Aug 4, 2020
Thuốc sandostatin-0,1mg/ml điều trị bệnh dạ dày do nhiều nguyên khác nhau rất hiệu quả. Để đặt hàng vui lòng truy cập website https://tiemthuoc.org/ để được tư vấn
seen from Mexico
seen from Canada
seen from United States
seen from United States
seen from United Kingdom
seen from United States
seen from Saudi Arabia
seen from United States
seen from Mexico
seen from Italy
seen from Spain
seen from Netherlands
seen from Canada
seen from United States
seen from Nicaragua
seen from United States
seen from China
seen from Mexico
seen from Lithuania
seen from China
Thuốc sandostatin-0,1mg/ml điều trị bệnh dạ dày do nhiều nguyên khác nhau rất hiệu quả. Để đặt hàng vui lòng truy cập website https://tiemthuoc.org/ để được tư vấn
Trying to hold it together
Anxiety - The kind with mini panic attacks when you should be getting sleep while the baby is sleeping. - The kind where you find your entire body tense and have to focus intently on relaxing it, only to find it tense again 3 minutes later. Rinse and repeat for most of the night. - The kind that makes you kick yourself for not formalizing a medical directive or will and vow to do it as soon as you find a free day. - The kind that gives you nightmares about everything. The kind that makes you want to find a hole and hide in it until things pass. Why? - Flying with a four month old - who doesn't like to nap - for the first time - by myself - with a connection - to be gone for a week and a half. (I think I let myself get worked up over that more in order to avoid the following... although the crying/screaming for the entire way out didn't help lessen my anxiety about the trip home.) - Surprise biopsy the afternoon before I left on aforementioned trip. [Complete with two attempts before the area was numb, and even then one side wasn't completely numb so I still felt it and the stitches. Not so good for a person who has a needle phobia and can't stand anything poking into skin.] Waiting for biopsy results. [All good, it looks like one of my injections went wrong and caused trauma to fat cells - who knew this was a thing? - which caused a hard lump that my doctors didn't like. The surrounding cells weren't too happy either.] - Increasing pain in the area of where one of my tumors was and a weird poofy spot on the same side. - Coming home just in time for my little man to get shots, unpack and repack for a wedding which is the first time that we're leaving him overnight with someone else. (Really looking forward to this wedding though!) - Following that up with two days of blood work and scans before another injection, then gathering all of my records to send down to NOLA for my appointment with Woltering in two-ish weeks. - Waiting for Woltering's input on my treatment plan - Increase Sando dose? Frequency? - Waiting to hear if I qualify for the GA-68 trial, and if so, where I can get in. Basically just waiting to see if we get any clues as to what my body's doing and how to handle it. Things that don't help: - Finding the bag I took for my second surgery that I never fully unpacked. Those were some flashbacks that I didn't need right before going to bed. I also didn't need to be reminded that my CgA levels and Octreoscan were normal going into that surgery so they shouldn't have found the other tumor, implants, lymph nodes, etc. that they did. Even though I don't trust the tests, they still manage to give me a bad case of scanxiety. I just need to make it through July 15th. I just need to keep it together until then. Then I can get these things out of my mind and replace them with new things. Hopefully just planning what to wear to weddings and maybe getting around to figuring out what to do for the hubs' 30th birthday (which I just now remembered is sneaking up on me very quickly). Counting down the days...
Cancer is a pain in the butt... literally
I got my first long acting injection (Sandostatin LAR) on February 12th. I read that the injection is painful, but I was thinking pain along the lines of a tetanus shot (I got one of those the Friday before). Oh no. It might be along the lines of 10 tetanus shots at once in the same area. The LAR injection is given in the back of the hip because it's too painful to be given in the arm... that should have been a warning. I started driving home but it was too painful so I ended up walking around campus some (Huntsman felt small for the first time). I walked with a limp for about a week from the pain, so if anyone has any suggestions on how to make the injections less painful, deal with the pain, anything, please send them my way.
The pain from the injection was really all that I felt until this past Sunday. I fell asleep around 6ish and woke up around 11pm with bad intestinal pain. I was up all night with that until I was finally able to go back to sleep around 8am. I slept most of Monday and Tuesday curled up in a ball with extreme pain after eating anything. Tuesday night I was reading through emails from the carcinoid listserv and came across one from Dr. Woltering explaining how LAR works. Even though it's supposed to last for 28 days, the drug builds in your system, peaks at day 14, then fades away to day 28. Monday was day 14 for me. I'm really hoping that this dead-to-the-world-for-two-days thing doesn't happen every month. Either way, I'm going to try to move my injection day from Tuesdays to Mondays or Fridays to try to have that crash period hit on the weekend so it's less disruptive to work... this time it made me miss a meeting in Maryland. Not cool, dude, not cool.
