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Many of you know me as SingleDad from my blog Disabled Daughter. For six years I blogged about my life as a single father with two severely disabled children. Pearlsky lived with me; David was in a residential school. I stopped blogging when life became difficult for reasons known by the followers of that blog. But here I am. No longer a single dad, and quickly becoming disabled myself.

I was diagnosed with stage 3 colorectal cancer on April 24, 2018. There have already been so many events that I want to blog about. Events with me, with Pearlsky, with Inanna, and more.

If you want to follow this blog, sign up on the right. The list is separate from SingleDad's. If you want to read from the beginning, start here.

And by the way, cancer sucks.

“… the only thing we have to fear is fear itself” ~FDR

Franklin Roosevelt is often grouped in as one of the top three presidents ever, along with Washington and Lincoln, he ran the country from a wheelchair, and was played by Robin Williams in two movies. Barring the issue of the St. Louis, I would agree with his greatness. Roosevelt’s first inaugural address (remember, he was elected to four terms as president) (isn’t that thought scary as hell right now?), an address of 1883 words, contained in part:

the only thing we have to fear is fear itself

and that became his 10 most famous words. The problem is fake news. Lack of context*. I argue that those words are completely out of context* so how do we know what they mean? Here is the the context, as I remember it from primary school:

The only thing we have to fear is fear itself. And this fucking tumor up my ass. And surgery. And a stoma. And surgery by a computerized robot named after a guy who has been dead for 500 years (as of next May 2).

I know I will have a stoma, a hole in my belly where the contents of my small intestine will exit my body instead of continuing through my large intestine and out my butt. This type of stoma is, quiet frankly, a bit gross. They are pinkish red since basically the lining of the intestine, the lumen, is similar to the inside of one’s mouth. It would not be so bad if it was flat along my skin, but no, it typically sticks out. Seeing that the surgery may cause erectile function issues, this may be the only thing sticking out from my body, albeit not nearly as far. I find those pictures difficult to look at but it will soon be my view and I will be dealing quite a bit with the stoma. As of today, I really don’t want to see it. How I wish I had big boobs.

It is fascinating to me that medical people say what to them is a minor thing, or a quick piece of information, without specifically discussing that topic and it can make a huge difference, both positive at times and negative at times to the patient. For instance, the surgeon mentioned that I would have an MRI before surgery. When I said “oh?” he said, as an aside, “to see if the cancer is elsewhere and if surgery is still warranted.” That simple sentence made me anxious for over two months. Seriously. (No, this paragraph was not a non-sequitur.)

The other day I was speaking with a random woman, well, not so random, as I have known her for 47 years. Anyway, I was talking with her, not that she knows much about this topic other than the fact that she has been a nurse for 40 of those years years, and a wound and ostomy care clinical specialist. She works in a big city university teaching hospital and happens to live walking distance from me. We had not had a discussion of stomas, mine nor anyone else’s. She absolutely did not know of my concerns or feelings about it. And she happened to write:

Remember that right after surgery your stoma will be swollen as will be your abdomen a little bit. Because of this, think that you could have a stoma that has a base of between one and 1/2 and one and 3/4 inches initially. Protruding is good though. That really helps keep the perfect seal since the stool bypasses your skin and goes right into the pouch.

That last sentence, the advantage of a stoma that sticks out, and the reason for it, has totally changed my attitude and feeling about it. No, I still don’t want to see it, and if it is the size of whatever I have now that sometimes sticks out I will never find a bag to fit, but simply understanding the reasons and advantages, I really feel much better about it. I did text her that …

I may wear one of those dog cone collars so I can’t see it …

Which is always a possibility I guess.


I am not really fearful of the surgery itself. I have full confidence I will wake up afterwards; I have had surgery without problems in the past. I am not fearful of what the surgeon will see or find, between the CT, MRI, and flex sig I think we have a pretty good picture of what is in there. Although I am not fearful of the recovery, I really prefer it be pain free. Somehow I think that ain’t happening.

Sometimes it is hard to understand one’s feelings. During the chemo-radiation I never really knew if I had to poop, pee, or what. All the physical feelings in my pelvis were mixed up; thankfully that has gone back to normal. Similarly, right now I don’t know what my primary stressors are. What am I afraid of? Why do I feel stressed? Is it this fucking waiting? Is it that every ache and pain I have is now thought to be a rouge tumor? Do I have a touch of diarrhea because of my being nervous or that street peddler’s sushi last night? Or am I simply being a wuss?

