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All-inclusive resort again, but it sure ain't Mexico... UPDATED

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

UPDATED SUNDAY NIGHT

I have great news! I didn't realize this is the same vein that my port is in. I was sent down for an ultrasound and it turns out this is actually a big blood clot right next to where my port enters the vein. My echocardiogram had some issues, but those are consistent with having a clot in this vein. It turns out the vein is ok up high in my neck, and down my left arm, but it is bad in the entire chest area. The fix is just to up my Coumadin dose. No longer on "preventative" 1mg/day. So much for preventative... For right now I'll be on 2.5mg/day to make sure my INR doesn't go too high, since they can't check me for 10 days because I AM GOING TO MEXICO ON MONDAY!!!! I have the ok to travel.

This is the first time I have been "lucky" to have a PE last year. Because I have experience with Coumadin and know well how my body reacts on it, I get to leave on my trip. If I didn't have this experience, I would be here on Lovenox shots while they played with Coumadin dosing checking me daily.

Everyone came in shifts to visit me today, except my father-in-law. So at some points I had a very full room. Tomorrow after the Vikings/Packers game we are having our head shaving party. My older son is now joining us too. The youngest and I will go bald. My husband and older son are going down to a #2 buzz cut. His girlfriend said if he shaves his head, she'll shave her legs. My oldest daughter says no way - she is not shaving her head or legs. ;) She cut off her very long hair last fall when I was dx'd. The idea was to have the hair to make a wig for me should I lose my hair. But when I started checking around, even though I was providing the hair, the cost to make a wig was way out of reach for me. I still have the hair and I'm going to check around a little more again. Her hair is just like mine was in my 20's. That could be fun to have back...

Some of my good friends that travel to Mexico with me sometimes (we are spread out all over the US and Canada), sent me spending money for my trip. I've got such a great family and wonderful friends. I really am blessed. And I'm going on my trip to the island! What a rollercoaster ride this has been again. I'm exhausted and have way too much to get done tomorrow, but that is ok - because I get to go!

Thanks everyone for your support and I know you all understand the crazy rollercoaster of cancer.

Here we go again. I'm wearing out from all of this. I'd been keeping my spirits up and being flexible and doing well with patience. But I'm just tired.

Too much to write here, so I'll send you to my CaringBridge if you want the longer version. Read journals from Friday and Saturday.
http://www.caringbridge.org/visit/kathrynblume

To sum things up, CT yesterday (suspected PE) followed by my already scheduled PET/CT. The CT showed no PE. Oncologist then wanted my heart checked. Couldn't get into the heart clinic on Friday afternoon, so he sent me to ER. Everytime I am sent to ER on Friday I get admitted. I'm on the telemetry floor. They suspected I might have had a small heart attack last week. Every 3 hours they woke me for vitals and labs last night (checking heart enzymes among other things). Every time my port gave us some trouble, so of course I was wide awake each time before we were done. This morning I had an electrocardiogram. Between dealing with the disappointment of being in the hospital again, and the pain I've been dealing with for days, and now being so tired, I am wearing down.

I actually self-diagnosed before the doctors did, after reading my CT results. They all just focused on no PE, and moved forward. No one paid attention to "Stenosis or occlusion of teh left subclavian vein with extensive collateral venous network over the left shoulder and back." (Iv contrast filled in the entire area.)

The hospitalist came back in a bit ago and I presented him with my CT report and told him that once I researched those findings it fits with my complaints. He said he had just run across that and thought so too. So he mentioned it to the oncologist on call today. The onc is still up on 5th floor (cancer floor where I normally am, but I'm trapped on 3rd for telemetry, hooked up to the heart monitor). I've been waiting for him all day. I was told he'd be here by 2:30 and it is going on 3. No surprise. Initially I was told I'd probably be going home by 10AM. HAHAHA. I'm not sure if they can do the angioplasty I need since i have been on Avastin? And they don't do them at this hospital. They do cardiac angioplasty here, but not subclavian. So I would have to be moved to the other hospital with the big heart clinic. The hospitalist said he didn't know what they would do. Increase my Coumadin? Start IV heparin and pain meds? Angioplasty? He really doesn't know for sure and said the onc will discuss it all with me.

