March 2012 update – plodding along

It’s 3.47 am and can’t sleep which is unusual on a Thursday – normally it’s just Tuesdays and sometimes Weds. Have awful acid reflux. Have just changed from Ranitidine – I discovered my Adcal (Calcium Carbonateand D3) reduces its effectiveness. Also a lot of aching and stomach like a balloon!! I know cancer patients are supposed to be uncomplaining and stoical, but sometimes I’m just plain grumpy. Having read a whole book of short stories I gave up trying to sleep and came downstairs. I often do some ironing if I’m up in the night but can’t be bothered.

Well just nearing the end of my 20th monthly round and although I think the side effects haven’t got worse (except maybe my digestion has deteriorated – constant reflux and a couple of bouts of bad diarrhoea and constipation plus piles), it does seem a bit hard going psychologically. Must be terrible for people who live with worse conditions for many years. It is true you adapt and get on with it, but every now and then I find I get resentful.Also, I am so stupid atm that, for example, I am correcting every few words I write and quite often I can’t write or say a coherent sentence.

However. Good news is my peripheral neuropathy hasn’t got worse. Also we have a new haematology suite at the hospital. It’s not much bigger but the treatment area is much better. But it is all being funded through charity – and they are only half way through raising £1.5 million for it through Macmillans. Shocking really that we have to rely on donations. I am sure it has affected the income of other charities across the town for ages.

We are still campaigning against cuts generally and the NHS Reform Bill. Anyone reading this – please do something to oppose this extremely dangerous Bill. Frankly it terrifies me, not least because I could find treatments and drugs no longer available to me in future. And that could apply to any of you one day. All in the name of profit, whatever they say. And my local hospital is now talking about patients having to travel to other centres to get treatment – I will be going along to a meeting next week about that. Write to your MP and paper. There’s lots of good oppositional material online.

Next week I give up being Sec of Trades Council. I will assist whoever takes over, but I hope to shed a lot of the workload and just assist with a few defined jobs. It’s too tiring, I don’t get to meetings and I want some me/family time. Thinking of trying to take up something creative – I have a whole set of pencils waiting for me to start drawing. Union and political work is still important to me, but there has been a lot of it the last two years and now I will be able to support without having to organise so much.

We are planning some short hols this year, as we only had one last year. I find a few midweek days at a time more manageable and I don’t feel brilliant Fridays to Sundays. Tonight we booked a few nights in Bruges with my son and his wife! We’ll also go to Floriade later in the summer, a huge flower/plant show in the Netherlands which comes round every 10 years. Then maybe one or two other short breaks back here. No big house or garden projects! So fingers crossed my health remains OK so we can enjoy ourselves.

Well, maybe I’ll stop drivelling on and go and go out in the garden now! The foxes were mating loudly yesterday. The frogs have returned to the pond. And my bulbs are eventually coming up. The garden is a mess, and I’m looking forward to pottering around as it gets warmer.

Take care everyone and I’ll try to update a bit sooner (don’t hold me to it!).

Those were the years…..

We’ve been home from the hospital just a little over a week. Just in time for my honey to celebrate birthday number 74. 74?? How can he be 74 when I’m only 39!!!  I look at him and still see that same good-looking young man that I met, in college, all those years ago.

Those were the years when we were healthy. Those were the years when we thought nothing about “getting old”. Those were the years when cancer never entered our minds. Those were the years when we were young parents, with sweet baby girls (that had their days and nights mixed up!)

Today, we very happily and quietly celebrated number 74 with Gale (daughter/nurse). Last year, we weren’t even sure that he’d be around for number 73.

Today, he received the very best birthday present of all, from the good Dr. H.  He is in Complete Remission/Response (there’s a debate about the terminology…..but at any rate…..MM has taken “a hike”, for the time being.)

So, without further adieu….without discussions of pain and pain meds….or being weak…..or having MM….we’ll just end this posting on a positive note. Those were the years…..that have turned into these years…..these years when we face the winter of our lives.

Beautiful days, weeks, and months…….those were the years……..that bring smiles from the memories we created.

Remission!! What a beautiful word.

  

How lucky we are…..

Tomorrow, we will have had my honey home from the hospital for one week. Our daughter Gale, “the nurse”, gets her Stethoscope and listens to his chest…….and she says it sounds clear. Finally, the pneumonia is gone. He’s still weak and feels bad, but she tells him it’s going to take awhile for him to recover. Just standing, to shave, makes him weak and gasping for breath.