*Real context:

So, first of all, let me assert my firm belief that the only thing we have to fear is fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance. In every dark hour of our national life a leadership of frankness and of vigor has met with that understanding and support of the people themselves which is essential to victory. And I am convinced that you will again give that support to leadership in these critical days. ~Franklin D. Roosevelt

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“If I haven’t any talent for writing books or newspaper articles, well, then I can always write for myself.” ~Anne Frank

I know some people that do not want to know anything about what will happen to them. They go into surgery, etc. not knowing what to expect but that is how they roll. I know others who you cannot keep away from researching (is it really researching if you only use the Internet?) whatever the issue is and must know everything.

Strangely, I find myself somewhere on that spectrum. I have not, and will not, research my actual cancer. I don’t really see a point. I did read two papers at the National Institutes of Health (NIH) about the chemo-radiation protocol since I had never heard of such. I did a minor bit of research on my three doctors. That is about all. Until a few days ago.

I am in need of understanding more of what will happen the next few weeks and months. I am not looking into anything pertaining to my body per se (the actual type of cancer, etc.) but rather the procedures. The surgeon, when I asked how long the various protocols that will happen the day of surgery take (take me in -> pre-surgery set up -> surgery -> recovery, etc.) mentioned setting up the robot and kept talking. That was all I ever heard about the surgery other than it is laparoscopic. I was given some information on the stoma but not all I would have liked.

The last two posts showed you some of what my research found. Yesterday’s post with the videos and information on da Vinci took me longer than any other post here. I probably watched 20 videos looking for the most informative (first for me, then for you) and then those that I felt would not gross anyone out. But I learned. A lot. Hell, give me the controls – at this point I could probably do a decent surgical job at it myself. Well, maybe. Ok, maybe not, but you get the point.

This is the last of this three part series, mainly because things still suck and get harder every day and I want to talk about that. I am ending this short series with published papers and their abstracts. If the full text was available without a subscription I included it here. I purposely put the ones about sex at the end, my way to get you to at least read the titles! The formatting of the abstracts may be a bit funky, the links you see were in the original, I simply cut and pasted (shouldn’t it be cutted and pasted?) and didn’t want to spend the time to make it look perfect. Sorry. But you see, I have cancer …

CLICK HERE to see the papers!
 2013 Oct;60(10):B4732.

Life after stoma creation.

Surgical Department, Herlev Hospital, Herlev Ringvej 75, 2730 Herlev, Denmark. anne.k.danielsen@gmail.com.

Abstract

BACKGROUND:

Stoma creation is a surgical operation where the surgeon makes an artificial opening on the abdomen from where the bowel is taken out. It is a radical treatment with permanent physical signs of bodily change. In general, it leads to loss of a central and personal physical function, as well as an alteration in the bodily design. Research in the field may provide additional information about central elements when adapting to life with a stoma. There are currently no studies that adequately focus on the relationship between health-related quality of life and stoma construction in a Danish context, neither for temporary or permanent construction, nor in relation to the importance of stoma handling.

PURPOSE:

The overall objective of the study was to investigate health-related quality of life related to stoma creation and patient education. Methodologically, the project was implemented as a mixed methods study in which qualitative interview studies and two systematic literature reviews identified interventions, which were subsequently tested in a clinical case/control study. Finally the case/control study was made subject to an economic analysis. The project is based on 6 papers reporting the results.

ARTICLE 1: Impact of a temporary stoma on patients everyday-lives: feelings of uncertainty while waiting for closure of the stoma. The study included 7 participants who were interviewed in focus groups. The results indicated that patients experienced a high degree of uncertainty in connection with the stoma being temporary. At the same time, participants had a strong need to control both their physical appearance and their changed bodily functions. Participants opted for education programs involving teachers with a stoma.

ARTICLE 2: Learning to live with a Permanent Intestinal Ostomy: Impact on everyday life and Educational Needs. The study included 15 participants who were interviewed in groups related to whether they were treated for cancer or non-cancer. The results showed that participants often experienced the stoma as a taboo, and emotions related to stigma were identified. In addition, participants were influenced by the stoma in various ways, and the stoma imposed some restrictions on the participants. Participants pointed at group-based education, as well as the involvement of teachers who had a stoma.

