk me off the ledge, and helped me with an alternative. The reason for the bone in/skin on is to get some of the fats, gelatinous connective tissues and bone marrow from the chicken as all of these are good nutrients for me, without having to go through the process of trying to deal with a whole chicken. I don’t have the patience to deal with that. When I explained to him why I needed the bone in kind he pointed out that I will basically be braising the chicken the meat will fall right off the bones so use chicken legs and add some boneless thighs to get the meat you want. Use the meat off the legs that “falls” off and don’t worry about the rest.
A little more work for me, but a good solution. Change is very difficult for me to deal with now. I have no ability to think outside the box and no patience to deal with alternatives to what I have set my mind on as my solution. While I am dealing with changes I find it frustrating that I cannot turn my mind to the alternative which just makes the melt down even harder to deal with. I know this is happening and feel powerless to stop the process as hard as I try when it is happening. I feel like a petulant child and want to change my affect but it is so difficult. Part of my brain is yelling at me to stop the words coming out of my mouth, stop the pouting I know is happening. Think of a solution. Tears threatened yesterday, and that part of my brain was “no, you will not cry over damn chicken thighs!” I am grateful for my husband who had the patience to talk me through this stumbling block and provide a solution that is good even though at the time my brain was not willing to accept it as a great solution, I could only grudgingly accept the solution even though that small part of my brain was cheering. It just can’t break through the controlling part of my brain that rejects any and all changes.

After dealing with my near melt down in the meat aisle we both forgot about getting the baby food for the Toothless Wonder Cat, and we checked out as if all was right in the world. We headed home and put all the groceries away and I ate a small bite and drank some more Lemon/Honey tea before we headed out to my acupuncture appointment.

I explained to Homa everything that has been happening since my last appointment, and how the neuropathy never went away, how I could not hold the smaller needles used with the finer yarns, I kept dropping the needles and stitches, on top of not being able to keep the pattern in my brain and losing where I was on the physical pattern sheet. I told her about my inability to deal with change, my near melt down, our decision to not let me drive anymore, all of it. She said I need to give myself permission to heal, and she added more treatment points for blood flow to my brain and the neuropathy in my hands and feet. For the mouth sore her only suggestion was to add gargling with salt water to help keep my mouth clean. Oh yea, I forgot about gargling with salt water.

I still had a very hard time meditating while I was in treatment, my mind kept wandering. Not as bad as the previous days, but enough that I would realize I was “flitting” and pull myself back to the meditation at hand. As usual, I started with requesting blessings for friends, family, my doctors, etc. Then I gave my thanks for all my blessings. I truly am blessed! I am so grateful for my husband and his patience with me during my two year old phase right now. I am thankful for my children who are rolling with all this and taking over when they need to, and being supportive when they are not needed in the house. My family for all the messages of support and love, and taking the time to come visit with me when they can since I cannot get to them right now. For all my friends who are praying for me and sending me good thoughts and messages of encouragement. My boss who checks in on my every week to see how I am doing to provide words of encouragement. For those who know people who know me who are praying for me just because the person they know has asked. I have so much support and love pouring in, and here I act like a spoiled two year old. I am trying so hard to be “normal”. I need to remember how blessed I am more often, like every morning. Maybe this will help me in my brain acting like that two year old.

When I was done at Acupuncturist we headed to Costco to pick up my Rx. One still has not been reauthorized by my GP, but the other was processed, just not filled. They told me about 20 to 25 minutes. I went and sat in the “waiting” area. 45 minutes later I was still waiting. I got up to ask and one of the cashiers told me I needed to stand in line. I already stood in line! I was told 25 minutes, I’ve now been waiting 45. Finally one of the three cashiers took my info and looked up my Rx to see if it was ready yet. Yup, waiting on the shelf for someone to pick it up and call me…. Again, I felt the tears threatening. WTF? Blew my nose and picked up my Rx and headed out to hubby who was waiting outside. He had just texted me to find out what the holdup was, timing.

That was when we realized we never picked up the baby food. So we headed back to Albertson’s. The Toothless Wonder Cat was waiting for us as I forgot to feed him when we got home from the grocery store. Hubby went out and fed him while I made myself some food as I had only snacked in the morning. The trip to Costco took so much longer than we anticipated.

I started a new easy knitting project that I could take with me to Support Group and took in the hats, scarf and cowl I finished from the yarn cousin “P” sent. I still have two more hanks of yarn to work with, but I just cannot handle the needles needed to work with that yarn, so they will have to wait until I can knit with small needles again. I am not even sure I could crochet with yarn that fine. I guess I can try and see what happens.

We headed to group and went to our separate meeting rooms upon our arrival. One of the ladies in my group loved the wristlets and wanted to pay for them, so I told her to make a donation to Dr. Susan Loves Army of Women instead. She did right then and there. One of the other gals in my group took one of the hats and the cowl for her sister that is battling breast cancer. Another gal took the beaded scarf, it looked beautiful on her! I left the rest for anyone who needs them.

I did tell my group about all the issues I am now experiencing with this phase of chemo. One of the gals who just finished the last of her radiation, but also went through the same chemo regime I am on said she threatened to quit chemo every week. She totally understood my frustration and told me it will be over much more quickly than it feels right now. She said just keep venting here and you will get through this. It sucks and she understood the frustration of not being able to control my brain, etc. She said threatening to quit every week actually helped her to stay the course. So that is my plan, I quit chemo after this week!

Life is venting and threatening to quit (reverse psychology at its finest)