Today, we went to the Cancer Center for his monthly appointment with his oncologist, and Dr. H verified what “our nurse” had been saying. “You were very sick, it’s going to take awhile for you to get over this.” He finished up with “You are looking good”. Dr. H can always put a smile on his face. If confidence in one’s doctor is half the battle, then we’re on our way to winning the fight!

What a long day this turned out to be! It was the day for the Zometa infusion, but because he has had pneumonia it was now necessary to begin having IVIG (immunoglobulins) infusions. The immunoglobulin is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG’s effects last between 2 weeks and 3 months. It is mainly used when the patient has had an acute infection or has a compromised immune system (as is caused by MM and the treatment thereof).

The IVIG is given in his Infusa Port, with Benadryl, Zantac, and Steroids and takes approximately 4 – 5 hours to administer. He slept much of the time during the procedure, and by the time we started toward home, near 3 p.m., the steroids had taken over …… and he talked, non-stop!

He still has terrible pains, in his legs …… those pains that are close to bringing tears. “Our nurse” has begun to give him Tylenol whenever he takes his Dilaudid, and it does seem to help. Dr. H also agreed it was a good idea as long as he doesn’t receive more than 4 grams (4,000 mg), per day.

We know that it’s getting close to time for “our nurse” to get back to her home, and her family (just as our TX daughter had to do), and I’m dreading that time.  How lucky we are. I thank the Good Lord, everyday, for these two special daughters. They are my strength. How lucky we are.

Good news, at a bad time………..

M-Spike is Zero!! That good news could not have arrived at a better time. Even though my honey was still spiking a fever, and felt terrible, it did bring a smile to his face…..and tears to his eyes.

It has been almost two weeks (tomorrow), and we’re still taking up space in a hospital room. We’ve changed floors, and daughters, and are still fighting the Pneumonia and Staph infection…….and we’re glad the MM decided to take a break!

On Saturday, he was moved from the Telemetry Floor to Regency Hospital (a hospital within a hospital). Regency is the Long Term Acute Care, on the 5th floor of FGH, where he can continue to receive antibiotics, breathing treatments, and physical therapy, and get well enough to “eventually” go home. (So far, he isn’t to the point of having that discussion.)

He still has pneumonia in the lower lobe of his right lung, but his breathing is much better, and the Staph infection is still prevalent. The Infectious Disease group is collecting blood and growing cultures, and believe that the Infusa Port is the source of the Staph Infection. If that turns out to be correct, there will be surgery in his future….to remove the port, and try to clear up the infection. In my opinion (and you know how much that is worth) that has to be the source…..otherwise, with all the antibiotics in his body……surely it would be cleared up.

And, because his stomach is so sensitive (and he’s had so many antibiotics), I’m wondering when the C-Diff (caused by antibiotics) is going to show up!! (Not that I’m a pessimist…..I just know this man, and his stomach!) And, once one has had C-Diff, it usually recurs.

We’ve had such a week! I ended up in the ER on two separate nights, in horrible pain. And….wouldn’t you know  one of the ER docs was one my honey had (before pain control). One of those that thought we were in for drugs……which we were!! So now, “the old lady” is back, in pain…..”my, my”. As it turned out, my pain was an abscessed tooth that took on a life of its own. And, my face looked (and felt) like I didn’t win the fight. Almost one week later, I still have a “puffy” face, my lips are numb and tingling, and my mouth is sore…..and I’m minus two teeth and one permanent bridge (yep, the teeth were anchoring the bridge).  I had really hated that bridge……but I just didn’t realize that God was going to put me thru such misery so I could get rid of it! So, in this instance…..I didn’t “blame” God……I thanked Him!!

On Sunday, we had a changing of the guard around here. Youngest daughter, Robbie, had to return to TX and her little family, and work. Our eldest daughter, Gale, was glad to escape the colder weather of PA and come to our aid. And, since she’s still recovering from her own illness and accident, the timing was perfect. I don’t know what I’d do without these two and their helping hands. We’ve all learned that when one is tired enough, a hospital “bed chair” sleeps pretty well. Thankfully, my honey is well enough to be left alone these past few nights.

MM is usually the underlying cause of many of our problems. We’re so happy it didn’t join this fray and cause additional problems.  It was nice to have good news…….some sunshine behind those dark clouds.

