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So many lows and so few highs


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I'm having a hard day friends. :cry: Yesterday we had a bit of good news and I was floating on air. Actually we both were. Then today WHAM we get a phone call for an emergency ultrasound because they suspect a blood clot in his jugular vein. Well, they got that off a single CT reading which was supposed to be a comparison which isn't done yet. NO ONE even told us about this test. Anyway, I get him in the car and we drive over there wondering. The girl at the front desk said it was marked as a "stat" and the doctor wanted the results sent to him within 2 hrs. Geeeeezz What's this all about? Still don't know and to be honest, I don't even want to call him and find out. We have an appt on the 26th for the "true" comparison so we'll find out then.

I'm going on and on....sorry. It's just that it seems as a caregiver you try so damn hard to take care of the one you love. I've fought through so many things as many of you know. It's so hard....I ask myself why is God doing this to us? He allows us one day of hope and then just yanks it away the next. I've been told that God only gives you what you can handle.....well, I think he must have me mixed up with someone else. Sometimes I feel like I'm just going to have a stroke. Would that be ironic if I passed from a stroke before this illness takes him!

I know that just typing things out helps, or so I've heard. Maybe it just delayed. Say a prayer for us? :cry:

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((((Michelle))))

I know how you feel on that one. Tom has a blood clot in his thoracic aorta that was found on the first ct after treatment was done. That was a year ago and he takes plavix daily and they monitor it. Like I said. That was a year ago and he is still here.

The word here is suspect. Don't let it worry you too much until it is time to worry.

I will keep you both in my prayers.

Denise

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((((Michelle))))

Sorry about your roller coaster. I think everything must be so much worse knowing that you have to fight extra hard with everyone for the basics where you are.

I look at the good days as nice breaks from reality. Maybe those days are gifts from God so we can take breath before we have to go on. Personally I don't buy into a lot of those sayings, but there is one I do like. A friend of mine who had advanced breast cancer used it for years - Sometimes when God closes a door He opens a window. Look for one of those windows girlfriend, and take a breath of fresh air.

Thoughts and prayers for you and your family.

Kathleen

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Michelle, I really reacted to the doctor wanting the test "stat" and you still don't know the results. They don't seem to care about you guys getting results, do they? I understand not wanting to call and just hope "no news is good news" but with your docs, it's hard to tell. Will be waiting for an update.

Judy in Key West

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Michelle (((HUGS)))

I will continue to keep you both in my thoughts. Stay strong sweetie, you are doing such a great job of wife and caregiver and it takes a strong person to do this so god is only giving what you can handle and you CAN handle it...it's just a rough day! (((HUGS)))

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Michelle,

You and hubby are both in my thoughts and prayers. The saying "God doesn't give us more then we can handle"? I originally heard it "God doesn't give us more then we can bear". With my life I go with the second one, because God sometimes will take me right to the limit of what I can bear and then let up. It usually turns out to be a good for me in the long run. ((((hugs)))

Dana

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(((Michelle)))

It's a rollercoaster for sure. I won't say it gets better- but you do get used to it until things level out. Just know we are here for you with lots of understanding and prayers.

Keep us posted please

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Michele, I certainly hope things will be alright there for your husband, and you of course. I enjoy reading your posts. I almost feel by reading what you're dealing with that I'm getting a glance at what is yet to come for me taking care of my Dad. Hang in there. You'll be in my prayers today!

Debra

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((((Michele)))),

I can very much relate to your posts, Michelle, and have had those very feelings about "not wanting to know."

Recently, Bill had taken a scheduled CT scan of his brain to see if the fluid had increased. I waited and waited for the neurologist to call. Instead, I stepped up the radiology group to send me our copy of the report. I don't know why, but they had not sent it (that alone can be stressful).

Anyway, we received the report two days later, and I read it. Fluid had actually shrunk. Thus, the reason for the neurologist not calling. The report was a "good" one.

Only those who have been on the cancer journey can know (as patients, caregivers or loved ones) the heights and lows which come with the package.

Michele, you express so much of what I feel.

I particularly liked the saying Kathleen offered about doors closing and windows opening. Hope is a lovely oasis. I try to keep it in a little corner of my mind.

Barbara

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  • 2 weeks later...

