Dis Breast Cancer Survivors Part IV - GAGWTA

[ThistleMae]

Hi, who is LMP? I'm new here, so want to catch up and be supportive as well. I had a great weekend, only thought about dying a couple times, and let that go pretty quick. Love the photo's Tuffcookie! Here is one of my babies.

 

[Pea-n-Me]

Hi, who is LMP? I'm new here, so want to catch up and be supportive as well. I had a great weekend, only thought about dying a couple times, and let that go pretty quick. Love the photo's Tuffcookie! Here is one of my babies.
View attachment 244084

Ha! Love the cat! What is his or her name? Glad you had a good weekend! LMP is short for lovemarypoppins. She is a regular poster here, having had thyroid cancer (which she often writes as thy) and as she says, "we adopted her". (We welcome anyone who is dealing with cancer themselves or in a relative or loved one, etc.) Unfortunately, recently she had a recurrence and is battling that right now. She had a procedure the other day. We're still waiting to hear how it went and how she's doing.

 

[Feralpeg]

LMP, Thinking of you!

 

[ThistleMae]

Best wishes and thoughts to LMP! The cat is Pumpkin. I also have Cinderella and Disney...go figure. Been going to PT 2x a week for Achilles tendonitis and still recovering from knee replacement. So many appointments to deal with, never mind the thought of another surgery for a hysterectomy, how will I ever fit it into my busy schedule...LOL! Okay here is Cinderella and Disney. Cinderella is the mother of Disney and Pumpkin.

 

[luvmarypoppins]

Greetings everyone, I am back from the surgical ordeal

Peg - how was your gi appt? I hope you get the answers that you need and will feel better soon

ThistleMae - welcome. I am sure we all have those kind of thoughts. I did but then again I almost did die during my last operation, well the lst one for cancer I had. I dont obsess on it and I am just blessed for each day God gives me. I do like to plan to but I have thrown most of that out the window these days, lol. I also had some bleeding and wondered what it what, scared the heck out of me. This was after my lst surgery. Went to the gyn had the internal sonogram and check up. She said sometimes our bodies just do this as we get older. No explanation other than that.

Well I am sure you are all wondering what happened to me and those who know me know it will never be the run of the mill easy peasy kind of surgery stuff with me, but oh how one day I just wish it would be. I know that will just never happen though. We got a hotel which was hard enough as ds1 decided to come along. So we found a place in Murray Hill that had 2 queen beds and gave a nice discount for the hospital with a code they gave us. They ubered there. We left our house at 5 am and got there before 7.

I was told the surgery would be 3 hours. It turned into 4. This surgeon takes no time whatsoever to talk to you as I said before. I guess that is just what the top NYC cancer surgeons do. They are a hot commodity for patients. They didnt even know if I would get a bed which I finally did. The OR is so small compared to out here. I felt like clowns in a clown car. I counted 8 people in the room and then they said they were calling in another surgeon to put an arterial line in me, so that would make it 9. Told me I would wake up with the cpap machine, fine. When I woke up I had a terrible pain in my R arm. No one is concerned about this but everyone is concerned about a giant red mark that looks like road rash on my L shoulder. Later found out the next day surgeon said he did this to me, something about electrical grounding. I think this has to do with the laryngeal nerve monitoring box they use during surgery. Finally got a room and its on the 13th floor., Yes this was a bad sign. lol. The floor is shared with mothers and babies. My roomate is allowed to have her mom sleep over but dh cannot as he is a male and that is the rules. So my roomate stays up till like 4 am watching tv and I am hearing crying newborn babies and ds3 said he saw a little boy go out with a shirt that said last day of chemo. It was a very different floor. I basically had my own nurse but no one did anything about the pain in my arm by the IV. It was bruised and looking red.

Finally the resident comes in takes out my drain and staples and put the surgical glue on to change the bandage. I finally see the surgeon. He practically runs in and out, sigh, sigh and more sigh. He says Oh you had alot of scar tissue and it took me a long time to fix your veins and arteries that were all in the wrong places. We will discuss this on Monday a week from now at the check up. I say, heah look at my arm. I think he almost went crazy. He said that is thrombo phlebitis and that iv is coming out right now. I think he must have yelled at the nurse but it was the previous ones fault. So now I have a week of anitibiotics, warm compresses three times a day, have to keep my arm elevated and also that electrical burn type thing on my shoulder. That does not hurt but looks terrible. Then not to mention my neck being sore and weak. I try not to take the percocet unless necessary. The food there was like gourmet stuff, I guess that is how they do it in NYC. Too bad I couldnt really eat much of it because I couldnt swallow well and my voice if finally coming back too so that is good.