Not looking good for leaving on my trip to Mexico Monday. Our early family gathering for Thanksgiving today had to be cancelled. I tried to switch it to a pizza party at the hospital, but my room is tiny. The family lounge on this floor is tiny. And I haven't known when any doctors are coming today, or what procedures I might have to do. No family gathering. No head-shaving party as planned.

I looked in the mirror today and honestly scared myself. I look like hell. In my mind I look totally different. I can't believe what cancer has done to me. A year ago I looked really young for my age - and I looked good. Now I look a lot older than I am, and kind of scarey...

My organs were in great shape a year ago. Chemo is killing me. Cancer won't kill me. Chemo will. I am positive it is chemo that caused this.

I'm doing ok, really. I'm just getting tired, and I know I can vent a little here.

AnneCan
Posts: 3692
Joined: Oct 2009

I am so sorry for all of this. You will get back on an even keel. I hope you feel better soon!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Sounds like your bad luck with Friday ER visits is holding :(. I'm sorry you're back in the hospital and they are having a hard time locating or agreeing on what's causing your problem. I pray they get their stuff together soon and you are on your way to healing. You really have been through a lot and I wish your team would do a better job of staying on top of things for you. Sorry you are having to reschedule your head shaving party and possibly your trip to Mexico; that just really sucks. Stay strong and keep us posted, ok?
mary

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I am so sorry that you are going through all of this. You just seem to keep having such problems and I feel just horrible for you. Dang on missing your trip to Mexico and early Turkey Day celebration. I hope the doc stops in soon to see you. This cancer and all the s**t that comes along with this disease just sucks. You sure have had your share and sometimes it just doesn't seem fair. I will keep you in my prayers and hope that you can get this situation under control. HUGS to you

I took these off the internet for you just in case you might need them for your doc visit:

Under 5FU: Additionally, there have been reported cases of cardiotoxicity including heart attacks, chest pain (angina), sudden death and irregular heart beats. The mechanism of the heart toxicity is no known. http://www.oncologychannel.com/chemotherapy/medsideeffects2.shtml

Under Avastin: Stroke or heart problems, which can be fatal. Heart problems include blood clots, mini-stroke, heart attack, and chest pain. Stop Avastin therapy if these occur.
http://www.avastin.com/avastin/patient/

Under irinotecan: There are two particular syndromes of side effects that are associated with irinotecan. The first involves severe dehydration, low white blood cell counts, fever, and abnormalities in various blood tests. The second relates to the cardiovascular system and includes fatal heart attacks, blood clots that travel to the lungs, or strokes. Patients receiving irinotecan should be carefully montiored, says the American Cancer Society's website. http://www.cancerdecisions.com/content/view/571/2/lang,english/

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I am praying for a long break from all of the health bullsh*t for you, you have been through so much. I hope once you get to Southdale you can have some type of party for you and your family. Good luck with everything.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

K I am so sorry this has happened....I hope some sort of holiday celebration will work out....darn...one thing after another....

mags

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I hear the anguish in your post, Kathryn. Many times I've heard the Cancer won't kill you, but the treatments will.

As for being beaten down, I understand...I'm in the cellar with you as I've done 25 of 30 radiation treatments and they have flat out caught up to me...your body hurts so badly and your mind wanders off to that dark place. You begin to think "I've just about had enough." I go back on Folfiri after we wrap up rads/5fu chemo, so there's just a few days break and then 10 more of those treatments.

I'll save my thoughts on this matter for another time - but you can believe that after 6 years and more of this, "Tired" is what I do understand, and all too well.

Treatments are only as good as the body will allow - and as we continuously pound on it over the years, it does add up and take a toll.