For the time being, I'm blocking off the days around the peak of my injections to not make any plans. I'm getting really frustrated with bailing at the last minute on things because I'm too exhausted to move.
Good news: I'm finally finished with the self injections!
Give me everything tonight... for all we know, we might not get tomorrow
I wrote this on Tuesday but forgot to actually post it….
I have to admit I’ve been in a bit of a funk lately. My brain finally started churning just enough for me to kind of figure out why.
The octreotide is making me crazy tired. Apparently this is a known side effect, confirmed by Lori (Dr. Teitelbaum’s nurse practicioner) and Dr. Woltering. Several people have recommended Reiki to me and today I was magically given a gift card in the exact amount of a session at Penn (more on magic and angels another time). While I was scheduling an appointment, they mentioned that they see patients for physical therapy with a diagnosis of cancer fatigue. I immediately called Lori to get her thoughts, she was on board and faxed me a script. At the very least I’ll get off my bum and maybe even rebuild some of my core that has been neglected and cut up. I’m trying to decide between Penn at Radnor (easier to get to) and Zarett (loved them for my foot a few years ago). I’ll feel them out tomorrow and hopefully get on the PT train soon to get some energy back.
I’m also finally processing and grieving all of this cancer crap. I say grieving because I have to be okay with not having the life that I have always pictured. I have to get over that frustration and not feel like I’m giving in to cancer or letting cancer win. I have to come up with a new picture and be happy with that. And the picture doesn’t just include me but also my entire family and my friends. I also have to stop feeling guilty about changing everyone’s picture. I didn’t choose to have cancer. This isn’t something that I’ve done to others.
Examples:
Kids - I thought I would have two, maybe three, kids (God willing, of course). Now we plan on only one for a variety of reasons - financial given my medical expenses, my energy level, the general unknowns of my health, ability of either of us to be a single parent, etc. I’m doing a lot better with this, but I think there’s still partially a mental block from me processing this much more from an emotional standpoint. Just a note to family and friends: I’m claiming your children as adoptive children/siblings for a kiddo we hopefully have in the future.
Breastfeeding - Although I’ve been told that Sandostatin is okay during pregnancy, breastfeeding is another story. It doesn’t look like those two can go together. While I know that there can be complications with breastfeeding even in the most perfect of circumstances, it’s always just been a given in my mind that I would breastfeed. Now I really have to weigh it against stopping the injections, and I don’t think I’m comfortable with that. But then I feel guilty and selfish for thinking that way and The New Normal’s episode about breastfeeding didn’t help me feel any better. I logically know there are plenty of babies who are formula fed and turn out perfectly wonderful, healthy and smart, but I’m still going through an emotional grieving process.
Retirement - I’ve always looked forward to retirement and being old. Retirement to me means having a wrap around porch, a comfy rocking chair, a never ending supply of wine, good friends and family, and running a B&B or something like that. That picture is what helps keep me trudging through the grind and now I know there’s a lower probability that I make it to that point. Or if I do, if I’ll be able to afford that wrap around porch and wine given what my medical costs will be. So new plan: get a rocking chair for our (yet to be finished) sunroom, keep the wine bar stocked and find some local bingo games.
Vacations - This pretty much goes without explanation. Two vacations already cancelled thanks to cancer. Now we try to make the most of our “cancercations” when we travel to see specialists or treatment.
Work - It’s been a dream of ours to own our own business. It’s something I want to move up the priority chain (why put off doing something tomorrow you can do today), but the added expenses as well as imperative need for me to keep health insurance with a large group are complicating factors in having the necessary resources to do so.
General activity level - I’m used to flying a thousand miles an hour, working on a hundred different projects at once and now there are days where it’s almost impossible to drag my ass out of bed. It’s hugely frustrating for me to not be operating at the level that I’m used to or that I want to be at. I’m hoping it gets better as I adjust more to the octreotide and try physical therapy, but there are times when I’d like to throw something out of frustration but I’m too tired. These are the times that you see my Pinterest activity blow up. I also have to recognize that I was pushing myself too hard and have paid the price on multiple occasions and needed to slow down for my health anyway, excluding cancer. But did I mention my stubbornness?
Are any of these issues unique to me? No. Are any of these issues unique to cancer? No. Do I need to just get over it and move on? Yes, but not in my typical just push it down and hope it doesn’t come up again so I don’t have to deal with it way of moving on. Enter more regular therapy sessions. I don’t really have the time, energy or desire to dedicate to more regular and frequent therapy, but I’m seeing why the cancer center provides free counseling. Just like physical therapy, I need to make mental therapy a priority. This battle has a huge mental component to it and I need to get my mind back in shape and focused.
