Beingpositive with BC

 April - 2nd year first mamo

April - 2nd mamo

May 1- Biopsy

May 5 - Biopsy result confirming cancer

May 16 - first appointment with surgical oncologist- Dr. Abidi. She explained it was stage 2A and suggested lumpectpmy as the lump, based on ultrasound was around 3cm. She also wanted to get an MRI to see the extent. It was both inside and outside the duct. I was estrogen +ve cancer. She also encouraged to continue with the summer trip.

Before the trip-MRI was done, on May 29th, doctor called and told us the MRI report shows more than 3 cm but would meet with us after our trip, June 27th.  

The preop is scheuled for July 3rd and surgery  with lumpectomy on Juny 7th. 

July 3rd- during preop doctor recommended to do Mastectomy instead as MRI showed that the mass was around 7cm. This was on the cusp of lumpectomy/ mastectomy. But she would recommend mastectomy if its more than 30% breast size. 

Jul 13- first appointment with Plastic surgeon. He showed us what the options were - FLAP/ DIEP/ implants. We were going towards DIEP - tummy tuck and breast reconstruction based on the pros. He originally suggested there would 2 surgeries 6 hours each. One for mastectomy and putting a expandor and then one for the reconstruction. 

Due to late availability of both doctors for the surgery, they decided to do one surgery togther and scheduled it for aug 30th.  

Aug 29th- shot to input seed

Aug 30th - surgery from 7.30 - 2.00 

Sep 1- home by 2pm.  Had 3 JP/ drains. Couldnt move hands/ Trex arms/ need help for everything. 

Sep 6th - removed 2 JP's. Can do a lot more on my own. They recommended walking, but did only walks inside home. Need to bend a little, so back hurt. Each day gets better and getting stronger. 

Sep 11th - post op with surgical oncologist- she confirmed that the tumor waa 3.5 cm and it was stage 11 BC. She said we could have chemo and or pills and will need to wait for recommendations from medical oncologist. 

Sep 11 th week - 2 times PT and OT. 

Sep 13th- drains out!! Can begin to walk straighter, as much possible, slowly.. appointment in two weeks to check surgery area. Doctor advised, elbows close to ur body for 4 weeks post surgery( left side). No using pectoral muscles. 

Sep 17- left breast still very tender, cant lie down, stand up, sit for long periods.. have to walk every couple of hours, even at night. Burning feeling in left breadt has reduced but still there. Feels like memory foam. Half the left arm was numb for the first two weeks ( upto elbow), slowly better after PT. 

Sep 21. - met with Dr. Milli Arora, medical oncologist. She explained what are thr next steps - potential chemo , about sessions in 3 months or just the endrocrine medicine. Chemo might be a possibility depending on the test result which would take 2.5 weeks. The reason, my ki67 based on the Biopsy was 1% l, however the result from the mastectomy was a grade higher and that didntmake sense for the doctor. Hence further testing. April - 2nd year first mamo

April - 2nd mamo

May 1- Biopsy

May 5 - Biopsy result confirming cancer

May 16 - first appointment with surgical oncologist- Dr. Abidi. She explained it was stage 2A and suggested lumpectpmy as the lump, based on ultrasound was around 3cm. She also wanted to get an MRI to see the extent. It was both inside and outside the duct. I was estrogen +ve cancer. She also encouraged to continue with the summer trip.

Before the trip-MRI was done, on May 29th, doctor called and told us the MRI report shows more than 3 cm but would meet with us after our trip, June 27th.  

The preop is scheuled for July 3rd and surgery  with lumpectomy on Juny 7th. 

July 3rd- during preop doctor recommended to do Mastectomy instead as MRI showed that the mass was around 7cm. This was on the cusp of lumpectomy/ mastectomy. But she would recommend mastectomy if its more than 30% breast size. 

Jul 13- first appointment with Plastic surgeon. He showed us what the options were - FLAP/ DIEP/ implants. We were going towards DIEP - tummy tuck and breast reconstruction based on the pros. He originally suggested there would 2 surgeries 6 hours each. One for mastectomy and putting a expandor and then one for the reconstruction. 

Due to late availability of both doctors for the surgery, they decided to do one surgery togther and scheduled it for aug 30th.  

