Lymphedema update

I realized that i haven't blogged about lymphedema recently. I am pleased to report that it has hardly bothered me at all since getting the big blue Jovi Pak arm sleeve. My last post on lymphedema issues appears to have been in October 2010.

I wear the sleeve every night, adding extra foam pieces to break up edema as needed or to improve the sleeve's fit. Because this sleeve was made to measure, and I bought it when I was in the middle of a flare up, it is just a tad larger than I need now that my arm is stable, particularly in the hand.

I wash it weekly, and so on Sunday nights it fits beautifully, having shrunk the tiniest bit in the dryer. In the next day or so I begin to add extra padding on the back of my hand. By the end of the week I am wrapping some bandaging around the hand, wrist and forearm to provide extra compression, and then I wash it again and start the whole process over.

It was very easy to put on at the airport for our recent flight to Toronto. That meant I could go through security with a naked arm; give myself the injected lovenox an hour before flying; and put on the gizmo and wrap my arm at the end of all these precautions. When flying, I wore it with a glove to provide enough compression in my hand. That was a little too tight, but it did prevent me from having any issues when we landed.

All in all it's been a good purchase, and I am delighted to have full use of my arm during the day when I'm active, in exchange for compression at night when I am sleeping.

Now if only I could get some better sleep. But that's a story for another day.

Lymphedema

I was so worried that my lymphedema would flare up with the hand-foot syndrome and thankfully that has not been the case. I have been continuing to wear nothing during the day and to bandage at night.

A few weeks ago I ordered (through a medical garment provider) a Caresia bandage liner to wear at night instead of wrapping. It's a big blue padded garment, very soft, with foam and stitched channels like quilting that break up edema. Unfortunately, when it arrived it was too big in the upper arm and perhaps a tad too tight in the hand. So the provider, Donna Martin of Martin Medical, will return the Caresia liner and recommended I get a similar but custom made-to-measure garment from another manufacturer.

It's too bad. I was sleeping really well with the Caresia garment, and it was very easy to put on and take off. But because it provided no compression above the elbow, it's not a good choice for me. I hope Donna will be able to return the unusable garment, negotiate successfully with the insurance company to pay for the custom garment, and get a new one to me quickly.

Much better

After a night and a day, the nausea has calmed down quite a bit. Although I spent most of Friday lying on the couch, I feel much better today. The anti-nausea meds made me very sleepy, so one three hour nap turned into a second one after I took a break to eat lunch.

We had been invited to have Shabbat dinner with friends and I felt well enough to go. It was a large crowd of about 12 people, with much laughter and telling of jokes and stories. Not to mention plenty of delicious food, including home-made vanilla ice cream. It was good for my soul to be with people only a few days after chemo.

The hand/foot syndrome is bugging me now. The sole of my right foot and the thumb of my left hand are tingly and just at the edge of painful. At the naturopath's and oncologist's suggestion, I started taking vitamin B6 supplements and have increased the amount of glutamine powder. (I was measuring inaccurately. One of my teaspoons holds two actual teaspoons.) I hope this is as bad as it gets, because I really need to address the lymphedema issue again. After almost a week of doing nothing, my left hand and arm are okay but would benefit from bandaging at night.

Today is supposed to be warm and sunny and I look forward to catching up on a good book and taking it easy!

The morning after

Either my anti-depressants have really kicked in, or I am still getting benefit from yesterday's steroids, because I slept well all night (except for three hot flashes that were borderline night sweats at 2 AM, 5 AM and 7 AM).

I have no nausea this morning; took my second of three Emend tablets and they seem to be doing the job. I even asked Dr G to give his hopefully positive opinion on taking our planned beach vacation, if I continue to feel well.

I feel back to my normal routine today. Walked the dog (sigh... only one dog), hope to be able to see the orthopedist, meet with an estate planning attorney, and attend an afternoon meeting. That would be a lot for me on a regular day, much less the day after chemo.

Even my left arm feels more extended after NOT sleeping in the black plastic orthopedic gizmo. We'll see what the orthopod says about that. Remember, I'm not bandaging for three nights to prevent hand-foot syndrome from starting.