So Monday we will go back to the surgeon leaving at 5 am for a 9 am appt. Hopefully he will spend more time with us and go over the path report. I know he was doing surgery on sat. because he had surgical scrubs on and not his usual armani suit lol.

GAGWTA. Hope everyone is doing ok.

 

[Tuffcookie]

Maryann, I have been frantically checking in on the DIS for an update. I am so glad you are well enought to give us an update! Prayers that your follow-up goes well.

TC

 

[Pea-n-Me]

Greetings everyone, I am back from the surgical ordeal

Peg - how was your gi appt? I hope you get the answers that you need and will feel better soon

ThistleMae - welcome. I am sure we all have those kind of thoughts. I did but then again I almost did die during my last operation, well the lst one for cancer I had. I dont obsess on it and I am just blessed for each day God gives me. I do like to plan to but I have thrown most of that out the window these days, lol. I also had some bleeding and wondered what it what, scared the heck out of me. This was after my lst surgery. Went to the gyn had the internal sonogram and check up. She said sometimes our bodies just do this as we get older. No explanation other than that.

Well I am sure you are all wondering what happened to me and those who know me know it will never be the run of the mill easy peasy kind of surgery stuff with me, but oh how one day I just wish it would be. I know that will just never happen though. We got a hotel which was hard enough as ds1 decided to come along. So we found a place in Murray Hill that had 2 queen beds and gave a nice discount for the hospital with a code they gave us. They ubered there. We left our house at 5 am and got there before 7.

I was told the surgery would be 3 hours. It turned into 4. This surgeon takes no time whatsoever to talk to you as I said before. I guess that is just what the top NYC cancer surgeons do. They are a hot commodity for patients. They didnt even know if I would get a bed which I finally did. The OR is so small compared to out here. I felt like clowns in a clown car. I counted 8 people in the room and then they said they were calling in another surgeon to put an arterial line in me, so that would make it 9. Told me I would wake up with the cpap machine, fine. When I woke up I had a terrible pain in my R arm. No one is concerned about this but everyone is concerned about a giant red mark that looks like road rash on my L shoulder. Later found out the next day surgeon said he did this to me, something about electrical grounding. I think this has to do with the laryngeal nerve monitoring box they use during surgery. Finally got a room and its on the 13th floor., Yes this was a bad sign. lol. The floor is shared with mothers and babies. My roomate is allowed to have her mom sleep over but dh cannot as he is a male and that is the rules. So my roomate stays up till like 4 am watching tv and I am hearing crying newborn babies and ds3 said he saw a little boy go out with a shirt that said last day of chemo. It was a very different floor. I basically had my own nurse but no one did anything about the pain in my arm by the IV. It was bruised and looking red.

Finally the resident comes in takes out my drain and staples and put the surgical glue on to change the bandage. I finally see the surgeon. He practically runs in and out, sigh, sigh and more sigh. He says Oh you had alot of scar tissue and it took me a long time to fix your veins and arteries that were all in the wrong places. We will discuss this on Monday a week from now at the check up. I say, heah look at my arm. I think he almost went crazy. He said that is thrombo phlebitis and that iv is coming out right now. I think he must have yelled at the nurse but it was the previous ones fault. So now I have a week of anitibiotics, warm compresses three times a day, have to keep my arm elevated and also that electrical burn type thing on my shoulder. That does not hurt but looks terrible. Then not to mention my neck being sore and weak. I try not to take the percocet unless necessary. The food there was like gourmet stuff, I guess that is how they do it in NYC. Too bad I couldnt really eat much of it because I couldnt swallow well and my voice if finally coming back too so that is good.

So Monday we will go back to the surgeon leaving at 5 am for a 9 am appt. Hopefully he will spend more time with us and go over the path report. I know he was doing surgery on sat. because he had surgical scrubs on and not his usual armani suit lol.

GAGWTA. Hope everyone is doing ok.