ARTICLE 3: Spouses of patients with a stoma lack information and support and are restricted in their social and sexual life: a systematic review. The study included 6 articles based on quantitative and qualitative data showing that spouses were affected in several ways by the construction of the stoma. The results pointed at spouses not being informed and supported sufficiently by neither enterostoma therapists or surgeons.

ARTICLE 4: Patient education has a positive effect in patients with a stoma – a systematic review The study included 7 studies, all with quantitative results. They showed that patient education had a positive impact in several areas including shorter hospital stay, less time until proficiency in stoma management is reached, an increase in quality of life, increased knowledge about the stoma, and increased self-efficacy.

ARTICLE 5: Health-related quality of life increases when patients with a stoma attend patient education – a case/control study. The study included 50 participants shortly after stoma creation. The results showed that the disease-specific quality of life was significantly increased in the intervention group, while generic health-related quality of life was positively affected in different dimensions in both groups.

ARTICLE 6: Decreased costs with patient education after stoma creation. The study was an economic analysis based on participants in Article 5. The results indicated that there were fewer unplanned re-admissions related to the stoma, and that patients in the intervention group did not visit the general practitioner as much as patients in the control group. Furthermore, we found that the average cost per patient did not increase when establishing a patient education program.

CONCLUSION:

The thesis concludes that patient education has a positive impact on patients’ quality of life, and that costs are reduced. At the same time, it is concluded that living with a stoma is a complex situation, which also involves spouses and close relatives, and that patient education must be based on multiple interventions that are not all explored in this project.

PMID: 24083536
[Indexed for MEDLINE]

Full paper not available (to me).


. 2017; 25: e2961.

Published online 2017 Dec 11. doi:  10.1590/1518-8345.2059.2961
PMCID: PMC5738856
PMID: 29236839

Ostomy patients’ perception of the health care received

ABSTRACT

Aim:

to describe ostomy patient’s perception about health care received, as well as their needs and suggestions for healthcare system improvement.

Method:

qualitative phenomenological study was conducted, involving individual and semi-structured interviews on the life experiences of 21 adults who had a digestive stoma. Participants were selected following a purposive sampling approach. The analysis was based on the constant comparison of the data, the progressive incorporation of subjects and triangulation among researchers and stoma therapy nurses. The software Atlas.ti was used.

Results:

perception of health care received is closely related to the information process, as well as training for caring the stoma from peristomal skin to diet. It is worthy to point out the work performed by stoma care nurses ensuring support during all stages of the process.

Conclusion:

findings contribute to address the main patients’ needs (better prepared nurses, shorter waiting lists, information about sexual relation, inclusion of family members all along the process) and recommendations for improving health care to facilitate their adaptation to a new status of having a digestive stoma.

Descriptors: Colostomy, Ileostomy, Qualitative Research, Health Services, Patient Satisfaction, Health Personnel

Click here to read the entire paper Ostomy-patients-perception

 2016 Dec 8;24:e2840. doi: 10.1590/1518-8345.1276.2840.

Experiences and coping with the altered body image in digestive stoma patients.

[Article in English, Portuguese, Spanish; Abstract available in Portuguese and Spanish from the publisher]

Abstract

OBJECTIVE:

to describe the coping of stoma patients with the news about the ostomy, as well as to analyze the meaning and the experience of their new bodily reality.

METHOD:

qualitative phenomenological study undertaken through semistructured interviews with 21 stoma patients. The analysis was based on the constant comparison of the data, the progressive incorporation of subjects and triangulation among researchers and stomal therapy nurses. The software Atlas.ti was used.

RESULTS:

two main categories emerge: “Coping with the news about receiving a stoma” and “Meaning and experience of the new bodily reality”. The informants’ answer varies, showing situations that range from the natural acceptance of the process to resignation and rejection. The previous experiences of other family members, the possible reconstruction of the stoma or the type of illness act as conditioning factors.

CONCLUSIONS:

the coping with the news about the stoma is conditioned by the type of illness, although the normalization of the process is the trend observed in most informants. Nursing plays a fundamental role in the implementation of cognitive-behavioral interventions and other resources to promote the patients’ autonomy in everything related to care for the stoma.

PMID:  27982309
PMCID: PMC5171781
DOI: 10.1590/1518-8345.1276.2840

Click here to read the entire paper body-image-stoma

 2017 Jan/Feb;44(1):63-68. doi: 10.1097/WON.0000000000000271.

Perceived Barriers and Home Care Needs When Adapting to a Fecal Ostomy: A Phenomenological Study.

