Another Update since I went to CTCA Atlanta

misstaylor84
misstaylor84 Member Posts: 73 Member
edited February 2022 in Uterine/Endometrial Cancer #1

On November 10 and 11th I had my first appointment at the Cancer Treatment Center of America in Atlanta. This experience has been unlike any other hospital I have been to. We drove but they paid for our hotel stay and paid us mileage. I had a ton of blood pulled and they checked just about everything I think lol. The second day I learned about the other free services offered like naturopath doctors and nutritionists. My new GynOncologist is wonderful. Her first treatment option is NOT a hysterectomy but that may still be the only option, depending on what this next D&C shows. If the cancer is into the uterine wall she said a hysterectomy is my only option. 

I am flying out Sunday with my husband (for free) and my D&C will be Monday, then flying home Tuesday. The only complaint I have so far is that he can't go back to pre-op or recovery witrh me. I will be in pre-op an hour and last time at the other hospital he was there in recovery, which was nice because I'd rather he help me get dressed and go to the bathroom. But it is what it is.

CTCA so far has been amazing. Everything they do is with the patient's comfort and safety in mind. They handle the hotel, flight, etc. Because of the insurance we have we will not receive a single bill until May 2022. From my first D&C and first Oncologist I owe over $5000 so this is a godsend. Everybody you interact with is super nice and helpful. The other patients there recognize a new patient and I was approached by several other patients at the hotel during breakfast and they all just reassured me and told me I was in the best hands there. 

They have a shuttle service that picks you up at the airport, your hotel, takes you wherever you need to go. They have support groups too and the lady who volunteers there made sure we knew we were welcome anytime. It really feels special there.

Back at home I am still dealing with a lot of anger and grief and sadness. I need to start therapy but would like to find a therapist who deals specifically with this sort of thing. I am under a lot of stress since we are still living at my parent's house since our house is in no shape to live in and my mom's health has gone downhill so she needs more help with my dad who had a stroke last year and is blind. I have been wanting to find a job but nobody will hire me since I may have to miss quite a bit of work and my husband is set on me not working and just focusing on my health. He has a lot on his plate too and our bills are getting behind. I feel useless and like I'm just adding to his stress but he tells me he's fine and he can handle it. 2 days after my D&C he will be back to work and I will have the dogs, horses, chickens, etc to take care of plus running to the store for my mom and helping dad. I would much rather he stay home for a couple extra days but he has to work. I try hard not to take my stress out on him and when I feel like I'm in a bad mood I just distance myself from everyone until it passes. I have no outlet for my frustration and stress. 

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Comments

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #2
    I ran to your post!

    I'm so glad to learn all this news, and I hope to share your observation of the excellence of CTCA with my dear friend, who could go there. Sending you a big hug, and you sure sound like you are taking excellent care of yourself. I'm in awe of you. Thank you for coming back and sharing. I worry about you when you aren't here for a while.

    Deb 2

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    oh misstaylor, you have so

    oh misstaylor, you have so much going on in your world, and while I am so happy to hear that you have landed at CTCA that is working out for you, I hope there is some peace as well.  Hugs dear one.

  • yetti
    yetti Member Posts: 82 Member
    edited November 2021 #4
    CTCA. Is great ! I’ve been a patient since 4/2019

    Hello again Miss Taylor, I'm happy to read that you were able to go to CTCA!  I was just  there in Oct 20, 2021! Im sure we have the same Gyn oncologist Natalie. Godbee. !  Did you like her ?  I think she's great !  So is CTCA. Where did you and hubby stay? I stayed at Springhill suites. The best hotel is the hotel at the CTCA facility. Hopefully to reopen in January. I always request. There! I go back in January 2022 I'm glad you liked it there ! Please update us on your d&c. ???? many prayers for no hysterectomy!  Do you live in GA. Im from fla !   Sincerely Yetti. 

