If the wheels on the bus go up and down; it might mean you just ran someone over

If I had posted yesterday my post would have been less than positive.  I am glad I didn’t post yesterday.  Today I received a very classy apology to a rather unfortunate incident.  I believe in sharing my experiences with blog readers in the belief that if one person can benefit from those experiences then it was worth sharing.

Lessons from today’s post.  

1.  Stand up for yourself.  Be your own advocate.

2.  We willing to share good as well as bad (don’t make it all or nothing)

3.  Keep mind open to 2nd chances; be willing to give that 2nd chance

Here is the “rest of the story”…

I sent this email (btw…great suggestion to do so) following a doctor visit.

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Dr. x (aka NewDoc),

I saw you this morning regarding my stoma. Since the exam I have been struggling trying to connect the NewDoc I met last week and the NewDoc I met today.

I was so impressed by you last week that I blogged in praise of you
http://lifeaftergastrectomy.com/2012/02/21/medical-updates/ ) I wrote…“he returned with another doc. I would say that it was a breath of fresh air walking into the room. New doc came over and expressed empathy and concern (before even looking at stoma). He asked me how I was holding up… He put his hand on my shoulder and assured me that he would help. Plastic surgeon told him that he had promised not to do silver nitrate at this exam. New doc maintained eye contact with me and assured me as well that he would not do silver nitrate either. He then examined the stoma…New doc said tube was still too small for size of tube channel and that this looseness was irritating channel and allowing bile to enter channel…New doc then suggests a new tube that will fit better and he can do it while I am there. Wow!

…New doc said that he would be taking over my care and that he wanted to see me in one week. He told nurse to let scheduling know to find room in his schedule to see me.”

I went on to blog…

“I am very pleased with the new doc’s manner. Just the perfect blend of compassion and professionalism. Since he is one of the senior docs, he also has a lot of experience. I am not dreading Thursday’s appointment quite as much now that he will be in charge. Amazing how a little warmth and compassion makes the medicine go down easier.”

Imagine my reaction when this morning the first thing you said to me when you entered the exam room was “Have we met before?” I was almost speechless. I told you that we met last Thursday when you were consulted by PlasticSurgeon….you still didn’t make the connection so I reminded you that you inserted a new j-tube and that I have been experiencing a lot of stoma granulation issues. You seemed to make the connection with your “Oh…okay, so how is it doing?” I wondered if you had even read my chart prior to the exam.

I told you that, although the fluids seemed to be slightly reduced, the pain had not diminished and the pain was still of serious concern. You looked at the stoma and then announced that you will be applying a silver nitrate treatment. I was convinced at that moment that you had indeed not read my chart and knew nothing of my case. While applying the silver nitrate (very painful) you acknowledged pain and paused for me to catch my breath before continuing. Afterwards you briefly discussed options related to the tube attachment. I explained that the current securement has resulted from trial and error with other options….including the disk option (blogged about that months ago). I mentioned that one of your suggestions (a button) had been considered and dismissed due to internal placement of my tube (I even blogged about that *sigh*). You dismissed this concern as well as the one voiced about being unable to wear the support/pressure brace if tube is placed how you suggest. Cut a hole in the brace you suggested – as well as in clothing (!?). I asked about the excess skin issue and you replied that you would be making a couple calls about buttons and attachment devices.

You told me to come back on Monday for another silver nitrate treatment. If you had read my chart you might have realized that I have had almost weekly silver nitrate treatments for several months with no improvement and increasing discomfort. You would have realized that PlasticSurgeon had been very aggressive with silver nitrate and it irritated the site rather than improve it (which is why you were consulted in the first place just last week).

Last week you had many other options besides silver nitrate/tube attachment. You talked about exploring long-term treatment options. I left encouraged and impressed. Today, it was back to the same song and dance routine (silver nitrate/tube attachment devices). I left totally discouraged and dismayed.

