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My Garden Style Cancer is Kicking My ***

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Spent yesterday feverish and ill. I am leaking from my backside from the HDR brachytherapy. This is not the most fun I've had in life. 

On the up side, I am vertical, no longer so dizzy and ill that I can't walk. I'm torn on whether to make the four hour round trip to our house on the Oregon Coast. 

Daughter, son-in-law, and busy kids are there, and she's had a horrible cold, but insists she is no longer contagious because there's no fever.

Of course, that's nonsense. A common cold never has a fever. Anyone willing to weigh in?

 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Sorry you are having so many problems with your treatments. I hope it levels off very soon.

I would be concerned about exposing yourself to any germs right now. Your blood counts may be low and that would set you up for catching things. Especially since you are having issues to begin with! Plus, who knows if the kids will start showing cold symptoms while you are there?

My two cents!

Love and Hugs,

Cindi

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

So grateful you weighed in. I mustered the energy yesterday to do a little shopping for my sweet husband, and helped him pack the cooler to head out to the coast without me. I realized that with the waxing and waning stomach pains (cramping at this point) and the complete lack of energy, I would not be able to enjoy myself anyway!

Also, my stepdaughter's really icky mucousy coughing and etc. really scare me. Husband will not be hugging her, but will be around her and the little ones. Hopefully, that degree of separation will keep me from getting ill.

I am at least able to walk around today without feeling like I'm going to fall over or get horribly ill. My mom (gone since 2011) could always tell when I was sick by my color. I'm so pale today! I will contain to work at hydrating and go light on food. 

All of my reading about "mights" in terms of side effects have become quite a bit more intense now that I'm living in this space. I don't regret my 5 HRD brachytherapies, and as I'm HIR of recurrence, knew I must get them. I will say that there is a pay off. I will get through this!

Thanks again, beautiful Cindi. Grateful. I have felt like crying most of this morning, but continually ask myself, "Can you do this? Yes! Yes, you can!"

 

 

 

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

was a good one.  No, fever is not a symptom of a cold.  Anyway, sounds like a quiet time is what you need.  Time to just look after yourself.  I hope you start feeling better.  At least its not so hot.  I used to. live in Eugene, and we travelled to La Grande sometimes.  It could be hot.  Calgon used to have a commercial saying "Whisk me away".   I hope you can find peace and comfort this day.  

Sue

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

I lived in Eugene while I was getting my undergrad degree, in run-down houses on W. 5th! There was a healthfood store I loved over there--Sundance? and a cafe I ate at, that had the most delicious carrot relish on its turkey sandwiches. 

Later, I worked for Oregon Supported Living Program there--OSLP--while my ex was in grad school. Then, we lived in that strange little time smackdab between Eugene and Springfield, down a little lane and right next to the train tracks. 

The whole hippy vibe, Oregon Country Fair, Frog, all that stuff!, lives in a very special space in my mind. Eugene! roses on the bike path, wild fennel!

Thanks so much for reinforcing my decision. I kind of feel like crying. Well, I do feel like crying, but I also feel a little triumphant for taking care of myself!

LOVE to you, and I love your name, your blog....all very cool!

 

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

And crying is cathartic.  Nothing wrong with a good cry.   I enjoy writing too.   I was young when I was there, it is a. long, very complicated stage of my life.  But my best friend and I, when 14, were able to sneak into a concert at U of O, and a new band was playing, the Rolling Stones.

 I hope you are writing a journal about your experience

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Got a great chuckle thinking of you and your bestie sneaking into a concert at the age of 14! and The Rolling Stones!!

I bet you have had a very, very interesting life...

Yep, I do write. I am a published author, and I'm writing a book about my cancer experience. Typically, memoir is best written about a decade later, but I just don't know if I'll feel up to it in ten years. I'm mostly going to be using my Cancer Bridge journals for my little book. 