How to tame an independent woman? Cancer.
First things first... it seems that having the hubs give me my injections all weekend gave me enough of a mental break to turn a corner and I'm now a self-injecting pro. I still hate it with every fiber in my body and I still completely crash about 30 minutes after every injection and I still feel drained all the time and can't get my ish together, BUT I haven't been dry heaving or getting so dizzy these last few days.
Now that my brain isn't freaking out about the shots so much, my stubborn streak has been breaking through. The part of me that thinks I can do it all, that I don't need help and that I shouldn't have to give up any part of my "normal" or "pre-cancer" life. I have always been a very driven, problem-solving person. From about fourth grade through freshman year of high school, I was dead set on going to Northwestern for their political science, philosophy and economics program. During high school, my emphasis shifted more towards economics than political science and I set my target on Wharton. Knowing that getting into any Ivy was a long shot, especially Wharton, I made sure that I did everything in my power to put myself in the best position. I met with anyone that I could who was connected to Penn or Wharton, I took classes at the local community college during the summers, while working, to fill the holes of subjects not offered at my high school. I identified my target, I figured out a game plan and I attacked it step by step.
I’ve always been able to figure out what to do by finding the right person, finding the right book, taking the right class, whatever it might be. The problem with cancer is that there is so much ambiguity surrounding it and treatment options that it is very difficult to develop a game plan that can be attacked. Layer on a rare form of cancer known for its frequent misdiagnosis, within that a rare form of origination, and within that being less than half of the average age of diagnosis and it is a real mess. Being diagnosed with Stage VI Appendiceal Carcinoid Cancer at the age of 27, one week after my first wedding anniversary, has been the most humbling experience of my life. My case has been discussed at tumor boards of two of the country’s top hospital systems. I’ve researched my disease extensively. I went to see “The Guy” in the U.S. for this type of cancer. Even so, I keep running into the frustrating response of “there are no real answers.” One of my surgeons described it best in saying that we are now into the “art” of medicine and not so much the “science” of it anymore. I have had so many false negative test results that the doctors are still guessing somewhat about how to monitor me, even with a treatment plan. At some point I have to accept that I’ve done all that I can do, but that is a very hard pill for my personality to swallow, especially when it comes to my life. I am coming to terms with knowing that I will be spending a lot of time in doctors’ offices and hospitals for the rest of my life. I am reshaping my life plans to account for a shortened life expectancy, and within that, limited mobility and gastrointestinal problems. I am learning to live with uncertainty and not being in control. Even the seemingly smallest decisions to start or stop a medication have to be approved by an entire team of doctors. The decision of when and how to have a baby is no longer a decision between my husband and me, but includes at least five doctors.
I'm really struggling with the realization that I have to slow down and getting very frustrated with being trapped in my body. I can't physically keep up with everything, at least right now. I can't beat myself up because thank you notes are late. I can't keep volunteering myself to take on even more responsibility. I have to ask for help. At the same time, I can't spend all of my time managing my health and trying to keep up with work. I have to allow myself to do things that I want to do, not just have to do, and not feel guilty that I should be calling the post office to track yet another lost package or reading all of the carcinoid listserve emails or doing yet even more research. These are things that I know, logically, but can't seem to put into practice.
In a way, this is my longwinded apology for not replying to messages, sending thank you's or calling back in a timely manner. I do read and deeply appreciate every note, message, email, comment, poke, like, picture, video, etc. I've also realized we're coming up on the one year anniversary of buying our house... hopefully we'll get around to having a house warming in the next year or so.
Shots shots shots shots shots shots shots shots shots shots shots shots shots shots shots shots everybody
I really hate needles. Even more than just needles, I hate seeing them go into my skin. Even worse than that is doing it myself. I know a ton of people do this with insulin, fertility treatments, the same drug I'm on so I should be able to do it also..... but it sucks a big one. I haven't figure out yet if the clammy chills, nausea and complete loss of energy is related to the medication or that I'm sticking something into myself, but it's not a fun experience. So far I haven't passed out (I came close) which is a huge improvement from my younger years.
Anyway, 3 down, 87 to go. The home nurse is coming to check on me this afternoon so hopefully she can tell me if this is normal or not. In the meantime I'll be on my couch being a big baby trying to do work.
Who dat?
We’re on our way back from our cancercation to New Orleans for my appointment with Dr. Woltering. It was nice to take it easy for a couple of days away from home and eat some delicious food, but I’m happy to be reunited with my own bed and our puppy, Kirk. While we had planned a Greek Isles cruise and a trip to Thailand to see elephants, it looks like our vacations from now on (or at least for the foreseeable future) will fall in the “cancercation” bucket – mini adventures planned around doctor’s appointments and treatments. We were thinking that this trip to the carcinoid mecca of New Orleans would be a once every few years type of trip, but I’m going to be making the trip every six months of a while before starting to stretch out the intervals. So bring on the food suggestions!!
