Clearly according to this post title you know where I am. We met with my neurosurgeon today and learned the culture of my wound puss was positive for eColi. Also that my surgeon did not like that I had one puffy spot with puss despite being on Keflex. The Keflex did clean up a lot of the infection but he did not want to sit with the infection much longer due to my compromised immune system from chemotherapy and radiation.
Ultimately my lack of immune system has made my body not be capable of fighting off bacteria all us humans are walking around with everyday. We all have random bacteria that affect people worse when they have no immun system. I have no white blood cells and they are not fighting off infection.
That being said my surgeon decided he wanted to do surgery on my wound to clean out the infection. What does that entail? Well he had to reopen my crainiotomy scarline, clean out the skin, remove the skull plate that was removed during the removal of my brain tumor, check the skull for infection, then disinfect the skull if it does not appear infected by the eye and then wash out my brain and my scalp with antibacterial stuff. A culture will be done of my skull front and back, skin wound and top of my skin to determine if the eColi culture was accurate and determine what type of bacteria my head was growing.
If my skull is infected, well that's just bad. I will have a dent in my head, would be off of chemo for 2-3 weeks, be on antibiotics and would have to wait 3-4months until my skull or a metal plate can go into my skull to reform my already deformed head. I would also need a month break from chemo possibly to make sure my counts are Ok for surgery. THIS IS THE WORST that could happen and would transcend a bunch of other bad shiT. Too many pauses in chemo = more room for cancer to grow. Also if my skull is messed up on April 1, we probably are gonna have to move our wedding and lose money and get married at a courthouse.
I just wanna marry Kyle. When this cancer was under control, I had very little fear of cancer coming and ruining a wedding I wanted with him, something we deserve...a day to celebrate us and not deal with my cancer and normal day to day issues that are always conplicated by this shitty cancer.
BEST CASE SCENARIO is (and this is what my surgeon and oncologist agreed on) that we have the surgery to clean out the wound, find out the bacteria and get me on an antibiotic, & then restart my Carbo/Gemzar in two weeks. Also my wound will be closed by a plastic surgeon this time to make sure the wound is clean and sewed up right. The antibiotic can be oral or IV. If it's IV I will get some dosing at the hospital and then will get a visiting nurse to come to our house and give me the IV chemo at home for whatever schedule is prescribed by the Infectious Disease Department. I Meet with Infectious Disease tomorrow and they will work with my surgeon and oncologist for an aftercare plan for my infection and cancer.
So yea that's this weeks shitty news...
Good news is my brain MRI is stable and showing signs of regression. No growth no new brain tumors. Also my tumor markers are dropping within one round of this chemo, so we can assume based on my labs and brain scan that this combo of chemotherapy drugs is working. This is why I worry that this infection will create a huge gap in a treatment that was working and it was and will get me to and past the wedding we have been planning for 9mo.
A year ago I did not want a real wedding out of fear that cancer would get in the way. I used how and positive thinking and coaching from my oncologist and therapist to explore what I would do if cancer wasn't here- I would have a normal wedding, at a venue, in a dress that is a ridiculous party...
But here am living with the fear that not cancer but complications due to cancer will lead to me not getting married and not getting back on treatment that was helping me. I am worried a bacterial infection will lead me with an infected skull and a hole in my head.
BTW I was never told this could happen. Apparently it's common in immune compromised people. Not my family nor myself or my oncologist was really told this or we would have taken bigger preventive measures. So yea I am pretty angry at that...but I was told this is not something I did but not having WBC didn't help.
So here I am at NYP for 4-5days...I can't have many visitors bc I am sharing my room with people who are sicker and older than me. For now Kyle is here and I can have 1 family member in here most of the time. Unless I get my own room after surgery for now I am sharing a room with four people. The hospitals are overcrowded and I also do not know if I can deal mentally with too many people or voices again. I am not doing well emotionally through this and neither is Kyle. We would love emotional support but would hope to limit visitors to 1-2 at a time for now. This is a lot for our little family to take in now.
All I want is to marry Kyle, maybe have a kid with a surrogate and have our cat baby, arya with us. I already miss home and hate this place. I need to be here, but I wish this would all go away and I can go home with my family back to planning our wedding & happy that the drama from November is gone.
Now here we are and we are back and the flashbacks from November are bothering me bad. I have had panic attacks on and off for five days. I am tense and my mood is less hopeful than I usually am. I am holding onto hope that my cancer is retreating. I am holding onto hope that I don't have a fever which possibly means that this infection is contained to my skin (considering Keflex cleared a lot up). Keflex would not work on eColi according to google & my doctor but we need the culture and surgical facts before I come to a conclusion.
Please pray for us. Kyle also may have to leave work. We would appreciate any support emotionally or even sharing our GoFundMe . Thanks and if u wanna visit text or Pm me and we can work something out. I don't know when we will be home. I or Kyle will update more when we know what happened post surgery and my antibiotic and chemotherapy schedule going forward.
I have to keep going forward. I need to ground myself.
Monday, January 9, 2017
Sunday, January 8, 2017
The Never Ending Pink Ribbon Road
So... its January 8th 2017. On November 17, I went home from NYP and had a treatment plan. The last step of that plan was to get my port placed. Once my port surgery was scheduled for January 3rd, I kept telling myself - "After this all you need to do is chemo & a few doctor follow-ups and you can relax until scans in February."
Clearly, things in my life never go that easy.
Example 1:
My hair thinned badly, but I was never told how bad it could get or how long the shedding would last. Of course this happens on Christmas.
Example 2:
My WBC were very low at chemo on the 28th, so I was given 2 Neupogen Shots to give myself over the weekend & I learned yesterday that they didn't even work. COOL
Example 3:
1 round of chemotherapy with proper mouth hygiene left me with THRUSH at 32yrs old. Babies and Kids get thrush. No I did for eating sushi and using alcohol free mouth wash the week prior. This never happened before & I have been on stronger chemotherapy drugs where Sushi would have led me to an ER.
Example 4: (THE NEVER ENDING ROAD OF THE PINK RIBBON I WANT TO BURN)
I had my craniotomy on November 14. I was told it would heal in 4-6 weeks. I started Chemotherapy and Radiation a bit early, but it was agreed by over 10 doctors that I could and would start early, because I needed to. I started early and my Radiation Team kept an eye on my scar. I also kept an eye on the scar for signs of slow healing, infection, etc. I saw my Radiologist on the 13th of December. At that time, I was told my scar was a little pink, but it was due to radiation and to wash my hair less to reduce risk of skin peeling and to keep using the bacitracin I was given post surgery for my scar.
Two weeks pass, my hair starts jumping ship like a Pirate is pushing it off a plank... I have two more rounds of chemotherapy. I was told my cancer markers dropped 30pts each within 1 round of chemotherapy. YAY! I have very low WBC, but a shot would fix it. YAY!
All good news.
See this is example 4 of why my luck is pretty shitty, so the Good news died out pretty quick. On December 30, I noticed my scar had two last scabs on it. One came off when I showered and cleaned my scar. The skin under the scar was pink & I assumed it was similar to how the other scabs left pink skin for a day and then it becomes skin-tone. The following day its redder and tight. I had Kyle look ay it and I also took clean hands to touch the wound for heat, pus and if it hurt - had none. I also had no fever. Two days go by and it gets more pink and less red. Those were the two days I took those Neupogen shots to boost my cell counts. Then on Monday it looked puffy, so of course I am worried, other than the redness no other signs of infection. On Tuesday when I had my port it looked pink and less red again, so I did not have my port surgeon look at it (totally my dumb ass fault). Wednesday there was no change.
