Not Down Or Out

It could be worse. I might not be laughing.

Tag: radiation cystitis

Checking In

Back at the hospital

This morning I went for my six-month exam. Other than fatigue from having survived a swift move, I have been feeling well. In late February/early March. the daily, serious pains associated with radiation cystitis abruptly stopped. In June I determined that the other side-effects of cystitis–distress and incontinence–were well behind me. I stopped taking the Oxybutynin that had been prescribed for me. My bladder and bowel seem to have healed from the effects of chemotherapy and radiation.

I have had several “clean” pelvic exams and tests for cancer cells. My last scan was June of 2012. It showed no signs of cancer. In October it will be twenty-four months since my hysterectomy. In December it will be twenty-four months since treatment ended. I was thinking there would be a scan and blood tests, but there were no tests today.

My oncology team wants me to undergo surgery to correct a pre-hysterectomy hernia. The surgeon who originally diagnosed my cancer was going to repair it as part of my hysterectomy, but he ended up having someone else perform the surgery. That doctor did not touch the hernia. But it was in the way of his reaching my lymph nodes. As a result, no lymph nodes were tested–which explains why my chemotherapy and radiation treatments were “adjuvant.” They addressed risks unknown. I learned that the scans also can be confounded by the hernia, and that my radiation was more extensive because of the state of my “habilis.”

Everything looks good right now, but, if cancer were to return, everyone would feel better if things got “tidied up.” There’s no question but that I would like to get this addressed as well–EXCEPT–I do not have health insurance, I do not have the money to pay for this surgery, I am about to start school and cannot imagine undergoing surgery during “school time,” and the very thought of checking in to the hospital after my December 2011 experience there is out of the question unless it would save my life.

I am returning this week to teaching at the law school that terminated me the day of my hysterectomy. The law school is facing declining enrollments and has decided to cut the compensation paid to adjuncts, like myself, by 40%. At the same time, it has increased class size by 25%. The school has conducted its own internal investigation of my case and has cleared everyone involved of any breaches of university policies.

I suppose that means that the school would support my termination a second time if I underwent surgery–even if my surgeon said, “You can return to work next week.” That’s what the surgeon said last time.

The EEOC is examining my case now. I would like to wait for the results of that investigation before chancing fate on the subject of job security. As if an adjunct has any job security.

The Affordable Care Act will go into effect this fall. I would like to wait to see whether I can afford insurance when the new exchanges open in my state. I might have new options for treatment at a hospital that does not scare me.

The doctors think the charity that covered so much of my post-surgical care would agree to pay for this surgery if I appealed to it. That will take some time.

The doctors want me to go now for a mammogram. My cancer was estrogen-related. Some breast cancers are estrogen-related. So, I’ll do that. My maternal aunt died after more than a decade of dealing with breast cancer, so I will have the test.

My weight had dropped somewhat. My blood pressure was much better. I’m only taking a water pill for that. The doctors put off until my next check-up an ultrasound of my legs that might rule out varicose veins as the reason for my sometimes swollen right leg. No one else reacted when I mentioned the possibility of lymphoedema–which means nothing. I know that it could be the reason for my swelling from reading the excellent blog http://lymphnodetransplant.wordpress.com/. Check it out if you have unexplained swelling after surgery or other treatment that might have affected your lymph nodes’ ability to function.

I am seeing a GP in late September. I see the P.A. for another gynecological check-up in October. I can investigate my insurance/charity/surgical options between now and my next oncology appointment in February 2014.

I am feeling relieved to have gotten through this check-up, but my definition of “relief” has changed from “phew” to a sort of uneasy reduction of the alarm level from orange to yellow.

Photocredit: ripsaw-defence.co.uk

Photocredit: ripsaw-defence.co.uk

A lot can happen in six months. And I have some checking to do before checking in again with my oncology team.

Catastrophizing

Feeling snowed under.

Feeling snowed under.

Did I mention that next Friday I have an appointment for a gynecological exam and will likely see the “oh-so-very-NOT-nice” physician’s assistant whose examination of me left me upset for weeks? Did I mention that this has me feeling very anxious–as do all doctors’ appointments?

The best part of blogging has been reading the blogs of people whose situation has been worse than mine. I know how that sounds. But the other bloggers’ sharing has given me a perspective on my own experience that I could not have gotten from my own experience if I chewed on it until it was fully consumed and digested–a process that might have taken my whole life.

Until my diagnosis with cancer, I had never had an operation. I had never suffered a serious illness. The most serious medical procedure done on me was the inpatient removal of a mole that was chafed by a bra strap. The most serious pain I had ever experienced was passing a kidney stone at about the age of 20. That experience proved more humorous than serious.

While I was in the emergency room to determine the cause of my pain the doctor decided to perform an internal gynecological exam to rule out some gynecological problem. Following the exam, I continued lying on the table while I waited for results. Then a hospital administrator escorted a university student into my curtained “bay” so that the student could ask me questions about my use of contraceptives for some classroom statistical analysis. I agreed to answer the questions. The administrator helped me sit up. The nurse had not properly secured the end of the table when she took down the stirrups at the conclusion of my exam.

When I sat up, the end of the table fell down and I was catapulted to the floor. I landed on my hands and knees with the hospital gown open from neck to knees. I landed outside of the narrow confines of the curtained bay. There I was, naked and on all fours, in front of everyone, including someone with whom I went to school.

It goes without saying that there were apologies, and many hands reached down to help me rise, and no one laughed. Which seemed amazing to me at the time, because I could not stop laughing! Seriously, the pain from the kidney stone was the worst thing I had ever felt in my physical life. My hands and knees “smarted” in a way that had me thinking about that old adage, “Come over here and I’ll give you something to cry about.” I was blushing the color of a beet until it seemed every inch of my face might explode. And everyone was looking at each other like it might be the end of the world.

It wasn’t. The adage proved to have some relation to fact. There were worse things than the pain I experienced from passing a kidney stone. I could be in even worse pain, naked, on a germy ER floor, in a down facing dog position as others (one of them a fellow student holding a clipboard) tried to get hold of “something” naked, in an non-salacious manner . . . in an effort to help me stand up. Oh, the perspective this gave me helped me accept many of life’s indignities that have followed.

I still have not had a good cry about having uterine cancer. I am not sure I need to at this point. I was nonplussed when I received the diagnosis. In retrospect, it explained so many things that I had been experiencing such as heavy periods and a late end to menopause. I reacted by trying to put the entire puzzle together. I also had a very fatalistic idea about what it meant to have cancer. I just assumed that my life was over and was trying to figure out what I would need to get done before I died. Making checklists is a hobby. I never did make out that checklist.

The doctors were much more optimistic and they were being extraordinarily negative. Their entire focus at the time seemed to be on my inability to survive surgery because of my blood loss (I needed 8 packs of blood to reach a minimum state of readiness for surgery) and my seemingly poor general health. But one doctor, the head of the internal medicine department, kept coming back to report that I had passed another of his department’s tests. It appeared that I might only have anemia and cancer.

