Thunderstorms. I've always liked them believe it or not. But only when I'm safe inside. On the days when I took the bus and had to walk in a storm holding an umbrella, well....those days I felt very afraid. For the past week, I've been through an incredibly emotional thunderstorm. It started last Thursday....
when Mr. B complained of tightness and pain in his chest. He had noticed the same thing seemed to happen on the days when he had to take his steroid, Dexamethasone. But for some reason it seemed especially bad last Thursday when he also noticed that his heart was racing. It continued on Friday and Saturday so I decided to phone the on call oncologist just for piece of mind, I'm not sure what happened but we never got a call back. And since Mr. B was done taking the Dex for at least 8 more days, we didn't worry about calling back. Sunday Mr. B was still not feeling that great. On Monday he went for his chemo treatment as scheduled. While we were waiting to get our ride back home, I noticed Mr. B seemed to be in great discomfort. I asked him if he was all right and he said that there was a pain in his chest. I asked if he wanted to go to emergency since we were right there at the hospital but he said it was getting better and we should just go home. He was also complaining of some back pain but we thought it might be related to his fall on Friday morning. 

Tuesday I had committed to doing some work outside the home so I got up early and found he was already awake. He's been sleeping in his chair due to his back pain. He looked terrible so I asked him if I should stay home but he said he would be ok. I called him at 1 pm and he didn't answer. I was concerned but thought that maybe he had just decided to spend the day in bed and wasn't answering the phone.  I should have known better. When I got home at 5:30 pm, I found him in bed and in VERY rough shape. He explained to me that he had passed out just after 8 am and didn't regain consciousness until noon. He was sobbing as he told me what happened. He said he was scared and thought he was dying. The room had been spinning around and around like he was having a very bad LSD trip. (For those of you "younger" readers, LSD was a drug taken in the 1970s to get really high which sometimes caused bad reactions. You can read about it here.) I sobbed with him and said that I was so sorry that he had to go through this agony. I said that I would rather have the cancer myself instead of seeing him suffer like this. Then he dropped the bombshell. Mr. B said that he was not having any more chemo treatments. He just couldn't handle going through this every week.

Now, I have to say that it did seem very strange to me that he was experiencing such a reaction since his other 3 treatments didn't seem that bad. Or at least two of them weren't that bad. The second one had been hard on him but that was likely because he had a radiation treatment on the same day. I just couldn't understand why he would be getting worse with each treatment. But since this cancer and chemo is a new thing for me and I really didn't have anything to compare to on how he should be feeling at this point of treatment. 

I was able to get him calmed down and made him some tea and prepared some supper for him. He got out of bed and came to watch curling on TV. Yes curling...another Canadian pastime.*g* He seemed to be slightly better so I asked him if he would be ok if I went to work the next day. He said he felt better and that I should go.

I was still feeling very uneasy so the next day I called his Cancer Care nurse to fill her in on what was happening. I suggested she call him but I wasn't sure if he would answer the phone if he was still feeling bad. Thankfully he did and she called me back to give a report. She wanted him to go to emergency but he refused. She stressed to me that he should go right away so after some discussions with my daughter, we decided we would take him in. I called him back to let him know we were coming to get him. To put it mildly....Mr. B was NOT a happy camper. He said to me, "Don't I have a voice in this decision?"  And I responded, "No". He hung up. :-(

And so we started our ordeal of a 5 1/2 hour wait in the emergency ward to see a doctor. And then another 5 hours of tests. His heart was fine which is what I was expecting was causing his discomfort. But what was discovered was that he had multiple blood clots in his lungs. The doctor prescribed an injection of blood thinner and said he would need to stay in the hospital for a few days.

Today we were able to talk to his assigned doctor and ask him some questions. The doctor said that Mr. B was likely passing a very large clot on Tuesday morning and that's why he felt the way he did. He said that he was a very lucky man that the clot didn't stay in his heart and cause a heart attack. He said it was a life threatening event. I was stunned. How come I never knew about blood clots and Multiple Myeloma? I've read TONS of web pages about MM and not once do I remember reading anything about blood clots or their symptoms!

Read about blood clots in lungs here

So it looks like Mr. B has agreed to go back on his chemo treatments for now. Hopefully we don't encounter anymore life altering events. :-(

Have I mentioned that I'm ready to get off of this carousal?
3/22/2012 06:13:45 pm

I don't know what you use in Canada, but here it's 911. You should have gotten that callback. If they have conclusively proven that the clot(s) first appeared in the legs, then they would have traveled up the vena cava and cause pulmonary embolisms. I know, because after being infused by my allo-donor's lymphocytes, the same thing happened with me. I'm now on Corag (for the heart) and Enoxaparin (to prevent the clots from forming). It has taken a while to recover my breathing and stabilize my heart (which had had t work too hard to try to compensate for the reduced blood flow resulting from the pulmonary embolisms. But people do recover. I'm doing much better now. I'm breathing normally, don't often need oxygen, and my heart readings are normal. I'm sure your husband will be fine. Meanwhile, whenever you notice a big change in his condition, including in his mind, respond immediately. With myeloma, which I've fought for nearly fourteen years, everything that happens is serious.