NOW here comes Thursday... I woke up that morning and the pink/red spot had a yellow/white dot on it. I went to clean it with alcohol and a swab and yellow/white pus came out and a hair. I was grossed out, but assumed it was an ingrown hair, cleaned the skin and then checked for all other signs of infection - I had none. Hours pass and I went to look at the same spot to inspect if the pus returned. It did and now there were two spots & the pus was green and yellow. Clearly I knew it was infected, which could mean many horrible things if a Craniotomy wound is infected. I called my surgeon, spoke with his PA, whom called in Ceflex antibiotic to clear out the infection & also reported she wanted to speak with my surgeon as the next course of action could be lab work to rule-out if I had bacteria spread in my body and a Brain MRI to make sure my skull wasn't infected, I did not have meningitis, encephalitis, brain swelling, or a bacterial infection in my craniotomy wound in my brain. If my brain was infected, then I was going to have to have surgery again to remove the bacteria. THIS NEWS WAS AWESOME. So I have heightened anxiety and ran to get the antibiotic & then came home and Doctor Googled myself into a Panic attack. Clearly I am a therapist who cannot cope with Anxiety as well as I can help others deal.
Friday comes & ironically I am with my own therapist explaining all this crazy stuff that has happened since I last saw her in October...then my surgeon calls. My PA reported my surgeon wants me to get a BRAIN MRI and LABS & my Surgical Radiologist also agreed. I was told to do it locally to save me a trip and then thoughts of the Riverview ER experience led me right into a Panic Attack and a possible Flashback. I said YES, clearly because I was dissociating. After therapy & some processing with Kyle, I called my surgical PA at NYP and coordinated to get the labs and scans done there & to also meet with surgery to have my scar looked at.
I drove myself into NYC, trying to deep breath and not cry or panic & Kyle ran from work to meet me at the hospital. I got labs drawn & the tech has a bronchial infection. SO DO NOT BE SURPRISED IF I DON'T GET THAT TOO.
Then we meet with the PA (who is awesome btw) and she looked at my wound and clearly felt that it was worse than how I described it on the phone. She took a culture. She also explained that an MRI would be the only way to know if the infection was solely to the skin. She also reported that if the MRI showed something, I would need to me admitted that day. We agreed that Kyle & I would stay in NYC post MRI and she would text or call me with the results of my labs and MRI and determine if we could go home or if I would need to be admitted to the hospital for treatment and surgery again. GREAT! She said if it is just the skin, she was referring me to see a Plastic Surgeon the following week to get the wound irrigated (drained of pus and cleaned & some more gross crap).
Clearly both Kyle and I are sad, upset and were both not even hungry for dinner. We went to the MRI early to just sit & then I got seen 2hours early (thanks to my PA for calling and STATING me and some guy for missing his MRI). MRI was done, I prayed to my angels and god. The MRI tech actually talked me through it and it went fast. I kept hoping "no new tumors," "no new growth", and nothing that would need surgery especially a brain or skull infection. My PA asked me to text her when I got in and out so she could get a WET read before the written report is finished on Saturday. I texted her and she worked for 2hours to get the LABS and the MRI report. She did not have to and she was no longer on working hours. This is what I always hope to see in the medical world, how I social worked above and beyond for my patients, because I liked my job and I cared. She clearly showed that empathy and love for her work. Anyways, my MRI showed no infection and all labs but an ESR lab came back good. We had no report on the MRI. She asked me to text her Saturday to discuss the status of the wound.
On Saturday the wound looked less red in width, but was still puffy. It also oozed white/yellow pus in the morning. I texted my PA this and then sent her an image. She showed my surgeon the image, he went over my MRI report, labs and culture & Dr. Schwartz eventually asked for me to come in on Monday to see him and also to see a Plastic Surgeon to irrigate the wound & possibly other things, but my PA is not sure if he has other ideas or plans, just these. GREAT! So now I am all worried at 6am, when I saw the text, and I did not go back to sleep. I instead freaked for 2hours in bed and couldn't eat. I texted my PA what does this mean, should I be worried - yes I will be there. She writes back no nothing to worry, just your ESR was slightly elevated and he didn't like the look of your wound. She said good news is your MRI looked GOOD. Now the hopeful person I can be thought "oh yay stable brain, no swelling and now growth or new tumors." The skeptic in me quickly turned that to "she meant no infection and your surgeon saw some tumors and that is why he wants to see you." BTW although Dr. Schwartz is a good surgeon who did a great job and at no way is at fault for my infection (I blame it on chemo wiping my WHITE CELLS). He is not my neuroncological surgeon for breast cancer who reads my MRIs and works with my Radiation Oncology Team and does most surgeries for metastasis to the brain. Also try to make sense of the two surgeons and that one of them also works with my radiation oncologist and then tell me how you made sense of that one, so I can make sense of it. I can't make heads or tails of that one, so of course I just think that it would be easier for the one who ordered the scan to give me bad news in person.
So this is what I am thinking about. How tomorrow will bring more bad news and I won't ever get that break from cancer drama (TUMORS IN BRAIN, SURGERY, CHEMO FAILING, RADIATION AGAIN AND MORE HAIR GONE BEFORE MY WEDDING) and get cancer normal (YOU KNOW follow ups at doctors & scan, treat, REPEAT).
I also have caused Kyle to miss so much work in the last three months. I hate how cancer led me to leave my job and I hate how it forces him to leave his job for days due to emergencies caused by stupid cancer. I am so afraid that cancer is going to leave us both unemployed, uninsured, homeless, and broke. Between us both missing work, I worry neither of us will have an income one day. Of course I am worried that the TRUMP crew's desire to remove government health care, both of us will be screwed & I will be dead due to no health care or insurance and an inability to pay for my 80,000dollar before insurance stints at NYP hospital. I am so glad people who wanna save a buck for themselves don't care about the collective whole. Thanks capitalism you are a true asshat and you ruined our country.
Oh and then there is that thought that me being here with and having cancer HAS and WILL continue to ruin my family's, Kyle's family and Kyle until either my cancer vanishes (maybe a cure) or I die. So I have been pretty depressed and anxious after I was just reclaiming hope that the craziness was slowing down and we would get a break here.
Wonderful....so here is my blog of positivity for the day, enjoy. I don't want any political posts ON THIS. I need to put my anger into something and right now its the government.
Clearly, things in my life never go that easy.
Example 1:
My hair thinned badly, but I was never told how bad it could get or how long the shedding would last. Of course this happens on Christmas.
Example 2:
My WBC were very low at chemo on the 28th, so I was given 2 Neupogen Shots to give myself over the weekend & I learned yesterday that they didn't even work. COOL
Example 3:
1 round of chemotherapy with proper mouth hygiene left me with THRUSH at 32yrs old. Babies and Kids get thrush. No I did for eating sushi and using alcohol free mouth wash the week prior. This never happened before & I have been on stronger chemotherapy drugs where Sushi would have led me to an ER.
Example 4: (THE NEVER ENDING ROAD OF THE PINK RIBBON I WANT TO BURN)
I had my craniotomy on November 14. I was told it would heal in 4-6 weeks. I started Chemotherapy and Radiation a bit early, but it was agreed by over 10 doctors that I could and would start early, because I needed to. I started early and my Radiation Team kept an eye on my scar. I also kept an eye on the scar for signs of slow healing, infection, etc. I saw my Radiologist on the 13th of December. At that time, I was told my scar was a little pink, but it was due to radiation and to wash my hair less to reduce risk of skin peeling and to keep using the bacitracin I was given post surgery for my scar.