Glad you made it through! Sounds pretty typical for a major urban teaching hospital! Hopefully it was all worth it and the surgeon got and fixed everything. And at least you didn't nearly die during this one!

 

[Feralpeg]

LMP, So glad to hear from you! Sounds like things went pretty well...at least, for you! lol. When I had my chest wall resection, I didn't see the surgeon again until my follow up appointment. They seem to be very elusive types.

I'm having an endoscopy on Friday. The doctor suspects scar tissue in my esophogus due to my radiation treatments. If that turns out to be the case, he will use a balloon to open it right then and there. Hopefully, that's all it is. Week after next, I'm having basil cell skin cancer removed from my nose! The fun just never stops!

Hang in there, LMP. You are, as always, in my prayers!

 

[rajak73]

LMP: Glad everything went well, well as good as can be. Hopefully the surgeon will spend more time with you at your follow-up appointment. That we can be thankful for here, the surgeon and onocologist never rushed us or hurried at any time during appointments or otherwise. Keeping you in our prayers.

ThistleMae: This is a great place with people that a ton of information.

 

[ThistleMae]

Greetings everyone, I am back from the surgical ordeal

Peg - how was your gi appt? I hope you get the answers that you need and will feel better soon

ThistleMae - welcome. I am sure we all have those kind of thoughts. I did but then again I almost did die during my last operation, well the lst one for cancer I had. I dont obsess on it and I am just blessed for each day God gives me. I do like to plan to but I have thrown most of that out the window these days, lol. I also had some bleeding and wondered what it what, scared the heck out of me. This was after my lst surgery. Went to the gyn had the internal sonogram and check up. She said sometimes our bodies just do this as we get older. No explanation other than that.

Well I am sure you are all wondering what happened to me and those who know me know it will never be the run of the mill easy peasy kind of surgery stuff with me, but oh how one day I just wish it would be. I know that will just never happen though. We got a hotel which was hard enough as ds1 decided to come along. So we found a place in Murray Hill that had 2 queen beds and gave a nice discount for the hospital with a code they gave us. They ubered there. We left our house at 5 am and got there before 7.

I was told the surgery would be 3 hours. It turned into 4. This surgeon takes no time whatsoever to talk to you as I said before. I guess that is just what the top NYC cancer surgeons do. They are a hot commodity for patients. They didnt even know if I would get a bed which I finally did. The OR is so small compared to out here. I felt like clowns in a clown car. I counted 8 people in the room and then they said they were calling in another surgeon to put an arterial line in me, so that would make it 9. Told me I would wake up with the cpap machine, fine. When I woke up I had a terrible pain in my R arm. No one is concerned about this but everyone is concerned about a giant red mark that looks like road rash on my L shoulder. Later found out the next day surgeon said he did this to me, something about electrical grounding. I think this has to do with the laryngeal nerve monitoring box they use during surgery. Finally got a room and its on the 13th floor., Yes this was a bad sign. lol. The floor is shared with mothers and babies. My roomate is allowed to have her mom sleep over but dh cannot as he is a male and that is the rules. So my roomate stays up till like 4 am watching tv and I am hearing crying newborn babies and ds3 said he saw a little boy go out with a shirt that said last day of chemo. It was a very different floor. I basically had my own nurse but no one did anything about the pain in my arm by the IV. It was bruised and looking red.

Finally the resident comes in takes out my drain and staples and put the surgical glue on to change the bandage. I finally see the surgeon. He practically runs in and out, sigh, sigh and more sigh. He says Oh you had alot of scar tissue and it took me a long time to fix your veins and arteries that were all in the wrong places. We will discuss this on Monday a week from now at the check up. I say, heah look at my arm. I think he almost went crazy. He said that is thrombo phlebitis and that iv is coming out right now. I think he must have yelled at the nurse but it was the previous ones fault. So now I have a week of anitibiotics, warm compresses three times a day, have to keep my arm elevated and also that electrical burn type thing on my shoulder. That does not hurt but looks terrible. Then not to mention my neck being sore and weak. I try not to take the percocet unless necessary. The food there was like gourmet stuff, I guess that is how they do it in NYC. Too bad I couldnt really eat much of it because I couldnt swallow well and my voice if finally coming back too so that is good.