I counted my blessings day and night. I am serious about this. I did not have a book to read. There was nothing I cared to watch on TV, and I had no idea if I was being charged for using it and had no medical insurance. When my sister Kathy flew in from DC she brought me two magazines, a pen, and some paper. I loaned a magazine to my roommate and covered the paper with my scribbled lists of blessings. If my luck had run out, then I wanted to recall that it had been a good run. If the Law of Attraction was at play, then I wanted to be in a positive place to attract good health.

I did not sleep for nearly a week (other than during surgery). The closest I got to it was that micro sleep you sometimes feel happening during a long drive. One minute you are on the turnpike in Indiana and the next minute you are seeing signs for exits to Cleveland and are wondering, “What the hell happened to most of Ohio?” You have been functioning, but not optimally.

I have shed plenty of tears since October 2011. I was devastated to learn that the law school terminated me. Radiation was a nightmare. The week after treatment ended was horrific. To this day I feel like I might have died but for my sister and mom “springing” me from the county hospital. I have never been so afraid or helpless. Recovery from treatment was marginally worse than what I felt while going through six weeks of radiation and chemo. Radiation cystitis had me crying twenty-something times a day in the bathroom until that became such old hat that I just gritted my teeth and endured.

But others’ blogs were like speed markers on the road that let me know I should pace myself on my tendency to manage fear by imagining myself handling the worst case scenario. No one ever knows what will happen next or how she will handle it. And the saddest truth about cancer is that others have handled/are handling much worse than I can imagine on my own. They do manage. Sometimes angrily. Sometimes with frightening resignation. Often with grace, humility, and even humor.

I am covering my mouth with both hands and trying not to cry as I think of what some have shared about their experiences. I know that my odds are good for long-term survival. It was stage one with complicating factors, not the stage three cancer the surgeon first described it to be. It was a slow-growing cancer. There appears to be no evidence that cancer spread or remains. My surgery went very well. I am no longer in daily pain. My other side-effects can be handled.

When I agreed to adjuvant radiation and chemotherapy I did not know that they could one day lead me to another cancer. I was awake, but still in that stage of micro sleep. I just kept driving until I saw signs for Cleveland, one of which is an exit marked Strongsville. I took that exit and have put down some roots. I could spend my days catastrophizing, but that might only make this tougher.

Source unconfirmed

Source unconfirmed

The bloggers who have shared their struggles and victories are daily reminders that I should live in the “now” and not get ahead of myself. Whatever is ahead of me will be handled–ready or not–and handled better if I focus on the present and do not let anxiety rule me.

There was a time when I could laugh at the experience of landing naked and in pain on the ER floor while answering questions about condoms and diaphragms. It’s harder to do that when you’re dealing with cancer. But I still have a sense of humor. And I have been shown by some wonderful people that there are worse situations and that I can face them if I must. Life is worth it until it isn’t. And, even then, there will be hope that life’s ending can be endured.

So, I am every day grateful for the community of bloggers who have so bravely shared their challenges and fears. Without your courage and generosity, I could be wasting my life catastrophizing.

If you have never seen Loretta LaRoche, you should. She is the source of the word “catastrophizing.” http://www.youtube.com/watch?v=ggGoe_y5WqA. In that video she talks about how we can sometimes take our tough challenges and magnify them until we become hopeless. Here is a link to a video of her discussing the Joy of Stress: Party Pants, in which she reminds us to embrace life’s adventures rather than always putting joy off. http://www.youtube.com/watch?v=_5tOFdSJZJk. Here’s her video on Pessimism vs. Optimism. http://www.youtube.com/watch?NR=1&v=kqE9cuWxdqo&feature=endscreen. She uses humor to help people handle stress. Her message is resilience. I think she may also be reading many of the blogs that I read about living after a cancer diagnosis. She seems to understand that we can keep smiling–sometimes for a moment, sometimes for a day, sometimes longer.

Did I mention that next Friday I have an appointment for a gynecological exam and will likely see the “oh-so-very-NOT-nice” physician’s assistant whose examination of me left me upset for weeks? Did I mention that this has me feeling very anxious–as do all doctors’ appointments? Maybe I’m already feeling better because of the messages of hope in so many other people’s blogs.

Jingle-ing, Ring-ting-tingle-ing, Too

Windchimes

Just hear those sleigh bells jingle-ing, ring-ting-tingle-ing too . . . .

Sleigh Ride, Mitchell Parish (1950).

Bells Jingle-ing: The abatement of my radiation cystitis has made life so much more pleasant. I wake up without fear of the high level of pain I experienced every time I entered the bathroom. Now I am free to notice some of the other side effects of cancer treatment that barely registered before now. Of these, the most persistent is tinnitus.

My ears ring every day, all day, as long as I am conscious. It is not a musical sound. Instead, it is like static. It disrupts the peacefulness of an empty house or a remote location. My only relief from the ringing is when I sleep. Sleep has often eluded me and never been so peaceful for me as it is now. My longing for sleep is not occasioned only by the desire to experience silence. It also is a result of cancer treatment. I have never experienced as much fatigue as I have since undergoing adjuvant cancer treatment.

In my case, the specific cause of the ringing in my ears appears to be the chemotherapy drug Carboplatin. The National Institutes of Health report that Carboplatin significantly increased the number of cases of tinnitus among a test group of veterans who did not have tinnitus before undergoing treatment:

RESULTS: Baseline tinnitus rates were high (nearly 47%) relative to the general population of a similar age. Subjects with exposure to ototoxic medications had significantly increased risk for developing tinnitus. Those on chemotherapeutic agents were found to have the greatest risk. Cisplatin elevated the risk by 5.53 times while carboplatin increased the risk by 3.75 over nonototoxic control medications. Ototoxic antibiotics resulted in borderline risk (2.81) for new tinnitus. Contrary to other reports, we did not find that subject factors (increased age or pre-existing hearing loss) or treatment factors (days on drug or cumulative dose) contributed to rates of tinnitus onset during treatment.
CONCLUSIONS: This large prospective study confirms that new tinnitus during treatment is associated with chemotherapy and with certain ototoxic antibiotic treatment. Cisplatin and carboplatin were found to be the most potent ototoxic agents causing tinnitus at much greater numbers than the other drugs studied. Implications for counseling and audiological resource allocation are discussed.

http://www.ncbi.nlm.nih.gov/pubmed/20701838 (study concludes tinnitus rates rise among patients taking Cisplatin and Carboplatin). Various studies confirm the link.

The following chemotherapy drugs have been reported to cause hearing problems in 10 percent to 29 percent of patients:

Platinol® (cisplatin)
Paraplatin® (carboplatin)
Mustargen® (mechlorethamine)
There are many other drugs that may cause hearing problems in some people. Some of the common ones that cancer patients may be taking include:

Aspirin (high-dose, long-term use)
Aminoglycoside antibiotics: erythromycin, gentamycin, tobramycin, or streptomycin
Antinausea medications: Phenergan® (promethazine).
Diuretics: Lasix® (furosemide), Diamox® (acetazolamide)
Heart and blood pressure medications: Lopressor® (metoprolol)
Nonsteroidal antiinflammatory drugs (NSAIDs): ibuprofen, Aleve® (naproxen sodium)

https://www.caring4cancer.com/go/cancer/effects/lesscommon/hearing-problems.htm.

Some report that the ringing stops at some point after the conclusion of treatment.