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    Deb, your friend is going to love it there! I can't really describe how that place feels. It really doesn't feel like a hospital and you get such a sense of family and community there. It really is a place of hope and people who really truly care. When I stay away for a while it's usually just because I have nothing to update lol. Thank you for thinking about me and I hope your cancer journey is going ok. Have you looked into CTCA for yourself?

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    My doctor is Dr. Ruchi Garg and she is fantastic. She's the program director for the GynOncology department. We have stayed at Holiday Inn and the last time we stayed at the Extended Stay. We prefer Holiday Inn because their breakfast is actually really good and the rooms are better but the bed at Extended Stay was more comfy. I live in northeast Arkansas. Last time we decided to just fly and that process went off without a hitch. Our driver texted and let us know where she was and even when we needed a driver at 5am they had no issue arranging that even though they normally don't start until 6. They definitely go above and beyond when it comes to taking care of their patients.

    I was scheduled to go for my 2 week follow up appointment on the 15th but they changed it to just a telehealth call so I'm hoping/guessing that means good news?? They added the biopsy findings to my online chart but of course I don't understand everything but it sounds like my cancer IS responding to the megesterol and it said something about no myometrial invasion or lymphatic invasion, so good news there.

    I just can't get over the difference in how I feel after this procedure vs how I felt after the first one at the other hospital. I think my quality of care here at CTCA is so much better. I wasn't able to do hardly anything for 2 weeks with the first, and I developed an infection that the doctor seemed to think was no big deal. Dr. Garg told me if I notice any sign of infection to immediately call. So far I'm good. Hubby doesn't let me pick up heavy things or do too much lol.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member

    Oh, MissTaylor....it's complicated, as most things in life are. First, thanks for replying! I just want to say that I do know that for people dealing with cancer / issues related to cancer, if the setting and the doctors are excellent, it's tremendously helpful. You sound completely different...you have hope.

    My friend's sister lives right next to the CCTA facility in AZ, but my friend is toughing it out at a "less than ideal" facility in her rural community, because her friend has been renting her a room, and she needs a place to live, and her friend needs help. It's kind of like two sides of a three-legged stool trying to hold things up. There's more to that story, but it's not mine to tell.

    I am--at this time--in the monitor-ever-two-months stage, so I'm going to sit tight and see how things go. I am 22 m. away from my hospital facility in Oregon, a large teaching hospital, so I'm okay for now! Take care <3

  • yetti
    yetti Member Posts: 82 Member

    Dear Miss Taylor. What facility of CTCA did you go to ? I went to Newnan Georgia I’ve never heard of drRuchi Garg. I like Natalie Godbee. But she’s not the warmest dr ! Hope fully results are what your hoping for, sincerely Yetti

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    I also go to Newnan! I really like it. Hopefully my next appointment won't be until January. Dr. Garg is new there, I think she's only been there a few months.

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    Yesterday I had my Telehealth appointment and she said that something is working on the cancer cells so that's good. But she said she removed several small polyps that tested positive for cancer. She reviewed my first MRI that was taken 8-19 and she said that one looked like it was going into the wall of the uterus, but she decided I should have another MRI to see if it's shrunk. I reminded her that the first MRI had only been done a couple weeks after I was first diagnosed and put on Megace. The fact that the meds are working on the cancerous cells makes me want to wait 3 more months and get another D&C and another MRI but if it still shows the same depth I know she's going to try to push me to get the hysterectomy. I understand the risk of it spreading to lymph nodes but if it's working I also am willing to give it another 3 months.