An unexpected detour…….

Early last Thursday morning, my honey awakened me with chills and fever. He was extremely weak and needed help to navigate from the bed to the bathroom. I had also begun to see a pattern of 1,000 mg. of Tylenol having more success with his pain than 4 or 8 mg. of Dilaudid. I was also almost positive that the location of his pain (right, upper back just under his shoulder blade) was probably an indication of what I feared most – pneumonia. Coupled with my fear that he was getting dehydrated and beginning to have kidney problems, there was no doubt we were going to a hospital.

There were two or three hospitals within a 15 – 20 minute drive of our RV Park, but I made the decision to get him back to Hattiesburg, and the hospital where all his medical records exist. In his weakened condition, my concern was whether he could withstand the 1 1/2 hour drive. Friends helped him down the RV steps and into the car (I had barely been able to help him get to the bathroom – so I knew that trying to help him down the narrow RV steps could put us both in the hospital.)

With the flashers going, and my heavy foot (NASCAR drivers would have been so proud), we pulled under the ER canopy in about 45 minutes. Even though the ER waiting room was filled to capacity, he was bumped to the front of the line because of his age and his condition.

My worst fears were soon realized: Pneumonia and Acute Renal Failure. Little did I know that the news would soon get worse. He was moved, not to the Oncology Floor but to the Telemetry Unit (patients that are seriously ill or in danger of developing complications).

The Hospitalist on duty informed me that he was stopping Bob’s Chemo (Revlimid) because his blood counts and platelets were dropping.  Just 6 days earlier, his Platelets were 158,000 and now they were 78,000 (two days later, they were 43,000).  He would be headed toward a Platelet Infusion and probably a Blood Transfusion, if the numbers didn’t begin to correct. (Note: His last dose of Revlimid was on Thursday morning, prior to our hospital trip, and his Platelets today were 52,000.  Still not great, but an improvement.)

On Friday, we were told that he had some type of unidentified blood infection, which is causing chills and fevers (almost on a 12 hour schedule…..usually at 4 p.m. and 4 a.m.). And today, I was told that there is a concern of Acidosis (excessive acids in the body fluids) which is being caused by the deteriorating condition of his lungs and kidneys. The bags of antibiotics and fluids, hanging on the IV pole at his bedside, seem to be having a hard time battling the unknown infection attacking his body.

An Infectious Disease Specialist was called in and has identified the infection as Staph (thank goodness, not MRSA), and added more antibiotics to his IV pole. The origin of the Staph is unknown, but the ID Specialist is leaning toward the Infusa Port (for administration of chemo, etc.) Cultures have been inconclusive.

A Pulmonologist has been consulted and is concerned that very little progress has been made, in treating the pneumonia, (in both the upper and lower lobes of the right lung),  even with all the antibiotics. He will perform a Bronchoscopy (use of a flexible fiberoptic tube to view the insides of the lung) and obtain samples, tomorrow morning.

On a positive note, his kidney functions seem to be improving  and the stoppage of the Revlimid has allowed his blood counts to begin to correct (some needed to increase and others to decrease). The good Dr. H is having his M-Spike checked……just to keep track of the Myeloma. We pray that it is taking a rest while all the other battles are being waged, in his body.

Needless to say, he is very weak and has begun to sleep much of the time. Just a short walk to the bathroom is tiring.

Thankfully, our daughters are now old enough that they feel they don’t have to listen to me (everytime). Robbie arrived from Texas a little before 10:00 p.m., last night. How wonderful to have support – both physically and mentally. Gale will come, when Robbie has to return home. 

We are so thankful for all the calls, text messages, emails, FB postings, visits, cards, and goodies…..and especially for your concern, thoughts, and prayers.

What a journey we’ve been on, this past year. Just when it seemed that we had gotten over the bumps, and around the major roadblocks, it appears there’s a detour……….praying that we get back on the right road…..soon!!

The knocking stopped…..and then…..

Have you ever had a car making a terrible noise…….you take it to the garage…..and NOTHING!!  And then you get back home, and it starts…….again.

That’s sorta’ how it can be, sometime….at our house with this thing called Multiple Myeloma and pain. Last Thursday, my honey went to the Driving Range to hit golf balls. This was his first such outing in several months. And ever since he (we) has paid the price, in pain.

