Morning Inventory

Posted by ajh5285 @ajh5285, Mar 2, 2023

Apologies for continuing to pepper this list with questions. I am so grateful that this forum exists to share experiences, since as I've mentioned before, I'm feeling that I'm left to my own devices to cope with the consequences of what my oncologist has prescribed.
This was a fairly typical morning. I had slept warm since one of my issues is not being able to feel warm enough.
I woke up with
(1) "tight" feeling feet, which translates into a lack of flexibility in the ankle joints, which, if I persist in bending them, often turns into a tingling sensation.
(2) "heavy legs" noticeable particularly when I went to swing my legs out from under the covers to stand up
(3) "tension headache"

Comments? suggestions for improving any of these symptoms?
Of course my anxiety level is sky high right now, too.

Background is pancreatic adenocarcinoma diagnosed end of September 2022 (aged 73), judged to be inoperable; now receiving Abraxane and Gemcitabine at a reduced dosage and on an extended interval, due to veins that liked to "blow" and less than vigorous ("elderly") bone marrow rebound from the first few Chemo infusions.

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

Hi @ajh5285 Mornings can be rough when we have cancer. I like your title of Morning Inventory…it brought flashbacks of my odyssey…making sure everything works when we get up!
Do you remember the sitcom, Frazier? One of his frequent comments was “Let’s see what fresh hell awaits today.” My husband and I used to laugh first thing in the morning when one of us would invariable say that because it seemed that each day brought new challenges, new or changing symptoms and surprises!
I’m happy to hear you’re at least finding some warmth while sleeping now. That’s just a good feeling all around. But yesterday you mentioned that there was more swelling in your feet and the ‘chemo feet’ feeling was worse. It’s interesting that it’s more pronounced now that you’re warmer. Wonder if the cold actually helped…

The ‘heavy legs’ and tightening of the ankles might be due to some edema (swelling) from water retention. Do you have any compression stockings? They’re really excellent for helping to prevent swelling in legs, keeping the blood flowing back to the heart and avoiding blood clots with long periods of sitting.

Also, elevate your legs for most of the day if you can. The more you can move around the more your blood will flow too, carrying some of that water away.
Do you have any coughing or breathing difficulties? Let your doctor know if you feel you are short of breath for any reason. It may be a signal that you’re retaining more water than usual.

I wish I could just give you a hug…of course your anxiety is through the roof right now! Tension headaches are a gift from all that stress.
One thing I have found that helps immediately is to take my right hand behind my head to the left side of the nape of my neck. Massage and rub just to the left of your spinal cord in that little hollow there as you lean into your massage. Then switch to the left hand behind your head, massaging the right side of the base of your skull leaning into the massage as you rub. That instantly releases the tightness of those muscles and lets the blood start flowing.
You can also massage the tight muscles behind your shoulders. I occasionally use a LaCrosse or tennis ball on my back…leaning onto a wall with the ball massaging my back for me.
Bio-freeze is another option for headaches. It’s an over the counter menthol-rub product that I use on my neck and base of my skull. It alleviates tension and headaches for me.
One more thing I’d like to give you is this link to a website using acupressure points. I see an acupuncturist to help me with my shoulders, neck and head. Because of my previous job and hobbies, those areas are chronic pain issues for me. Acupuncture works like magic for me. But when I’m not able to see my therapist, these acupressure points help tide me over. See if they work for you. https://www.medicalnewstoday.com/articles/326121#acupressure-points

How is your diet? Are you eating ok?

REPLY
@loribmt

Hi @ajh5285 Mornings can be rough when we have cancer. I like your title of Morning Inventory…it brought flashbacks of my odyssey…making sure everything works when we get up!
Do you remember the sitcom, Frazier? One of his frequent comments was “Let’s see what fresh hell awaits today.” My husband and I used to laugh first thing in the morning when one of us would invariable say that because it seemed that each day brought new challenges, new or changing symptoms and surprises!
I’m happy to hear you’re at least finding some warmth while sleeping now. That’s just a good feeling all around. But yesterday you mentioned that there was more swelling in your feet and the ‘chemo feet’ feeling was worse. It’s interesting that it’s more pronounced now that you’re warmer. Wonder if the cold actually helped…

The ‘heavy legs’ and tightening of the ankles might be due to some edema (swelling) from water retention. Do you have any compression stockings? They’re really excellent for helping to prevent swelling in legs, keeping the blood flowing back to the heart and avoiding blood clots with long periods of sitting.