So Monday we will go back to the surgeon leaving at 5 am for a 9 am appt. Hopefully he will spend more time with us and go over the path report. I know he was doing surgery on sat. because he had surgical scrubs on and not his usual armani suit lol.

GAGWTA. Hope everyone is doing ok.

Thanks for the warm welcome! OMG...what an adventure! I hear you about the docs...they run in and out. On an office visit I had with my orthopedic doc, the assistant comes in first and basically says...ask me as many questions as you can so the surgeon can just check in to say hello...LOL! He called it something like "assembly line surgeries." I hope you recover quickly from the "electrocution!" So glad the doc caught it though....at least he was concerned. Have a speedy recovery...so glad to find some friends in here.

 

[kittylady1972]

LMP: Glad surgery is over but sorry about them not talking to you more about it. Hope you get some more information soon.

ThistleMae: Welcome...love the kitties! We have four of our own and a dog...plus 3 kids and a ton of fish. It's crazy! I know how hard it is to not think about our own mortality, especially with this ugly disease, but I try my best to remember that NONE of us are promised tomorrow...anything can happen...and I try to make the best of each day as much as I can. I have still cried more these last few months, since my mom's death from cancer and then two months later my own diagnosis...than probably the last few years combined.

Quick update for me...I've had so many doc appointments the last few weeks. Last week I met with a genetic specialist to discuss my particular genetic mutation and what it would mean for my treatment plans. So far, no changes are recommended for that other than more frequent follow-ups (every 6 months) but that's fine with me.

Then I met with my first oncologist, and of course based on the size of my tumor and the micromets in my lymph node the recommendation is chemotherapy next, to be followed by radiation and then endocrine therapy. This wasn't totally surprising, but it still caught me off guard and I was scheduled to start this week.

Lots of soul searching and crying since that time, and then I started looking into some options such as cold capping for hair preservation. I'm not a vain person by any means, but if I can keep at least some of my hair and prevent people from looking at me and feeling sorry for me...why not? Unfortunately a few electronic messages to my doctor and I learned they don't offer it there...but she gave me options of places that do in case I wanted to look into it. Therefore a search found a place right around the corner from my house DOES do cold capping...machine driven even...and so I decided to seek treatment there which meant meeting with another oncologist. Besides that, just having treatment closer to home would be easier for everybody and why not speak to somebody else about the treatment plan?

I was able to get an appointment yesterday with the new oncologist and I LOVED him. He spent so much time with me and DH and talked to us in depth about everything planned. There was the option to possibly avoid chemo by attempting to run OncotypeDX on me, but that test would take another 10 days for results and again no guarantees...and then my treatment would be pushed back even further and I'm anxious to get it over with as you can imagine. My other onco did not to OncotypeDX (I had asked about that also in a previous message) because at age 45 I'm still pre-menopausal and they mostly do it for post-menopausal women. In the end we decided to go through with the planned treatment and even this doc agreed it was a good choice and they will do cold caps as well...and I'm being fitted for mine on Monday. Hoping to kick treatment off next week, and another thing he discussed (which my other doc did not) was the idea of a port. I was hoping to avoid it, but after talking to him and realizing how easy it would be I've decided to go ahead with that as well and right now it's scheduled for next Thursday. Still waiting to get the actual infusion/chemo scheduled though. So that's where we are right now.

Amazingly having this extra time has just helped me cope with things a lot better and really be happy with my decision. I think it worked out well and I'm glad I took the time to do this.

It means cancelling an upcoming summer trip for sure and looking into some alternate things to do but that's okay. I'll get through this, I'm determined to do so.

 

[kittylady1972]

I'm doing the Dignicap. I am 5 days past my second dose of Taxotere/Cytoxan. I have hair but probably down to about 30%. I had very thick hair to begin wit. I am hoping it stops sooon otherwise the cost and the pain and discomfort will be for nothing

I was reading through the quotes previously and it looks like you and I are on the same current plan, but you are a bit ahead of me. I'm scheduled for T/C treatment to begin as soon as we get the scheduling done. My location also does Dignicap and I'm being fitted for that on Monday. It sounded like your experience wasn't the best overall so I'm wondering about it. I know I'll be paying OOP quite a bit per treatment (and 4 treatments total) and I'm just hoping to keep SOME hair is possible. I figured even 50% or so was better than nothing but I don't have the thickest hair to start. I'm hoping I can handle the cold and discomfort part too.