Changes in hearing
This is very rare if you have standard doses of carboplatin. But if you have high-dose treatment you may develop ringing in the ears (tinnitus) and may lose the ability to hear some high-pitched sounds. This side effect usually decreases when the treatment ends. Let your doctor know if you notice any loss of hearing or tinnitus.

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Carboplatin.aspx.

Others noticed the ringing during treatment, including many people in my age group.

On Apr, 19, 2013: 27,681 people reported to have side effects when taking Carboplatin. Among them, 61 people (0.22%) have Ear Buzzing. . . .
Age of people who have Ear buzzing when taking Carboplatin * : . . .
0-1       2-9      10-19 20-29   30-39   40-49  50-59   60+
2.08% 0.00% 8.33% 2.08% 2.08% 8.33% 47.92% 29.17%
. . . .
Top co-used drugs for these people * :
Cisplatin (25 people, 40.98%)
Taxol (21 people, 34.43%)
Taxotere (14 people, 22.95%)
Decadron (13 people, 21.31%)
Morphine (13 people, 21.31%)

http://www.ehealthme.com/ds/carboplatin/ear+buzzing. I took Taxol at the same time as the Carboplatin.

It has been about sixteen months, and the ringing continues for me.

It appears to be the platinum in Carboplatin that damages the ears.

Platinum-containing drugs, such as cisplatin and carboplatin, are known to have ototoxic side effects causing hearing loss that may be accompanied by tinnitus. This study reviews recent studies on the ototoxicity of cisplatin and carboplatin and summarizes the effects of protective agents that may prevent hearing loss and tinnitus. The primary locus of ototoxicity is in the cochlea, but oxidative stress to the inferior colliculus has been reported recently with carboplatin. Enhanced spontaneous activity within the dorsal cochlear nucleus has been correlated with loss of outer hair cells in animal experiments using cisplatin. This may result from disinhibition of neurons within the dorsal cochlear nucleus caused by reduced input from spiral ganglion cells. Carboplatin may cause tinnitus by oxidative stress within the inferior colliculus or by loss of inhibition within the inferior colliculus resulting from cochlear damage. This could lead to compensatory gain and enhanced responses in neurons within the auditory cortex. Protective agents may prevent tinnitus by preventing damage to the cochlea, thereby obviating the development of disinhibition within central auditory pathways.

http://www.tinnitusjournal.com/detalhe_artigo.asp?id=417.

Ring-ting-tingle-ing, too: I also have peripheral neuropathy. My fingers sometimes tingle. Most of the tingling occurs when I am tired. It is more noticeable at night than during the day. Many cancer treatment patients report neuropathy. This is one patient’s posting at the Cancer Survivor’s Network about the links between chemotherapy and neuropathy:

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

http://csn.cancer.org/node/188490 (gdpawel).

I was not told about these effects before treatment nor asked about them during or after treatment. I am not whining about this. I probably would have accepted these risks if I had known of them. But I cannot help but wonder what other revelations lie ahead.

Sleigh Ride: It’s not Christmas, but I sometimes feel like I am on a runaway sleigh ride with Billy Bob Thornton directing my trip (reprising his role as Bad Santa) and Will Ferrell giggling for no logical reason (reprising the role of Buddy in Elf). I strive to remain jolly here  at NotDownOrOut!

Spoilers

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I love that my lamp is “missing” a hand. When I saw it at Tuesday Morning I figured the lamp was there because it had been broken, but I now am convinced that the hand is not “missing” at all. Sometimes an object is perfect because of what is not there.

I have been so happy these past few days because my bladder does not hurt. I cannot help myself. I wake up in the morning and the thought of walking down the hall to the bathroom is just something I should do. It is not the beginning of a nightmare.

I come out of the bathroom and I can remember where I was going or what I was doing before I entered the bathroom. For so long it seemed that visiting the bathroom was like ellipses. Life started. It paused. It resumed. Something in the middle was missing. Unless you had a video camera or a Dictaphone to catch the interim you might not know what it was like. It was ugly. Now it is just gone–not missed at all.

Of course, some will look at the lamp and think that the figure at its base is deformed. They will note the lack of symmetry. They will wonder what it is like when the left hand cannot possibly know what the right hand is doing. Some will realize that the figure cannot lend a hand to others without somehow hurting himself. A few may worry that the figure will need help they have no time to provide. One or two will not be able to help themselves. They will wonder what the figure did to deserve this condition (because blessed people, positive people, or health-conscious people avoid calamities, don’t they?). Some will just think, better he than me. Some will think, I have suffered worse.

I am not missing the spoilers either. Neither am I listening to them. The lamp feels whole just as it is. I am just going to be happy today. I hope your day is happy, too!

After I posted this, I received an email from someone who wanted to know whether, by announcing I am no longer in daily pain, I was sacrificing my opportunity to remain “special”–someone marked indelibly by my experience with cancer. I had never thought of my pain as an advantage that was giving me some status that drew attention to me. I still do not think of my experience that way. I am grateful for the insights this experience has given me. I appreciate others’ experiences so much more keenly having seen what some aspects of a cancer diagnosis are like. I ache for people whose circumstances, resources, or outcomes have made the situation so trying.

But recovering from radiation cystitis isn’t going to change that aspect of this experience. Moreover, now that I am feeling better, I hope to be in the position of helping some others as they continue to go through their experiences. Moreover, my “specialness” has caused me to be the target of employment discrimination, and I believe I continue to be the target of some retaliation in the workplace. I don’t think others’ attention or sympathy was ever a salve for those wounds. Moreover, I have yet to meet a cancer survivor (although I recently read something about one) in which the message was that the person would choose to have cancer because it made him or her feel special. Even that person was not focused on the specialness. Her focus appears to have been on the fact that the fire of her trials in some way transformed her nature to draw her closer to her God.

If you have ever considered cancer this way, I’d be interested in hearing more about that. But here’s a spoiler alert: I would tell you what I told the person who sent me the email query, I feel confident that what makes you special is something about your character or personality or behavior other than the fact that you may have a potentially deadly health condition. But I’m open to hearing others’ views!

Just Around the Corner

If you are about to start or are in the middle of pelvic radiation therapy, do not read this blog posting.  Trust me when I say that my experience with the treatment was uncommon and unpleasant and you would do better to focus on positive thoughts. Moreover, my experience has a happy ending so there is no need for you to entertain any negative thoughts.

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I do not want to jinx the situation, but I may have reached a breakthrough in my recovery from adjuvant radiation therapy following my diagnosis with uterine cancer and hysterectomy. This week I have gone hours at a time without any significant pain due to radiation cystitis. It is 11 p.m. on Thursday evening, and I have not had any pain today that I would rate higher than a 4 on a scale of 10 with 1 being minor pain and 10 being enough pain to make me cry out loudly. This is the single best day that I have had since mid-December of 2011.

My chief physical complaint after six weeks of chemotherapy and five weeks of radiation was radiation cystitis. I bled from the bladder for some time during, and for a couple of months after, this treatment. In December of 2011 I was hospitalized for a week only a few days after this bleeding started. At that time the pain was so terrible that I sobbed every time I passed urine.