Say it with me. Doxil will be::

Very effective
Manageable side effects
Well-tolerated

First Doxil

Today I received my first treatment of Doxil (doxorubicin). First they gave me a new anti-nausea drug called Emend (given by IV), then i took Decadron (a steroid) and Ativan (for anxiety) orally. Then they finally set up the Doxil. Two chemo nurses sat with me to monitor how well I reacted and to make sure there were no problems. They gave it very slowly at first, then began increasing the speed. It took about 90 minutes - two hours for the whole infusion.

Doxil is a bright peach color, or as one nurse put it, exactly the shade of peach Jello. I don't eat too much Jello but I liked her softer imagery.

I felt quite chatty, especially compared with my morose behavior of the past few days. Either the Zoloft (anti-depressant( is kicking in quickly, or the steroids gave me just enough lift. D and C came to visit and I was able to have good interactive conversations with them both. D called me "perky." Either way, I rose to the occasion and provided the nurses with information they needed.

One bit was about the interaction of lymphedema with hand-foot syndrome. Evidently, if you get this, it comes on for a few days immediately after treatment and then eases. You can help prevent it by taking tepid showers; not using knives or tools; not kneeling or leaning on your arms. So far none of the providers recalls treating anyone with hand-foot syndrome who also has lymphedema. I have left a message with my physical therapist asking about her experience and I'm sure she will call back if she has a solution to offer.

Meanwhile we have decided that for these first three or so days post-Doxil, I will cease all lymphedema management to avoid putting undue pressure on my palms, and then return to night-time bandaging more loosely (if I can do this). At least I have a plan.

We came home with two prescriptions: Emend is given via IV on treatment day, and then via oral pill on each of the next two days. I have oral Zofran to manage additional nausea, should I experience any. And despite his not wanting to order me additional Ativan last week, Dr G wrote a new scrip for Ativan today, so I am covered for both anxiety and nausea.

It all went very smoothly. I was surprised that my counts were high enough to permit starting this treatment, but Dr G thinks it's best to start asap and he's the boss of my cancer. And last Thursday he said in plain words, "Your cancer is going to get better."

Depression update

Although I am still as deeply depressed, I have taken some steps in both directions (including some back into bed).

I contacted my former shrink, who called me immediately and offered to speak with Dr G about anti-depressants. I guess I will hear the results when I see him today and find out about yesterday's scan.

The CT scan required me to drink a bottle of barium solution, then get my port accessed, then drink another bottle of barium solution. Sometime in the midst of being accessed, I vomited up a portion of the barium. The taste was awful, my stress level is sky-high, I had a hot flash and the nurse couldn't quite get the needle in the right place in the port. POOF -- vomit. The nurse then walked me back to the radiology department and confirmed for them that I had indeed vomited and should not drink the second bottle of barium.

From there the scan went smoothly and was over quickly. I asked for a place to lie down for a few minutes and was given a pillow and blanket to soothe me. I practiced my yoga breathing for a while and then was able to meet a friend for lunch.

Lunch was just the opposite of what Dr G has requested in terms of low carb diet. I wanted something gentle on my upset tummy and what could be more bland than noodles with alfredo sauce? I wasn't hungry but forced myself to eat anyway. L and I took a short walk in the sunshine and I went home to crash.

I tried to contact Pacificare Mental Health and get a referral to a psychiatrist who specializes in chronic illness, but was again thwarted. There is only one such doctor contracted in the entire city of Seattle. The one who didn't return my call from Monday. The Pacificare "care advocate" offered me an appointment with someone in Bellevue, but I explained that I have so many medical appointments already, I didn't have the time or energy to drive to Bellevue once a week.

As soon as possible, I wrapped my arm, put on the plastic orthopedic gizmo, took a milligram of Ativan, got undressed and into bed. I got up occasionally, once to take a call from my primary care doc. She insisted that I call her office today and get in to see one of her colleagues while she is on vacation. So on Friday I have rearranged my schedule to see yet another doctor who can hopefully assess my situation properly and begin prescribing me the right medication to treat this depression.

I also contacted my naturopath to get his take on this situation. A friend from my online support group mentioned that when you wear fabric (scarves, hats) over your bald head, you prevent any UV light from reaching your pineal gland. I must ask him about this.

So far it's not affecting me to eat only two meals a day. Skipping dinner three days in a row has not impacted my weight or made me particularly hungry in the morning. I will eat because I know I have to, not because I want food.