 

[TheIncredibles!]

I was reading through the quotes previously and it looks like you and I are on the same current plan, but you are a bit ahead of me. I'm scheduled for T/C treatment to begin as soon as we get the scheduling done. My location also does Dignicap and I'm being fitted for that on Monday. It sounded like your experience wasn't the best overall so I'm wondering about it. I know I'll be paying OOP quite a bit per treatment (and 4 treatments total) and I'm just hoping to keep SOME hair is possible. I figured even 50% or so was better than nothing but I don't have the thickest hair to start. I'm hoping I can handle the cold and discomfort part too.

I am done now with chemo. Overall I've kept the 30% of my hair and it was thick to begin with. I do have a massive bald spot that goes from ear to ear over my head with the biggest bald spot being right on top. With toppik and pulling my hair back you can't really notice it. I've accepted this and even though I wish I retained my hair a little more evenly, I'd still do it again.

I won't lie, the cap is damn cold at first. After about thirty minutes though you start to go numb. As your hair thins the initial minutes get harder and harder. Lamaze breathe through it, it does get better. You will be cold the entire time. Your hair is wet, my shirt got wet too etc so you need to be prepared. I wore clingy yoga pants, a shirt with loose sleeves so they could access my picc line, then I had my cardigan sweater that I laid on myself, two blankets, a shawl around my neck like a scarf and gloves with a fingertip cut off so I could use my iPad. The chair was heated and I was still cold. The cold saps your energy a bit too.

I knew going in that the fit wasn't the best up top. They tried to make it better by using washcloths in between the two caps but obviously that didn't work. Just be aware of how they're fitting you and if you end up like me know you'll be ok. I'll try and message you pictures of my bald spot and how well it's hidden with toppik and just pulling my hair to a bun

Bets of luck. If you have any questions just let me know.

 

[low-key]

I I'm just hoping to keep SOME hair is possible. I figured even 50% or so was better than nothing but I don't have the thickest hair to start. I'm hoping I can handle the cold and discomfort part too.

I am done now with chemo. Overall I've kept the 30% of my hair and it was thick to begin with.

I had 6 rounds of what they called a serious chemo, after 2nd one I was bald, on the last one (6th) I lost my already thinned out eye brows, but everything come back, me hair is even thicker then before



keep showing us how to fight LMP

 

[kittylady1972]

I am done now with chemo. Overall I've kept the 30% of my hair and it was thick to begin with. I do have a massive bald spot that goes from ear to ear over my head with the biggest bald spot being right on top. With toppik and pulling my hair back you can't really notice it. I've accepted this and even though I wish I retained my hair a little more evenly, I'd still do it again.

I won't lie, the cap is damn cold at first. After about thirty minutes though you start to go numb. As your hair thins the initial minutes get harder and harder. Lamaze breathe through it, it does get better. You will be cold the entire time. Your hair is wet, my shirt got wet too etc so you need to be prepared. I wore clingy yoga pants, a shirt with loose sleeves so they could access my picc line, then I had my cardigan sweater that I laid on myself, two blankets, a shawl around my neck like a scarf and gloves with a fingertip cut off so I could use my iPad. The chair was heated and I was still cold. The cold saps your energy a bit too.

I knew going in that the fit wasn't the best up top. They tried to make it better by using washcloths in between the two caps but obviously that didn't work. Just be aware of how they're fitting you and if you end up like me know you'll be ok. I'll try and message you pictures of my bald spot and how well it's hidden with toppik and just pulling my hair to a bun

Bets of luck. If you have any questions just let me know.

Thanks so much. I'm cold by nature anyway...so I'll be sure to pack extra layers. I appreciate the tips and thanks for the photos too.

I had 6 rounds of what they called a serious chemo, after 2nd one I was bald, on the last one (6th) I lost my already thinned out eye brows, but everything come back, me hair is even thicker then before

keep showing us how to fight LMP

I love hearing these stories of how things have returned for people better than ever...thank you!

 

[luvmarypoppins]

Peg - how did your endoscopy go?? Hope you get some answers to the issues you are having to deal with.