As blood clots started forming in my bladder I became incapable of passing urine at all. The blood clots pictured below are small ones. Matters got much worse. I had to struggle to eject the clots through a burnt urethra while tears ran down my cheeks. A day or two after I took the photograph below I had to have a catheter put in place to help me pass the blood. I received repeated injections of heparin in my stomach to help break up the clots and make them easier to pass. A bladder infection made an already painful condition even more excruciating. I had to stop radiation therapy treatment. My physician had planned for me to undergo internal radiation (brachytherapy) for a week after my five weeks of external radiation therapy, but decided I might lose a previously healthy bladder if I had that treatment.

When I got out of the hospital I was a mess. My bladder did not stop bleeding and it was some time before I stopped passing clots. I have never given birth, but it felt like every trip to the bathroom was “labor.”

But for the fact that my sister Kathy came out to take care of me, I probably would have gone home and stayed there for a month. With Kathy’s help I returned to work and functioned. She drove me to work every day and worked by computer while I taught classes. She slept on the couch in the next room or sometimes at the other end of a sectional sofa so that she could help me get up when my bladder was so inflamed that I went to the bathroom every ten minutes. She kept my water glass filled twenty-four hours a day. She did the grocery shopping and cooked our meals. When the pain passed beyond 10 and nothing eased it, she stroked my hair and prayed with me for the strength to keep going until the pain would pass. I cannot tell you how scared I was. I only know that my sister was there for me every minute of the day.

At the end of January of 2012 a urologist looked inside my bladder with a camera and found the contents murky with stalactites of injured flesh all over the lining of the bladder. I felt tortured. I started taking Oxybutynin to address the constant urge to urinate. Even after I started taking that medication the pain continued. I used to track it in a diary and the pain was consistently in the 5 to 10 or higher range. I had one 8 hour stretch in the entire year of 2012 without pain.

This year I decided to stop recording frequency and pain levels. I think this change in my behavior was good for me. I stopped living from hour to hour and stopped thinking about the fact that little changed no matter how much time passed. Earlier this month I had a second block of time without noteworthy pain. Ever since then there has been some improvement. I am starting to think I have turned a corner.

I might get better after all. And that prospect is so wonderful that I have been afraid to admit just how much I long for it. But tonight I will send a copy of this posting to my sister and several of the friends who saw me through this trial (minus the gross photograph), so that they will know that, thanks to them, I see a path before me that is much easier to walk. I could not be more grateful to my family and friends for their support. Their strength and the strength I felt because of my faith and theirs has seen me through.

If you have also experienced radiation cystitis and are wondering whether it will ever get better, well I believe it can! Feel free to skip the graphic and gross photograph that follows if you are squeamish.

 

 

 

 

 

 

 

 

 

 

 

 

 

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Alternative and Other Remedies

Ever since my sister-in-law Lisa told me that selenium might help me keep my hair through chemotherapy, I have been exploring some alternatives to conventional medicine for dealing with the side-effects of cancer treatment.

I took the selenium before chemotherapy started and for several months after stopping chemotherapy. Then I switched from selenium supplements to biotin. I still take the biotin daily. I never lost enough hair to warrant shaving my head. Moreover, I did not lose all that much hair until after chemotherapy had been over for several months. My hair came back pretty well, too. I have been getting it cut every month for about a year. I still don’t have much hair on my arms and legs and what is there is baby fine and snowy white, but the hair on my head is thicker, wavy (rather than as straight as it was before treatment), darker, and less gray than it was before. I have more and darker eyebrows and longer eyelashes.

My doctor advised me not to take probiotics during chemotherapy because they are bacteria and chemotherapy lowers immunity to infection. She felt that the probiotics could cause problems but had no problems with yogurt. About a month after I finished chemotherapy, I started drinking kefir. Then I added probiotics. I stopped that after a month.

I drank two gallon jugs of aloe vera juice mixed with other juices during chemotherapy and radiation. The taste? Blah. But I have read this is good for easing bowel problems and is anti-inflammatory. It did not hurt and my doctor had no objection to it.

It took quite a few months before my bowel, which was treated with radiation, was up to the challenge of meat, vegetables, and nuts. I still go easy on nuts, but I can tell that there has been healing. Dominique brought me aloe vera juice to drink during chemotherapy. I mixed it with apple juice and spearmint tea. I don’t know if it helped, but it did not hurt. I never threw up once during chemotherapy.

I drank ginger ale during chemotherapy if I longed for something fizzy. I also overcame my distaste for it and drank Gatorade and Pedialyte when going through chemotherapy. I tried a ginger tea, but could not tolerate the taste of it. I found spearmint tea much better than that. I drank it hot and cold every day.

My tongue looked terrible for nearly a year. It had yellow marks on the sides and was very sensitive to the touch. The probiotics seemed to help, but I finally tried acidophilus and at last saw those marks disappear.

During chemotherapy the backs of my hands developed calluses as if I worked hard with my hands. I scrubbed them with a nail brush in an effort to wear away the thickened skin, but it was unrelenting. I tried several types of lotion in an effort to fight the calluses. Eventually, I tried Cackleberry Apiary Facial Night Crème applied several times daily. My friend Dominique got it for me from a farm in Wisconsin. The website is cackleberryapiary.com. My calluses are gone. I now use the crème on my neck. It smells a little like honey. I have switched to using a hand cream that my former student Joelle brought me from Israel. It’s called Sea of Spa. I know, it seems like the words are out of order, but the lotion feels fantastic.

My fingernails have been a nightmare to look at it when bare. There were ridges and white marks. For many months there were yellow bubbles that looked like orange juice stains deep in the nail bed. On several occasions the markings grew out only to return. In addition, my nails peeled sometimes until they seemed ready to peel off. I soaked them in water. I scrubbed them with a paste of hydrogen peroxide and baking soda. When they were thick enough to withstand it, I lightly buffed the surface off of them in an effort to get past the markings. Every month the markings came back. There were divots, too, unexplainable really. I have kept them sealed under nail polish all of the time. I was starting to think that there might be an infection in my nails when I read about someone treating infections with 100% tea tree oil. I started brushing it onto clean nails before using nail polish. It did not seem to be helping until this month. I am down to one nail that still shows signs of white marks and one nail with a single divot left in it. Those marks appear to be very close to growing out.

I had open, red burns on my hips, flanks, and stomach from radiation burns. Ugh. They were raw and painful. When I was in the hospital in December of 2011, one of the nurses covered them with Coloplast Citric-Aid Skin Paste. It is used to form a thick paste barrier over severe skin irritation from incontinence. It was wonderful. One of my sister’s friends sent me a topical cream by Align Pharmaceutical called Xclair cream. It is for radiation dermatitis symptom relief. I think it helped the burns to heal. I can no longer see the marks.

I take supplements now: a multivitamin for women over 50 years of age now that my iron level seems back to normal, fish oil, cranberry, Reservatrol, green tea, biotin, tumeric, and lots of cinnamon. Every couple of months I switch things up a bit, reduce some of the supplements to three times a week and introduce something new.

I have been taking Oxybutynin for incontinence brought on by radiation cystitis. It has been about three months since I developed red spots all over. One theory is that the medicine caused the spots. They are no longer forming big, strawberry-colored splotches, but they are still there. Nevertheless, I have no intention of stopping the medicine at this time. It has made a tremendous difference to the quality of my life. I may have to deal with radiation cystitis for the rest of my life, but I no longer live in fear of that loss of self-control that had me running to the bathroom every few minutes for almost three months.

