Not very happy camper

My good spirits, cheery disposition, strong will and positive attitude took a major hit on Tuesday. I haven’t written here for several days because everything was going well, relatively speaking (except for the runs and the yucky mouth, general fatigue and the muscle aches and the little sores that are popping up all over my body – the actinic keratoses (pre-cancers) and young skin cancers that the chemo seems to be killing off). Plus Suzie is in town and my Silver Fox was packing to leave, staying one extra day and the next and the next for a variety of reasons.

Yesterday, I had an appointment with a physical therapist specializing in rehabilitative services relating to lymphedema – for the swelling I’m experiencing in my arm and hand. The appointment started on a good note – her name is Gail, just spelled differently than I do mine. But it was downhill from there.

Gail confirmed that I am suffering from positive Stemmer’s sign (you can probably lift up a bit of loose skin on the first knuckle of your middle finger – I can’t anymore). Also, I appear to have some nerve damage from the surgery, causing a weakness in the serratus anterior muscle of my right shoulder blade area (which I can presumably improve with strength training), and I have developed lymphedema – a condition that develops in some women after a mastectomy or a radical mastectomy. It isn’t a temporary condition – it’s for life, after all the other abuse my poor body has been subjected to.

As I mentioned some time back, the lymphatic system is a major player in the body’s immune function and circulation. It consists of lymph vessels located just under the skin meeting up with lymph nodes located in the neck, armpits and groin. As the lymph vessels move fluid out of the tissues, waste products, bacteria, dead cells and large protein molecules are collected, carried to the lymph nodes and broken down and eliminated, and the remaining protein rich fluid is transported back to the heart to rejoin circulation.

When the lymph vessels are unable to transport the lymph fluids back into circulation, it accumulates, resulting in swelling and thickening of the skin. This build-up is called lymphedema. If not treated, it will continue to accumulate.

At this point, I’m more than a little pissed. I was told that this didn’t happen to very many people. But how could it not? I had the entire ‘fatpad’ removed, taking with it all the lymph nodes in the armpit area. So I now suffer from lymphedema, caused by the ‘mechanical damage’ (polite term for the radical mastectomy) to my lymphatic system. And will for the rest of my life. That lovely phrase, if I knew then what I know now, I truly believe I wouldn’t have undergone the surgery. I hope my normal good spirits will reduce my anger and my current crummy attitude.

And the additional good news is that radiation WILL make it worse. I asked questions over and over about the lymph system and none of the answers indicated this was any more than an outside possibility, and easily handled if it did occur. NOT.

Temper, temper. OK – lymphedema ‘may’ develop within a few months after a procedure, years later or not at all. The first obvious sign is swelling characterized by pitting – where the skin is depressed for a few seconds and doesn’t immediately bounce back to normal. Other symptoms may include a tightness or heaviness in the affected area or changes in the texture of the skin.

When the lymph system is compromised, that area of the body will have to work much harder to try to circulate its fluids. When it is unable to keep up, swelling and fluid build-up occurs, requiring EXTERNAL support. I’m already getting angry again as I describe this.

Wearing a compression garment provides external pressure to assist lymph drainage and ‘hopefully’ prevent ADDITIONAL swelling. ‘They’ say that an incidence of swelling is sometimes reversible, but in most cases is not. Meaning this external pressure is a ‘lifestyle’ change…meaning wearing a compression garment – in my case this would mean a tightly fitting glove and full arm bandage every day for the rest of my life…after two weeks of intensive pressure treatments.

‘They’, after mentioning that the swelling is sometimes reversible, say that there is no cure for lymphedena. For the majority of patients, the goal of reducing swelling and maintaining such reduction is achieved by ‘skillful application’ of Complete Decongestive Therapy (CTD). CTD is comprised of four components – manual lymph drainage (MLD), graduated compression garments, therapeutic exercises and meticulous skin care (because the immune system is screwed up and even minor injuries to the skin can become huge problems, cellulitis, requiring antibiotics, plus the skin will be very dry and need regular low Ph level lotions to maintain some level of moisture to protect it from tearing).

CTD works in two phases, the first being to move the fluid build-up out of the region (for me that means my right hand and arm and shoulder area) using manual techniques and bandaging. It is suggested that I undergo this treatment for about two weeks, three times a week. This involves a therapeutic massage to work the current accumulation of fluids out of the arm into the core body area, then applying a tightly fitting compression garment to keep the fluids from building up again – wrapped tightly around each finger and up the entire arm. This is worn continually for 3-4 days (showering should be a delight – washing dishes – driving), at which point it is removed and the procedure is repeated for another 3-4 days for the balance of the two week period. Sounds like fun while undergoing chemo. Then it’s the ‘graduated compression garments’ worn every day for life. Gail said I ‘might’ be able to remove it for an hour or two if I was going out someplace really nice.

At this point, I’m seriously considering saying no to radiation, and I simply cannot imagine wearing a fucking compression glove and arm bandage for the rest of my life. Suzie and I have talked about wearing a long lacy black glove over the damned thing, or painting it up fancy like I’ve painted my cane, but… Again, hopefully my attitude will improve after the shock of this wears off. Jack Daniels last night didn’t help, but maybe time will.

It is presumably beneficial of avoid injury or overexertion, avoid heat (easy to do here in the desert), no hot showers or baths, no hot tubs, avoid insect bites (yeah? How? The little no-see-ems we have here have no respect for rules!), no tight fitting clothes, avoiding jewelry unless it’s loose enough to fall off and get lost… don’t carry anything heavy, no shoulder bags or groceries or luggage. Eat healthy fruits and veggies, avoiding fatty foods, salt, sugar and alcohol. Sweets? No chocolate? Not gonna happen! Avoid extreme temperatures (‘over 90’ – here we go again, avoid over 90 here in the desert?).

I am a very unhappy camper. Can you tell? I have to do a lot of study before I go any further with this. Perhaps my humor will improve.