It would be all to easy to say "Stay strong" or "Hang in there" - those are easy catchphrases and sound so nice, unless you're down in the mud with treatments and such.

I can personally tell you that on my "3rd Tour of Duty", that I find it is getting harder and harder to do these surgeries and treatments, even with what I've learned the hard way. Mentally and physically, it is very challenging and so many times....well, the days are long and dark...and we must walk alone at a certain point, just past the line in the sand.

Your statement that you were "scared" really hit me - my hair was starting to go after 2 shots of Folfiri, but then slowed down - we resume in December and I figure it won't last long...don't know I feel, but I do have a plan in place to cope with it - that post will be coming in early 2011.

I appreciate your honesty in this post - we really need to keep it real around here. Your freedom to express your feelings today, has also allowed me the permssion to mention a couple of things on my mind - I've been quiet and keeping them to myself, and as the days have rolled into weeks, and the weeks into months, it's all been eating at my insides. I've wanted to post, but just haven't.

I want to thank you for helping me some today - I want only the best for you and it does pain my heart to see you hurtin' so much. As long as I can though, I will stand here with you and we can wallow in it for awhile - and then we'll help each other up and get on with, I suppose.

My thoughts are with you today!
-Craig

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Craig - you have have been on the rollercoaster much longer than I have. If I'm going this crazy right now, I'll be a basket case by the time I've gone through 6 years. I only hope I can have half the strength you've shown.

I am glad to hear that you are down to only 5 radiation treatments. I know I say "only" but for you it is probably more of "I can't believe I stll have to do 5 more." 5/6 down and only 1/6 to go - the end of radiation is in sight. It sucks that you have to endure 10 cycles of FOLFIRI after that. The one thing I'd say is speak up and ask for an extra week off here and there if you need it on FOLFIRI. The studies pretty much show no adverse affect when you have just a couple cycles extended a week. And when you are getting so beaten down, it can make the diference in getting through it, or just saying I've had enough - I won't do anymore.

I'm sending you big hugs and a shot of energy (I don't have a lot to spare right now, but I want to share with you, as you need it even more than I do right now). I don't know how much energy you can send over great distances, but when I meditate before I go to sleep in a few minutes, I will be sending you all the energy I can. I hope you are sleeping and will receive it in the form of a big warm hug, and wave of calmness to help you rest well and dream well.

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Dear Kathryn,

I am so very sorry you are in the hospital again, but if it means finding out the cause of your pain and getting it resolved, then I guess there is a bright side.

I understand your frustration about doc visits at the hospital. You can't ever predict when they will show up, and the waiting for news makes it that much more difficult.

It does worry me that you are having to be your own diagnostitian. I wish you could get a whole new team of docs who would take over that job and help you get on the high road of all this.

Glad you were able to get on and vent...you don't have to keep it to a little either. We understand, and are just frustrated that there isn't more we can do.

Hugs,

Marie who loves kitties

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Cancer Sucks, cancer sucks, what more can we say, Dammit! Dagonit! Thinking of you!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Oh Kathryn,
I hate what you're having to go through! I wish I had advice to offer, but I don't know anything about the heart issues. All I can do for you is offer my well wishes and let you know that I will be praying. So sorry about Mexico and the family gathering...
Damn the chemo and what it does to us- it's just such a lousy shame that we have to take and deal with all the bad it does to you while it kills off cancer cells at the same time.
Hang on & don't let go-

Lisa

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Kathryn, reading your post makes me cry. I'm just having kind of a down day, but nothing like you are having. It seems when it rains it pours. Do your best to find some bright spots to focus on. Maybe having your family around you!! But on the other hand, it is ok to just be down, you do have a lot going on. I will keep you in my prayers and thoughts. Jean

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

know that l know how important was it for you! You say you look bad , which is the most common looking while on chemo ,think on that , but it cures! in your case look the results of your labs! it is doing it's work, unfortunately , with temporary scares in our bodies and minds !.
Today you feel terrible but more for the disappointment than for any other thing!
Mexico will always be there, easter time, summer,!.
Just start to prepare your next trip in Easter time!.
Hang there.Take care of you Kath!.
Big hug!