The first book or anything I found about uterine cancer was Fran Drescher's book "Cancer Schmancer" and I was SO relieved to find it. At the time, I was so desperately, depressingly alone, and hadn't thought about discussion boards or crowd sourcing on FB. Then, I joined three uterine cancer pages on FB and met my cancer best friend. She was like some of the amazing women in here. I would say that personality-wise, a lot like Flufff. 

We were having a lot of fun back and forth, but she got her port in and things suddenly took a turn, owing to her heart issue. My cancer "bestie"  died. Suddenly and shockingly. Her husband and I are now in touch. She had some really bad health issues that had occurred way before her cancer treatments, and when she began dumping weight bigtime, I was very worried. She was a much better person--emotionally and interpersonally--than I am, I think. Her aim was always to lift others up. I've tried to be that person, but I'm weak, sick and tired---but I will say that being in this site has given me some hope. 

I think I have a hard path ahead. I'm HIR, and I've not been "blessed" shall we say with the best genetic material. Let's see if I can buck up and get it together! Today is a much, much better day for me. I've been up and down. Yesterday, I was only down, ill, miserable.

Better day today! 

 

 

els19
Posts: 105
Joined: Jun 2014

You definitely made the right choice. Radiation does kill those white blood cells and really effects your immunity. I know that treatment often seems like they're almost killing you to save you. I learned to give in to the bad times and rest. It will get better!

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

I AM better today than I was yesterday, and your encouragement is very helpful! I think I would like to learn more about how radiation affects immunity. Thank you for mentioning that. I am so glad I decided not to go! 

Big hugs to you!

alicia2020
Posts: 162
Joined: Sep 2020

I haven't written anything on too many posts lately because a lot of it has been about radiation or bracy and I have no experience or information to provide that would be helpful.

i DO/CAN emphathize with your feeling ill and crying. I've had an easier time than many of our friends here, but it was still devastating emotionally and physically. A long hot shower has been my go-to therapy for all life's ills for many years! And it was horrible for me that i couldn't do the one thing that I knew would make me feel better. I was so weak from the chemo and violent vomiting (I had a stomach lining issue develop that was not controlled by regular chemo-nausea meds) that I was scared to get in the shower by myself. And after only a few minutes I had to get out. Thank goodness we have a bench in the shower, so I could sit if I needed. I was as weak as a kitten. It made me cry. It's bringing back tears to my eyes just thinking of it now.

My point is....we've all been there and completely understand what you're going through. You WILL be OK again. It will get better. I'm glad you found us.

Hugs and prayers to you,

Alicia

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Your post touched me so deeply. I read it many times and I have a tear rolling down my face. Not the first tear today. 

One of the really hard things is when there's that thing you do, that you realize you can't do. You have to be such a cheerleader for yourself, your old self who wants to be strong and riding the bike, and climbing the mountain. Or just standing under the hot shower.

Thank you so much.

I think that it's such a valid thing that those of us with uterine cancer--whether serous, stage whatever, grade whatever, chemo, radiation, whatever--are all struggling with that part of us that makes us women.

We celebrate our first menstrual cycles. Some of us get to have babies. Some of us struggle with pain of miscarriages, endometriosis. Menopause. 

When that part of us that is our reproductive organ gets ill, it's a real slap in the face. I seriously miss that stupid thing, that uterus. I seriously miss my cervix. Thank God they didn't take that other thing, ha ha!

I don't want to feel weak and sad for long. I will climb out of this ditch!

Thank you, Alicia<3

alicia2020
Posts: 162
Joined: Sep 2020

You're very welcome. It makes me feel good to know that I've helped you. I felt frustrated that I had no wisdom to offer as to your treatments, so I wanted to help you with something I DID know something about. I don't know as if I'll ever forget what that fatigue felt like and how terrified and sad it made me feel. I wanted to give you hope and something to look forward to...a time when you start to feel like your old self again!

Hugs, hugs, hugs!

❤️, Alicia

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Today was much, much, much better. 

