My Wife is Dying of Lung Cancer

Envision59 · Regular Joined: 23 Aug 2009 Posts: 13

My wife has an autoimmune disease for which she rec'd an MRI a year ago June. A large mass was accidentally discovered in her right lung, so in July of 08 she had two lobes removed. Then all was well - until Sep when a PET scan found mets in her hip. That was irradiated. Then all was well until early Dec. We thought she had the flu -- lethargic, just wanted to sleep. An MRI from the emergency room showed brain mets. Decadron and whole brain radiation burned those away with a resulting loss of hair which has not grown back evenly. Then in Feb or so we began receiving bad news after each PET scan. Mets in the kidney, liver, back in the bone, back in the lung. The liver is now 25% engulfed. She's on her fourth chemo (last was Taxotere, an oral) now it's Gemsar. She's beginning to bloat a little; her ankles are swollen; she's sometimes confused but still works and drives. She even went to yoga on this past Tuesday but was too tired to return the next day. Her attitude is excellent as she dwells on the good things in life. Two days ago I said, "Well, the next big date to shoot for is Christmas." "No," she replied, "the next big day is tomorrow." We've been married 31 years, have four kids, and were expecting to spend retirement together. Doc said six months to two years and that was over six months ago. I do not relish the caregiver job I will perform; but as she says, "It is what it is."
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"It is what it is."

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 335

Hi Envison:

I just want to say how sorry I am for what you and your wife are going through. My heart goes out to you--I am at a lack for adequate words. Her positive attitude is most admirable, but I know this must be terribly painful for you and your children. You will both be in my thoughts and prayers.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

sugar12 · New User Joined: 10 Oct 2009 Posts: 4

I'm so very sorry for your wife and yourself. I am also a caregiver to a cancer-fighter. I would gladly take it on myself at any moment that I would be given the chance to remove the pain from my loved one and I'm sure you understand the same feeling. Your wife sounds like an amazing person and a fighter. Keep shooting for Christmas, sometimes you don't know what you can do until you do it! But love her everyday, like there won't be a tomorrow. I'll have you and your wife in my thoughts, sending you love and hope.

Envision59 · Regular Joined: 23 Aug 2009 Posts: 13

As my wife's disease causes more and more pain, her view of the world has begun to fold inward. What she eats, how she feels, bodily functions - all of which would not have been common conversation three years ago are now commonplace. She defines her life by work, and the house and household duties are hers and hers alone. No one can pack the dishwasher correctly; no one can properly wash and dry the clothes; no one can prepare dinners as well -- these are all her areas of operation.

So when, several days ago, she became so weak that she could barely negotiate the stairs, let alone carry the clothes or clear the table, she began to doubt herself. Today when we went for her doctor consult and following chemotherapy, they measured her pulse over 150 and her blood oxygen less than 85. No chemo! Instead she was rushed to the CT scanner where they discovered a blood clot in her lungs.

They demanded she stay in the hospital. She was distressed. "What about my lunch date tomorrow?" "Who's going to wash the clothes?" Then they told her that for the blood thinners to work she'd need to be a resident from three to five days -- she about went nuts!

Terminal cancer is much like a very long descending stairway with uneven and unexpected steps. Little declines in a linear fashion -- instead it moves in fits and starts -- but nearly always and relentlessly downward. Today was another of those steps. If the blood clot breaks up it can travel and clog the heart or brain -- death or stroke. If all works well she'll feel better than she has felt in several weeks. but it could all go upside down in half an hour. These are difficult times.
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"It is what it is."

melkissa

I am so sorry to hear about this newest update. Although her symptoms sound normal as far as the housework goes and doubting herself- I can only imagine this blood clot has made her feel worse physically AND mentally. Just continue being there for her and assure her everything at home is running smoothly even if it's not. I'm sure you already know that though! I will be keeping you guys in my thoughts.
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My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 335

I am sorry to hear the pain you both are enduring according to your latest update. It sounds like she is trying to live her life to the fullest giving her desire to do things-- only her body does not comply. Your statement about terminal cancer is heart wrenching; as it offers a true picture on the progression of this terrible disease. I hope this treatment works on the clot and your wife gets back to being able to move around again. You are both in my prayers and thoughts.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 72

I cannot imagine going through this with my husband. I'm having such a difficult time of this with my father. You are both in my prayers...you both are very strong.