Also, elevate your legs for most of the day if you can. The more you can move around the more your blood will flow too, carrying some of that water away.
Do you have any coughing or breathing difficulties? Let your doctor know if you feel you are short of breath for any reason. It may be a signal that you’re retaining more water than usual.

I wish I could just give you a hug…of course your anxiety is through the roof right now! Tension headaches are a gift from all that stress.
One thing I have found that helps immediately is to take my right hand behind my head to the left side of the nape of my neck. Massage and rub just to the left of your spinal cord in that little hollow there as you lean into your massage. Then switch to the left hand behind your head, massaging the right side of the base of your skull leaning into the massage as you rub. That instantly releases the tightness of those muscles and lets the blood start flowing.
You can also massage the tight muscles behind your shoulders. I occasionally use a LaCrosse or tennis ball on my back…leaning onto a wall with the ball massaging my back for me.
Bio-freeze is another option for headaches. It’s an over the counter menthol-rub product that I use on my neck and base of my skull. It alleviates tension and headaches for me.
One more thing I’d like to give you is this link to a website using acupressure points. I see an acupuncturist to help me with my shoulders, neck and head. Because of my previous job and hobbies, those areas are chronic pain issues for me. Acupuncture works like magic for me. But when I’m not able to see my therapist, these acupressure points help tide me over. See if they work for you. https://www.medicalnewstoday.com/articles/326121#acupressure-points

How is your diet? Are you eating ok?

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Thanks for all the suggestions.
Some of what you're doing sounds like myofascial release, which I have tried, and was temporally related to hematochezia which turned over the course of a day into a frank GI bleed that landed me in the hospital.
I have tried acupuncture and wasn't able to stay the course, although it was early on in the course of my illness. I hated the Chinese herbs and disliked intensely the fact that I was supposed to have faith in the acupuncturist, for the therapy to work (I suppose that's my western medical training at play screaming "placebo effect"). My only other experience with the therapy was for a horse that had a spinal cord injury. Again I was supposed to believe that the animal communicator thought it was working. It did not help the horse objectively, and eventually I had to have him euthanized. I might try giving your suggestion of acupressure a try, since I've seen a massage therapist for more than 2 decades, and she has been able over that time period to reduce the amount of tension I carry in my muscles as my baseline (as does my full brother). She has a wealth of knowledge in her own muscular system and brain acquired through more than 30 years of practice.

REPLY
@ajh5285

Thanks for all the suggestions.
Some of what you're doing sounds like myofascial release, which I have tried, and was temporally related to hematochezia which turned over the course of a day into a frank GI bleed that landed me in the hospital.
I have tried acupuncture and wasn't able to stay the course, although it was early on in the course of my illness. I hated the Chinese herbs and disliked intensely the fact that I was supposed to have faith in the acupuncturist, for the therapy to work (I suppose that's my western medical training at play screaming "placebo effect"). My only other experience with the therapy was for a horse that had a spinal cord injury. Again I was supposed to believe that the animal communicator thought it was working. It did not help the horse objectively, and eventually I had to have him euthanized. I might try giving your suggestion of acupressure a try, since I've seen a massage therapist for more than 2 decades, and she has been able over that time period to reduce the amount of tension I carry in my muscles as my baseline (as does my full brother). She has a wealth of knowledge in her own muscular system and brain acquired through more than 30 years of practice.