Two weeks pass, my hair starts jumping ship like a Pirate is pushing it off a plank... I have two more rounds of chemotherapy. I was told my cancer markers dropped 30pts each within 1 round of chemotherapy. YAY! I have very low WBC, but a shot would fix it. YAY!
All good news.
See this is example 4 of why my luck is pretty shitty, so the Good news died out pretty quick. On December 30, I noticed my scar had two last scabs on it. One came off when I showered and cleaned my scar. The skin under the scar was pink & I assumed it was similar to how the other scabs left pink skin for a day and then it becomes skin-tone. The following day its redder and tight. I had Kyle look ay it and I also took clean hands to touch the wound for heat, pus and if it hurt - had none. I also had no fever. Two days go by and it gets more pink and less red. Those were the two days I took those Neupogen shots to boost my cell counts. Then on Monday it looked puffy, so of course I am worried, other than the redness no other signs of infection. On Tuesday when I had my port it looked pink and less red again, so I did not have my port surgeon look at it (totally my dumb ass fault). Wednesday there was no change.
NOW here comes Thursday... I woke up that morning and the pink/red spot had a yellow/white dot on it. I went to clean it with alcohol and a swab and yellow/white pus came out and a hair. I was grossed out, but assumed it was an ingrown hair, cleaned the skin and then checked for all other signs of infection - I had none. Hours pass and I went to look at the same spot to inspect if the pus returned. It did and now there were two spots & the pus was green and yellow. Clearly I knew it was infected, which could mean many horrible things if a Craniotomy wound is infected. I called my surgeon, spoke with his PA, whom called in Ceflex antibiotic to clear out the infection & also reported she wanted to speak with my surgeon as the next course of action could be lab work to rule-out if I had bacteria spread in my body and a Brain MRI to make sure my skull wasn't infected, I did not have meningitis, encephalitis, brain swelling, or a bacterial infection in my craniotomy wound in my brain. If my brain was infected, then I was going to have to have surgery again to remove the bacteria. THIS NEWS WAS AWESOME. So I have heightened anxiety and ran to get the antibiotic & then came home and Doctor Googled myself into a Panic attack. Clearly I am a therapist who cannot cope with Anxiety as well as I can help others deal.
Friday comes & ironically I am with my own therapist explaining all this crazy stuff that has happened since I last saw her in October...then my surgeon calls. My PA reported my surgeon wants me to get a BRAIN MRI and LABS & my Surgical Radiologist also agreed. I was told to do it locally to save me a trip and then thoughts of the Riverview ER experience led me right into a Panic Attack and a possible Flashback. I said YES, clearly because I was dissociating. After therapy & some processing with Kyle, I called my surgical PA at NYP and coordinated to get the labs and scans done there & to also meet with surgery to have my scar looked at.
I drove myself into NYC, trying to deep breath and not cry or panic & Kyle ran from work to meet me at the hospital. I got labs drawn & the tech has a bronchial infection. SO DO NOT BE SURPRISED IF I DON'T GET THAT TOO.
Then we meet with the PA (who is awesome btw) and she looked at my wound and clearly felt that it was worse than how I described it on the phone. She took a culture. She also explained that an MRI would be the only way to know if the infection was solely to the skin. She also reported that if the MRI showed something, I would need to me admitted that day. We agreed that Kyle & I would stay in NYC post MRI and she would text or call me with the results of my labs and MRI and determine if we could go home or if I would need to be admitted to the hospital for treatment and surgery again. GREAT! She said if it is just the skin, she was referring me to see a Plastic Surgeon the following week to get the wound irrigated (drained of pus and cleaned & some more gross crap).
Clearly both Kyle and I are sad, upset and were both not even hungry for dinner. We went to the MRI early to just sit & then I got seen 2hours early (thanks to my PA for calling and STATING me and some guy for missing his MRI). MRI was done, I prayed to my angels and god. The MRI tech actually talked me through it and it went fast. I kept hoping "no new tumors," "no new growth", and nothing that would need surgery especially a brain or skull infection. My PA asked me to text her when I got in and out so she could get a WET read before the written report is finished on Saturday. I texted her and she worked for 2hours to get the LABS and the MRI report. She did not have to and she was no longer on working hours. This is what I always hope to see in the medical world, how I social worked above and beyond for my patients, because I liked my job and I cared. She clearly showed that empathy and love for her work. Anyways, my MRI showed no infection and all labs but an ESR lab came back good. We had no report on the MRI. She asked me to text her Saturday to discuss the status of the wound.
On Saturday the wound looked less red in width, but was still puffy. It also oozed white/yellow pus in the morning. I texted my PA this and then sent her an image. She showed my surgeon the image, he went over my MRI report, labs and culture & Dr. Schwartz eventually asked for me to come in on Monday to see him and also to see a Plastic Surgeon to irrigate the wound & possibly other things, but my PA is not sure if he has other ideas or plans, just these. GREAT! So now I am all worried at 6am, when I saw the text, and I did not go back to sleep. I instead freaked for 2hours in bed and couldn't eat. I texted my PA what does this mean, should I be worried - yes I will be there. She writes back no nothing to worry, just your ESR was slightly elevated and he didn't like the look of your wound. She said good news is your MRI looked GOOD. Now the hopeful person I can be thought "oh yay stable brain, no swelling and now growth or new tumors." The skeptic in me quickly turned that to "she meant no infection and your surgeon saw some tumors and that is why he wants to see you." BTW although Dr. Schwartz is a good surgeon who did a great job and at no way is at fault for my infection (I blame it on chemo wiping my WHITE CELLS). He is not my neuroncological surgeon for breast cancer who reads my MRIs and works with my Radiation Oncology Team and does most surgeries for metastasis to the brain. Also try to make sense of the two surgeons and that one of them also works with my radiation oncologist and then tell me how you made sense of that one, so I can make sense of it. I can't make heads or tails of that one, so of course I just think that it would be easier for the one who ordered the scan to give me bad news in person.
So this is what I am thinking about. How tomorrow will bring more bad news and I won't ever get that break from cancer drama (TUMORS IN BRAIN, SURGERY, CHEMO FAILING, RADIATION AGAIN AND MORE HAIR GONE BEFORE MY WEDDING) and get cancer normal (YOU KNOW follow ups at doctors & scan, treat, REPEAT).
I also have caused Kyle to miss so much work in the last three months. I hate how cancer led me to leave my job and I hate how it forces him to leave his job for days due to emergencies caused by stupid cancer. I am so afraid that cancer is going to leave us both unemployed, uninsured, homeless, and broke. Between us both missing work, I worry neither of us will have an income one day. Of course I am worried that the TRUMP crew's desire to remove government health care, both of us will be screwed & I will be dead due to no health care or insurance and an inability to pay for my 80,000dollar before insurance stints at NYP hospital. I am so glad people who wanna save a buck for themselves don't care about the collective whole. Thanks capitalism you are a true asshat and you ruined our country.
Oh and then there is that thought that me being here with and having cancer HAS and WILL continue to ruin my family's, Kyle's family and Kyle until either my cancer vanishes (maybe a cure) or I die. So I have been pretty depressed and anxious after I was just reclaiming hope that the craziness was slowing down and we would get a break here.
Wonderful....so here is my blog of positivity for the day, enjoy. I don't want any political posts ON THIS. I need to put my anger into something and right now its the government.
Tuesday, December 27, 2016
Hair Loss? What a Christmas Surprise!
