Damn, Striker. I am sorry to hear all this. All I can do is send some positive vibes your way and join you in hoping for the best.
Hi, sorry to ask, but how did the scans work out? Hopefully your doctor visit today gave you some glimmers of hope.
Please take care of yourselves - our thoughts and prayers are with both of you.
Wallet
Just a quick bump to say I hope things are looking up for both of you.
Wallet
I never thoughtI’d see someone with a more rare cancer than I had. It can be terribly isolating as there’s so much support for other cancers, particularly breast cancer. Not that I begrudge them but I want that, too! I did find a few groups on Facebook that really helped me with information and support. Here’s one that might interest you and/or your wife called The Sarcoma Alliance:
The very best of luck to both of you. Hugs.
Thanks everyone, it’s been a tiring couple of weeks. Mrs S. had her PET scan last Thursday, and the results were relatively positive, the cancer was only seen where they had seen it before. She had her lymph node removal yesterday morning, and we expect the results of the biopsy to be in early next week. The only change in treatment that would happen if they did find anything in the nodes is removal of those in the area the tumor is draining too.
So, late this week/ early next week, she will start on the Suntent, and do that for 3 months then re-scan. She will be getting EKG’s and blood draws weekly for the first few weeks to check to see how she is reacting to the meds, and hopefully there won’t be much in terms of complication.
The most depressing news for her was that the oncologists conferred and determined that they will most likely have to amputate below her knee for best chance at full cure. This is a few months out, because they want to see how she responds to meds first, but still depressing news. We are probably going to visit OSU’s cancer center next week to get a second opinion.
Unfortunately, the mental and emotional strain is starting to take it’s toll a bit. We had a little bit of a argument yesterday, we were both a bit worn out, and nerves were frayed, and it just was a crap day. Today has been better. Cancer sucks. We’re just hoping to be able to adapt to a new normal soon.
Believe me, I understand.
One of the frustration of cancer is that there is an element of “we can’t be sure, the odds say this, but it could be that, and we’ll have to see how it reacts to treatment”.
Best wishes. Hang in there. It’s a marathon, not a sprint, but it can be devilishly hard to pace yourself.
My mom eventually died from bone cancer. A totally different situation as it was pretty advanced all over her body by the time it was diagnosed.
So I want to speak as a kid. Tell them everything. It was 20 years ago and I remember it all well. I have a friend who’s mom died of a rare illness and was kept in the dark about a lot of details. I’m much better adjusted now that she is.
I’m sorry this is more doom and gloom than I meant. Worse case. Best wishes to you both.
Thanks again Broomstick, my short attention span/ need to accomplish nature hates marathons, I want things solved now damnit! I am already aggravated with the pharmacy benefit management companies who have to have prior authorization agreements in order to be able to get her the meds that were prescribed. Because you know, some PBM does know better than the doctor about how to treat this… I hate the healthcare system here BTW.
Mr. Goob, no worries about it sounding dark, there is definitely a fair amount of dark there already, and realism is advised, though this all feels a bit surreal still. We plan on keeping the kids as informed as possible, because we want them to know and understand what to expect.
The other thing that has become somewhat paradoxically irritating to us is that our sense of normalcy has been totally screwed up, but everyone else is continuing. Our friends that we were going to go to Vegas with this summer are still making plans (as they absolutely should), there is still work to be done at our jobs, the grass still grows and needs cut, and the house still needs dusted and vacuumed. There is a large part of us that does not want to be treated differently at all, and on the flip side a part of us that wants the world to wait for us to get through this. Even though there has been a tremendous deal of sympathy and care shown to us, there is also the feeling that we are now different. this is definitely not helping Mrs S. in accepting the amputation side of things.
Thanks for letting me vent.
It’s OK to vent.
You are going to argue.
There was one time I had to take my husband to the ER. He wasn’t able to swallow and couldn’t get his meds down, but waited until we had a major storm thundering down before saying anything, and was going into painkiller withdrawal. So, he’s in horrible pain, we had to manhandle him into the car with rain pouring down like a heavy bathroom shower, hail, 60 mph winds gusting to even higher, various forms of debris whipping through the air - we arrived at the ER with him writhing in pain (literally), me soaked down to my underwear, and both of us yelling and arguing with each other. The nurses put us in a room off the waiting room, did what they could to make my husband comfortable while waiting (not much, but they tried) and let us do our yelling semi-privately. Later, when things calmed down, we were told this is not really that unusual, which is why they have a few such rooms (well, other reasons, too, but it’s one of the uses of those rooms).
You’re both human. You’re both stressed. You both have fears. Your wife is going to be feeling like crap at least part of the time, if not all of the time. When you’re sleep-deprived, not eating well, and half-crazed from worry YOU will feel like crap, too, even if not in the same way your wife does. You’re NOT saints. You’re going to argue, yell, cry, and carry on at various times.
That is all very normal under the circumstances
I was told more than once that the medical people would worry much more if I did NOT get upset, yell, cry, etc. once in awhile because being absolutely in control and calm is NOT normal.
You are going to mourn your prior, normal life (you already are to some degree, based on what you say). If your wife has to have an amputation she will mourn the loss of her foot. And I use the word “mourn” deliberately. These are all little “deaths”. They are negative changes with permanent repercussions. This will hold true even if your wife gets a full remission and many healthy years after this ordeal.