I got "one of the terrifying phone calls today . The PCP says that the onc doc called "him" yesterday and said he believes my husband's lung cancer has spread to the weight bearing bones. Good God.....why call the PCP and not us? Apparently the PCP says the Onc doc has ordered Zometa for my husband. No one bothered to tell us. Ya know the bone mets were mentioned on a ct scan that did not include a comparison to his May scan. The May scan said "arthritis only". So....what is this crap about bone mets without looking any further? I am on the verge of a nervous breakdown here with all the mis communication from these doctors. Truth is....my hubby has "zero" bone pain. I just don't understand this roller coaster they keep us on. Has anyone experienced bone mets from nsclc?

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(((Michele))),

Your expersience with the roller coaster ride is well understood. It's not easily taken, but it is definitely something some of us have been riding.

I don't know if this counts, but Bill has had a shoulder scapula met for a few years. First, they used radiation to quell it, and then it grew despite that.

As for bone mets, I am sure there will be those who will post to relate to you their experience. Zometa has been in use for bone mets.

Sending you much care, and hope that the communications become more cohesive from your doctor team, and that you will receive the information you both need.

Keeping you both in my daily prayers.

Barbara

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(((((Michelle))))

Sorry you are back on the roller coaster ride again. I know how hard that is.

I had bone mets to my rt hip and I had 5 rounds of radiation to it last fall and it is fine now. No more pain, and the met is showing hardening which means its going away.

They really should do a bone scan to see for sure if its a bone met or not - when I was first dx'd, the kept saying I had a met in my rt rib - well, the bone scan showed nothing.

Keeping you in my thoughts.

Hugs - Patti B.

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Bone scan is the only way to know for sure. A hip/spine met is not the end of the world. Mom had spine mets at Dx. She was zapped with three weekds of radiation and then again last summer and they seem to have been taken care of.

Zometa is used to strengthen the bone. There really aren't any side effects and even if there aren't bone mets it can help protect the bones.

Susan

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Thank you everyone. Your advice is just in time too because we're meeting with the onc doc today. I have a list a mile long with questions and I intend to insist on a bone scan. We have one report from May that says arthritis and one report from July that says "possible" bone mets. Wouldn't ya think that someone would want to find out which one is right before proceeding to treat something that isn't there? If it is indeed arthritis then I agree that Zometa couldn't hurt. One of the other issues that was on the first ct scan said thrombosis of the jugular vein, right? Well, they started him on a blood thinner and I insisted we look "further". Turns out it was plaque which is common in the elderly and was told it's very minor, just re scan in a year. In the meantime he was taking these blood thinners for nothing. I'm just so darn mad right now that I could literally scream. God help these docs when I'm face to face with them huh? I'll let you know how today's meeting goes......unless of course I'm arrested for assault? :D

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NOT! LOL Had ya all going huh? This is just too funny! Anyway, on to the doc visit update from today....I told the doc immediately upon his entrance into the office that I want several things:

1. Bone scan- I want to know it's not just arthritis. No need to assume bone mets. AGREED

2. Ultrasound of the abdomen- we've had pain for 2 months which is only being masked by pain meds_AGREED

3. I want Megace for appetite-AGREED

4. I want Cleocin T-gel for Tarceva rash - AGREED

5. I NEVER EVER want to hear anyone mention Hospice again unless it comes from US- AGREED

5. Let's start Zometa just in case-AGREED

Well.....my dear friends....we sailed through this visit like a charm, but I gotta tell ya, we are so darn worn out that I think we'll sleep very well tonight. Thanks to all of you ( As always) for everything. I've told you before and I will tell you again what a blessing you have all been to me. I can truly say that without all of you I could never have made it this far.

I'll return tomorrow....but it will be with good feelings and no stress. We've also decided to FIRE the PCP yeaaaaaaaaaaaaaa

PS.....Keep that bail money fund....anyone of us might need it!

PSS....Bud....fired Larry, Moe and Curly LOL

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Michele,

I love your attitude. So glad you have maintained your sense of humor. It's actually good medicine.

Your list of "AGREEDS" was spot on and when accomplished, should give you a move forward.

As with you, this board has given me such a huge support over the many, many months.

Keeping you both in thoughts and prayers.

Barbara

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