1. I got my quarterly tax documents done for our Airbnb rental, and mailed! It took forever, as I decided to be smart about pain control and eat a pain gummy (I'm in Oregon!), which meant that everything I did was like walking through glue! Pain-free, disorganized glue, but I got it done.

2. I did quite a bit of housework, and made husband a salmon burger for dinner, with a strawberry milkshake.

3. I fed the dogs, watered some things outside, and did some laundry.

4. Played the piano a bit. 

5. Hung out in here and read and studied a bit, and got to know some other people in the Health and Diet thread. Great thread, btw!

6. Took a shower before husband got home, which meant that I no longer looked like a dirty little ragamuffin who had been moping around in pain by herself on the national holiday!

7. Wrote a very direct and assertive e mail to a company that isn't reimbursing us for an insurance fiasco, and just decided to go with it. SEND!

I also ate quite a lot today. I was so hungry following a couple days of very little food. I just allowed myself to eat what I felt like, which wasn't anything terribly unhealthy. I am now happier and more "settled," and feel like I'm not on a damn raft in the middle of stormy seas alone. 

Okay, sleep well!

 

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

...went okay. Ish.

The nurse called first to ask a series of questions about bowel, urination, etc.

Suddenly, she asked how many times in the last eight weeks I had "thought" about sex or something like that. I went off the rails.

Basically, I said, "you've got to be kidding me. I've had just about everything removed, and have been waiting patiently to find out why I'm still in pain, every day. I haven't even started the dilators yet, and you're asking me about sex? You're kidding, right?"

I found that I was really angry. It just seemed so insensitive.

She apologized and said she was just going through the questions. I told her she should have prefaced the "transition" to sexy time questions by mentioning it would be a bit "sensitive" or sexual in nature. 

I think I'm just really depressed and also at the core, just plain angry. 

Dak82's picture
Dak82
Posts: 81
Joined: Dec 2020

I have found it mildly amusing about how much the oncology world, when dealing with "cancers below the waist" seem focused on sexual functioning. I'm guessing most women aren't thinking about sex for quite a while after finishing treatment and certainly not during treatment. I used the dilators only because I didn't want to have painful exams every three months. But I stopped when the lung Mets were discovered since we canceled radiation and I figured that wasn't going to be the problematic part of body!

I sure hope you are feeling better. I only had 3 brachytherapy sessions and had no problems--been lucky in all treatments with very little in the way of side effects, but given that we haven't found a successful treatment yet I'm starting to wonder about the caution we are all given. That good or bad side effects are not an indication of efficacy. Hmm.

Cheers,

Deb

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

I'm feeling a bit better physically and emotionally today. I have less "below the border" pain (ha ha) and am not angry or sad, a good thing.

Just knowing I have an Rx for my old faithful antidepressants sitting at the pharmacy waiting for me gladdens me. Not sure I'm going back on.

So, this triathlon you have on the dockets for 2022 - which is your best ability, swimming, running, or biking? I'm pretty fast on the bike and am mildly embarrassed to admit that I am very competitive these days at the university pool, where I wait for an unsuspecting guy to get ready for a length of crawl, then I turn up the volume and race him (he doesn't realize this, he's minding his own business like we all should, ha ha!) to the end of the length where I luxuriate for a few seconds and wait for him to notice I've arrived first. I'm so silly! 

My niece and I used to compete on the Wii yoga board, where she once stood on one foot for 32 minutes to beat my score. When she got on the next day to check her "first place" position, I was #1 at 33 minutes! laughing. That was fun stuff. 

Dak82's picture
Dak82
Posts: 81
Joined: Dec 2020

Swimming is my least worrisome part because I grew up as a swimmer then took a 30-year break before getting into tris. My sister who is a year younger than I am signed up to celebrate my 50th birthday. I hadn't ridden a bike in forever and although I ran to stay in shape for USAF fitness tests running after a long bike ride is totally different.