I was told radiation would cause hair thinning. Instead I got the Christmas Coal of spending the last 8 days pulling clumps of hair off my head at least 3-4x daily. Now my thick curly hair has become thin, wavy and wait for it......the best Halloween costume for next year
I'm quite irritated at the whole "you won't lose your hair for your wedding goal.." eh I kept some...thanks I will have some hairs blowing in the wind and will end the night with a good horror flick to go with my awesome hair
Thinning to a girl with a ton of hair does not equate to thinning to a medical team. I am assuming thinning in the medical world is tiny bald spots or possibly your whole head. I'm not mad at them I was told thinning . Clearly my hair is THIN now. Thinning to me is like living a few strands here and there but a bit more than normal. Over the last week I have lost about 1/2 of my hair thickness. I have lost some nickel sized dots of hair on my left side and middle part region. Luckily I lost none on the right and have a deep right part, it may be fixable and no wig will be neeeded
Regardless of how fixable this is. I went through a full PTSD episode from losing hair. My mind went back to losing it in 2010. I kept picturing me bald, me not having hair at my wedding and the hair not growing back this time. I was also pissed that the hair fell out and now my thick 24inch hair cannot be donated. It was a worthless goal for 5yrs, yet another thing cancer has stolen from me.
Since my anxiety and PTSD is back...yay! I am going back to therapy. Mostly to deal with being retraumatized by having cancer, looking sick and also not looking like myself AT ALL. I look tired and sad...
Positive of being 2016-2017 crypt keeper : Maybe the radiation worked so well the cancer died...well good die cancer..Cancer stop taking things I like and just die so this hair loss better be worth your crappiness, Cancer.
I have no wigs and I refuse to go out with a bald head or cap... it's too cold for a head scarf....thanks cancer for giving me the bird and taking away my HAIR the only thing I was able to hold onto for hope in the last two months. Now it's ripping away and I have no idea when it will stop falling out. I hope today is the last of it. I would like to begin to plan how to fix my hair. I need something I can manage and control while dealing with an unmanageable disease.
That being said I need recommendations for hair dressers who worked with alopecia or moderate hair thinning. This person also i hope won't be grossed out by surgery scars and The Crypt Keeper look I am developing..
If my hair stops jumping ship:
1. Getting a hair cut to make my hair look thicker.
2. Getting tape-in extensions and possibly a topper for my bang/forehead to cover my surgery scar
I also want to plan for the worst:
I need a few recommended places in NJ or NYC to get a custom, real hair wig & good synthetics
Thanks guys
Thinning to a girl with a ton of hair does not equate to thinning to a medical team. I am assuming thinning in the medical world is tiny bald spots or possibly your whole head. I'm not mad at them I was told thinning . Clearly my hair is THIN now. Thinning to me is like living a few strands here and there but a bit more than normal. Over the last week I have lost about 1/2 of my hair thickness. I have lost some nickel sized dots of hair on my left side and middle part region. Luckily I lost none on the right and have a deep right part, it may be fixable and no wig will be neeeded
Regardless of how fixable this is. I went through a full PTSD episode from losing hair. My mind went back to losing it in 2010. I kept picturing me bald, me not having hair at my wedding and the hair not growing back this time. I was also pissed that the hair fell out and now my thick 24inch hair cannot be donated. It was a worthless goal for 5yrs, yet another thing cancer has stolen from me.
Since my anxiety and PTSD is back...yay! I am going back to therapy. Mostly to deal with being retraumatized by having cancer, looking sick and also not looking like myself AT ALL. I look tired and sad...
Positive of being 2016-2017 crypt keeper : Maybe the radiation worked so well the cancer died...well good die cancer..Cancer stop taking things I like and just die so this hair loss better be worth your crappiness, Cancer.
I have no wigs and I refuse to go out with a bald head or cap... it's too cold for a head scarf....thanks cancer for giving me the bird and taking away my HAIR the only thing I was able to hold onto for hope in the last two months. Now it's ripping away and I have no idea when it will stop falling out. I hope today is the last of it. I would like to begin to plan how to fix my hair. I need something I can manage and control while dealing with an unmanageable disease.
That being said I need recommendations for hair dressers who worked with alopecia or moderate hair thinning. This person also i hope won't be grossed out by surgery scars and The Crypt Keeper look I am developing..
If my hair stops jumping ship:
1. Getting a hair cut to make my hair look thicker.
2. Getting tape-in extensions and possibly a topper for my bang/forehead to cover my surgery scar
I also want to plan for the worst:
I need a few recommended places in NJ or NYC to get a custom, real hair wig & good synthetics
Thanks guys
Thursday, December 15, 2016
Radiation is Finished, but we still need help
I finished my last round of Stereotactic Radiation Therapy yesterday. 5 all done... they were long, sometimes scary, and now I am just tired. Tired from traveling to NYC so much in the last 5 weeks, tired from the waiting, and just the treatment in general.
Radiation follow-up is a visit with my doctor in 5 weeks and a possible follow-up brain MRI in 4 weeks. My radiation oncologist and medical oncologist want to make sure all my scans are timed up - to save us travel time and to get all the medical facts out there together as a team. Sounds good to me.
What happens now??
1. I continue on chemotherapy (yet another drug I take until it stops working and move onto another) - Carboplatin/Gemzar. These are IV drugs, I get them two weeks in a row with a break week.
2. I keep calling Intervention Radiology to get my passport placed in my left arm
3. We hope chemotherapy and radiation work, we can collect my T Cells to use in a possible trial
4. We continue chemotherapy, hope my brain stays stable and I get to have a good 5months of cancer dying before my wedding and hopefully after
Radiation is done BUT We still need help.
I cannot be alone until 12/26/17 for longer than a few hours. Why? I had brain radiation, I could have brain issues and need help. Nothing medically scary has not happened since I was hospitalized. If you know me, I will push myself even if I am tired or injured. I am stubborn and I have a hard time slowing down in general... so being on steroids makes that behavior worse. My doctors are fully aware of my history of doing crazy things (exercise, paint, drive without clearance, walk NYC for miles with no white blood cells, and you know drive and work out with a 5cm tumor in my brain. So here is why I get to be adult babysat. I also get fatigued easily. I can walk 2-3miles slowly daily, pick up stuff, fold laundry etc, but it exhausts me and I HATE THAT! I HATE ASKING FOR HELP! BUT I NEED HELP... damn and I am asking. So this is what our household still needs support or help for:
What could you do to help?
1. Come visit. Text or email me and please take me out of this damn house. I have people coming pretty much everyday except: December 19 PM, 22 AM and December 23 AM. I do believe I have family coming those two nights. Regardless you can come visit and we can move plans around.
2. Food Train. Please ask me or Kyle if you can bring food. We are actually low on help with that and I would love to cook and get back to me, but I still cannot cook dinners or lunch due to fatigue. I have no ride to the store and carrying groceries and cooking is too much for me to do. I get tired and have to recover from radiation and still am recovering from surgery.
3. Share the GoFundMe Page, we are so close to the end (minus my new medical bills). I appreciate all the sharing and donations
4. READ THIS TO EDUCATE YOURSELF AND SAVE ME SANITY
I am on steroids, so I am getting annoyed easily, so I am going to go all educator and social worker right now on WHAT IS METASTATIC BREAST CANCER. I am tired of answering the same questions about Cancer As I enter into my 7th year of having cancer, the constant either denial or lack of awareness I feel like either people do not listen or do not want to get the seriousness of what Kyle and I have had to deal with as a couple and what I deal with daily.