    With my living situation it will be next to impossible to do things while I'm recovering from a hysterectomy. My husband is a truck driver and can't be there to help me. My dad had a stroke last year and is completely blind so he needs help with everything and now my mom is having health issues and can't really take care of my dad because she can barely walk or lift anything. I'm the only one who drives anywhere for them and I have to pick up 40-50lb bags of dog food, I have horses and dogs and chickens to care for. I literally have nobody to help me. I'm not worried about the surgery itself, just the recovery. 6 weeks is a long time to be down. I won't lose my ovaries or many lymph nodes either, unlike the first oncologist I saw who wanted to take most out from my pelvic region and take my ovaries. Dr Garg is a very good doctor and I trust her.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member

    Hey, great to see you <3 I am so glad that you really like and trust your doctor. It's so important with what you're going through. If you trust her, listen to her. Sometimes it makes sense to wait and get more information, but if she says it's "go time," I think I would probably listen at this point. We have a farm, and I found little tricky ways to deal with the 40 and 50 pound bags. I had workers load them, and then utilized gravity to let them fall into place in the garage. This was after the first few weeks. You will find a way to do what you need to do, and I know you are going to take good care of yourself. I am cheering you forward, no matter what! Take care, ok? Deb 2

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    Can you share how your hysterectomy went? I know it's a long recovery time but how bad was the pain in the first couple weeks? With just my D&C procedures, 2 weeks after it I still have sore, tender spots and if I accidentally leaned against the sink while doing dishes I sure felt it.

    We have big dogs, Great Danes, and a very hyper Pitbull and I'm worried about them pushing into me or smacking me in the abdomen or jumping up on me.

    There's so much in my daily life that I feel like I wouldn't be able to do after a hysterectomy but I don't have ways around it figured out yet lol. I'm the one who does the cleaning, feeding the animals, going to the store for groceries, etc.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited December 2021 #13

    I started having major abdominal surgeries related to my child-bearing issues when I was 37, so I have experience having an 'Open' abdominal surgery with inadequate pain meds (I was in Cambodia at the time). I can say that here in the States (and most developed countries), doctors and nurses do a superior job with taking care of pain issues. Regarding the tender spots, you will have those. I recommend as much as possible finding ways to avoid "leaning against the sink," and I'm that person who never, ever stops moving. If you're in pain, sit down.

    For you and your family:

    Load up on Progresso soups and ready-made or frozen meals, get extra pet foods asap and get them in place, get a community of local helpers to sign up to help you (the churches can be very helpful, even for non-members, if you approach them), work with husband to plan as much as possible around down times. Stock up on milk, bread, etc. for at least a week. I was driving within about ten days, by the way. I don't do well with my freedom being interfered with, and I will always choose a bit of discomfort over being able to drive. Hmmm, come to think of it, I quit taking pain pills on the third day after surgery so I could drive myself to my stepchildren's biological mother's memorial service thirty miles away.

    You may need to go stay with a family member or friend to give yourself a full two weeks of rest. You will not be able to care-provide for others for a few weeks, and let's face it: if you stall too long, things aren't going to get better. I always cared for my father, who was 240 pounds of neediness, but you will not be taking care of your people for at least a few weeks. Husband will need to make some plans to support the others.

    Dogs: I have two labs, more than 80 pounds each. The older one is thoughtful, the younger one is not! They were a concern the day I came home from the surgery. In and out the same day. My husband put them in the garage and I went straight to bed. I did not take care of the dogs or my husband much for the first few days. You just can't. It's your turn to be taken care of.

    Stupid cancer doesn't care about your obligations or timeline. If cancer were a houseguest, he would be the one tracking mud on your carpet, if you know what I mean.

    The pain from my DaVinci Laparoscopic surgery--not bad! I took pain pills for about a week, and then some over the counters. The incisions they made were a bit painful, but I used Aquaphor after some time on them. I have occasional pain, and you will. You can't have organs removed without dealing with some residual pain, but I'd rather be alive and deal with surgery recovery than let cancer run his merry course. He's a bad houseguest!

    I had my "big" surgery March 24th of this year, and I had radiation treatments (five total) in June and July. I'm an active person, but did deal with some major depression and anger issues, but that's emotional pain. I think it's as significant. I have found medications for depression and anxiety to be extremely helpful for me.

    Within six weeks of surgery, I was on the riding lawn mower (on the farm, like you), and pushing 50-pound bags of livestock grain out of a truck. I don't recommend you do too much of that, to be honest, but I did whatever I could to work without involving my core.