Mrs. Incredible - glad you are done with the chemo. You are a real trooper to do that cold cap thing I am always cold anyway, joys of thy ca.

kittylady - glad you found an oncologist who you like. Hope the port placement goes well for you. Sounds like things are going forward for you. Prayers for you.

Well we survived another visit with the surgeon. I think going into the city is taking a toll on dh. He came home and took a little nap before going to work for a while. Hopefully my next visit in July will be the last one.

I shake my head with this surgeon. Honestly just because you go to a top hospital in NYC and see a top surgeon it doesnt mean they care about you etc. I think he just sees us as people to cut up. We were there less than 45 mins. and most of that was sitting in the room waiting for him to show up. When we left there were another 6 people waiting for him. sigh. I felt like it is a surgical cancer mill in one way. But he does have good surgical skills and that is what I need for sure so I put up with it. I would probably go to him again because its a much better alternative than Dr. Who Almost Killed Me.

He took the bandage off and said I am having the choking and pulling/tightening issues because its swollen and healing and will take a while. He went over scar care. I said I am not one of those vain people. Hmm, doesnt he see my neck from before. lol. He went over the path report. He said out of 18 lymph nodes 4 were cancerous. The biggest one was 3 centimeters. The path report said 3 mm and he said, oh thats wrong. Hmm no one proofreads these things. I asked him about the rare variant . He said its does not matter. But he said - if you want me to ask them to look at the lining for the variant I can do that. I thought to myself, shouldnt you do that anyways. This is suppose to be a top cancer place, sigh, sigh, and more sigh. He says the aggressive variant does not matter. Its metastatic. He said the one good thing was that it did not go outside the lymph nodes which is good in my cancer. He said it has a 5-10% chance of coming back again. Yup that will probably be me. He didnt even mention that. I had to ask.

I made him look at my arm and he said the anesthesia people caused that and it looked like a rope before but it is healing very well now. Good.

I wanted to shake his hand and say thank you but he seemed to back away so I didnt do anything. Strange.

After all of this dh said we should start planning that trip to food and wine in october, what a hubs!!

So hopefully July will be the last visit. I forgot to ask him about the twisted veins and arteries he had to fix which he said he would talk about but did not, so I will ask about that next time.

GAGWTA

 

[ThistleMae]

LMP: Glad surgery is over but sorry about them not talking to you more about it. Hope you get some more information soon.

ThistleMae: Welcome...love the kitties! We have four of our own and a dog...plus 3 kids and a ton of fish. It's crazy! I know how hard it is to not think about our own mortality, especially with this ugly disease, but I try my best to remember that NONE of us are promised tomorrow...anything can happen...and I try to make the best of each day as much as I can. I have still cried more these last few months, since my mom's death from cancer and then two months later my own diagnosis...than probably the last few years combined.

Quick update for me...I've had so many doc appointments the last few weeks. Last week I met with a genetic specialist to discuss my particular genetic mutation and what it would mean for my treatment plans. So far, no changes are recommended for that other than more frequent follow-ups (every 6 months) but that's fine with me.

Then I met with my first oncologist, and of course based on the size of my tumor and the micromets in my lymph node the recommendation is chemotherapy next, to be followed by radiation and then endocrine therapy. This wasn't totally surprising, but it still caught me off guard and I was scheduled to start this week.

Lots of soul searching and crying since that time, and then I started looking into some options such as cold capping for hair preservation. I'm not a vain person by any means, but if I can keep at least some of my hair and prevent people from looking at me and feeling sorry for me...why not? Unfortunately a few electronic messages to my doctor and I learned they don't offer it there...but she gave me options of places that do in case I wanted to look into it. Therefore a search found a place right around the corner from my house DOES do cold capping...machine driven even...and so I decided to seek treatment there which meant meeting with another oncologist. Besides that, just having treatment closer to home would be easier for everybody and why not speak to somebody else about the treatment plan?