I have tinnitus now. I never had it before. I have read that it can be a side-effect of chemotherapy, too. If anyone has had any luck in treating it, I would appreciate knowing what worked for you.

There are plenty of cookbooks for people who have had cancer. I have bought a few and have realized kind of late in the game just how bad it might be that I have eaten so much yogurt, cottage cheese, and hard cheese this past year. It seems like it spurs hormones that have been associated with breast cancer and ovarian cancer. My cancer was uterine, but research indicates that uterine cancer also may be stimulated by hormones. It is not a stretch, I think, to be concerned about the hormones in dairy products for my form of the disease, too. I plan to reduce my consumption of dairy foods. I try to eat some apples, cauliflower, broccoli, or cabbage every day.

I am steering clear of sugar except for the occasional celebration. It seems as if all cancers feed on sugar.

The veins in my hands were used every time I received chemotherapy. Some of them look sort of gnarly even after fifteen months. I am not sure what, if anything, can be done to help them heal.

If you have benefited from any type of alternative or other treatment for the side-effects of chemotherapy or radiation treatment I would appreciate hearing about it. My oncologist is excellent, but I do not get any type of advice or support for going forward at my county hospital. I am very interested in hearing what things other people are trying.

Pain Relief

Wednesday, February 27th was the first day since December 2011 that I passed the entire day without bladder pain. That’s right, my previous record of painlessness was about eight hours and it was in spring of 2012. The pain-free experience ended and the pain has already returned, but the experience has given me cause to celebrate. There is no treatment that has been offered at Stroger Hospital that would cure radiation cystitis. My friend Mary discovered that time spent in a hyperbaric chamber could help, but there is no such chamber where I receive treatments, my doctors are skeptical of the utility of such treatments, and I have not sought treatment at a nearby clinic that sells 1 hour stints in its hyperbaric chamber to people wishing to be more fully oxygenated.

I have been taking a drug that reduces spasming of my bladder. It has successfully managed the other side-effect of cystitis–incontinence. Of course, the medication has its side-effects. I continue to be covered with pinpoint-sized red dots on my lower extremities. That has been happening since the start of the year. The dermatologists at the hospital are not certain whether this is a side-effect of the medication I take or is the rest of a new, nuisance-level immune disorder. I already had decided to put up with the splotches of red rather than discontinue taking the drug that might be causing the condition.

There are many things in life that prove to be acceptable when the alternative is worse. For me, the pain I have been experiencing–like the red spots sprinkled over my legs–has been part of the price I pay for wanting to do all I can to prevent the return of cancer.

The pain has been wearing at me. Some days it has reduced me to tears. Some days it has continued for hours rather than ending when I have emptied my bladder. Every day it has been something I anticipated, feared, or tolerated. To have had an entire day without it was most excellent.

If you know what it is like to have pain (physical or emotional) every day then I pray this morning that you also will have such a day. Already it is giving me renewed hope. Hope is more intoxicating even than depression. It is like the first pings of popcorn in a covered pan. It is like the pop of a cork from a bottle of something bubbly. It is like the warmth of the sun when it comes out from behind a cloud on an overcast day. It is like the smile of a friend you have not seen in a long time. It is like a memory of a happy time that pops into your mind in the moment before you wake up. It is so wonderful that you question whether it happened at all because it is tough (but not impossible) to sustain the feeling when pain returns. It makes up for quite a bit to have such an experience.

I am using that sense of optimism to hope and pray that this will be the first of many pain-free days for me and for all of you have pondered the opening words of Paul Simon and Art Garfunkel’s The Sound of Silence: “Hello, darkness my old friend. I’ve come to talk with you again.” It may build character to face pain without rancor, but it is a far more wonderful thing to not face it at all.

Voice Over

I needed to refill a prescription for a diuretic I am taking. Imagine taking a diuretic while taking a drug like Vesicare to keep my pipes from springing a leak. As in my own field of law, the medical profession seems intent upon engaging in inconsistent behaviors.

I called in the request for the refill last week. It takes three to five business days to get a refill. On Monday morning I woke at 5:00 a.m. and headed for the hospital. It was cold outdoors, but not as bad as it has been. My car’s thermostat read 28 degrees as I backed into the alley and proceeded to drive in the icy ruts left from the last good snow.

I got a good parking space and hunched down in my seat to wait until the elevators would open at 7:00 a.m. It soon became a bad space as someone parked an enormous SUV next to my Kia Soul. The other driver did not see me there. She wound down her window and bent my side view mirror in toward my car so she could open her door. Then she wriggled and shimmied her way out of that beast. She left even less room between the back ends of our vehicles. She used her coat to wipe the salt residue from my car as she squeezed her way out. Then she saw my reflection in my driver’s side mirror. I think she jumped a foot in the air, shrugged, and kept on going.

When I got out I had to appreciate the way she had parked. She had left plenty of room on the passenger side of her car and was about as close to my car as she could get and still exit. I had to hope that I would depart before her to make sure she did not clip me when she exited.

Fantus Clinic is across the street from the hospital. I waited for a few minutes in the hospital’s waiting area before making the crossing. The radiation patients had already gone downstairs so I missed Joyce. She has 18 more radiation sessions before surgery. I still say all of the time that she is 100% cancer free and has no signs of lymphedema. She, like me, has been working full-time through her treatments. Every time we talk I feel how strong she is.

There was a man in the corner with his coat over his head. Another man snored so loudly that I heard him from a great distance. Outside a man studied the discarded cigarette butts, found one, and lit it. That has to be the grossest thing I have seen in the grossest hospital that I have ever visited. Everyone there is sick with something. The sidewalk is covered with old butts and green chemicals used to melt ice. If there had been a machine in the vicinity I would have paid for a pack of cigarettes for him. It would have been the lesser of the two evils.

That sight made me want to go outside for fresh air and a short hike the rest of the way to the clinic. When I got there I pulled a number–B021. There are A numbers for people dropping off a prescription and B numbers for people picking up a prescription.

Someone had realigned the seats in the first floor waiting area. They usually are in parallel rows with space at each end for people to come around from either side. Now the seats go to the windows. A new row of seats faces the windows and blocks the waiting area off from the hall that separates the waiting area from the glass-protected clerks’ stations. There is a TV at one end of the waiting area. There are two sign boards that tell you a number called and the Window at which that number will be served.

Where are eight windows. Window 1 is where someone collects cash. Windows 2-6 are for drop-offs. Windows 7-8 are for pick-ups. The number dispensers are between Windows 6 and 7. All windows were closed.

The windows should open at 8:00 a.m. and remain open until 7:00 p.m. They opened at about 8:15 a.m. By that time there were close to fifty people waiting. The public address service that usually announces that A01 is now served at Window 5 (and then repeats the information in Spanish) was out of order.

There were four windows open. Two for drop-offs and one for pick-ups. The people in the drop-off windows would yell from behind glass, “A01 to Window 4.” Most people got the idea. And drop-offs are quick. It got confusing when someone wanted to call B numbers because the two women at Windows 7 and 8 kept forgetting to call the B. So people who missed the A calls started going to B windows and vice versa. Sometimes the numbers and windows got posted on the signboards–sometimes not.