Aug 29th- shot to input seed

Aug 30th - surgery from 7.30 - 2.00 

Sep 1- home by 2pm.  Had 3 JP/ drains. Couldnt move hands/ Trex arms/ need help for everything. 

Sep 6th - removed 2 JP's. Can do a lot more on my own. They recommended walking, but did only walks inside home. Need to bend a little, so back hurt. Each day gets better and getting stronger. 

Sep 11th - post op with surgical oncologist- she confirmed that the tumor waa 3.5 cm and it was stage 11 BC. She said we could have chemo and or pills and will need to wait for recommendations from medical oncologist. 

Sep 11 th week - 2 times PT and OT. 

Sep 13th- drains out!! Can begin to walk straighter, as much possible, slowly.. appointment in two weeks to check surgery area. Doctor advised, elbows close to ur body for 4 weeks post surgery( left side). No using pectoral muscles. 

Sep 17- left breast still very tender, cant lie down, stand up, sit for long periods.. have to walk every couple of hours, even at night. Burning feeling in left breadt has reduced but still there. Feels like memory foam. Half the left arm was numb for the first two weeks ( upto elbow), slowly better after PT. 

Sep 21. - met with Dr. Milli Arora, medical oncologist. She explained what are thr next steps - potential chemo , about 4 sessions in 3 months or just the endrocrine medicine. Chemo might be a possibility depending on the test result which would take 2.5 weeks. The reason, my ki67 based on the Biopsy was 1% l, however the result from the mastectomy was a grade higher and that didnt make sense for the doctor. Hence further testing. 

Week of Sep 21- Oct 2  the wound was healing as expected up until now but the PA at the plastic advised to call only if I had a fever or looks of an infection. After our visit at the plastic surgeon, they recommended us to see in two weeks. My bad, I should have continued with a weekly. Knowledge is always hindsight. The next week, I started to see an deep opening in my abdomen and it slowly started to gap further. When we called the emergency, they advised us to send pictures and as long as there is no infection,I should be good. I'm sure the doctors wou,d have seen worse but for us, it was the first and nthe wound becoming bigger didn't help. We both forgot about the chemo and everything else that could happen and were just focused on the wound. It wasn't hurting or anything, I am still numb. Left breast was numb, not really using my left arm much, thank goodness I'm right handed. And my whole abdomen is numb. So I don't know if it didn't hurt because of that or it just didn't. We slowly crept through the week with the doctors suggesting just wet dressing and made to Oct 2 appointment. The PA were concerned and ordered a wound vac. This would come to the clinic in the next two weeks. I'm feeling better each day, stronger for sure each day. 

Oct 12- as things began to progress well with the wound, we got a call from the oncologist that my test results were in and she just gave the test result number. However wanted to discuss the next steps in person. I assumed that it wad good news and no chemo. We got an in person appointment the following Tuesday. 

Oct 17- the oncologist explained the result and advised for 4 sessions of chemo with docetaxel and cyclophosphamide. She explained the side effects and why she advised for chemo. It was a lot of information, our visits have always been flooded with information. We tried to make sense of it. Since the surgery, I have had tough time sleeping continously. I can just stare st something for hours and not sleep. When my pcp offered something for sleep earlier, I refused. My stupidity. When the information about chemo came up, I couldn't sleep. I was tired but just can't go - I tried a whole lot of things, slokas, tea, read a book. Nothing. Later, the next, I picked up courage and shamelessly asked my pcp for sleeping pill. It took a week to come to terms, talking with a friend whose sister went through chemo, helped with me with reality check. I cried, but then I was to coming to terms eithit, it still scares me a lot.  I think the vulnerability of losing hair is hardest for me. Maybe because that was the first thing that my kids were afraid of when we spoke about my diagnosis. I started watching videos and found that I couldn't find any Indian women who shared their journey and I plan to do it as much as I can. Lets see how far i get. 

Oct 23 - Had a follow up appointment with the Plastic Surgeon. Wound is healing great, continue with the same wound bandage and follow up in two weeks. 

Oct 31 - Almost the whole day at the hospital for CT scan and Bone scan. This one was much easier than MRI as they scan with clothes on ;). 

Nov 1- The tests of the scan came back great - no evidence of cancer in either of the scans. Yay!