Sunday was just an awful day – with regard to level of pain. Finally, around sunset (isn’t that when it always gets worse) I called his Pain Management Specialist. Thank goodness, this is one of the doctors that will share his cell phone number (although this was my first call to him), and he also makes house calls!! He told me what to do to get the pain under control, and said he’d see him on Tuesday (Monday was a surgery day).

Monday turned out to be a pretty good day…..for both of us (well, if he’s pain free…..I’m headache free!) Then came Tuesday and our appointment. Not that I wished my honey any pain, but wouldn’t you know on a scale of 0 – 10……he was 0 that day! (Take the noisy car to the garage, and it’s “knock-free”, everytime!)

Anyway, things were good. Doc thought the Driving Range was an excellent idea as long as honey didn’t overdo it. And, he also gave me permission to increase the dose of Dilaudid, if necessary. So, we walked away with a pat on the back, a bill, and new prescriptions. Since they are controlled substance drugs, we have to do this every three months, anyway.

And along came today. It started early this morning with pain and chills. He’s usually cold, because of his anemia, but here was this knocking (pain), again! He requested “one of my little white pills” (dilaudid), which usually work their magic after about an hour. Two hours later, he was still in pain…..so I gave him another “little white pill”, and then there was the headache…..so I administered two Tylenol. Finally he slept, and with sleep comes relief from pain.

He rested and slept, off and on, for most of the day….and then came late afternoon, again……and MORE pain, seemingly worse than ever before. So, out came the “little white pills”, and this time I gave him two as well as a Phenergan, for nausea, which always bring blessed sleep. The pain subsided……a little.

Tomorrow, we’ll go back to the good pain doctor and probably an injection of steroids. This time, though, the pain is in an area of the back where it has never been …..around the T5 and T6 vertebrae. And so I worried…..could it be pneumonia??

And, I’m concerned. There is an odor……to his breath…..that I smelled way before I knew he had cancer. I later learned that it’s an indication of Renal problems. Tonight, and last night, I smelled that same odor. His eyelids are his greatest telltale sign of dehydration, and they are beginning to show those signs, even though he drinks plenty of liquids.

I called the Cancer Center “on-call” doctor and she suggested that I take him to the nearest ER to be sure he doesn’t have (1) Renal failure (2) another compression fracture (3) pneumonia. If there’s a choice, I guess I’ll take door number 2. There’s a hospital nearby…..much closer than if we were at home…….but he “assures” me that he’s better. I don’t want to have to make this trip ……to an unknown hospital……in the middle of the night.

This time last year, when we first received the MM diagnosis, we were making these same kind of trips to the hospital. I didn’t intend to mark the milestone with “celebratory” trips, this year. I thought things were really going good at our house because the knocking stopped, and then…….

No celebrations ….just milestones

It isn’t an anniversary, and it isn’t a celebration ….. it’s a milestone. The end of this week – Friday, to be exact, will be one year from the day that we learned that cancer had invaded our lives. Cancer. Just the mention of the word brings a shudder. Cancer. Not something that can happen in this family. Cancer. Who, us???  Cancer. Yes, us.

“Us”.  Bob, or my “honey”, as I call him, is the one with the cancer ….but it’s really “us”. As our youngest daughter so aptly stated, cancer metastasizes to the entire family, so even though my honey has the cancer, we all feel the pain.

How did this happen? Why us? Why him? Why was he “chosen” to bear this burden of Multiple Myeloma? He often asks “Why me?” And, I don’t know. Why him? Why does anyone get cancer?

Things have gotten so much better over these past 12 months. For some reason, it’s much easier to think of it in “months” rather than a year. And, I’m not sure why. Maybe saying “months” doesn’t make it seem so long.

Like childbirth – he seems not to remember those early days when there was so much pain. And for that\ I’m thankful, for it was terrible. (Those are memories I don’t think I’ll ever forget.) Just a few days ago, after months of being “easy” (not much pain) he decided that he’d try the Driving Range. For several days now he has paid the price, and brought me back to those days when we were battling days of pain.

I’m such a  “things happen for a reason” and “God works in mysterious ways” type of person, so I have to think that God was trying to make us realize that we have it pretty easy, right now. Life is good. This is our “normal”…and it isn’t bad. There are some who have it so much worse.

Life is good. It isn’t a celebration. It’s a milestone. It’s cancer. We’re just happy for every day…….whether it’s good or bad. We’ve been given another day.

  

A hidden treasure in this journey…..