Fox News was warning of a storm on Tuesday. There was an elderly African American woman with a walker. Everyone seemed to know her. People would arrive and go to kiss and hug her. She told them to call their mamas or visit their baby mamas. She told a few young men to get jobs and help support their families. She held court in the third row from the TV. That was close to Windows 6 and 7. It was too loud. No one could hear their numbers.

Window 1 opened for ten minutes then closed as the employee left for a coffee break. If you were picking up a prescription, then you went to Window 6 or 7, showed a valid picture I.D., signed a smart card machine with a stylus, and got a piece of paper. You took the paper to Window 1 and waited for the missing clerk’s return.

Then you paid for your prescription. The Window 1 clerk would stamp the paper and make it a receipt. You would go back to Window 7 or 8 and wait for a lull in new pick-up calls. You exchanged your receipt for your prescription and left.

That lasted for about a half hour. Then the pick-up clerks decided that the wrong people were coming to their windows. So one came out with a notepad. She called B numbers and checked your picture I.D. She wrote down your name. Then you went back to waiting. She would then call your name and you would go to Window 7. We were down to one clerk processing the pick-ups as the other clerk was collecting numbers and names.

The prescription area is by the clinic’s front door. Everyone was arriving and leaving by passing through this area. It is noisy and crowded. As the clerk from Window 8 announced, “You see it. We’re having some problems without a sound system. That’s right. We’re having some problems. Get over it.”

If it was hard to hear your number, it was harder to hear your name. The place was like a foreign airport. No one was called Smith or Jones. Half of the waiting patients were senior citizens who were “hard of hearing.” It was like being in a subway tunnel when a train is coming. Every time a name was called, others would announce it. There was movement as people tried to exit through the new choke points created by adding a row of chairs between the waiting area and the hallway. People kept getting in the wrong lines. People were waiting for Window 1 to reopen. The line at Window 1 had to bend and run along the hall wall so that people passing through could pass.

By the time I made it to Window 1, the absence of the missing clerk had caused some to give up. They had gone back to the waiting area to sit. I waited behind a man dressed for work on a construction site. He was tapping his toes. “She’s probably on a bathroom break,” he told me.

She returned with a cup of hot coffee from the coffee stand across the street at the hospital. She did not have a key so could not get back into the office. She went to stand in the line at Window 5 to ask the clerk to let her in.

Some of the waiting people had yet to figure out what was happening. Someone started mumbling about people cutting into line. They meant the clerk for Window 1.

It took two and half hours to pick up my prescription. It took another thirty minutes to get my car and exit the parking garage because someone got into the line of people waiting to pay to exit and then said she did not want to pay and leave. So the parking attendant had to come out of her booth and direct all of the rest of us to back up so the driver could back up and continue circling in search of a parking space. No one wanted to back up and there were about seven cars waiting. Most of us wanted to punish the confused driver at the head of the line.

The parking lot attendant had the sunniest of dispositions. She said, “Thank you for waiting, Miss. Today we are handing out the finest waits you’ll find in these parts. You may just want to re-enter to get a second wait while they last.” I paid for my parking and drove out into the street. The last thing on my mind was a longing for more fine waiting.

Serving Time

The clock moves at the same speed every moment of every day, but the hours can pass so slowly when you long to be some other place. Today I met with Dr. H and heard that my blood tests showed no abnormalities. My platelets should be between 169 and about 380. They were 196. That’s fine.

On Friday I will meet Dr. Y for my first gynecological examination in a year. Nothing terrifies me more. The last time a doctor examined me I screamed in agony. I assume that a great deal more healing has taken place since surgery and twenty-five days of radiation. Nevertheless, even as I sit at my desk typing this entry, my shoulders are tense. My hands feel cold. There is that tiny quake inside my body that could become a tremor and maybe a shake if I let myself feel it. Instead, I am clenching my teeth. I am curling my fingers into my palms to keep my hands from shaking. It will probably turn out fine. Women go through this every day.

Maybe that’s why it is making me so nervous. It is supposed to be easy. Nothing has been easy for some time. I may have powered through it, but it was not easy.

According to Dr. H, if Dr. Y is satisfied, then I do not need to return for another appointment until August. I like the sound of that.

She and Dr. Z examined my “rash.” It has not gone away. In fact, it has spread. They studied the blood results, but could only speculate as to why the patches have faded, but the expanse covered has widened. Dr. H called for a dermatology consult. The Dermatology Clinic agreed to fit me in today at 12:30 p.m.

I had already been at the hospital since 6:00 a.m., but I agreed to wait around until 12:30.

That’s right. I was huddled in my car this morning in the parking garage at 6:00. The 34 degree winds were gusting up to 50 miles per hour. I was reluctant to go inside and wait in a long line for the elevators to open. I hunched down in my seat and waited until 7:00 a.m. By that time the public parking lot was filled and people were halting beside my car to ask if I was leaving because they wanted my space.

When I got to the elevator bank the line of people waiting for an elevator wound all the way to the front doors of the building and back around in a huge horseshoe shape. I stood behind a senior citizen in his wheelchair. He had his medical file resting on his knees.

Only one of the three elevators at the east side of the building was in service. The elevator would open and the police would direct people into it. Someone would press B when everyone else was headed to the second floor specialty clinics. Everyone would ride downstairs. The pack would part resentfully to let the “deviant” depart. Then folks rode back to the first floor. The waiting crowd would surge forward and then be forced to halt because there was no room in the elevator. The doors would close and the elevator would proceed to the second floor. On its return, it would head for the basement so we could repeat the exercise.

A woman in her seventies cut into the line beside me and started to pass me. She looked fit and capable of waiting. I could have objected, but I did not have the energy to squabble when we were likely to end up in the same elevator anyway. She then made a move to pass the man in the wheelchair. Big mistake. Don’t ever make the mistake of thinking that the disabled are incapable. They just have less of some abilities and more of different abilities. The man in the wheelchair saw her out of the corner of his eye and he turned the wheels of his chair just a bit faster. He avoided riding up on the heels of the couple in front of him, but he made it impossible for the woman to cut in front of him unless she hitched a ride in his lap. She lengthened her stride and drew up alongside him and did the racer’s lean. You know what I mean. Her chin came forward. Her shoulders followed. She tucked her medical file under one arm and thrust her handbag forward.

Her intention was clear. If the next elevator appeared crowded, she would edge out the man in the wheelchair and leave him to wait for the next empty car.

I may not have felt like starting a “rumble,” but the man in the wheelchair had no reservations. As we waited for the next empty elevator, he pointed at the woman and said, “This is a line, lady, and you can’t cut into it.”

“Lady” is such a polite term, but not when it is used as the man in the wheelchair used it. There was a wealth of sneering anger in that one word. I felt it like a punch in the gut. The man in the chair might have been at the county hospital for his care, but his khaki pants had a crisp pleat down the front of each leg. His plaid shirt had starch in the collar and cuffs. He may have been in a wheelchair, but his shoes had the super thick soles you see when men walk a beat or stand in formation. The file in his lap was Army green and had papers that were organized rather than assembled. He spoke with authority, but, as I said at the outset, there was something else. It was darker and a little menacing.