What's new

I was reminded today by a good friend that I haven't posted here in a few days. Things are generally okay but when piled together, I find I am in need of professional support.

1. Treatment with Abraxane continues to be very tolerable with minimal side effects. I have a CT scan tomorrow (and get the results on Thursday) which should indicate any response so far. Dr. G's plan is to treat me until he sees a response, then add two more months. I think that puts us at re-scanning in three months, getting the hoped-for response, and maybe ending treatment in November. You can see how so many months of chemo appears daunting to me.

2. Lymphedema continues to bug me in the same way -- too much edema in the hand, which is exacerbated by wearing the sleeve and glove. I've been taking a psychological break by not wearing anything during the day, and wrapping at night. This has gone on for about a week. I was measured for new custom sleeves last week. This new brand is supposed to be worn with a glove of the same brand; together they presumably put less compression on the wrist. A regular sleeve and glove, when worn together as appropriate, put MORE pressure on the wrist, thus giving the potential to increase edema in the hand by forcing more fluid there. More stress from this.

3. The left elbow continues to be stuck at about 40 degrees of extension. Even after wearing the black plastic brace every night for two weeks, over my lymphedema bandaging, I still have only 40 degrees of extension. My therapist worked with me to position the brace in a more effective spot on my arm, which may result in additional extension. Or not. I see the orthopedist next week. I do not sleep well at night while I wear this gizmo and yet it seems to be the only thing that will return full extension to my elbow joint. Again, more stress.

4. Pumpkin's death continues to hit both of us hard. He pops into mind at odd moments. It's hard to close my eyes and not visualize him looking back over his shoulder to see where I am. Having Bobka helps a lot but still...

5. Eating the low carb/low sugar diet that Dr. G recommended is very fatiguing. I am tired of having to think about every bite, having to plan my carbs each day. Yesterday after my low carb breakfast of cottage cheese, fruit and a latte, I was hungry again at 10 AM. A coffee and half a piroshky helped, as did the (rather dry) tuna sandwich later supplied by the Cancer Institute. I didn't eat dinner last night (read on). Today I ate bread at breakfast, which pretty much consumes my carbs for the rest of the day. But at least I felt full.

I feel so overwhelmed by all that I am managing that last week I decided to seek professional help. I had lined up an appointment with one of the two psychiatrists associated with Swedish's Cancer Institute only to discover that neither of them is part of my mental health benefit network. I found this out yesterday, after spending six hours at the Cancer Institute, and was given one name, in all of Seattle, of a psychiatrist who specializes in treating people with chronic illnesses. He has yet to return my phone message from yesterday. I feel I am in serious need of anti-depressants but would prefer this kind of drug to be managed by a mental health professional rather than my oncologist or even my primary care doc, who is not in this week anyway.

When things are too much for me, my preferred method of coping is to go to sleep. I got into bed at 3 PM, with instructions to Rik to wake me if the one shrink called. I did get up a couple of times, but basically I self-medicated and spent 18 hours in bed. I woke up this morning, not exactly refreshed, but feeling more ready to take on a new day. That lasted until now, when I started writing this post.

Long story short, if you don't see a new post from me, it doesn't necessarily mean all is bad. In the past week I also chaired my first meeting of the synagogue board as president; went shopping for makeup with a friend; and laughed through an animated movie. In coming weeks we may go out of town. I appreciate that you all care and I promise will keep up on my blogging as much as my energy permits.

Too much stress

Today started out as a nightmare -- literally. I was dreaming and realized that in the dream I was wearing the wig. Uggh. Not the way I want to see myself.

This was followed by Bobka the dog needing to go out to pee at 5 AM, and my inability to fall back asleep after getting up to let him do so. Even taking half a vicodin didn't relax me enough to sleep again, possibly because I knew I had to get up at 7:00.

Rik woke me before he left the house and I struggled to get started, including a walking the dogs only up the block and back. I had to leave the house at 8:45 for a 9:20 appointment with the orthopedist.

I sat in bumper-to-bumper traffic in the I-5 express lane (!). There must have been something at the Seattle Center, because the traffic cleared up just after the Mercer Street exit. By this time I was already 10 minutes late to the doc and had made an (illegal) cell phone call from the car to let them know. Well, since I used the speaker phone I guess it was legal, but I still had to dial. No worries though; the traffic was completely stopped. It took me an hour to drive about five miles.