I was able to get an appointment yesterday with the new oncologist and I LOVED him. He spent so much time with me and DH and talked to us in depth about everything planned. There was the option to possibly avoid chemo by attempting to run OncotypeDX on me, but that test would take another 10 days for results and again no guarantees...and then my treatment would be pushed back even further and I'm anxious to get it over with as you can imagine. My other onco did not to OncotypeDX (I had asked about that also in a previous message) because at age 45 I'm still pre-menopausal and they mostly do it for post-menopausal women. In the end we decided to go through with the planned treatment and even this doc agreed it was a good choice and they will do cold caps as well...and I'm being fitted for mine on Monday. Hoping to kick treatment off next week, and another thing he discussed (which my other doc did not) was the idea of a port. I was hoping to avoid it, but after talking to him and realizing how easy it would be I've decided to go ahead with that as well and right now it's scheduled for next Thursday. Still waiting to get the actual infusion/chemo scheduled though. So that's where we are right now.

Amazingly having this extra time has just helped me cope with things a lot better and really be happy with my decision. I think it worked out well and I'm glad I took the time to do this.

It means cancelling an upcoming summer trip for sure and looking into some alternate things to do but that's okay. I'll get through this, I'm determined to do so.

Thank you for sharing your progress with us...it's so appreciated. I've never heard of the cold cap thing...so the info in here is so valuable. I think the most important message you send is that you are happy with your decision. There is so much advice out there and different choices, being satisfied that the choice you make is right for you is so important. Keep us posted.

 

[kittylady1972]

LMP -Glad things seem to have gone okay with the surgeon and sorry he seems to impersonal. I think that's the way with many surgeons...not being known for bedside manor. I'm continuing to think all positive thoughts for you and you avoid that 5-10% for sure. EXCITING that you can plan for F&W for October...we plan to be there too! In fact, based on my current calculations, it may fall during my radiation treatment so I'm hoping to squeeze in one radiation session the day we leave (a Wednesday) and then will try to fly home that Monday so I can do another one on the day I return.

ThistleMae - Glad I could share and people can get something out of what I'm going through. Yes I've done a lot of reading about cold capping and my particular center is one of the few to have the DigniCap system. I'll always question whatever decision I make I think about my treatment, that's the scary part, but I'm doing my best.

So my current update...went in yesterday for port install. It was a LOOOOOOOONNG day as I was scheduled for a 12:30pm procedure (so couldn't eat since the night before) but ended up being pushed back due to an emergency surgery for my surgeon so my actual procedure took place at 5:30pm. They gave me the option to return another day, but I was already there, already prepped, they had already blew out one of my left veins in the attempt at getting my IV in (thus solidifying my decision to have a port done) and we already had sooo much going on that day and currently that we were juggling. So I waited it out...and today it feels like somebody punched me in the left side of my chest a few times! I'm taking tylenol for the pain for right now but I think my plans of playing tennis tomorrow morning need to be changed.

I met with the nurse on Monday and walked through the infusion center...a bit overwhelming to say the least. However I did really love the nurse and she was just so down to earth and up front with us on everything. She even introduced us to a woman who had just completed her 3rd treatment and was using DigniCap...and she looked great. That woman could not have been more encouraging to me. Since I'll be tethered to this machine I'll have my own room for my treatment rather than sharing spaces with others, which is kinda nice, and of course I'm paying for each session which won't be cheap but it's a price I'm willing to pay. So the visit put me a little more at ease about things overall and once again I have tons more information about everything.

Anyway let's hope the port thing works out well and stops bothering me soon. At least the surgeon for that was also very nice and extremely apologetic about the delay, he had a very busy day.

Sadly as I'm working on healing from this and beginning the next phase of my treatment, we will most likely be saying goodbye to my MIL within the next week who has been battling kidney cancer for a few years. She has put up a big fight, much longer than we thought she would, and there were times when we had counted her out that she would bounce back. This time, however, she has declined and there is no hope of her bouncing back. This weekend she will be brought home from the rehab/nursing home where she was sent last weekend with hopes that they could rehab her a little bit. They have indicated that it is not possible, so hospice will come in to help get her settled out home. Since she has no kidneys, and is on dialysis 3 times a week, now that she is unable to move at all on her own there will be no way for my FIL to get her to/from dialysis any longer. It will just be a matter of time before nature takes it's course, one that has probably been artificially extended for quite a while with dialysis, so I've already made plans to have a backup friend come sit with me during my first chemo session (she is a longtime friend and also a nurse) in case my husband needs to be with his dad and his sister to support them in case his mom starts to decline even more. I would hate for him to not be able to go to his mom's side because he is sitting with me during chemo.