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The next two questions are very dependent on my husband as caregiver. He is very strict about what he'll feed me; it seems healthy, so even though it's a limited diet, I think I'm eating okay.
I do have a couple of OTC products containing menthol, and briefly I thought one of them gave me some relief from the "chemo feet" problems. However, it has turned into another frustrating exercise, since so very little seems to stay fixed for very long.
I've had a recent ultrasound and the ultrasound technician knew from asking me a few relevant questions that it would be negative for blood clots.
The only symptom that might conceivably be called shortness of breath (a fluttery feeling in my chest) usually dissipates if I can find something to alleviate my anxiety. My vital signs are always within normal limits when checked at all my various medical appointments so I'm not concerned about heart failure. The edema I have in both lower legs follows on horse riding related injuries of many years' standing (pins in one ankle; a missing divot and tissue damage to my right thigh where a horse stepped on me.

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I forgot to mention that I do have compression stockings, but the manufacturer (TEDS?) does not recommend wearing them at night.

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@ajh5285

I forgot to mention that I do have compression stockings, but the manufacturer (TEDS?) does not recommend wearing them at night.

Jump to this post

You’re right, generally compression stockings aren’t recommended to wear at night if sleeping in bed. If someone sleeps in a chair or recliner then they may need to wear some type of support hose to keep the blood moving up to the heart.
They don’t have to be full compression stockings. I have varying levels of compression I wear when I need them. My favorites are athletic ‘sleeves’ they give just the right amount of support and keep my v-veins happy if I have to stand any length of time.
My varicose vein doctor told me the best time to put the stockings on is before getting out of bed in the morning. That way, there’s less chance for swelling and blood circulation issues as the day goes on.

REPLY
@ajh5285

Thanks for all the suggestions.
Some of what you're doing sounds like myofascial release, which I have tried, and was temporally related to hematochezia which turned over the course of a day into a frank GI bleed that landed me in the hospital.
I have tried acupuncture and wasn't able to stay the course, although it was early on in the course of my illness. I hated the Chinese herbs and disliked intensely the fact that I was supposed to have faith in the acupuncturist, for the therapy to work (I suppose that's my western medical training at play screaming "placebo effect"). My only other experience with the therapy was for a horse that had a spinal cord injury. Again I was supposed to believe that the animal communicator thought it was working. It did not help the horse objectively, and eventually I had to have him euthanized. I might try giving your suggestion of acupressure a try, since I've seen a massage therapist for more than 2 decades, and she has been able over that time period to reduce the amount of tension I carry in my muscles as my baseline (as does my full brother). She has a wealth of knowledge in her own muscular system and brain acquired through more than 30 years of practice.

Jump to this post

You know…that’s actually the next thing I was going to suggest…seeing a massage therapist! They can be so helpful during all the treatments for cancer. Even when I was staying at Mayo for my transplant, several times there was a massage therapist who came to my room to work on my neck and back to keep me comfortable. I could just feel the tension sliding away. Alternative medicines can go a long way in keeping us healthy in conjunction with our great doctors.

Myofacial release is exactly what I was talking about. It has made a huge difference in my ability to pursue my hobbies without having neck spasms for days later. That’s where the acupuncture has helped the most, long term. I have a fabulous massage therapist whom, I swear, has magic hands. She specializes in MF release. But sadly, the benefit of the deep tissue massages are fleeting.
So I tried acupuncture and that allows me to live pain-free for about 6 weeks before tension starts creeping back. I know it doesn’t work for anyone. I went into it with very low expectations and was really surprised by the positive and lengthy outcome. For me, I honestly feel it’s much more than a placebo effect since I really didn’t expect it to work at all. 😅
I really hope your side effects from the chemo subside soon. Maybe scheduling a nice massage wouldn’t be a bad idea…

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Thank you. I have actually had a couple of appointments with my long-time massage therapist, and if nothing else the talk therapy improved my mood greatly. We're hoping to fit in a couple more appointments later this month, but as usual the logistics are complicated.

In fact it has just occurred to me that my brother and I should check out the possibility of inborn errors in metabolism, since we were the two people she has worked on in all her decades of experience, with the tightest muscles. My full brother clearly has something going on that fits the diagnostic criteria for "chronic fatigue," the downside being that there's no recognized treatment.

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