Johanna
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Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.
11/24/2009 lost his battle.

REB

I am sorry you are having to deal with this. Ten years ago, I found out my wife had Lupus. When they told me Lupus was terminal, visions of us growing old together went out the window, and I had a hard time facing it. They gave her 12 years to live. Fortunately, they have come a long way with treating Lupus and one can live for a long time with it. Now it is myself that might not be there with her in old age.

I understand what you are talking about, sugar12. I am so thankful it is me that has cancer and not my wife or kids.
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10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - 04-09-08 FOLFOX regimen and Avastin.
04-28-08 Colostomy Reversal
06-02-09 3 Tumors in the adipose tissue.
06-23-09 Start FOLFIRI and ERBITUX chemo.
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI, continue ERBITUX
01-27-10 Tumors in Liver and Adrenal Gland
01-28-10 start FOLFIRI and ERBITUX chemo.
Age Diagnosed 40. Current Age:43

mjosborne · New User Joined: 26 Mar 2009 Posts: 9

I am so sorry to hear of the cancer progressing and know how hard it seems to cope with everything as it seems to come at you so fast. All the tests and Dr. visits and just the daily changes. I lost my Mom on Mother's Day this year to colon cancer that had spread to her liver and I remember at the time that I kept telling myself to take care of me as I would have tougher battles ahead. So true. Remember that you need to take care of you to be there for her and not to spread yourself too thin. I wish the two of you great memories and really make your time "quality." Know that there are many wonderful people on this forum ready to lend an ear at this tough time in your life.

Envision59 · Regular Joined: 23 Aug 2009 Posts: 13

JOURNEY of DISCOVERY

Dealing with cancer for yourself or a loved one is a JOURNEY of DISCOVERY. There is no such book as “Cancer for Dummies.” If there was, it would be as voluminous as the last printed set of the Encyclopaedia Britannica. I’m a guy, so I like to have the big picture, I like charts and graphs, I like percentages and bell-curves. It helps me understand. I often wished for a “roadmap.” No matter the circuitous route, the destination is always the River Styx – but it is the route that is so difficult to anticipate. It is one blind turn after another; one hurdle after a leap; one success after a failure. One comes upon a complete unknown (always accompanied by some fear), only to find on the other side a group of cancer patients or health professionals who dismissively remark, “Oh, that’s a common problem,” when, in fact, you had never heard of the problem before. Or, encountering some new malady, you are sent away from the cancer center without guidelines for recognizing further or new complications. A new medication may be prescribed and you naively think you will have to ingest some pill for the next week when, under query, the nurse remarks, “Oh no, you’ll take this the rest of your life.” Nothing occurs quickly. If it’s not simply waiting for an available appointment, then it’s waiting for a consultation before actually beginning a treatment, or waiting a day for the health insurance to authorize a new pain medicine. Very little is definite. And, the doctors are nearly always in a hurry.
No one – not the doctor, not the physician’s assistant, not the registered nurse, not the hospital social worker, not the hospital chaplain – NO ONE will tell you what to expect. This is a JOURNEY of DISCOVERY.

LIFE’S LESSONS

We are all tested. Some tests are more arduous than others. Some are tested more than others. As we pass these tests, we grow in knowledge, experience, and wisdom. Along the way we are imbued with a steely resolve to meet life’s challenges with patience, honor, and grace.

The lesson we see here is to live each day to its fullest and to find the goodness, the optimism, and the humor in life.

It is times as these when one appreciates the closeness of family and friends. It is also times as these that make one remember the lines which were so idealistically but lovingly and emphatically stated in our youth: for better, for worse; for richer, for poorer; in sickness and in health; to love and to cherish; till death us do part.