This week, I can see a great improvement in my posture as well. I am walking almost normal with straight back which feels great. Confirmed with medical oncologist on the Chemo treatment and she said everything will be scheduled. 

Nov 6 - Appointment with the Medical oncologist nurse and she gave us a binder and walked through the Chemo procedure. 

Nov 8th- Scheduled Chemo - begining Nov 18. Then Dec 8th,28 and then Jan 18th. While being nervous about chemo, its side effects. Trying to be as positive as I can. Chanting my slokas/ affirmations as much as I can. Enrolled in a meditation retreat to learn meditation for the weekend, right in time for Chemo. I am planned to focus on my nutrition and mental stability as I believe and seen this has great impact than anything else. I have signed up with Luke's Cancer care for one month and meditation. 

Nov 16th- My first chemo appointment, our appointment was at 8.30 and they said it would go about 4 hours. We werent advised to take our blood count before as I was young and healthy. However at the appointment, they wouldnt go with Chemo until the blood count was completed. We had to wait for an hour for the blood test to be completed. The nurses had some trouble finding veins as mine were small and then used an ultrasound to find one :). Usually for all my blood tests, they would chose veins on our inner elbow, however for Chemo, they wont use those as they are protecting since chemo could harden the veins. I was very nervous when I went it, however looking at the other patients - much older than me, come in and leave by themselves, gave me so much boost. They seemed to radiate so much strength and that made me feel I can do it myself. When they started the chemo at around 11, i got an allergic reaction - I could just feel my face stretch and I guess I looked so flushed. The nurses immediately stopped the medication and then gave me Benadryl for allergic reaction. This is one of the most common side effect when the chemo drug is administered first. They waited for 30 min after the reaction and then started the infusion at around 1140, however slow - they did about 25% for 30 min, then increase to 50% of dosage for 15 min, then 75% and then 100% for the remainder. It took them about 130. Then the second chemo drug was administered which took another 1 hour. I was woozy and little tired but was ok. I didnt want to eat much, so just had Idlis and some fruits. I had Kanji before the chemo. We came home around 330. I couldnt sleep at night much due to the steroids, apparently side effect is Insomnia. Ispite of taking the antianxiety I couldnt sleep much that night. The anti nausea medicine seemed to help. 

Nov17/18 - Didnt want to upset my stomach, so had smoothie for breakfast adn then rasam rice for lunch and then Idli again for dinner. Keeping it very simple so I dont mess with my stomach. Feeling tired but not unmanageble - not as bad as my PMS, lol. My hands seemed to be very itchy, and I tried to apply oil/ moisturizer throughout. My mouth is feeling dry/ weird - but the oil pulling at night seemed to help. I kind of have scalloped tongue. 

Nov19 - Slept a lot better today, going to keep it light with rasam/ milagu kuzhambu and rice for lunch. Have to increase my intake of veggies to improve my bowel movements. The most scary thing for me is losing my hair, while I did come to terms to it and even got a wig, but still the thought of it makes it so vulnerable. I almost want to just shave off instead of waiting for it to happen. I am trying to focus on healing part and ignore this, but this is harder than I thought. My mouth still is more fuzzy today as there are steroids today to combat the side effects. Have to see if it gets better or worse :)

Nov27th - each passing day felt better and better - energy wise.  Had emotional moments where I was frustrated craving to eat but couldnt taste anything and thus not wanting to eat. I really wanted to cry out loud, but couldnt either. Didnt feel like eating but ate at alloted times to just give me energy. I started to cook a bit and Nanda helped a lot. It was just being tired after chemo, like no energy and I didnt realise what it was until I was all better on Sunday, which was 10 days after chemo. I almost felt normal when I woke up. Then I got my period, on time - I was hoping I would the 70% women who dont get the period. My luck, I came to acceptance that maybe this is good being normal. Hoping that this would continue to be normal. Then had an emotional morning when the wound looked different than last week, It was almost like i couldnt catch a break. Called the hotline and also visited the PS clinic, however no walkins allowed but the nurse was gracious enough to talk to the PA and give me advise. I got a follow up appointment on Wed. Amazingly no great hairfall till now, one yay! Got mouth sores since Friday, started applying honey. lets see how it goes. 