By the time I arrived at the office I was out of breath, experiencing high blood pressure and rapid heartbeat. A little ativan calmed me a bit, but I was seriously stressed.

Dr. Wagner the orthopod wants me to try wearing a plastic splint over my lymphedema bandaging at night. I had to approximate the bandaging by wrapping my arm with the cotton-like padding they use under casts. (It took five rolls.) The splint is a piece of black plastic, warmed in 150 degree water to make it pliable, and molded to the shape of my arm. It extends from just below my shoulder to halfway down my forearm. The intent is to relax my arm over the course of eight hours in bed.

Now I have yet another gizmo to deal with. At least I only have to wear it at night. After yesterday's tumble, I told Dr. Wagner that I was seriously maxed out with everything medical in my life and could not promise to be compliant in the daytime. He actually understood, part of what makes him such a great doctor.

I got home eventually and am about to crash on the sofa. Hopefully some extra sleep, followed by cooking a nice dinner for friends, will help me recover my equilibrium. Right now my perpetually half-full glass feels more empty than usual.

A rough day

Yesterday was the first time in seven+ years that I felt disabled.

Between more blood pressure issues that caused stress and anxiety while I was driving (in the rain); frustration with my slow-to-recover left arm and how little I could do at yoga; insomnia, and general fatigue from the cold and wet weather, I actually felt handicapped.

It was mostly the dislocated elbow. But the cancer and treatment side effects added so much more to my whole day that I was full up to my eyes and fed up with everything. Even taking Ativan and only doing yoga breathing didn't help enough.

By the times yoga class was done, and I had eaten something, I realized that I should have turned around as soon as I felt poorly and gone home. But no, I'm too stubborn for that. I had to go to yoga, get some lunch, go to the market AND pick up RIk after school as planned. At least I had the presence of mind to cancel our dinner plans at Folklife.

I was such a poor judge of my own stamina and wellbeing that I took a second 0.5 mg Ativan in the car while waiting for Rik and let him drive. He was great. He carried in all the groceries, put them away, made up the bed with fresh sheets and let me take a nap there while he also fed and walked the dogs.

I slept more than two hours and awoke feeling more like myself, was able to prepare dinner and eat it, wrap my arm with the lymphedema bandaging, and even a read a little. Sleep really is an excellent healer for me and I am sure my middle of the night insomnia had a lot to do with my feeling lousy all day long.

Now the goal is not only to recognize when I feel poorly but to stop and listen to my body, then to go home if that's what's needed. Wish me luck on this. I get my stubbornness from both parents.

Another PT visit

Yesterday's physical therapy showed no real change but also no worsening in my hand or arm. I had been worried that going without a glove would make my arm balloon up, but that does not seem to be the case. So I will continue to wear the glove during the day (with a pad inserted on the back of the hand for extra compression) and wrap at night.

The PT asked me to identify what frustrates me about the glove and bandaging, and since I didn't sleep well last night, I came up with this list:

• damp, dirty-feeling palm all the time
• bulk of bandaging against my palm and around my hand
• lack of gross motor control (I have fine motor control in my fingertips when bandaged but can't grip anything)
• inability to relax my hand
• dependence on anti-anxiety meds to take the egde off when things get too frustrating AND for a sleep aid every night
• cranky mood
• not enough restful sleep

And of course giving up left-handedness while that hand is bandaged: eating, writing typing, personal care, ALL WITH MY RIGHT HAND.

Try eating with chopsticks in your non-dominant hand some time, the way I did on Sunday night, and you'll experience at least some of what I'm talking about.

Checking in - lymphedema update

Sorry that I haven't posted in a few days, but I had almost nothing to say.

I saw the physical therapist again early in the week and my hand is about the same as last time. Clearly the sleeve is still pushing fluid into my hand, even with the glove and nighttime hand bandaging.

We are trying something else now: I will wear the glove only and no sleeve, plus wrap my hand at night. I tried it for the first time today and my arm seems a bit swollen but not much, and my hand is definitely less filled with fluid. In addition, the PT and I agree that I need to see her twice a week, not once a week, for manual lymphatic drainage.

I am getting very tired of bandaging my hand at night. I am taking lorazepam to sleep, and now and then I need some to take the edge off my frustration and anxiety at not being able to do anything while wrapped. Can't hold a pen to take notes at nighttime meetings, can't drive, can't hold a book and have to do everything else with my non-dominant hand. Uggh.