Here goes my rant:
1. Society tells us that cancer patients go on treatment, it has a beginning and end, and then they stop. This is mostly true for some early stage cancers. I am no longer early stage and because of my age at diagnosis, I have been on some type of Cancer therapy going on 6yrs now. I have maybe had 1-2 weeks off from one type of treatment, but I HAVE BEEN ON CHEMOTHERAPY, TARGETED THERAPY, OR ANTI-HORMONAL THERAPY FOR BREAST CANCER FOR 6YRS. Since I finished early stage chemotherapy, I have been on many types of oral cancer drugs (targeted, anti-hormonal, injections, and chemotherapy). These are only easier, because you take them at home, you do not need to go to the IV room, and people assume chemotherapy is IV only and that things are fine because you are not strapped to a pole. ALL CANCER TREATMENTS HAVE SIDE EFFECTS AND SUCK.
2. Why do I NEVER HAVE AN END TO TREATMENT? My breast cancer moved from the breast (who knows when) and reappeared in my pleural lung cavity in 2013. It was small metastasis, and was considered Oligiometastatic. I called it 3D as a JOKE. There is no 3D breast cancer, just STAGE 4. What is stage 4 cancer?? It is when cancer moves beyond its original organ or site, it becomes Metastatic. Metastatic Cancers mean you will be terminal, it is chronic, there is no cure, and you will be on treatment for the rest of your life.
Metastatic Breast Cancer is what I have had since 2013. My cancer moved from my breast, I was in remission for almost 3yrs, and it laid itself in my pleural lung cavity. At that point, I could only hope for a cure, I would always be in cancer treatment, and I had to hope and pray that each cancer therapy I was given would fight the cancer long enough in my body to give me more time than the 33mo the government stats said I had. I beat the 33months with metastatic disease. I will be on treatment for the rest of my life.
My medical life forever:
I get labs before each round of treatment (going into 3.5yrs of this)
I get scans every 3-4 months unless my labs are poor (CT scans and Brain MRIs)
If the labs and scans show regression or stability, I stay on my medication.
If the cancer grows, I could get radiation and stay on my chemotherapy (if body organs are stable).
If the cancer grows in my organs and I cannot use radiation, I change treatments.
THIS REPEATS
THIS REPEATS UNTIL I RUN OUT OF THERAPIES and trials.
Then MY BODY STOPS RESPONDING WELL TO CARE AND I GO ON HOSPICE.
THIS IS REAL..
I HAVE WATCHED 5 FRIENDS DIE THIS LAST YEAR, TWO ARE ON HOSPICE, AND MANY KEEP PROGRESSING ON TREATMENT. I WATCHED MY AUNT DIE FROM CANCER.... THIS IS WHAT HAPPENS
IT HAPPENS BECAUSE RESEARCH IS STILL UNDERFUNDED.
There is no end to my treatment. We hope Carboplatin/Gemzar works as well as it did for my Aunt Kerry in 2011. We pray I do not need radiation to my brain or bones again anytime soon. I just pray for a break here and there so I can do what I want beyond doctors. I have been in and out of chemos, surgeries, radiation, strange biopsies scans, etc for 7yrs... I am tired. I want some good news. That's all i ask.
to help funding for Metastatic Cancer Research please go to www.metavivor.org
thanks for listening to my steroidal rant. I am going to eat my soggy cereal i forgot about when typing this post
Radiation follow-up is a visit with my doctor in 5 weeks and a possible follow-up brain MRI in 4 weeks. My radiation oncologist and medical oncologist want to make sure all my scans are timed up - to save us travel time and to get all the medical facts out there together as a team. Sounds good to me.
What happens now??
1. I continue on chemotherapy (yet another drug I take until it stops working and move onto another) - Carboplatin/Gemzar. These are IV drugs, I get them two weeks in a row with a break week.
2. I keep calling Intervention Radiology to get my passport placed in my left arm
3. We hope chemotherapy and radiation work, we can collect my T Cells to use in a possible trial
4. We continue chemotherapy, hope my brain stays stable and I get to have a good 5months of cancer dying before my wedding and hopefully after
Radiation is done BUT We still need help.
I cannot be alone until 12/26/17 for longer than a few hours. Why? I had brain radiation, I could have brain issues and need help. Nothing medically scary has not happened since I was hospitalized. If you know me, I will push myself even if I am tired or injured. I am stubborn and I have a hard time slowing down in general... so being on steroids makes that behavior worse. My doctors are fully aware of my history of doing crazy things (exercise, paint, drive without clearance, walk NYC for miles with no white blood cells, and you know drive and work out with a 5cm tumor in my brain. So here is why I get to be adult babysat. I also get fatigued easily. I can walk 2-3miles slowly daily, pick up stuff, fold laundry etc, but it exhausts me and I HATE THAT! I HATE ASKING FOR HELP! BUT I NEED HELP... damn and I am asking. So this is what our household still needs support or help for:
What could you do to help?
1. Come visit. Text or email me and please take me out of this damn house. I have people coming pretty much everyday except: December 19 PM, 22 AM and December 23 AM. I do believe I have family coming those two nights. Regardless you can come visit and we can move plans around.
2. Food Train. Please ask me or Kyle if you can bring food. We are actually low on help with that and I would love to cook and get back to me, but I still cannot cook dinners or lunch due to fatigue. I have no ride to the store and carrying groceries and cooking is too much for me to do. I get tired and have to recover from radiation and still am recovering from surgery.
3. Share the GoFundMe Page, we are so close to the end (minus my new medical bills). I appreciate all the sharing and donations
4. READ THIS TO EDUCATE YOURSELF AND SAVE ME SANITY
I am on steroids, so I am getting annoyed easily, so I am going to go all educator and social worker right now on WHAT IS METASTATIC BREAST CANCER. I am tired of answering the same questions about Cancer As I enter into my 7th year of having cancer, the constant either denial or lack of awareness I feel like either people do not listen or do not want to get the seriousness of what Kyle and I have had to deal with as a couple and what I deal with daily.
Here goes my rant:
1. Society tells us that cancer patients go on treatment, it has a beginning and end, and then they stop. This is mostly true for some early stage cancers. I am no longer early stage and because of my age at diagnosis, I have been on some type of Cancer therapy going on 6yrs now. I have maybe had 1-2 weeks off from one type of treatment, but I HAVE BEEN ON CHEMOTHERAPY, TARGETED THERAPY, OR ANTI-HORMONAL THERAPY FOR BREAST CANCER FOR 6YRS. Since I finished early stage chemotherapy, I have been on many types of oral cancer drugs (targeted, anti-hormonal, injections, and chemotherapy). These are only easier, because you take them at home, you do not need to go to the IV room, and people assume chemotherapy is IV only and that things are fine because you are not strapped to a pole. ALL CANCER TREATMENTS HAVE SIDE EFFECTS AND SUCK.
2. Why do I NEVER HAVE AN END TO TREATMENT? My breast cancer moved from the breast (who knows when) and reappeared in my pleural lung cavity in 2013. It was small metastasis, and was considered Oligiometastatic. I called it 3D as a JOKE. There is no 3D breast cancer, just STAGE 4. What is stage 4 cancer?? It is when cancer moves beyond its original organ or site, it becomes Metastatic. Metastatic Cancers mean you will be terminal, it is chronic, there is no cure, and you will be on treatment for the rest of your life.
Metastatic Breast Cancer is what I have had since 2013. My cancer moved from my breast, I was in remission for almost 3yrs, and it laid itself in my pleural lung cavity. At that point, I could only hope for a cure, I would always be in cancer treatment, and I had to hope and pray that each cancer therapy I was given would fight the cancer long enough in my body to give me more time than the 33mo the government stats said I had. I beat the 33months with metastatic disease. I will be on treatment for the rest of my life.
My medical life forever:
I get labs before each round of treatment (going into 3.5yrs of this)
I get scans every 3-4 months unless my labs are poor (CT scans and Brain MRIs)
If the labs and scans show regression or stability, I stay on my medication.