I looked at the woman. She was equally determined to succeed. There is an inscrutable manner that some recent immigrants project. It is partly language differences. They may or may not speak English. They may or may not understand our cultural norms. This woman looked like she was pretending not to understand. She made no eye contact. Her eyes were on the prize.

As the elevator doors started to slide open she made her move. She darted forward, cutting past the wheelchair and the couple ahead of us. As she reached the elevator’s threshold a police officer crossed in front of her.

“Are you cutting in line?” The police officer was very tall. His uniform was very blue. His eyes were very dark, like the night when the moon is a tiny sliver in the sky.

The woman betrayed no emotion. None. She evinced the steely determination that will likely see her through whatever health threat she must now overcome.

The policeman looked at me. “Did this woman cut in line?”

Now everyone looked at me. The man in the wheelchair was right. She was cutting. But, I swear, he was giving me the same scathing sneer of distaste that he had directed a moment earlier at the other woman.

I shrugged. “Officer, I’m not sure when she joined this line.”

The man beside me was fuming, but both of us waited as she forged past the policeman. There was room for the wheelchair but no room for me. As the door shut in my face, the woman smiled. It was not a pleasant smile. I know. She thought I was weak. The man in the wheelchair was pissed off. He thought I was a bitch. Maybe I was a little more of one than the other.

I am betting that he was the first one out of the elevator on the second floor. If he could have, then he probably ran over the woman’s foot. I was better off waiting for the next elevator.

When I got to Clinic H there were other bad portents. It was 7:30. That’s right. It took 30 minutes to wait for and ride an elevator down one level and up two. I took a seat because my appointment was not until 9:15 a.m., and it is bad form to try to check in more than an hour in advance. The receptionist summoned me to her desk then told me I was checking in too early. I went back to my seat and graded papers for my drafting class at the law school.

When the nurse came out to test my vital statistics she could not manage to get my blood pressure. We tried three different cuffs, put it on two different parts of my arm, and let the machine take readings at least a dozen times. We finally tried another machine. By that time my blood pressure was slightly elevated.

That was a long way of telling why I ended up with time to try to renew my charity status at the hospital. I returned to Room 1290. That’s where I went on October 26th when I was told that I could not apply for renewal of my charity status unless I owed the hospital money. At that time I had one day left of eligibility so owed the hospital nothing.

I discovered that Room 1290 is now County Care’s office. County Care is part of the Obama Care plan. It is health insurance for people who cannot afford health insurance. Of course, you also have to have an income less than $15,000. There is a tremendous tax hit as you cross over from poverty to low income. Why would a person making less than $15,000 work even one more hour if the first thing she lost was health insurance?

I work way too hard to qualify for County Care even on what universities pay to adjunct professors. The receptionist sent me to CareLink in Room 1690. I waited in line with about 20 people to get a number that entitled me to wait to see someone. When I last had an appointment with these folks I was told I would not need an appointment to renew my coverage. Everything has changed since then.

I got number 317 when the number being served was 298. I watched the clock. It was only 10:30 a.m. I had two hours before the dermatology appointment. At noon CareLink was serving number 307. I left for my dermatology appointment. I thought there was a good chance I could return before 317. No such luck.

In the Dermatology Clinic there was a full house waiting. I sat behind a man, who was sleeping in his chair, and his transgendered sister. She was at least six feet tall, had a full head of orange hair that matched her orange fake nails, wore a push-up bra and three additional pieces of lacy lingerie layered one over the other, and sported a noticeable Adam’s apple. I envied her amazingly long legs that went up to the sky in leopard print leggings. I am pretty sure that she studied the various exercises of the Brazilian Butt Lift because you had to see it to believe how high her buns of steel were. She was still working on her voice. It was tough. It was Kathleen Turner after the Super Bowl and a sip of whiskey.

There was a man with a hospital mask and a plastic “cowl” that covered him from his neck to just above his glasses. It was more than a little reminiscent of those collars they put on dogs to keep them from biting their own wounds. This man showed up every place I did today. Apparently he let the door to Clinic G shut in the woman’s face and then said to her, “Get your own door, lady.”

The woman was incensed. “Who are you calling, ‘lady’?” she asked. “Are you talking to me, dog breath? Because let me tell you that I have a bigger set than you do and mine were cut off three years ago.”

This exchange woke the brother. He sat up and watched for a minute. Then he pulled his cap down lower and let his head sink inside the collar of his pea coat.

The woman was not done yet. “In these shoes I could raise my leg and still piss on your head, you shrub.”

The man looked dazed. He scurried away. The woman sashayed back to her seat and announced to no one in particular, “If he wants to treat me like I’m a man, then I’m still twice the man he’ll ever be.”

I saw five dermatologists today. Actually, one person was a med student. She introduced herself and shook my hand. Then she took my patient history very competently. We studied my rash and she informed me that it covered my sides and back now. I had not noticed.

She brought Dr. G. Dr. G brought in two more doctors. They studied my legs where the pattern of red dots was extensive. Dots ran from my ankles to the tops of my legs. The doctors took out a magnifying glass and all took a gander at the red spots up close and under bright light. “Just like cayenne pepper,” one doctor declared. They got on the computer and looked at my blood test results. “It looks like a reaction to the bladder medicine except that such an allergy would have stopped at your legs and flanks.” Everyone studied the profusion of red dots on my arms. They were unlike any of the other swashes of red dots because they collected in patches. There was a pattern like a petaled flower at the inside bend of my left arm. On my right arm it looked more like bruising. They poked and remarked upon the lack of swelling, “heads,” and other awful signs of allergy.

They left to get “the boss.” Dr. S came in and everyone studied me yet again.

It is a teaching hospital. I became a class problem. The doctor thought it ironic that he had only seen a condition like mine in other teachers.

He speculated that I may have an allergic reaction to my bladder medication. However, he thinks it could be hypergammaglobulinemia. Discovered by Waldenstrom–who also discovered macroglobulinemia. One should be careful to NEVER confuse the two. The former is an immunoproliferative disorder. Basically, it is possible that I have too much gamma globulin because I have too little of another type of immunity (antibody) in my blood. The one type of immunity is a paraprotein that is in excessive supply–IgM. It could be that I am too low in another immunity–IgA, IgE, or IgG. I guess these other immunities are sometimes referred to as B cells, T cells, and Natural killers (NK). The doctors would need a paraprotein count, and the test is expensive so will not be done at County. However, he described it as a nuisance condition. The spots will stay or go and may return throughout my life. He suggested that I give it another month to disappear. If it lingers, then I should return to the walk-in clinic after 3 p.m. on one of the several days of the week that the clinic is open.

He did not even want to make a note to my file of the possible condition because it has not been confirmed and because the other condition that Waldenstrom identified is a blood cancer, a leukemia. It is a very serious disease, and he said that practitioners will hear Waldenstrom and the rest will sound like the teacher in a Charlie Brown cartoon, “Wah, wah, wah, wah.” They will never appreciate how much less dire my condition is.

I agreed that I could deal with the nuisance.