I sure hope this works.

Lymphedema update

At this week's PT visit the edema in my hand and wrist had decreased considerably, but I was still frustrated with being in a sleeve/glove or bandaged about 22 hours a day (except when in the shower and getting dressed in the morning). The physical therapist suggested I try leaving my arm and hand free from when I wake up in the morning until about 11 AM. I have done so for the past few days with seemingly good results.

It's been wonderful to have a few hours in the morning without either the sleeve/glove combo or bandaging. I can leisurely shower, dress, eat breakfast, walk dogs, check email, even run an errand. I had forgotten what it was like to have the full use of both hands without compression of some kind.

It was with regret that I pulled on my sleeve and glove just now. But the therapist says that in a week or so we may have reduced the edema so much that I can go back to my original habit of wearing the sleeve only during the day and nothing at night. I will be glad to sleep without compression or medication as a sleep aid!

More lymphedema news

My left hand seems to be responding well to the therapist's idea of wrapping the hand and wrist only at night. The edema has reduced and the tissue feels softer at the beginning of the day. However, once I remove my glove at the end of the day, the tissue is still firm, but a few minutes of massage helps.

My big concern is my inability to do anything after I bandage my hand (I'm left-handed). I have been pretty home bound at night (don't want to drive bandaged) and of course can't type, hold a pen, cook, hold or grip anything, etc. either. I have to take lorazepam to sleep and know that I will have rebound insomnia from that once I am done bandaging.

But the idea seems to be working!

A double-duty medical day

Today I had two medical appointments scheduled back-to-back.

The first was with the lymphedema therapist, who agreed that there was something we could try to reduce the swelling in my hand and wrist. I've had increased edema there since Labor Day and was willing to try again with another therapist. For months my left hand has been so swollen with fluid that I can barely close it, much less make a fist. Today's evaluation appointment led to one recommendation. I am going to try bandaging my hand and wrist only at night. If I see softening in the tissue (the step before reduction in edema volume), then we will know it works. If nothing happens, all I've wasted is a few nights of good sleep. And if it seems to increase the edema, I will stop. I have three more appointments scheduled with this therapist.

After a ten minute break between appointments (at least the two places were close enough to walk to) I saw Dr. F for the first post-op checkup. She was adorable, calling her work on my tummy so perfect that I could wear a bikini on the French Riviera and no one would know I'd had surgery. (I should have asked her to pay for the trip or at least the bikini.)

Dr. F also did a pelvic exam. I had mentioned that I have some pain after urinating, and she thought it might be due to stitches rubbing against my bladder. The stitches will dissolve. I see Dr. F again in mid-March, six weeks after the original surgery date.

I drove home, felt so ooghy from the exam that I laid down on the sofa, took some vicodin and then some lorazepam to keep me from feeling like I was crawling out of my skin, slept a bit and now am feeling better. (Of course, I also got in my jammies at 6 PM.)

Pre-op talk with anesthesiologist

After talking with the nurse for the pre-op conversation, I asked her about the likelihood of the anesthesiologist using my brand-new power port for the surgery. She gave me the number to the anesthesiologists' staff room, where I was connected to Dr. Jonathan Maron.

Dr. Maron was great. He listened carefully to my question, gave me a complete answer, and all on the fly. I have no idea what he was doing at the moment I called, but he had no way to expect a call from a patient he hadn't met.

He told me that they absolutely could use my port for anesthesia. But if they found during the procedure that I needed fluids more quickly than the port could provide, they would then start a line. Of course, I hope that won't be necessary. I am a hard stick on the best of days and when fully hydrated. Given that I can't drink or eat after 7 AM, my veins will no doubt have shriveled up. And given that there was trouble starting an IV line for the insertion of my power port in late December, who knows what kind of condition my veins will be in?

At least I learned that there are limits to the speed with which a port can bring in fluid.

Dr. M also answered my questions about how best to prep my lymphedemic arm for surgery. We agreed that I should bandage instead of wearing my sleeve and glove. I like this not only because I can leave my arm wrapped for longer periods of time (and can sleep all night this way if needed). It would completely freak me out to find, for instance, that they had to cut the very expensive sleeve for any reason. In a situation like that, who cares about the cheaper fleece and padding?

