HELP

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HELP

by AJJSM639 on Fri Nov 22, 2019 01:42 PM

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I have a 14 month baby girl (1 year 2 month old) who is breast fed. She eats solid foods but is strictly breast fed from the time she gets home from daycare to the time she goes to bed (and all throughout the night basically). Keep this info in mind please. Background: When I was pregnant, I had issues my OB said “it’s probably hemorrhoids, which is common during pregnancy”. Months later, that same issue seemed worse. Got referred to a specialty clinic and the doctor decided to do an MRI (w/o contrast) because she did not believe what I was experiencing was “hemorrhoids “. MRI scan showed a 4cm mass in my rectum. She wanted to a Colonoscopy/biopsy but wanted to wait until after I recovered from childbirth. Months after I gave birth, the procedure was done. Results: mass is pre-cancerous. A few more months after that, I was scheduled for a colonoscopy/Anoscopy/Biopsy. Results: still pre-cancerous. Wants to remove the tumor (what she was calling it). Refers me to another doctor. I meet with the doctor and he wants to see whatever the first doctor saw during my colonoscopies so that he can have a better understanding of what is going on so he can make a decision about what to do with the tumor. Finally, the tumor is removed and sent to a pathologist. A few weeks later I go back to the clinic for my follow up and I find out that the tumor was not pre-cancerous. It was cancer. Now, I’m getting referred to an oncologist. I meetbthe oncologist and he confirms I have Stage I T2 Rectal Cancer. Schedules blood work and an MRI. He also refers me to a radiation oncologist. Met with the radiation oncologist and we go through my entire journey from the beginning up until that day. Schedules me for a CT scan. I complete the MRI and fours days later I complete the CT scan. A week later I am back at the radiation clinic to complete a CT sim and get marked (tattooed markings on my body so that I align up in the exact same spot for the radiation machine). The next day, I start radiation. On the 5th day of radiation, I go back and meet the oncologist I was first referred to. He tells me that based upon the MRI imaging, the cancer is now Stage Ill because it is not attacking my lymph nodes. He then prescribes me the anti-cancer chemotherapy drug “Capecitabine” and sends me to complete some blood work. That was yesterday the 21st of November. Today, I find out that my blood work “is good” and to start taking my meds (like today). I haven’t. I can’t breastfeed and I have limited physical interaction with people who might get into contact with my bodily fluids; like sweating and kissing my kids. Here is where I need some help and guidance: How do I just stop breastfeeding? My daughter has never been on the bottle (tried so many times and she refuses) and refuses formula, whole milk, 2% milk, 1% milk, soy milk, almond milk, chocolate milk, strawberry milk, milk in sippy cup, or milk in a cup with and without a straw. I was told that When any chemondrug, others are to not come into contact with my meds or me if there is a chance that my fluids could get on them. I’d have to keep my dirty laundry in a sealed bag, separated from everyone’s laundry. I co-sleep (because of breastfeeding). I have hot flashes at night and for some reason, my thighs, legs, head, and neck sweat. My daughter refuses to sleep in a crib/playpen and if she does, it’s only for 1-2 hours (most of the time). How can I NOT kiss my kids? What do I do. Someone, anyone...please help me. I am going to start taking my chemo pills on Monday (this coming Monday, which is 3 days away). Thanks in advance!

RE: HELP

by ToddlerFather on Sun Nov 24, 2019 01:28 AM

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On Nov 22, 2019 1:42 PM AJJSM639 wrote:

I have a 14 month baby girl (1 year 2 month old) who is breast fed. She eats solid foods but is strictly breast fed from the time she gets home from daycare to the time she goes to bed (and all throughout the night basically). Keep this info in mind please. Background: When I was pregnant, I had issues my OB said “it’s probably hemorrhoids, which is common during pregnancy”. Months later, that same issue seemed worse. Got referred to a specialty clinic and the doctor decided to do an MRI (w/o contrast) because she did not believe what I was experiencing was “hemorrhoids “. MRI scan showed a 4cm mass in my rectum. She wanted to a Colonoscopy/biopsy but wanted to wait until after I recovered from childbirth. Months after I gave birth, the procedure was done. Results: mass is pre-cancerous. A few more months after that, I was scheduled for a colonoscopy/Anoscopy/Biopsy. Results: still pre-cancerous. Wants to remove the tumor (what she was calling it). Refers me to another doctor. I meet with the doctor and he wants to see whatever the first doctor saw during my colonoscopies so that he can have a better understanding of what is going on so he can make a decision about what to do with the tumor. Finally, the tumor is removed and sent to a pathologist. A few weeks later I go back to the clinic for my follow up and I find out that the tumor was not pre-cancerous. It was cancer. Now, I’m getting referred to an oncologist. I meetbthe oncologist and he confirms I have Stage I T2 Rectal Cancer. Schedules blood work and an MRI. He also refers me to a radiation oncologist. Met with the radiation oncologist and we go through my entire journey from the beginning up until that day. Schedules me for a CT scan. I complete the MRI and fours days later I complete the CT scan. A week later I am back at the radiation clinic to complete a CT sim and get marked (tattooed markings on my body so that I align up in the exact same spot for the radiation machine). The next day, I start radiation. On the 5th day of radiation, I go back and meet the oncologist I was first referred to. He tells me that based upon the MRI imaging, the cancer is now Stage Ill because it is not attacking my lymph nodes. He then prescribes me the anti-cancer chemotherapy drug “Capecitabine” and sends me to complete some blood work. That was yesterday the 21st of November. Today, I find out that my blood work “is good” and to start taking my meds (like today). I haven’t. I can’t breastfeed and I have limited physical interaction with people who might get into contact with my bodily fluids; like sweating and kissing my kids. Here is where I need some help and guidance: How do I just stop breastfeeding? My daughter has never been on the bottle (tried so many times and she refuses) and refuses formula, whole milk, 2% milk, 1% milk, soy milk, almond milk, chocolate milk, strawberry milk, milk in sippy cup, or milk in a cup with and without a straw. I was told that When any chemondrug, others are to not come into contact with my meds or me if there is a chance that my fluids could get on them. I’d have to keep my dirty laundry in a sealed bag, separated from everyone’s laundry. I co-sleep (because of breastfeeding). I have hot flashes at night and for some reason, my thighs, legs, head, and neck sweat. My daughter refuses to sleep in a crib/playpen and if she does, it’s only for 1-2 hours (most of the time). How can I NOT kiss my kids? What do I do. Someone, anyone...please help me. I am going to start taking my chemo pills on Monday (this coming Monday, which is 3 days away). Thanks in advance!

Try extracting and storing as much as possible of your own milk before starting chemo, and use that some days reserve to find a source of someone else's breast milk in your community. 

RE: HELP

by AJJSM639 on Sun Nov 24, 2019 06:13 AM

Quote | Reply

On Nov 24, 2019 1:28 AM ToddlerFather wrote:

On Nov 22, 2019 1:42 PM AJJSM639 wrote:

I have a 14 month baby girl (1 year 2 month old) who is breast fed. She eats solid foods but is strictly breast fed from the time she gets home from daycare to the time she goes to bed (and all throughout the night basically). Keep this info in mind please. Background: When I was pregnant, I had issues my OB said “it’s probably hemorrhoids, which is common during pregnancy”. Months later, that same issue seemed worse. Got referred to a specialty clinic and the doctor decided to do an MRI (w/o contrast) because she did not believe what I was experiencing was “hemorrhoids “. MRI scan showed a 4cm mass in my rectum. She wanted to a Colonoscopy/biopsy but wanted to wait until after I recovered from childbirth. Months after I gave birth, the procedure was done. Results: mass is pre-cancerous. A few more months after that, I was scheduled for a colonoscopy/Anoscopy/Biopsy. Results: still pre-cancerous. Wants to remove the tumor (what she was calling it). Refers me to another doctor. I meet with the doctor and he wants to see whatever the first doctor saw during my colonoscopies so that he can have a better understanding of what is going on so he can make a decision about what to do with the tumor. Finally, the tumor is removed and sent to a pathologist. A few weeks later I go back to the clinic for my follow up and I find out that the tumor was not pre-cancerous. It was cancer. Now, I’m getting referred to an oncologist. I meetbthe oncologist and he confirms I have Stage I T2 Rectal Cancer. Schedules blood work and an MRI. He also refers me to a radiation oncologist. Met with the radiation oncologist and we go through my entire journey from the beginning up until that day. Schedules me for a CT scan. I complete the MRI and fours days later I complete the CT scan. A week later I am back at the radiation clinic to complete a CT sim and get marked (tattooed markings on my body so that I align up in the exact same spot for the radiation machine). The next day, I start radiation. On the 5th day of radiation, I go back and meet the oncologist I was first referred to. He tells me that based upon the MRI imaging, the cancer is now Stage Ill because it is not attacking my lymph nodes. He then prescribes me the anti-cancer chemotherapy drug “Capecitabine” and sends me to complete some blood work. That was yesterday the 21st of November. Today, I find out that my blood work “is good” and to start taking my meds (like today). I haven’t. I can’t breastfeed and I have limited physical interaction with people who might get into contact with my bodily fluids; like sweating and kissing my kids. Here is where I need some help and guidance: How do I just stop breastfeeding? My daughter has never been on the bottle (tried so many times and she refuses) and refuses formula, whole milk, 2% milk, 1% milk, soy milk, almond milk, chocolate milk, strawberry milk, milk in sippy cup, or milk in a cup with and without a straw. I was told that When any chemondrug, others are to not come into contact with my meds or me if there is a chance that my fluids could get on them. I’d have to keep my dirty laundry in a sealed bag, separated from everyone’s laundry. I co-sleep (because of breastfeeding). I have hot flashes at night and for some reason, my thighs, legs, head, and neck sweat. My daughter refuses to sleep in a crib/playpen and if she does, it’s only for 1-2 hours (most of the time). How can I NOT kiss my kids? What do I do. Someone, anyone...please help me. I am going to start taking my chemo pills on Monday (this coming Monday, which is 3 days away). Thanks in advance!