What happened in 7 days? Which NewDoc will I see on Monday?

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I received the following email today….very impressed with NewDoc (again) and I am open to continuing to remain his patient.  I look forward to “starting over” with him next week.

Dear Ms. Howard,

Please accept my humble apology for the anguish I have caused you. I spoke to our nutrition service after you left to explore a button device to replace the Foley catheter that you have been using. She will be in clinic on Monday so we can both evaluate the jejunostomy site. I recognize that this has been a difficult problem for you. I truly do want to try work with you and try to remedy the situation for you. However, I can understand you not wanting to see me after my rude behavior during Thursday’s encounter. I am sincerely sorry for upsetting you on Thursday.

NewDoc

It is an odd feeling this sense of self-advocacy.

Medical Updates

So…last Wednesday I saw my primary care doc.  He looked at stoma site (tube insertion point into abdomen) and excused himself to go call plastic surgeon while I waited.  Came back in and said that plastic surgeon wants to see me next day.  He also commented that the plastic surgeon told him that he had practically tortured me with last treatment.  Glad to know it wasn’t my imagination.

Thursday – early morning iron infusion then B12 shot and then off to see the plastic surgeon – I really dislike days where all my freedom time is spent with medical appointments.

When the plastic surgeon came into exam room, I asked if I could ask a couple of questions before he “got started”.  He quipped back “That was one.”  “Fine” I replied “I would like to ask 3 questions.”  I am sure he was trying to build rapport with me but it seemed a little snarky to me.  I point blank asked him about the issue of the loose skin around the stoma site as one of the contributing factors to continuing irritation.  I asked if the risk of infection was too high to consider the long-term reduction of continued irritation if surgery is performed.  He said the risk was not too high and that he could reduce some of the skin/irritation.

I then told him that, while I appreciate his desire to address the tissue granulation with an aggressive treatment plan, I would appreciate it if he would not forget that I am attached to the stoma site.   I couldn’t help the quaver in my voice and the tears that from no where.  He asked if it had helped at all and I honestly told him that the pain had increased rather than decreasing.  I told him that the pain was severely limiting my already limited activities and that I would rather go with a less aggressive but more frequent treatment with primary care doc if this was the continued recommended treatment.  My comments seemed to startle the doc (and the interns in the room) and he assured me that he was aware that I was connected to the stoma but that he would keep this in mind.  He even said that he would not be doing silver nitrate at this visit due to the high level of pain that was still present.

He then looked at the stoma site and made the comment that it appears that the aggressive treatment was just pissing off my tissue rather than improving matters.  He then said he was going to see if a particular colleague was available to come take a look at the stoma and offer some suggestions.  He told one of the interns to stay with me.  Had a nice chat with the young man.  Joked with him that he would have to lose a lot of his personality to become a surgeon.  He agreed that the average surgeon does seem a bit “reserved”.   He also said that the doc being consulted was unlike any other surgeon and I would be rethinking the “surgeon personality” after meeting him.

About 10 minutes later he returned with another doc.  I would say that it was a breath of fresh air walking into the room.  New doc came over and expressed empathy and concern (before even looking at stoma).  He asked me how I was holding up (damn, couldn’t stop more tears from leaking out.  Why does anyone asking me how I am holding up, it makes me cry?).  He put his hand on my shoulder and assured me that he would help.  Plastic surgeon told him that he had promised not to do silver nitrate at this exam.  New doc maintained eye contact with me and assured me as well that he would not do silver nitrate either.  He then examined the stoma.

New doc asked who put in tube and wanted to know if it was original tube.  I explained that tube had been replaced a few months ago and the ER doc put in a larger size.  New doc wanted to know if original surgeon was involved in treatment and when I said that original surgeon states that he only puts the tubes in, he doesn’t maintain them; plastic surgeon made a slightly snarky comment and was given a reprimanding eye glare from new doc.  I got the distinct impression that there is an ongoing animosity between plastic surgeon and original surgeon.