I admit I took pleasure in comparing my swimming to others; but every once in a while someone would hop in the pool and paste me! Good to be humbled occasionally. We will see about the full IM I have on the calendar for July 2022. I will have to start serious training 30 weeks out given my lack of long training the past 9 months. I won't offer any more if-the s at this point, but suffice it to stay that stabilizing my cancer is goal #1. Keeping up walking and some bike riding helps me keep my sanity.

Cheers,

Deb

Spydergal's picture
Spydergal
Posts: 47
Joined: Jul 2021

Wow, that is horrible, I hope you start feeling better ASAP and your reactions to the HDR Brachytherapy lesson soon. I don't even know what that is and what they do but hell it sounds awful. Hang in there

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

I am very grateful that some nice folks in here interact with me. I just get kind of self-invested, and it's unhealthy. It's extremely helpful to have a community of other people in the same boat (a tippy boat, might I add) so I can stop being so self obsessed all the time. I am glad, very glad, to follow others' situations. I am especially interested in people like you and Deb who try to look beyond a current difficult situation to a broader picture, a hopeful time, a wider scope, a sunny day. It makes me very hopeful myself.

Love my sisters. 

Dak82's picture
Dak82
Posts: 81
Joined: Dec 2020

The next 9 days will set a future course for me. I have a chest CT scan on Friday and depending on what we see we will either stick with dostarlimab or start a chemo treatment with Doxil. I think my oncologist wanted to move directly to the chemo due largely to my scary scan nearly a month ago that indicates rapid tumor growth in my lungs a sudden involvement of mediastinal and hilar lymph nodes (down the center of the chest). This scan was done 1 week after my second dostarlimab infusion. I am inclined to give the immunotherapy at least one more try. So next week will be the decision point. I don't know if it's been the extra long break between treatments but my cough has nearly disappeared and some of my aches and pains in the rib cage areas have moderated. I know how I feel but have no idea what the scan will show. The darn hospital stay for the small bowel obstruction and subsequent surgery really threw me for a loop with respect to gauging how I feel because I definitely feel a bit wobbly and pretty weak. The extended time before the next infusion of whatever is due to my oncologists desire that I regain some weight and muscle mass. I am back to walking 4 miles and working in other exercises so doing what I can. We'll see. One day at a time.

love to all,

Deb

Afoste3
Posts: 22
Joined: Jun 2020

Just writing to send good thoughts (I don't have anything of substance to add re: the choice that's coming up for you).  I'm glad you are out of the hospital and active again.  It also sounds like you have a committed and involved doc which is always great.  Hope you keep building your strength and come to a decision you feel good about in the next two weeks!

Anne-Marie

Dak82's picture
Dak82
Posts: 81
Joined: Dec 2020

Sure appreciate the thoughts and prayers from everyone on this board. I think we are looking a bit into an unknown future which is why "one day at a time" can be such a powerful mantra. Sure doesn't help to do what-if games at this point but it's nice to know there are more options if needed.

Cheers,

Deb

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Back to walking 4 m. and given that you had that obstruction and had to have surgery, well. You are quite the trooper. As you say, one day at a time. It is interesting that your pains have subsided a bit, and I hope that's a good sign. I am thinking about you a lot, and hoping for good news in charting the course. I have not been able to work out much the last three days because we had a very serious family emergency that I simply can't share, given the "open-ness" of the internet. I will just say that it has been extremely worrisome and very stressful. Fortunately, things are improving now, and we are all sleeping better. 

I'm so glad for this day, just this day. Outside it's beautiful, inside I'm comfortable. I have adjusted what I put in my mouth so greatly it's still surprising to me. I just don't eat much "for me." I'm not too hungry, either. I was trying to remember what I ate today. Coffee...a Lara Bar...two pears...vegetables with a scrambled egg...three spaghetti noodles (wanted to check for doneness), an ounce of beef. Two bites of husband's turkey sandwich. I'm happy that I'm going "light," as I feel better. 

Deb, I hope you're able to eat and that those innards are cooperating with you. Please keep us updated throughout this period of time, and I am interested in knowing how things turn out within this next nine (eight) days.

All the love--

Deb

"the other deb"

 

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