Try extracting and storing as much as possible of your own milk before starting chemo, and use that some days reserve to find a source of someone else's breast milk in your community. 

I’ve tried pumping it and she refuses it in a bottle, sippy cup, and regular cup. How do I get her to drink it? Her pediatrician said to up her solid food intake but she already eats a lot. She normally goes throughout the day at daycare with solids and at home she’ll breastfeed then eat solid food and then breast feed right after. Last time I breastfed her was yesterday before lunch and then she fell asleep. I have been so full and in pain. I pumped but she refused; so I’ve been pumping and dumping. I start taking my chemo pills tomorrow morning.

RE: HELP

by butterfly501 on Mon Nov 25, 2019 03:43 AM

Quote | Reply

You'll have to pump down (and dispose of the milk appropriately) you can't just stop breastfeeding.  And you can't BF while receiving treatment.  Your child is going to have to adjust, because it's more important to have a healthy mother than it is to continue BF. 

Your daughter will have to adjust to new sleep arangments.  And she will.  It may not be easy, but it has to be done.

You'll have to get a primary caregiver for your child during your treatment and recovery.

My husband took on the duty for the time I was doing I-131 ablation and our son was 18 months old.  It's not easy, but it is necessary.

Good luck!

RE: HELP

by AJJSM639 on Tue Nov 26, 2019 06:54 AM

Quote | Reply
She’s at her daycare during the day but her father can’t do much seeing as he sprained his ankle right before my treatments started. Unfortunately, we don’t have a means to a temporary caregiver at nights. My 7 year old took it upon himself to help out as much as possible but I just feel like this whole thing is a burden for everyone (myself included). I’ve been out of work for a few days and we’ll, no work no pay. I’m trying to stay positive and take it one day at a time but I just don’t know what to do. I’m going to continue pumping and dumping.

RE: HELP

by butterfly501 on Wed Nov 27, 2019 10:38 AM

Quote | Reply

Sounds like you should be on your chemo protocol, so just make sure you protect your children from your treatment.  This stuff is no joke. 

If you're in the US, ask your treating team about support services for your family.  They should have a person to assign to you to get you through this.

Also, speak with HR or the company managing your benefits.  You may have short term disability through your company which should have kicked in with your FMLA filing.  Soc. security also has fast tracked benefits for certain disease/illness.  Check to see if yours qualifies.

Good luck!

RE: HELP

by AJJSM639 on Mon Dec 02, 2019 11:53 PM

Quote | Reply

On Nov 27, 2019 10:38 AM butterfly501 wrote:

Sounds like you should be on your chemo protocol, so just make sure you protect your children from your treatment.  This stuff is no joke. 

If you're in the US, ask your treating team about support services for your family.  They should have a person to assign to you to get you through this.

Also, speak with HR or the company managing your benefits.  You may have short term disability through your company which should have kicked in with your FMLA filing.  Soc. security also has fast tracked benefits for certain disease/illness.  Check to see if yours qualifies.

Good luck!

Thank you. I will surely look into that. Also, I try to keep myself clean and free of sweat when around my family members. I don’t want to chance making them sick with the side effects.
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