Sorry for my absence

eihtak

Hi everyone…..I must first apologize for my lack of posting lately. I have tried to read occasionally as I think about you all and how we inspire and encourage each other and how much more difficult this would all be without this forum!

 

A couple weeks before Christmas my husband was dx with a recurrence of his blood cancer (Multiple Myeloma) for which he received a bone marrow transplant 7 years ago. He had surgery to remove a large tumor on his spine and finally after a month in the hospital he was transferred to rehab for a couple weeks. He has been home now for a bit over a week and has begun daily radiation to treat the part of the tumor that was not able to be surgically taken due to its location near the spinal cord. He will be assessed for the need for chemo in a couple weeks. It has been a difficult ride but we are both hanging on!!

At some point in December between hospital visits, hotels, (he had surgery out of town), rehab facility, family and holidays, I caught a cold. While the cold symptoms mostly subsided, a lingering cough persisted. When shoveling mountains of snow I began to notice an (unusual for me) shortness of breath. Because just 2 years ago I was dx with anal cancer mets to my lung (with NO symptoms) I began to worry. I saw my family doctor (who by the way is super thorough) and she reported that my blood work looked “better than ever” on all accounts. She ordered a chest x-ray, EKG, and echocardiogram, all of which came back mostly great! The echo showed a leaky valve on my heart that was unchanged from 6 years ago. (These are not uncommon and if only mild, usually left alone) I saw my oncologist (also top notch) the next day and he too could give me no definitive explanation. He expressed only brief concern of a blood clot, yet I have been on warfarin (a blood thinner) for 2 years now and so the risk is low. Warfarin’s effect on clotting is easily thrown by certain food, change in exercise, and stress….all of which I’ve had since my husband’s dx.

Anyhow, I am scheduled for a CT scan in April and overall feel great (just still not breathing completely right, you know, nothing big, lol) My doctor made some changes in my Warfarin dose to coordinate with up and down INR (measures in clotting) levels and said he’d like to wait till April, but to call in two weeks and if still an issue he will scan at that time, or for that matter tomorrow if I’d like. Between treatment and follow-ups, I have been scanned more than anything near safe, and I think he is trying to limit further exposure if at all possible.

I don’t see myself as an anxious person but I imagine my situation could be affecting me more than I thought. I’ve tried to up my yoga and meditation (well sort of anyhow) and am hoping to not feel the need for an early scan. As I said…..I feel great, mostly.

Again, I always feel bad if not checking in here for a long period as I am left wondering about you all and know you are doing the same. It’s been a long snowy winter in my neck of the woods and am much looking forward to spring!

Be well…..

katheryn

mp327

Hi katheryn!

I have been wondering about you since I knew your husband was going to be having surgery and we hadn't heard from you recently.  First off, I'm sorry your husband's tumor could not be completely removed by surgery.  I hope the radiation treatment will be able to take care of the residual part and that he will do well through treatment.

You've certainly had your hands full--I just can't imagine.  The shortness of breath, I'm sure, has been a huge concern for you, given your history of lung mets.  I'm glad nothing has been found to indicate recurrence.  However, I can understand you ongoing concern with no reason being found and the shortness of breath still present.  You said all of your blood work results were great, which is good.  My first thought was perhaps anemia, as I remember becoming anemic when I was undergoing treatment and how out of breath I got just climbing my stairs.  I didn't realize that anemia can cause shortness of breath until I talked to my med onc, who put me on an iron supplement (which I did not tolerate well and had to discontinue).  If anemia was the cause of your SOB, I don't know how it would be treated in conjunction with your clotting issues since you are on Warfarin.  Obviously, this is why I'm not a doctor!    I do hope the CT scan will rule out anything sinister and even better, that when April rolls around, the SOB has subsided. 

I'm glad you are feeling great and may that continue.  May you and your husband both be watched over from up above.  Thanks for your update and take care.

Martha

eihtak

mp327 said:

Hi katheryn!

I have been wondering about you since I knew your husband was going to be having surgery and we hadn't heard from you recently.  First off, I'm sorry your husband's tumor could not be completely removed by surgery.  I hope the radiation treatment will be able to take care of the residual part and that he will do well through treatment.

You've certainly had your hands full--I just can't imagine.  The shortness of breath, I'm sure, has been a huge concern for you, given your history of lung mets.  I'm glad nothing has been found to indicate recurrence.  However, I can understand you ongoing concern with no reason being found and the shortness of breath still present.  You said all of your blood work results were great, which is good.  My first thought was perhaps anemia, as I remember becoming anemic when I was undergoing treatment and how out of breath I got just climbing my stairs.  I didn't realize that anemia can cause shortness of breath until I talked to my med onc, who put me on an iron supplement (which I did not tolerate well and had to discontinue).  If anemia was the cause of your SOB, I don't know how it would be treated in conjunction with your clotting issues since you are on Warfarin.  Obviously, this is why I'm not a doctor!    I do hope the CT scan will rule out anything sinister and even better, that when April rolls around, the SOB has subsided. 

I'm glad you are feeling great and may that continue.  May you and your husband both be watched over from up above.  Thanks for your update and take care.

Martha

Martha.....

Great minds must think alike....anemia was actually my first thought regarding SOB as well! Yet, I was not feeling exhausted or unusually tired, which usually goes along with that. My red blood count was good so that was ruled out. In the 2 scans following my lung surgery there was an area of slightly enlarged lymph nodes in my thoractic cavity (unchanged on the second scan when compared to the first) and my inner fear is that they have now grown....when I hinted that to my doctor (you know how they love when patients make a dx) he didn't seem to agree but that was when he suggested an early scan if I wanted it. 

A family friend who works as an oncology nurse elsewhere wondered if those nodes could in fact be enlarged but only because they were fighting this cold and lingering cough, she too said to give it a bit more time since no other concerning factors right now. I really expected the echocardiogram to show something, so it was reasurring to at least know that heart-wise I seem to be in fairly good shape. If I just do my daily activities and don't OVER exhert myself, I'm good. While that may be normal for some, it is a change for me, so we'll see.

Thank you for the well wishes, they are greatly appreciated!

katheryn

mp327

katheryn

I'm sorry it may not be as simple as anemia, which can be easily treated, but I hope it turns out to be nothing serious.  I can certainly understand your concern, however.  I guess I would be inclined to have the scan date moved up.  I will certainly be thinking of you and will be anxious to hear from you after you have the scan.  Until then, take care.

Martha

KrissyM

Katheryn

Hi Katheryn, 

I just wanted to let you know how relieved I was to see your post today.  I never write anything but I am constantly on here looking for information as my dad has been fighting this disease for a year and a half now. You are always one of the first to offer your story, support or advice.  Thank you for that.   I of course saw your post a couple of weeks ago about all you are going through and was concerned when I hadn't seen you on here.  What a relief that your bloodwork, x-ray, EKG , etc. all came back good.  As Martha said, I hope whatever it is causing your shortness of breath is nothing serious.     

All my best wishes and prayers are with you and your family. 

Kristen