If the cancer grows, I could get radiation and stay on my chemotherapy (if body organs are stable).
If the cancer grows in my organs and I cannot use radiation, I change treatments.
THIS REPEATS
THIS REPEATS UNTIL I RUN OUT OF THERAPIES and trials.
Then MY BODY STOPS RESPONDING WELL TO CARE AND I GO ON HOSPICE.
THIS IS REAL..
I HAVE WATCHED 5 FRIENDS DIE THIS LAST YEAR, TWO ARE ON HOSPICE, AND MANY KEEP PROGRESSING ON TREATMENT. I WATCHED MY AUNT DIE FROM CANCER.... THIS IS WHAT HAPPENS
IT HAPPENS BECAUSE RESEARCH IS STILL UNDERFUNDED.
There is no end to my treatment. We hope Carboplatin/Gemzar works as well as it did for my Aunt Kerry in 2011. We pray I do not need radiation to my brain or bones again anytime soon. I just pray for a break here and there so I can do what I want beyond doctors. I have been in and out of chemos, surgeries, radiation, strange biopsies scans, etc for 7yrs... I am tired. I want some good news. That's all i ask.
to help funding for Metastatic Cancer Research please go to www.metavivor.org
thanks for listening to my steroidal rant. I am going to eat my soggy cereal i forgot about when typing this post
Thursday, December 8, 2016
Almost done with the biggest Mountain of this...
As you all know last week I received my first week of round 1 of chemotherapy - Carboplatin & Gemzar. It was a pretty easy chemo. 1st day after I was fine probably because of the IV Steroids I had to get. Thursday I was tired and wanted to nap. Friday felt like I had a mild flu - cold, body aches, and slow to move. Saturday, I was all better, but still needed more rest than usual. Nothing too bad and nothing I cannot tolerate with balancing rest, walking, and living my life.
Last Friday, I got the solid plan for my Steriotatic Radiosurgery Treatments. 5 sessions of SBRT (just means more than 1 SRS using the same machine) to the incision line of my surgery site and they are using SRS treatments using something called TruBeam SRS (not cyberknife like I was assuming) on the small spots, a little each day.
In addition to having 5 radiation sessions tacked between chemotherapy, I had to be put on 8mg of steroids daily, but they made sure they worked to help combat some of the anxiety and hyperactivity that occurs from me and Dexamethasone. The plan using the steroids with a calming agent has kinda helped, I am sleeping and not shaking. Steroids are also good so my brain doesn't swell and I don't die or something bad from radiation. So I am ok being on these steroids. I am just loosing weight on Steroids and trying to maintain weight on a known weight gainer is odd. I am also getting a lot done, talking too much, and seriously enjoying Christmas shopping too much. Welcome back hypomania, you are not fun. I am also very thirsty.... which could be the medications I get orally, the radiation to my brain or chemotherapy.
I had two radiation sessions. The first went quick and easy and took 40min max...easy right? The second was hard, we were doing more spots than my first session. I was able to get through 95% of the session and eventually my head couldn't remain still for the radiation anymore, I was in the head cage for 1.5hrs at that point. Doctor came in and explained it would be worse to force me for prescion of the radiation. So we are taking that extra 5% I couldn't sustain to Friday. Apparently people tend to miss more than 5% more often at each session and they tack them onto other days. Its no big deal and better to be still as possible so radiation can be EXACT.
So 3 more radiation sessions left and no chemotherapy next week.
WHAT TO COME??
I am still waiting on an appointment to get a Passport (port under the top of my arm in my armpit region) done. Why a port? I never got one ever and had so many chemotherapies and infusions etc, that my right arm (we cannot use the left because it has lymphedema) has very little good veins to use anymore to place a line for treatment. Not good... so waiting on that.
We sent off my brain tumor to prescion medicine to get the genes checked out. We will continue two weeks on with both Carboplatin/Gemzar as long as it kicks my cancer's butt. I am going to be seriously immunosuppressed on these medications. If you are sick or have been near things that can spread germs, just be conscious that I do not want to be sick and cannot get sick. I know people wanna visit, but coming to see me sick is not what I need now. I also cannot be in large crowds and I get tired easy... so there goes dragging me to some concerts and bars for a bit. I never usually go to those things, but just saying. I am kinda not gonna run around crazy and end up sick or hurt (been there do not wanna go there again).
Still in the wings with the trial. Ultimately goal is to have chemo get my markers dropping and start talking to Sloan about enrolling me in the trial. I will need a stable brain MRI 4mo post radiation and be off of chemotherapy for 2 weeks. So the timing is odd, I am leaving that up to my oncologist and will continue to talk over with her.
Kyle is back at work. I am home being a slave to medical doctors and running around on steroids cleaning, decorating and begging people to take me out of my house!!! please!!! steal me!!! I cannot drive until the 26th!!! please soon!!!
If you feel inclined to help us financially there are a few ways:
1. share my GoFundMe
2. if you can a small donation would help, but I do not want to beg you, share if that's all you can do
Last Friday, I got the solid plan for my Steriotatic Radiosurgery Treatments. 5 sessions of SBRT (just means more than 1 SRS using the same machine) to the incision line of my surgery site and they are using SRS treatments using something called TruBeam SRS (not cyberknife like I was assuming) on the small spots, a little each day.
In addition to having 5 radiation sessions tacked between chemotherapy, I had to be put on 8mg of steroids daily, but they made sure they worked to help combat some of the anxiety and hyperactivity that occurs from me and Dexamethasone. The plan using the steroids with a calming agent has kinda helped, I am sleeping and not shaking. Steroids are also good so my brain doesn't swell and I don't die or something bad from radiation. So I am ok being on these steroids. I am just loosing weight on Steroids and trying to maintain weight on a known weight gainer is odd. I am also getting a lot done, talking too much, and seriously enjoying Christmas shopping too much. Welcome back hypomania, you are not fun. I am also very thirsty.... which could be the medications I get orally, the radiation to my brain or chemotherapy.
I had two radiation sessions. The first went quick and easy and took 40min max...easy right? The second was hard, we were doing more spots than my first session. I was able to get through 95% of the session and eventually my head couldn't remain still for the radiation anymore, I was in the head cage for 1.5hrs at that point. Doctor came in and explained it would be worse to force me for prescion of the radiation. So we are taking that extra 5% I couldn't sustain to Friday. Apparently people tend to miss more than 5% more often at each session and they tack them onto other days. Its no big deal and better to be still as possible so radiation can be EXACT.
So 3 more radiation sessions left and no chemotherapy next week.
WHAT TO COME??
I am still waiting on an appointment to get a Passport (port under the top of my arm in my armpit region) done. Why a port? I never got one ever and had so many chemotherapies and infusions etc, that my right arm (we cannot use the left because it has lymphedema) has very little good veins to use anymore to place a line for treatment. Not good... so waiting on that.
We sent off my brain tumor to prescion medicine to get the genes checked out. We will continue two weeks on with both Carboplatin/Gemzar as long as it kicks my cancer's butt. I am going to be seriously immunosuppressed on these medications. If you are sick or have been near things that can spread germs, just be conscious that I do not want to be sick and cannot get sick. I know people wanna visit, but coming to see me sick is not what I need now. I also cannot be in large crowds and I get tired easy... so there goes dragging me to some concerts and bars for a bit. I never usually go to those things, but just saying. I am kinda not gonna run around crazy and end up sick or hurt (been there do not wanna go there again).