    Seriously, I'm so relieved I got it all done and over with---for now, at least. I'm getting checked every two months. You will find that they can't really give you all the information until the uterus is fully examined / biopsied. All the waiting and wondering is the worst part of all of this, in my experience. I think most women feel the same anxiety, and it is definitely helpful if you have a doctor you really like and trust.

    I have occasional twinges of pain, and some days feel a bit crampy, but your innards will resettle as your uterus and etc. are gone.

    It's very tolerable.

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    I'm already living with my parents, and brother, who never left home. Dad needs a lot of care and we just found out that my mom has a herniated disc and is causing her so much pain she can barely move around so me and my brother have to do quite a bit to help dad, but now he has a big wound on his foot and can barely get around and he doesn't ever drive, not even to the grocery store 2 miles down the road.

    My dogs are at our house, which is in such bad shape we can't live in it, so I drive the 15 miles every day to feed and water them. I'm going to have to continue doing that because nobody else will/can. Moving them to my parent's farm is not an option either. My husband is the only one who could help and he can't take that much time off because if he doesn't work we don't get a paycheck. If I have to have the surgery he will probably work for 3 weeks straight without home time so we can hopefully save a little so he can be home for a week, hopefully.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member

    You have your hands much too full, but I am impressed that you are starting to think about the "how." That's really going to be a challenge. I hope your brother can help you prepare and ease the burden a bit. I am sorry I don't live near! I would help you.

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    My brother doesn't help others unless they pay him. He doesn't do anything to even help my parents out so I'm not counting on him, plus we do not get along at all. Another long story there. I'll just say I'm about ready to move back into our house even with it being in terrible shape and no heat just to get away from him and how he treats our parents.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member

    Very sad. Maybe your parents should make him pay rent.

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    He doesn't work or have any money. It's a very rough situation for them.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member

    I'm sure it's extremely frustrating for you and your parents!

  • cmb
    cmb Member Posts: 1,001 Member

    On another cancer forum there was a woman who had moved to a rural area in Canada just before she was diagnosed with cancer. She didn't have any family or friends close by and she was worried about how she would care for her farm animals while she was in treatment.

    I don't know how her community found out about her situation (she never mentioned being a church member), but she later wrote that people she didn't even know had stepped in to help her when she wasn't able to keep up with the farm work and animals. She was really taken aback by the response and deeply grateful.

    So I just want to reiterate a comment that Harmanygroves made in an earlier comment about seeking help from others in your community. I know that it seems that you should be able to have help from within your family, but that's not your reality.

    I have volunteered for a rescue animal shelter for many years and I know there are several volunteers who have stepped in help care for other volunteers' animals when necessary. So even if you aren't associated with an animal shelter now, you could try reaching out to one in your community to see if they have volunteers who could help with your dogs while you're recovering from surgery.

    I know that most of us like to be self-sufficient, but that's not always possible.

  • misstaylor84
    misstaylor84 Member Posts: 73 Member

    Everything is very stressful right now. My next appointment is the 29th and we will get there the day before and stay one night in the hotel then head right out after my 1:30 appointment is over. Because he probably won't be able to pick up and deliver any loads that Thursday and Friday that means we won't have any money the following week. We have a car payment every week and sometimes we have to hold off and just do a double payment the next week but money is very tight all the time. Like this week I have $12 and I will have to decide if that's going to put gas in my car so I can drive to my house and feed and water the dogs or buy a cheap bag of dog food for them.

    My parents don't get their retirement or disability check until next month and they don't have enough to get any more groceries or pay a bill and this is the first Christmas they weren't able to buy a single gift. My husband wants to still buy gifts for everyone but I know we won't have any money left after my trip to Georgia and paying the car payment. Between my dad needing constant help and my mom not being able to help him it's very busy for me. I'm still having some pain and bleeding from my last D&C 3 weeks ago but I'm still doing 95% of their housework, getting their groceries, etc. It's looking like this may end up being a permanent situation :(