It has been awhile since I posted……..just nothing new to report, on the homefront. I’d been thinking, for quite sometime, about writing a post on Coping, when there’s nothing with which to cope. Coping when things are good …..or maybe it’s just when things aren’t bad.

Somehow, I was unable to get enough thoughts together to write a decent post. I got a flu shot and had no flu, but had a very “successful” cold…..and just felt miserable. Just wasn’t in any mood to write anything that anyone would want to read. I knew I was getting better, when thoughts began to return to my head and were making their way to my fingers…….itching to be put into words.

My honey was not looking forward to starting his 2nd round of Revlimid/Dex. The first round made him feel absolutely terrible. He was legthargic, weak, felt bad, had no appetite, and any other adjective that I can think of. Of course, the first round started with itching and a rash …..so it wasn’t a very good “first impression”.

During much of his off week, he also had a cold so he didn’t get too much of a break from his misery. But colds have a way of finally clearing up, and he began to feel better before it was time to begin round number two.

Monday started the 2nd round, and so far (keeping fingers crossed) there have been no side-effects this time around. In fact, he’s moving better, feeling better, eating better than he has since b/c (before cancer). The Revlimid has a tendency to cause a drop in platelets and blood counts ……not the case here. His are going up!

Today, for the first time in months, we went to the Mall to do some shopping and he out-walked me.

This morning, we were sitting in the Cancer Center waiting for the results of his labs and it appears to me that instead of losing hair……his is growing! Now, my honey was his mother’s son (her hair was thin, and so is his), and now it really looks like it’s growing.

So, if there are no issues, it gets rid of the MM, and causes his hair to grow in the process…..I consider that an added benefit! Talk about searching for treasures – we’ll take them anywhere we can find them.

A journey ends…….

When Bob was first diagnosed with Multiple Myeloma, almost one year ago (October 7 will be one year), an old friend from high school got in touch. Her husband had been living with MM for almost twelve years, They had moved from Memphis to Houston to be near his oncologist at M. D. Anderson. He was considered to be a “walking miracle”, and after all those years was still doing pretty well.

She brought us great hope. It helped to hear from a positive force – someone who was a caregiver like I was about to become. And advice from someone who had been on the journey that we were about to take.

On Labor Day, her honey lost his twelve year battle against Multiple Myeloma. He was in a Nursing Home in the Houston area – a room that he shared with my friend, his wife. Not long after we spoke, she was diagnosed with incurable lung cancer which later metastasized to her brain.

And now, after only one year, my friend is in her last days.  Who knows why someone can live only one year, when another lives twelve. Maybe God thought her honey would still need her care, in heaven – or maybe God thought she couldn’t live without him, here on earth. 

May you rest in peace,  Herb. And may you go in peace, when God calls for you, dear Barb.

Sadness engulfs us, but knowing that these two will no longer experience pain brings us peace.  

Still plodding on

Hi, another quick update – I really will get round to a longer one soon! On my 14th round of meds. Research shows that being on the full dose of Revlimid for at least 12 months is good at extending remission, so let’s hope! However, it has become pretty wearing. I wasn’t able to see my consultant at my last appointment, so haven’t further reduced my steroids which I’d like to do if the results remain good next time. I haven’t really noticed a huge difference with halving the dose, which has been a bit disappointing, but maybe another drop will help. I do feel a bit more nauseous as steroids help with that and reducing them seems to have caused that problem, but the occasional anti-sickness tablet helps. I have been very lucky over the last years of treatment in not experiencing sickness due to chemo – nausea sometime, especially during the transplant, but nothing worse. I am trying hard to exercise more to make my muscles stronger – mainly walking or on a cross-trainer. Also gardening!!

Doing my Trade Union work as always – please all could readers of my blog campaign against the NHS ‘Reform’ which will be devastating for patients and staff. Please hassle your MPs and now the Peers – you can adopt a Peer http://www.goingtowork.org.uk/peers/ to write to. We had a well attended candlelit vigil last night outside the hospital. It’s cutting £30 million in the next two years, involving 300 redundancies and probably ward and operating theatre closures.

Just a note on people commenting on my blog – I won’t respond to anything which might be spam – if you have a question for me which you don’t want to put out as a comment you can email me on sarah@edweb.co.uk, but I will only respond if the email appears genuine and relates to issues about myeloma.

Have a good autumn everyone and let’s hope the weather improves!