The "new normal"

CheeseQueen57 said:

New Normal

I‘m right there with you dear Eldri. I so admire through all this you sold your business, sold your house,and moved to Florida. What I would do to sell this big, old, cold house and escape to somewhere warm. But I’m afraid I’ll not have either the emotional or physical energy to do it with this uncertain future. And that was yet another of our plans which will never happen. 

We just have to take one day at a time.  Frustrating to plan, in fact I do plan and force myself through. So far I’ve been able to travel. I’m going to Dallas in a couple weeks but I always warn everybody to not have great expectations. I do get sad as they go on without me. 

We, I guess have to remind ourselves that it’s better to be here then not. When the opposite is true well...  I was thinking in bed last night if I have to have hospice I want to go to a facility. I don’t want to stay home and subject my family to that horror. Just thinkin’  

Just a thought in regards to sparing your family from the experience of home hospice ... A couple years ago we took care of my dad at home for 5 weeks while he died from newly diagnosed brain cancer. He quit eating, at all, and you can imagine what happened to his body after 4 weeks of zero food. It was frankly traumatic. But it was a privilege to take care of him ourselves when he needed it most, and it would have been an additional trauma to not have him at home, truly. I am SO glad those 5 weeks were at home, no matter how difficult. 

But I totally understand your feelings. I would struggle with the same, despite knowing otherwise.

I make very clear my limitations and I’m not a hero.  So far everyone has been very accommodating. And I feel better when I’m doing something with my kids. My husband is especially protective.  

EZLiving66 said:

Thanks!

Thanks, Pat!  We "cheesy" girls have to stick together! LOL  This disease is not for wimps, that's for sure.  And, you're right, it's good to have a place to vent where people understand what you're going through.  Most people think my cancer is "over." But, this is the second day in a row where I have felt good!  I figured after yesterday when I had that huge burst of energy today would be a real downer.  I was in bed before ten last night and slept until a little after seven when I yelled to my husband to wake up; his dog was yakking.  He tumbled out of bed and crawled a few feet to our ceramic-tiled bathroom, dragging the dog.  It was pretty funny but I didn't dare laugh (ha ha).  We went out for a late lunch/early dinner, looking for a good fish fry, but ended up at Red Lobster.  That's one thing I really miss about Wisconsin - a good supper club!!

Love,

Eldri

Living outside of Buffalo is almost the same as living in Wisconsin, so lot's of fish fry places here! ;-). The local news station even has a map for them all on their website. The great thing about living in a new place is that it's the perfect excuse to try new places. We found a dive near our retirement home that's been there since the '40's that has the best fish fries but zero atmosphere. We love it!  Now I figured a place like Tarpon Springs with all of that water around it has got to have better than Red Lobster so I did a little digging. I don't know where these places are in relation to where your condo is, but look into Tarpon Tavern (21 N. Safford Ave), Davidson't Dock Side (527 Andote Rd), and Captain Jack's Waterfront Bar and Grille (21 Oscar Hill). They all had 4.5-5 star reviews of their fish fries or fish and chips. It's a good enough excuse as any to go out on those good days! Happy hunting (or should I say fishing?).

MAbound said:

Fish Fries

Living outside of Buffalo is almost the same as living in Wisconsin, so lot's of fish fry places here! ;-). The local news station even has a map for them all on their website. The great thing about living in a new place is that it's the perfect excuse to try new places. We found a dive near our retirement home that's been there since the '40's that has the best fish fries but zero atmosphere. We love it!  Now I figured a place like Tarpon Springs with all of that water around it has got to have better than Red Lobster so I did a little digging. I don't know where these places are in relation to where your condo is, but look into Tarpon Tavern (21 N. Safford Ave), Davidson't Dock Side (527 Andote Rd), and Captain Jack's Waterfront Bar and Grille (21 Oscar Hill). They all had 4.5-5 star reviews of their fish fries or fish and chips. It's a good enough excuse as any to go out on those good days! Happy hunting (or should I say fishing?).

MA, I am originally from WNY, and when we travel back home, one of the first things I do is get a fish fry! 

Im having one of those bad new normal weeks. Ug my continuing gastrointestinal problems. Most weeks I’m ok and of course I had no big complaint last time that I went to the oncologist and now Im not scheduled till July. Yes, I’ll probably call and try to get in, but I did try the gastro office first and have an appointment in April. Around here you never get in quickly and short of the ER there is little alternative. In the back of my mind is it the cancer again or my usual learn to live with the problems. Thank you, I just needed to vent. No easy solutions:(

Soup52 said:

Im having one of those bad

Im having one of those bad new normal weeks. Ug my continuing gastrointestinal problems. Most weeks I’m ok and of course I had no big complaint last time that I went to the oncologist and now Im not scheduled till July. Yes, I’ll probably call and try to get in, but I did try the gastro office first and have an appointment in April. Around here you never get in quickly and short of the ER there is little alternative. In the back of my mind is it the cancer again or my usual learn to live with the problems. Thank you, I just needed to vent. No easy solutions:(

This is the scariest part of living with cancer. Every deviation from normal makes us think of cancer. So sorry to hear about your GI issues, Soup.I hope you will get an appointment soon and get some answers. And I hope it is absolutely nothing. 

I feel I can get used to the "new normal" if I can be guaranteed that whatever I am experiencing is not the return of cancer. I have been out of chemo only for 5 weeks and I already had one cancer scare. I never have ingestion problems. The only time I had bloating so much so that I looked pregnant was October and soon after they discovered the six cm tumor on my ovary and free fluid in my abdomen (recurrence of the endometrial cancer which diagnosed in late June) So two weeks ago when I experienced another GI episode I was scared senseless. MRI and CA125 test revealed it was not anything. I hope it will get easier to live with this fear. My husband was sick worried, he lost 5 pounds in a week.

The doctor thought that my GI problems might be caused by metformin and megace. I was surprised to hear that since I have been on these drugs since October but apparently since I was on chemo at the same time with these drugs the side effects may have canceled each other out. She asked me to check with her if I continue experiencing these symptoms. She has an alternative for Megace which has other side effects (joint pain and increased risk of osteoporosis. No fun) Actually, if every time I had indigestion/bloating I knew it was caused by Megace and/or Metformin I can live with it (In fact I can use it to my advantage to limit calorie intake. Because when that happens I cannot eat after lunch even if I only had a salad for lunch) but I am afraid to miss a sign of recurrence. 

Is anyone else on Metformin + Megace? What type of side effects are you experiencing?

My new normal is manageable:  a neurogenic bowel that make me pay if I don't stick to a routine (makes traveling very difficult), lingering neuropathy in my feet (it's minor compared to what it used to be) and hypersensitivity to the sun that has pretty much turned me into a houseplant during summer daylight hours and zero libido. I was able to tolerate Taxotere a lot better than Taxol and had no issues with my nails ( I tend to think never having worn nail polish helped and I also kept my hands protected from sunlight and detergents during chemo) and my hair grew back just fine. It just goes to show you how varied the impacts of treatment are for all of us. We all seem to end up so differently in spite of common algorhythms for treating us. The common thread I see is the wishful thinking on the part of those around us that we come out of the experience and return to what we were before. (Eldri, I have a sister just like yours making demands to camp in our retirement home and be entertained even though we haven't even moved into it yet!) We do our best, but few of us escape the need to make adjustments of various kinds. Like the treatments themselves, it's doable (because what other choice do we have?), but I sure wish it wasn't necessary. I miss the old me more than I can say.