New doc said tube was still too small for size of tube channel and that this looseness was irritating channel and allowing bile to enter channel (the ooze that I had been told was normal by original surgeon).  The fluids were further irritating channel tissue.  New doc then suggests a new tube that will fit better and he can do it while I am there.  Wow!

If you have never had a j-tube removed, it is one of the weirdest sensations ever.  It is like that stomach flop that happens on an elevator times 100.  New doc did say that the pain would be about the same for inserting as it would for injecting the pain medication.  Remembering the previous painful injections, I told him I was willing to tolerate the insertion pain.   Whoa…because of irritated tissue, inserting the snugger tube was more than just a little painful.  Not sure if I made the right choice.  New doc said that he would be taking over my care and that he wanted to see me in one week.  He told nurse to let scheduling know to find room in his schedule to see me.

My new j-tube is RED.  It has taken a little getting used to the color….first time I went to hook up I had a little “gleep” moment thinking I was bleeding.  I have noticed a slight reduction in the amount of fluid at stoma.  It is still very present and still looks like infected pus (I know gross…trust me even more gross in person) but quantity of fluid reduced.  There has also been a slight reduction in the overall stoma site pain.  The pain is almost always present (except when I am reclined and not moving a muscle…not even to blink) but it has dropped from a base of 8 to a base of 7 with some moments dropping to 6.  Today it is back up to an 8 (I think due to my activity while running a couple of  errands this morning – that and the fact that I kept dropping keys and such  and had to get in/out of car several times).   I am taking it really easy rest of the day hoping it will drop back down tomorrow.

I am very pleased with the new doc’s manner.  Just the perfect blend of compassion and professionalism.  Since he is one of the senior docs, he also has a lot of experience.  I am not dreading Thursday’s appointment quite as much now that he will be in charge.  Amazing how a little warmth and compassion makes the medicine go down easier.   While I am still convinced that there is a “surgeon personality”, I am willing to concede that there are some surgeons who have escaped the damaging effects.

[oh,  for those wondering….yes, I did check and, unfortunately, new doc (who is in ideal age range) was sporting a wedding ring.  I think I would much rather keep him as treating doc…be still my throbbing stoma (hahahaha)

Random babbling…

I read on another website about people thinking cancer is contagious and how some people have noticed the distancing of friends/co-workers.  I thought about some of the people I have lost since cancer.  I think many people pull away because they feel helpless or they are afraid/worried that they will be asked to provide more emotional support then they are willing to give.

I lost several friends due to my cancer.

Friend 1.  She works at a hospital and said my cancer was liking bringing her work home with her.  It was too “medical” and when she was off work she didn’t want anything to do with medical issues.

Friend 2.  Her closest friend died of cancer a few years back and my cancer reminded her of that loss and she didn’t want to get hurt again so she decided it was better to sever the friendship.

Friend 3.  Our friendship consisted of lunches, dinners, movies….now that I can’t do those she struggles to adjust to new options.  She works during the day in the city and so it leaves evenings and weekends only.  She is usually busy with family on weekends so that left evenings.  Due to pumps, evenings are out for me.  Too much of a bother and too inconvenient for her.

I do understand what their reasons are and although it hurts to feel “dumped” due to cancer, I try to focus on the good memories rather than the reason the friendship ended.  I know that most people would view them as petty “not-really-friends” but that wouldn’t be a fair statement.  We all have our limits and know what nurtures us with our friendships.  Cancer treatment and the aftermath has limited my ability to nurture their needs and to meet them on equal grounds.

I respect their ability to come to terms with THEIR emotional limits and were honest with me.