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Denise
3/22/2012 09:41:53 pm

Oh Shelley, I'm so sorry to read this. MM certainly is a ride we would all like to get the heck off of. I hope Mr. B is doing much better. This is the hard part about being a caregiver, well actually, they're ALL hard parts. But that wondering if something is serious, or not, and am I putting his life in jeopardy by not racing to the hospital? My husband is a pretty stoic guy. He RARELY complains. When he had his SCT, one nurse picked up on that right away and told him, and me, that he had better learn to complain because they NEED to know everything that's going on with him to try to catch things before they become life threatening. Tim realizes now that he just has to get things checked out for his own good. Hope you all are doing better now. Hang in there!

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Shelley
3/23/2012 01:14:30 am

Lonnie, we do have 911 in Canada but I didn't call them on Saturday because I thought it was just a reaction to the Dex and Mr. B wasn't really complaining much. I have no experience with blood clots and what the symptoms are so it just never entered my mind. The whole time I was just thinking it might be heart related. So that's why I called the oncologist that was on call that day. I still don't know why I never received a call back. Our hematologist said she would find out what happened. And now that I'm more educated, the next time something like this happens I will definitely be calling 911.

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Shelley
3/23/2012 01:32:43 am

Thanks Denise. I think that Mr. B has got to learn to read his own body signals. I've always been very proactive about my own health. And so has he to an extent. But I've found that he seems to downplay some of the things that he should take seriously. I think this scared him a lot so hopefully he will be more willing to listen to me in the future. :-)

Thanks for your comments. I do really need to hear from other caregivers. :-)

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Darlene
3/24/2012 02:07:42 am

Shelley,
Thought you'd enjoy this poem. You are one unique and special pebble on the beach. You would shine and sparkle amongst the rest. Your strength would not allow you to crumble easily into sand...

But remember ... you are not the only pebble on the beach - there are so many supporters - surrounding you, protecting you, and creating a nest of comfort - a place that fits you - and needs you.

You are not the only pebble on the beach although on days like you just had - I'm sure you feel like you are.

We are all like pebbles on a beach

Some are well rounded
Some are sharp

Some are flawed
Some perfect to the naked eye

Some are round and feel
Good to hold

Some are weighty
Others light

Some bury their heads in the sand
Some like to stand out
Some get walked on

We are all individuals when apart
But when together the same

We are all like pebbles on a beach


Simone 2004

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3/26/2012 05:07:11 am

Shelly, if there is one piece of advice I would give at this point, it is that you have to TRUST YOUR INSTINCTS!!! If you have a 'feeling' something isn't right, or a sense that has you worried, TRUST IT! Act on those feelings and if they turn out to be minor alarms, so be it. But reading your post, it is clear you had a sense that things weren't right and you were looking to Mr. B to affirm or disavow them. The difficulty with any patient is that he or she may be so wrapped up fear about what may be going on that it may be impossible to sort out enough information to make a decision. Lonnie is right that with MM, much of the issues that present can be life-threatening. As the caregiver, the decision-making has to be up to you when you feel or see things that 'not right'.
My story is that my relative was going on for months with minor symptoms and his wife and he both kept pushing it off to recurrent colds with the children, a pulled muscle, etc. Even the GP disregarded the sinus infection that would not resolve itself. Then one night, while his wife and the children were away, he collapsed, was taken to the hospital near-death and dx'ed with MM... MRI saved his life and he is doing much better now, but while I was there in the early stages of assisting in his care at home, he developed a fever and I felt this was 'not good,' and his wife didn't want to give him water in case he had to go to the hospital and have surgery. I urged them both to include water, but no, they felt they knew best. He did end up in the hospital, the doc said water would have been helpful, and the fever was due to a blood clot developing in his leg.

The point in telling the story is that the patient, and esp. more true of some men, less likely to take symptoms seriously when others may be feeling otherwise. Go with your gut as they say and don't be embarrassed if sometimes you are called a 'worry wart' - as you get better at listening to the little voice, you will be making better decisions. It's not an easy job to be the caregiver... we all know this.

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9/11/2012 01:44:02 am

Your blog looked so simple to design that I decided to create one, thanks!

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Shelley
9/11/2012 05:15:41 am

It was very easy to design, Warren. And I'm pretty green when it comes to things like this. LOL

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9/26/2013 01:47:21 am

I enjoyed reading your blog, thank you.

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Shelley
9/26/2013 03:34:33 pm

Thank you for stopping by, pearla!

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