Burcu Cengiz, MSc, RA, Department of Public Health Nursing, Dokuz Eylul University Faculty of Nursing, Izmir, Turkey. Zuhal Bahar, PhD, Department of Public Health Nursing, Koc University School of Nursing, Istanbul, Turkey.

Abstract

PURPOSE:

The aim of this study was to determine perceived barriers to adaptation to life with a fecal ostomy based on the Health Belief Model and to reveal home care needs related to these perceptions.

DESIGN:

Phenomenological study.

SUBJECTS AND SETTING:

Twelve participants undergoing ileostomy or colostomy within 3 months of data collection participated in the study. The participants were recruited from Stomatherapy Outpatient Clinic of Dokuz Eylül University Hospital. Their mean age was 54.41 ± 19.14 years (mean ± SD). Eight (67%) underwent ostomy surgery 2 to 3 months prior to study participation; 9 (75%) underwent stoma surgery for the treatment of colorectal cancer, 5 (42%) had a temporary stoma, and 8 also received chemotherapy for the management of an underlying malignancy.

METHODS:

A semistructured interview form was used to collect data, and obtained data were analyzed with inductive content analysis. The questions were based on the Health Belief Model and were directed at identifying challenges to adaptation to life at home and home care needs in patients with stoma.

RESULTS:

Inductive content analysis identified 4 main themes: “restriction of daily life activities”; “factors affecting adaptation to stoma”; “need for health professionals”; and “emotional effects.” The theme, need for health professionals, was expressed by the highest number of the participants. The respondents explained that services from ostomy nurse specialists should begin in the hospital and continue into the home. Participants suggested that ostomy nurses are needed to improve self-care skills via telephone contact and home visits. They also expressed the need for nursing interventions for the management of adverse effects associated with chemotherapy.

CONCLUSIONS:

Individuals experience physical, mental, and social barriers when adapting to live with a new stoma and when receiving chemotherapy for underlying cancer. Additional services from ostomy nurses are needed to aid patients when adapting to these challenges.

PMID: 27564927
DOI: 10.1097/WON.0000000000000271

Full paper not available (to me).


 2013 May;22(9-10):1343-52. doi: 10.1111/jocn.12011. Epub 2013 Jan 2.

Impact of a temporary stoma on patients’ everyday lives: feelings of uncertainty while waiting for closure of the stoma.

Department of Surgery, Herlev Hospital, University of Copenhagen, Herlev, Denmark. anne.kjaergaard.danielsen@regionh.dk

Abstract

AIMS AND OBJECTIVES:

To examine patients’ experiences of impact of a temporary stoma on their everyday life. Furthermore, we wanted to generate new knowledge and comprehension of learning how to live with a temporary stoma.

BACKGROUND:

There are many aspects, largely unexplored, that may influence patients’ adaptation to life with a stoma. Amongst these, being in a temporary state is relatively unexplored and may have a restrictive impact on patients’ adaptation.

DESIGN:

Focus group interviews conducted with seven patients with temporary stoma were set up with a hermeneutic phenomenological perspective.

METHODS:

Data were processed using qualitative content analysis.

RESULTS:

The creation of a temporary stoma led to feelings of uncertainty related to being in an undecided situation. Stoma creation led to feelings of stigma and worries about disclosure. Patients proposed group-based patient education with lay educators with a stoma to make sure that information about the stoma was based on real-life experiences.

CONCLUSIONS:

Creation of a temporary stoma was linked to uncontrollable feelings of uncertainty. Professionals should assist patients with focus on coping strategies, as they are associated with positive re-evaluation of the situation. Introducing a coherent and structured learning environment involving both lay educators with a stoma and group-based learning would be useful.

RELEVANCE TO CLINICAL PRACTICE:

Nurses and other health professionals should support patients in problem-focused coping strategies. These strategies may be supported when patients have a high sense of coherence. Furthermore, patients’ disclosure of the stoma as a way to master feelings of stigma should be facilitated. Stoma education is central for patients, and group-based learning that involves lay educators with a stoma is seen as a way to empower patients with temporary stomas.

PMID: 23279240
DOI: 10.1111/jocn.12011

Full paper not available (to me).