I haven’t filled the friend voids – it is very difficult to get out and meet new people.  I also hate to explain why I can’t meet them for dinner/lunch or an evening movie.  I feel like it puts me in a position to have to apologize.  I don’t like this feeling and so I do find myself pulling back and avoiding even my existing friends.  I hate hooking up around people…I don’t mind their curiousity questions but I do mind having to explain some issues.  I hate the pity or the “hope you feel better” comments.  This is my “feel better”.  There is no “feel better” cure/fix around the corner.  This is my reality and I am struggling to find acceptance – I don’t need others to continue to try to keep me focused on returning to my old life.

It is a tough balance between taking care of myself by pulling away from some people and staying connected to people who care about me.  I know everyone means well but it is sometimes not helpful to me.  I know where I need to be mentally and it is definitely a journey.

Does anyone else experience similar?  How do/did you move forward?  How do you stop the “hope you get better” comments and move others into “acceptance” of your situation?

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With all the hoopla in the news lately about Susan Komen and Planned Parenthood I can’t help but wanna shout

THERE ARE OTHER CANCERS TO FUND BESIDES BREAST CANCER!!!!

For every dollar donated to breast cancer research, people ought to donate an equal amount to other cancer research.  Everyone with cancer deserves a cure, support and encouragement.  I don’t want to appear to be dismissing breast cancer support but it can often seem that all other cancers are not as worthy of curing.  I’ve actually been turned down for financial assistance because I had stomach cancer not breast cancer…if you lose your hair to chemo from a non-breast cancer, you don’t get the wig/make-up etc assistance that you can get if your boobs are involved.

All the emphasis on breast cancer and pink ribbons seems to overshadow the harsh realities:

Cancer is a leading cause of death worldwide and accounted for 7.6 million deaths (around 13% of all deaths) in 2008. The main types of cancer are:

• lung (1.37 million deaths)
• stomach (736 000 deaths)
• liver (695 000 deaths)
• colorectal (608 000 deaths)
• breast (458 000 deaths)
• cervical cancer (275 000 deaths) (3).

About 70% of all cancer deaths occurred in low- and middle-income countries. Deaths from cancer worldwide are projected to continue to rise to over 13.1 million in 2030.

Yeah, I am probably being petty but look around – breast cancer is only one form of cancer.  Your mother, sister, aunt, daughter, etc. can get stomach/brain/lung/skin/etc cancer without being in any risk category…so can your father, brother, son and uncle.   Yeah, I have my panties in a wad because of all the breast cancer ads I have heard today. They all seem to imply that breast cancer is the most devastating diagnosis you can receive. Do people not realize how few women with breast cancer actually die from breast cancer compared to other cancers? Do they know that all women (and men) need a cure for cancer – not only breast cancer victims. I am ready to say “chop off the boob and move on”. I know that is not right and it is just my frustration showing.

 I am tired of the lack of support that breast cancer agencies and fundraisers demonstrate toward other cancer warriors and survivors.

There also needs to be more support for cancer survivors.  A friend has been talking about forming a charity to help survivors.   I like the idea of a charity but curious as to the depth of the mission.  Since there is no “research” except regarding the long-term effects of surviving cancer I think that asking for support might not be as appealing to many people. I think that education regarding the impact of cancer needs to be increased as I hear so many people comment “well, you survived cancer, so why aren’t you working?” or “well, now that your cancer is cured….” or “your issue is not cancer…” or the worst “I know so many people who have had cancer and are just fine now” (implying that I somehow messed up surviving cancer).

People assume that SSDI is sufficient (hahahahahahahahaha). It is also not a matter of “getting back to living and moving forward from the cancer”.

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On the medical front…I do have an update but my eyelids are drooping.  It’s tiring to keep getting up and down from my soapbox.

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Question – why do I continue to cook and make such incredible food when I can’t eat it?  Don’t say I do it for the boys as they will eat mediocre food when hungry.  Today was a pesto quiche, homemade cookies and later Korean BBQ chicken with homemade crab rangoons.

2 bonus points to all who have read this post from beginning to end….