Nov 29th - My hair started to fall in bunches today, no feel of hair falling when I run my fingers through, hair just falls in lumps. When I shower, I can see the hairfall down the drain.It was hard to lose my hair, but I had bigger fish to fry, appointment with the Plastic surgeon PA to look at the wound. The PA didnt say much except that the wound didnt look infected and wanted me to follow the same routine with the zero form. She said she would let Dr. Salibian know about the progress/regress. Dr. Salibian called us when we were driving back and was baffled at why my wound regressed. He explained that he would connect with Dr. Arora and decide if we need to pause Chemo. I didnt have any questions for PS, as I was processing the potential delay in Chemo. I was really upset with that as I just wanted to be done. My patience seems to be wearing off, not sure if Chemo was giving me mood swings. But I can totally see/feel my mood changes. 

Dec 1- the Plastic surgeon called and told us he would fit a wound vac to quicken the healing process which we will go and get fitted on Monday. We have appointments every day of the next week - 3 times for wound vac and twice for chemo. 

Dec2 - Within just two days, I can totally see my hair just coming off my scalp. It came more in bunches and already scalp looked very thin. I wanted to shave off but Nanda insisted not anyone can see it and to keep it as long. I just want to be done as the hair was falling off everywhere. 

Dec 3 - Most of the hair just came off in the morning, I didnt want to shave off but was just going to cut off the longer strands. As I did it, tears rolled and it was very hard to see myself in the mirror with such scanty hair. I put on the head scarf , both for me to personally not see my bare head and for kids not to see my like that. Nikhil came and asked for why I lose my hair and If I would be sicker if I lost hair. Im happy he came and asked :). 

Dec 4 - My wound looked much better than what it did on Wednesday, last week. We went in to get the wound vac fitted today to the PS. Dr. Salibian also stopped by to visit me! I guess the wound was scared of him, and he confirmed I didnt need a wound vac! I was relieved as I wasnt sure how it would be to have a crossbody all the time (Atleast thats what they said I needed). We decided to proceed with the chemo as there was no sign of infection. We also decided that if the wound regressed back after the chemo, we would consider holding off the 3rd session if needed. But Dr. Salibian also said that if the wound looks as is and no infection its good to go and no need to worry, while its just annoying. I was ok with that. 

Dec 7- All set for the 2nd session and was only thinking of being half way done at the end of today! They gave me the steroids, anti nausea and tried to get veins but had to use an ultra sound again :) I  also got the Benedryl before the chemo was to begin. I could totally feel the wooziness and that was the worst part for me. They had apparently started 50% and as soon as I got 1.2 ml i could feel it, my heart raced and my face began to swell. They stopped the medicine and gave me another shot of Benedryl. We waited for Dr. Arora message for a while. It was decided that Docetaxil isnt working for my body and they have to switch another drug. This happens occasionally, i seem to be ticking off all the lower % of things happening :). We came home, I think I accepted it quickly that my chemo wasnt happened, while dissapointed that the whole process would be longer. I was still tired and it took me until the next day to get the Benedryl and its side effects. 

Dec 11 - Waiting for information from the doctor on the drug and scheduling. 

Dec 18 - Appointment with the plastic surgeon went well. No news on the scheduling for the Chemo, Nanda kept calling adn talking with the insurance and then the Oncology nurse to see if there some agreement. 

Dec 19 - On our way to meet with the Oncologist, we finally got information that they could schedule my chemo. We scheduled for first available, on Friday 22nd. Met with the oncologist, she told us, she tried everything and was shocked to see why it took long with the insurance.  She told us this drug will not have nausea as a side effect as much as the first one. 

Dec 22 - I was  relieved that Chemo was finally scheduled but very nervous that the I wouldnt have the allergic reaction. The nurse Marly and Oliver were amazing, this was north side infusion center. The nurse knew all my background and told me not be nervous. My BP was on the higher side as I was nervous. They gave bendryl in tablet form and this was so much better than the IV. It might be less woozy.  I almost had tears in my eyes when they started the chemo, but the nurse stayed with me throughout the infusion. Paclitaxel was only for 30 min, while Docetaxel was for an hour. We came back home at around 1230. The nurse suggested not to have the steroids or nausea medicine since they would give me all the needed for day before the chemo started. 