Still in the wings with the trial. Ultimately goal is to have chemo get my markers dropping and start talking to Sloan about enrolling me in the trial. I will need a stable brain MRI 4mo post radiation and be off of chemotherapy for 2 weeks. So the timing is odd, I am leaving that up to my oncologist and will continue to talk over with her.
Kyle is back at work. I am home being a slave to medical doctors and running around on steroids cleaning, decorating and begging people to take me out of my house!!! please!!! steal me!!! I cannot drive until the 26th!!! please soon!!!
If you feel inclined to help us financially there are a few ways:
1. share my GoFundMe
2. if you can a small donation would help, but I do not want to beg you, share if that's all you can do
Wednesday, November 30, 2016
Summary of My New Neurosurgeon/Radio-Surgeon and my first IV Chemo in 6yrs
Neurosurgical Consult
(all the doctors, treatments and drugs are hyperlinked)
On Monday 12/5/16, we had an appointment with Dr Ramakrishna . Ultimately the goal to line me up with him is that 1. He will be following me bimonthly with MRIs to track my brain and 2. He specializes in Radio-Neuoseurgery and works with my new Radiation Oncologist team on the SRS Radiation like the type of SRS (there are many) I will get. He agreed that 5 cyber knife sessions to my scar line every other day and also that the mm spots will be zapped that same day 2 spots each session with True Beam SRS Radiation.
Side Effects: Fatigue
Small hair loss from the spots that get radiation, but its thinning & will grow back (I already was planning on cutting my hair into a bob before the wedding, but now I get some extensions to fill it in)
Possible need for steroids (trying to avoid them) if brain begins to get swollen from radiation.
Easy appointment, doctor sounds good in person and online.
Chemotherapy
On Tuesday I started chemotherapy, Gemzar and Carboplatin. First IV chemo in years, I was nervous and scared to death and was afraid of more steroids after how they make me so manic. So we meet my APN review side effects & with my MD and pharmacist approval tried to go without the steroids as a pre-med.
Pre Meds: Aloxi, Emend, Pepcid AC and we did not use the Steroids, but had to (see below)... well enjoy a chatty Cathy again and some hypomania and ADHD after chemo days.
Chemotherapy: Gemzar over 30min and Carboplatin over 1hour (1x every week for 2 weeks with one week off)
Side Effects: Flu-Like Symptoms (muscle aches, possible fever, tiredness) the night after chemotherapy
Mild-Nausea
Indigestion
Diaherra
Risk of lowered White and Red Blood Cells & Platelets
Started the pre-meds and got an allergic reaction to the Emend (as it can do that). Throat closed up, wheezing and redness. We had to put the steroids in. So fear and anxiety came back, I felt like crap. After that chemo went easy and no problems.
Today is the next day, I feel tired that's all no nausea a little stomach ache. Last night I had achy muscles like the flu, which I was told would happen.
We were told yesterday that SRS Radiation starts on 12/5 at 5pm. All radiations may be that late, but we are waiting on the next four appointments. My next chemo is 12/6. Kyle is my transport to those. We are working with out family regard rides to four radiations & also anyone to come spend a day with me on 12/10 and 12/17, because Kyle needs to go to work and I am not cleared to be alone all day yet. I asked some family first, but then may need a friend those days.
Kyle goes back to work on the 7th. Mostly will need people to come for company on: 12/8, 12/10, 12/13, 12/15, 12/17, and 12/19 for now. We are waiting on my neurosurgeon to tell me when I can take the subway for doctors. We are assuming by 12/19 and if I can be alone before 12/19.
If you feel inclined to help us financially there are a few ways:
1. share my GoFundMe
2. if you can a small donation would help, but I do not want to beg you, share if that's all you can do
3. share my Poshmark site with friends on Facebook or if you are on Poshmark - selling the used clothes helps
4. I am not doing Younique for now, but will be back. So doing parties and sharing my home business would help. I am planning on being back selling by mid January. For now my team is handling any holiday sales so I can get better.
Thanks all!
(all the doctors, treatments and drugs are hyperlinked)
On Monday 12/5/16, we had an appointment with Dr Ramakrishna . Ultimately the goal to line me up with him is that 1. He will be following me bimonthly with MRIs to track my brain and 2. He specializes in Radio-Neuoseurgery and works with my new Radiation Oncologist team on the SRS Radiation like the type of SRS (there are many) I will get. He agreed that 5 cyber knife sessions to my scar line every other day and also that the mm spots will be zapped that same day 2 spots each session with True Beam SRS Radiation.
Side Effects: Fatigue
Small hair loss from the spots that get radiation, but its thinning & will grow back (I already was planning on cutting my hair into a bob before the wedding, but now I get some extensions to fill it in)
Possible need for steroids (trying to avoid them) if brain begins to get swollen from radiation.
Easy appointment, doctor sounds good in person and online.
Chemotherapy
On Tuesday I started chemotherapy, Gemzar and Carboplatin. First IV chemo in years, I was nervous and scared to death and was afraid of more steroids after how they make me so manic. So we meet my APN review side effects & with my MD and pharmacist approval tried to go without the steroids as a pre-med.
Pre Meds: Aloxi, Emend, Pepcid AC and we did not use the Steroids, but had to (see below)... well enjoy a chatty Cathy again and some hypomania and ADHD after chemo days.
Chemotherapy: Gemzar over 30min and Carboplatin over 1hour (1x every week for 2 weeks with one week off)
Side Effects: Flu-Like Symptoms (muscle aches, possible fever, tiredness) the night after chemotherapy
Mild-Nausea
Indigestion
Diaherra
Risk of lowered White and Red Blood Cells & Platelets
Started the pre-meds and got an allergic reaction to the Emend (as it can do that). Throat closed up, wheezing and redness. We had to put the steroids in. So fear and anxiety came back, I felt like crap. After that chemo went easy and no problems.
Today is the next day, I feel tired that's all no nausea a little stomach ache. Last night I had achy muscles like the flu, which I was told would happen.
We were told yesterday that SRS Radiation starts on 12/5 at 5pm. All radiations may be that late, but we are waiting on the next four appointments. My next chemo is 12/6. Kyle is my transport to those. We are working with out family regard rides to four radiations & also anyone to come spend a day with me on 12/10 and 12/17, because Kyle needs to go to work and I am not cleared to be alone all day yet. I asked some family first, but then may need a friend those days.
Kyle goes back to work on the 7th. Mostly will need people to come for company on: 12/8, 12/10, 12/13, 12/15, 12/17, and 12/19 for now. We are waiting on my neurosurgeon to tell me when I can take the subway for doctors. We are assuming by 12/19 and if I can be alone before 12/19.
If you feel inclined to help us financially there are a few ways:
1. share my GoFundMe
2. if you can a small donation would help, but I do not want to beg you, share if that's all you can do
3. share my Poshmark site with friends on Facebook or if you are on Poshmark - selling the used clothes helps
4. I am not doing Younique for now, but will be back. So doing parties and sharing my home business would help. I am planning on being back selling by mid January. For now my team is handling any holiday sales so I can get better.
Thanks all!
Tuesday, November 22, 2016
Brief Update Regarding My Page, Care and Treatment
First, I updated my treatment page. It may be helpful to review if you want to share what I am on and each chemotherapy drug and supplement and surgery and radiation treatment have been hyperlinked to what it is and explained why I am on it.
Next is that we are moving towards a solid plan.
Turns out having Brain Metastasis is better than the tumor that has been living in my lung lining for 3.5yrs. The Brain Tumor I had was larger than any cancer I have had (even from 2010). It was 5cm in diameter and has 10 under 1mm tumors in the parietal and temporal lobe. I have started to recollect a lack of emotional connection, loss of memory, acting on auto pilot, and not having good decision making for about two weeks. I was purely functioning on muscle memory, working out and doing bare minimal mental work.