EQUILIBRIUM

In every household there is equilibrium. Each member of the household, whether he is a giver or taker, a supporter or detractor, whether he offers time, money, or direction -- all these work into equilibrium. If the dog dies the equilibrium is not much affected. But if the wife who does not trust her husband and certainly not her children to load the dishwasher, launder the clothes, pay the household bills, provision the pantry, prepare the meals (he doesn’t do it right - just ask her!), if this wife is absent, then the household equilibrium spins wildly, searching for the new pattern. The husband spends his time with his wife at the hospital – he cannot get to work. The clothes are done in fits and starts; dirty and clean garments take up residence in unusual places. There is little time to shop. Healthy food gives way to quick and easier meals. The kids find cereal and EasyMac comfortable substitutes for real meals; the husband pines for the evening dinners he remembers. The house slowly descents into a bachelor pad.

STAIRWAY to HEAVEN

There is a long, a very long, stairway both in time and emotion, the gradient of which is not linear but discovered with uneven and treacherous steps. Sometimes the journey plateaus, sometimes there is a brief respite much as a comfortable bench along the way. Yet this pathway moves ever steadily towards the Styx. During this journey there is time for discussion, time to repair fractured relationships, time to relive the past, time to plan for the end. No matter how painful this incremental pull becomes, it is far better than an unexpected visit from the sheriff to deliver heartrending news of a fatal accident. This experience has allowed us very many opportunities to share our joys and grief, our history and expectations, and to express our unending love for one another.
_________________
"It is what it is."

Envision59 · Regular Joined: 23 Aug 2009 Posts: 13

THANKSGIVING!

We DO have much for which to be thankful! We are able to spend time together and reflect on our successes (and failures) in life. We have siblings and children. No one is too far distant and holidays bring the whole family together.

PROGRESSION of the DISEASE

For nearly a month my wife has been afflicted by blood clots in the legs. One leg is very normal -- the other has swollen so greatly and is bright red. We've asked at the cancer center, we've been on the web, but it all leads back to the closing sentence of "The Count of Monte Cristo" -- Wait and Hope. We've tried soaking, binding, light exercise, and always have the leg elevated -- but it looks horrid and is very painful. She's up to 110mg of Oxcontin a day (40 in the am; 30 around noon; 40 in the pm) and that's not enough to hold the pain at bay. Pain management is extremely difficult. It's like trying to run down the center line of a road -- one shoulder is great pain, the other shoulder is loopiness (I'm not sure that's a word) and unconsciousness. If the victim encounters pain, it's too late to do anything quickly, even with immediate release Oxycontins, Vicodin, Darvocet, or Tylenol -- so one has to anticipate the quantity of pain. If drugged too much, you have to wait for the patient to reawaken. This past week she received two "units" of blood. Each unit is 320ml.

She's taken a couple of falls -- nothing that's hurt her physically, but one leg is so swollen and the other has cancer in the hip. She took the plunge today and rented a walker. Daily tasks are increasingly but incrementally more difficult. She speaks hopefully of the time she'll be able to get up the stairs, do laundry, vacuum -- but I'm not so sure that the last time she did these things will have been, in fact, the last time. She does continue to be very hopeful, speaking of next year's Thanksgiving and next year's Christmas, when I'm hoping she can hold on for this year's.

THE LIFE of a CAREGIVER

The last thing you attend to in the evening and the first thing you attend to in the morning is your patient. You make them breakfast, you administer their medicine, you help them shower, you help them dress, you accompany them into the bathroom, you lift them up from a seated position, you retrieve items that fall on the floor, you make the bed, you do the dishes, you launder the clothes, you clean the house, and you always have your ears attuned to their beck and call. Everyone says to me: Take care of yourself! Well, that's easier said than done! Not all moments are lucid and pleasant. One has to know when to stand his ground and when to acquiesce to illogical commands. There are times in which the patient and caregiver weep in each others arms; there are times that they raise their voices and quarrel. The caregiver loses his freedom and subjugates his will to the greater good.