Dec 23- Dec 29 : I slept the first night decently, I was not feeling that tired or anything for the next days too. I assumed and thought this was better than the other drug. (Nanda thought my body was used to the chemo in addition to the change of drug). Monday, my body was so tired and I just wanted something heavy on my legs all the time. I couldnt walk much and getting up was a struggle. I also thought that I was PMSing since I was due for my periods. But it felt so much stronger and lasted for the whole day. Nanda wanted me to just take Tylenol for the night which I took. The day after was a little better but still was bad, so I ruled out PMS since it wouldnt be this bad. We called in the doctor and they gave a muscle relaxant. each day gets better than the day prior but still tired. Walking around the house a little more from Thursday. Lot of acne/bumps in face and few in the body. Was constipated on and off - things that helped - coconut water with chia seeds, lots of water and castor oil at night. Thursday and Friday, I could feel my throat was burning after eating, so drank soda after lunch. Oil pulling has been good so far for mouth ulcer, but also did salt water rinse the first few days. The wound seemed to have increased in size, it was almost done just before the chemo. But the regression isnt as bad as it was first time, so I am ok with it. Hoping it wont regress much more, fingers crossed. 

 

Jan 5 - I was feeling almost normal. Beginning Jan 7 - i walked a little bit around the house as well as outside to get steps. Slowly becoming stronger. 

Jan 12 - 3rd Chemo sessions. While I know that this medication wont have any allergic reactions, I was still nervous. The appointment was at 8.00 and by the time they finished with peptides, anti nausea medicines and getting a vein it was almost 925 when they started Abraxane. I could hear my heartbeat right before they started the medication. I was listening to Luke's meditation/ slokas and tried to calm but still I was very nervous. It took a solid 10-15 min after the medication to realize I wont have a reaction. My heartbeat slowly came down :). I could feel tired this time during the time when they infused the medication. Food tasted good, however, it had a soapy after taste, whatever I had:D. My breasts seemed tender. I tried to walk a little bit after eating so I can sleep better. I felt I ate a lot more than the previous times - i had an appetite, which is good. 

Jan 13- 15 - i didnt take any steroids/ anti nausea after the chemo session and I felt a bit more tired this time even during chemo. But as usual the second day was ok. Very bloated and constipated for the second day - i think applying castor oil, drinking coconut water helps a lot. Sunday was Pongal, I did a little bit of cooking and it was tiresome. Afternoon I started to feel my legs heavy and started to take the muscle relaxant at night from Sunday - Thursday. My leg aches were bad, not as bad as previous chemo as this time I took the muscle relaxant. I was in bed for most of the week. Thursday (Jan 18th ) got way better, aches had reduced but legs were still wobbly. Each day gets better. 

Feb2 - this was my last session of chemo. I week prior, I didnt know what to feel - happy/excited that my last session is coming up. That day I was devoid of emotions. The nurses gave me a certificate of completion, lol and wished that they would never see me. Im very grateful for those nurses, especially the two who assisted during the 2nd session. They were the kindest! Session went smoothly and I came home. It was tiring but not bad for the first two days, this time too I didnt take steroids/ anti nausea. Sunday, my body started to ache. I did start taking the muscle relaxant earlier this time. Not sure it helped, there was a lot muscle and bone pain. This lasted for 4 days. The following week, I am usually tired, but this week, I pulled myself and worked on cleaning the pantry and all before I started full time. It was tiring but i pulled through it and felt accomplished. As i pulled through, I realized I didnt have to lay down as I usually do and thought I recovered better. Not sure if it was pure grit or that my final session was done. I wasnt excited that it was done, but calm that it was done. I kept repeating it to myself that I did a great job with chemo and surgery and it was a big deal. I didnt want to dismiss what happened. 

March 14 - It had been 6 weeks since Chemo - my head is still bald! no sprouts even. I am walking 4 miles most of the days for the past two weeks. I keep reminding not to push myself but to make sure I have consistency. Met with Dr. Arora today, she gave us options for complete menopausal treatment or slowing menopausal treatment. We are going to begin with Tamoxifel - which starts the menopause but reduces the hormones (estrogen). I think I am already having hot flashes a bit - not sure, if the medicine would increase it or remain the same. 

The past year makes me want to do more for cancer patients and I am hoping to do it in my own small way. I dont know how or what, lets see.