 

[Pea-n-Me]

That is sad about your MIL, kittlylady. I'm glad you like the center and your port procedure went well (aside from the discomfort).

LMP and everyone else, how are you doing?

 

[ThistleMae]

LMP -Glad things seem to have gone okay with the surgeon and sorry he seems to impersonal. I think that's the way with many surgeons...not being known for bedside manor. I'm continuing to think all positive thoughts for you and you avoid that 5-10% for sure. EXCITING that you can plan for F&W for October...we plan to be there too! In fact, based on my current calculations, it may fall during my radiation treatment so I'm hoping to squeeze in one radiation session the day we leave (a Wednesday) and then will try to fly home that Monday so I can do another one on the day I return.

ThistleMae - Glad I could share and people can get something out of what I'm going through. Yes I've done a lot of reading about cold capping and my particular center is one of the few to have the DigniCap system. I'll always question whatever decision I make I think about my treatment, that's the scary part, but I'm doing my best.

So my current update...went in yesterday for port install. It was a LOOOOOOOONNG day as I was scheduled for a 12:30pm procedure (so couldn't eat since the night before) but ended up being pushed back due to an emergency surgery for my surgeon so my actual procedure took place at 5:30pm. They gave me the option to return another day, but I was already there, already prepped, they had already blew out one of my left veins in the attempt at getting my IV in (thus solidifying my decision to have a port done) and we already had sooo much going on that day and currently that we were juggling. So I waited it out...and today it feels like somebody punched me in the left side of my chest a few times! I'm taking tylenol for the pain for right now but I think my plans of playing tennis tomorrow morning need to be changed.

I met with the nurse on Monday and walked through the infusion center...a bit overwhelming to say the least. However I did really love the nurse and she was just so down to earth and up front with us on everything. She even introduced us to a woman who had just completed her 3rd treatment and was using DigniCap...and she looked great. That woman could not have been more encouraging to me. Since I'll be tethered to this machine I'll have my own room for my treatment rather than sharing spaces with others, which is kinda nice, and of course I'm paying for each session which won't be cheap but it's a price I'm willing to pay. So the visit put me a little more at ease about things overall and once again I have tons more information about everything.

Anyway let's hope the port thing works out well and stops bothering me soon. At least the surgeon for that was also very nice and extremely apologetic about the delay, he had a very busy day.

Sadly as I'm working on healing from this and beginning the next phase of my treatment, we will most likely be saying goodbye to my MIL within the next week who has been battling kidney cancer for a few years. She has put up a big fight, much longer than we thought she would, and there were times when we had counted her out that she would bounce back. This time, however, she has declined and there is no hope of her bouncing back. This weekend she will be brought home from the rehab/nursing home where she was sent last weekend with hopes that they could rehab her a little bit. They have indicated that it is not possible, so hospice will come in to help get her settled out home. Since she has no kidneys, and is on dialysis 3 times a week, now that she is unable to move at all on her own there will be no way for my FIL to get her to/from dialysis any longer. It will just be a matter of time before nature takes it's course, one that has probably been artificially extended for quite a while with dialysis, so I've already made plans to have a backup friend come sit with me during my first chemo session (she is a longtime friend and also a nurse) in case my husband needs to be with his dad and his sister to support them in case his mom starts to decline even more. I would hate for him to not be able to go to his mom's side because he is sitting with me during chemo.

So sorry about your MIL....this last part of the process can be really hard. We stayed with my BIL through his last days, and it was so hard on my sister and the kids. They all decided that being in the hospital might be the way to go. I thought about this for a long time and although I would choose to die at home, if it's easier for the kids, I'll go to the hospital. I know this is all part of life but it never feels like there is enough time. No matter what...I'll stay positive, even if the news is challenging. I go to Disney in 29 days and I'm so looking forward to this special time with my cousin and her husband...first vacation we have ever done together and we are very close. I guess there is always something to look forward to, even in the midst of all the chaos, but choosing to stay strong can also be a challenge. My sister chose to keep information from her husband, afraid that if she told him everything he'd give up hope. But...he knew things were not going well and he couldn't talk about it to anyone because everyone one would say, don't say that, you can beat this. I believe there comes a time when the plain truth is a relief...and acceptance can bring a sort of peace.