POLAR OPPOSITES

There are two groups: the doctors, physicians assistants, and nurses who know everything (almost); and the victim or patient who knows nothing (almost). The gulf between these two is nearly unbridgeable. I do, sincerely, believe that the medical professionals assume that the patient has a much greater knowledge of the body, this disease, and all the variations of symptoms and the necessary courses of action. It is not until Hospice enters the fray that anyone can fill that gap.

So I figured that we would be involved with Hospice in the near future. I remember them raising money from time to time, so I called, ready to make a donation or something, so our family name would be on their register. Gosh -- I spoke with the rudest gal. "Have you been referred by your doctor" she asked when I asked her for an overview of their services and the timelines. I had to say that the doc has one more bag of chemo in his cabinet and that "No" he had not referred me. "Well, you need a doctor's referral!" she barked. First impressions are lasting. I wish I'd had someone not quite so impatient!

There are a great many lessons here. I sure do wish we could have read a book, watched a video, or sat with a person who could have given us some overviews. Death by cancer is not uncommon so it's frustrating to have to discover all this on your own.
_________________
"It is what it is."

Envision59 · Regular Joined: 23 Aug 2009 Posts: 13

Yesterday the doctor laid out the facts clearly to my wife and myself: medicine holds no further treatment, Hospice will help you make the best of your time remaining. My wife is certain that she’ll make it to Christmas and the first of the year, but even in this past day I can see a resignation enveloping her character.

So tomorrow the Hospice people come for the first interview. I know just a little from my mother’s experience with Hospice, but she was the exception – in full control of her faculties until the very end, and, really, my siblings dealt with the personnel. Here I will be an active participant, the primary caregiver.

MECHANICS and DOCTORS

When you take your misbehaving mini-van into the repair shop, you expect the mechanic to diagnose the problem, make the repair, and to be free of that particular problem forever. If the mechanic is lucky, he will diagnose the problem correctly, make the repair, and be compensated for his time. If his diagnosis is incorrect, if the repair he made is not correct, if the part he replaces fails (through no fault of his own), then the owner expects that shop, that mechanic, to revisit the job and get it right. After all, he paid “good money” to have it fixed. A good shop will re-do the job at no charge. And, no matter how horrid the problem, everything is fixable (it may not be rational, but it is ALWAYS fixable).

When you present your misbehaving body to the doctor, you expect the doc to diagnose the problem, order a prescription, and perhaps offer some instruction, after which the body will be healed. Whether the doctor is lucky or not, he does his best to diagnose the problem correctly, write the script, and be compensated for his time. If no cure is effected, the patient does NOT expect the doctor to revisit the job and get it right. The patient expects to have to pay again, and again. And, when the doctor has emptied his bag of potions, concoctions, elixirs, and pills, he says carefully and softly: Call Hospice.
_________________
"It is what it is."

terrismom · Regular Joined: 19 Mar 2009 Posts: 49

You are so correct. I relize that everyone is different, BUT most of the cancers act the same. And when you ask a question that they don't want to answeer, it's always " everyone is different" and that's all the answer you get. I know they can't tell you what day it's going to happen, but they could tell you what to expect with each cancer. So we start looking online trying to find out all we can as to what to expect, and all the time flying blindly. No knowledge of what is coming next and how to handle it. Am I doing everything right? Who knows. Everything changes after hospice comes in. They are not afraid to answer questions. ( I dealt with hospice with my SIL) Course by then it doesn't matter if you have done it all right or not.
Sorry should have not got started on this subject. It's just so frustrating.

Monell

terrismom · Regular Joined: 19 Mar 2009 Posts: 49

I am in the same boat as you. Hopefully my daughter will make christmas. If she does then it's hospice. Where is the justice??
My prayers and thoughts are with you.

Monell

melkissa

I am so sorry. Hospice is absolutely outstanding though... I mean amazing people work there. They were so wonderful to my dad- I couldn't have asked for better care. He was happy and comfortable through his last hour. (((HUGS)))
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

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