It was too late for me to renew my charitable status. By the time I made it back to Room 1690 it was 2:30 p.m. and the staff was working with number 327. I was 10 people too late and will have to start over on another day. Maybe I can stay after my gynecological exam on Friday to pursue the charity status.

As I drove home after 8.5 hours of waiting for about 30 minutes of time with doctors I was struck by the similarity between this potential explanation of my current spotted look and my encounters with people waiting for elevators, care, or charity. They just have less of some abilities and more of different abilities. The man in the wheelchair could not walk, but he was steely in ways that keep him from getting run over. The woman in the Dermatology clinic may not have had enough anatomy to qualify any longer as a man, but she had balls of steel when confronted by a man who thought to put her down. I am not poor. I have plenty of education. I work very hard. But I have a history of cancer and not enough income to pay for health insurance. I don’t have enough of some essential immunity, but I have so much of another that it’s splashing all over my body in its outrageous excessiveness.

Sometimes we come up short and find balance by having way too much of something else.  Today the thing I really had too much of was time, so I spent as much of it as I could learning very little of any use to me.

Rerun

I have another appointment with Dr. H on Monday. She has arranged for me to see a gynecologist (Dr. Y) on Friday as well. That means that I have two more “opportunities” coming up to face my fears that cancer will return. I want to be doing the right things so I will go to the hospital and talk with both doctors, but a part of me feels about as excited as a kid going to the dentist for a root canal.

I still have petechiae. It has faded ever so slightly on my legs. However, my shins are covered with tiny red dots. It’s like freckles on steroids. It’s like sunburn, but patchy.

I dealt with medical creditor matters this week. A collector called my mom’s house and got her all stirred up. The medical services were provided at the hospital that diagnosed my cancer and performed my hysterectomy. I called the collections firm. We have spoken before and I four times mailed to it the information about my having been granted charitable coverage at the hospital. However, when I called this week, the woman who took my call claimed to have no record of my communications. I faxed to the collections firm the charity’s letter and more copies of my previous letters and sent everything by certified mail, too. Today I received a letter and the collections firm informed me that the bill had been withdrawn from collections and my credit report would be updated. Score one for me. However, this was one more reminder that cancer lurks out there making every aspect of my life more challenging.

I have submitted several requests for prices on health insurance since the fall. So far no company has sent me a quote.

I had the closest thing to a vacation that I have had in some time this week. I was down to teaching two classes. None of them were night classes. I looked forward to this break. I had plans to get things done. I wanted to organize my home. I hoped to toss some old papers. I longed to get out and visit with some old friends. I had a novel I hoped to read. I have not read a book for pleasure in months.

I did not get any of these things done. I graded papers. I received more than a dozen requests for assistance with students’ job searches. I managed others’ crisis situations.

I took my mom to the grocery store last Saturday right after I taught a five and a half hour class. My mom has had a baker’s cyst drained and has had swollen joints that have kept her indoors for days. She was dying to get out of the house. So I took her to the store and she wandered up and down the aisles trying to find some food that would help to reduce the boredom she has experienced sitting at home nearly every day since Christmas. She walked up and down the frozen food aisle at least three times very slowly.

A fortune teller once told me I would meet my second husband in the frozen food aisle. I haven’t been there in almost twenty years. You can live quite well on food items from the other aisles. Mom and I walked the frozen food aisle again and again until she found a pail of hot beef with its own juices. I scooted back to aisle two to get a pack of rolls and then over to the pharmacy for something to help clear her ears. Each time I came back she was standing in front of a glass case studying a bag or a box or a pail of something frozen. I could not wait to get her and her groceries back in the car.

On Sunday my landlady’s radiator pan split and the water soaked through her floor and my ceiling. I became aware of it when I thought I heard rain bouncing off a window air conditioner. I got out of bed and went out to the living room to check. It was supposed to snow, not rain. As I approached the front windows I saw the brown fluid seeping out of the crown moldings and a seam in the ceiling. I had to find receptacles to catch it to keep it from running down the curtains and into my rug.

Later in the week my mom called to tell me that she thought she had lost her checkbook at the grocery store. I needed to search my car for it in case it had fallen from her purse after our trip to the store. It turned up (thanks to a prayer to St. Anthony) in her home.

I experienced some comic relief when DePaul University solicted me for a contribution to a student scholarship fund. I am taking home about $100/week for teaching an upper level legal writing class at the law school this semester. The school doesn’t offer me health insurance even though I sometimes teach several classes per semester. It does not pay for my phone, Internet connection, or parking in the Loop. The law school terminated me for having cancer. It has been conducting its own investigation of this act since the fall and has yet to report any findings to me. The solicitation implied that students were more in need than I was and the chair of the scholarship fund drive promised to match any gift I made up to $52, which is such an incentive to give, isn’t it? If the law school means to punish me for having the nerve to survive cancer and assert my legal rights, then it has not judged my character (or my legal acumen) accurately. I will not go away quietly. I will hang on and fight for the right to be treated with dignity and respect.

I met with students this week, quite a few students. I heard from several friends. There was a great deal of angst in their worlds, too. Flu, stomach ailments, migraines, parents’ illnesses, family disagreements, a friend’s marriage was in trouble, financial pressures, fear, anxiety, stress, and pain. One friend’s family survived Hurricane Sandy only to have a fire in their home. Now a “hundred years'” snowstorm heads for their damaged home.

Each afternoon I climbed into my bed when I should have been making headway with my various projects. I just ran out of steam. I would lie in the dark and shiver with a combination of cold and nerves. I would wonder how much more stress I could handle. But I got up an hour later and went back to work. There is only so much time that I can bury my head in my quilt and pray for better times. The business of surviving means getting up and getting back to work.

Tonight I went out for dinner and a movie with Barb because I wanted to do something that smacked of a leisure activity. We saw the new movie Side-Effects. Barb screamed once and laughed uncomfortably a couple of times. I won’t spoil any of the plot surprises, but it was all about pharmaceuticals that promise to make you happy and leave your life in ruins. When I got home tonight I noticed that the petechiae has spread down the insides of my arms. All I could think of is that my post-cancer life is all about the side-effects. There are side-effects of having had cancer–fear and anxiety. There are side-effects of radiation to deal with–a burned bladder, the petechiae, and concern that it is not going away. There are side-effects of having been so sick without health insurance to cover my bills–creditors, collection calls, and charity applications to make and renew. The side-effects affect my life in every one of its aspects. This month I am feeling the effects of the lower stipend I receive now that DePaul no longer uses me to teach LARC III, a class I taught every semester until after I objected to being terminated for having cancer. Despite these side-effects, I am resolved to keep going.

I do not believe that my experience is unique. I think many cancer survivors find themselves in “loops” in which they start to feel better. Then they find themselves preparing for their next medical check-up like they were headed back into danger. Positive attitudes and a great support group can help, but sometimes the strength it takes to face fear makes me so tense that my teeth chatter and every muscle in my body clenches and shivers until I have cramps in my legs, pain in my back and neck, an ache throughout my jaw, and a massive headache. But I get up and do what I have to do because I want to live and life always means handling the good and the bad.

It’s not courage that keeps me going. It’s hope. No matter how dark some of these days have been, they cannot rob me of my hope that better days are ahead.

 

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