Frustrated by pain…

Today was another day spent moving as carefully as possible to avoid using any abdominal muscles (impossible).  My stoma site is as painful as it has ever been — it is as painful as the incision site was after each of the three major abdominal surgeries.

I finally conceded to the pain at the end of last week and asked my doc for some vicodin.  I hate taking vicodin but it takes the really sharp edges off the pain.  Even if I don’t move, there is a dull ache.  Today it is even more sensitive because I was a vendor at a craft show yesterday which meant sitting for several hours and a little lifting.  I did a load of laundry this morning and sure enough, the site was bleeding by afternoon.

I struggle with the challenges imposed by my limited hours off pump – now to have this level of pain has limited my activities even more.  Very discouraging.  I am trying to stay upbeat but, damn, pain can be a real downer.

I see my primary care doc on Wednesday…he will probably do another silver nitrate treatment (agony) but that doesn’t seem to be helping that much.  The tissue that the plastic surgeon removed has returned (and then some) so even his aggressive treatment isn’t providing any relief.

Later this week is the iron infusion (ahhhh the anticipated taste of sucking on rusted nails has me so looking forward to the infusion….NOT).  Pat (infusion nurse) is great for conversation but it would be nice if I actually felt some improvement from the infusions.  It raises my iron levels a little but the levels never quite hit even the low end of normal.

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On a positive note, I am making a lot of purses/bags with all this down time.  I need to add them to the online store so I can actually sell some (gee, isn’t that the whole point of making them?).

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I turn 50 on the 22nd of February.  It is bothering me a little.  I was initially very frustrated at how to celebrate this milestone birthday.  Anything to do with food/drink out of picture, limited off pump hours, very limited resources, and apartment too small for entertaining.  But then….

…a friend offered to host a party during afternoon free hours on a Saturday

…another friend came up with a great idea.  Friends are to send/bring a skein of yarn that is most like them.  I will crochet a friendship afghan with the different yarns.  I figure the afghan will be the coolest thing ever (and warm for snuggling up with on cold winter days) or it will be absolutely hideous (hahahaha).  I am hoping for cool!  I have already received a couple of skeins with lovely cards from the individuals explaining how the yarn is like them.  Very exciting I must tell you.

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Tomorrow (14th) is my oldest son’s 17th birthday.  He asked if we could make sushi rolls for his b-day dinner.  I taught him how to roll sushi years ago and it is something we really enjoy doing together (we each own a bamboo sushi roller/mat).  Sushi is his favorite food but a little too pricey for my budget.  Since I am not trained on inspecting raw fish for parasites, we use smoked salmon and some lightly seared tuna for safety.   We will make a variety of rolls and he and younger son will eat every last bite.  My son is a sushi snob of sorts as he only uses special sushi rice done to specific methods in the rice cooker and will insist on picking out the avocados and other ingredients himself.

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Well, I think that is all the news that is worth blogging about….oh I know some of it isn’t really “blog worthy”.  Let me get over this pain hump or at least start taking stronger doses of the vicodin and the blogs will get more interesting or at least demonstrate some twisted or dopey humor.  I know there is always something that happens to me to laugh about.

Why just the other day I was doing a little shopping when I ended up near this woman and her 20-something daughter on the bread aisle.  The woman was harping on and on about people she knew – malicious type gossip if you know what I mean.  I found the boys’ bread and had to wait patiently as this woman kept the conversation with her daughter going – ignoring the fact I was trying to move further down the aisle.  I said “excuse me” twice and she actually held up her one finger (that universal “wait a second” gesture).  I couldn’t take it any longer and I turned my cart around and as I went down the aisle the other direction I was muttering under my breath (basically doing a rather rude impression of her).  A woman I passed gave me a most snarky look just before she said “oh mother dear….”   I should have been embarrassed but I was still fuming about her holding up her “wait” finger to me while she viciously attacked her “friends”.    Imagine my discomfort when the next day I was picking up a prescription and the woman at the register is the “snarky look” daughter.   Ooops!   She obviously recognized me….but didn’t say a word (neither did I…giggle).  I laughed probably a little too soon while walking away from her register.  Nope, still not embarrassed.