 2013 Dec;28(12):1603-12. doi: 10.1007/s00384-013-1749-y. Epub 2013 Jul 31.

Spouses of patients with a stoma lack information and support and are restricted in their social and sexual life: a systematic review.

Department of Surgery, Herlev Hospital, University of Copenhagen, Herlev Ringvej 75, 2730, Herlev, Denmark, anne.k.danielsen@gmail.com.

Abstract

PURPOSE:

A permanent stoma has a large impact on everyday life with several physical, mental, and social impairments for the individual. It seems obvious that if persons with stomas are affected socially by the stoma creation, it is likely that the family and/or relatives will be affected as well. The objective of this systematic review was to explore how stoma creation may affect spouses of patients with stomas.

METHODS:

A systematic review was undertaken based on database searches including studies published from 1950 to 2012. We applied a method of synthesis based on narrative summaries of both qualitative and quantitative results being assessed in parallel processes and finally included in a joint synthesis of results on a study level.

RESULTS:

We identified 17 studies and included 6 studies. Spouses wanted to be more involved in the stoma education and specifically wanted more focus on the psychosocial aspects of stoma creation. Furthermore, spouses’ sexual life was seriously affected, and their social life was restricted. In general, spouses wished for more support from the health care sector as well as from family and friends.

CONCLUSIONS:

There is a need for further research focusing on spouses or relatives. Talking about worries and concerns regarding the new life situation may alleviate suffering and reduce uncertainty. Stoma nurses and other health professionals play an important role in the care of patients as well as spouses, and a greater insight into the worries and concerns affecting spouses is warranted to improve postoperative counseling and education.

PMID: 23900653
DOI: 10.1007/s00384-013-1749-y
[Indexed for MEDLINE]

Full paper not available (to me).


Sexual (dys)function and the quality of sexual life in patients with colorectal cancer: a systematic review

M. J. Traa J. De VriesJ. A. Roukema B. L. Den Oudsten
Annals of Oncology, Volume 23, Issue 1, 1 January 2012, Pages 19–27, https://doi.org/10.1093/annonc/mdr133

Published:  20 April 2011

Abstract

Background:

To determine (i) the prevalence of sexual (dys)function in patients with colorectal cancer and (ii) treatment-related and sociodemographic aspects in relation to sexual (dys)function and the quality of sexual life. Recommendations for future studies are provided.

Methods:

A systematic search was conducted during the period 1990 to July 2010 that used the databases PubMed, PsychINFO, The Cochrane Library, EMBASE, and OVID Medline.

Results:

Eighty-two studies were included. The mean quality score was 7.2. The percentage of preoperatively potent men that experienced sexual dysfunction postoperatively varied from 5% to 88%. Approximately half of the women reported sexual dysfunction. Preoperative radiotherapy, a stoma, complications during or after surgery, and a higher age predicted more sexual dysfunction with a strong level of evidence. Type of surgery and a lower tumor location predicted more sexual dysfunction with a moderate level of evidence. Insufficient evidence existed for predictors of the quality of sexual life. Current studies mainly focus on biological aspects of sexual (dys)function. Furthermore, existing studies suffer from methodological shortcomings such as a cross-sectional design, a small sample size, and the use of nonstandardized measurements.

Conclusion:

Sexuality should be investigated prospectively from a biopsychosocial model, hereby including the quality of sexual life.

Click here to read the entire paper sexual-dys-function
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“Just as courage imperils life, fear protects it.” ~Leonardo da Vinci

First, a follow-up to the previous post. I found a great video that shows, via animation, all about the ileostomy. There are no disturbing true-life images! It was written for patients with irritable bowel disease (IBD) since they also often need an ileostomy but all the information is the same.

Now the question is, how the hell are they going to get the cancer out of me? As far as I am concerned, since the doctor can feel the tumor with his finger in my butt, why don’t they just take it out that way? I don’t know, but truthfully, I don’t want to know.

In the past, a surgeon would cut open my abdomen, through skin, muscle, and yuck; retractors would hold the foot long incision open, and they would dig around, take out part of my colon, etc. That has now gone the way of leeches I guess (although leeches still have a place in medicine) and the surgery is done laparoscopically.

This shows the difference in surgical openings:

Click here to see an actual photographic comparison

“Open and laparoscopic abdominal incisions after urgent total abdominal colectomy for CUC. Left panel: laparotomy with staples; right panel: laparoscopic subtotal colectomy with one 12-cm port site hidden in the diverting stoma, three 5-mm suprapubic, and 1 left lower quadrant ports are imperceptible. Left panel courtesy of Holubar; Right panel courtesy of Dozois, May Clinic, Rochester.”  From here.