There are some topics you may need to speak about to someone other than your wife. I made sure my husband had people other than just me to talk to. These people don’t have to be professionals - one of them was a friend of ours that had been through cancer, organ transplants, and a lot of serious medical problems. I had people to talk to that weren’t my husband. You will need this, in addition to talking to each other.
Yes, it is surreal. There will even be times you feel numb. That’s OK - think of it as a circuit breaker. Sometimes it lets you keep functioning and do what must be done, don’t worry, the numbness wears off.
Don’t worry too much about the housework. Sure, keep up with what you can, but honestly, you and your wife are more important than dusting. The dust will still be there next week - yeah, I know, HORRORS! :eek: - but the needs of human beings take precedence over a perfectly neat house. My housekeeping went to hell, frankly, but I don’t regret spending the time with my husband rather than doing those chores.
I went through this, too. How could everything else be normal when my world was turned completely upside down?? It didn’t seem fair, like there should’ve been some acknowledgment from outside my situation.
That “feeling different” is isolation. This is where it will help to just know there are others going through cancer, even if you don’t feel like talking right now. Be prepared for people not knowing what to say to you and your wife. They will be offset by people who surprise you with their wise and kind words. 
I’m concerned for you, too. Don’t think that because you’re not the one with cancer that you’re less important. Please continue to monitor your depression, seeing your therapist, taking your meds. And please vent here whenever you need it!
Do what you need to do to stay healthy. I can tell you the mundane helped keep me grounded. Work, gym, chores around the house all of it helped me deal with the cancer because it just meant (forgive the cliche) I had cancer, but cancer didn’t have me.
Thanks everyone! Mrs. S. and i were talking today about how people will ask me how things are going before they will ask her. We think it’s because they don’t know exactly what to say, so they just don’t say anything, which kinda sucks, because in her words " I haven’t changed at all".
Anyway, for those who have battled or are still battling, how did you deal with the just feeling run down/ blah physically?this seems to be her biggest struggle so far.
Lastly for this post, we are going to be able to see the docs at OSU next week for a second opinion. Not that we don’t trust the team we have, just that when it comes to possibly losing a part of a limb, we just need a bit more piece of mind.
She’s tired because her body is dealing with this. She needs as much rest as possible.
I think a second opinion is definitely called for and understandable! I think most doctors don’t have a problem with them.
ETA: I know she’s eating to keep her weight up, but make sure she gets fruits and veggies in there, too. She needs all the nutrients she can get. And protein! More protein! I hope she’s not eating empty calories like sugar just for the calories.
I can no longer drink Ensure, because I drank that during my chemo. Not because I was nauseated (thanks, Sheldon Cooper) but because I honestly wasn’t hungry. Once I went an entire day without eating. It never occurred to me to eat anything. I just wasn’t hungry. Ensure was a quick way to get some nutrients in my stomach.
Her body is busy trying to fight the cancer right now until the doctors can get in there. Tell her to listen to her body and not try to push herself. Right now it’s fine to be lazy.
I cannot thank you guys enough. She is trying some of the other protein bars/ shakes to see what she can tolerate, because she cannot live off of candy, grilled chicken, and mozzarella sticks alone, LOL.
On the rest front, she did decide that she was going to take a few weeks off of work to rest a bit and get used to her meds. She’s actually going to be admitted for her first few days on meds because they want to monitor her heart, because apparently there is a small arrhythmia risk, and they’d rather have her there. Her work is being awesomely supportive of this all, which we are extremely grateful, and she’ll be able to spend a couple weeks with our daughter as she comes him from college.
CostCo sells some shakes. Some people like them refrigerated. I drink them room temp.
Smoothies are also relatively palatable and you can do a wide variety of flavors and additives to bump up proteins and vitamins.
I could live off chicken a long time, but I’d probably work in mashed potatoes, cause that’s how I roll. 
Best wishes.
Og bless a good employer. For eight chemo treatments (one every two weeks) I’d take a half day on Monday, then leave early the next day for the Neulasta shots. I used up all my sick and vacation days but work was very understanding.
That’s really weird. I ate a lot of chicken and mozzarella sticks before I started treatment, too. I wonder if our bodies crave something in them? I made my own smoothies with protein powder because I got so sick of Ensure and other commercial protein drinks. If I used yogurt I could get the protein pretty high, like close to 40 grams. I also had this awful pre-surgical drink that 1) made me vomit and 2) was like drinking sweetened condensed milk. I can’t stand that now, either, and can pick up the taste in my friend’s Christmas fudge. Ugh!
I also ate a lot of turkey, Nathan’s hot dogs, and Cheez-Its. I’ve no idea why, but they all really appealed to me.
ETA:** ivylass**, I got the “nauseated” reference. 
went up to OSU for the second opinion with the surgical specialist there, and he confirmed that amputation is probably the most likely outcome given where the tumor is. Mrs. S. is definitely bummed, BUT the surgical option there, which plans on doing the amputation further down the lower leg, is slightly more appealing. Otherwise the treatment plan looks the same, start meds ASAP, with daily EKG’s until they are comfortable her heart is not going to get wonky. We did get a prognosis of 70% 5 year survival… which is not stupendous news, but we’ll take it.
Heartbreaking moment came the other night when we were lying in bed talking, and she said “Don’t let me die, okay?” to me. If only it was that easy. I just told her I’d do my best for her, and she said that she knew I would. It was tough to sleep that night.
Anyway, thanks for the continued encouragement. We are ready to fight on!
I hate to bring this up, but you guys have your wills and such in order, right?