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

So sorry for you Kathryn. Praying for better days for you, and soon!

Gail

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I think all of us can relate to that fed up feeling. I too hear it in your post. I so wish I could throw something your way to help but all I can offer are some prayers and some really big vibs. They will get a handle on all of this and then you can get back to your "real world"..... so sorry how this messes with all your family plans. You keep standing strong!! Take care

Jennie

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Sorry Kathryn this is going on for you i wish you the best .and my paryers are with you

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

I am sooo sorry for all you are going through! The hospital is never fun and definetly never gets easier.. You all that are fighting this are the strongest people I know and are truly my heros!! Keep staying positive and I will send good vibes your way:) and I bet you are still as beautiful as you were a year ago!!

Loves,
Mel

Luv2lunch
Posts: 272
Joined: Aug 2010

Kathryn,
I'm really sorry you aren't feeling well. I hope you can get out of the hospital soon. My Mom has her good days and bad also. Today she is down.
I will be praying for you to have strength. I hope you feel better soon.
Linda

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

I'm so sorry to hear that you're back in the hospital. I'm sending good thoughts and prayers your way. Take care, and God Bless, Cynhtia

Brenda3.16
Posts: 211
Joined: May 2009

Kathryn,

Sorry to hear that you are in the hospital. I know how you feel about the chemo really taking its toll on your body. I have been on Xeliri for 2 months and it has not been easy. The diarrhea has been horrible. The sandostatin shot, lomotil and imodium have not helped. When I went for my treatment on Friday , my onc just decided to give me the Avastin and have me take my xeloda. I still have Diarrhea today. The Avastin and Xeloda alone never bothered me before and now they seem to be. I know how you feel. It really stinks about your trip to Mexico and Thanksgiving gathering. I will say a prayer for you tonight. Love, Brenda

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

Oh my goodness. Keep saying it to you but, you have been through so much. Hope that you get to have a great Thanksgiving though even if someone has to bring it to you.

Kim

Jaylo969
Posts: 827
Joined: Jan 2010

After all of the crap you have been through you deserve a good vent. I find that sometimes just writing my frustrations out relieves some of the stress. Most of the time I don't even post them, but I know if I did I'd get some good advice/support/butt kicking if necessary, from all my CSN friends.

Kathryn, I am so sorry you are going through all this and I am sending you a double portion of good vibes/prayers/sparks with a dash of hope that things start getting easier for you. Don't worry about what the mirror says. We know mirrors lie...smile. Those of us who know you can see a thousand percent better than any old mirror and we see beauty.

I added your caringbridge link to my favorites.

-Pat

ktlcs's picture
ktlcs
Posts: 360
Joined: Jan 2010

And I hate what it is doing to you at the moment. You are some strong lady though, to endure all of this and still trying to find a way to arrange a pizza party at the hospital
Sending you hugs and prayers that you get through this soon!

(((Hugs)))

Kathy

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I kept checking for an update as I was worried for you. Thanks for the update and I am so glad to hear that it is something that they can manage again and not a new heart problem. Thank goodness! Try to get some rest for your hair cutting/shaving party and enjoy the family time. HUGS

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Yee-hah! Not as bad as you thought and you'll be off to Mexico soon!
Glad to hear that :)

Lisa

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Dear Kathryn,

So glad to hear that your plans can now move forward and that you seem to have all under control.

Sounds like the hair cut party will be a blast. Would be wonderful if you could get your daughter's hair made up for you.

Hope your trip to Mexico is fantastic.

Hugs,

Marie who loves kitties

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Kathryn your update lifted my spirits. I wish to you a wonderful Holiday!

Gail

AnneCan
Posts: 3692
Joined: Oct 2009

Kathryn,

I am so happy for you that things are shaping up for you to Mexico + have your shaving party. I hope you enjoy everything.

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