Laparoscopic surgery, also called minimally invasive surgery (MIS), bandaid surgery, or keyhole surgery, is a modern surgical technique in which operations are performed through small incisions (usually 0.5–1.5 cm) elsewhere in the body.

There are a number of advantages to the patient with laparoscopic surgery versus the more common, open procedure. Pain and hemorrhaging are reduced due to smaller incisions and recovery times are shorter. The key element in laparoscopic surgery is the use of a laparoscope, a long fiber optic cable system which allows viewing of the affected area by snaking the cable from a more distant, but more easily accessible location.

Specific surgical instruments used in a laparoscopic surgery include: forceps, scissors, probes, dissectors, hooks, retractors and more.

From Wikipedia 

And yes, my uterus is much smaller than the one in that illustration.

So they cut a slit, put in a tube, and blow some carbon dioxide in. Yes, so many snide remarks being filtered right now.

Then a few more slits, one has a camera, one a stapler or retractor or something, another a type of knife, etc. Several people would be controlling the instruments, there would be a monitor or two showing the inside view, and the surgeon running the show. At the end of surgery they will attempt to suck out all the gas, any left over may cause shoulder discomfort for a couple of days after surgery. (Yep, it ‘tickles’ the bottom of the diaphragm and you have referred pain. The body is so fucked up.)

Click for a photo of a patient with said instruments

And then came da Vinci. This is the name of a surgical robot that aids in the surgery. da Vinci cannot and does not do surgery on its own, it is not that kind of robot. What it does do is control the instruments under the direction of the surgeon. The surgeon has complete control at all times. The robot filters out any hand tremors, magnifies the motions as desired, etc.

This is a great video explaining it all. There is about 1 second of insides near the beginning that does not really look like anything and should not typically be objectionable!

Click for an even better demo of the machine, but a good amount of internal body views!

And, if you really are a sicko, here is the entire surgery I am having from the point of view of the camera that will be in my belly …

Click here at your own risk

da Vinci Robot Assisted Low Anterior Resection with Diverting Loop Ileostomy

And if you are wondering how they get a foot of colon, with tumor, out of me?

Click here for a screenshot of how …


And now I must admit, I pine for the good old days, the days of my childhood, those days when surgery was done by the neighborhood barber, the days of yore.

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Better a semicolon than a full stop

Two weeks until surgery and yes, I am getting nervous. I am preparing by preparing and learning. In this post there will be some pictures that are hidden and you can choose to look at them. No, not pictures of me. At least not yet. They will be behind a click me thing that just makes them appear, it does not take you to a new page. Here is a test to show you a secret message:

Click here for the secret message

I have colon cancer. Cancer sucks.

I will also do that with more technical information. People have asked all sorts of questions about the protocol and surgery and I will answer some today, in this post.

The goal of the chemoradiation was primarily to shrink the tumor and kill cancer cells that were in the surrounding tissue. It has been found that for certain tumors doing chemotherapy along with radiation makes both of them more effective. I had this for six weeks.

To read a bit more technical information on it, click here

Chemoradiation therapy in the management of gastrointestinal malignancies.
McRee AJ1, Cowherd S, Wang AZ, Goldberg RM.
Abstract
Concurrent administration of chemotherapy and radiotherapy has been increasingly used in cancer treatment, leading to improvements in survival as well as quality of life. Currently, it is a feasible preference, often regarded as the standard therapeutic option, for many locally confined solid tumors, including anal, bladder, cervical, esophageal, gastric, head and neck, lung, pancreatic and rectal cancers. In patients with these tumors, combined modality therapy improves local tumor control and survival while, in some instances, obviating the need for surgical removal of the organ of origin. The scientific rationale for the use of chemoradiation derives from the preclinical and clinical observations of synergistic interactions between radiotherapy and chemotherapy. When chemotherapy and radiotherapy are administered together, the chemotherapeutic agents can sensitize the cancer cells to the effects of ionizing radiation, leading to increased tumor-killing effects within the radiotherapy field. This, in turn, can improve local control of the primary tumor and, in some cancers, render surgical resection unnecessary. In other cases, patients with tumors that were initially considered unresectable are able to undergo curative interventions after completing chemoradiation. The chemotherapy component can address any potential micrometastatic disease that, without therapy, leads to an increased risk of distant recurrence. A large body of evidence exists that supports the use of chemoradiotherapy in gastrointestinal cancers. In fact, one of the first tumor types in which the superior efficacy of chemoradiation was described was anal cancer. Since then, chemoradiotherapy has been explored in other gastrointestinal malignancies with superior outcomes when compared with either radiation or chemotherapy alone. This article aims to recapitulate the clinical evidence supporting the use of chemoradiotherapy in a variety of gastrointestinal tumor types.
From here.