How did I learn this? I re-read emails the week before the hospital with my doctor talking of a HEADACHE and also making plans to start chemotherapy at Cornell and coordinate with Sloan on November 14 and 23 to collect my t-cells for an immunotherapy. I have no recollection of that conversation or making plans. I also wrote nothing down on a calendar nor told Kyle that I was doing this. Me not writing and then talking about the same crap to Kyle (sorry dude) like 20x in a row is unlike me. I am pretty verbal and he even said I was quiet, withdrawn and mooping around a lot. I knew my markers were up and I needed to go on chemo, so the emotional part made sense given what we were dealing with. I also was driving and exercising with this and thats dangerous. I am super glad my temporal and parietal lobe are back. Those areas do things we honestly don't focus on. I am just glad my brain bounced back. I am pretty lucky.
Going forward my doctor is sticking with the same Chemotherapy we have been discussing for two months. She is suspecting the brain tumor is a new beast and is possibly like a BRCA1/2 gene. I am getting thrown on Carboplatin and Gemzar, which is a drug a lot of women with these cancers respond to. Carboplatin increases fatigue and lowers red cells and platelets. Gemzar lowers red cells and platelets and also I cannot drink alcohol on it as it goes right through my liver. I don't drink anyways, so I honestly do not care for that anyway. I NEED my liver before a beer. Just get me a cake people no wine, I will drive you all.
Next new piece is a quiet large neurosurgical, radiological and psychology team because well now my brain is in the piece. My new radiologist is awesome. I do love my old external beam doctor, Dr Butzbach - who is so kind, warm funny and honest, but I need more focused care with a radiologist who also specializes in breast cancer and brain tumors and new clinical trials. Turns out my new doctor's team trained my old radiologist for my bones, which explains why my medical oncologist in NYC kept me with her in NJ for easier care.
So yesterday we meet the radiology team - Dr. Sylvia Formenti at Cornell. I fell in love with them. Honestly, we left feeling great. I was nervous during the CT and she like held my hand during my brain CT. Clearly an awesome, smart, determined funny kind and super involved woman in ways to cure breast cancer with radiation, chemo and immunotherapies. Her and my medical oncologist - Dr Linda Vahdat at Cornell - are really close. I can totally see why as they are both smart, kind funny and have a true desire to find a cure for this. Not many people can say that about doctors (it is sad but horribly true - you can see in my blog, I have been there many a times). She works at Cornell but also is involved nationally for this type of care, worked on the medications for AIDS and then switched to oncology clearly after the AIDS medication came out in the 90s.
Dr Formenti and I reviewed many types of brain radiation and a few studies at Sloan Kettering she has been involved in regarding immunotherapy and brain mets. She is very determined to not let this close doors to any types of trials for me. She thinks ahead. I need that. She decided on 5 sessions of cyber knife therapy. Cyber Knife therapy is a radiation that uses small beams of radiation to the exact tumor. I would be doing this treatment while I start chemo on the 29th as they work well together to get the chemotherapy into the blood brain barrier.
We do not have a date of start yet, but I am assuming it will be the 28 to start cyber knife every other day and add chemotherapy on the 29th. At this time I honestly cannot be alone given both therapies tank your red cells, white and platelets. Kyle and I will be asking for people to walk me in NYC to care and also hang out with me at home. My doctors also ordered this to keep me safe. I can walk etc, but no driving or being alone for 4 more weeks. If you want to come by a day, shoot me a text. If you want to be my treatment buddy, come along for a day. All are welcome.
We also will need help with food. We are good until this Friday, but even take out brought or a small meal would help. I am still working up to my old energy and lately anything more than 30min of standing has been exhausting. If you want to send food ask me, Kyle or one of my parents. I would appreciate the help so Kyle can go back to work and I can focus on healing and getting my butt back to driving, working out and being my old self again.
Next steps are clearer, but not settled.
11/28/16 - Meet new Neurosurgeon, Dr. Ramnikrisna, who also does neurosurgery , gamma knife therapies and invasive types of surgical radiation to my head. We are setting me up with him for the future and have him also follow me every two months with an MRI of my brain. He also will be working with my medical and radiation oncologist as a wholistic part of my care.
Sloan Kettering - TCELL TRIAL - We are still moving forward with collecting my t-cells for future tcell therapy when this current crisis settles. T-Cells need to be collected at the most opportune time for obvious reasons - THEY NEED TO BE STRONG! I am calling Sloan today to discuss when I should come in and to help my team at Cornell to work with them... both my doctors want me in this trial. The window for the T-Cell collection has to be 1mo post surgery, 14days post radiation, 7days off of any steroid drugs, and 7 days off of chemo. With how this looks, I probably will be getting the collection in January. I am still on steroids, I cannot delay radiation and I need to heal from brain surgery and start chemotherapy ASAP. To do this trial, its one week off of chemo with a brain MRI that has been stable 4 weeks. I may get the transfusion in late winter if my brain behaves. The t-cell therapy is specific to my lung tumor, since that thing is the most stubborn beast, this trial is a great option for me. So pray my brain responds to radiation & I respond well to the new chemotherapy.
There is also another brain and breast doctor at Sloan - Dr Beal they wanted to connect me with that uses immunotherapy via radiation (shoot the immunotherapy into my head) for recurrent brain metastasis.
Genetics and Pathology - Not back yet. Pathology comes next week. We are also doing another Genetic Panel. My team has done one on every cancer excised from me to create a big map of every DNA problem my cancer has and to keep my cancer open for new trials in immunotherapy.
What I was worried about the most:
Last but not least... why I am not doing whole brain radiation. I know this cancer can get bad and a lot of women die from something called Lepo Mets - fluid in our brain and spine. Lepo mets is not a death sentence, as I have a girlfriend who had it for YEARS and never did whole brain until recently - I think its been 8yrs actually. It is a very rare and can happen once someone has brain metastasis. If its not treated right, clinical trials do close and we are left without a paddle. Thats sad, but its so serious you do need more intense care. WBR and intrathelial chemotherapy ports are used to target our whole brain and spine lining & are highly affective. Regardless all I knew was that whole brain is highly affective on that type of disease and I knew I would want to keep that in play just in case I needed it... you can only do whole brain once, so I would rather save the big if things ever get so big.
My team reviewed all radiations including whole brain and why it is good and bad. Then we discussed with my team my desire to hold off until its needed and we are on board. The FDA still says whole brain is the best, but my team feels cyber knife is better given my goals and how young I am & also my genuine concern of needing it for lepo mets ever (see i am just planning ahead).
I have seen 3 women I love more than the world die from Lepo and Brain Mets...There is not one day I do not miss my grandmothers humor and strength, not one day I do not miss calling my aunt kerry to talk about TV and cancer and jokes, and my friend Sheryl who was so smart and funny & a fellow social worker. Brain mets seriously has been a big part of my cancer journey and it does impact my grief, sadness and just depression that cancer is evil and it killed 3 women I admired and considered my best friends. I am seriously sad still and traumatized. I am allowed to miss them. I am lucky I have my family, my uncle, and Sheryl's parents for support. They are part of my home team.
Luckily, my team took that emotional in play and did explain why its done and how it does work in some patients. They did explain that they also are working now with my local psychiatric team to help feel OK with having brain mets and losing so many to cancer. My radiation oncologist called my psychiatrist right in front of me too coordinate care with the new anxiety and recurrent PTSD from the cancer in my life and family.
Thanks all and love you bunches.
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