First, a big thank you to my parents who gave us the flights for our trip and to American Cancer Society's Hope Lodge for giving us a place to stay. The cost of all of this is beginning to become painfully obvious and we really appreciate the support.
I’m definitely glad that I went to see Dr. W. Besides his crazy zebra office, I appreciate his no BS style. He's the first to be frank about life expectancy and said he'll let us know when it's time to run in circles, scream and shout. We're not there yet, but these are the things he did tell us:
We need to start saving our pennies because we'll need to spend $20,000 on a trip to Europe for PRRT within the next 5 years. At least at this point I don't qualify for the trial that will be at Oschner (Dr. Metz said the same about Penn... not sure if they have the same requirements or not).
See his survival stats below. I should be on the better side of 20 years, but I also need to be prepared to be aggressive. Dr. W did a full abdominal transplant on another doctor to fight his disease.
Babies... This is a matter of the heart more than a question of science. The three of us had a lengthy discussion about this, during which Dr. W switched between his doctor hat and father hat several times (his kids are around my age, just got married and have babies on the brain so he's living the baby discussion). At the end of the day, every drug down to baby aspirin has a warning about use during pregnancy. What we have to weigh is the costs associated with delaying treatment (shortened life expectancy, leaving the child motherless at an earlier age) and going ahead with either trying to have a baby naturally, IVF or adoption. This is where I appreciated his bluntness the most - As much as I want to have a baby, do I really want to if I'm going to be dead in 5 years? In his experience with octreotide since the early 80s, he hasn't seen it cause any issues with pregnancies or fertility (women or men).
He prescribed both forms of octreotide - short and long acting. I'm to start with the short acting form for two weeks (self injections three times a day), then go to Dr. Teitelbaum's office for an injection of the long acting form and continue with the short acting injections for two more weeks. Then I'll just do the long acting shots every 3-4 weeks (can't remember which). The idea is to build up my levels quickly and then tamper down the dosage. Apparently there are some knarly side effects for the first two weeks while my pancreas is basically shutting down, so you may want to stay away (and I'll probably be working from home as much as possible). The hubs is excited to stick me with needles. I hate them with a passion. This should be interesting.
I have follow up labs and imaging every 3-6 months. I talked to the lab for the special blood tests and they're working on finding a local place for me. Thank you ISI, for employing nice people.
His cell phone number is printed on his cards. He told me his one rule for patients and his cell number is to USE IT. He said he never wants to hear that I've been losing sleep/worrying about something for days or weeks before I call him. If I'm worried about something, I need to pick up the phone and call.
I also met with a nutritionist who gave me some helpful guidelines about foods that will minimize certain side effects (still have my excuse to continue eating white bread, white pasta, etc.). Basically easily digestible foods are my friends. She also gave me various goals per day in terms of minimum calories, breakdown of food groups, vitamins and other fun things. I may take that info to a nutritionist at Abramson to get some more specific ideas on how to translate it into daily life.
I think that's it... I'm pretty wiped so I don't trust my mind but I'm too tired to track down my binder of notes. Speaking of not trusting my brain, I managed to book our first hotel for the wrong weekend and I didn't realize it was the first weekend of Mardi Gras (even though about 10 people asked me about it). We realized this when we tried to check in... oops... luckily we were able to scramble and find a place to stay. Always an adventure!
Can't wait to see everyone who's coming to the party this weekend! Hopefully we won't freeze!
Dr. W's Survival Stats (midgut carcinoids):
Our latest data on 227 surgeries in 177 folks with stage 4 disease (everybody had tumor spread to liver or other organs other than primary site and nodes-obviously the difference in the numbers are folks who had up to 4 sets of cytoreductive surgery
survivial is from date of diagnosis and is real survival rates not progression free survival
all folks are in this compilation even folks like my mom who date started at age 90 and died at age 97--- so she is in the 5 year survival group but not 10 year group
5 year----87%
10 year--- 77%
20 years ----41%
so you should expect to live an alomst normal lifespan
Here are some information sources:
Intro to NOLA NETs - I received this with my registration packet to see Dr. W. It has a good intro to reasons why Type A personalities like me end up in Dr. W's office.
Octreotide Info - OncoLink - I found OncoLink through the Abramson Cancer Center's website and it has been very helpful for early research, appointment prep, etc.
Octreotide Info - Chemo Care - I used to love watching Scott Hamilton do back flips while ice skating and recently came across this site. Each site has a slightly different information. This website focuses more on chemo and how to manage the process/side effects.