Then there is the question as to why I am waiting for surgery? In the beginning (sounds so biblical) they tried surgery after chemoradiation but found that it was not working too well. Recently radiated tissue is very difficult to work with and the surgeons found that some tissue was just falling apart, suturing was difficult, etc. So they waited two weeks. That did not work out so well and they tried waiting four weeks. By the time they waited 12 weeks they determined that was too long. The wait is typically 8-10 weeks. During this time the chemo and radiation still have effects on the tumor and the body.

I have had side effects start several weeks after the chemoradiation ended. Dry skin primarily on my palms started about 2 or 3 weeks after therapy ended and my pubic hair actually started to thin about 4 weeks after. At this point I believe all side effects are done.

Let’s do a thirty second review from high school biology … here is something most of us have in common:

And of course the rectum exits at one’s butt.

I found a great resource with information about my upcoming surgery from the University of Tennessee Medical Center. I will be sharing parts of it in this post.

This picture is really freaky in that the black dot is in the original picture in that document. Why is that freaky? It is exactly where my cancer is … hmmmm … copyright infringement?

The dashed line shows what will be removed.  There is enough of the rectum remaining to still be usable! The stringy things you see that will be removed are lymph nodes and blood vessels. Once this is removed, the new end of the descending colon will be attached to the remaining part of the rectum (since there is room for the surgeon’s stapler).

Click here for a better, more realistic picture

I added the black dot and the grey oval; that oval encloses what needs to be removed.

Once the bad shit is removed and the remaining colon is connected to the remaining rectum the question becomes, how does the connection heal? It cannot be all that helpful for me to be sending my poop, feces, shit, etc. past the new connection all the time. So that area is bypassed.

The bypass happens in the small intestine. Before the contents of the small intestine can reach the large intestine (colon) they are diverted out of the body. The large intestine does many things (and I am sure not all are known) but one primary function is to absorb water and salts. When the small intestine is diverted out of the body, what comes out is much more watery and unformed that what we are used to leaving our body. This can cause dehydration since the colon is not absorbing this water before it is lost.

This diversion, for me, will be temporary. The small intestine is diverted out the wall of my abdomen and that creates a stoma. This happens in the part of the small intestine known as the ileum, hence I will have an ileostomy.

This is how it is done for a loop ileostomy:

Click here for more information on stomas (and pictures)

Two drawings of the surgery:

When you look at the actual stoma it is bright red/pink and moist because you are actually looking at the inside lining of the small intestine. And, yes, that is called the lumen!

Click for a picture of an actual stoma

And no, he did not pull a quarter out of his stoma … that is to show the size!

Depending on how my innerds are healing, I will have the stoma removed (all put back together) after about five weeks or five months. They don’t do that surgery during chemo which will start about five weeks after surgery.

And all of this will be complete, B”H, two weeks from right now.

Next post will talk about much more fun stuff, robotic surgery!

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“I love a natural look in pictures.” ~Marilyn Monroe

Several weeks ago, during the wonderful chemo-radiation, I asked one of the doctors (not the surgeon) for some more information about the surgery itself. He said that he was an awful artist but took pen to paper anyway …

If you know what to look for, this is actually a very good representation drawing. The tumor is at the intersection of the colon and the rectum (double circle near the bottom), the two “cut lines” for the surgeon show the foot long piece of colon to be removed, and the other drawing shows how the small intestine will be “tapped” into for the ileostomy. (I have been saying colostomy but in fact I will have an ileostomy … “a surgical operation in which a piece of the ileum is diverted to an artificial opening in the abdominal wall.” The name tells one the part of the overall intestine getting stomatized.)

Here is the picture I was given at the pre-op testing appointment yesterday. I like the doctor’s drawing better.