Some lymphedema improvement

My hand continues to improve somewhat. I have been sleeping without bandaging for about a week. Today I have been able to be without the glove until now, about 3 PM. I also saw the oncologist hits morning and he asked about the lymphedema. He thinks that the improvement in the lymphedema is my cancer not being as active. Huh.

I called the compression garment provider, Mary Catherine's and Daughters, to see if they had a second over-the-counter glove for me. (In May, they forgot to tell me the second glove had arrived and the owner brought it to me while I was in the hospital.) It turns out that they only order a certain number of garments in any given week, and so my sleeves and second glove will likely not arrive until the end of the week of Thanksgiving. I don't know why they have this policy, especially since my insurance company has already authorized payment for the garments. So I have another few weeks to wear the old sleeves and hope they are giving me enough compression. At least they told me they have already ordered the garments. Granted, the sleeves are custom made in Germany, so I knew it would take a few weeks, but the glove? It's an OTC item.

If I hadn't already given them my business, I might be tempted to go to another provider. But at this point it would be more effort to cancel the authorization request and get a new one for a different provider. But I am not impressed with this kind of customer service.

Lymphedema back and forth

I think my hand may be beginning to improve. If you remember, I slept without the bandaging one night last week(?) and then felt I hadn't gotten enough support without the wrapping. Last night after a long day and a hard choir rehearsal, I felt I needed to get some fresh air on my skin so decided not to bandage before bed. This morning my hand seems okay. I am actually not wearing the glove yet and it's already 11 AM.

Could this be an indicator that things are beginning to return to normal? If I can alternate sleeping bandaged and unwrapped, if I don't have to wear the glove all day long but only most or even part of the day, if the new sleeves arrive quickly, maybe my hand and arm will be on the way to normal. The old normal, not a new normal, I hope.

Of course, every time I sleep unwrapped I don't take any ativan and then I get a little rebound insomnia, but what can you do? It's still more comfortable to lie awake in bed unwrapped than to bandage and try to sleep uncomfortably on drugs.

I spoke too soon

My arm felt uncomfortable in the sleeve by late afternoon yesterday, so I am afraid I spoke too soon about no longer bandaging. I wrapped my arm again last night, perhaps a little too tight since I was worried about the after-effects of the night before. Things seem more normal today (at least, "normal" for the past eight weeks).

Wrapping too tight happens infrequently but when it does - ow! Fabric rubs against skin and leaves red marks (dangerous when you have lymphedema, can cause infection if they open). The finger wraps on my fourth finger were too tight last night and I felt as though the circulation was being cut off in my hand because of it.

I will adjust as I return to wrapping every night until I get the special, made-to-order new sleeves in a few weeks. And even taking ativan again didn't help me get better sleep with the bandaging too snug for comfort.

There must be a happy medium. I just have to find it.

A night without bandaging

I gave myself a night without bandaging last night. My arm was stable when measured for a new sleeve last week, and I thought it was time to get off the ativan as well. As an anti-anxiety and sleep aid it's great, but when you take it every night for eight weeks, it becomes habituating.

After eight weeks of this craziness, I am so tired of sweating into the glove, feeling like my skin didn't breathe, and not being able to relax my hand.

I had the usual rebound insomnia after stopping the ativan and tossed and turned every hour all night long. I guess I got about three hours' sleep all together, and I predict a nap will be in my future this afternoon.

But this morning my arm seemed fine. Time will tell whether that is really the case and if I need to wrap again. I hope not, but you never know. One night without bandaging might set everything back again. However, I think it was a risk worth taking.

Final (for now) lymphedema treatment

The PT and I agree that since the manual lymphatic drainage massage doesn't appear to be working, it's time to stop wasting money and time on it. I went straight form PT to order new sleeves and gloves and the provider gave me a new glove yesterday from stock on hand. The new sleeves are made to measure in Germany and take a couple of weeks to arrive. When they get here, I will stop bandaging at night, wean myself off the ativan, wear the new garments and hope for stability.

The good news is that the sleeve provider measured my arm yesterday and each measurement was the same as in April, the last time I had sleeves made. So hopefully the extra puffiness in my hand may resolve on its own, just like it did the last time, and I will be back to my usual daily lymphedema dealings.

One can always hope.