Even with my limited social interactions, I can still manage to misbehave…I may be celebrating my 50th birthday soon, but I can be very immature at times.  At this point in my life, I think that “maturity” is over-rated and I would much rather laugh then behave.

Say Goodnight Gracie

I need a wormhole

I recently discovered that ER visits in different dimensions aren’t horrible.  I know that in our dimension no one enjoys a visit to the ER but I just had one that wasn’t a dreaded event.  In fact, it was even a little *GASP* enjoyable.

I woke up on Wednesday to discover that the feeding pump had turned off during the night due to low battery and I never heard the alarm.  My tube was clogged.  I tried all the usual home remedies to unclog but nothing worked.  Ugh…now I needed to go get a new tube and based on past experiences this meant a trip to the ER.

I gathered some crocheting to do and headed to local ER.

I knew something was amiss when there wasn’t anyone in the waiting room.  They took me right back to the exam room.  I knew I was in a different dimension when I realized I couldn’t hear any screaming children or shouting drunks.  The ER was quiet with just the faint sounds of a TV off in the distance.

After a little wait, the doctor came in.  Very nice looking.  Very nice.  At this point, I am wondering if I am being punked.  I’ve met good looking docs (most are arrogant or lacking personality) and I’ve met nice docs (very old/very young) but to meet a good looking one (about my age) and nice…..hmmmm

We actually had a conversation and he didn’t assume to know me based on my medical concern.  He asked for permission to see if he could unclog the tube rather than simply replace it.  Of course I agreed….my stoma site is very very tender and last thing I wanted to do was to irritate the area with a new tube insertion.

Initially he had no success but then he remembered a tip from one of his med school mentors.  IT WORKED and he showed me how to do this myself next time there is a clog.    A few additional comments, some encouragement and I was heading home.  Amazing!

I was really impressed with this doc and this morning I sent him a thank you note.   I wish there were more docs like him out there…he definitely elevates the medical profession.

I was telling a friend about this doc when she interrupted to ask “Is he married?”   I had to confess I didn’t even think to do the “ring check”.  But her comment did send me off into a whole ‘nuther train of thought.  I am single but dating with my medical restrictions is too much of a challenge for me to seriously attempt to “put myself out there”.  But, and this is a crazy thought, perhaps someone in the medical field might be a good match.  Think about it…I am at one medical establishment or another on a fairly regular basis for infusions, monthly shots, stoma site treatments, etc.  Someone in the medical field wouldn’t be as likely to be intimidated by the j-tube and PICC line and they wouldn’t be that likely to treat me as “broken”.  A doc’s long hours/odd hours might be a perfect match for my on-pump/off-pump schedule.  I could hold a decent conversation with them regarding shop-talk because of my knowledge/experience.

In fact, the only downside is parking.   You see there is a little imbalance when it comes to parking….their doctorate degree gets them special parking privileges whereas my doctorate degree means I still have to hunt for a parking spot.  For the right person, I am sure that I could let this little matter slide.  What do you think….shall I turn my next medical appointment into a potential matchmaking event?

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I knew I was back in the right dimension on Thursday when I had to get another stoma site treatment.  I did ask and receive some numbing medication (why are numbing shots so intensely painful?) but it was still rather uncomfortable.  Doc trimmed some tissue and then applied a lot of silver nitrate.  Thursday night and today have been painful and I even gave in and took some pain medication.  Hopefully this treatment will help more than the last one.  I suspect that it will take a few more days before the pain eases up.  Damned annoying to be honest….as if I didn’t have enough limitations that even movement is painful right now.  I am going to need more distance from this pain before I even think about sending this doc a thank you note….to be honest, he might never make it on this list.

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I am off to find a wormhole so I can find my way back to the ER doc’s world.