And of course I got my Home Ostomy Kit Book …

Yes, yes, I know, you want the to see my perfect belly. This is all about the “X” and its placement. As discussed in yesterday’s blog post, the nurse is tasked with finding the best placement for the stoma with both my quality of life and the mechanical workings of the stoma / bag system in mind. Once the placement was determined, she marked the “X” with a pen and covered it with a clear dressing.

So the next subject is the bag itself. These bags are clear and that is kind of rude as even I don’t particularly want to see the contents of my small intestine. There are lots of covers on the market, and searching led me to a small assortment that I find interesting …

And of course then there is my favorite:

All sorts of people do all sorts of things with said accessory:

What I don’t understand is why they don’t make manly covers … here is a mock up I just created, I bet I can sell a million …
What better cover to use when sitting around just shooting the shit with friends?

The takeaway is that I think no matter what, after surgery I very well may end up looking like either Bag Lady Mama:

or the lady in red …


I may be bummed that it is only temporary …

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“I must govern the clock, not be governed by it.” ~Golda Meir

I had two appointments today, the wound/ostomy nurse and the pre-admission testing.

I decided that I was not going to ask questions if I knew I could get the answer elsewhere. I was just going to smile no matter what. I am so beat down by this place, it is a survival strategy.

The wound/ostomy nurse appointment was for 10. I arrived at 9:45 in case I had to squeeze in an enema … you never know. I checked in, sat down and waited. At 10:15 I was craving coffee so I figured I would see how much of a delay there was. I walked up to the desk and simply said:

Do you know what time I may be called in?

The woman responded:

She may be running late.

May? She may be running late?

According to that clock on the wall it is determined that in fact she is running late, that’s not the issue. Do you know when I may be called in?

She made a phone call and no, I did not have time to get coffee.

A very nice woman comes to get me, she is the nurse and apologizes for the delay. I smile and say “no problem.” I take her card and after her name it says “RN, BSN, CWOCN, Certified Wound, Ostomy and Continence Nurse” and I am a bit impressed even though I have no idea what some of that means.

She started by telling me that she will talk to me as she talks to everyone. Yeah, I got that message loud and clear. That’s fine, I will smile and listen. She then taught me that the small intestine is sometimes called the small bowel, and she wrote this down for me. Then she wrote down that the large intestine is the same as the large bowel and that is also called the colon. She literally wrote this down for me.

She had a great picture of what the surgery will do, but that is the only thing she showed me that was not part of my packet to go home. I really don’t understand why they would leave that out, but I did ask (yes, breaking my own rule) if I could have a photocopy of the paper she put away in her drawer. She did make a copy.

During her talk she used vocabulary all over the map. She taught me the words intestine and bowel yet used the word lumen three times and even in context I have no fucking idea what lumen means. I thought I knew what edema is, but in its context I am not sure. No, I did not ask, she knew her presentation, and since she is using low-level vocabulary (what ‘I will talk to you as I talk to everyone’ is code for) I am not going to show my stupidity. I am sure every patient in the clinic is familiar with their lumen. The whole thing started to make me bilious. And yes, that is another word she used and no, I had no fucking idea what bilious meant. Every time she said a word I did not know, I wrote it down.

Why they just don’t make a 15 minute video that explains all this that they can very carefully vet so it is understandable is beyond me. They can show it with the nurse sitting right there and all this goes away. But I digress … a bad habit of mine.

She had a show and tell with bags and stuff, I will share that in my next post.

She then checked out my belly … mentioning that it was very nice (medically) and noticing that I am somewhat hairy so I should use my electric razor in the area of the ostomy. Ok, no problem. She looked at me sitting, lying down on my back and right side, saw how high (or low) I wear my pants and now “X” marks the spot. Pictures of my very nice belly and “X” coming soon.

I left her at 11:10 and I had a 5-minute appointment with pre-admission testing at noon. Remember, this is the one I was told would be done over the phone, but nooooo …

I went to the cafeteria on my way, had a portobello stew thing over whole wheat colored pasta for $4.95. Actually it was pretty good. Then onto pre-admission testing.

The appointment lasted 7-minutes. It consisted of 6-minutes of questions that could have been asked over the phone and the nurse looking in my throat. I will need to be intubated during surgery (breathing tube in my throat) and she needed to see if I have an appropriate throat, sans edema of the lumen.

Then I went home, curled in a fetal position, and cried.

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